Post Sixteen Continued… Wheelchair or Not, an Afterword.

After my last post I realised something, albeit with the help from my counsellor. It’s not what other people might think about me as an occasional wheelchair user that is holding me back, it’s what I think of myself.

This life was not meant to happen to me. I’m meant to be living in my beautiful flat in Leith, Edinburgh, with views of Edinburgh Castle to one side and Fife to the other. I’m meant to be working, advancing my career at Cyrenians, or maybe I would have moved on to another charity. I was meant to go to Antarctica. The wildest and most unlikely of dreams I ever had came true, I worked hard and I made it come true. I was chosen, trusted and selected as one of the four staff to work and live at Port Lockroy, the ‘Penguin Post Office’, for four months. My main role was going to be within the shop, I was going to be responsible for the finances, inventories and stock management. I would also be assisting with running the Post Office, non-merchandise stock control and liaison with the cruise ships. After I’d returned from Antarctica I was planning on, at some point, a short-term move to Reykjavik in Iceland, I was going to enrol in the University’s summer language course, (try to) learn Icelandic and then maybe stay longer, or not (that would be dependant on the successful, or not, learning of the Icelandic language). I’m meant to be travelling and exploring the world. I was not meant to get ill, lose everything I had worked for, move back to my hometown, be reliant on benefits and get a wheelchair. This is never how I imagined my life would turn out. I’m ashamed that I think this, but I already view myself as having failed. Failed at what? I don’t know, life I guess. Becoming a wheelchair user is just one more step in the ‘wrong’ direction. In reality, I know it will be good for me. But in my head, it’s not right.

The funny thing is, I would never think this about anyone else. Having a chronic illness and/or a disability does not equal ‘weak’, I would never suggest that anyone else who uses a wheelchair, or any other mobility aid is a failure, never. I would be appalled if I heard anyone else say such things about another person. So why am I so harsh on myself? I often say that I worry that other people feel this way about me. But the truth is, this has never come from anyone else, it’s all me. It’s how I view myself. A big part of me hates the invisibility of my illness. I know it comes from a kind place, but it’s upsetting when people tell me ‘I look well’, when they know I’m not. But for the people who don’t know me, the many strangers, when they see me walking in town, I could be a successful person for all they know, with a career, a social life and a body that works. As soon as they see me in a wheelchair, well then they’ll see me for what I really am, and that is not someone who is living their best life. Maybe I like the invisibility of my illness more than I admit to.

Saying this, I’m actually not so conceited that I think anyone pays any attention to me at all, wheelchair or not, chronic illness or not. I’m projecting what I think about myself onto others, because it’s easier to deal with what other people, strangers, ‘may’ think of me, rather than what I think of myself. That, is what I need to deal with. I need to somehow get out of my head and come to terms with the life I have, and be happy with, or at the very least, accept the life that I have.



4 thoughts on “Post Sixteen Continued… Wheelchair or Not, an Afterword.

  1. Reblogged this on Kathleen Mansfield and commented:
    Phoebe is a friend – younger than me and incapacitated. I feel for her because it is rotten, but I also recognise a lot of what she is saying as true for me. I too have a mental image of what I should be in the world and it didn’t include being a single mum or having cancer or having to retire due to ill-health I’ve just been granted early retirement through ill-health. The high tempo of secondary teaching meant I continually had oral thrush, herpes in mouth, nose and eyes, exhaustion through a low thyroid and fear that, while my body was fighting these minor immune issues, my cancer was being invited to recur (they didn’t get all the pre-cancer out due to it being back against my ribs) because I think being run-down gives these diseases a chance to take hold. Additionally, the radiotherapy has left my right side ribs very tender – to the point where I almost fainted at my last mammogram where you are forced into that bloody awful and painful compression contraption. I won’t be in a wheelchair, like Phoebe, but I am severely financially compromised – being single, having a mortgage, surviving on a pension of £260 a month – which isn’t actually possible. Hence, I am offering yoga lessons and creative writing lessons and individual tutoring of secondary pupils to make ends meet. And I need to sell my house fast. Unseen illnesses are more common than you think. Like Phoebe, I look well too. I am glad something is going right!

    Liked by 2 people

  2. Such an excellent post. Thank you. I am a 36 year old who’s had ME for nearly 6 years now and am also at the wheelchair consideration stage. We’ve just booked one at the airports for our trip in November, that is a first for me. I’ve enjoyed your other posts too… And am going to read more!
    Sending love ❤. P.s. you are a very good writer.

    Liked by 1 person

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