Pulling Back The Covers

On Tuesday, July 18, 2000, I fell asleep taking a shower and I joked bittersweetly that my life went down the drain, leaving a broken, battered and, so I’m told, beyond repair new me.  It took a cat named Goo, a horse named Barclay and voices from the shadows to remind me that though my life changed dramatically, it hadn’t actually ended, and broken or not, I still had dreams to pursue and differences I could make. 

From that day, it took until October 2006 and visits with more doctors than I can count in four states to learn that my immune system is faulty, that there is no way to repair the damaged cells and that I had Chronic Fatigue Syndrome.  It isn’t something I talk about much.  I’m from Ohio.  We don’t talk, discuss or relate.  We deal.  Besides, just the name of this illness makes me cringe.  It is so much, much more than being tired all the time.  Eleven years later, I tell my husband that I wish I felt so good as to just be tired.  Usually, I refer to it by its other name — Chronic Fatigue Immune Deficiency Syndrome (CFIDS) — because at least it points out that this illness is more than being tired.

Mostly, though, I am fearful.  I fear being told I’m just depressed or that if I just exercised more, I’d get over it.  I fear being told if I ate better, lived a more balanced life, got more fresh air, I’d feel better.  I fear being told that everybody’s tired, get over it. I fear being told that there’s nothing that can be done for you so don’t bother showing up at my door.  I know none of these things are true, and these fears I have faced — from comments made to countless remedies tried and failed.  It is exhausting and painful to listen to cruel comments and condescending judgments when I’m fighting so hard to make it through the moment, the day, my life and I don’t know how I can possibly find the strength to fight another battle.  I let my fears control me. 

I also fear being perceived as lazy and weak because I don’t get better no matter what I do and that means somehow it must be my fault after all. I just haven’t tried hard enough.  I fear losing my job should my employers find out. So much of our self worth is tied up in our professional lives; losing my job would be like saying, see, you really are broken beyond repair.  You can’t even support yourself.  You and your defective cells are a waste of space.  I have not faced these fears and I have no reason to believe they are true.  Not all fears are logical.  But there does come a time when they must be faced.

For me, that time is now. 

Which brings me back to a cat named Goo and horse named Barclay.  For as long as I can remember, growing up I wanted two things more than anything — to be a veterinarian and to learn to ride a horse.  I read all the books on animals and horses I could.  At the county fair, I’d get “lost,” in the horse barn — the rest of my family moving on while I stayed beyond to stare in wonder at all those magnificent creatures.  For career day in high school I’d be first to sign up to visit a vet’s office.  We had to put down two choices; I never had another one.

I grew up and moved on.  I left the horses and dreams of rodeos, trail rides and camping beside an open fire and under a starry sky behind.  I told myself I wasn’t cut out to be a vet.

This year, my cat Goo became sick.  So sick, I thought he would die. He spent over a week at the emergency veterinary’s office.  I brought him home, complete with feeding tube and instructions on how to help nurse him to recovery. For two months, I mixed his special mixture of food in the blender and fed him through his feeding tube.  I gave him his medicine three times a day and made sure he ate, drank and used the bathroom.  Never did I think I would pay so much attention to the bowel movements of a cat.  Yet, in those two months I was a vet.  True, I didn’t diagnose.  I didn’t operate.  I didn’t put in or remove his tube.  But, slowly and sure, I did help him recover. My “loveable lump” remains my lovable lump and I’ve never been so happy to see a cat soaking up the sun.

This year I also took horse riding lessons.  The first horse I rode was Barclay, an Arabian.  Oh my.  Of all the horses I dreamed about owning (and maybe raising), Arabians were in the top two.  I had died and gone to heaven.  I don’t think any kid in a candy store ever felt such happiness and joy as I did riding around that ring.  Barclay quickly became my favorite of the horses I rode during those lessons.  Alas, the riding was proved too much and I spent too much time recovering after lessons.  I donated my remaining lessons.  I can only hope whoever used them felt the tiniest bit of joy that I felt riding around that ring.

Caring for Goo and taking riding lessons, prompted me to think about those childhood dreams.  I told myself I changed my mind about being a vet because I didn’t have the patience or temperament.  Really, though, what I wanted most was to write.  My writing path took me on an internship and job at a school of medicine and later reporting on hospitals and writing about health care.  I didn’t know it was leading me to here and a way to cope with my own illness and maybe help others in the process.

I should know that, though.  Writing is powerful.  Words have a way to heal us in ways medicine can’t.  They can provide laughter, tears, information and common ground.  They have been the catalyst for change.  They have shed light on the darkest of times. They do make a difference.

Recently I watched a documentary called “Voices From the Shadows.”  It’s a British documentary that chronicles several families who have loved ones suffering from CFIDS or myalgic encephalomyelitis (ME) as it’s called in most countries besides the United States. The documentary talks about the devastating consequences psychiatric prejudices and medical ignorance can have in treating —or I should say, not treating — the illness.  It was heartbreaking, anger-inducing and tear-causing.  I turned it off multiple times.  It was too painful. Yet, I had to watch.  These people were suffering from what I go through every day — and at much worse levels.

I spend portions of every day in bed, some days more than others. Some days I hurt.  Even the covers on the bed in which I seek solace cause pain. My head is filled with wet cement and my brain moves like Jello. I lose my voice. I don’t remember words or I make them up. I sleep, but wake up feeling as if I’ve been running a marathon or have been denied sleep for days.  I can’t sleep, my body both wired and tired.  Some days I must chose between work or a shower, eating or sleeping, giving in or fighting on.  Some days I don’t get to chose.  Yet, I am lucky.  I am able to get up, feed myself, dress myself, leave the house.   The people in this documentary were bedridden and, some, fed through straws.  They were disbelieved and denied care.  Some were pulled from their home, forcibly committed to insane asylums.  Family members were accused of enabling and inflicting abuse for seeking help and refusing to take the word of the “authorities” that nothing was wrong with their loved ones.  Most of those suffering from ME in the documentary died. Their autopsies revealed multiple physical problems.  There were no apologies.  There were no do-overs. 

It was motivating.  Words — stories — can do that.  My next crash and that could be me.  It is others.  It doesn’t need to be.  I write about the law because I believe that although wrongs are committed, rights can be made.  I write picture books because I believe everyone should learn to read and see where the world can take them. 

I will write about my battle with CFIDS because I believe there should be no voices in the shadow.  There should only be light.