I recently saw one of my favourite 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 as am I. With me being born on Bastille Day and also loving French decor, the food and the language, well it was just inevitable that we quickly clicked after my first appointment 4 years ago.
An Academic Study
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 Rare Bone Disease.
All is progressing…..unfortunately in the wrong direction. We talked about coming to the point where I am now 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 and progressive. 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 require a wheelchair or scooter outside of the home, eventually inside too.
I can walk, aided by crutches, about 200 metres. While I can stand and move like that, I’m going to keep trying, despite the pain. My Medical team agree it’s a good idea.
This Is Actually Happening to Me!
It was a little disconcerting when my Specialist was relieved that I have permanent residential care approval and the highest home care package approved. It made everything hit home.
This is real. This is happening to me. Not someone I know or care for but it’s me.
I think at that point in our conversation I had one of those out-of-body experiences. It was like I was in the room but not quite connected.
I’ve had many surreal experiences, as I’ve journeyed along this chronic illness path. One of those was when I was first told to prepare myself for needing a stoma. Again it’s not something you just go, “Ok, thanks, that’s great news…sign me up now.”
These things are life changing. They take time to digest and time to adjust to.
Hearing that my treatment is now palliative is very confronting.
It doesn’t mean I’m about to die in the immediate future. It does though make me feel like I might be on an escalator, moving in that direction a little quicker than the average person.
Life Changing Decisions
More life changing 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.
My legs might not move but life will soldier on.
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 my disease. I will still set goals that are achievable for me. I will still live a full life in a very different way.
Choosing To Accept Life With My Disability
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 4 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. Every new challenge presents an opportunity for me to learn and grow.
I need to continually remind myself that life isn’t over. It’s just different.
It’s actually a refreshing prospect! It can be life changing in a positive way.
You may be interested in another related recent blog post Is Acceptance Just Resignation?
If you’re looking for genuine support, care, understanding and friendship, you are so welcome to join my closed Facebook support forum, Medical Musings with Friends . It’s a safe place to connect with others living with chronic and complex diseases, who truly understand the daily challenges. A warm welcome awaits.
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