Category Archives: Personal Spinal Injury Stories

Wheelchair users with spinal cord injury and other disabilities tell their personal stories.

wheelchair-lovers-hands

Quadriplegic Love Lasts

Quadriplegic love lasts and I was about to find out just how long. It was May10th 1999 and I had only been working as a taxi driver for a few days when at my local rank several drivers wandered over to introduce themselves. Shortly afterwards the passenger door of my car opened and a man got in. “Hi, I’m Steve, hope you are settling in ok.” I looked into the sexiest blue eye’s I had ever seen and fell in love at first sight. Steve was flirty and easy to talk to. After chatting for a while he gave me his phone number and told me to call him anytime, if I needed anything, or even if I didn’t. He said we should grab a coffee back at the garage where everyone went once the night’s work was finished.

There was just one problem. I was married and so was he. Neither of us happily, as it turned out. Additionally some weeks later I discovered I was pregnant. My husband was a violent man who thought nothing of repeatedly raping me. On top of that Steve was already seeing a girl. None of this stopped us growing closer and spending time together whenever we could. Long after everyone else had drifted home from the garage Steve and I would still be there talking. While at work he would look out for me by removing drunk passenger’s from my car if he didn’t think I would be able to deal with them, and was just generally my all round protector.

wheelchair taxi

I knew that our feelings for each other were growing stronger. One night we happened to pull into the garage at the same time to fuel up during a shift. We went in to pay for our fuel and walked out onto the forecourt together. As I went to walk towards my car, he grabbed my hand, pulled me into his arms, and kissed me. I could feel the heat from his body as I surrendered completely to the embrace. In that instant, I knew the feeling’s I had for him were reciprocated.

Steve had to travel 150 miles to work and stayed with family, or friends in the area. A few times he even stayed with my husband and I. As I mostly keep my marital problems to myself it wasn’t until years later Steve would come to tell me he always had a bad feeling about my husband. He knew something was not right between us and could see there was no love.

Steve’s own marriage was in bad shape. During work one night he picked up Kathy, an old girlfriend from his teenage years. He had pretty much separated from his wife so began dating her. As soon as the relationship began he realized it was not going to work. He wanted out but was worried about hurting her as Kathy was in a job that had a time limit on it and she was clinging to him as a savior.

The Game Plan

I took a phone call late one night towards the end of August. “Sarah, are you busy babe? I need to talk to you. It’s kind of urgent.” I replied, “No Steve, I’m at a rank and it is dead quiet. Where shall I meet you?” “Garage, fifteen minutes.” was the reply. I was there in ten, parked my car and got into his. He drove us out of town to a quiet area and began to talk.

Steve explained how he wasn’t sorry about the fling with Kathy, as he had ended his marriage, and that he missed his two son’s. He felt things with Kathy were going nowhere but she kept talking about their future. He wanted out and didn’t know how. I told him there was no easy way and pointed out how during the fling he had neglected work and his friends. He needed to get a grip on things and the relationship would naturally fizzle out. I think deep down we both knew the real reason it wasn’t working out with Kathy.

We talked for several hours that night. Steve knew the thing with Kathy had to end, he knew what he wanted, and I knew what I wanted too. I would have to end my, very unhappy marriage, and try to escape it to be free. Steve was the first person to feel the baby I was carrying move in my belly, everyone assumed it was his, and that we were already seeing each other. Someone had told his estranged wife we already were, but we didn’t know who.

Steve started working more, and things began to get back to normal. He was desperately trying to extract himself from Kathy’s grasp but she kept telling him she would fall apart if he left. He struggled with the guilt, and his ever increasing feelings for me. On the 21st of September, it was Steve’s older brother Mark’s birthday. Kathy, Mark and his girlfriend Louise, plus another driver and his girlfriend all went out to a local pub/club. I drove them to the venue.

No More Secrets

As they got out of my car Steve said I should get there 20 minutes earlier than they had asked me too, and text him when I got outside. So I did, and two minutes after I sent the text, Steve came outside alone and got into the front seat. He pulled me into his arms, kissed me passionately, and said to me, “Right, I’m going to tell her it’s over, tonight, I can’t take it anymore. Sarah, it’s you I want, and if I have been reading this right, I know you feel the same.” I looked at him, “Steve, you know I do, I just didn’t know if I should say anything.”

We did everything but make love right there in the car. Only because there wasn’t time, I wish there had been, no one had ever made me respond the way he did that night without actually having sex. I had never wanted someone so much in my life. He wasn’t put off by me being pregnant. He told me I was incredibly sexy, and he wanted me, so badly, but he had to end it with Kathy first. We arranged to meet for breakfast/lunch the following day. I figured I would tell him everything about my marriage then, and how scared I was of my husband.

I dropped everyone off home, Steve and Kathy last. I got out of the car to say goodnight and he hugged me like he never wanted to let me go. I saw the realization on Kathy’s face, she knew what was coming, and she knew why. She was slim, kind of pretty, younger than me, and a professional stripper. She knew she was going to lose Steve to a married, pregnant, taxi driver. It had been raining heavily on and off most of the night, so after getting me to promise I would drive home safely, and me telling him not to do anything stupid, he promised to call me the next day.

I drove home to my very drunk and unpredictable husband. He was still awake when I arrived. He looked up at me from his chair, “Dropped your lover and his bird off have we?” I looked at him, “George, it’s over, I don’t love you. I want a divorce. Steve isn’t my lover but I can’t do this anymore. I can’t lie about how I feel and I don’t want to. I want a divorce because I want to be with Steve and he wants to be with me. I’m sorry, but there it is.” He freaked out, “I knew it, you’re fucking him aren’t you, that baby is his, isn’t it, that bastard slept in my house, drank beer with me, and all along you and him were fucking each other behind my back! Well, he can have you, I don’t want you, after he’s had you, dirty little slut!.” And with that he stamped off to bed, after about half an hour I followed him, and slept, not very well.

The Accident

At 7.45am my mobile phone was ringing. I woke to a voice on the other end asking who I was, and explaining, “This is Paul, Mark’s twin brother, where is he, it’s urgent.” Fear gripped me. I knew something bad had happened to Steve. “What’s happened, its Steve isn’t it. Tell me what’s happened!” His reply will never leave me as long as I live. “Yes, he’s been in a car crash, it’s not looking good. I need you to find Mark and get him to hospital quickly, may not be much time, I’ll keep ringing around, just get there quick, and safely, ok?”

tetraplegic crash

I was dressed in a shot, my heart pounding, crying and praying to who I don’t know. George woke up, I told him what had happened, told him I was going to the hospital and I would be as long as it took. He watched me in silence as I finished dressing and ran out of the bedroom.

When I arrived at Mark’s house he was waiting for me. “It’s all my fault, I told him he had to move his car. It was across my driveway. He was driving that stupid bloody TVR of Kathy’s. I think they had a row, about you. He’s in love with you isn’t he Sarah?” I just looked at him with tear’s pouring down my face and nodded. “I’ll drive, Sarah you are in no fit state love.” I just totally disintegrated. Louise put her arms around me as I sobbed uncontrollably, and we got into the back of my car. She held me tightly as I wept on the way to the hospital.

On arrival at the intensive care unit of our local hospital we were informed Kathy had died instantly in the crash. The car had hit a massive puddle and slammed into a large oak tree at about fifty mph. She was not wearing a seat belt. We were not allowed in to see Steve. They were too busy trying to stabilize him, so we waited… and waited.

Paul and Mark talked in low voices in the corner. I heard my name mentioned, and Paul say that I should go home, as I was six months pregnant, and they were worried that it was all too much for me. I walked over to them, “I’m not leaving, I’m staying. I want to see him. He needs to know I’m here.” Glancing at Paul, “Does he know, Mark?” Paul looked at me, “Yes, I know, we all knew before he even admitted it to himself. For the last four months all Steve has talked about is you Sarah. Of course I knew, he’s my baby brother after all.”

After what seemed like years, and about a million cups of strong sweet tea, a nurse came to us and asked who was first. Paul and Mark both indicated me, and she asked me to follow her. I went into a bay with four beds. Steve lay in the furthest from the door on the right. His neck brace still on, lines and tubes everywhere, and surrounded by machines. She told me he was heavily sedated but would hear me and know I was there.

She found me a chair but I stood there, next to his bed, more tears came. “Oh Steve, I told you not to do anything stupid and you didn’t listen did you? Oh baby please, hold on, I can’t be without you, not now, I need you.” His eyes flickered open for a second, “Sorry Babe, I’m not dead yet, I’m trying… I love you.” I had to lean in close to hear him, my tears falling on his face. “Don’t cry Babe.” he whispered. I stayed with him, for about half an hour, and then realized that I should let his family in to see him, so I kissed him, on the forehead and promised to come back the next day.

Quadriplegic Ventilator

I walked out into the family waiting room and collapsed into Mark’s arms sobbing uncontrollably and shaking from head to foot. He guided me to a chair, and Louise found a nurse, who took my blood pressure, and asked if I had eaten anything. It was two in the afternoon by then. I shook my head at her, unable to speak. She said someone should take me for food, or home. Louise looked at me and asked which. I said food, so she took me for something to eat, and Mark went in to see Steve.

Turning Points

By the time we came back, everyone but Louise had been in. Steve’s parents had arrived and Steve’s wife was with them. She didn’t want to see him, and caught the train home the next day. Mark and Louise drove me home. Mark promising he would drop my car back later in case I needed the distraction of work. He told me not to worry, Steve was a stubborn git, and he would pull through. At this stage it was unclear what his injuries actually were.

I walked slowly into my flat where I was greeted by my now belligerent husband who without preamble asked if Steve was dead. I shook my head, told him I needed to sleep, and could he keep quiet, and look after Sean, our 2yr old son. He huffed, and agreed. I went into the bedroom, undressed and got into bed. Lying there, on my own, I cried myself to sleep.

I was woken around 10pm by a text message alert, with shaking hands I picked up the phone, and opened the message. It was from Shawn, another driver who worked for the same people I worked for. The text asked where I was, and Mark, and Steve, and how the phone was going mental with work. I sighed and rang him to explain what had happened. I tried so hard not to cry as I explained.

Shawn asked if that was why my car was parked outside Mark’s house, and offered to come and get me, so I could pick it up. I accepted, might seem a little weird, but I didn’t want to be at home with my husband. I had a quick shower and got dressed. George watched as I got ready to leave. “So, what are you going to do if the bastard dies then, stay and dump his kid on me?” I shook my head, “Not now George, drop it, please, I’m going to work.”

That night was busy. Steve’s phone was still diverted to mine, so all his customers were calling for a taxi, and asking where he was. I broke down and wept many times that night. The majority of his customers had seen us together, and knew how he felt about me. They were all very understanding. Mark was at work too, we met up for a coffee at the garage once work was over.

“You ok Egg Belly? Want a coffee?”  “No thanks Mark, Steve get’s me chocolate, I’m off coffee” (Egg Belly was Mark’s nickname for me as my pregnancy began to show). He looked at me, “You’re going to cry again, aren’t you? Come here silly girl, he’ll be ok, and you two will be together.” We sat in the garage, Mark hugging me gently while we chatted about why he felt so guilty about the crash. I have to admit for a short while I also blamed him. And myself because I knew if I had come clean that night in the car park, about how violent John was, Steve would have come home with me. Mark never found out about the violence until much later either.

Hospital Visits

The next couple of months were odd. I went to the hospital every day. On each occasion the nurses giving me a laundry list of the dangers Steve was in. Steve had broken C4-C5, damaged his liver and punctured a lung which was filling with fluid, and blood. He would be paralysed from the shoulders down for life. At the time of the crash Steve was 32 and I was 31.

One day I went to see him, and his mum and dad were there, and strangely so was his wife. She walked up to me asked if the baby I was carrying was Steve’s. I just stared at her, and shook my head no. I later overheard a heated discussion between her and Mark, she told him that she didn’t want him back, and if he lived, I was welcome to him. I didn’t see her again after that.

After a couple of weeks they had to do a tracheotomy, and told Steve he was not allowed to talk. You never tell Steve he’s not allowed to do anything, he talked! I explained that they would do better if they told him that it wasn’t a good idea. His memory at this period was shaky but he was certain that he loved me, and wanted to be with me. After two months he was moved to a hospital further away, a Spinal Unit in Sailsbury. I was by this time almost ready to give birth, and my marriage was dead, the love of my life was paralyzed and my whole life was in ruins.

Tetraplegic Love Lasting

I continued to work, until the day before Kieran was born on the 30th of December 1999. I had an emergency C section with the previous baby, seven weeks early. Unknown to me at the time, this weakens the uterus, so while in normal labour, the uterus ruptured, and I pushed him out by myself. The bleeding wouldn’t stop, the placenta did not deliver, my blood pressure was falling, and somewhere inside me, I knew I was dying.

I panicked as they took me to theater to manually deliver the placenta, the anesthetist was a friend of mine, and I was lying there on the trolley saying Ken, hurry up, I’m dying, please hurry, I don’t want to die, he tried to reassure me but I knew. Several hours later I woke up in intensive care. A male nurse standing by my bed looked at me, and said he knew me, but wasn’t sure where from. I grinned weakly and said Steve’s full name. He said, “Right of course, you’re his girlfriend. I remember now, blimey, he had the girlfriend who died in the crash, you, and a nasty wife.”

I was in the ITU for a week, and in hospital another week. They had to perform a hysterectomy, and were not exactly delicate about how they told me, “You have four children, you don’t need to have any more, we had to do the hysterectomy, or you would have died.” I was off work for exactly eight weeks. When Kieran was three or four months old I went to the hospital to see Steve.

Mark told me they would be ok, and that I needed to get on with my life. I was absolutely inconsolable for months. I couldn’t get over it. Suffering severe post natal depression, the loss of my ability to have more children, and the biggest loss of all Steve, I went and did the most stupid thing ever in the history of stupid. I had an 18 month affair with Mark, Steve’s older brother.

Kieran was 10 months old, it was my 33rd birthday in the October, and Mark organised a small party, at his house. His four kids were there, my four, Mark’s girlfriend, and my husband. Mark and I still dealing with our guilt over the crash, me with the death of my marriage, and my hopes for my relationship with Steve, my husband with his headlong dive into alcoholism and drug abuse, and of course wife beating.

Mark’s girlfriend and I went to the local on foot, leaving the others at the house. Mark and my husband had a fight. He asked Mark if he was fucking me, ever the smart arse Mark said no, but I’d like to. When we returned it escalated. My husband threatened me with a carving knife. Mark bounced his head off a wooden garden table, telling him, if he touched me again, he’d kill him, adding if his little brother was there he would not have offered the courtesy of a warning. The police were called and George was arrested. I was told I could stay there if I wanted to, they would make room, and with hindsight I should have, but I got a taxi home.

Closing Old Wounds

I arrived to find my husband attempting to burn the house down after having trashed everything. I called the police, they came, told me I was winding him up, it was the marital home, and he could wreck it if he wanted. On the 19th of November he kicked me across the living room in front of our 2yr old son and ruptured my bowel. I didn’t get to go to hospital for about four hours. I cleaned up the dinner he had thrown at me, and sat on the sofa, while the pain increased. Eventually he called an ambulance, warning me if I told them what really happened he would take our boy, and my precious bastard baby of Steve’s, and I would never see them again.

quadriplegic abuse
As we walked down the stairs at home, husband on one side a paramedic on my other, I began to feel sick. The paramedics shoes or my husband’s? No contest, as I felt the vomit rise in my throat I turned my head and puked all over his shoes. That made me feel so much better. I was in hospital for two days, before they figured out what was wrong, I was prepped for surgery, I had bowel resection.

Jim, a driver I worked with, and was good mates with came to see me. He sat next to the bed, looked me in the eye, and said, “Sarah, I know what’s been going on. I know you are frightened, and I know that’s why you haven’t left him, but this can’t go on. He will kill you in the end, talk to the police, please I’m begging you!” I looked at him, tears rolling down my cheeks. “You call them here, I’ll talk to them.” It took two hours to take my statement, they wanted me to go home, and said they would arrest him a day or two later… I looked at the police officer and said, “Who do you want to take out of there in handcuffs, and who in a body bag? Because I won’t be leaving in a body bag.”

Mark came to see me in hospital. I told him it was his fault. That if the family had not vetoed Steve being with me, none of this would have happened, he looked at me, and just nodded. The night before I was going home George came to talk me into forgiving him, promising to get help. I said the same thing I said the night of Steve’s accident… That it was over, and I wanted a divorce, and he was to leave when I got home, immediately. He was not to threaten to take the boy’s and he should be packed to go as soon as I arrive. He accepted this and left, taking my baby with him. I was terrified he would harm our kids.

The next morning it was like a military operation, my drugs were dispensed, and ready for 9am. Jim went to the house and met the police, they arrested George. Jim collected the kids, house keys, and came to the hospital to collect me. I went home in my pajamas!

My recovery took longer this time and as I couldn’t drive, I became the radio and phone operator at work, kept amused by all the drivers. Mark and Jim, to name a few, became my support network. Mark and I talked about how I felt about what had gone on with Steve and came to an agreement that it may have been the wrong choice to send him home to his wife. I never understood why they did it. None of them liked her, she was an awful wife, cheating, neglecting the kids, and the house. She was mentally abusive to Steve from the moment he got home. So while Steve was being abused by her, and I was being beaten to within an inch of my life, I completely failed to see who benefited. Mark did, he got what rightfully belonged to Steve, for a short while anyway.

Wake Up Call

One night at work a taxi driver I didn’t always get along with and I were sitting outside the garage smoking, and having a coffee. He turned to me and said, “Sarah, what are you doing?” “Well John I’m sitting here…” “No, you daft moo, with Mark. He’s not Steve, he won’t ever be like him, he won’t ever be him. No matter how much you want him to be. He just isn’t so you need to stop it, now! You get me? It’s only hurting you, not helping, it never will.” I looked at John, tears rolling down my cheeks, “I miss him John, it’s not fair, he should be with me, not being Annie’s pet husband, it’s wrong, it’ll end badly, I just know it.” And unaccustomed as he was to random weepy women, and show’s of affection, he hugged me tight, and said, with a great deal of foresight, as it turned out, “Don’t worry honey, it’ll all come right in the end, you two are meant to be, just keep the faith, don’t ever let go, and you’ll be together someday, I just know it.”

Wheelchair Couple Coffee

I don’t think I need go into the details of the following relationships, of which there were three, suffice to say, I ended it with Mark only a few days after John and I had our little talk. Soon after this my husband who was arrested for GBH with intent, skipped bail, and threatened to kill me. The council refused to move me until he tried, and I had been vaguely seeing the guy who fixed the company vehicles he offered for me to stay with him, we spent three years together, he was an alcoholic too. I had several affairs during that relationship, and as became my habit, when someone got too close I longed for Steve again, and sabotaged the relationship.

Frying Pan To Fire

I moved on, and had a short lived, sex based relationship with a soldier, 12 years my junior it was very short lived, but mostly enjoyable. I then got involved with someone 20 years younger. We were together for almost six years. During our relationship Facebook was invented and became a world wide access point for people to bugger up their lives, friendships and relationships. I found Steve and sent a friend request which he accepted. That was in December 2009, we didn’t speak much to start with, not directly. Annette didn’t like it so we commented on each others photo’, and generally kept track of each other. Steve has told me since that he was overjoyed when I sent the request. He had been looking for me but only remembered my married name, which I no longer used, and had bypassed me several times while searching Mark’s friend list, thinking it wasn’t me.

In August 2010, Annette got caught out in one of her numerous affairs, and while on the family holiday, announced the marriage was over, had been for many years in her eyes, she spent the insurance money, that Steve had got, and when that ran out, she started visiting sex sites, and meeting random men for sex. The bottom fell out of Steve’s world, he knew they had been in trouble for years, but she had systematically destroyed his self confidence. By the end of November we were in regular contact. In December we had some of the worst snow in year’s. My car was broke down in -20 degree temperatures and was out of action for three weeks. For those weeks, because our house is so remote, Luke my partner at that time went to stay at his mother’s. So he could catch the train to university. And I was alone with my two sons and my laptop.

Sweet Contentment

Steve and I talked for hours on end, with me filling in all the gaps in his memory of the crash, and of the following weeks. Telling him all the stuff that happened to me in those ten years apart and out of touch. He told me how awful that everything was after he came home, how every time they argued she threw the accident in his face blaming him for fucking up her life. When she had alone decided he would go back to her after discovering how much money he would get, plus all the benefits that came along too. Steve recalled, “She took me back to get my money, and pulled me away from you for financial gain, the spinal unit told her I had five years, six max, and once I passed six, that was it.”

By Christmas my car was fixed but my life was in turmoil once again. Steve thought I was happy with Luke, but I wasn’t. I felt like his mother, he was lazy, mean to the kids and our sex life was none existent. After about two weeks of arguing with myself, while Luke was fixed to the Xbox, I started an early evening chat with Steve. I had told him about my fling with Mark very early on during our chat’s and then said I had something else to confess, “You slept with Steve (Steve’s oldest brother) too.” He joked. “God, Steve, no! Credit me with some taste.” I replied, “What then?” he asked. I took a deep breath, and began to type, this is what I said: Steve, it’s you, it’s always been you, I am in love with you, I always have been from the moment we met, and that hasn’t changed. In all these year’s I never stopped thinking about you, wanting to be with you, see you, I am so unhappy with Luke, I just want you…

There was a long pause, it seemed to last forever. Then, “Really? when we started talking so much, I thought for a minute, maybe, hoped, but dismissed it, decided you were just being a mate, but you really still feel that way, you know I’m a cripple, don’t you Sarah? I didn’t get better Baby Girl, you know all this right?” “Yes Steve, I know, why would it make a difference?”

There’s things you need to know he told me, we talked a lot on MSN, when we got kicked off Facebook chat for using it too much. He told me all about his injury, his needs, and the hardest thing he ever told anyone ever, about his erectile dysfunction, and that he and his wife had never had sexual intercourse since his injury. But there are ways we can he said, she just couldn’t be bothered. He wrote it all on MSN with his Dragon dictate software, and the pause, while I read it, seemed like a eternity, the next thing he wrote was “Oh no, what have I done, it’s too much. I want to make love to you and I might not be able too… say something Sarah.”

I answered him, immediately, “No, Steve, I was just reading it, carefully, so I took it all in, so, tell me, what can we do, for us to be able to make love?” His response was one I will never, ever forget…” Oh God Sarah, you really do love me, and want me, don’t you, do you know, how I write text messages, let me tell you, I write them with my tongue, I can drive you to total ecstasy with my tongue, you’ll think you are dying with pleasure, I promise you, I’ll make you come, for hours, and when you think you’ve had enough, you’ll be begging me for more, I can satisfy you more than any man has ever before I promise, but we may not be able to have actual sex, do you think you can spend your life that way?” “Yes, Steve, oh my God yes, I am turned on just thinking about it.” “Good, and there are tablets that can help with erectile dysfunction, I tried Viagra but it made me dysreflexic, and Annette didn’t want to have proper sex with me anymore she had plenty of that elsewhere”

That conversation took place in the first week or so of January 2011, Annette had met a new guy online and stayed with him most weekends, which became four or five days, leaving Steve with her two kids from her first marriage, and her and Steve’s two son’s, who when they said they were splitting both opted to stay with Steve. We spent loads of time on the phone, having both taken out a contract with the same mobile network, we talked endlessly about before the crash, and after, and laughed, a lot. we sent dirty texts, he drove me to orgasm by talking to me, we had phone sex, my vibrator got a lot of use in those weeks, he loved to hear me coming while I gasped his name, and screamed it too.

Annette and her new man found a flat together, they were moving in on the last day of February, I arranged to go and see him, that weekend, the 3rd of March, I lied to Luke about where I was going, Steve had said he would hold me to nothing, until he looked into my eyes when I first saw him, and knew I meant it when I said, to his face that I love him, and his spinal injury changed nothing.

Quadriplecic Love

I arrived at his house around midnight on the Thursday, Callum, his 13yr old son let me in, and I followed him upstairs, I was so nervous, it had been so long, what if I was not how he remembered me, what if he decided it was a terrible mistake. I walked into the bedroom. Steve was in bed as the carers come to put him to bed at 9.30pm, I walked to his side of the bed, all the nerves melted away, we looked at each other for a few seconds, and he said, “Hi Babe, been a while, you look just the same as I remember.” I leaned over and kissed him, we forgot for a second that Callum was there, and he kissed me back passionately, and then said, whoa, children! Callum stayed for twenty minutes, went and made a cup of tea, and then, bless him, made a tactful departure.

Fatal Rapture

In minutes, I was down to my red (Steve’s favourite colour) knickers and bra, and in bed, in his arms. “Get that bra off, this instant, I want your nipples, where I can get them.” I did as he asked, “Come here, then, but remember you are the boss, you say how far we go, or not.” And that night, my nipples got more attention than they had ever had before, and I was gasping for breath by the end, Steve is super sensitive around his neck, shoulders, ears, and head, and I worked this out very quickly. We fell asleep, with Steve’s arms wrapped around me, and his body curled towards me, my knickers lost somewhere on his bedroom floor.

The next morning the nurses arrived, at 8.30 to do bowel care, just walking in like they owned the place, I had in the night kicked the duvet off me, so the sight that greeted them was me naked, wrapped in Steve’s arms, they didn’t know where to put themselves, but made no sign of leaving the room so I could cover myself up. Steve woke up, and said, can you get out, please, Sarah needs to get some clothes on, she can’t stand around on the landing naked while you do what needs doing, can she? they went out onto the landing, and I found my dressing gown, and dragged it on, I went and found the kitchen, made coffee, and waited while his bowel care was done, I could hear them, questioning him, about me, him telling them, that we had known each other for years, and get used to my being around. Is this the new girlfriend then Steve? Yes, his very firm reply.

It was an amazing weekend, the second night he did as he promised with his tongue, by far  the most stable position for this is me facing his feet, where he can get to every part he wants with ease, but I like to face him, because he likes to watch my face as I come, and look into my eyes as he works me into a frenzy, but that way, plays hell with my legs, which start to give way. “Turn around Sarah, I want that cute little arse in my face.” so I do, and in minutes I am experiencing the most intense orgasm I have ever had in my entire life.

My body takes over completely, rocking back harder and harder against the firm pressure of his tongue, while I scream his name, over and over, gasping that I am coming, like he was in any doubt! And just when I think it’s stopping it washes over me again, he pushes his tongue inside me, moaning softly as he does so, pulling me harder towards his mouth, murmuring “Come on Baby, there’s more I know there’s more” And he is right, I push back again, “Oh god, Oh Steve, Oh please, I can’t, can we stop…No, don’t stop, don’t ever stop Oh Steve, I’m coming.” A muffled groan is the only reply, and a giggle, as I change my mind about a break, and then change it again.

While this is happening, I glance at his penis, which with some attention from my mouth had hardened, and then changed its mind, but is in my hand anyway, and it’s hard, properly, “Steve, you are hard! stop a sec, I keep a firm hold, and switch back to facing him, then gently guide it inside me, his face registers surprise, I can feel that, he says, not all over but the warmth, the pressure, oh Sarah, you are a clever girl, I move gently, so we don’t lose it, feeling him hard inside me is just wonderful.

Looking into his eyes, as I move up, and then gently back down, then keep still, and use my fingers to make myself come, at this point, as I do, his eyes widen, in surprise, I can feel you tightening on it, and then he says he has this odd, fluttery feeling in his stomach, which he says is so pleasurable, and I can feel him hardening more inside me, this feeling intensifies, then slowly stops, I think that that was the first time I had an orgasm since my injury, he says, and that was just well WOW.

Wheelchair Love Lasts

So, although there is some erectile dysfunction, with the right stimulation, it’s not all the time, we use a drug called Cialis, if we want it to last longer, and be harder, but most of the time, I can get it to become hard, with a combination of him watching me give him oral sex, and the use of a mini vibrator called a bullet, or just him giving me mind blowing orgasm’s

Quadriplegic Love Lasts

The weekend flies by, and it’s Monday, before I know it, we have time to go to lunch with Victor, a friend of Steve, since they were 17, he is a lovely guy, but his and Steve’s friendship has suffered over the years, due to Victor’s intense dislike of Annette, and her treatment of Steve, and herself serving reasons for taking him back. He told me all about it as time went on, just before the accident.

Victor clearly remembers Steve visiting with Kathy, and telling him, don’t get too used to her, it won’t last, don’t let Justine (Victor’s wife) get too friendly, there’s someone else, I have fallen in love with, but Fuck, it’s so complicated, she’s married, but he is a dick, and I think she is scared of him, and she’s pregnant, and no it’s not mine, but Victor I want her and I know she feels the same.

I just have to get out of this, I can’t deal with her, she’s suffocating clingy, and keeps on about us getting custody of the boy’s, she doesn’t know anything about kids, and I just don’t love her, not that way, what the hell am I going to do? Victor told him to tell the married woman how he feels.

Then we are standing in his back garden, having a cigarette one day, and Victor suddenly realizes he saw me, the totally devastated pregnant woman at the hospital was me, and it all slots into place, and he say’s, “And you still love him after everything that’s happened, incredible.” So friends believe me when I say quadriplegic love lasts.  After all the pain, distance, and time, plus our many obstacles and mistakes, our love for each other has endured to this day.

Paraplegic Lover

My Paraplegic Lover

I first met my paraplegic lover Chris online a year ago. There was an instant “click” as we are both from Midwest USA, the same age, liked the same music, and made each other laugh. It was wonderful to laugh with someone again. Each day we learned more about each other and the relationship grew. Even though we had never met in person we were like two peas in a pod.

Two months later we made the decision to meet and he flew to Ohio. This was the first time he had ever been on a plane. His only previous experience with flight had been a helicopter to the hospital after his car accident in 2002, which resulted in L4-5 paraplegia and a below knee amputation on the right. Obviously we had discussed “the chair” but it was rather irrelevant to our relationship at the beginning- just the way he gets around.

Paraplegic Lover

Paraplegic Lover

I have to admit I was a tad apprehensive while waiting for the plane to land  about silly things, like getting his chair in my car (as I have a VW beetle), how much could he feel, how would I approach intimacy etc. We had talked about being intimate as we believe open and honest communication is key to a relationship, but talking and doing are two totally different things. I ran across the airport, threw myself onto his lap (much to his surprise and the surprise of people waiting for luggage) and all was right with the world. I knew immediately he was the man for me and this relationship could work.

As I always say, and mentioned above, the most important advice I can give, is communicate, communicate, and communicate some more. He talked me through getting his chair in my car and our week began. We went out to eat but ended up spending most of our time in each others arms just getting to know each other and each others bodies.

Even though he has no feeling below T12, we found out that there are so many different ways to please another person, and satisfy each other, other than “traditional” sex. I was in heaven with my paraplegic lover. The neighbors banged on our wall which really made me laugh. Mapping his body, finding those sensitive spots was such a turn on for both of us. We talked about his accident, our pasts, our future and made a plan to see each other again. All too soon that first visit was over.

Two months  later he flew back again. We were talking 16 hours a day by phone, e-mailing, etc yet we really wanted to be physically in the same location to see if the magic still happened. I went for rides on his lap at parks, we saw movies, and did what every other couple does- we just got more looks from people and some even made snide remarks, such as “can you believe she is sitting on his lap kissing in public?” It just made us laugh harder, as if people expected us to hide away just because he was in a wheelchair.

For those who are leery of dating a paraplegic or anyone in a wheelchair – don’t be. He has expanded my horizons so much just be being himself. Intimacy is different than for an able bodied couple, but let me tell you that upper body strength is awesome and we’ve learned to please each other to a degree that would make able bodied people  jealous.  His mouth, his hands, the way he looks at me are so intense and when we stare into each others eyes its as if I feel him touch me. Even though my paraplegic lover Chris can’t feel me – in a traditional sense – he has many areas of sensation that other men don’t have.

In my opinion, what some men don’t “get” is that the brain is the largest sex organ in your body. So you can learn to “feel” in a different way and achieve orgasm in a more mental way… like your brain is exploding with pleasure.  It’s so intense for both of us that I wouldn’t trade it for anything. And oh my there should be books about the hows and joys of wheelchair sex.

As for eating out and things like that,  we just make sure where we are going is accessible, and add a little more time for transfers. If you are considering dating someone in a chair just relax and have fun with each other. Communicate, talk things through, and never let someone tell you it can’t be done. Throw the books out the window, ignore any odd looks you get (or if you are like me just smile and wave as you ride on your guys lap) and since every SCI is different don’t be afraid to experiment!

Don’t let odd questions from people get you down just smile and answer in whatever way you feel comfortable. Because, people tend to ask intrusive things. Children are curious, not afraid to say anything, and generally will find you to be the coolest ones around. We overheard a boy in the grocery say, “Mom, I want a THAT for Christmas” THAT being a wheelchair with lighted castors.

People have also been very helpful to us. We have a large military base in my town and a large VA, so more than once people have come out of nowhere to see if he needs hep transferring or if I need help with the chair. Our usual answer is, “we’ve got this, but thank you” and once a woman approached Chris, said “this isn’t your first rodeo, is it?” and then danced off with him at an outdoor concert, while I took pictures. Most people do mean well.

After further meetings here and in his home state, he has moved in with me as of August and we are blissfully happy. I’m not saying we never have things to overcome, but that’s true of any honest relationship. What we do have is so much laughter, so much fun, and so much appreciation for the little things in life. Most of all… we laugh :) Remember, scars have stories of strength and the will to survive to don’t be put off by silly things.

If anyone has any questions, I’m always willing to answer and will continue to keep you updated. We are officially engaged, so more to follow on that another time  and also more to follow about traveling by plane with your chair and the things to know beforehand that we have learned the hard way :)

Good luck to all of you- don’t be afraid to try. Together you can overcome anything.

Amanda

Dean Pusell Love the Universe in You

Dean Pusell Love the Universe in You

In the summer of 1988 the smell of salt hung in the air by the beach in Australia. I decided to escape the heat and go surfing with friends. We all ran into the water diving in at waist deep. As I floated to the surface face down unable to move. I knew the blood in the water was mine. Thankfully my friends noticed and rolled me over. Unable to feel from my bottom lip down I sucked in a big breath of our precious sky. Funny, I lost a lot of blood but not a tear in the ocean that day.

Dean Pusell Love the Universe in You

Love the Universe in You

I was placed in a halo brace to stabilize my quadriplegia and for the next fourteen months in hospital I was nurtured and doctered to use a cold steel wheelchair for the rest of this mortal life. I was only sixteen. After re-learning how to dress and feed myself it came time to write. Though it was most difficult I not only learned to write again, I came to allow my feelings to flow through my hands, drawing and painting over the next few years.

From 1994-2005 my creative works featured in 65 exhibitions around the world involving surreal painting, charcol drawings, collage, photography and poetry. I even turned my hand to writing lyric’s for a blind man to air on public radio. It lead to more television comericals and interviews.

For the last 18 months I have squinted through my heart, purely absorbing this mystically breathing life of spirit, breeze, and vibes- from pulse to paper in “Love the Universe in You” my scribbles began happily.

In a minds gentle silence and a hearts soft voice this smiling light was healing in a peaceful surrender, what grew in this pink and purple dusk amongst the closing lavender lotuses was the birth of a waking dream… piercing stars now whispered a gentle bliss. – Dean Pusell

“Love the Universe in You” is my latest published book. It was written with a glowing smile, deeply feeling the dual meanings of the title. Grab a copy and find your bliss.

Peace and smiles to all,
Love Dean Pusell
DeanPusell.com

sarah casteel wheelchair tennis champion

Sarah Casteel Wheelchair Tennis Champion

Sarah Casteel two time national wheelchair tennis champion suffered a paralyzing spinal cord injury when a drunk driver slammed into the car she was driving on Independence Day in 2002. Tragically her 15 year old brother in the car at the time, did not survive the accident.

sarah casteel wheelchair tennis champion
Sarah Casteel Wheelchair Tennis Champion

Casteel, 18 years of age, was taken to the University of Missouri Hospital where she not only had to cope with the loss of her younger brother but the loss of her mobility. Now a paraplegic, she would not walk again.

Sarah remained in the hospital for three months before returning to her home in Greenville, South Carolina to continue with physical therapy.

Life with Paraplegia

Prior to the accident Sarah Casteel was an all-state volleyball player who excelled in tennis, competing on the boys’ tennis team in high school because there was no girls’ team and later played for Stephens College in Columbia, Mo. In her freshman year of college she wanted to study fashion design and art, but that all changed in an instant.

After the accident Casteel returned to Stephens College where she quickly discovered it was not wheelchair accessible. Many of her classmates were less than compassionate unfamiliar and uneasy with her new found paraplegia.

It was not good. It was weird; my life had changed so much. I found out I didn’t have friends anymore. A lot of people I thought were my friends disappeared. I guess they couldn’t deal with it. It was very hard. I decided this was not the place for me anymore. – Sarah Casteel

Casteel began looking for another school, one that could accommodate her wheelchair and improve her quality of life. She found such a place at the UTA (University of Texas in Arlington). She applied and received a wheelchair tennis scholarship to attend the UTA.

The occupational therapist I worked with in Missouri actually introduced me to wheelchair tennis, so I started looking for a school with a wheelchair tennis program, and the University of Texas actually was offering a scholarship for wheelchair tennis. I made friends there and I was No. 1 on a team of four. I competed against other colleges and in national tournaments. – Sarah Casteel

National Wheelchair Tennis Champion

Sarah Casteel

Sarah Casteel

The two time USTA (United States Tennis Association) national champion 2004-2005 Sarah Casteel has also competed in the World Cup held in the Netherlands. Graduating from Stephens College in 2005 with an Inter-disciplinary Studies degree with a focus on biology, she decided to pursue a career helping others.

A connection made with an occupational therapist in Missouri inspired her to become an Occupational Therapist. This led her to the Medical University of South Caroline (MUSC) where she graduated in 2009 with a Master’s in Occupational Therapy.

Training for a spot on the USA Paralympic wheelchair tennis team to compete in the Beijing Paralympics 2008 was interrupted when the steel plates and screws that fused her spinal vertebrae together began to irritate. After further spinal surgery and several week’s recovery, the unstoppable Casteel was back in training with her coach, Crafton Dicus, and competing nationally. Becoming a member of the U.S. Tennis Association High Performance Wheelchair Tennis Team.

Wheelchair Tennis Paralympic Games

Now with the guidance of pioneering wheelchair tennis coach Chuck McCuen, striving to hold a place in the World Cup Team 30 year old Sarah Casteel, a world-ranked wheelchair tennis champion feels she has a shot at representing her country in the Paralympics Games in London 2012. With the formidable tenacity Sarah Casteel has approached life with and a mean top-spin backhand that could snap your head off, whether Sarah makes the Paralympic team or not she will continue to inspire as all.

Quid Pro Quo stars Vera Farmiga and Nick Stahl

Quid Pro Quo

Quid Pro Quo Poster

Quid Pro Quo Poster

Latin meaning “this for that” an equal exchange, Quid Pro Quo is the first feature film by Carlos Brooks released by Magnolia Pictures in 2008. Actor Nick Stahl who played John Connor in Terminator 3: Rise of the Machines, as well as roles in Spin City, The Thin Red Line, Bully, Safe Passage, and Sleepwalking, plays the central character Isaac Knott, a semi-paraplegic wheelchair reporter in Quid Pro Quo.

As a New York public radio reporter Isaac Knott begins to recount a story about himself live on-air. Telling when he was eight, his mother and father died in an automobile accident that left him in a wheelchair. Almost forcing us to feel the dark curiosity that turns heads when passing an accident scene Isaac lays his trauma out welcoming.

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Continuing his story, Isaac reports that he recently received an anonymous tip from someone identified only as “Ancient Chinese Girl.” She tells him a perfectly able-bodied man walked into an emergency ward downtown, and attempted to bribe a doctor into amputating his leg. 

In the course of his investigation, he meets Fiona played by Vera Farmiga, the aforementioned Ancient Chinese Girl. Though she is neither ancient nor Chinese, she is nevertheless supremely attractive, highly intelligent and therefore very secretive keeping to herself. Fiona guides Isaac to a netherworld of people afflicted with a seemingly perverse desire to be disabled.

Seduced by her beauty and intelligence Isaac is quick to suspect that Fiona herself may be a “wannabe.” When he confronts her she protests, “I don’t want to be paralyzed, I already am paralyzed.“ Isaac realizes he must decipher the puzzle of her fantasy motivations before they manifest into an all-too-real, if not fatal, reality.

Along the way, he navigates a semi-surreal world of talismanic items like an antique Milwaukee Brace, a pair of shoes called “spectators,” and a paralyzing chemical called “Ginger Jake.” Events become increasingly extraordinary as Isaac discovers that Fiona does indeed have a terrible agenda, one that resonates in long buried memories of his own past.

Production Notes

Many of the best detective stories evolve in such a way that the story ends up that the detective has actually been investigating himself. Quid Pro Quo’s modern day detective is a public radio investigative reporter Isaac Knott (Nick Stahl) who just happens to be confined to a wheel chair. In the course of doing a story about disability wanna-be’s, Isaac traverses a surreal world of fetishism and transgressive eroticism that recalls the unique perspectives of Luis Bunuel and Alfred Hitchcock.

In many ways, Isaac’s “story” is really a journey into his psyche and personal fears. And the totemic clues he discovers during his investigation: a wheelchair, a Milwaukee brace, a pair of shoes are always more than their literal reality. In the context of the film, these items are objects of fetishistic worship. And as such, they become transcendental. A wheelchair is a wheelchair, until it is viewed as a device that possesses the power to delineate someone as “special,” in other words, “handicapped.”  It then becomes not so much a conventional transport as a machine that creates pity and empathy.

Granted, all this presupposes a perverse perspective into the way we look at things. But in the course of Isaac’s investigation, he finds Fiona (Vera Farmiga) — or she finds him — and she offers him a window into a dark place that exists somewhere between reality and dreams. Her life’s aspiration is to be crippled, or at least perceived as such. She’s beautiful and successful, yet she longs to be physically destroyed to regain some spiritual transcendence in her life. Her complexity, along with her erotic compulsions, prove irresistible to Isaac. 

This quixotic entanglement between reality and its reinterpretation through desire is the heart and soul of Quid Pro Quo. Isaac is drawn to Fiona’s dark side because somewhere in the strata of her perversion lies an underlying truth about himself.  He is confined to a wheelchair because of an accident. What can he possibly learn about himself from Fiona’s desire to be like him? In Quid Pro Quo the answer of course is everything.

Carlos Brooks Director

Commenting on the tone of his first feature film, director Carlos Brooks noted:

uid Pro Quo Director Carlos BrooksI told the actors in rehearsal to think of the story as unfolding entirely within that moment that transpires between deep sleep and wakefulness. So from the earliest rehearsals and creative discussions, all the way through scoring and final sound design, we approached the film within that framework, that the film itself should be experienced as a kind of dream.  Even to the extent that we avoided the usual overtly “dreamy” film making and editing tricks, in favor of a straightforward style that would, like an actual dream, invite you to perceive it as real.” — Carlos Brooks

This article images and content has been produced here with permission of Magnolia Productions to streetsie.com and may not be reproduced elsewhere without express written permission from the respective works and copyright holders.

Graham Streets
MSC Founder

Resources

Andrea Dworkin Feminist featured in Life Magazine

Andrea Dworkin Through the Pain Barrier

This is the last piece written by Andrea Dworkin (1946 – 2005), feminist, author, disability activist, composed just a month before she died in 2005. Few knew she suffered from an agonizing bone disease for several years. She describes with grim humor her worst moments and why she felt she was starting to heal.

The doctor who knows me best says that osteoarthritis begins long before it cripples – in my case, possibly from homelessness, or sexual abuse, or beatings on my legs, or my weight. John, my partner, blames Scapegoat, a study of Jewish identity and women’s liberation that took me nine years to write; it is, he says, the book that stole my health. I blame the drug-rape that I experienced in 1999 in Paris.

Andrea Dworkin Feminist featured in Life Magazine

Andrea Dworkin featured in Life Magazine

I returned from Paris and finished Scapegoat over a period of months while caring for my dying father. Shortly after he died I was in hospital, delirious from a high fever, with infection and blood clots in my legs. I was there for a month. John had been told that I was dying. I forgot that in hospitals when one is dying, nurses abrogate the rules. John was allowed in after visiting hours; nurses would pull the curtain around my bed and let him lie with me. This was my happiness. Doctors tell me that there is no medical truth to my notion that the rape caused this sickness or what happened after it. I believe I am right: it was the rape. They don’t know because they have never looked.

“Every three minutes a woman is being raped. Every eighteen seconds a woman is being beaten. There is nothing abstract about it. It is happening right now as I am speaking.” – Andrea Dworkin

A few months after I got out of the hospital, my knees began to change. They lost their flexibility. Slowly they stiffened. As they stiffened they became sore. They started to hurt terribly as if injured but not visibly injured. I got a cell-phone – before they were ubiquitous – so that if I couldn’t walk any more I could call a car. I had given up on New York City subways: my knees could no longer bend enough to use them.

I went to an orthopedic surgeon. I was diagnosed with osteoarthritis in my knees. I was treated with the anti-inflammatory Celebrex and, when that didn’t work, its stronger cousin, Vioxx. Which was recently taken off the market by its makers because of a risk of heart attacks or strokes; I was on it for three years. I had cortisone shots in my knees, followed by prednisone. The cortisone shots, which are painful, worked only once. Then I could walk without pain; in joy I sat on my front steps and talked with my neighbor – inconsequential chat. When I tried to stand up, my knees were rigid and excruciating. I managed to stand and swivel around; I took the remaining two steps up to my front door and used the door to drag me inside. I had had an hour-and-a-half of freedom.

My mobility lessened as the pain increased. Eventually I found myself housebound. I could walk only a few steps at a time, intimidated by the pain and the refusal of my knees to bend. John and I lived in a three-floor house. I could barely make my way up or down the steps. I’d crawl up the steps on hands and feet. I’d try to go down on my butt, step by step. The kitchen was on the first floor; the toilet on the second; my desk, books and shower on the third. My physical world became tiny and pain-racked. I stayed in my bed when I could. John brought me up food. I’d go out only to the doctors.

The orthopedist started giving me narcotics, most of which contained acetaminophen, a common, nonprescription analgesic. My pharmacist persuaded the doctor that the liver damage caused by too much acetaminophen was more dangerous to me than stronger drugs. Through her advocacy I got a drug normally given only to cancer patients. It was a little yellow lollipop and when in pain one was supposed to lick. I licked a lot. I was told that I had to have my knees replaced. The prostheses are made out of titanium and plastic. I had both knees replaced at once, a normal practice now but unusual even a few years ago. My surgeon would later tell me that if I had had one done, I would never have returned for the second. He got that right.

“Institutionalized in sports, the military, acculturated sexuality, the history and mythology of heroism, violence is taught to boys until they becomes its advocates.“ – Andrea Dworkin

I still don’t know what he did to me but I came to the conclusion that the operation was barbaric, involving as it did the sawing out of the arthritis, which meant sawing through bones. It was like being kneecapped, twice, or having one’s knees and bones hammered and broken into bits. After the operation I was in a nightmare of narcotics and untouchable pain. There were morphine shots. I asked for them and got them often. Even morphine shots in the upper arm hurt.

I had a hallucination but it is still real as rain to me. I was in Virginia Woolf’s house and I was happy. But “they” wanted me to go down the stairs. I can’t, I begged, I can’t. My hospital bed was at the top of the stairs and I was afraid that they were going to push me down. I saw the steep decline of the steps. I couldn’t get over my visceral fear of falling or being pushed or being turned over from the bed down the flight of steps. I kept experiencing my bed as being on the edge of a precipice.

One day, I remember, a nurses’ aide braided my hair and I felt cooler, cleaner. I was on the bedpan, but raising myself up to use it – knees – was so fiercely painful that I would rather lie in my piss.

Then the day came when I had to walk. There was a vinyl chair next to my hospital bed. The physical therapist’s name was Carl. He was like a tree trunk, big and solid. You can do it, he said. I’ll help you; we’ll just go over to the chair. It was impossible, outside the realm of the imaginable. Carl let me hold on to him in a desperate, tight embrace as he carried me over to the chair. My legs dangled, my knees twisted, I sweated, I screamed. See, you could do that, he said, without a shred of irony. I had to sit there for two hours, which meant knees bent but not weight-bearing. Nurses came by and gave verbal approval: good dog, good dog. Eventually Carl carried me back to bed.

Andrea Dworkin

Andrea Dworkin

Pain is a four-letter word. There is no way to recreate it through memory. It is not like the flashback arising from traumatic events such as rape or battery. The flashback is as if it is happening now, in the present, even if it is from decades ago. Pain can be recent yet inaccessible to immediate experience. Torturers know that people can’t die from pain. The consequences of pain – for instance a heart attack – yes, but not from pain itself, however intense. The horror is that no one dies from pain. This means that suffering can be immeasurable, enduring, without respite. So it would be for me for the next two years.

I was taken to an institute for physical rehabilitation. A nurses’ aide took me to shower in a wheelchair. I used a walker from the cot on which I slept to the wheelchair, maybe two miserable steps. I had two responsibilities – take my pain medications (Vicodin or Percocet) and show up at the right room at the right time for the scheduled rehabilitative class. I was not allowed to go to class if I did not take the painkillers. In fact, the pain was unrelenting. I lived for the next pill.

Physical therapy is based on tiny movements, increments of change that almost defy detection; it is built on the repetition of the minuscule. Yet to the hurt person these motions or movements or minute steps are hard. The first time is daunting and the 10th is like climbing Mount Everest. I sit in a big room, my wheelchair in a big circle of wheelchairs. Big is good because it means that my turn does not come often. I stand up by holding on to a walker and take a step. Then I step back and sit down. The cycle is hideous. The steps with the walker increase to two, then three. After several weeks I am assigned a means of locomotion: crutches.

Rehabilitation also includes so-called occupational therapy: throw a ball around in a circle; put round pegs in round holes; stand up, arms on a table, and read a page of a magazine; water a plant; play checkers or cards; and the pièce de résistance, cook and serve a simple meal. I am guided in the intricacies of shopping while crippled; I learn how to use a “grabber” to latch on to things I have dropped or cannot reach; I am taught again how to put on shoes and socks and tie shoelaces. I also have to meet the institution’s psychologist once. I keep getting called back. When I ask why, I am told that I am “interesting.” Well, yes, I think, I used to be.

The narcotics help me deal with the psychologist but the physical pain simply marches on. It does not lessen or change or stop. I learn three rules in my occupational therapy classes: never hold on to anything that moves; if it rains or snows, stay inside, even if that means cancelling doctors’ appointments (to those medicalised this is nearly profane); and kick the cat – if a cat curls up in front of your feet, kick it away. I learned to use my crutch to kick the cat. I will go to hell for this.

On discharge, social services are provided. My male partner is not expected to be a care-giver. I am sent an itinerant nurse, a young, poorly paid and badly trained social aide to help me with baths and to do light housework, and a freelance physical therapist who will do the drill: stand up, take steps, bend your knees, and – the killer – stand on your toes. And on discharge a wreck like me is sent to a “pain management centre.” Despite my small successes at physical rehabilitation I am in agony. I spend almost all my time in bed, a bed of nails, all through the knees.

The pain management centre is run by Curly, Larry and Moe. First there is a 10-page questionnaire. Rate from 1 to 10 your pain (I modestly assert an 8; my social conscience, atavistic as it is, tells me that there are others in more pain). Rate from 1 to 10: is your mother dead; how many people in your family have died of cancer; how is your sex life; how many times a week do you have sex?

They want me to undress so they can examine me. This is absurd. I refuse. There is a table they want me to lie on that they claim lessens pain. The bottom line is that New York State regulates narcotics to such an extent that regular doctors are reluctant to write prescriptions for painkillers; and so Curly, Larry and Moe at pain management put you through whatever rigmarole and then write prescriptions, none of which, according to state law, can be refilled. One is in a cycle of coming back for new prescriptions and new indignities every 30 days.

Curly eventually puts me on Percocet, fentanyl patches and methadone. I am on these drugs for nearly two years. I become slightly indifferent to the awful pain. My speech slurs and my memory is impaired. It is during this time that I write my memoir Heartbreak. I want to remember some good things in my life. I work for one hour a day. The narcotics do not make me Coleridge; but I hold my own.

One day I wake up and the pain is gone from my right knee – as if God had intervened. The pain in the left one is the same. I begin to go outside on my crutches. I can walk half a block to my local Starbucks. One day I sit there, still on my meds, and I see the ballet going on outside. The sidewalk is heavy with pedestrian traffic. They are so unselfconscious, these normal walkers. They have different gaits; they move effortlessly; each dances without knowing it. I used to be one of them. I want to be again.

The anti-drama of small gesticulations continues, this time in physical therapy several blocks from where I live. My left knee is still rotten. After another year of physical therapy they give me a cane. I put away all the crutches and other signs of what I call “disability chic.” I can sort of walk. The cane means victory. The pain in my left knee keeps me on my meds. Over the course of another year, that pain lessens. It’s a whisper, a shadow – it goes. I give up the pills, though I go through a nasty withdrawal from methadone.

Alas, there is no happy ending. John and I move to Washington so that he can take a job as managing editor of a large-circulation magazine. We live in an apartment without steps. I am on the cane. I go into physical therapy because, unable to stand up straight, I hunch over the cane. A few days later I am at the kitchen table reading a magazine. I stand up to get something and my right knee cannot bear any weight, none. I can’t use it because I can’t step on it. I have no pain; I have had no warning. I get to my crutches, which are in a closet. I need both of them in order to move. My right knee remains useless.

The physical therapist determines that the quadriceps above the knee has stopped working, because imperceptible pain occasions the quad muscle to give out. Then my knee buckles and I fall. It is dangerous to fall. I see the physical therapist twice a week. The orthopedic surgeon (“a genius with knees,” says my internist) puts me in a restrictive brace that allows my knee to bend only so far. That way, if my knee fails, I am unlikely to fall. After nearly a year of physical therapy my quad muscle is not much stronger and my knee still buckles. The surgeon sends me to a rehabilitation hospital where they make me a new brace, specifically fitted to my leg.

This brace works on the opposite principle to the first one: it immobilizes the knee so that no buckling is possible, thus, no fall is possible. It takes months for artisans to make the brace. It goes from beneath my calf to the top of my thigh. It is made of a black space-age material created to go to Mars or Saturn. Nothing makes it bend or stretch or break. It is completely unforgiving. I call it Darth Vader. It is the principle of evil incarnate.

The straps that attach front to back are Velcro. I am supposed to lock it when I walk and unlock it when I want to sit. The brace is worn under my pants leg so no one can see it. Each manipulation is distinct: in public locking it makes me look as if I am masturbating, and unlocking it makes me look as if I am fondling my thigh. The brace must be very tight and positioned perfectly to work. It takes me nearly two months to learn how to put it on and use it. I lose my balance in efforts to lock it. Once I flip backward, magically landing on a chair.

Self-respect demands that I clean up the faecal mess that my cat has made. It is the immobilized knee that makes bending down to the floor fraught with peril. I start falling and know that I must not hit the floor. I fight against gravity, my fingernails clawing at the walls and my hand grasping for the door frame. I know that if I fall I probably will not be able to get up. Somehow I raise myself. I was slow with the first brace. I had to remind myself to be patient. With Darth I make the turtle look like the hare.

The landscape is one of hazard. Anything can reach up and bite me: a break in the sidewalk; leaves; sand; mud; a sudden slope up or down; a stone; some pebbles. Anything threatening balance is dangerous: first the brace itself; then wind, people running or bicycling or being too close or too many; a fast car; a step; a curb; a puddle; heavy doors; slick surfaces. Crowds are impossible and so are stairs.

I want to be able to carry a cup along with a plate to the kitchen sink in one trip. I don’t want to have to make two trips. The cup slips and breaks. This happens several times. Is it a small thing? I can’t bear it or accept it. I reject the extent of my disability. I find myself in a silent rage that stretches over weeks. I am utterly exhausted by my incapacity. I am worn out from walking. I am sick of physical therapy. There are little humiliations.

Andrea Dworkin Activist Keynote Speaker

Andrea Dworkin Activist Keynote Speaker

I keynote a conference on the Holocaust. The organizer picks me up. She is driving a truck. I try to climb up into it. She physically pushes me under my ass without permission, all the while talking to me in baby talk, put your tooshie there, keep your cute little fanny there. I turn to her and say, I am disabled, not stupid. A friend throws a party for me in Washington. I ask how many steps there are to the apartment. He doesn’t know. I assume he will get back to me. John and I go to the party. There are three flights of steps. I can’t get to the party being given for me. We could have given it in another venue, the friend says the next day. It cuts.

I go to a bar and need to use the rest room. The men’s is filthy, the bartender says; the women’s is two flights up. I use the dirty one. I go to a new movie theatre that has elevators and disability bathrooms but the polished stone of the floor is so slick that my crutches cannot safely navigate it. I am walking with a friend who suddenly looks at my crutches and says, you don’t want to be this way the rest of your life, do you? Her repulsion is barely masked. I feel unutterably alone.

Each disabled person has a story, often including pain, impairment, disorientation and loss of control. Each disabled person lives always on the threshold of separation, exile and involuntary otherness. Only a determined policy of public access can help to mitigate the loneliness. One needs to be able to enter buildings; have a cup of coffee; go to a restaurant, the theatre, cinema or a concert; attend school; go to lectures or readings; use public transport, bathrooms, hotel showers; go to museums and sporting events and political rallies.

One needs equal opportunity in employment. One needs to be integrated into the world, not separated from it; yet one has special needs, ones that able-bodied people rarely consider. The low consciousness of the able-bodied increases alienation. For mobility problems, one needs a new geography: kerb ramps; ramps in addition to steps; handrails; grab bars; high toilets; light doors; wheelchairs; room for wheelchairs in public bathrooms and hotel rooms; elevators; safety in floor surfaces including carpeting; entry and egress from public transport as well as acceptable seating; and a host of other considerations.

Other disabilities require other remedies. In 1990 Congress passed the landmark Americans with Disabilities Act, which articulated in great detail the requirements for making the world available to disabled people. This is a civil rights law that recognizes the exclusion of disabled people from the larger community as outright discrimination. The law had its impact because disabled people found aggressive trial lawyers to sue commercial and private venues for noncompliance. The plaintiffs went after big-money damages for violating the civil rights mandated by the ADA. Eventually it became clear that compliance would be cheaper than continuing litigation. Losing money does put the fear of God into Americans.

I have to say that the ADA increases the quality of my life, Darth notwithstanding. I get through airports in a wheelchair provided by the airline; John takes me to the zoo a few blocks from where we live [and] the zoo provides a wheelchair; local coffee houses to which I gravitate have disability-standard bathrooms; there are special seats for me in cinemas and theatres and in rock venues; there are kerb ramps at pedestrian crossings and ramps or elevators in addition to steps and escalators in most public accommodations.

In my neighborhood I see many other disabled people outside all the time. We are not rare or invisible, because we are not hidden as if in shame. And bless those nasty trial lawyers, whom George W Bush and the Republicans hate so much. Without them the ADA would be a useless pile of paper. For myself – despite physical therapy, the breaking cups, and my immobilized knee – in the middle of the night, worn down, I listen to Yo-Yo Ma playing Bach or Loretta Lynn’s Van Lear Rose; and I am, I think, healing. Surely music must be more powerful than bad luck.

Andrea Dworkin

Resources

The Broken Column a painting by Frida Kahlo

Frida Kahlo Spinal Injury Artist

Frida Kahlo (1907-1954) one of the most influential Mexican spinal injury artists of the middle twentieth century. Frida Kahlo painted images of the disabled female body. Striking self portrait’s of her own spinal cord injury and trauma. As a teenager in 1925 a tram car accident left Frida Kahlo with multiple injuries. She would endure a long and painful recovery.

Broken spinal column vertebrae, collarbone, ribs and pelvis, eleven fractures in right leg, a crushed and dislocated right foot, and dislocated shoulder. An iron handrail from the tram also pierced her abdomen and uterus. In Frida Kahlo’s paintings these injuries and her now seriously impaired reproductive ability transcend from the canvas.

Born in Coyoacán, Magdalena Carmen Frieda Kahlo y Calderón. Frida Kahlo’s artwork interweaves traditional Mexican votive painting and technical images of the body. Modern medical science (x-rays, surgical implements, hospital experience) fused with Christian icons of redemption through physical pain and suffering. In this way, Frida Kahlo painted an entirely new depiction of the female experience and form.

The Broken Column a painting by Frida Kahlo
The Broken Column by Frida Kahlo

Frida Kahlo Artwork

Frida Kahlo’s ground breaking artwork is among the first, and perhaps the most daring, to render a portrait of transparent, explicit, bodily trauma. Prior to her artwork pain was shown through gestures of agony. Scenes of crucifixion or martyrdom, as in the work of Kathe Kollwitz, Picasso’s Guernica. Or explicit gore in battle scenes and beheadings the likes of Salome, Jose Posada’s dancing skeletons, or any number of other mythological illustrations.

“I paint myself because I am so often alone and because I am the subject I know best.” – Frida Kahlo

Frida Kahlo’s artwork is particularly of interest to disability studies. Not only for the auto-biographical renditions of her spinal and other injuries, illnesses, and surgeries, but also because of the nature of the body she invents. Often the interior of the body is visible and continuous with the exterior. In a kind of psychic Mobius strip they become one.

Frida Kahlo Greatest Artworks

In her greatest artworks The Broken Column, The Two Fridas, Roots, The Tree of Hope, and Without Hopes, there is no clear division between inner reality and outer appearance. Thus the un-shareable nature of individual pain becomes explicit and felt. To look at one of Frida Kahlo’s greatest artworks is to punch yourself in the face. Her paintings scream a raging agony. A visible pain taken and shared in empathy.

Frida Kahlo the Movie

My jaw dropped when I saw the movie Frida. Played by Salma Hayek, the only woman who could make a mono-brow sexy. In the opening scene of the movie Frida suffers a chilling spinal cord injury, in a tram car accident. The movie clip below follows with her drug induced hazy dreams of dancing x-ray skeletons. Dreams that are very familiar to me.

Nightmarish visions dancing skeletons plagued my spinal cord injury recovery. All my life I’ve also seen dark shadowy figures like those in the movie Ghost. None bother me though. I get the feeling they are not out to hurt me. This video clip from the movie Frida is a little graphic. Any realistic life-like portrayal of a spinal cord injury accident will make you wince. And so I warn you this video clip from the movie Frida featuring Salma Hayek is very realistic.

Frida Kahlo Spinal Cord Injury Video Clip

Frida Kahlo Spinal Cord Injury Treatment

By the 1930s, x-ray technology had been in public use for some time. X-rays ended the concept of the opaque body. Public hospitals had also been established as places of collective community experience. Frida Kahlo demolishes the idea of a disabled body in pain being a shameful and hidden thing after her arduous spinal cord injury treatment.

Frida Kahlo bravely offers her body up in many taboo contexts. Her spinal cord injury and images of pain are never separate from her life at large. Never represented as a different sphere of experience in kind or degree. Her illnesses are fully in context with the rest of her life.

The examinations of marriage, sexuality, cultural patrimony, and family are the same visual icons as those in mainstream disability. Her paintings in the context of traditional images display the female body as a mysterious, irrational, and secretive vessel. It’s when Frida Kahlo’s spinal cord injury comes in fusion with her life on canvas she parts from, and directly opposes, mainstream disability paintings.

The baring of her body inside and out is more than a simple nude self-portrait. Her body is small and doll-like. It appears as a toy in the grip of immense forces. Not as a mythical goddess-like being. Embedding the matter-of-fact details of her medical experiences within a highly emotional language. Frida Kahlo demystifies disability and presents it both inside and out of mainstream. To open oneself to a Frida Kahlo painting is to feel the vulnerability of one’s own body. To immediately experience its transcendence through art.

Frida Kahlo Paintings Gallery

[nggallery id=13]

Frida Kahalo Fire in the Machine

Another aspect of Frida’s disability paintings is the mutability of her body (a factor of chronic but unpredictable illness). Symbolized in her portrayals of her body in partial trans-mutation with animals, partners, or the natural world in general. One can align her pairing with monkeys, Diego, and the Little Deer, with the way disabled people must render control or custody over their bodies. This is also evident in paintings of her doubled self as a reflection.

A kind of permeability arises, a thinning of boundaries that enables her to see herself as an amalgam of parts. History, love, and culture build her self-portraits. She depicts herself or others in isolation only when in a state of deep emotional pain and despair. Disability is often imagined as a state of weakness and withdrawal. Frida Kahlo gives us a world in which pain becomes a fire in the machine. A state of wild ferocity. A disrobing to reveal a body in full communion.

“I hope the exit is joyful and I hope never to return.” – Frida Kahlo

Frida Kahlo Final Days

Frida Kahlo died on July 13, 1954. The official cause of death was given as PE (Pulmonary Embolism, a blood clot in the lungs). Some suspect Frida Kahlo died from an overdose that may or may not have been accidental. An autopsy was never performed. Frida Kahlo had been very ill throughout the previous year. Her right leg had been amputated at the knee owing to gangrene. Frida Kahlo also had a bout of bronchopneumonia near that time. In her final days Frida Kahlo was said to be ill and frail. Barely a shell of the once vivacious artist. With such a strong embodiment in her paintings Frida Kahlo will always be loved by her fans.

Resources

  • Agence France Presse, Yahoo News (2007). Largest-ever exhibit of Frida Kahlo work to open in Mexico.
  • Cruz, Barbara (1996). Frida Kahlo: Portrait of a Mexican Painter. Berkeley Heights: Enslow.
  • Gonzalez, M. (2005). Kahlo –  A Life. Socialist Review, June 2005.
  • errera, Hayden. (1983). Frida: A Biography of Frida Kahlo.

Websites

Waterdance Wheelchair Movie Wesley Snipes Helen Hunt

The Waterdance Wheelchair Movie

In conjunction with Juraatmedia we present The Waterdance (1992). A true-to-life film showcasing the epic struggle through rehabilitation, dealing with paralysis and coming to terms with spinal cord injury and wheelchair life. This somewhat dark movie written by Neal Jimenez (after he was paralyzed in a hiking accident) sheds light on a rehabilitation hospital spinal unit and three newly paralyzed central characters. 

In this spinal unit people are transformed as each must adapt to their new reality. A social order develops with its own shifting loyalties and rules. The Waterdance captures the tumultuous spinal unit world and portrays it in terms that the general public can understand. 

Eric Stoltz left William Forsythe and Wesley Snipes with nurse pushing wheelchairs down street in The Waterdance spinal cord injury movie

Out for a stroll

Along the way, we meet the typically diverse set of characters seen in such spinal units who have nothing in common except similar disabilities. Their similarities prove not enough and an uneasy dynamic between them develops. Author Joel Garcia (Eric Stoltz) breaks his neck while hiking, and finds himself in the spinal unit rehab center with Bloss (William Forsythe), a racist biker and Raymond Hill (Wesley Snipes), an exaggerating ladies man. Considerable tension builds as each character tries to deal with his new found disability and the problems that go with it. 

We warn this movie contains coarse language, sexual references and other adult content not suitable for minors. It is rated R. 106 minutes. Enjoy!
   

Helen Hunt with spoon & Joel Garcia in halo brace meal time at the rehab hospital spinal injury unit ward

Anna feeding Joel in halo brace

 
Joel appears to adapt easily to his new found paralysis using free drugs, sunglasses and curtains dull to his senses. Internally he doesn’t know how he will cope with his life and lover Anna (Helen Hunt), who is having as difficult a time as he is. Anna is married to another man, and Joel struggles to decide whether staying with Anna, as they had planned, is the best thing for them in light of his new disability. 

Biker friends of the once tough guy Bloss seem more interested in his compensation payout using a lawyer from a TV add than his well being. Bloss has a meltdown in his wheelchair that makes him realize he must face the truth surrounding his accident. Only then he begins to temper his anger and channel his frustrations in more creative ways. 

After tipping their wheelchairs Raymond reveals to Bloss a dream about dancing on the surface of a lake to stay afloat, it becomes apparent that each of them must find his own Waterdance to survive his tragedy. Depressed about the separation from his wife and daughter, Raymond is discharged from hospital into a nursing home, where he attempts suicide. 

The Waterdance is one of a handful of films that deals honestly and wisely with the issues of disability, spinal cord injury and life in a wheelchair. It may appear depressing at first, but it also highlights how strong people can be when faced with life’s greatest challenges.

Tasha Amadi in her wheelchair became a quadriplegic at seventeen after diving accident

Fall And Rise Of A Star – Tasha Amadi

My name is Tasha Amadi; I’m seventeen going on eighteen and a quadriplegic. I loved to swim and wasn’t too bad at it either. I swam everyday for the 44 days of my first year of high school prior to my spinal cord injury. I was quite the dancer too, and well-known for these two things through primary school. I didn’t know anything about quadriplegia and never thought about it. That was about to change drastically.

Before our transition to high school, I remember sitting with my friends talking about how amazing high school would be, and how we’d always be bff’s (best friends forever) no matter what. Little did I know that wouldn’t eventuate for me. A bunch of my pals and I went to the same high school but seldom saw each other. I was bullied quite a bit and making friends seemed impossible; this was a big throw-off to me because I used to be considered a “popular girl” before high school. Life at the school became unbearable so I convinced my dad to transfer me.

Tasha Amadi in her wheelchair became a quadriplegic at thireteen after diving accident

Tasha Amadi quadriplegic after diving accident

This new school was great. I had a group of friends within days, we were together everywhere. There were no bullies, no drama, everything was fantastic. It was at this school where my life changed forever, I was only thirteen. On the 6th of March 2006, at around 3.00pm, my mates, the rest of the swim team and I were at practice for a swimming gala to take place the next day. Two of my mates and I decided to brush up on our diving. We were diving in a relatively shallow pool (don’t quite recall the measurements). It wasn’t the first time we’d done this. One of my pals dove in and came out, another did the same then I went in and didn’t come out.

The moment I hit the water I couldn’t feel my body. I floated around in the water face down, unable to get up. I saw blood in the water (I must have bitten my tongue) and heard my friend telling me to stop messing around and that I wasn’t being funny.

In a little over a minute some of the girls in the swim team carried me out of the pool. All the while our coach was at her desk by the pool. I was laid on my back on the concrete and surrounded by the girls, then coach finally came. I explained what had happened and that I had no sensation anywhere but my face and neck, which was hurting. They decided to make me lie on my stomach, yeah I know huge mistake. My neck started to hurt more so they turned me on my back again.

My mother was called and told I’d hurt my leg. It didn’t seem like such a big deal so she sent for a cab to take me to hospital then she’d meet me there, since it was rush hour (heavy traffic) and she was working on the other side of town. I was rolled onto a blanket and carried to the parking lot and waited for the cab. When it came, I was put in the back seat, lying on my side. I lay there, alone with the driver, for hours in traffic on the way to hospital.

On arrival at the hospital, I was taken to the ER, what happened in there is all a blur. I remember, later on, being in a dark room. My head was shaved in preparation for the bolts and screws to be put on either side of my head. I had on a neck brace that was too large for me, since they didn’t have any in my size, which was extremely uncomfortable. I kept turning my head trying to relieve the pain on the back of my head despite being advised otherwise. Eventually my head was forcefully held down.

The doctors and nurses left after a while and nobody was permitted to come see me. The door was shut and I was alone in the dark. I couldn’t reach my nose when it needed a scratch, get a drink when I was thirsty or press the bell to get some help. I called out as loudly as I could but no one heard. I was scared, confused about what had happened to me, trapped in a dark room and trapped in my body. It was a tough night. Eventually I was taken to the children’s ward, where I stayed for six days with weights pulling my head, then went for surgery. The doctor’s report said, in the most beautiful language, that they did something wrong.

After surgery, I woke to nurses waiting to put tubes down my throat to suction fluids from my chest since I was too weak to cough. They said I’d drown in my own “juices” if the extremely uncomfortable procedure wasn’t done. It became unbearable so I bit the tubes as hard as I could until the nurses got fed up and aborted the mission. The next day I was back in the children’s ward. People visited often, mostly family members and family friends, and I saw how sad and scared for me they were. I was scared too but didn’t show it. There was too much worry for one room as it was. I masked my sadness with humor and fake smiles.

The first time I sat in a wheelchair I felt like I’d been spun in a blender for hours (very dizzy) and had blackouts but never passed out, I would’ve preferred the latter. The amount of time I could sit for increased gradually. I hardly slept at night and wasn’t sure what had happened to me as nobody explained clearly. I kept thinking I’d be good as new in no time. Time passed, not much changed, I became frustrated and bitter.

When I went back home all my time was spent in my room. I sat in a wheelchair for a few minutes every day after what I now know as lousy physiotherapy. I was never one to voice my feelings so kept all inside. I managed to change my mind set to a more positive one by watching motivational films. Sadness came and went and my share of falling asleep crying wasn’t eluded. I felt that the accident was all my fault, that if I stayed at the school where I was it wouldn’t have happened. I felt stupid and that I deserved to have a miserable life. Old friends didn’t make it easier. One of them sent me a text message that read “Are you a cripple now??” That was just days after I got home from the hospital. Another actually told me (at about the same time) I shouldn’t have left the school and that all my talent had gone to waste. I do have two loyal friends who came to see me whenever they could and don’t see me any differently as they did before. They are two truly exceptional young ladies.

Certificate of Academic Achievement

Certificate of Academic Achievement

In September 2008, two years after my injury, I decided to go back to school. I knew it would be difficult but had no idea how difficult. I couldn’t get into the classrooms ’cause there were high steps and no ramps. Finding people to lift me and my heavy wheelchair into the rooms was too time consuming to be of any value, and frankly embarrassing. I ended up staying in a room downstairs and was told teachers would have one-on-ones with me there. I was happy with the arrangement because the stares and cruel comments from other kids had become too much. Teachers seldom came and I taught myself a lot. I excelled in English Literature and Music and was rewarded by the school for it. This happened for my general performance too.

certificate of academic excellence

Certificate of Academic Excellence

I found out I was a good singer, with perfect pitch said my music teacher. I performed at school a number of times and loved it. Sure it took a while for people to warm up to me but it happened and I have the most amazing friends now. My final exams took a toll on me because I can’t write as fast as everyone else and the extra time allowed wasn’t too much. The tables were not accessible so I had to really bend over to reach them. Though I didn’t finish all my papers, I did my best with each one and I’m happy about that.

I’ve got to say that the hardest thing I’ve had to face is watching how life around me went/goes on and that there’s nothing I can do about it. It’s often said that high school years are the most formative and unforgettable. I never really had a memorable high school experience and I can’t change that. Never went on field trips or anything like that. What’s weird is, I don’t feel bad about it.

I now know that I’m a strong person who can handle anything thrown at me, and have fun doing it. Challenges keep coming and I keep overcoming them every day. Some say I inspire them, I don’t know if it’s really true but I like to think it is. Now I have a sense of purpose, I can do something for others, it’s not just others doing things for me anymore.

Rising Star
Tasha Amadi

Tim his Brother and Nephew

Tim Ward – Light At The End Of The Tunnel

Hello, my name is Timothy Ward. On November 13th of 2008 I was in a serious motor vehicle accident which rendered me a C5 complete tetraplegic. After the accident I spent five weeks in the Royal North Shore Hospital in Sydney, Australia then flew home to Christchurch, New Zealand and spent seven months in the Burwood Spinal Injuries Unit. Those eight months will forever remain etched in memory; it’s a different world inside a spinal unit. No matter how bad you think things are, you are constantly reminded you are not the only one going through this and to be grateful just to be able to move your arms. Things could have easily been much worse.   

Tim with his Mum and Dad

Tim with his Mum and Dad

WRONG PLACE, WRONG TIME

Having my spinal cord injury in Australia complicated my situation greatly. As I had been out of New Zealand for longer than 6 months I was no longer eligible for Accident Compensation Corporation (ACC) which would have provided comprehensive no-fault personal injury cover, as it does for all New Zealand residents. Thankfully I was accepted by a New South Wales scheme called Lifetime Care who covered my care and equipment such as chairs, hoist and bed. Normally someone covered by ACC would receive 80% of what they were earning before their accident but I am now only receiving an Invalids Benefit.    

Tim the Barman working on Dunk Island

Tim the Barman on Dunk Island

MY LIFE BEFORE SPINAL CORD INJURY

Prior to my accident and C5 tetraplegia I lived a carefree life. Travel has always been a big part of my family’s lifestyle. I was born in Durban, South Africa then spent my early childhood in Nottingham, England before the family immigrated to Christchurch, New Zealand.I’ve long held a passion for travelling, adventure and playing all kinds of sports, and been fortunate enough to pursue these interests for most of my life. Sport has been an integral part of my life; it’s something my family and I have always enjoyed immensely, developing fitness and friendships.  

I grew up playing football (soccer) with my older brothers, our father often participating in our matches as referee. At the age of twenty-six I’d was an accomplished cricketer and played off a 13 handicap in golf. As a good all round sportsman, I would jump at the chance to give any sport a good old crack.  

Tim Ward in RNS Physio

Tim Ward in physiotherapy


I had spent the two years prior to my accident travelling up and down the East coast of Australia having the time of my life. It was on Dunk Island, in tropical North Queensland, working as a cocktail barman that I met Jane. I decided to move to Sydney to be with her. It was a decision that would change my life forever.  

MY LIFE AFTER SPINAL CORD INJURY

Being so sports minded and athletic, coming to terms with tetraplegia after spinal cord injury and everything I lost as a result of paralysis, has been very difficult for me. I’d have to say losing my hand function and sense of touch has been the hardest. I truly believed my life was over. I was very depressed for most of my time in hospital.    

Today, nine months after my accident, I’m starting to see some light at the end of the tunnel. And rather than thinking about all of the things I lost and may never do again, I’m focusing on what I do have, and can do. Taking on the challenge and giving it my best, as sportsmen do.    

Tim Ward with Brother and Nephew

Tim with Bro & Nephew

MOVING FORWARD

I’m awaiting the completion of modifications to a Housing New Zealand home before moving in. The necessary works include ramps for access, wider doorways and a modified wet room for showering. I’m also trialing equipment in preparation, wheelchairs, hoists and pressure relieving mattresses etc. which should make life easier and assist me in achieving greater independence.    

Should you like to read more about me and the impact my accident and resultant spinal cord injury has had on my life and my family, I invite you to view my website tetratim.org where you can download my biography as an e-book free of charge.    

Kind Regards,
Tim Ward
Tetra Tim.org 

Push to Pier New Zealand
Push to Pier New Zealand

UPDATE

Push 2 Pier — Held on Sunday 28th March 2010. Tim Ward is in training for the annual Halligan Memorial Push 2 Pier fundraiser in support of the New Zealand Spinal Trust. Join Tim in a 6km push, walk, or run from the Burwood Spinal Unit to the New Brighton Pier. Register as an individual or corporate team to contribute to this great cause. Register online at www.nzspinaltrust.org.nz

Wheelchair Heros Are Made Not Born

Quadriplegia – A View From The Chair

Caused by disruption or injury to the spinal cord between C1 and C7 quadriplegia, also known as tetraplegia in Europe, is a traumatic life changing event. I’m Graham, founder of the Mad Spaz Club. At 26 I knew little about quadriplegia. That was all about to change. Laying in a hospital bed I remember thinking of all things I would never be able to do again. Now after living in a wheelchair for 16 years, I’ve found with determination and help from friends, there is little you can’t do. Quadriplegia is a life changing condition but it’s no barrier to living a full happy positive life.

Before Living with Quadriplegia

My Kawasaki and Suzuki Katana 650 Motorcycles

My Kawasaki and Suzuki Katana 650 Motorcycles

Like most young Australian blokes I was into motorcycles, surfing, fishing, 4×4 camping, and travel. I owned and ran a successful electrical contracting business turning over $128K/year. I had ridden a Katana 650 around Australia with my brother and two mates and spent five months on a Kawasaki 650 twin riding across USA on my own. I was athletic handsome and worldly wise.

Growing up on my loving parents beautiful farm with three sisters and partner in crime brother, I’d rolled cars, jumped cars, brother even ran me over with a car. I had been shot, blown-up, electrocuted and damn near drowned, typical Aussie bloke stuff. I was soon to find my biggest challenge when early one crisp sunday morning riding my beloved Suzuki Katana 650 motorcycle home. My life changed forever in a split second.

My Spinal Cord Injury Accident Scene

It was five o’clock Sunday morning on a northbound corner of the Gateway Arterial Highway near Nudgee, Brisbane Australia. I slipped off the highway at 100 kph (60 mph). Spearing head first toward the southbound lane embankment it flashed through my mind, “You’ve done it this time Graham.” The impact was sudden and brutal. Unconscious my limp body slid to a stop. There I lay, lapsing in and out of consciousness.

My cheekbone was smashed into 6 pieces, broke nose, mandible (jaw), orbital (holds eye in), clavicle (collar) bones, three fractured ribs, and four shattered teeth. That was with a quality $300 Shoei full face helmet on. I would recover from all these but not the badly broken cervical vertebrae C5-C6 in my neck. The vertebrae ruptured my spinal cord which leaked spinal fluid, stripping myelin sheath off nerve endings, causing quadriplegia (tetraplegia).

X-rays later revealed the full extent of impact on the C5-C6 cervical vertebrae. It was so severe it more than crushed my spinal cord. Shards of badly broken bone sliced my spinal cord open in several places. Some shards were embedded in my spinal cord and some were still floating around in my neck. C4 was also not in it’s correct position. Swelling along with these meant that my quadriplegia would be severe. I would live the rest of my life in a wheelchair paralyzed from the chest down. Never again would I feel fresh cut grass under my feet, bubbling surf around my hips, or the warm delicate softness of a woman’s body pressed against mine.

You would think being thrown around like a rag doll at 100 kph I would have left the motorbike behind. But no, the hot exhaust came to rest on my left hand and I was unable to pull it away. Watching the smoke rise from my burning hand my brain was sending, “Pull your hand away” messages. Problem was, they couldn’t get from my brain, past the damaged section of spinal cord, to action my arm and hand muscles.

I was totally paralyzed from the neck down and on the brink of life or death. The hot exhaust burnt all four fingers on my left hand to the bone. I lay on my back motionless staring at the sky for what seemed to be an eternity. Having dated a nurse for ten years, and knowing a paraplegic friend in wheelchair, I knew I would most likely be a quadriplegic for life.

Angels On My Shoulder

Thankfully two men in a vehicle behind me noticed I had suddenly left the road and pulled over to check on me. I told them I had broken my neck and suspected quadriplegia. Between unconscious lapses I asked them to lift the motorcycle off my hand, and to not remove my helmet, touch me or move me. To take my mobile (cell) phone from my belt, phone emergency services, then phone my parents. Not wanting my mother to find out I requested they ask for my father, but due to urgency Mum was told first. Mum later told me her heart sank, knees went weak, and an overwhelming feeling of sickness washed over her. I’m sure my father suffered the same.

A strong quiet man, my father phoned my brother, hitched the 6×4 box trailer onto his car and headed for me. A policeman I would later come to know as “Dave the motorcycle copper” arrived at the scene. I recall answering his authoritative voice with, “I’ve done it this time Dad.” Apparently he fell to his knees, he had children of his own. Around this time my best friend being close by had heard of my accident and shortly arrived on scene with his wife, a nurse. My best friend was left frantic and alone on the highway until my father and brother arrived at the accident scene. Because quadriplegia is so serious his wife had accompanied me to hospital.

During the ambulance journey to hospital I complained to the young rookie paramedic in the back with me that I felt like my head was resting on a steel bar. He told me to shut up and lay still. The senior paramedic driving knew full well I had quadriplegia so couldn’t move and scolded the rookie. A spinal injury specialist doctor later confirmed the incorrectly fitted stiff collar had lacerated the back of my head. I know every quadriplegic goes through feelings of “what if” but the fact is, if that idiot rookie had fitted my collar correctly I may have more function today. Stabilizing the head and neck correctly is very important. 

I was taken to the Royal Brisbane Hospital (as it was policy to go to closest hospital) where a doctor took a quick look at me in the ambulance, before ordering I be taken to the Princess Alexandra Hospital Spinal Injuries Unit. This delay and further travel was of not of benefit to my spinal cord injury.

First Day in PA Hospital Spinal Injury Unit

Titanium Plate & Screws

Side X-ray of Titanium Plate & Screws holding C4-C7 and hip bone block together

In the Princess Alexandra Hospital Spinal Injuries Unit the surgeon warned, “You may feel a bump here.” I opened my eyes to see him swing a large surgical steel mallet, whack! Two pointy surgical steel bolts were hammered into either side of my skull just above the ears. Curved scissor like tongs fix to these bolts and 7.5 kg (16 pounds) were hung from a rope running over a pully wheel attached to the bed head. With early quadriplegia stretching the neck vertebrae apart relieves pressure on the spinal cord lesion and limits head rotation that can cause further damage. Injections were given to reduce swelling and for pain etc.

It isn’t so much the broken spinal column vertebrae, but the amount of damage to the actual spinal cord itself (inside the spinal column) that matters. The greater the spinal cord damage the greater the resulting paralysis, loss of function and sensation, quadriplegia. By testing what you can (or can’t)  move and feel a diagnosis of level and complete or incomplete quadriplegia can be given.

The wonderful nursing staff and support from my family and friends pulled me through some very dark days. Humor and love are great coping mechanisms. After a month in the acute ward I was diagnosed with C4 incomplete quadriplegia. The leading spinal cord injury specialist in Queensland at the time, Dr. Vernon Hill, suggested an operation to stabilize my neck. This would involve removing the shards of bone and replacing the badly broken cervical vertebrae C5-C6 with a shaped block of bone taken from my hip. All fixed in place with a titanium plate and screws.

Removing the unstable C5-C6, bone fragments, and locking C4, hip bone block, and C7, together would stabilize my neck. Making me more robust should I suffer another abrupt impact, fall or blow. Considering my wheelchair thrill-seeking lifestyle I opted for the operation. Taking ten hours it was a complete success and of huge benefit to me. During a recent annual check-up at the P.A. Hospital Spinal Injuries Unit I had the privilege of catching-up with Dr. Vernon Hill and thank him for saving my life.

3 Months in PA Hospital Spinal Injury Unit

Titanium Plate & Screws

Front X-ray of Titanium Plate & Screws holding C4-C7 and hip bone block together

My girlfriend left me, it was hard on her and my lack of will to live with quadriplegia didn’t make it any easier. I believe you need to love yourself before you can let anyone else love you. I didn’t love me as a quadriplegic. She had a gorgeous 18 mth old daughter. I sobbed, “I’ll never be able to run down the beach, pick her up when she falls or walk her down the aisle. Go find someone who can.” She did but we keep in touch.

I was moved from the 4 bed Acute ward into the nearly full 48 bed Spinal Unit. I started learning how this new life with quadriplegia might work. Overcoming the “just let me die” stage and so sick of counting dots on the ceiling, it took a few weeks until I could sit up in bed without passing out or throwing up. A wide elastic waist band helped. I began sitting in a wheelchair for 2 or 3 hours before pain and exhaustion sent me back to bed.

With no arm movement and little sensation rehab was slow. Aided by Physio and Occupational Therapists stretching muscles, weight machines, hydrotherapy, splints, sticky tape, paddle pop sticks and fish tank tubing all held new purpose with quadriplegia. I set small goals like signing my name, sitting up for 4 hrs 6 hrs, taking more food and less pills. My nights were filled with horrific dreams. Given over 900 injections in those first three months my stomach was a patchwork of bruises.

6 Months in PA Hospital Spinal Injury Unit

Clavicle & Dislocated Shoulder

Broken Clavicle & Dislocated Shoulder

I regained some limited, weak arm movements, enough to push myself one length of the Rehabilitation room. Quadriplegia is weird as no two quadriplegics turn out the same. Some with “incomplete quadriplegia” may regain a little movement and/or sensation whereas others with “complete quadriplegia” none. In rare and often inexplicable cases they actually walk out of hospital. I can say, don’t push or expect them to perform anything, all you need do is let them know you love them.

Just as blind people develop an amazing sense of hearing, and can feel the difference between a $10 and $20 dollar note, losing the use of my legs and hands sharpened my other senses. I could see hear smell and taste all the little things others wouldn’t notice. Quadriplegia had turned the volume up on my life. Feeling the sun on my face would fill me with warmth, the nervous tone in a friends laugh would make me grin all day (or maybe that was the medication lol).

My father would smuggle in a six pack of beer on wednesdays. We sat in the sun at the end of the spinal unit drinking them. Mum brought fruit and flowers, great to bribe the nurses and trade with other wheelies. But the best thing they always brought me was their love.

I had a Supra Pubic Catheter (SPC) installed. It’s a permanent silicone tube inserted through the lower abdominal wall to drain the bladder. I chose the SPC for ease of cleaning and sexual reasons. My friends were all getting married and after 16 weekend weddings in a row it became painfully obvious with my level of quadriplegia I would never regain enough strength to push a manual wheelchair around in the real world. Marriage… first I had to find someone even willing to love a quadriplegic.

9 Months in PA Hospital Spinal Injury Unit

Brain lesions and fractured mandible

Brain lesions and fractured mandible

As C4 incomplete quadriplegia left me with no finger movement or wrist extension I test drove a couple of power wheelchairs. Of course chose the fastest one. It turned out to be my best wheelchair ever. After rewinding the Quickie P200 electric motors it does near 30 kph. Being compact and turning on a dime I can easily navigate “normal” households. Also important to me, it can be broken down for transport in a standard car. My modified P200 with Jay 2 gel cushion etc. was $9500.

We had a ramp put on the back door of my loving parents home, modified my room, shower, toilet and installed an air-conditioner (with quadriplegia we can’t regulate our body temperature). We don’t sweat much so the extremes of heat and cold knock us around. The CRS (Commonwealth Rehabilitation Service) was excellent and even paid for the home renovations back then.

12 Months Post Injury Returning Home

Home again I spent most days sitting in the sun contemplating what I was going to do with my life of quadriplegia. I followed up job leads in accounting I’d started in hospital. Bought a van with a hoist in the back. Began teaching myself how to use a computer. And built working balsa-wood model planes with my four year old Nephew as therapy to tune fine motor skills.

My incredibly supportive family encouraged me to venture out. They didn’t see my quadriplegia as a disability. They didn’t see the wheelchair, they saw me as a man, their son, their brother. Early one morning I had an accident in bed. We call it a, “Kinder Surprise” (a diet chocolate egg with toy inside). It’s brown, tastes like crap and you never know what you’ll get until you roll me over. Being a real mess my mother seated me in my power wheelchair and I ventured out into the garden.

In the early morning sunlight watching my father gardening a bee landed on a flower right in front of me. It was another turning point in my life. The bee didn’t care if I was dead or alive, or that he would only live a few months. His purpose in life was to collect pollen and he was busy doing it. Should he not, he would no longer be useful to the colony, and the colony would no longer be whole for the loss, of that one bee.

No man is an island, entire of itself; every man is a piece of the continent, a part of the main. If a clod be washed away by the sea, Europe is the less, as well as if a promontory were, as well as if a manor of thy friend’s or of thine own were: any man’s death diminishes me, because I am involved in mankind, and therefore never send to know for whom the bells tolls; it tolls for thee. — John Donne

How could this tiny creature overpower me. Touch me so deep it would effect the rest of my life. It was just another “little thing” yet so incredibly beautiful. I was alive and there to see it. I realized then, I had purpose in life, a destiny. And only I could fulfill or waste it. On this planet I too am just a tiny creature, with the same massive potential. I felt a tear slip away and grinned at my father who was now watching me.

Life in a Wheelchair Living with Quadriplegia

Having lived with quadriplegia for 16 years now I can say, it took two years to come to terms with my new life and think, yeah I’m doing ok, have self esteem, confidence, contentment. Then at the five year mark I caught myself in the mirror and smiled nodding, “Now you’re really doing ok, and have accepted life as a quadriplegic.”

Wheelchair Heros Are Made Not Born

Wheelchair Heros Are Made Not Born

Shortly after that day I rounded the corner into our living room to find my mother with her head in her hands crying softly. When I asked what was wrong she replied, “nothing, I’m just tired.” She quickly wiped her eyes and went on with her day. It was me, the enormous strain of quadriplegia and being my primary carer had taken it’s toll. It hit me like a sledgehammer, that one person who would love me as a quadriplegic had been beside me the whole time, my incredible mother.

I applied and lobbied the government for a place of my own and permanently funded carers. My father was instrumental in cutting through bureaucracy and red tape for me building a case file three inches thick. Community groups friends and contacts made over the years all pulled strings for me. In 2002 eight years after my accident I moved into my own three bedroom quadriplegia and wheelchair friendly home.

Graham Streets founder of the Mad Spaz Club

Graham of the Mad Spz Club

I currently work part time in Accounting and Internet Technology. I enjoy creating graphics like the wheelchair heros one above. I have four excellent carers who assist in my day-to-day needs from showering to gardening, 41.5 care hours/week.

I am an advocate for the disability sector playing a keynote role in securing $4.3 Million in non-recurrent funding for the state over four years commencing 2005.

Early in 2009 I became an Ambassador to White Ribbon Day to end violence against women. A common reality kept all to silent amongst the disabled and their circle of charges.

There are many stereotypes and physical barriers ahead for those with a spinal cord injury like quadriplegia. Worsened by a lack of disability funding, public awareness and support. Hence The Mad Spaz Club. A little corner on the internet where we can get together with like-minded people to share our experiences combine our voices and problem solve.

Education and funding in the disability sector is increasingly enhancing the lives of disabled people. Find out what it is you want and don’t stop until you achieve it. You have a voice so make it count. Get out there smile bright and enjoy your life. Keep your eye out for us wheelchair users and all the “little things” along the way.

Kind Regards
Graham Streets
MSC Founder