By Dr. Annie Brewster
What you never want to hear from the radiologist: “I wouldn’t mistake it for a normal brain.”
Yet this is what I recently heard from my radiologist friend who kindly took a look at an MRI of my brain. Let me repeat: it was my abnormal brain under discussion here, and I'll tell you, his assessment was tough to hear.
The state of my brain isn’t exactly news to me. I have had Multiple Sclerosis since 2001, and I have frequent MRIs. Moreover, as a physician at the hospital where I get my treatment, I have the dubious privilege of having complete and immediate access to my medical chart. As such, I often see the MRI images and read the reports before my neurologist does, and fortunately or unfortunately, I understand “medicalese.” (And I have radiologist friends.)
Every time I get an MRI, I devour these reports as soon as they become available on the computer, scanning optimistically for words like “stable.” I even hold onto the absurdly magical hope that old lesions will have disappeared, and that this whole diagnosis of MS has been a big mistake. Instead, I find mention of new “hyperintense foci of white matter signal abnormality” and “enhancing” lesions, “consistent with actively demyelinating MS plaques.” I fixate on words like “volume loss” and “atrophy” and in one preliminary report generated by a resident, I think I saw the word “diminutive.” Did I imagine this?
Despite the sting of these words, I am able to remain somewhat detached. As a doctor, I spend my days looking at radiology images and reading such reports.
Often — due to the formal and impersonal language that is used — it's hard to remember that the body part being referred to is actually part of a human being. It is even harder to remember that it is part of me!
“I wouldn’t mistake it for a normal brain” penetrates deeper. I understand. My brain is under attack, and is irreparably damaged.
My first response is to mount a defense. I feel the need to tell you that my brain is still a good brain. It just has a few small blemishes. It still works! I recently passed the required ten year recertification medical boards (apparently I will never escape bubble tests), and I feel smarter than ever. I am the mother of four and the primary logistical organizer in my
household, and my (short term) memory is at least ten times better than my husband’s (no offense, honey). Furthermore, research has clearly shown that MRI findings do not necessarily correlate with clinical symptoms in Multiple Sclerosis. So there is no cause for alarm.
Also, the research is promising. Exhibit A is this massive MS conference currently underway in Boston with many great minds focusing their attention on new approaches, such as potential remyelinating therapies, to tackle the disease. (MS damages the myelin, the sheath around nerve cells, and remyelination would restore it.)
My neurologist, Eric Klawiter, at Massachusetts General Hospital, writes me this:
As a research community, we have gained a great deal of knowledge on the mechanism of remyelination and how that process can go awry in MS. There are several candidate compounds demonstrated to promote the body's ability to differentiate precursor cells into cells that lay down new myelin (oligodendrocytes). It is yet to be established whether these candidate therapies will work best to promote immediate recovery from relapses or whether they will also be effective in the setting of remote demyelination.
Of course, any potential new therapies are years or more away and don't do much for me right now.
So, underneath my bravado, there is vulnerability.
My brain is what really makes me “me”, after all. It is terrifying to think of my own diseased immune system cannibalistically attacking my own nerve cells — my brain — in a progressive onslaught. What will happen to me? How will I change? Will I be diminished?
Internal panic flares intermittently. What does it mean when I run into an acquaintance and fellow parent at my child’s school who I have known for years and suddenly can’t come up with her name? Or when I walk into the kitchen with a clear mission in mind and then arrive with no recollection of why I have come? I open the fridge and stare blankly at the shelves — milk, orange juice, strawberries, cold water. Was my goal food or drink? I have no idea. I shut the door and walk away empty handed, shaking my head in an effort to “refresh” the contents of my mind. Is this simply normal aging, part of being 46 years old, or are these lapses due to MS-induced damage?
Thinking like this makes me want to run away from myself, or to cover my ears and sing loudly so I can’t hear my thoughts. Stop, brain!
I have to step back and regain control. How is this information useful to me? In this day and age of DNA sequencing and whole body imaging, we have to ask ourselves this question.
First, my brain images tell a clear story. My disease is progressive. While on the outside I feel great and full of energy, these pictures show me that there is unrest on the inside. This peek under the covers motivates me to take better care of myself — to eat well,exercise and take medication (which I recently restarted after a year's hiatus, but that’s another story).
Second, my brain reminds me that life is transient, and to try to live in the present moment ("try" being the operative word here.) Yes, my brain is diseased and is accumulating damage faster than healthy brains, but we are all changing, constantly.
Time can’t be slowed. Our hair grays. Our skin wrinkles and sags. We can no longer run as fast or as far as we once could. We can’t read the menu in the restaurant without magnifiers (I still can, but am teetering on the edge). This happens so gradually that we often don’t even notice that change is occurring. In my case, I get a very concrete yearly reminder — in the form of an image of my ever-changing brain. And the message is this: life is impermanent. I take this as a gift.
Lastly, my brain has taught me about self-acceptance. Recently, I spent some time staring at the cauliflower image of my brain, determined to embrace it as my own, blemishes and all. While I know this sounds crazy, it was a healing exercise. Since my diagnosis, I have spent so much time fighting against my illness, feeling ashamed of it, and denying its existence. Now, I am trying to love and accept my not-normal brain. It’s part of me, like the new wrinkle-that-looks-like-a-scar between my eyebrows.
Self-acceptance is a forever shifting process. While I am working on embracing my brain as it is, I am not giving up on the hope that medical research will one day make it possible not only to slow the progression of my disease but also to repair the damage that has already been done. Clinical trials are underway to investigate stem cell and antibody based therapies with the potential for remyelinating nerve fibers.
For now, I'm thinking about taking up Sudoku.
Dr. Annie Brewster, author and audio producer, is a Boston internist and founder of Health Story Collaborative, a non-profit organization dedicated to harnessing the healing power of stories. You can hear and read more of her stories here and here, as part of our Listening To Patients series.