This is a hard post for me to write but I need the cathartic release. I have been simmering on this for quite a while now and I need to get it out or I will burst. At the moment, as you all know, I am embroiled in legal battles with the TAC, I am facing a permanent disability, I am in constant unremitting agony and I may never be able to have children. I am incapable of sitting, using stairs or walking or standing for very long. Sometimes the pain is so bad that I faint. I cant sleep, I often cant eat and frequently I cant even think through all the pain. My doctors are trying everything they can but the very nature of my condition is unresponsive making treatment very difficult.
Despite all this, I have managed to start studying from home, I have started on my way to what I hope is a promising art career and I am pulling my life back together. I am gathering independence with the aid of tools and I am learning to live my life and appreciate everything I have. A lot of people have helped me and I feel so lucky to have such wonderful friends, a loving and supportive husband and a fantastic dad. I have the best doctors – they are friends and seeing them is almost like a social visit – I feel good when I see my doctors because I know I am in great hands and I know they are trying their hardest. My support network is strong and I feel fantastic when I can see my friends and have a laugh at it all.
Unfortunately there is something acidic in my support network. I am being attacked on two fronts. One is a member of my family and the other is a person I have always counted as a friend.
Apparently I deserve all of this, I deserve everything the TAC is doing to me. Apparently I am a bad person for not wanting to go stir crazy locked up at home. I will answer the two people directly here.
Person 1 says that there are many people worse off than me and that I could get better if I wanted to. That it is a permanent disability because I say it is. That even if it is permanent I should hurry up and learn how to be independent- that lots of other people don’t have the support I do and they don’t have husbands. They say that I need to let Liam have a full time career rather than wanting him here with me and if I can’t get out of bed without help then I will just have to lie there. If I cant get off the toilet then I should just wait until he gets home. If I faint and end up on the floor. I should just wait.
I understand there are people more disabled than I am. I grew up with people with disabilities and I am a lot more understanding than you are. I fully appreciate that not everyone has a husband to help them – but I bet they wouldn’t say no if constant support was offered. Many of the people you are thinking about have had years if not their whole lives to get used to their disabilities and help to learn to use the correct tools and be equipped with what they need. I have had 18 months and at least a year of that we were still thinking it could come good. It is a permanent injury because my doctors say it is. We are all hopeful that that won’t be the case. I am proud of the fact that I have recovered so much independence. I can do some chores now and I take pride in them because I can do them. I can get up an down a lot of the time and I have systems in place for almost everything now. I have my reacher and my dressing stick and I am moving into my new life quite well. I work quite hard at it.
I would love Liam to be able to go back to full time work. I want him to have a career he will feel fulfilled in. I have chosen a career I know makes me very happy and I want him to feel the same joy. However, I don’t want to be a prisoner in my bed and my body because its bad for his career to help me. And he doesn’t want that either. Once, I couldn’t call him when I needed to and the results were worse for both of us and caused a much longer recovery time as a result. The hours Liam works are the ones sanctioned by my doctors. They don’t want me alone more than that. Despite this, we are working towards independence. Its hard work but the reward is worth it. It just takes time.
Person number 1 also believes that I could get better if I wanted to, that I am stupid for even thinking about an art career and that I am enormously fat. They also said that if they had a disabled child they would have had it aborted.
Most importantly – I WANT to get better!! My god, a life without pain would be the best. A life with less pain would be paradise. I am trying every sort of therapy and following my doctors suggestions rigorously. I am doing everything in my power to get better. Just because I don’t want to follow your suggestion doesn’t mean I don’t want to get better. I have talked to my Doctors about it and they don’t think it would do anything and it could make it worse. That is a specialized treatment that it not recommended for my condition.
If I could be better tomorrow I would leap at the chance. However, I still wouldn’t return to my old job. My Psych said that it was killing me slowly and I have known peace since I left. My job and career choice have nothing to do with my disability. The soul searching forced on my through this incident forced me to think clearer and work out my goals but I would have arrived at this decision eventually, even if the accident had never happened. This is who I am and who I am supposed to be. If I was better, I could just work even more on it – that’s all. Get over it. Painting is one of the few times I feel free. I feel connected and most of all I feel as though I am doing the Right Thing.
As for my weight – you are bigger than me. I have lost 4 inches since the accident off my waist and hips. I am a comfortable size 10 which is considered by most of the normal world to be quite slim. I am only going to lose more because chronic pain and my pills make me not hungry. Pain burns more calories too. Don’t blame me because you hate yourself. I am sick of you dragging me down. I have several eating disorders because of you and some of my ancillary problems now are due to those. I keep trying to get a healthier body image and it is very hard to do with you making things worse. You should be proud of what I have accomplished – not changing the goalposts.
I am not perfect. I never was. Being a size 6 doesn’t make you perfect. Having all your mobility doesn’t make you perfect. There is no such thing as perfect but there is such a thing as unconditional love and as a family member you are supposed to feel that for me as I do for you. I should have known that being a crippled size 10 artist wasn’t enough to make you love me.
Person 2 says that as I go to the occasional party and make an attempt at socializing that there is nothing actually wrong with me. This person is quite happy to extemporize at length on the nature of my condition and how I am such a faker.
I have several injuries in my neck and back. I have nerve damage that is preventing treatment of them. It is a documented problem called Reflex Sympathetic Dystrophy and is very difficult to treat. It is a permanent disability brought on by trauma that affects the nerves. It has completely wheelchair bound people and has quite a high suicide rate. Basically the nerves are acting as though the injury is acute – causing enormous inflammation, heat and pain – both generalized and local. The swelling causes treatments for the actual injuries underneath to not take effect. In effect and in every way I am locked into the acute period that should only last for a couple of weeks. This is hell on earth.
I am housebound. I cannot go out without assistance and I get very isolated at times. As this is likely to be permanent I want to try to regain my life as much as possible. I like going to parties. I like seeing people. These days, I try to make my cane look cute and I get quite drunk quite quickly to ward off the pain. If I want to dance (and by dance I mean shuffle a little) then I need extreme amounts of alcohol and painkillers.
Party preparation used to mean a luxurious bath and taking time to make sure everything is just so. These days, party preparation means lying down all day and most of the day before. It means taking liberal amounts of painkillers in advance and usually bringing some with me. It means that my husband has to help me shower and shave because I cant bend more than a couple of inches. Afterwards, I need to rest. For days. After new years it was over two weeks before I was back to my usual pain levels and mobility. Despite this, I am going to try to attend more parties this year. I am going to do more SCA and I am going to try to reclaim who I was. This does not make me a bad person.
Both people would probably take this post as my overreacting. Melodramatic sympathy gathering and morose misreading of what they have said. Of course they never meant me harm. How could I think such a thing? They are so sweet and innocent. If they believe that then they are betraying themselves too. I have been hurt deeply by people I thought cared. Whether it was intended or unintentional callous cruelty doesn’t matter. The fact is that I have done nothing to either of you to warrant such treatment and neither of you have the right.
This is as confrontational as I get unless I lose my temper (which I am close to doing – I can’t even look at the people in question, see their names or hear their voices without rage building inside me). I have no idea whether they are going to read this. I don’t really care. Blame it all on the pain if you must. Try to write it off as a misunderstanding. I know better and you know better.
I just needed to get this out and off my chest – thankyou for your patience.