What is it that makes a person dream, push themselves to the very limit, and create something phenomenal? There are probably many reasons, but one I would have to say is "hope". When suffering any chronic illness, setting achievable goals is important. Living with Gaucher and Parkinson's, the activities in which I can participate these days are pretty limited, yet I don't let this stop me. I've had to make some huge changes in my life, and I continue to forge forward unperturbed. I no longer stress over the things I can't do, but focus on what I can achieve. Coming to terms with asking for help, has possibly been the most difficult thing for me to accept. I've had to adjust and literally force myself, as it does not come easy, to know when and with what I need assistance. I can't expect family and friends to be mind readers, so swallowing my pride, I've learnt to speak up. Anxiety and stress are Parkinson's BFF (best friends forever), so I try to not indulge this lousy disease by allowing it to feed upon what it loves best.
We can all do something to make a difference, and celebrate the unique individuals we are. I am no longer afraid of embarrassing myself; Parkinson's has done a great job removing any fears of making a fool of myself. When you've revealed your story to the world, there isn't much left to hide behind. Leaving my comfort zone of anonymity I lost all inhibitions and with great conviction began to take on public speaking engagements. I once would have shied away from any public gathering, so standing in an auditorium, a sea of faces before me, is a surreal feeling. Sometimes it takes a huge event or change to push one to do things we never dreamed possible. Once you are resigned to living with any long term illness, it can be cathartic allowing one the freedom to indulge in what you are passionate about. With me, being an advocate for Gaucher and Parkinson's, writing and public speaking took over, filling a void by helping others and importantly giving my life purpose.
I am constantly coming across other fellow sufferers, both Gaucher and Parkinson's and what strikes me most, is the resilient nature and sheer determination that we all have in common. Many, like myself, far from complacent or sitting quietly, find ourselves advocating and actively making a stand. Being passionate about what you believe in can lead you to do things you would never have thought of. Sponsored walks or runs, I even recently heard of a 24 hour bake off where the proceeds went to Cancer Research. I came across a fellow Gaucher suffer, Emma Rooney, who loves to run. Having never met a Gaucher patient who participates in marathons, I was curious to hear her story, and I would like to share with you her latest triumph.
On April 21st, participants took part in this year's Boston Marathon, paying respect to those who tragically lost their lives or were injured on April 15th 2013 in the Boston Marathon bombing. A group calling themselves the "Running For Rare Diseases Team" fitted very appropriately with the theme for this year's marathon called "we run together", where team members were paired with patients representing a variety of diseases. The team represented over 20 rare diseases. One runner, Andrew Scholte , was paired with Emma Rooney. As Emma ran simultaneously in the town where she currently resides, proudly wearing green shoe laces which were a creative and novel concept used to symbolize Gaucher disease Awareness Month last year.
I heard from Emma once she had completed the marathon in just over 5 hours - and I'm sure you join me in wishing her congratulations on this fantastic achievement. It must have taken her great stamina and determination to make it to the finish line.
There are many remarkable people out there doing extraordinary things, for worthy causes. It is heart-warming to know amidst what sometimes seems a crazy world caught up in chaos, there is still much good to be found. So stand up for what you believe in and make a difference. I believe it's the highs that get us through the lows, so grab happiness when you can for these fleeting moments are what makes life worth living.