All of Me
In 1996 I was diagnosed with a chronic illness. Multiple Sclerosis for the curious among you. After the initial shock wore off, life carried on as usual.
Life with a chronic illness has to carry on as normal, or you end up being one of those people who take to their beds when they don’t need to and almost invalid themselves out of life.
I understand it - there is a huge grieving process to be gone through; the loss of the person you thought you were has to be aligned with the person you now see yourself as. I count myself lucky in that who I am and who I see myself as has never been in question.
I am very much me. When asked how I identify, then I’m afraid the answer is just Me. Always has been and always will be. (Whatever you identify as is your privilege, and I’ll accept it. Unless you identify with the Trumpenmusken.)
Regardless of what others have tried to mould me into, the me that’s on the inside eventually surfaces. She won’t be told.
Whenever I have been job hunting, agencies always tried to tell me not to wear my silver jewellery, my bangles, not to show who I am or reveal my likes and dislikes but they missed a huge trick there. Those interviewers may have been the ones holding the job interview, but at the same time, I was also interviewing them.
If they do not want a Goth with curves, purple curls, a strong mind and a chronic illness then I most certainly do not want to work for them. If I cannot be me, then you don’t get me.
If you are the person who does not want me, then honestly? It will probably turn out that you are the person or place that I don’t need to be either. It’s also absolutely your loss.
Hands up, I have made a few mistakes over the years and got hurt when someone didn’t actually feel the same about me as they said they did, but looking back I know that I dodged quite a few bullets. Mostly work-wise, but some personal ones too.
Anyway, the reason I started this post was actually to talk about having a chronic illness but if you have ever met me you will know that my conversations are free range.
What I wanted to say was that yes, I have a chronic illness but due to genetics or simply the luck of the draw, I am not chronically ill. I never think of myself as ill. Even when I’ve been in hospital, I’ve always been just a person to whom something has happened.
This is not me, I don’t do ruffles but this is the sort of image that comes ot my mind when I think of being ill.
The sudden thought of “I have a chronic illness but I am not chronically ill” came to me whilst reading another ‘stack, and it made me run to the computer and start typing.
It also made me realise that the reason I can say with utter truthfulness to my neurologist that I am the luckiest woman ever, is that I truly do think I am.
My flavour of MS is relapsing remitting. They call it benign. I can assure you that when an attack hits it doesn’t feel benign, but then it (mostly) goes away again. I say mostly because it can leave tiny trails of non sparking evidence behind, where the nerves become non conductive or the skin forgets what it’s mean to do but…I’m still me and I am still in here, as determined as I can be.
My fingertips might be numb, but I can write, even if it does take some effort.
I can hold hands, I can hug and I can cook.
Yes, I have to re-learn the ways after each episode, but I am present enough still to do so.
Doing up a button is problematic? That’s what zips and press-studs are for.
I can’t feel a needle or a hair grip or a tissue on the floor to pick it up, but that’s where the Reaching Thing comes in. Or a lump of sticky BluTac.
When I can’t feel the floor then heavy boots get brought into play, laced up tight so I ‘feel’ the boot making contact, even if the soles of my feet and my toes feel carved from unyielding painful stone. Granite yet full of the most minute electrical crackles, sand between my toes and shades of what it was the week before.
Yet still there I am.
I can live a so called normal life, even after the acquisition of a chronic illness and the ‘life changing’ injuries of two broken shoulders. You’d better believe I leaned into every last thing that would help me when that happened, even down to utilising a pasta server’s curved handle to help me pull bra staps onto my shoulders.
People may have a disability, but often we are more disabled by the world and the attitudes in it. It’s not designed for people like us. It is designed for the ‘normal’ size and shape, and the able bodied. The attitudes which want us to force ourselves into gaps that are not made for us, not ones of “Let’s make the things fit the people instead of forcing people to fit the things.”
Accessibility for all, not just the ‘average Joe’.
Also totally agree. Back when I was last job hunting I had the purple hair but not the MS and definitely did not want to be working somewhere that wouldn't accept me as I was. Some 16 or so years down the line, one MS diagnosis and 2 promotions later, I have stuck with the organisation that did accept me, so that was probably a good call. I also like to think that being part of the team that trains our new starters I am a visible signal that difference is welcome.
There is a small group of people in the organisation who have MS. We get together virtually every so often to chat and compare notes (not always about MS) and the discussion we had last time also reflected on how lucky we were, mostly just getting on with our lives. We may have MS but MS does not have us.
Totally agree on the whole “being yourself” thing. As someone who is currently looking for a new role, who has worked in a number of corporate industries where conformity is encouraged, I also use the whole “if you’re not willing to acceptable as I am, we’re probably not going to get along” rule. Now, I am somewhat lucky that I can pass as “a normal person” in not having visible differences such as hair of different colour or length, visible tattoos or piercings, et cetera, but I do pride myself in being myself in my sartorial choices, which is something I do not wish to compromise. In fact, I do get complements on my choices, which I feel, in some cases, are expressions of people wishing they could make similar choices. So yes, we should all let our flags fly, wherever possible!