The above link is of a speech I gave at FSHD GLOBALS annual Chocolate Ball fundraiser in 2017.
FSHD GLOBAL raisers funds that are then used for reasearch to help find a cure for my disease …. a rare genetic disease that at present has no treatment or cure
Facioscapulohumeral Muscular Dystrophy
I have never spoken in public before about my life with this disease and certainly not to over 650 strangers. Some of what I talk about my family has never heard before.
Sometimes you have to step out of your comfort zone, which I did, way out of my comfort zone. I’m glad I did because its given me the conference I needed to talk about it freely.
In my speech I talk about my early years and how I struggled with coming to terms with having to live my life with this disease and what it meant for my future. Especially having to watch my mum struggle with the same disease.
I also talk about my journey after I broke my knee cap back in 2012 and how this changed the direction of my life once again.
I finish off with how much I truly love my life.
My disease is so unpredictable, one day I could be watering my garden with a hose and the next day I may never water my garden again. It can happen in a heart beat, I wake the next day and I can’t hold that hose anymore because over night the muscles in my hand, arm or shoulder has stopped working, gone just like that.
Yes I see my life as a challenge, Yes it can be extremely difficult at times but only I can choose to succumb to it or fight for ever bit of independence I can, while I can and that is what I do every day.
7 years ago I broke the knee cap which set me on a different path and then 7 years later (June 2019) to almost the day I broke both my knee caps, a week apart. This time I have had to work so much harder to take back my independance because I am weaker than I was in 2012 and 7 years older.
Almost 4 weeks in hospital, bilateral patella surgery, 8 weeks in full length leg braces, no weight bearing at all for 10 weeks, I’ve had to learn to stand again, I had to let go all my independance, my dignity, my everything because of 2 silly, stupid accidents that should never have happened but they did and I am once again fighting my disease. FSHD is a horrible, nasty, sneaky disease that will take from you if you don’t keep moving. I’ve had 3 months of very little movement in my legs and an awful lot of extra strain on my arms from trying to transfer myself to and from my wheelchair multiple times a day… so the question is will I walk again? If I have anything to say about this, then YES!!! I’m going to give it all I’ve got. I’ve started standing with assistance in these last few weeks and yesterday Thursday 19th September I took my first few steps, all being though backwards but I did it!! I will walk again, even if it’s only backwards. I’ll be happy with that.
I’d very much like to give some in site to the general population who may find themselves in a conversation with a person who has some kind of disability, in my case I get about on wheels instead of legs.
Please don’t belittle us by saying silly things like
* I hope you’ve got a license for that
* oh you poor thing
* it’s a shame, someone so young and beautiful
* your so brave
*or ignore you
* answering my question by addressing my carer and not me, talking over my head.
I maybe look different to most people because I use wheels for legs but really I’m just like you. I have a heart beat, I breathe the same air as you, I can think and speak for myself, I want what most people want and that is to live a full and happy life in a world where we are all equal. I have the same hopes and dreams, I just want to feel included, I want to be able to leave my house without having to think about am I going to be able to get into that restaurant or shop or office or will the bathroom fit my wheelchair or will I manage to open the toilet doors on my own from my wheelchair or does the hotel have an accessible room to suit my needs, or can I get my chair up onto that footpath safely, or having to plan my walking route so I can travel on footpaths and not roads.
I want to encourage people to just say hello, we don’t bite. Just please don’t ignore us. We have a lot of goodness to offer this world so give us a fair go…
My dream is to one day own my own business. Its going to help my fellow adult warriors enjoy longer days out and about.