Monday, 17 June 2013

My family…

I’ve always been bemused as to why my family found it (they still do)the most difficult to accept that I had a disability. You’d think that with all my problems, I’d be the one who struggles with getting my head around it. But it’s the complete opposite. September shall be the 10th anniversary of my diagnosis but since then, I’ve been the strongest member of the immediate family apart from my little brother who keeps himself to himself. This has always been a mystery to me but something that was said on the radio a few weeks back provided a logical answer.

Steve Evans is not a famous name but it should be. At the moment, he is battling with terminal stomach cancer. Unfortunately, the cancer is winning and his time is running out. Steve is an inspiration because of his light-hearted and humorous personality, which shines through even though he is aware of his probable fate. I heard him on Richard Bacon’s show (yes, I’m only 19 and listen to BBC5L in the day) in May talking about how life changed since receiving that dreaded news. Although disability is nowhere near as bad as cancer, I could empathise with all the points he was making.

Apologies but I don’t have the direct quote because I can’t remember the precise words.  However, I can paraphrase and tell you the general gist of what he said. Basically, he has found it easier to come to terms with because he is the actual one with the cancer. For example, his body getting tired and feeling the need to get more sleep is just a fact of life that he has got used to. Close family and friends are the ones that have been hit the most. They have to witness the deterioration of someone they care about. It’s harder to deal with a person you love in pain rather than yourself.

This applies to me as well. Obviously, it’s not been plain sailing but the transition from walking to using a wheelchair full-time has been relatively easy from a personal point of view because I had got used to the idea. My family have had the slow torture of witnessing my gradual demise and they must feel so hopeless. I am in control to deal with any problems, which makes things easier for me but being passive in the audience watching Ataxia strike your son/brother must be horrific.

This is a bit of an emotional blog because I           am exposing my intimate feelings (something I rarely do) but I just wanted to let my family know I’m sort of glad I am the disabled one. Ridiculous as that sounds initially, it would be harder to look on and see a loved one deteriorate. In a way, I’m being quite selfish because it all comes back to me and what I want.

Bye for now!


  1. Hi Glen. Steve Evans here. I think you para-phrased what I said very well. Am loving the "wheelchair boy tag" and thought the words in this blog were lovely. Remember regardless of the journey you are not the only one on it. All your family and friends are on it with you. Then there are others with similar journeys and all their families and friends so be sure of one thing, you’ll never be alone. Have a look at this link for Stephen Sutton, now he is inspiring.

    If you want to see more of my stuff just type “Steve Evans talk” into Youtube and it’s all there on my video link. Stay in touch my friend. Kindest regards, Steve.

    1. Hi Steve,
      Thanks for reading and glad you like the name I've given myself. Your nuggets of wisdom are really helpful so I'll definitely look at your videos now. I've just liked Stephen's Story and can already tell from the quote he is amazing. All the best and speak soon. Glen