Friday, June 10, 2011

Taking a stand ... WPI

I've been unwell since I was a child. Certain people liked to call it "stress" and look the other way. Unfortunately, I wasn't one of them. It was MY body doing all that misbehaving.

Now, at 56, I have been decidedly ill for a decade and disable for four. I was willing to put up and shut up as long as I could work and support myself and my children. But afterwards? When that was no longer capable? All my efforts, ALL MY EFFORTS went into figuring out what was WRONG with me.

Twenty three doctors later I had a definite diagnosis. Chronic Fatigue Syndrome. Ironically, the person who diagnosed me FIRST is a long time close friend and a nurse at my local hospital where they don't "believe" in Chronic Fatigue Syndrome. Yet magically. all those with with it get sent my way. To quote Mary Tyler Moore, "First, You Cry."

But I digress. I am tired today and my mind more than foggy. It's been three days since I've been out of bed except for the necessities of life. Today I really CAN'T tell my story. Literally or figuratively.

What I can say with fierce determination is that while I KNOW I will die from ME/CFS complications I will NOT go silently into that good night. Nor will the other millions who share in this hideous invisible disease. WE may be invisible, but our words are NOT.

TAKE THAT, CDC. TAKE THAT, NIH. We will not be silenced. Your atrocities will not go unknown.

Thank you, Whittemore Peterson Institute and staff for your commitment to your own families and the international family of ME/CFS. Thank you for you going where no one has gone before. Thank you for being willing to fall down and get back up. Know there are millions cheering you on from their beds. Millions praying for you by name. GO YOU. GO US! To life, to life ... l'chaim.

In loving memory of those who have already lost theirs ... I miss you Dr. Sharon Kirk. I miss the you I never knew, I miss the you I knew so briefly, and I miss the you that held my hand from the other side of the country and taught me how to begin to navigate this "life."


  1. If only people could grasp the bravery of neuro-immune patients when we push our boundaries to blog in spite of the pain. We are definitely not the sort to give up. Thank you for saying it so well!

  2. Thank you for your passion and your determination...they shine through with your beautiful way with words.x

  3. Thank You for your post that echoes
    what SO Many of us feel and experience...

    Love this part ♥
    "GO YOU. GO US!
    To life, to life ... l'chaim."