How Do I Walk?

I walk on some very snazzy wheels. I ride a Suzuki. No hands! Cooo…ooo…oool! 

*smile*

It’s not what you’re thinking. *sigh*

It’s not a sleek, powerful machine gripped tightly between my thighs while being driven at a thrilling breakneck speed. I’ve done that already. Breaking my neck, I mean. And the only thing that is gripped tightly between my thighs these days is a boring old pillow. *laugh*

I wish… *sigh*

I don’t dress in sexy, skintight black leathers either. Hell, I don’t even wear the more-expensive-than-all-your-shoes-put-together stiletto boots. Is it even possible to wear stiletto boots on a motorbike? Well it just sounds so sexy, so just indulge me. *laugh*

I don’t wear a you-can-see-yourself -in-it shiny, black helmet concealing my eyes, mysteriously behind its darkly-tinted visor, simply because my Suzuki doesn’t move fast enough – not even blow-your-hair-back fast. The only thing that I can hide behind these days is my smile – my greatest defense against the world. *smile*

I walk using a battery-powered, chin-controlled Suzuki – commonly known as an electric wheelchair. It really is cool. Well, at least all the little boys at Chad’s school think so! *laugh*

Most people automatically view a wheelchair as a severe confinement. But for me, my wheelchair is my tool for mobility and freedom. It is my source of independence. It can never take the place of my legs because fortunately I still have those. But it does take over the function of my legs, allowing me to walk – albeit differently to the way you do. It did take a long time for me to learn to appreciate that – and even longer to accept.

I remember that soon after I was moved out of ICU, into the spinal unit, for rehabilitation, one of the nurses said to me, “So, are we going to get you up and into a wheelchair tomorrow?”

I nodded enthusiastically in agreement.  I didn’t want to spend another second lying flat on my back. What a waste of time. Besides, in my mind this was all temporary. The sooner I let them get me up, the sooner I could prove to them that I was perfectly okay.

She continued “We will have to get you wheelchair fit.”

I remember thinking that this nurse was out-of-her-mind-crazy. I noticed that she was a little overweight and thought smugly, that she probably doesn’t have a clue what it feels like to be fit. Besides, I was already extremely fit from all my sporting activities. I had already run my first half marathon again and Chad was only 10 months old. I had also been working out furiously, at the gym, to get rid of all the weight I had gained while pregnant. The hockey season had also recently started, so I was already reasonably fit, firm and healthy. Silently, I forgave the nurse’s ignorance. After all, I had only been out of action a little more than a week. 

Little did I know what an alarming time, lay ahead of me. 

The following morning, I was fitted with a special, corset-type, upper body support and a hard, plastic neck brace. I was excited and eager to get up. 

Two nurses lifted me, gently and expertly, into an oversized hospital wheelchair.   Almost immediately, I passed out.  When I came around I was still in the wheelchair, but it had been tilted right back until I was almost horizontal.  The nausea and dizziness were unbearably overpowering. Once I was feeling a little better, they slowly lowered the wheelchair into an upright position.  Moments later I fainted again.  This went on repeatedly. It was frightening. I had never experienced anything like it in my life.  Although the fainting spells only lasted a couple of minutes each time, they felt like an eternity.  

After trying for more than an hour, it was decided that they put me back to bed and try again the following day. I was devastated. I felt as if I had failed. I was confused and didn’t really understand why this was happening. I wanted to beg them to try one more time. But I was aware that there were many other patients waiting in bed to be lifted into their wheelchairs for the day. The disappointment was overwhelming. I couldn’t even cope with the simple everyday act of sitting. I lay in bed and sobbed for a long time after that.

We tried again the following morning. I fainted frequently. But, I was determined to sit up, for fear of spending the rest of my life lying flat on my back. Besides the nausea and dizziness, I had absolutely no balance which really surprised me. I was unable to sit up on my own. I suppose I had not given it any thought before. I just expected to be able to sit up straight in a wheelchair. They kept on telling me that I was paralyzed from the neck down. But I was fighting it with every fiber of my being. I realized then, that I had no real understanding of what it meant to be paralyzed from the neck down.

Eventually a nylon strap, resembling a seat belt, was fastened around my upper torso, securing me to the backrest of the wheelchair to prevent me from falling out.  Pillows were shoved under my elbows and arms to support me. I felt ill, fighting the queasiness and willing myself to stay conscious.  It was hell. I fought for as long as possible. I barely made ten minutes sitting up straight in my wheelchair. This time I was flooded with relief when they finally put me back in bed.

With time I grew stronger. Thankfully, I am now wheelchair fit. I can sit in my wheelchair all day if I have to. Although I have to confess, I do become tired easily. When I am at home relaxing, I spend most of my time sitting in my Lazyboy recliner.

It’s difficult to describe what it feels like to be paralysed. Sometimes I feel as if I have been suspended by my chin, on a pole in midair, and left to hang. The body is incredibly heavy – an absolute deadweight.  My neck and shoulder muscles work overtime, keeping my balance and holding my head up, resulting in endless pain and spasm.

Nothing could have prepared me for the shock of actually seeing myself in a wheelchair for the first time.

Donned in my corset and neck brace, I was lifted into my wheelchair, strapped in and wheeled down the long corridor, by a nurse, to the “gym” where each patient was seen by the physiotherapist and occupational therapist each day.  As I passed the nurses’ station, I can vividly remember seeing myself in the king-sized mirror at the end of the passage.  As we drew closer, all I could see was this pathetic image of a person – me – in a wheelchair. Oh God. No! Surely, that is not me?

I was barely recognizable. But somehow, I just knew that was me.  Reality struck! 

My hair, although clean, looked scruffy.  Instinctively, I wanted to tuck it behind my ears and make it look a little neater, using my fingers. Why wasn’t my hand doing what my brain was telling it to do? I felt unbelievably self-conscious at that moment. Besides looking a little disheveled, I had no makeup on which was unusual for me.  There seemed to be big bruises around my eyes.  It looked as if I had two black eyes – just like in the movies.  I assumed that they had been caused by the accident, or the metal clamps that had been used on my head, to stabilize my neck, during the airlift to hospital.  I was extremely pale. The bright fluorescent lights in this hospital corridor made everything look worse. The way my body hung to one side made me look retarded. I was horrified, petrified and in total shock.  That image will stay with me for the rest of my life.

The wheelchair was suddenly turned sharp left, away from that horrific vision in the mirror.  There I was, amongst my fellow patients, mostly male. In fact, I was one of three ladies in the entire unit. These men in their wheelchairs all looked just as pathetic. I stared at them but I couldn’t make eye contact. Somehow, I just simply wanted to pretend that they didn’t exist. I don’t think I had ever been faced by a person in a wheelchair before – not that I remember.  I couldn’t help thinking that I wasn’t like them.  I couldn’t accept that I was so debilitated.   I was undeniably the most helpless of them all, and yet at that time, I could not associate myself with them. I was in complete and utter denial.

One of the occupational therapists brought a catalogue to me the following day. She patiently paged through it, holding it so that I could see. She was making suggestions about types and models of electronic wheelchairs she thought would be suitable for me. Silently, I wished that she would just leave me alone. After all, I didn’t need one of those. I had been praying for a miracle. I had no doubt in my mind that I was going to walk out of that hospital.

Obstinately, I refused to cooperate. I think she eventually went ahead, at my husband’s insistence, and ordered a suitable wheelchair for me. I thank God now, for her persistence and expertise because I have seen the terrible consequences of being in the wrong wheelchair in many other patients with spinal cord injuries.

Six-and-a-half weeks later I went home in a normal wheelchair where I had to rely on somebody constantly, to push me around – to get me to where I wanted to be. Despite being Japanese, my very expensive Suzuki arrived all the way from the United States of America, more than a month later.

The hospital arranged for the chair to be converted from a hand control to a chin control. At the time, very few electronic wheelchairs came out with a standard chin control – mainly due to lack of demand. I guess, in a sense, I lived up to my nature – I have always believed that one doesn’t bother to do something unless one intends to do it properly. Well, I did a damn good job of breaking my neck! *laugh*

As I discovered more about this male-dominated, quadriplegic world and learned more about living in this unusual and uncooperative body, I had my own changes made to the original chair. With the help of my dad, we redesigned the chin control and had it re-done more professionally because it was not done very well in the first place. Aesthetics are important to me. The last thing I want is for people to look at me and think “Ag shame!” Call it vanity or call it pride. It is just who I am.

I also had proper armrests put on, to support my body, to prevent me from falling over. I simply refused to continue wearing that constraining seatbelt. It’s easier for the guys – I think. Most of them are not too concerned with fashion and, as far as I can see, they most certainly don’t sport a pair of breasts. The chest strap just didn’t do it for me! It ruined the look of my outfits and it had a real tendency to squash my boobs. After all, this injury had robbed me of enough of my femininity already. I wasn’t about to let it or some ugly, black strap turn me into a flat-chested freak.

It took me several months to learn to drive my wheelchair successfully. It didn’t come naturally. That is not because I am a blonde, female driver! *laugh*

I challenge anyone to test their driving skills against mine. No hands allowed!

I can maneuver my wheelchair by exerting pressure on the joystick, using my chin, in and out of most doorways and pokey spaces. Reversing and parallel parking is a breeze for me. I don’t even need a rearview mirror. The only thing you need to watch are your toes – I take no responsibility for those! *laugh*

Most modes of transport, like a car for instance, are referred to as “she”. I cannot bring myself to refer to my wheelchair as “she”. I think I’m afraid that if I do “she” will become a part of my identity. I’m not ready to accept that. I don’t know if I ever will. Although I need a wheelchair to get around it is most certainly not what defines me as a woman.

Although my miracle didn’t happen the way I expected it to, when I was still in hospital, it doesn’t mean I have stopped believing in God, or miracles. I know that unless there is a medical breakthrough of dramatic proportions I will walk differently for the rest of my life on this earth. But, I have learned to recognize the many miracles of everyday life. And for that I am grateful.

I have also come to appreciate my wheelchair and what it means to me. I cannot just sit in any old chair. The best way I can explain it, is that my wheelchair is like your favourite, most comfy pair of shoes you have ever owned – the ones you cannot bare to throw away – the ones you wear until they literally disintegrate, leaving you shattered and heartbroken. To put me in another wheelchair will be worse than wearing the tightest and most achingly-uncomfortable, blister-giving pair of shoes you can imagine. Teeth-clenching pain!

Suzuki wheelchairs are no longer manufactured. It’s almost impossible to get spare parts for it. I don’t want to imagine the day it decides to give up on me and I have to find an alternative way to walk. I have already had some heart-stopping experiences where my trusted wheels have been ill and been in dire need of repair. I am grateful for every step my Suzuki wheelchair has given me. It is twelve years old now. Machines break!

Denial is a strange thing!

Thank you for walking this part of my journey with me.

Please leave your footprints in the comment box below.

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About Tracy Todd

Although I need a wheelchair to get around, it is most certainly NOT what defines my essence as a woman. I am also a mother, teacher, wannabe writer and an inspirational speaker with a positive outlook on life.
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36 Responses to How Do I Walk?

  1. Michael Wessels says:

    Hi Michael here. I had my suzuki for 13 yaers and its still going strong. You wouldn’t believe the roads I ride every day. If your suzuki does need spares one day, let me know.I got a spare suzuki. Would help you any day.

  2. Ian says:

    If you look at my pics on face book you will see that I also ride a Suzuki. bit faster than yours and mine pulls wheelies. Not that I do it regularly, it is more unintentional. We may have to have a competition sometime.

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  5. Bill Watson says:

    I have wheeled many a patient for various reasons in hospitals and other facilities but what I remember the most was the day I decided to try one out for myself. It was not an electronic one. I am so glad no one saw me try it out. What an embarrassing moment that would have been. Fortunately I didn’t break anything but I came very close to doing so. After that experience I was a much better driver.

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  9. mebemilly says:

    You are such a heroine!
    I would say more, but I showed my opinion of you in a comment on the ‘What happened to you?’ post.
    Hope you Suzuki lasts forever! Suzuki is a great name to have, even if it IS just for the company, it’s still pretty snazzy.

    Blessed be always.

  10. JackieO says:

    Im so loving your blog Trace.
    Even though from spending time together I have a better idea than most of what your challenges are, Im still amazed at just how much you deal with ona daily basis.

    You were inspiring to me BEFORE your accident, you’re starting to reach hero level now!
    :)

    xox

    • Tracy Todd says:

      Thanks so much Jax. Thanks for reading my blog and for being a part of my journey.

      So glad at least one of my students found me inspiring as a teacher. ;-)

  11. Beautiful, Tracy. This is by far the most enjoyable wheelchair ride I’ve ever been on. I chuckled at some parts. Your ability to elucidate with humor is superb. Thank you.

  12. Eva says:

    Tracy, this is beautiful. Oh, I have so much to learn from you.

  13. Cat says:

    You are one amazingly tough woman. Wow. I’m just… stunned. Partially because of that kick-ass wheelchair, too. ;)

  14. Sarah says:

    I’m new here, Tracy, but I have to tell you that in just one post I find so much “real” it’s almost overwhelming. And that’s a good thing, my dear. Though none of us can imagine what your reality is — as I’m sure you couldn’t have imagined it when you were still running half-marathons — you do a phenomenal job of taking us there in both big and small ways. Pieces of your heart fall out onto the page, and even if you cannot move your hands, you have touched many, I am sure.

  15. I love how you reframe “walking” for us, Tracy, taking us far beyond the standard definition. Absolutely wonderful. I’ve had quite a few students who were in chairs, and their mastery has been a glorious sight to behold. And btw, you look very spunky indeed in the photos. Love those toenails!

  16. J.D. Meier says:

    You have a way of painting a picture that goes beyond images.

    > It is my source of independence.
    Beautiful insight.

    > y wheelchair is like your favourite, most comfy pair of shoes you have ever owned – the ones you cannot bare to throw away
    Perfect frame.

  17. As always, I marvel at the steps of your journey. In this post, I found your writing absolutely riveting and particularly vivid, especially as you describe what it feels like to be paralyzed.

    It seems to me, Tracy, that you do far more than walk: you soar!

  18. Dawn Robb says:

    Tracy,

    I truly admire you for your courage and sense of humor. I’m friends with Dorothy Anne Howitson and she is also a courageous woman.

    We never know how we would react until we are in that situation. You seem to have a supportive husband, which is wonderful.

    May God continue to use you. You have a true ministry!

  19. Tracy, I don’t know how to predict the reasonable life-expectancy of your Suzuki, I don’t know what kind of maintenance is available in your region, besides the scarcity of parts you mentioned.

    It’s clear from this post that you’ve endured a long and difficult period of adjustment and adaptation, and I have no wish to offer you invalid hopes.

    I do, however, want to make you aware (if you aren’t already) that there’s been significant research and work done on alternative control systems configurable for different types of electric wheelchairs.

    I would urge you (or someone in your support team) to contact a researcher named Torsten Felzer at the Darmstadt University of Technology
    Institute of Mechatronics in Mechanical Engineering (Germany). I believe he has a doctorate in Computer Science.

    He’s been working on combining computer and wheelchair navigational control systems into single interfaces requiring limited voluntary muscle control (such as only tongue, eyes, head turns or neck flexion/extension). He’s been writing and lecturing on these subjects throughout the same period you have been in the chair. I’ve been plowing through his articles as best I can but they are technical at a level above my education. They are also in German, my German is pretty elementary, and I do not know if he speaks English.

    My personal experience is that in Germany there is always someone available who is fluently bilingual English/German, especially in University settings.

    In hopes this may prove useful, here is his contact information:

    Torsten Felzer
    Jacobistraße 17
    64293 Darmstadt, Germany
    Telefon: (0 61 51) 89 46 05
    Fax: (0 32 12) 108 21 30
    E-Mail: felzer@mail.com
    URL: http://felzer.medianet-world.de

    This was listed on his web site as work contact info:

    Torsten Feltzer
    Darmstadt University of Technology
    Institute of Mechatronics in Mechanical Engineering
    Petersenstr. 30
    D-64287 Darmstadt
    Germany
    eMail: felzer@mim.tu-darmstadt.de
    Phone: +49 / (0) 6151 / 16 – 22 74
    Fax: +49 / (0) 6151 / 16 – 53 32

    If you or any pals read German, you can see his index of articles and CV of international appearances on these topics at his web site, the one listed as URL.

    This is only one guy. There are others, and other types of wheelchair motion-control systems: sip & puff, eye-gaze, TTK(tongue-touch keypad), speech-controlled navigators, even some kind of neural-net interface that evolved out of translating EEG readings into motion-control. I believe it’s worth researching, but I can’t entirely tell what your comfort level is with re-visiting the problem from what may seem like “square one” in order to evaluate the current state of feasible, available solutions affordable to you.

    • Tracy Todd says:

      Thanks for all the trouble you took to send me all this information, Mikey. I am aware of the various technologies available but I’m still hoping that my Suzuki will last forever but I guess its day will come. It’s just so comfortable and I feel really confident using it so I really dread change. I know that in time I will have to face that challenge.

      • I get ya. I had a 1991 Honda Civic I just could not bear to part with until it finally got to 274 thousand miles in 2008. It would have cost thousands to keep it running, so I finally gave up and bought a newer one.

        I hope your Suzuki lasts as long and is as reliable for you.

  20. marc arndt says:

    My ex wife also has a Suzuki, exactly the same model as yours except with hand controls and a car seat for extra comfort. Once a month I would take it apart to clean it, regrease the motor, top up the batteries and check everything. Every year was new batteries and tyres imported from the usa. Engine has also been rewound and the control box I had to fix once. Last year I took t in to have the seats redone, it looked brand new.

    I had special aluminum ramps make for my bakkie (pickup) so I can could transport it anywhere. Oh, and I added a four point racing harness for when she went over rough terrain, didn’t want her falling out again.

    I remember one time she went to the pharmacy, the nut came off on the front wheel and the wheel popped off. She had to use the backup wheelchair while I drove around trying to find 1 nut.

    • Tracy Todd says:

      Marc,, you seem to have a very real understanding of the challenges that go along with walking differently.

      Thank you for leaving your footprints in my comment box.

  21. Deborah says:

    Hi Tracy

    I know I’ve said this before, but you are such a good writer and this is another totally absorbing post. I very rarely read blog posts that are more than a couple of paragraphs long, but as soon as I start reading yours I’m completely hooked.

    Interestingly, given the subject of this post, you achieve what so few writers can – you enable the reader to ‘walk’ in your shoes and so gain a deeper understanding and insight into another person’s life than would otherwise be possible.

    Did you write before your accident? And I’ve read via other comments that you are planning a book. Is that right?

    All good wishes

    Deborahx

    • Tracy Todd says:

      Thank you for the lovely compliments, Deborah. I didn’t do any writing before my accident. In fact, I only recently started writing publicly. I did a little writing after my accident mainly for my own healing. I just found that writing about what happened and how I experienced it helped me to process everything in my mind. There just seemed to be so much to deal with all at once. And yes, I am hoping to write a book about my experiences of living life as a quadriplegic.

  22. Anton says:

    Thanks for giving us an insight in your world. We already know you’re very tough and determined, but the realities escape most of us. Maybe it is good that the wheelchair is getting a bit old, if you had a newer model you might have tried to pop wheelies!

    Go Girl!

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