I remember a time when I looked forward to the weekend, the freedom from work, although I often did several hours here at home, but free from the emails, the calls and demands. Weekends had a special feel through my final working years, before that I just didn’t understand the fuss people made, for every job I had had over the previous years, well I worked 7 days a week, if the work was there. Spend your life in either hospitality or entertainment and weekends mean just more work, not less. But weekends just after I received my wheelchair, well they held the promise of normality, going out shopping and then to the pub in the hope of meeting up with friends. I didn’t know what it was about, but those few short weeks filled me with a desire to actually do things I had never done before, why would I want to head out to the city center and shop? I had for years bought everything on line, and the pub, well yes I used to go there but I hadn’t for years and nearly everyone I knew, no longer did. Yet for 5 or 6 weeks I did all these strange things, now I think it was more about independence than anything else. I needed to go there and show the world that although my life had been taken over by illness, I was still part of that world. I don’t know what it is like now but the claims that everywhere was wheelchair friendly was a lie and my requests for aid more numerous than I could deal with, instead of being free I was indebted to scores of complete strangers. I was trying to force myself back into a world that had actually disappeared during the time I was unable to be there to follow it. I guess that every stage of illness holds that that point when we give in to suggestions just too late to be really able to make the most of it. I for years refused to us a walking stick, only to find when I gave in, I was once again a person able to function, if just a little slowly but without falling over. That you would think should have been a less to learn, don’t resist do what is needed and live again, so why did it take a couple of years of nagging to let them have a wheelchair made for me. More years of fighting until I couldn’t manage at all the simple act of getting in and out of the bath, to use the over head shower. To eventually agree and have fitted a simple walk in shower with a stool, making bathing not just safer but simpler as well. Every simple little step that everyone know was the right thing to do and I fought with talons and teeth to just do things my way.
I don’t know if it is just me, or if everyone out there who is chronically ill have the same problem, not being able to listen to others with your best interest at heart? It has taken my a really long time to accept that and to realise that help isn’t a dirty word, but it doesn’t stop my from resisting even the smallest of assistance. There is a list of suggestions that have been made to me in the years that I have found myself trapped here, most I don’t actually even totally remember but I have said no all the way along, even to things like grab bars, in fact anything that gives away that this is the home of an invalid, despite the fact that I now actually look like one. There is still a resistance inside me to asking for or accepting anything that makes that even clearer, despite enough lessons to teach me the opposite. The biggest problem with any gadgets is the promise they hold isn’t actually possible, as the promise is something we create in our own heads. The wheelchair delivered a huge assistance in keeping me working, but the dream that it would allow me a normal life, just like the one I had before, well it just didn’t happen. We all build up this illusions that somehow we can step back over the years, that the latest gadget is going to give us real independence and transform our lives, yet all of them land up with a disappointment attached. So when is the right time to accept help, before you really need it and haven’t attached a magical spell on them, or once you can no longer manage without them and we have illusions the size of a mountain attached. Right now I can make my way around the house with things just as they are, but I know that as my muscles are weakening it will getting harder and I will need changes to be made to our home, just so I can be here by myself, but where is that crucial point, before the first accident or before I have had any?
Right now I can feel my body changing, I have no way of knowing is this just a spell of feeling rotten and will it all return to normal when it is ready, or is this something that is just going to get worse. That is always the problem, will it go or will it stay, nothing that happens has a way of spelling it out, saying here we are now live with it, or here we are just for a visit. So we struggle on, telling ourselves it will be OK, even when we are stuck unable to find the strength to stand up, unable to get to anywhere that will helps us get up. I guess we all resist admitting we are getting worse, it’s just like admitting you are old, it’s something none of us like to admit to ourselves far less any one else. I know I am not alone in this dilemma, I’m not the only one who can’t decide when is the point this has to be done. So what is the answer?