I write this recovery journal to share what I have learned with the good people who will follow me into recovery, where most of us go sooner or later, in one way or another, by ourselves or with those we love. I have learned a lot, and I wish to pass it on, as I move through this extraordinary and transforming experience. I am not the same person I was a few months ago, literally and figuratively, physically and spiritually.

When I was four, I had my tonsils removed, the next time I entered a hospital as a patient was more than six decades later, on July 1 of this year, when I was rushed to a hospital in an ambulance and underwent a procedure that is called open heart surgery, because they crack open your chest, stop your heart and rebuild it while you sleep. I had a double bypass, which meant two arteries had to be  replaced or rebuilt, many of the people in my ward had twice as much work done as that. But the shock to the heart and the body is great, it takes a good long while to get back to anything one would call normal.

Basically, a surgeon told me, “you are lucky to be alive, but they will kill you in a way, they stop your heart, open your chest, take arteries from a leg or arm and replaced the damaged or blocked ones to the heart.” The drama of recovery, he said, is that your heart, which will forget almost all it has learned, must learn how to bring life to your body all over again, and so will most of the organs that were halted or disrupted during the surgery.

As a diabetic, the surgery will wreak havoc with your blood sugar, and for many months, if not forever,  he said, and you will have to retrain your heart and body how to work. This was sage and prophetic advice. Things are so much better now, five months after my surgery. Recovery is a long process, the most intense part takes at least a year, but in a sense, you are never fully recovered,  you must work hard to maintain your new heart, your new reality, or it will break down again. Nearly dying definitely gets one focused in a new way.

I felt much better in five or six weeks, I feel much better than that now. That is recovery, you have to take the long view, it take what it takes, it gives back what you offer it. It helps so much to love and be loved.

I had all of these ideas about health and frequently and quite confidently wrote about them: I believed in holistic healing, I did not see conventional doctors, I went to a naturopath, did not test my blood regularly, did not have my heart checked. I was not going to live a life of medications and trips to the pharmacy and struggles with insurance companies. I have a different philosophy now.  There are still many tests I will not accept or endure, I do not want my whole life to be about my health, but the management of two chronic diseases, one that came close to being fatal, changed everything.

This coming week, for the first time in many months, I do not have a doctors appointment. So I want to say that recovery evolves. When you are in the thick of it, wrestling discomfort, sweating, dizziness and nausea,  fatigue, medications and side affects, all all the detritus of major surgery, you do not think it will ever get better. It does get better. Every single day.

My heart is strong, my diabetes is almost under control, I have dealt with the fluid retention, my chiropractor is helping the muscles in my shoulders, leg and back that were disrupted by the surgery.

Recovery is hard work, every single day. I did three months of cardiac rehab, I walk several miles every morning, I do aerobic exercises for at least 30 minutes, often twice that, five or six times a week. I chose cardiac rehab to provide a structure of my new conditioning, and it was a good decision, it has helped me understand my limits and strengthen both my heart and my body.

In the hospital, everyone seemed focused and organized, and in an odd way, it was the easiest time, because a well-trained staff did every single thing for you. All you had to do was wake up and move. Managing the health care system is perhaps the most challenging part of recovery, apart from the physical challenges and traumas. Most doctors are overwhelmed, they are test takers and readers, they do not have the time to talk with me or get to know me or answer my many questions. They are wary of saying anything that doesn’t have a number or blood level or X-ray on it. Generally, the nurses do take some time to talk, are candid and available. When I have a question or a problem, I look for a nurse. They have always helped me, my doctors saved my life, but oddly enough,  are rarely available or willing to talk to me beyond my tests.

Medicine is now a field of specialists, as I am sure everyone knows.

My cardiologists will not speak to me about my diabetes, or how it affects my heart. Neither of them will speak to me about the impact of medications like on my legs and joints, about the fluid retention caused by the surgery, about sudden fluctuations in weight that occur after surgery.  My nurse practitioner is not an endocrinologist or a cardiologist. So I am seeing a diabetes specialist, an orthopedic surgeon, a nurse-practitioner in a family practice, and of course, a cardiologist. And also a chiropractor to help with the muscle damage and strain caused by the sternum being opened up, and a massage therapist in between.

Except for the chiropractor, massage therapist and my nurse-practitioner, none of these people will talk to me about anything but the tests in front of them. The good news is that I am learning how to make decisions, and am making good ones. Expect that people will tell you different things – all the time.

Insurance pays for some of all this, does not pay for others, and nobody knows what, or how decisions are made, or whether they will be the same costs and decisions the next time you go to the pharmacy. A medication might cost nothing one week, $300 the next, and nobody has a clue why. I did get a pill box to organize the many pills I take, otherwise the bottles would crowd the tables in the living room

All of these institutions – the doctors, nurses, pharmacy, testing labs – communicate by computer with one another, and the computers quite often malfunction and get it wrong or miss it all together.  They all seem obsessed with privacy forms, yet every detail of my life is floating all over the Internet and is available to everyone in the vast system of health care. Sometimes the insurance company will fill a prescription every 30 days, the next time every 24.

I find the illusion of privacy fascinating, none of us have any left at all yet everyone I deal with claims to be protecting mine. At least three times, the charts in doctors offices have been mixed up with other patients, and one of my doctors asked me with great concern why I didn’t tell him I had bone cancer and wasn’t taking medication for it.  Because, I said, I don’t have bone cancer. Oh, he said. I am always signing authorizations to share the results of my test, but I have never yet seen one shared.

You just have to pay attention.  I have never had a test result sent to the proper doctors at the right time. The poor medical staffs spent as much time chasing digital paperwork as struggling with insurance companies. And now, whenever I go to a doctor’s office, I have to assure the receptionist that I don’t have a cold, need a mask, have a fever, or have visited West African recently.

I have learned that there are not magical experts eager to tell you what to do. You have to listen to the differing points of view – there are always many different ones – and develop your own instinct about the right choice for you. Do not be surprised if everyone you ask about a problem gives you a different answer. It’s like one of those quiz games on TV sometimes, you just have to hit the button and take a plunge. Find a nurse and you may get help.

The technology in Western medicine is amazing, they rebuilt my heat and sent it home in three days and it is healing well and I am recovering well. So in it’s own quite strange way, the system has really worked for me, and I have to say I trust it and am grateful for it. As with life, I have to take responsibility for my own heart and my own health, I can’t just turn it over to someone else and do what they say. It just doesn’t work that way.

I am grateful for my work on a spiritual life, it is as healing as any dozen prescriptions. Forces and spirits and fates I do not understand held me up like a magic carpet and swept me along. I meant to get well, I was determined to get well, I started moving in the ICU and am moving still. We all have to find our own road to recovery, my heart did, in the end, take good care of me, even if I did not take good care of it.

So I am managing my recovery, I am doing very well, I will keep at it.  My life has changed, I will not neglect my heart again or take it for granted. The aftermath of the surgery is as challenging as the operation, but I also understand that both are successful in their own way. Recovery takes patience, faith and perseverance. You can’t quite on it, fully control or grasp it, or let it make you crazy. There is a lot of good stuff in the medical system, but ultimately, I think, what is the most important is what is in your heart.

My heart is broken, but is recovering. I believe I understand it much better now, and I believe it wants to help me live a good long time in a healthy and meaningful way. Nothing has been better for my recovery than my belief in that.