Update

When I first began this blog I had hoped for a full recovery; my neurosurgeon told me many times that he expected a full recovery, “You’ll be better than before,” he would tell me at my appointments. I would cling to his expectations so much so that even over two years post-surgery, and still hampered, I thought I might still recuperate to my baseline: in fact, I would often tell friends, “My neurosurgeon told me that he expects a full recovery.” Most often I would get a reaction of first disbelief, then of acceptance, as if they are being told that Jupiter is over 350 million miles from Earth. The first thought is no that can’t be right, followed by well, if the experts say so, it must be true. Who are we to question a neurosurgeon or an astrophysicist?

Last year I had the pleasure of meeting Brian and his lovely wife Jess. I was introduced to them through my physical therapist, Cheris. When Cheris told me about them, the parallels in our stories astounded me: Like me, Brian underwent an extensive brain surgery, and their child was born while still in the hospital while he was still recovering from the surgery. I would occasionally run into Jess and Brian at the YMCA with both of us trying to rehabilitate. I remember on one of these occasions the topic of recovery came up. He was told by his neurosurgeon to expect this or that x number of days after the surgery. I told him, “Brian, they can give you figures and numbers, but the truth is, we are both on unchartered territory and gauging recovery is guesswork at best.” I realized later how cynical this came across; I sent an e-mail to Brian and Jess expounding on my statement—I explained that I by no means meant to diminish their hopes of recovery; on the contrary, I meant to raise their spirits—I have been told by numerous clinicians that most to all of my recovery will take place in the first year, but I still experience small gains to this day, over 25 months after the surgery. My point was that even though medicine is rooted in science, and we know the mechanism of a heart attack to a molecular level, everyone is different and we cannot say for certain how someone might recover from this insult. In medicine, we are expected to give our predictions: predictions of a disease process, prediction of a cause of ailment, even predictions surrounding life span and even though these predictions are scientific in nature, whether it be rooted in research studies or clinical experience, they are still predictions. And we ought to accept them as so. One of my supervising physicians once poignantly told me, “Chris, when someone is on a medication, we can predict what the medication will do in their body. When someone’s on five or ten medications, then we can kind of predict how those medications will interact with each other and the host. When they’re on fifteen or twenty medications, then we have no idea what’s going to happen.”   I don’t tell you this to tell you to stay away from medications; I simply feel it highlights the idea even though medicine is part science it is also exploration of the unknown, and I think that is sometimes forgotten.

Uncharted territory
Uncharted territory

What does this have to do with my condition? Even though at first I had hoped for a full recovery, meaning one day you could see me jogging down the street while on the phone (speaking in a normal voice) I now realize that my condition is permanent. But like my first statement to Brian and Jess, I do not want you to misconstrue my words to mean I surrender—on the contrary I hope to convey a message of hope. I have now come to the realization that my condition will stay as it is. Even though I do experience small gains every day and I do still hope to improve and progress, I have come to terms with the idea of never walking and talking normally again. I realize that this tumor has left me with deficits, deficits that make most seemingly routine activities difficult. But even though this tumor has stripped me of many of my abilities, without it I would not have discovered my love of writing, the importance of my family, and the beauty of medicine. Ironically, while this tumor has taken much away, it has also given me so much.

I am incredibly lucky to have my older sister, Amy Aminlari, to edit each and every one of my pieces. Not only is she an Emergency Department physician and mother of three, she is also a brilliant writer, graduating from Yale University with a degree in Political Sciences. Most importantly to me, she is one of my best friends, whose love and encouragement has allowed me to get through this. Since the beginning of this ordeal, she has constantly been telling me to expect a full recovery. When I sent her this piece to read over, she told me that while the piece was grammatically sound, that “I hope you haven’t given up hope that you can still improve. This makes me sad.” I e-mailed her back and told her that my aim was not to paint a picture of “giving up,” but that while I have accepted my limitations, I will work to not hide or disguise my shortcomings, but to show off my strengths. Even though this tumor accentuates these shortcomings (unable to walk or talk right), it has also allowed me to explore and highlight what I can do. Yes, five years from now, I have accepted that I will still have disabilities, but five years from now I also hope to have developed what I can do.

 

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