Last week I wrote a piece that centered around a TED talk, and in watching that talk I came across another talk that struck a chord with me. (I swear I don’t spend all day listening to TED talks). This was a presentation by a 17 year old by the name of Sam Berns. Sam suffers from a condition called Progeria, or in pop culture sometimes inaccurately referred to as the ‘Benjamin Button disease’. In the beginning of his talk, he gives a great piece of advice that I given much thought to: he says “be ok with what you ultimately can’t do because there is so much you can do.” Here is a teenager stricken with a debilitating, fatal disease, yet he is able to see through the many activities he cannot perform and focuses on what he able to do.
After thinking about it, his situation is similar to mine in many ways. For both of us there are countless activities we can’t perform, but many tasks we can do. For me, my walking and talking difficulties may preclude me from a number of endeavors but if I spent my time thinking of all I couldn’t do, instead of what I can do I might become overwhelmed by my ‘limitations’. Yes, of course there are times when I see someone jogging or playing basketball, or even singing a well-known song, and get jealous—I’ll admit that the thought I wish I could do that or I’ll never be able to do that comes across my mind—I am human and think those thoughts are inevitable. It would be unreasonable to aim to never think of your limitations and their implications. What is reasonable is to try and quell the amount of time spent dwelling on your limitations to focus more on what you can do. In my case, even though this tumor may mean I won’t become a marathon runner, I’m lucky in that I still have the use of my mind and can read, write, and manage patients. When I thought about this more, I realized that Sam’s advice is not only relevant to persons with disabilities, but to everyone. We all have our own limitations, from claustrophobia to a fear of heights to heart disease. We cannot control these,;we can take medications and have interventions in an attempt to lessen their effects, but their imprint will be forever etched in us. But what we can control is how much of our minds and time we spend thinking about these ‘limitations’. My aim, like Sam said, is to minimize the time spent (wasted) on what I can’t do, and maximize my efforts to what I can do. I hope you do the same, join me in this undertaking.
During this ordeal I experienced moments of feeling sorry for myself—I would think, why me? This is hard. I then listened to a ‘TED talk’ by someone named Ash Beckham. During the talk she says something very interesting: “Hard is not relative, hard is hard. Who can tell me that explaining to someone you’ve just declared bankruptcy is harder than telling someone you love you just cheated on them?” I have found myself falling into the same trap, ranking the ‘hardness’ of my ordeal next to others. But Ash has a point, why somehow try to quantify the ‘hardness’ of this ordeal? What would it accomplish? Of course, this mentality would not apply to extremes—going through a divorce is obviously more difficult than dealing with a hangnail. But beyond this, the idea is that we would be wasting our time if we were constantly trying to decipher how hard our situation is.
During my surgery rotation, the surgeon that led the rotation said something quite poignant. He said, “People don’t care where or what you’ve been through, they only care where you’re going.” At the time, I didn’t put much thought into the comment, brushing it off as a sign of his bitterness. But in the years to follow, I found him to be right. It’s not that the ‘people’ he refers to are short sighted or wrong, in fact they highlight a very important point: where or what you’ve been through is only significant if it alters how you are today or tomorrow. Thus trying to somehow quantify or rank the ‘hardness’ of this is a fruitless endeavor. The only way this ordeal becomes significant is if it changes the trajectory of where I am going.
Only time will tell what comes of this, how my life is affected. Right now it would be easy to point out the physical limitations that this tumor has created, or even that this tumor has uncovered a hidden love of mine, writing. But 5-6 years from now when the effects of the tumor are (hopefully) less than now, what will its true effects be? That I don’t know. What I do know is that if I spend even one second feeling sorry for myself or trying to somehow rank the ‘hardness’ of my condition, it would be time wasted. Hard is hard. Do yourself a favor and don’t waste your precious time trying to figure out how hard it actually is.
I initially sat down to write this post in November of last year but could not finish it. Reliving all the clinical encounters and clinician visits was simply too difficult for me. Mentally and emotionally, these visits evoke painful emotions. But my experience now in the clinic with patients has finally allowed me to appreciate being ‘on the other side.’ My approach to the countless physician visits was to agree with their recommendations at the time and ponder it later. If his/her management did not make logical sense to me I would go against their medical advice. This comes with a caveat: if the physician’s specialty was one I knew little about, I would always concede to their knowledge.
The patient-physician relationship is one like no other. The exchange of information has no limits; patients divulge the most intimate details of their health: from thoughts of suicide to sexual dysfunction, there isn’t anything beyond the physician’s scope. This information is given in hopes that the physician’s knowledge and expertise will fix the problem. Consequently, the patient role is an incredibly vulnerable one.
—- Why? —-
My approach of agreeing with the clinician and speculating later relied on my many years of medical training. But what does someone do if they do not have the medical training I possess? Remember my approach came with a caveat: I would always accept the management if I had decided that his/her decision was rooted in knowledge I did not have. The problem is that most people do not attend medical school, thus the medical decisions are always out of the scope of the patient, and if this person took my approach then he/she would almost blindly accept any decision. You’re always taught as a patient to ask “why” of your physician. Sometimes the answer is “because there was a study completed in Sweden that told me to do so.” What should come next? Should one accept the decision or scrutinize it? Being on the ‘other side of the coin’ has allowed me to see that while most decisions made by your clinician is based on years of reading and medical knowledge, all of their decisions are rooted in logic that each of us possesses (for example if a diabetic who only takes pills for their condition is directed by their physician to start insulin after elevated home readings or a high HbA1c; while the patient may not possess the knowledge to know that Glargine insulin lasts longer than NPH, the logic behind this decision is something we all possess. Ask, why now? Why do you want to start insulin now? Even though the knowledge of diabetes management is beyond the scope of most patients, the logic that the diabetes is progressing and so should the medications is a flow of thinking that every patient possesses).
—- Compassion —-
The other trait we are taught as clinicians and expect as patients is compassion. How would you define compassion? To me compassion is displayed through empathy. The best way to show compassion is to draw from a similar experience you’ve had in the past. This poses an issue in my situation in that very few people have been through a situation similar to mine. Thus how can I expect true compassion? It is crucial then that the clinician identifies the emotions that the situation evokes, and draws from a situation that he/she was involved in, in order truly to relate to that emotion. I’ve had visits where the clinician did this showing compassion, and also visits where they felt sorry for me (sympathy, see the earlier post). I could sense the difference, and I suspect you would be able to as well.
 HbA1c = hemoglobin A1c, the quantity of hemoglobin (your blood) that is taken up with sugar. It’s a way to diagnose and follow diabetes.