“You Don’t Look Sick”
[Written June, 1995, to a friend whose other friends couldn't see his true condition.]
Dear Alex,
At the last discussion meeting, you said something about how confusing it is for friends to see you in a scooter. You look as "normal" as they do! How, you wondered, do you convince them you're for real? I've got an idea for you. An idea gleaned from my years with the Kimyal tribe of Irian Jaya, Indonesia.
The Kimyals live in the remote interior of the island, high in the rugged Snow Mountain range. Life for them is rugged, too. They live in small round thatch roof huts, grow sweet potatoes and raise pigs. In fact, pigs are money: a man needs them to buy wives, gardens and other necessities. Pigs spend the night in the women's huts so someone can keep a fire going all night to keep this "savings account" from getting cold and sick. Kimyals consider sickness in humans as bad, but in pigs it's a disaster.
I lived in a mountain cabin type "Western style" house, and no, no pigs lived with me! Even so, I fell prey to all the normal tropical diseases plus some. I got little sympathy from the Kimyals, though, and sometimes wondered why.
Toward the end of my years there, I had been having heart palpitations and bouts of tachycardia. No big deal, I thought. Then one morning my heart started racing 200-plus beats a minute and I couldn't get it stopped. I knew this episode was different. Each beat was so violent that I could literally see my chest pound with each one. My colleague was a nurse, but she was on another island for vacation. And weather was bad, so I couldn't call a plane in to our single-engine size gravel airstrip to take me to medical help.
After 14 hours I talked to a missionary doctor by radio. He suggested the normal methods for getting my heart to stop racing. But neither his suggestions or any methods I had used in the past worked. At 18 hours I knew I was in danger; I was getting weak and wanting to give up.
I prayed one of those Peter-sinking-into-the-water "Lord, help!" kind of prayers. I simply said, "I'm running out of time. Neither Dr. Ken's suggestions nor my usual methods have worked. I'm going to lie down and try again. Please put into my mind what to do." I did, and He did. I filled my lungs and used my chest muscles to press my heart against my ribs as hard as I could for as long as I could hold my breath. After I started breathing again, my heart stopped racing, but almost stopped altogether. It reluctantly, laboriously lumbered along for a minute or two, then settled into regular rhythm. And I began to hurt.
The pain was incredible. I knew my heart and chest muscles were bruised, and my heart was
very tired. Consciously willing each leg to take the steps, I went to my kitchen and cooked an "Impossible Quiche". It was the week-end, so the gal who cooked for me during the week wouldn't be coming. I knew I had to eat to give my body strength, but I also knew I did not have in me the ability to cook more than one thing. I lived on the quiche and powdered milk for three days while I laid back in my "big" chair and cried.
I cried because of the pain, because of the weakness, because of relief that I was alive, because I didn't know why and because of fear. What did this mean? What was happening to my body? It wasn't just my heart - my whole central nervous system felt like it was falling apart.
As they always did, my Kimyal friends frequently dropped in to visit or check up on me. I told them I was not well. Their response was a shrugged shoulder or a soft chuckle as if I'd told a joke. Finally, Sa'ale told me, "Sick! You don't look sick! At least when we are sick we look like it. Our hair looks sick, our face looks sick, our skin looks sick - you don't look sick!"
He was right. The Kimyals make sure they look sick when they are. They smear their hair, faces and chests with pig grease and black ashes and, if they have one, put a dirty rag over their heads for good measure. Then they walk with a slouch and put on a long, long face. Everyone knows they are sick. No doubt about it.
As you can imagine, only ten months after that incident I had to leave Irian Jaya. My body had totally "crashed" with PPS. That was 1991. I went through a rapid decline which has slowed way down now. Friends who have been with me through this are so delighted about how well I am now. They'll say, "It's so good to see you looking so well!" They're genuine. But every once in awhile I still see an old friend for the first time since PPS who, as I smile from my scooter, says, "My! You're looking good!" Their confused expression and forced smile implies, "I thought you are supposed to be sick..."
We're not sick, but how to prove we're not joking? There's only one answer. Bring out the pig grease and ashes. Find a dirty rag for good measure, and don't forget to practice a long face.
Good luck Alex!
Elinor
