Rare Disease Day

Today is Rare Disease Day. (Or, is it Rare Disease Awareness Day?)  Because of this occasion, I thought it would be appropriate to write about my feelings toward my illness, Systemic Mastocytosis, and awareness days such as today.

In short, I suppose you could say that I feel similar about today's awareness day as I do on Memorial Day. On Memorial Day, I'm reminded of all the ghosts whom have left empty holes not only in my life, but it seems like in my soul as well.  Memorial Day is not a pleasant day for me and I tend to lock myself in my home on Memorial Day weekend. I don't want to watch movies of war... I don't like the memories fireworks evoke... I don't want to do anything which will remind me of what I try so hard to put into the back of my mind every day.

Rare Disease Day feels the same to me and only reminds me of my early struggles with this illness... how long ago that was (read how unbearably long I have been struggling)... the support groups and how they quickly outlive their usefulness (at some point you realize you must live your life by moving beyond the support groups)... the other patients in these support groups whom have succumbed to this illness... and all the frustrations of trying to live as normal a life as possible while struggling with this new life caused by Systemic Mastocytosis.

Rare Disease Day reminds me of how much I had to fight for effective medical care... how many quacks I had to fire because they insisted I really only suffered from migraines, anxiety, and/or depression... how this search for answers and possibly a cure to my health problems lasted for years and caused unnecessary emotional stress... and how fragile life is for every one of us and that this fragility can cause an imbalance in our lives with just the smallest of nudges.

Ummph...  Thank you "Rare Disease Day" for these wonderful reminders.

As time progresses, I find myself minimizing and normalizing everything that has happened to me in regard to my health. You'd think that most people would exaggerate stories more and more as time progresses. I'm finding that when it comes to my health, I do the opposite. Unfortunately, after 12 years or so with this rare, incurable illness, I tend to minimize when talking with my doctors too which is such a problem that I should probably write about it another time.

I think there are two reasons for this happening. The first is because I truly would like to forget about all these problems if only for enough time each day to enjoy a few simple activities. I prefer to live my life as "normal" as possible. There are constant reminders throughout each and every day to remind me of this illness but I try to avoid dwelling on the struggles. I certainly must accept the illness and deal with the resulting struggles, but I do not like dwelling on either of these things. So, in my head, I think I minimize everything related to this illness and sort of put it on the "back burner". This is especially true over time and much time has passed since procuring this rare illness.

The other reason I tend to minimize and normalize all these health issues is related to my ever-changing "new normal". As my health worsens, what is considered normal today is different than what was normal yesterday, or last month, or last year, and especially when compared to when I was healthy.

Truth be told, at this stage of my illness, I have a very difficult time remembering what it was like to be healthy. It is very hard to remember being able to do anything without debilitating and excruciating pain. It is hard to remember a time when I didn't have to carefully manage my energy. It is difficult, if not impossible, to accurately remember entering a room while standing tall and proud with the effortless finesse and aplomb of a healthy, physically fit and emotionally strong body. For a long time, although what seems like a few lifetimes ago, this was indeed normal for me.

Basically, what I consider "normal" for me today, most people would find devastating and, at times, akin to physical and emotional torture.

I've experienced much in my life and it seems like those effortless, strong healthy days were several lifetimes ago. Those healthy days were so long ago that I sometimes wonder if those days were even real. Sometimes, however, I relive those days in my dreams... in these exceptionally rare dreams, I can effortlessly and painlessly run, jump, glide, and move in any way I desire... smoothly, painlessly, effortlessly, strongly. These dreams, however, are as rare as my rare illness.

On Rare Disease Day... I'm reminded of how far my health has declined and how much my health has negatively impacted my life... the quality of that life... and even the quantity of life.

I don't like days like today. Days like today, awareness days, seem more like a ridiculous reason for those of us suffering from rare illnesses to have a 'love-fest' and pat each other on the back for simply enduring something which is completely out of our control.  I'm not a 'love-fest' kind of guy and kind of detest these hollow, pointless pats on the back. Don't get me wrong, I definitely believe in recognizing, awarding and celebrating outstanding behavior. I don't see that in today. I simply do not like days such as today. 

Although I am overwhelmingly exhausted today, I'm now going to go attempt to accomplish something, anything... while trying to push all thoughts of my rare illness out of my head so I could perhaps find a few moments of contentment in what I can do...