My next patient was supposed to be a follow up after hospitalization, but she was still in the hospital. This meant that I had an unexpected hole in my clinic schedule. I decided to go to the hospital cafeteria and get a coffee. As I did so and was walking back to the office with the coffee cup in my hand my thoughts went back to, “coffee break.”
We worked on my grandparent’s farm as we grew up. Working out in the fields together with my grandfather, father and brothers, my grandmother would come to bring us “coffee break.” Mid-morning coffee break would be with hot water, freeze dried coffee, and Styrofoam cups along with some type of cookie or roll. In the mid afternoon it would be Kool-Aid and perhaps slices of cheese and crackers. Often the cheese would have warmed on the trip to the field. I remember the cheese as being soft. It always seemed more appealing that way.
I loved coffee break. It broke up the day and reduced the monotony of shaking cherries or picking peaches. I think back fondly to seeing my grandmother arrive with her little dog Blackie and whatever treat she had prepared for us.
It is easy to get sentimental. I first started writing this blog a couple years ago when we had the sudden and unexpected loss of our Aunt Mary. That brought more change and with that came the reminder that life just keeps marching on whether I want it to or not.
I wish I could rush back even if just for a moment. There is a movie where the main character can relive past moments and my heart longs to be back in the orchard with my grandfather, father and brothers. Life was simpler then (at least for me). While I may not have liked all the times working out in the orchards (it was indeed “work” and it could be hot or cold, and tiring and monotonous) I still would give a lot just to go back for an hour and relive it all.
I would love to hear my grandfather and father talk as they climbed up and down ladders picking peaches. My grandfather always seemed to have some fascinating story or another from his various county commission or hospital board activities. He was a storyteller and he loved to tell the stories of current or past events. He and my dad both had wonderful ways of laughing. My grandmother was a small woman, but it never stopped her from doing whatever needed to be done. Everyone would marvel at how as a small woman she would climb up inside and drive the big farm trucks. She had her dog with her wherever she went. At their home, I would enjoy going and sitting by their dog and stroking his fur. If I went to market with her, she too would tell stories as we drove along together.
I wish I could go back.
But I cannot.
Recently a coworker wisely reminded me that life is change. It doesn’t matter whether I like it or want it or not, life continues to move forward, and things continue to change. We take the victories and losses, the joys and sorrows and live through them and then keep moving forward.
It is like riding on a train or in a car and looking out the window. Everything keeps moving on whether I want it to or not. Maybe it is like Lucy and Ethel at the chocolate factory. The chocolates (or events of life) keep coming and it seems that ready or not they come faster and faster and faster.
What am I to do?
It is only natural that there are times when I want the world to stop and go backwards. I wish I could go back. I wish I could relive things. I wish I could enjoy simpler times from my past.
Life is change. Or as JFK put it, “Change is the law of life. And those who look only to the past or present are certain to miss the future.”[1]
I need to look forward. Today is going to be a memory tomorrow. I can and should face, experience and enjoy what today brings with an eye on tomorrow.
But maybe, just for a moment, it is okay to sip my coffee and enjoy some crackers with sun warmed cheese and think of those I have loved, and times gone by.
[1] Address in the Assembly Hall at the Paulskirche in Frankfurt (266),” June 25, 1963, Public Papers of the Presidents: John F. Kennedy, 1963.
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:
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.
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:
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.
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]
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.
