I know the other day I gave a brief over view of how the interview went, but there was something I didn’t mention, something that I found fascinating and I guess showed me something I had totally forgotten. At certain points when we were talking I spotted and heard reactions from Sophie that I didn’t truly expect. It has been such a long time since I spoke to someone face to face who isn’t from a medical background, or hasn’t known me through out this process, about how I live, my health and how I cope, that I had totally forgotten how different it is to the rest of the world. I can only guess that what I saw is exactly how others who read my blog who don’t have a chronic illness will be reacting as they read, just knowing that is kind of odd to me. It doesn’t matter what happens to us in life we all settle into feeling that our lives are normal and that everyone knows, understands and feels the same way. Seeing someone being shocked or wincing in reaction to what you say, suddenly makes the whole thing just that bit different.
I have been so cut off from outside reactions for such a long time now, that seeing them a new meant that just a few left an impact that I think in some ways I needed. Don’t get me wrong Sophie did nothing and said nothing that hurt me in anyway, I still remember all to clearly how the majority of the outside world treated me through different phases of my illness. Most were great, but all to often I saw that glimpse of pity, occasionally disbelief and once or twice revulsion. I haven’t seen any of that for 7 years, for 7 years I have had the glorious feeling of being normal and allowed to just be me, without reactions other than those we all get, because we are alive and share our lives with other people. I know that I have spoken before about reactions to me pre walking stick, post stick, pre wheelchair and post chair, the every day and the exceptional, but I missed the subtle and the constant changes that grow over time and you don’t even notice. That 7 year gap and Sophie being a total stranger, well it made me notice again how people react without even knowing it. Sophie of course fell into the subtle sector, she is after all a professional interviewer, they are trained and learn not to show things the way most people do, but still things slipped through, even through there were times when she actually pushed a reaction, to get me to react, or possibly to fain the reaction she thought those listening would have, I still saw enough to bring back memories.
One of the things that I didn’t recognise fully until recently and to me explains quite a lot was how my appearance has changed over the years. I went through a spell of being totally outrageous, not just in my appearance but also in my behaviour, it was almost as though I was goading the world to react. 90% of it was just me, I loved it, I loved creating new me’s over and over, refusing to be held by the rules of respectability that I had been confined in from birth through to when I left my first husband. The other 10%, well it was my way of covering up, of hiding. I remember having what I now know was a relapse, I had trouble with my bladder and my walking, plus simple exhaustion that getting a rigged up to go out, was just too much, but I had to get on with life. So out went all the buttons and bows, the tight corsetry, all the hooks and eyes and poppers, in came Velcro, slides, pre-bundled hair pieces attached to combs and threaded with beads and ribbons. Covering my simple pull on clothes and adding that ‘je ne sais quoi’ was a long cloak speckled with sparkly cheep brooches and a fancy walking stick, I could cover up both problems to some extent. I preferred to be perceived as eccentric rather than a drunk, which is how most people explain someone who can’t walk in a straight line, the stick helped to guide me and cloak, well it covered any accident that I couldn’t conceal any other way. I was covered in tattoos, piercings, hair extensions in mad colours, you name it I tried it and in 1991, I was pretty unique, hiding not in plain sight but in exaggerated sight worked for me. I visually joined society because of work, I had to be more restrained and more business like, but still I kept what cover I could, diagnosis came once my MS was progressive and unhideable. Once I had the explanation, I became more and more average in my appearance, partly because I didn’t have the energy or the dexterity required to create detailed clothing and so on, but mainly because I didn’t need to be exuberantly eccentric any longer, I could be like anyone else when I wanted, just ill.
People reactions effect us all more than we know, I haven’t seen them for so long that I guess I had stopped feeling them or even thinking about them. Sophie’s arrival woke me up to the facts that my life is so different, so unusual that anyone looking in couldn’t do anything else than show their feelings. People who have read my blog have at times left comments or tweeted me about how what they read had made them feel, often I read their messages I then dive back to the post concerned, I read my own words searching to find what triggered their response. I have become that isolated from others emotions that I just don’t expect it, I can’t make up my mind if that is a good thing or a bad one, would my writing change if I were constantly thinking about how would this or that effect my readers, I expect it would, but Sophie entering my life, like everyone we meet has added something into my thought process. Most of us never see or notice the effect of one person who they spend a couple of hours with, has on their life and like all those people in time we forget they even made us think about anything, but it’s there, we can’t undo it. For 7 years those tiny influences have been truly tiny, counted in minutes not hours and all have been with the NHS, I enjoyed our encounter, but I couldn’t do it every day, the impact is still here, the recovery still not complete.
Read my blog from 2 years ago today – 19/08/12 – Listening but unable to oblige > http://bit.ly/PvDxGd