What do I do?

At a social function recently, meeting up with friends and introduced to new people, at some point the inevitable question "and what do you do?", was asked by a pleasant woman I'd not met before. I had listened with interest about her profession, and I could quickly see she was an intelligent dynamic career woman who enjoyed her work. The question "and what do you do?", rattled around in my head for several moments, before I took a deep breath and tried to summarise what it is that keeps me so busy every day. I'm never quite sure how a complete stranger is going to react when I launch into the fact I have Gaucher disease and Parkinson's and what it is that fills my days with purpose. It would be so much easier if I could say "I'm an accountant" or "a lawyer", but what keeps me busy each day is far from a regular job. I don’t get paid, nor have any worker's rights or paid holiday, and as for "sick leave" - well let's just not go there! This was certainly not my chosen career, but dealt with rotten DNA, bad luck or maybe just fate, it's almost as if my path in life has been laid out for me, and I am simply following.

As I began to explain what I've been doing since being diagnosed with Parkinson's, the lady fell silent; always an unsettling response, for I'm left not knowing whether to continue, or cut my explanation short. Yet I detected a sense of interest, so let my enthusiasm pour forth, as I told her of battling two diseases and the campaign that snowballed four years ago from writing a few lines of poetry one night.

Did you ever stop and wonder how you got to where you are today? When young, the world is your oyster, and anything seems possible. Some know without doubt what they want to do with their lives, and purposefully follow dreams, turning them into reality. Other youngsters flounder a little until they find their niche  and eventually life falls into place. Then there are people like myself who have made plans, but ill health has stepped in the way and dreams thrown out like dirty dishwater, goals pushed aside, as if turning the page of a book, a new chapter of unchartered waters lay before me.

Gaucher and Parkinson's have taken me on quite a journey of self discovery and I find myself on a completely different path than the one I had envisaged when young and carefree. Maybe you have also made detours along the way. Having the courage to pick up the pieces of a broken future and move forward, making new goals and almost starting life afresh, is the best I can do in my circumstances. Memories of who I once was and what I wanted out of life are a distant recollection, but ultimately have moulded me into the person I am today.

Although I have written about the role of caregiver before, there is a significant difference between caring for someone with a common disease and someone with a rare disease. My dedicated husband undeservedly has experience and perspective from both sides, so I have written this week for The Huffington Post  specifically about the challenges of "Caregivers of Rare Diseases".