It’s a permanent situation….or is it?


A week ago I saw one of my Specialists. I always look forward to seeing this particular Specialist. We have become good friends and enjoy chatting about all things French. She is mad about France and with me being born on Bastille Day and also loving France, the country, the French decor, the language, well it was just inevitable that we quickly clicked after my first appointment 3 years ago.

The discussion during this last appointment though was a little less frivolous and a lot more serious. We talked through my results and all that has been going on with my bone disease,  my surgeries, my Rheumatoid Arthritis  but mostly we talked about coming to the point where I am now just an academic study for my Specialist team. They care, don’t get me wrong but I am a genetic anomaly. Rare, special, uncategorised and troublesome in terms of how to treat and manage my bone disease but of great interest to them medically.

My bone disease cannot be treated, it is permanent. My disability is permanent. This isn’t  going away, short of a miracle. I believe in miracles so I am not discounting that possibility but I also have to, no need to, accept that my situation is permanent. My legs and dead bones will remain dead. We don’t really know what to expect next. I will always walk with aids and should really use a wheelchair but I figure while I can stand and move a little with crutches, I’m going to keep doing that, despite the pain. My Specialist agreed.

More life decisions will need to be made over time in relation to my disability and with that thought, I realised that while my disability is permanent, life doesn’t stand still and my life won’t stand still, its fluid.

The way I respond to the permanency of my disease will change over time. I will find better ways of doing things than the way I do them today. I will find ways to use my situation to help others more, where I’m able. I will continue to grow with my disease. I will learn things and experience things in life that I never would have without it. I will still  set goals that are achievable for me. I will still live a full life.

If I just focus on my disease being a permanent disability then I will struggle to move and live. I have to accept that it is permanent and without cure or treatment, otherwise I’ll be in denial and that won’t end well. I choose to accept I have a permanent life changing disability and I can still embrace life. Wishing it would go away, wondering why it came in the first place, is a normal response but 3 years into this journey with my dead and dying bones, I am embracing that this is permanent. It’s not going away but that doesn’t mean my life can’t have value and worth. I might have to dig a little deeper and look a little harder to find ways to enjoy my situation and that will always be a long term project.

What an exciting project though…discovering how to live life anew, embracing every change. It’s actually a refreshing prospect!

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