“Sister, there are people who went to sleep all over the world last night, poor and rich and white and black, but they will never wake again…and all those dead folks would give anything at all, for just five minutes of this weather or ten minutes of that plowing that somebody was grumbling about.”   – Maya Angelou.

I sometimes think we are becoming a nation of whiners and complainers, especially if you look on social media or follow our political system. I don’t write about health care to complain, I am nothing but lucky, I could very easily be dead already. But health care is now a serious part of my life and I share that life and hope that it is somehow helpful to me and useful to other people.

Yesterday, I called my cardiologist and I said – I left a message actually, cardiologists rarely answer phone calls themselves –  I was never taking a statin medication again. I said I will just have to search for an alternative that works for me, keeps my pride and dignity and permits me to take control of and responsibility for my life, health and death. I told the doctor if he was uncomfortable with my decision, I would find another doctor.

I have not yet heard back.

I am one of those pliant men we all know when it comes to health care, oblivious and prideful and reluctant to accept the inevitable changes in life we all face. I practically dropped dead on the road before going to see my nurse-practitioner. When I told her I thought I had asthma, she laughed and put me on an EKG and sent me to the hospital. My lesson: if you are a man and are not feeling well, best to tell a woman.

In a sense, the treatment for my heart disease has been much more painful, difficult and stressful than the surgery itself. I was home in three days after the operation and back at work the first afternoon home. I am in almost every way healthier than I have been in many years.

Since then, I have been deeply enmeshed in a health care system that does not work as well for me, not after the miraculous surgery that worked for me so well. I suppose I have to say they do the big stuff very well, it’s the small stuff that is so wasteful, disconnected and unintentionally  cold and cruel.

In one sense, I have been searching for someone to talk to, someone who cares for years now. I think I need to let go of that.

Health care has gone the wrong way, it is rushing away from humans and making love to data and machines. I feel most days that I am nothing more than an old car needing a quick annual computer inspection. Check off the boxes and move on.

I understand that I need to find women in the health care system – they still seem to talk to patients – and when possible, nurse-practitioners or doctors somewhat outside of the system. I think they call it alternative medicine. I look for the rebels, malcontents and impoverished healers.

Yesterday, I regained my pride and sense of control, and  so much of the health that I lost after my surgery. My health did not decline because of a failed heart but because of the treatment I was told I needed.

This is, I think, the year of the woman, and the year of struggle and identity crises for men.  I hate to add to the pile-on, being a man who knows many good men,  but I have to share my feeling that most, if not all, of the men I have encountered in my immersion in the health care system remind me auto mechanics much more than holistic or humanistic physicians concerned with my health and well-being.

They don’t seem to teach doctors how to care about people any longer, or give them the time to do it. I know it isn’t their fault, but it isn’t my fault either, and I think I am often asked to understand their problems more than they are asked to understand mine.

For more than two years, I have struggled with statin medications that have caused me almost continuous pain and suffering in many different ways – pain in my legs and joints so severe I could barely walk at times, and hive-like eruptions that took a year of fruitless phone calls and visits and wasted pills, ointments and money – to determine were caused by the same pills that were eating my joints.

The male specialists I was forced to see were much more like lawyers than doctors, they were prisoners of data, of the latest research, of the best odds and the safest choices. They spent almost no time with me, asked me no questions about my life, state of mind, or preferences, and told me the data told me I needed these medications, the data did not care if I could walk or not, or was breaking out in painful and uncomfortable hives for months on end.

If they noticed my growing unease and discomfort, they never mentioned it or suggested in any way that it was as important as their data. Every pill taken against my wishes was soon to be a bitter one for me.

The truth is, it turned out, that I am allergic to these medications and simply cannot take them. The truth is there are alternative medications that can help someone like me, especially since I eat very well and carefully and have always had low cholesterol. They were always available, they were always something that could have been explored.

The truth is I was too fearful and intimidated to speak up for myself and demand a different response. When I finally did, things began to change. I began to find health.

A physician reader – a woman – wrote me this morning to point out that medical specialists are increasingly ruled by guidelines that protect them from malpractice lawsuits. Clearly, most are not taught to care about their patients in ways that are overt or visible. Nor are they taught to listen to them, or even in extraordinary circumstances, make time for them.

Every time I went to talk about these feelings, I left frustrated, disappointed and convinced that no one care about me or the quality of my life.

“The side effects of statins,” wrote my physician reader, “when they occur are very difficult and can indeed impair quality of life. It’s a perfect valid choice to stop them when the cost benefit analysis points in that direction. Longer life at any cost is not a good choice. We all have to accept the limits of reality.”

This is the first time in several years of treatment that I heard a physician say that, unfortunately she is not one of my doctors. Since I went off of these medications last week, the severe pain in my legs and joints has completely disappeared, and so have the hives that caused me so much discomfort for so many months.

It was a dermatologist who found the cause of my discomfort, he said I had to find other doctors to treat it from there. It usually takes three months to get to see him, I was lucky.

Those of you who have been reading my writing know how important walking is to me, how central to my life, how important to my health, writing and photography.  It is a fundamental part of my spirituality. To give up walking is a kind of death for me, a death of the spirit. It is not any thoughtful person’s idea of health.

Whenever I mentioned walking to a doctor, he asked how many miles I walked a day, took notes, and moved along.

There are two health care practitioners I have found who do seem to care about me and whom I trust and will rely on in the future. One is a nurse-practitioner and the other is a chiropractor with a medical degree. They know me and listen to me, I believe they care what happens to me. I have appointments with each of them to discuss diet, alternative medications, regular and holistic,  and my own idea of health – to live fully and well and in reality and to live and die with dignity.

I have the right to be cared about, and I will not any longer confuse submission with good health. Nor will I be angry or judgmental. That is not healthy either.

I have no intention of becoming one of those pain-in-the-ass patients who trawl the Internet for medical information or who tell their doctors or nurses what to do and question them like trial lawyers. I do not second-guess people who know more than I do.

I have come to understand that the key to genuine health requires me to rely on myself more, and medical authority figures and their insurance and medical association and  pharmaceutical data less.

In a sense this is a shame, since I do not pretend to know much of anything about medicine, and don’t with to learn much. It is not what interests me.

But I do know about caring and pride and the hard work that goes into a life lived fully and well, and many of the people now working in medicine do not seem to know about that or care about it.

I look forward to the challenge of being whole and healthy, it is, like all of the great challenges I have faced, ultimately a creative one. I will share the experience. How strange that today I feel healthy again. for the first time in a while.