There is something that only really my family knows about me.
I was born without my right pectoralis major muscle.
This is one of the muscles in the upper chest and front of the shoulder that helps you to move your arm. The doctors told my parents that I would have things I would not be able to do. They didn’t think I would be able to throw a ball. My parents opted to treat me like everyone else. I had a happy childhood. I knew that I was missing the muscle, but I still played. I may not have had a strong throwing arm, but I could throw a ball. To be honest I held back a bit on sports knowing that to try to be a pitcher or a quarterback was not likely a good thing for me. I still was able to do a lot of what I wanted to do.
I applied for the Navy Health Professions Scholarship Program in my senior year of college. This program would pay for my medical school tuition and give me money to live on during medical school. In return, I would serve 5 years as a Navy physician afterwards. It was a great deal and a way to avoid going into the massive debt that a lot of medical students accumulate.
In the fall of my senior year of college, I filled out the applications and went through the required interviews. I drove to Detroit and spent a day at the MEPS (Military Entrance Processing Station). This was a day of walking around in my underwear with a group of other men getting their physical examinations hoping for entrance to the military. In spite of my missing muscle, I passed the physical. I got accepted into the program. A few weeks later I raised my hand in front of a picture of Ronald Reagan and an American Flag and swore to defend the constitution of the United States. Suddenly I was a commissioned officer in the United States Navy.
Pushups.
I was unable to do a pushup. The missing pectoralis muscle is key to be able to push your arm forward. I had never been able to do a pushup. The Navy physical fitness standards required me to do pushups. The next year I was going to my 6-week officer training course. There I would be required to pass the physical readiness test (PRT). I anxiously looked up the requirements. In order to pass I needed to: touch my toes (✔️), run a mile and a half in under 10.5 minutes (✔️), do 60 sit ups (✔️), and do 26 pushups (🚫).
Twenty-six pushups. I couldn’t do one. But they had already accepted me. I guess I would figure it out as I went along.
I went through my first year of medical school on the scholarship program (’87-’88). They paid my tuition and gave me $650/month to live on. I registered for my required officer training course for the next summer. In the fall and winter of 87/88, I decided I had better start trying to work out. I had done some basic weight machines before but had never worked to be able to do a pushup.
My friends, John and Erlund, were an immense help. Erlund had a full set of weights in his apartment. He invited me to come and work out with him. As I did, he encouraged and pushed me. I started lifting more and more weights. Leaving his place after a workout I would feel like I was barely able to drive my home. My arms would feel like jello after the workout he put me through. Eventually I was able to do a pushup. Later I could do a couple of pushups. They were not pretty. They were mostly a pushup that favored my stronger left arm (the arm that actually had the muscles I needed to be able to do a pushup). As time went on I could do more and more. I still couldn’t do 26.
In May 1988 I went to my officer training. I learned how to march, wear a uniform, salute, and run a floor buffer. I also continued to exercise. Every morning I worked to do pushups.
By the end of the 6 weeks, I did it. I passed. I did twenty-six pushups. They weren’t pretty. But I did them. And interestingly, once I did, I passed every semiannual physical readiness test for the duration of my time in the Navy.
Success.
That is a great disability narrative. It makes for a nice story. The narrative is of a challenge and the ability to overcome through the help of friends, persistence and hard work. This sort of narrative makes for great inspiring posters.
Picture a sheer rock face with the person with powder on their hands, 2/3 of the way up straining, sweat beading on their tense muscles. The caption reads, “Never, ever, ever give up. Success is just a little bit further up!”
It is true. I learned that it is possible to push yourself and overcome limitations. Sometimes we fail because we believe that we are going to fail. If we try to push through we often can find success on the other side of the barrier or limitation. In this I learned some key skills on how to overcome.
Now I am on a different side of disability. It is a different story. It requires some different skills that are hard to learn.
I have often wondered when I see my aging patients what it is like to be living during a subtraction phase of life. There seems to be a time of life when things start to be taken away from them. This can include strength, mobility, and even cognition (the ability to think).
This week I saw a patient who told me that he is not as smart after his cardiac surgeries than he was before. “I used to be really smart. I am not anymore.” I started to talk to him about potentially going through speech (cognitive) therapy. He stopped me, “It is ok, doc. I am retired. I get by just fine. I don’t have to be so smart.”
I saw another patient who was in a wheelchair. At home she uses a walker. She remembered being fit, vigorous, and active. That is gone now. I don’t see that she is ever going to regain that lost strength. She is having to learn what it means to live and find enjoyment in a life in which much of who she was before has been permanently taken from her.
For me it is more subtle. I can hide it. I can look normal. But in the room with each of those patients I felt very lightheaded, tired and achy. My symptoms are better now that I am on a higher dose of hydrocortisone. But I remain not normal. At the end of that day, I was exhausted. It was not a hard day. It was a normal day. But yet there I was struggling to type my last patient’s note. At the same time, I had an add on end of day virtual meeting. I dialed in but was thankful that I could leave my camera turned off. I could hide and mostly listen. I rallied my energy and chimed in when appropriate. I pretended to not be so tired. I got through the day.
It makes me understand my “subtraction phase of life” patients better now.
There are a couple of narratives that go along with disability. One is like my 1st story. It is a story of victory and overcoming. These are the stories that we like to read. Another’s disability and then their overcoming can create nice and inspiring stories for us. It makes for great posters.
But there is a second narrative.
The other narrative is not one that people like so much. It is not as pretty. It is a narrative about having things taken away from you. You feel robbed. You do not have the ability to overcome.
Sometimes – trying harder doesn’t help. Sometimes trying harder hurts.
In Norman Jester’s book, “The Phantom Tollbooth”[1] the main character Milo travels to all sorts of mysterious lands where things are not what you expect. One place he goes is a place where they serve subtraction soup. In that land you do not eat to get full, you eat to get hungry. If you do nothing you eventually will start to feel full. Once you feel full, you eat the subtraction soup to feel less full. “I am so full! I better eat some subtraction soup.”
Milo arrives to this land very hungry. He gladly takes a bowl of soup and eats heartily. Unfortunately, the more he eats, the hungrier he becomes. At the cost of extreme hunger pains, he learns that he must do nothing. “Don’t just do something, stand there,” is the twist on the common expression.
Sometimes great effort is like subtraction soup. Sometimes trying harder and harder does not solve the problem. It only makes it worse.
How do you deal with a subtraction phase of life? How do you deal with loss or when things are taken away from you? How do you live within the narrative where you cannot by force of will or effort overcome your disability or problems?
I see this process play out so frequently with my patients. Over time I see them learning the lessons. Like Milo, the skills that are needed in that phase of life are often very different from what has brought them success earlier in their lives.
The first skill is being able to get an understanding of the new normal.
In my mind I have the same abilities and stamina as before. Symptoms always wax and wane. Having good days and bad days is the norm for everyone. On a good day, I imagine that I am back to my normal (and younger) self. When I have a bad day, my hopes are destroyed. The hardest thing is to get a realistic understanding of what I am or am not able to do.
Getting to an honest assessment of oneself is often very hard. I think many of us tend to fluctuate between a sort of “Walter Mitty” superman view and then a self-denigrating “not good for anything” view of ourselves. The truth of course is always more measured. Within me there are great things, average things and not so good things. Within my “new normal” the same is true. There is a lot I can do. In my bad days I get frustrated and childishly think that I can’t do much of anything. On my good days I want to slip back into being a full force young and driven man. The real truth: my life isn’t bad. I can do a lot. I can’t do everything. Getting an honest understanding is the first and key step.
The second skill is learning to accept reality and figuring out how to live within it.
This might involve grieving in order to accept the loss. In other words, the classic Kübler-Ross stages of shock, anger, bargaining, denial and then finally acceptance.[2] The point is that with every type of loss comes a process where we need to work through it and come to a point of acceptance.
Some patients are amazing at how they can do this. Others really struggle with it. The harder they try to become what they were before the worse they get. We are trained to tell patients in chronic pain that their focus should not be on trying to be completely pain free. Instead, they should focus on trying to regain function in their lives in spite their pain. The experts tell us that in doing this their pain often gets better. But if they focus on their pain, especially on trying to be completely free of pain, it often gets worse.
Sometimes they eat the subtraction soup. The harder and harder they try to make themselves better, the worse they get. It is a not an easy lesson for them. It is often something that you can’t tell them. Over time they have to learn to accept their situation and stop trying so hard. They learn to shift their focus onto trying to make the best of where life has put them.
I saw another patient who has significant ongoing symptoms[3]. He told me he has 2 good days, 2 bad days (= stuck in bed) and 3 in between days each week. He has amazingly learned how to live within this illness and find happiness in his life. It doesn’t mean that he doesn’t have limitations or severe symptoms. It doesn’t mean that he has given up on seeking better treatments for his condition. It just means that he has worked through the process of understanding and accepting his situation. Having done that, he can enjoy the good days and figure out how to cope with the bad.
The third skill is having the strength and insight to set up a structure for your life around the disability or limitation.
This means finding a way to have a sustainable life and one that makes sense within what you are able to do. This too is a hard task. It means saying, “no” to things. It means setting priorities. I tell my patients about energy conservation. I tell them to intentionally choose what they want to do with their energy. If they can’t do everything, what do they want to do? I often joke that young men exist to do yard work so they don’t have to.
They can instead go out to breakfast with friends. Or they can be there to go shopping with their spouse.
I continue to struggle with this. If I can’t do everything I did before, how do I structure my life now? It is a lot easier to say “yes” than it is to prioritize and selectively say “yes” and “no.”
Those reading this who know me may want to know – what is my current reality?
In early 2020 I worked to wean off of my supplemental steroids. Starting in May/June 2020, I really have struggled with adrenal insufficiency. The symptoms are a combination of fatigue, diffuse muscle aches, lightheadedness, disturbed sleep, and a variety of other symptoms. If I try to just push through the symptoms, I get worse. Instead, like Milo, I found that I had entered a strange new land in which the rules were different. Attempts to push through end up being subtraction soup and make me worse. Over time, with the help of increased hydrocortisone doses, a carefully regulated schedule, and some structured exercise, I have improved some.
Getting COVID was hard. Fortunately, I made it through that. I was absolutely exhausted. I am back now to my usual adrenal insufficiency symptoms.
Milo eats and then eats more of the subtraction soup. All it does is make him hungrier. Eventually he learns the secret is not to eat, but to not eat. Milo has to learn to do something that is not easy. It is to do nothing. It is to accept his circumstances and wait.
I am not good at that. I am impressed by my patients and friends who can do it. They can somehow find peace and joy in spite of the limitations that have been put on them. The apostle Paul said that is the secret:[4] Learning to be content in the circumstances in which you are.
Maybe that is worthy of a big poster on our walls? I can see it now. Big sheer rock face with ropes and gear and people with powder on their hands struggling up the wall. Seated at the bottom on a folding camp chair is another person. This is a person who can’t climb the wall to the top. But this person is quite happily camping on the bottom. Maybe they are even roasting a marshmallow or two. “Be content with such things as you have,[5]” is written in big print along the bottom.
So how am I?
A little confused still thank you. Trying to figure out how I am and what my limitations are and what I can do to make them better. When do I push and when do I rest? In the process I am trying to learn to accept, be content and enjoy and appreciate my life.
Care to join me for a toasted marshmallow and a camp chair?
[1] The Phantom Tollbooth, by Norman Jester, Random House, 1961.
[2] On Death and Dying by Elisabeth Kübler-Ross, Scribner, 1997.
[3] For patient privacy I am intentionally vague about the condition.
[4] Philippians 4:11-13
[5] “Let your conversation be without covetousness; and be content with such things as ye have: for he hath said, I will never leave thee, nor forsake thee.” Heb 13:5, KJV
