The past week has been difficult in the sarcoidosis community. First there was a suicide and then there was a death from complications from this disease and finally children of a person with this disease found their mother on the floor of her home in need of immediate care. These are only the incidents I know about. I am sure there are many more quietly suffering. When things like this happen, I am reminded that I am sick, that I have a very serious disease. Most of the time, I try not to dwell about it. I try to act as if everything is normal and I am okay. But, I am not okay. No one with this disease is truly okay. We are all on the verge of the unknown.
Staying positive and striving to live the best that I can is the only way I know how to survive the “sarcoidosis life.” Once and awhile though, reality finds a way of seeping into my otherwise protected world of self preservation. I don’t live in denial that I have this disease. Far from it. After all I write about it, frequently sharing my trials, challenges and frustrations with anyone who is kind enough to take the time to read about them. I try to live in harmony with my disease. I strive to balance the uncertainty of it all with gratitude for the life that I do have. I work daily on finding hope and I make a choice to be at peace as much as possible. I have found the only real way to have a life and have this disease is to live with a thankful heart. Things could always get worse tomorrow but today is all I have.
When disaster, death and sorrow rip through my sarcoidosis community, I am made painfully aware of the saying…”But for the grace of God go I.” At any moment, I could be the one being written about because I’m no longer here to be the writer. This reality, this knowledge, this awareness is humbling and deflating. It takes my breath away and strips me of that small bit of comfort I know is perilously built on the hope that there is more to life than my disease. This cannot possibly be what I have become!
When the reality of what this disease is capable of smacks me in the face, my shields come down and I am laid bare, made vulnerable by the depth of destruction this disease is capable of inflicting. It is probably important to be immersed in this reality from time to time, to be reminded that none of us knows what is in store. This truth, while incredibly painful to acknowledge, gives me a resolve to press on, to continue fighting for my life and look for the joy in small everyday things, to remain vigilant that I am fragile and to know that grace is with me when I remember to look for it.