I Live in Hope
Huffington Post -
Have you ever looked in the mirror and wondered who on earth is staring back at you? Parkinson's is slowly stealing away my smile and expression. If I were a poker player, this would give me a distinct advantage, but other than that, it's very difficult for others to know what I am thinking. I barely recognise myself any more, the reflection staring back at me has no expression, just a blank empty look.
An experienced doctor, despite spending years specializing in a particular field; can he really visualize and understand what it's like to live with a degenerative disease? Unless standing in a patient's shoes, it's impossible to grasp completely the daily complexities encountered with chronic disease. Parkinson's, like many neurological diseases, continually persists, and never gives up.
I've long forgotten what it feels like to feel no pain, to move my body freely, walk briskly or dare to run. How I miss those simple pleasures I once took for granted. I mourn the parts of me I've lost, my abilities and activities I can no longer do, and things I will never see. Left with no choice, I embrace the 'new me' as this is all I can do. I'm someone slightly different; a re-vamped Elaine, still fundamentally 'me' yet changed in many ways.
With Parkinson's I never know whether I'm going to have a good or bad day, and making arrangements in advance can sometimes be risky, uncertain what state I will be in on that particular day. When having a good day, it's great, and although my walking is still poor, terrible dexterity in my fingers, I put up with the many symptoms, taking advantage of a good day, and achieve as much as I can. To have a productive day, go out somewhere or have visitors over, is great when I'm feeling good.
On a bad day, it's an entirely different story and you probably wouldn't want to be around me; I don't think I would want to be around me! A bad day is when my voice can hardly be heard and its an effort to even talk on the phone, shaking and tremors are exacerbated, walking from one room to another becomes a challenge, barely able to think or make decisions - it's all just too much, an overwhelming feeling that I've simply can't take any more. No matter how cheerful and positive I remain, and I'm fairly upbeat most of the time, on occasion, my spirits sink, and Parkinson's unfortunately gets the upper-hand. At these times only a fellow sufferer can fully understand. I just want to curl up in bed, pull the covers over my head and hope to be granted grace and magically disappear from this world. A more honest description of a bad day, I cannot manage.
As strange as it may sound, some things have changed for the good. I no longer worry what people think of me, or need to put on the graces. I have been given the opportunity of being 'free' to speak out, to connect with others I may have never had the pleasure to meet, to be part of something so much bigger than myself, a sort of global Parkinson's family, all fighting for the same cause. Each of us can make a difference, together in numbers we have strength and the power to bring about change. April is Parkinson's Awareness Month, which will hopefully bring greater public understanding to a disease that millions suffer from around the world.
Parkinson's affects every aspect of one's life including that of family and friends who are brave enough to stick by through thick and thin. With heightened awareness, the vast amount of research and development going on around the world, new procedures producing positive results, doctors and scientists are tirelessly working to come up with a cure, as if in some sort of race. It is indeed a race, for many of us are running out of time.
I daydream, wondering what it would feel like to be cured. No more nasty symptoms and side effects from the many medications patients depend on to make it through each day. I close my eyes to imagine what it would be like to live a normal life again; to stroll hand in hand with my husband along the sea front, walking briskly with my dog through the forest, or even something as simple as getting out of bed unassisted. Some dream of fame or fortune, others of winning the lottery, but I dream of the day a cure is discovered and made available to all those in need. I live in hope.