January 20, 2007
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The Tightrope Walk
I have a hard time knowing where the line is. It seems sometimes that there isn’t any way to be honest about myself and my situation without giving the impression that I’m whining and complaining, or that I’m hurting and suffering.
For many years I did my best to pass for healthy and able. It was, I suppose, a matter of ego and pride. I missed so much school that classmates tagged me, “Sicky.” One glorious period of remission when I was about 30 allowed me to keep a job for a whole year. When I relapsed and lost my last job, in 1976, I subsisted by dumpster diving and selling other people’s trash at a flea market. In 1980, pregnant with Doug and nearly immobilized, I applied for disability compensation. When it was denied, with the help of Doug’s dad I kept going.
Through all of that, only those closest to me and a few doctors knew that I had a chronic illness. None of the doctors agreed about just what it was and after one of them medicated me with four different drugs for four different symptoms and I had convulsions, I stayed away from doctors for a couple of decades. Dumpster diving, tips I got for doing psychic readings, the gardening, sewing and crafts I could do, and a lot of physical and financial assistance from my immediate family, got me by.
Outside the family, I kept up the pretense of normality. I had very little social life but occasionally someone would remark to my husband that they hadn’t seen me for a while and he’d say I was under the weather. Some of our close friends who saw me on some of my bad days figured out that I had some kind of chronic problem, and there were a few women friends I confided in about all the various diagnoses (misdiagnoses, mostly) I’d been given.
Then around the turn of the century one of my friends whom I hadn’t seen in ages told me she had been very ill and was diagnosed with fibromyalgia. Her symptoms were enough like mine that I started investigating and studying. When I told the PA at the local clinic I thought I had fibro, she agreed and went on treating me for the most dangerous symptom, dyspnea, because there wasn’t any other treatment.
After I got online, in fibromyalgia forums and from reading research abstracts from Australia and Canada, I learned how screwed up the CDC and the U.S. health system is, and I learned a more modern and comprehensive label for my disorder: myalgic encephalomyelopathy / chronic fatigue immunodysfunction syndrome, ME/CFIDS. As I have been doing most of my life I still take drugs to help me breathe, and do whatever I can and must to muddle through until the next remission.
One thing I learned from the online forums is the importance of getting this invisible illness out in the open for the sake of everyone who has it or cares about or depends on someone with it. In the supermarket, I use the shopping cart as a walker because the little electric wheelchairs are too much hassle. It’s not because I don’t want anyone to know I’m handicapped. Nor do I hesitate to get right in the face of someone who says, “But you don’t look sick.” I’m not too proud to use my handicapped parking permit. I never want to play the gimp card, but when I am too weak and uncoordinated to keep a commitment, I tell the truth.
This truth-telling seldom pays off for me in any pleasant way. There are those who respond with contempt and assume that I am just making excuses. Others respond with pity, and that bothers me even more. I have responded to sympathetic readers here on Xanga with such firm statements that I don’t want any pity, don’t need their pity, that I’ve hurt some feelings and made a few motherly types (Hi there, Marian!) hesitate to express themselves freely. At best, when I just baldly state what’s going on with me and what my body’s doing, without going into detail about how I feel about what my body’s doing, people assume I’m unhappy or suffering.
I will not allow myself to be described as a “sufferer” of a disease. I don’t suffer. Suffering is optional, as Buddha said. Pain is one of the symptoms of this damned disease, and many of my sisters (only about one person out of 5 with M.E. is male) suffer and take drugs for the pain, drugs for the depression that comes along with the pain and disability, and/or drugs for the various other symptoms — many are misdiagnosed and prescribed useless or damaging meds. I feel the pain when it comes, and I go into it until it goes away. I know what it is. It doesn’t scare me.
For most of us with this damned disease, life is a struggle. I won’t struggle because I know that, “What you resist persists,” in the words of Neale Donald Walsch’s CWG. I used to just roll back and forth to turn over in bed and would get so bound by the covers that I had to struggle to get out of them. I learned to wake up enough to do my turning without wrapping myself up. I keep seeking and finding ways to minimize the difficulty: ergonomic seats and tools, body pillows, and the humility to ask for help when I need it.
I have taken the words of Meher Baba, Bobby McFerrin and Bob Marley to heart: “Don’t worry, be happy.” One of my favorite quotes is from Ren and Stimpy: “Happy, happy, joy, joy!” Joy is a choice, just as love is. I choose joy. Life is full of compromise, trade-offs, and (much as I don’t like admitting it) limitations. Acceptance makes it easy, and attitude makes it fun. Now if I could only find a way to say all that in very few words, I’d be all set.
Comments (9)
I admire your strength.
Yes. Over the years you have taught me this.
Wow. For some reason it’s so much more common in women but almost always misdiagnosed.
Does living in Alaska help the condition or make it worse?
I read everything you write, but I quit commenting on your site because I get the impression that it has no meaning or value to you because I clearly can’t relate appropriately to a woman of your experience and illness. I can’t express sympathy because I know that means nothing from a young and relatively healthy woman. I can’t comisserate because clearly, I haven’t been through nearly the struggle you have. If there was something I could say that I thought would be of any value or meaning to you, I would say it.
if you ever learn to say it in fewer words, then i really will worry.
hi there, kathy!
[how'd you know?]
I’m sorry for what you have to deal with, life deals some shitty cards sometimes and we get to play with what we got. I admire your attitude, though, as it is certainly the best type to have. I’d like to think I could maintain that attitude if I were in your shoes (or similar shoes) but not sure that I would or could. I hope so. Life is so much easier when your outlook is a positive one, especially when dealing with adversity.
Happy Happy Joy Joy indeed.
even though i don’t quite have what you have..i still get the same looks and attitudes from people… ‘Well you don’t look sick or you look too good to be feeling that bad’… translation is you must be faking it… i choose, like you, not to let the pain rule too much of my life…at times i backslide and i can’t handle it and i hibernate until i get a grip on it… we do what you have to do and do what we can when we can… and i am still working on the asking for help part because i am not used to asking for anyone’s help in doing something… And please, never feel that you are whinning or anything like that when you mention that you are having a bad day health wise… i get those a lot and i write it out when i am really feeling on the ‘can’t handle it side’… but like you, the pain is always there… no matter what… and like you, i don’t want people’s sympathy.. it is just life and what we have to live with…and we do the best we can… it is the cards that we are dealt…
You’ve always made it clear you don’t want sympathy and those who disbelieve are just rude, in my humble opinion…
I always learn from you, whether it’s from your encyclopaedic resources or just from how you deal with life.
Always glad to hear you’re still kicking butt, even if it’s your own!
I’ve mentioned before that my sister has the same syndrome, so I understand where you are coming from. She does what she can when she can, and naps as necessary. She doesn’t sleep well…2 hrs at a time … and often is awake several hours in between. Cold does her in, as does humidity. And she lives in Texas! It’s a humidity machine there!