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Home / Stories / Personal Histories / Sophie - Part II

Sophie - Part II

Written by Sophie on Monday, February 27, 2006

Hi…Sophie here…I thought it might be a good idea to give you an update on how I’m going. As you have figured out from Sean’s posts, a lot has happened to me.

I managed to find a second hand wheelchair and didn’t have to order one from overseas…which was good. I spent the first few weeks after being told by the salesman that I could have it deperately trying to find a way to pay for it. I got a personal loan…ended up spending it on clothes etc to please the folks…considering that they and my aunty had to give references for it. The second thing I did was apply online for a credit card from my bank. I don’t know if my parents have seen it sitting in my wallet…but I definitely didn’t tell them that I have one. I went beserk for another week after having the money to pay for the chair cause the salesman went on holiday, away from email for a week and didn’t tell me. Then when he came back I found out that I had to wait til he came to the north island before I could get the chair and that wasn’t going to be for another 3 weeks or so…so I spent quite a considerable amount of time getting on Sean’s nerves saying "I WANT MY CHAIR". I thought I had arranged a place to store my chair (at a friend’s flat) but then she managed to get a job on a farm and had to move away. The guy she flatted with who owned the place said I could still keep the chair there, but I didn’t exactly trust him.

The day I could get my chair finally arrived. I sneaked the crutches out to my car that I’d borrowed from Sean. Only my big brother was home, and he was too engrossed in his computer to notice me walking back and forth through the hallway with the crutches. I jumped in the car and set on the one hour trip to the town where I was set to meet him. I had a job interview there for a couple of hours beforehand (part of my plot to get out of the family home) and got that over and done with first. I drove to the motel where he was staying. Parked my car where I had plenty of space to get out. Grabbed one of the crutches and slowely got out of the car with my purse and shut the door. The salesman was there to meet me. He led me into his motel room and offered me the seat next to the door (considering I was finding it so hard to walk without a wheelchair lately ;) ). With that he showed me the chair, and the new cushion he was selling to me at a discounted price. I tore the wrapping off the cushion and placed it in the chair. He positioned it next to me and put the brakes on to show me where they were. I then transferred and instantly knew that this was my chair. I had a bit of a feel…turned a couple of times, and he asked me how it was. I asked him if the backrest could be lowered, saying something about wanting to be able to move my arms more freely. So, I transferred (without the brakes) back onto the seat and he adjusted the backrest (involved cutting part of the pipes down. I then asked him about camber and he increased it for me, making sure I could still get the chair through the motel door. I then transferred back into it. He commented on my not using the brakes to transfer. I told him the chair I had been borrowing from a friend didn’t have brakes and I kind of got used to it. I then gave him the money and rolled out the door.

I rolled to my car, lifted the boot door up (I owned a hatch back) and put the crutch in the back. I then realised I couldn’t reach the door to put it back down again, I looked at him. He laughed and said "Just this once, u gotta do it on ur own next time". I then rolled to the front door and locked the brakes (for his benefit). I transferred in the same way as Sean (ha ha u have to actually go read what he writes to find out :P ) and he commented on how differently people do things. He then suggested that I get clear stickers to put round my door to protect the paint. With that I was off. I won’t give much more details on that day…you can go read about that on my website…I had no idea what I was going to do with my chair…I kinda just turned up at home with it. I was very lucky I had told mum when Sean and I first met that a "para friend" had challenged me to spend a day in a chair. Lol…I told her that Sean had given me the chair cuz it didn’t fit him. The first thing mum asked was whether she could use it for my great aunt…this was before she saw how low the backrest was, and shows what her idea of wheelchair users is.

I spent a long time despairing over not being able to take my wheelchair outside. For a few weeks I could wheel round the house whenever I liked til Sean and I went on our day out. After that I couldn’t even wheel round the house. I got the job that I’d gone to the interview for. I am so thankful of that because it has gotten me out of the home. I am now living on my own. I did know people in this town before I moved here but I have always been rather secretive, I have this problem opening up to people. None of them had heard from me for six months so as soon as I moved here I became a part time wheeler. I have ordered wheelchair gloves…added a few things to my chair…fine tuned my wheelchair skills. You would think that I would be happy with this.

I knew that my parents would find out eventually that I was using a wheelchair here. I do have some "old family friends" here who would be asking them about it. After a lot of humming and haaing I decided that I owed them an explanation rather than have them hear it second hand. With that I spent the next two weeks or so writing them a letter. I don’t think I could have gotten the finished product out any better. Here is the letter in case you are interested:

{mospagebreak title=Letter to parents}

Dear Mum and Dad,

I’ve put off writing this letter a thousand times, thinking I should forget about it. At the same time I’ve written many versions of this letter hoping to find the right way to put it. Please, I really pray you will reserve judgement til the end of the letter. I felt it better that I write it down so I don’t stuff up what I want to say and to give you a chance to think about it before you felt you had to give me an answer.

As you are probably aware, I am using the wheelchair, that Sean gave me, as often as I can in my flat. What you don’t know is that I have wanted this wheelchair well before Sean gave me one. And now that I have it, the urges inside of me are getting stronger. An older lady friend, that I talk to on the net, describes my wheelchair as a "crutch" that I psychologically need for my emotional wellbeing. She thinks it is important that I get the chance to be a full-time wheelchair user as it will show me that it isn’t what I really want.

I think differently to this. I feel that my "need" for a wheelchair is something more than a phase. I’ve tried to ignore it, thinking it was wrong. I have tried to fill the space with other things, but none of these things are the right shape, or the right size, to fill this need. I always come straight back to it. I know that God can fill all of me, but I feel this is an important part of me that I need to pay attention to.

I am confident and happy in my chair. I want to need a wheelchair. I hope that it makes sense. Obviously going out and hurting myself is stupid, I would never do that. But when I sit in that chair I get an overwhelming feeling of wholeness. I feel like I belong there, and it is the sort of person I aspire to be.

I first started becoming aware of these feelings six months ago. I joined a forum on a website where I could learn that I am not alone in these desires. I have spent time researching reasons why people need wheelchairs. Both the positive, and negative aspects. In my opinion all these things are barriers I want to overcome.

I have also spent a considerable amount of time talking to Sean. That is partly why we went to the capital. We spent part of the day showing me new experiances (like getting stuck in the ladies loo. Any real wheelchair user would have had to call for help). Despite how hard it was pulling XX kg up and down the hills of Wellington, I developed a real sense of satisfaction over the things I achieved. It gave me a glimpse of the life I want to attain and I am have increasingly began to anticipate the things I will face in the future.

Just so you know, Sean is a member in disability group. He spent a large amount of time showing me disability accessability requirements not only for wheelchair users, but for people with other disabilities as well.

What does all this have to do with this letter? I guess what I’m trying to say is that I want the chance to wheel full time, whether it be to prove my, or my friend’s, theory right. I felt it important to tell you because you would undoubtedly hear about it from other people. I think it would be unfair on you if you found out that way. I know you would be unhappy, and disappointed with this decision I have made, but it is something I need to prove for myself. I will always be your loving daughter and I ask that you keep this completely private. It has taken me a lot of guts to share this with you. I understand that you would want to ask someone for advice on this, but please don’t. I want to find the answers on my own.

I guess what I want to come out of this letter is for you to allow me to explore this part of myself. I will do it anyway, but I would prefer to do it with your acceptance/knowledge. I am more than willing to answer any questions you may have, but please write them down. I find it easier to order my thoughts when I’m writing. That way I spend more time thinking about it before I answer. If you want you can email me.

I am so happy with the way my life is heading, and I would love it that you see how happy this wheelchair makes me.A

For a while I didn’t hear anything back from them, until one day I got an email in my inbox from my dad. He wrote:

Got your letter.I must say that the contents of the letter are giving us much pain and grief. I never thought that you would want to give up walking when so many people who cant walk so desperatly want to. It is taking me a while to sort out in my mind a proper responce to the letter.It is such a massive bombshell that please i need more time to process what you said and work out what i can say to you that will help you see that give up using your legs is not the way to go. so please dont use the wheelchair .wait till you get my letter.I am so desperately busy here ,mum is working very long hours as well,and the added burden of what you told is proving to be very hard to cope with. We might have just had a break but this has just plunged us back into a very stressful times again.I am pleased you told us but I would have rather that you would have not wanted to go down the path of not wanting to walk again.

So please wait till you get my letter before you go down that path. Mum has told me to write the letter as she unable to.I have never seen her be so totally unable to respond to any situation as she has with this thing.. She does not know what to say or do,especialy as we cant talk to anyone about it.Pray for her,for us.

Shortly after this I talked to my Aunt about it all. At first she seemed supportive of me trying to find my own way. This was until she sent me a long email. I had told her it was ok that she talk to my mum about it because I knew mum needed someone to talk to. My Aunty sent me a long email telling me about my dead Grandmother. I loved my Granny dearly. I knew she had had Polio and TB as a child, but there are some things your parents simply don’t tell you. My aunty told me in this letter that my granny spent most of her life going through surgeries to keep her out of a wheelchair. My mum had to take care of her dad, brother and sister from when she was a young girl because gran spent so much time in hospital. I know that nothing I do changes what happened to my granny. And I know that despite the fact that if gran had ended up in a chair she would have been totally dependant, that is not the case for me. Nonetheless this opened up a lot of scars in my life that I had ignored. I spent so many of my years ignoring these feelings because I had, and still have, an overwhelming responsibility for the way my parents feel. I spend so much time doing things based on what my parents feel. At the same time I came to realise how unworthy, how unloved I feel. I never share with anyone what is really going on with my life. I have this annoying voice in my head that tells me "don’t tell her how you really are, she doesn’t really want to hear, she’s just being polite when she asks how you are, she doesn’t want to know, she doesn’t care." Intellectually I know these things I tell myself are wrong…but I can’t stop it. I asked my parents to give me some space because I am trying to find a councellor to help me deal with my depression…they think I’m trying to get rid of my transabledness (I think). At any rate they are at the ignoring it stage. They have come to visit a couple of times. They email me etc and my feeling simply arent mentioned at all. I dread the day they come to visit and want to go to the food court for lunch. And I have to tell them, I can only go to the food court in my wheelchair. Or the day they come down to watch a movie with me and I tell them I never walk into the movie theatre. I really don’t know how I will handle it. In a way it’s their fault because they are choosing to put their heads in the sand.

{mospagebreak title=Older thoughts}

I know I should be happy that I’m a part time wheeler, but that simply isn’t enough. I have gone to church the last few sundays in my wheelchair, but I am still incredibly scared of having to face the "family friends" there who aren’t always there. I need my wheelchair, I don’t think I can ever live without it. I also know that I will go nuts if I carry on living how I am. I’m not kidding around anymore when I say to Sean "I help you, you help me". I think I’ll just finish off this blog with something I wrote it one night when things got too much. I haven’t changed any of it. I don’t know how I’m going to find the answers…and part of me knows that finding the answers won’t make any difference to what I know that I need…but it’s a journey that I have to take. Yes, in a way my journey is branching off so differently to how Sean was when he was my age. He didn’t have the same circumstances that I am. But at the same time, I feel I am struggling with the same emotions, and the same feelings and issues that Sean battles on a daily basis even today.

There is a difference between going to some mall four or so hours away, wheeling, occasionally smiling at someone who is watching you, telling someone to stop apologising for getting in your way, and talking to your closest of friends from your wheelchair. You feel a sense of duty towards your friends, and at the same time they are the hardest people to have accept. I would rather be wheeling among people who assume this is who I am than to try convince my friends that I’m ok even though I’m using a wheelchair now. The easiest thing to do would be to move somewhere completely new and start fresh. Get a job from your chair, make friends from your chair, go to church in your chair, but you would still be running away from the things that are making you so insecure with being who you are with the friends you left. If you really considered them your friends, why do you lie to them? Why do you tell them your ok? Your not ok. You feel the pain every time you have to leave your chair sitting there, as you go out to meet up with your friend. And then if you do take your chair, you don’t know if you could handle the explanations. I would rather be accepted as a wheeler, than be helped through the "transition"…but I have to start somewhere. What sort of life would it be if I didn’t face hardship? What sort of life would it be if all the things I want are handed to me on a silver platter? You learn to love these things more if you have struggled to obtain them. The simple task of going to the supermarket feels so gratifying if you have just had an argument with your family about the use of your chair. I don’t know if I could open up to anyone…I don’t know if I could keep anything secret…How can I open up to someone fully? How can I expose myself to someone and prevent them from seeing this part of me that seems to be consuming me every day? How can I deal with my hurt but not have to tell why? I hate to tell people how I am, I hate telling people that I’m not ok. I hate having to explain, always explaining. Can’t people just be observant? Accept what they see? Accept that this chair is part of me? If God loves me for who I am, why do I feel the exhausting struggle of having to be someone else? If I’m meant to be me, why do I have to justify being me to others? I can’t just exist. I can’t just live. The simple task of going to an appointment is a massive thrill to me, and yet I can’t share this with anyone. If I ever did open up, expose myself, I would be percieved as sick, in need of desperate help, I’d be labelled. If anyone ever fully exposed herself that person would be seen in the same fashion as I am…if that is the case, why is it that it is such a struggle to tell? Why is it such a struggle for them to just say yes and leave it at that. Even running away is too hard for me. If I went somewhere new how would I live? Would I be able to provide for myself in the life I so desperately want? And then there is the biggest question of all…would I kill myself if I faced the prospect of never being happy with the life I’ve been dealed? Would I rather die than have to live walking? Sensibility tells me that I’d never kill myself, but surely no one ever really knows this. And if I did kill myself…would I still be loved? Am I loved? Loved is just a word. I don’t know why it doesn’t have any meaning to me…loved…what is it to be loved? I don’t know.

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