I took a big and somewhat frightening step towards emancipation today, I ended a year long conflict with my health providers about important medications relating to my heart surgery and my diabetes. After a year of pain and intolerable side effects, I stopped taking statin medications to lower my cholesterol, and, I am told, prolong my life. I am taking some responsibility for me and my own idea of health.

If my life should end abruptly in the near future, it is my fault, nobody else’s.  I have decided on quality of life over data, and as I told my cardiologist today, nobody lives forever. I think he disagrees, there is no data to support my claim.

If you are going to deal with the issue of health in the modern world, and our “modern” system of health care, you are going to have to deal with the fragmentation of self, the deconstruction of yourself into many separate parts, each the purview of a different doctor, branch of medicine, and  insurance, pharmaceuticals, paperwork, confusion and bureaucracy.

Modern medicine divides us into many parts, no one doctor sees or knows all of them any longer. The old family doctor, who knew us and understood us, is long gone.

They simply refer us one to the other, a vast and expensive and time-consuming rotation. The system is designed to keep lawyers and insurance companies at bay, I don’t know that health is really the point. I have hopefully concluded a year long search for my own idea of health,  which, it seems, is very much at odds with the health care system’s idea of health. As always, I am in conflict with a system, and this one is vast.

The word “health” comes from the European root of “heal,” “whole,” and “holy.” To be healthy is to literally be whole, to heal is to make something whole. My role as a father was to persuade my daughter, my only child, that she ought to have a sense of wholeness, a sense of belonging, to herself, to others, to a place and idea, a community. I think she has that sense of wholeness.

The health care system promotes a different idea. Our body parts are broken up and divided among many so-called specialists, no one knows all of us, only the parts of us they are trained and permitted to know. The each take responsibility for their part, and pass the buck to somebody else for the other parts.

I started taking statin medications several years ago after my open heart surgery. I know that statins save many lives and are much loved by doctors who treat people like me. I wish I could take them, truly. But I have given up on that idea.

Some people take these powerful medications with no side effects, I was not so fortunate. From the start, the statins attacked my joints and muscles, as they sometimes do. They made simple walking painful and sometimes, unbearable, I often shuffled like a much older man.  My beloved walks in the woods were often torturous and belabored.

Maria was angered and  horrified at the toll these medications took on me, she urged me to stop taking them. But every specialist I saw – and open heart surgery patients who are also diabetics see many – told me I must take the statins, I was, as a diabetic and heart patient, vulnerable to stroke and heart disease, the all cited voluminous date that showed people like me are at risk, and that statins can reduce cholesterol, and thus the risk.

They all pulled out their data books, they said the data was clear and  irrefutable.

They persuaded me and frightened me.

A chiropractor and friend practically begged me to stop taking them, Maria demanded I stop taking them, I wanted to stop taking them. But I was persuaded not to. Open heart surgery is a kind of attention-grabber, I had no wish to do it again.

I asked for help a number of times, I did not get help.

The statins caused so much pain that I got the dosage reduced three times, and changed brands twice. Each time I heard the same thing:  you have to take them. The pain ebbed and flowed, and since walking is one of my passions and primary sources of exercise, I felt the scale tipping out of balance. How do your measure quality of life against the data and full weight of the health care system in America?

I would usually get two or three minutes with a doctor, and there wasn’t much talk of how I lived or what I wanted, only about the dangers of heart attack or stroke, and who wants to choose to have one of those?  My primary care providers deferred to the specialists, they were sympathetic but  stayed neutral. And it takes weeks, even months to see them. I rarely slept more than a few hours, the itching and discomfort were often unbearable, distracting, and none of the potions or pills seemed to work.

Five months ago, my body began breaking out into painful and extremely uncomfortable hives, I went to the doctor three times and was diagnosed with many things – scabies, allergies, immune disorders. I took a dozen different kinds of medications, the bathroom and the bedside  table filled with tubes, cannisters, lotions, prescription steroids. I didn’t think I had scabies, it didn’t make sense, but I was told I was wrong.

I finally asked to see a dermatologist and was told the next appointment would be available in April. A friendly nurse at the health care center found me an appointment last week, I had to drive two hours, but I got to see a dermatologist who actually spent five minutes with me and asked me a few questions. He took a biopsy of one of the painful bumps and said it would either be hives or cancer. I’ll call you in a week.

A week later, a nurse called me and said the biopsy found that the hives were an allergic  reaction to medicine, usually the kind that lowers cholesterol. Statins.

I stopped taking the statins immediatly, and the pain in my legs vanished and so did the hives. I thought of all those sleepless nights, that discomfort. I called my cardiologist and although I didn’t speak to him, his nurse called to say he was prescribing a different statin.When I went to pick it up, I found to my great dismay that it was the very first statin I tried tow years ago, in a dosage so high I had it lowered two times. Didn’t they know?

I don’t know why I even took it, but by nightfall the hives were back and so was the leg pain. Statins, say the studies, sometimes attack the joints and muscles.

That was the turning point for me. I have to say my doctor is quite correct to prescribe statins, this medication is valuable in helping people with diabetes and heart disease  avoid strokes and angina and live longer. I am sorry I never really got to speak to him about the suffering they caused me, or the very complicated decision I had to make about whether to choose this widely-prescribed medication or live a life in which I could walk, be active and get some rest at night. The itching alone woke me up five or six times a night.

It was not how I chose to life, and I do not believe I was able to make that point to a single person that I talked to.

I refuse to be angry or cynical about this, we all live in this system and are, in some ways, victims and beneficiaries of it. I wouldn’t be alive if not for cardiac surgeons and my diabetes is very much under control I thank the health care system for that.

Today was either my health emancipation day or my great folly.

We shall see over time, I feel very good, more active and stronger than I have felt in a long time.

I refuse to live in this pain and discomfort. There are all kinds of ways to die, all kinds of ways to live. I called the practice nurse and said I would not be taking statins any longer, and if the doctor was uncomfortable, I would switch doctors. My cardiologist or his nurse – no one wanted to have this discussion –  then prescribed a new medication to reduce cholesterol. It is not a statin but is said to be effective, although it has its own side effects. I want to see how I will tolerate it, and we will test my blood from time to time to see how it is working.

I am not sure how death and aging came to be seen as a curable and preventable disease, an abnormal thing that can be prevented by new medicines and surgeries. As always, I ended up talking to a woman, a nurse, the only people who will actually speak to me. But they do not have all the power.

I felt liberated by my decision, even if I come to regret it, and the cardiologist seems sure that I will.  I wish the doctors could support me in my choice, but I see that the can’t, and there is no point in bothering them about it. But I don’t care to live in fear or seek health in fear. That is not health to me.

I am 69 going on 70, and it is up to me, when all is said and done, to decide how I will live and how I will die. Life is a bit of a crapshoot, that is what makes it life, and I have discovered in my long and complex journey through our society’s idea of health is that the person who knows the whole me – who knows the meaning of “health” – is me.

No one can predict the future, of my bod or the world. I will take full responsibility, at last. I mean to be whole.