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Being human Medicine Reflections on Life, Being Human, and Medicine

Keep Calm and Live On: Lessons from Illness and Travels through Turkey

Sometimes people will ask me about what I have learned from being a patient that impacts the way that I function as a physician.

The answer is that there are many things. I have touched on some of them in this blog. One of the key things I think is summarized in this: “It is what it is.” 

We were traveling through Turkey on a family vacation along with my aunt and uncle. Asghar had put on a scientific meeting in Istanbul, and I was invited to speak. After the meeting we took the opportunity to travel through Turkey. We rented a multi-passenger van and had a wonderful time traveling to cities such as Troas (Troy), Assos, Ephesus, Kusadasi, among others. 

We had a GPS that guided us along nicely (as long as I put in the correct destination!) The trip was amazing and so much fun, but was not without moments of stress or confusion. As we tried to figure things out, we learned a valuable phrase and lesson from our aunt as she would say, “It is what it is!” That would be wonderfully calming as we realized that we could only control so much, and we would make the best of the circumstances.

At one point we were headed across the countryside with a final goal of the ferry terminal that would take us back to Istanbul. We needed to catch this ferry across the Sea of Marmara. This would take us to where we could return our van and then fly back home the next day. I was dutifully following the GPS directions when at one point it said, “In 50 meters turn left on ‘unnamed road’.” 

That did not sound good. 

The road didn’t look good either! We started scrambling and looking. Navigator Sarah took charge and redirected our path. The alternative path led us to a road that ended up being closed! At one point we went over a mountain pass and came upon a police check point. The policemen wore military uniforms and had large automatic rifles. As we pulled up, I rolled down the window and hoped they spoke English. “We are lost,” I nervously said as I smiled at them.  They looked at our van full of family and literally laughed and smiled and just waved their arms for us to keep driving. 

That didn’t help us to know where to go but, “It is what it is!” 

Eventually we realized that when I had programmed the GPS, I had entered the wrong ferry terminal. Once again, navigator Sarah was on the job correcting our pathway, but my error had burned away a lot of time.  I was getting anxious that we would not catch the ferry in time. (The last one of the day.)

“It is what it is …” 

Eventually we ended up on a gravel connecting side road that connected to the main road toward the ferry. Car and after car flew without a gap as the time ticked away. There was a steep incline up to get up onto the very busy main road. The van was underpowered with a six speed manual transmission. Slipping the clutch and waiting for any gap I could see I did my best to gun the engine, wheels slipping in the gravel as we accelerated, and then shifting through the gears to get up to speed. 

“It is what it is …”

Eventually we approached the ferry terminal. Did we have enough time? Would they let us on? As we pulled up we were directed immediately onto the ferry. The gates were closed behind us. We had caught the ferry but with just minutes (seconds) to spare! 

Sigh. We laughed in relief. And at the goats poking their heads out of the truck front in back of us!

“It is what it is…”

Did I mention that we had a similar experience catching this ferry in the other direction earlier in our trip? For that one we had gotten into the line for the wrong ferry (signs in Turkish) and didn’t realize it until the last minute. That time also as we drove over to the correct line we went directly on the ferry as one of the last vehicles on board before it left.

What does this have to do with medicine and my health journey?

My primary residual symptom is fatigue. It is hard for me to have my brain wanting to do dozens of things and yet my body being limited. I start the day with grand goals and ideas. I end the day happy to sit in my chair and relax. If I push too hard, I will feel my adrenal insufficiency symptoms (deep fatigue, diffuse muscle achiness, lightheadedness and even at times chills). I have tried a variety of things to counter this. I have been on higher steroid doses. I have tried multiple times per day dosing of short acting hydrocortisone. I have tried longer acting prednisone. I have taken another steroid called fludrocortisone along with the hydrocortisone or prednisone. While I am much more stable now, I am not the way I was before. 

People have asked me what has happened to my blog. The truth of the matter is that with my work schedule I don’t currently have the same time at home in the morning that I used to. When I get home at night, I am tired and with that my creativity and drive has faded.

We have considered my work schedule and revisited that a number of times.  I stepped down from my leadership role as Advanced Heart Failure section chief.  In years gone by I was so driven by things that I wanted to see change that I pushed myself front and center into a variety of leadership roles. But now, my body will not let me do the things in the way that my brain wants me to do them.

We have continued to shift things. We moved to Holland, and I shifted into an outreach role. This is something that I believe in, and I figured, “If I don’t have enough energy to do everything, I will pick something to work on that I believe in.” With that, taking call and rounding in Grand Rapids became much harder. This fall I gave up call and rounding in Grand Rapids and shifted to taking call in Holland. 

It is odd to not be rounding on the advanced heart failure services in Grand Rapids. I miss the people and the challenges there but, “It is what it is.” 

Every day in practice I work to help patients with heart failure. Many (most) of them improve with medical treatment. Most however are left with some residual symptoms.  Within their improvement they still are not the same as they were before. They often end up having to grieve who they were before and accept who they are now. 

The hardest are “the walking wounded.” 

These are patients for whom their heart condition has stabilized but they have persistent limiting symptoms. I explain to them that I am not worried about them dying. I am just sorry that we do not yet have an answer to have them feel better than they are. “You are not sick enough for heart transplant. You also likely have good survival. However, I recognize your limiting symptoms, and I am sorry but this is about as good as it will be for you for now.”

“It is what it is …”

I find that there are a couple of responses people make to chronic limiting symptoms: 

  1. Option 1: Exhausting efforts to overcome and not accept the limitations. Do not get me wrong, it is good to be certain that we are not missing anything that can help you get better. I love it if you opt to get a second opinion. I would love to be wrong and have you get better. It is good to seek new options or things that can help you. But in the midst of that, option 1 people can often drive themselves crazy by continually trying to recapture what they cannot get back.
  2. Option 2: Acceptance of the new reality and then looking at how to enjoy life despite the limitations. 

“It is what it is …”

Let me give you an example that is common:  Insomnia and sleep disorders are unfortunately common as people age. Once people get into their 80s this is almost the norm. Sleep experts tell us that sleep efficiency changes as we age and while it is not normal, we do not have good treatments to make things “normal” again.  How people respond to this falls into two categories:

  1. Frustration and suffering: These people lay in bed fuming and frustrated about not being able to sleep. They may cycle through a long list of sleep aides trying to recapture the times when they would lay down and quickly fall asleep and magically wake up 8 hours later. When that does not happen, they get more and more frustrated.
  2. Rolling with the punches: When they can’t sleep, they do something soothing. They might read or pray. If they are wide awake, they will get up and sit in a comfortable chair and just relax. “It is what it is …” Once they are sleepy again, they will go back to bed. If they are tired the next day, they will pause and take a brief nap. 

I am not saying that it is wrong to look for and address anything that might be driving your sleeplessness. Of course do that. But often there are no good answers or at least not ones that will completely cure the sleep disturbances. Within that understanding you will be far happier, and far better to take the 2nd approach above.

I won’t promise that I am good at living this. I still fight against it. But at least I know the principle now.

One patient was clearly hospice appropriate. His heart was very weak. His blood pressure was low, and he could not tolerate much in terms of heart protective medicines. His kidneys were failing. I went in to talk to him about hospice and his goals of care. I was open with him about my concerns.

He stopped me, “Doctor, I want you to listen to me. A few weeks ago my grandson was over. We were sitting in the back yard and looking up at the stars. We were talking and dreaming about all the amazing things in the universe and what could be out there. As long as I can do that, I am happy. I might be feeling short of breath but if I can sit in the back yard and stare at the stars with my grandchildren, I want to do anything I can to remain alive.” [1]

“It is what it is …”

He was rebuking me. Perhaps I was wanting to “solve his problem.” It would be easier for me to have him pass away then to be faced with his chronic limiting symptoms that I could not improve. He was telling me that he had long ago learned to live within his symptoms and find enjoyment in life. He and I both knew he was going to die. But before that time came he was content to enjoy what he could. 

This is not a perfect world. While I will do my level best to seek answers and try to make things better, there are just things that cannot be fixed and must be accepted. 

Now my discussions with patients have new dimensions to them.  We of course look to optimize their treatment and symptoms. But I also talk about things like priority setting, energy conservation, rebound fatigue, the role of low level exercise. I also am sure to spend time validating their limitations and symptoms. 

A key part of life for them is learning how to enjoy the life they have now in place of the life they had or wish they could reclaim.

This has been expressed by others in a variety of ways.

“God, give me grace to accept with serenity
the things that cannot be changed,
Courage to change the things
which should be changed,
and the Wisdom to distinguish
the one from the other.”[2]

“And whatever your labors and aspirations, in the noisy confusion of life, keep peace in your soul. With all its sham, drudgery and broken dreams, it is still a beautiful world. Be cheerful. Strive to be happy.”[3]

“It is what it is.”[4]

I have learned that we need to have the courage to live and enjoy life in spite of the circumstances that we are in. It is what is, and what there is – happens to be good.

[1] Side note: Hospice sometimes can help people achieve that goal by helping them to stay home and by less aggressive medical care – but that is not the point here.  The point is that he had learned the lesson far better than I have yet to learn it. 

[2] Attributed to Reinhold Niebuhr in the 1930s.

[3] Max Ehrman, 1927

[4] I attribute this to Aunt Joske, 2012. 🙂

Categories
Being human Reflections on Life, Being Human, and Medicine

Layers

Sometimes when I am lying in bed trying to go to sleep, I play a game in my mind. 

I imagine that I am not in the bed in which I am currently lying but am in one from my past. With my eyes closed in a quiet and dark room there are no cues to defy the times and places that I am playing out in my mind. It could be true. “I could be there and then,” I muse to myself.

I could be home in Decatur. This one I often think when there is a box fan on. The sound of the fan brings back hot summer nights in a time before air conditioning and the soothing sound of the box fan blowing the cool outside air into the house.   Once again, I am a shy little boy, the youngest of six children, living on a farm.

I could be in our apartment on Blueberry Bank, our first apartment after we were married. There we learned how to build a home and a life together. I so enjoyed being with Sarah and having things to do with her. In my mind I picture the position of the bed and the closet. Sarah hid once in the closet to scare me as I came out of the bathroom. We laughed and laughed as I jumped so high when she popped out that I fell over on the bed. I can imagine Sarah late night propped up in bed, working through our budget. We didn’t have much “wiggle room” on my Navy intern salary. I also learned that while I can fade at night and get tired, Sarah seems to pop awake with a new energy in the late evening.  She is a true night owl! Once again, I am a newlywed, discovering new and wonderful things each day.

I could be in the house we rented in Pensacola on Cayman Lane. There I was in flight surgery training and while it was only 6 months it was a wonderful time. The bedroom was large. It was so big that we were able to put my large slate top desk on my side of the room. On the other side of the bed we had a beautiful cradle for our baby daughter Dorothy. I can imagine giving her baths with Sarah in the master bathroom. As first-time parents it was a 2-person job of course. I think about trying to feed Dorothy green beans, propped in a car seat on top of the card table on our back patio. Once again, I am a young and new father learning all the wonderful things that means.

I could be in Frizzell Drive. This was our home in Virginia Beach, and we had so many adventures there. Our second daughter Margaret was born there. I picture how we had the bed arranged and the girls’ room next door. In my mind I walk through the house again thinking of different times. We had a lot of family visit, and we loved seeing the historical places when they came. I can think of the 30th birthday party I put on for Sarah complete with church friends and all our neighbors especially Doug and Bunny and Paul. Once again, I am a young physician, husband and father navigating all of what that means.

This whole process can go on and on.  Sometimes it is Everglade. There we started in the large upstairs bedroom with our girls downstairs. Later after JJ came along, we moved the 3 girls up into the large space and we moved into a smaller bedroom downstairs. In my mind I am first in the one bedroom and then second in the other. I can think of Sarah’s parents spending Sunday and Monday nights with us. I think of the movie times down in the basement covered in blankets cuddling with my daughters. Once again, I am back to a different identity, now in internal medicine practice and enjoying my young family and the support of other family members. 

Another fun one is to imagine I am in my bed on the aircraft carrier. My room was below the catapult. I would hear rumbling as the plane taxied to position. There would be a roar of engines and then the catapult would fire. When the catapult reached the end of its throw it would bang and the walls would shake. This would be followed by a clanging sound as the catapult banged back into its starting position.  I would laugh as I tried to fall asleep despite all of this. Once again, I am back in time again and in this identity I am a US Navy flight surgeon, young and trim and jaunting around an aircraft carrier.

The past few years have brought our transition from Trillium (and a lot of wonderful things to think about there) to our condo and then to Remington. People ask if we miss our old home. We tell them it is about the people not the place. That is mostly true.

But in my mind, there are a lot of treasured places. 

Understand, there have been hard times and hard things also. But as I try to go to sleep, I focus on the love and joys from each place.  Recall, my game is about trying to get to sleep so it would only make sense that I would focus my thoughts that way.

I heard a speaker on Kate Bowler’s podcast[1] (I wish I could remember who) talk about the complexity of our inner identity.  She said that as we go through life, we naturally change who we are and how we view ourselves. But she said that it is better to think of our identities as concentric circles. Like the many rings in an onion, the person or persons that we were before do not ever go away. They remain within us and each phase of life adds on new aspects and dimensions to who we are.

This means that even though my identity today is different than my identity as a child growing up in Decatur, the boy that I was then is not gone from my life. It is just buried deep inside of me. It is still a part of me. 

The high schooler or college student that I was is still me.

The young husband and then young father is still very much me and a part of me. 

The energetic man with passion and vision who had so many things he wanted to do and see is still me or at least inside of me.

This is important for a variety of reasons:

  1. It is okay to move on.  We cannot hold to the past or try to remain stuck in the past. Life changes and it is okay to change with it. Who you are today, and your life today is absolutely different from the other circles of your life that define who you are. But those prior identities are still a key part of what makes up who you are. Moving on does not betray the reality of the past. It makes today easier knowing you don’t have to sacrifice or give up who or what you were before. It is still there.
  2. It helps to understand that who you are is a complex combination of stages and stories and identities. You are multidimensional. You are not a simple character that might be depicted in a novel or movie. You’re complex with many years and many complex layers that make up who you are. How you respond today does not fit just your current identity but absolutely is due to all the complex and wonderful layers that make you up.
  3. Enjoy the layers. My game of pretending is not just silly nostalgia. It involves an appreciation and a thankfulness for all the phases of my life and the good things and times that I have been blessed with. It seems a shame to have lived something once and just have it gone. Once is not enough for the nice things in life. Recognizing that they are real and a part of who you are does not betray the present.  If I allow myself to remember and enjoy the past it frees me to enjoy the now. Yes, there were the “good old days” but there is also the good that is now. I don’t have to live in the past. I can relive it in my memory and recognize it within my person. In that I can go out and live today fully. 

I hope that I am explaining this well enough that you can see the power in it.

There are times, places, events and people that have gone or changed. It is possible to get stuck grieving the fact that they are gone. But they are not really gone. Those things were real. They were valuable. Just because they are gone or changed cannot take that away. We do not have to sacrifice those memories to move on with the future. Those things are a part of me and who I am today. Today has new times, places, events and people. Knowing that I am not losing the past makes me free to open my eyes and enjoy today. 

You might think my game is silly. That is fine. But I can tell you that you absolutely are a complex and wonderful person that is made up of all your identities and the phases of your life. Today is a grand opportunity to expand further. 

What will today add to who you are?

[1] https://katebowler.com/podcasts/