People who soar are those who refuse to sit back, sigh, and wish things would change. They neither complain of their lot nor passively dream of some distant ship coming in. Rather, they visualize in their minds that they are not quitters; they will not allow life’s circumstances to push them down and hold them under. –Charles Swindoll
Stiff Person Syndrome, (SPS), is a a rare neurological bird. SPS is a difficult and life-altering diagnosis, hard to understand, let alone explain to others. Grief, anger, fear, guilt, and depression are common emotions. Losing one’s physical abilities and facing an uncertain future add to the frustration and fear.
The most common question/fear for everyone is prognosis. (After 20+ years, it is still an issue for me at times.) Will I get worse? How much time do I have? I realized tomorrow was never a guarantee for me before diagnosis. I took my future for granted. Now, I cherish the day. The moment is all anyone has.
Coping is a daily endeavor. It is not a one-time, come-to-terms resolution. Good and bad SPS days fluctuate while life’s problems continue to invade. For me, it is either deal with it, or lose all of me to SPS. (Deal or no deal?) I choose to be a player in life. Deal.
Several things have stood me well in living forward…”in spite of.”
– My faith and trust in God.
– Love for my family.
– Learning about SPS. (I am my own informed advocate.)
– Understanding my medications.
– Allowing myself an occasional pity party.
– A quirky sense of humor. (Laugh often)
– An interest in others. (Stay interested & interesting.)
– Developing hidden resources within myself.
– Counting my blessings.
– Cut unnecessary negatives from my life.
– Count my spoons carefully. (*Explained below.)
Life continues to be a a daily challenge but in hindsight; my life is definitely worth reliving.
Copyright © 2010