A few years ago I read a book about a man who was sick, in fact he was dying; wasting away from ALS, or Lou Gehrig’s disease. The book was called Tuesdays with Morrie. The author spent several Tuesdays with Morrie before he died and learned many valuable lessons from him. The point of the book, I think, was that love and compassion for oneself and others is the most important thing in life. I’m pretty sure the point of the book was not to compare yourself to this man and then beat yourself up for not being as good at being sick as he was. But that is what I decided to do while I was reading this book. This is a very old habit I have. I’ve been doing it for a very long time and I’m very good at it. Still, it got me thinking about the lessons I have learned from having a chronic illness.
I am not as strong as Morrie was. I do not have a terminal illness. I am just really tired and in pain most of the time. And I’m just trying to figure out how to live with that and maybe along the way help someone else who is suffering. Some of the most useful things I have learned have come from the years I spent with my Buddhist therapist who told me to read Tuesdays with Morrie and many other valuable things. Some of the lessons have come from the time I have spent practicing Buddhism (and I do mean practicing), others have been handed down from my grandmothers, or garnered from books. But mostly they have come from the time I have spent with myself, a person with a chronic illness.
I realize that if you spent every Tuesday with me for lets say six months you would probably not want to write a book about it. You would probably just be really bored and slightly confused. That’s why I’ve decided to write a book for you, to save you the trouble. Also, I really like to write. Writing has been the thing that has saved me from myself. That and my sense of humor.
I have been cursed with a constellation of symptoms for many years, including severe fatigue, muscle and joint pain, depression, anxiety, gastrointestinal pain, insomnia and headaches. The universal symptoms of almost every disease I have ever googled. Desperate, unable to work and barely able to function at times, I began looking for answers. I used up a lot of my resources, both financial and mental, looking for a diagnosis and of course a cure. I was always under the assumption that a diagnosis came with a cure or at least a treatment. I took every new diagnosis as if it were gospel. Believing that if I did everything I was supposed to I would get better. I thought every new piece of information was my missing link. But so far there is no big picture. No root cause; no singular disease that ties me up in a bow. I doubt any one in their right mind has wanted to be told they have an illness. But I am not in my right mind. That is what this collection of symptoms that has no name has done to me.
Western doctors have diagnosed me with fibromayalgia, lyme disease, irritable bowel syndrome, Hashimoto’s disease, reflex sympathetic dystrophy, interstitial cystitis, chronic fatigue syndrome, celiac disease and psoriatic arthritis to name a few. Holistic doctors have suggested heavy metal poisoning, adrenal insufficiency and neuro toxicity. A Tibetan doctor diagnosed me with wind disease. A Chinese doctor told me my chi was blocked. A new age body worker said that my heart wasn’t in the right place. But one of the worst things a doctor ever did, after I tearfully pleaded with him to help me find some answers, was to pat me on the head and suggest that I get a massage.
I believe that most of my doctors sincerely wanted to help but their own undiagnosed illnesses got in their way. I have since diagnosed some of those doctors with the following: Generalized God complex; don’t know but can’t admit it disease; irritable doctor syndrome; and hearing loss. To be fair, most of my doctors have been kinder to me than I have been to myself. I have diagnosed myself with chronic stupidity; bad karma; bad attitude; and temporary insanity…