When I enrolled in a study comparing the efficacy of the Wahls Diet to the Swank Diet in reducing fatigue in MS patients, I agreed to the following:
Item 1: I would hold off on any food not on my randomly assigned diet, while documenting every meal and morsel that passed through my lips. (And every bowel movement that passed elsewhere. Note how I choose to modestly tuck this admission into parenthesis, as though to hide it.)
Item 2: I would hold off on making any changes beyond the diet: no new exercise routines, no new medications, no new supplements. (This element worried me from the start. To have multiple sclerosis is to be on constant alert as to what works, and what hurts, and to adjust accordingly.)
Item 3: I would hold off on writing about the study until after my participation was complete. (I was told: “You can still take notes.” This riled me. How dare anyone presume I would grant them the power to prevent my taking notes? Still, I’ve held off on blogging about the study. Until now.)
As the study continued, I’ve been ceaselessly repeating my end date to myself like a convict scratching out roman numerals on a cell wall: November 14, November 14, X1 X1V.
It’s not that I’ve been worried about my ability to stick with an MS diet. I have all the motivation imaginable: I have zero desire to feed the disease that has riddled me with suffering.
At this very moment, I am sitting in a lovely urban café with my gorgeous husband, pristine sunlight streaming through the floor to ceiling windows, mellow trumpet streaming through overheard snippets of conversation about…a study on epilepsy (disease is ever present in our culture.) My husband’s almond croissant looks esthetically appealing, but it does not spark my appetite. It might as well be a croissant in an oil painting.
It occurs to me that growing up poor may have primed my willpower. I have always divided the temptations of this world into that which I can afford, and that which I cannot. As I have always been able to afford library books, hugs, conversation, trees, and sky, I have never felt privation while all sorts of shiny things— luxury cars, diamonds—sparkle out of focus as they pass me by. To be on an MS diet is to acknowledge that I cannot afford an almond croissant. But as it happens, I haven’t felt privation. I have a neighborhood grocery store around the corner full of fresh, healthy food—and a husband who is an amazing cook, capable of spinning delicious meals out of any assortment of options. (I’m a capable cook, myself. Just not a brilliant one, like he is.) Holding off food outside the diet has not been difficult; it’s been like holding off on invitations to disease. Easy scheamsy.
So much for Item 1.
I had thought, (too optimistically, in retrospect) that because I have an iron will, because I would follow any MS diet I was given to the letter, I would be rewarded with a respite from disease. This has not been the case. I’m not saying the sacrifices I’ve made in my diet have not been necessary—I believe they are. I am saying they have not been sufficient. The fact is, my diet before the study wasn’t all that different. Or at any rate, not different enough for me to experience any last life changes.
While an MRI I got from the NIH this spring did not reveal any new lesions…I was informed by voicemail that the game has changed. I am no longer being categorized as relapsing/remitting, but as secondary progressive. The damage in this phase of the disease process is more subtle that any lesion glowing on an MRI. But I can feel it.
Adhering to Item 2—holding off on changes to exercise, medication, and supplements—has meant continuing to allow my condition to further degenerate. And yet…I held off on any changes, as agreed, for weeks and weeks and weeks. I continued to make my healthy food choices. I filled in the bubbles in my diet record. I swallowed my assigned supplements. And I ceaselessly reminded myself I would be free to try something new on November 14, November 14, X1 1V.
All the while, there has been this one supplement I’ve been drawn to in particular: Biotin. There had been a promising study in France, which showed 300MG of Biotin daily had reversed symptoms in people with progressive forms of MS. Since starting the diet study, I’d joined an online group of people following the diet to which I was assigned. Many of them had started taking 300MG Biotin, and their first-hand reports of symptom reversal kept showing up on my feed. In my mind, Biotin was becoming something I could not afford—to be without. I mentioned this at my neurology appointment last week, and was in shock when the vivacious newcomer to my healthcare team handed me a prescription. Hadn’t she heard I couldn’t take a new medication until November? Maybe she thought—maybe I should think—I could not afford to wait.
In retrospect, my continued indecision seems almost comical. I talked to my husband. I talked to my mother. I texted a sister. I felt it would be wrong to drop out of the study. The investigators had invested so much. I’d invested so much. Over the years, participating in clinical trials has become my identity. Or one of my identities. I was Ms. Lab Rat, wasn’t I? Who was Ms. Lab Rat to jump out of the maze?
But losing my alter-ego was the least of my concerns—my health was at stake. My health had to take priority. Which was why I’d become a Lab Rat in the first place.
One of my interlocutors suggested that I just take the 300MG Biotin, and not report it. That would be easy enough. I’d learned, through the Biotin grapevine, that if one held off ten days before bloodwork, the supplement would not be detected. This option did not appeal to me. What was the point of doing any study if it didn’t give real people with real MS real answers? If I didn’t report honestly, I’d be negating all the work I had done so far. The study would be worth nothing.
A friend of mine tells me that, when faced with a difficult decision, she asks herself, What Would Lisa Do?
I tried to imagine myself as the sage friend she sees in me. I asked myself, if our situations were reversed, what council I would give her? What Would Lisa Do?
Lisa wouldn’t hesitate to tell her to drop the study and do whatever she thought she needed to do to take care of herself.
But did I drop the study? Not so fast. I wondered if there was maybe a way I could stay in the study and take care of myself. One of the advertised perks of being in the study is that you have access to a dietician. I emailed the dietition, asking for a pep talk. “This diet is not working for me.”
It wasn’t just the diet that wasn’t working. Zinbryta, the drug that radically improved my quality of life for over ten years, now seemed to be responsible for my having a decreased ability to heal. (I have had the same skinned knee for four and a half months. It’s kind of eerie.)
I wrote, “I need to get more assertive in my treatment, and just can’t wait until November 11 … To stay in place is to decline, and I just can’t continue to harm myself in this way.”
Since the dietician has had access to my food records, I was hoping she might be able to detect some tactical error I’d been making, and would write back with a suggestion of some simple dietary change I could make that would change everything. Something like: replace soymilk with cashew milk and you will live healthily ever after.
That didn’t happen.
So when the dietician called on Friday, I announced, “It’s with a heavy heart that I have to give up this study. I’ve been given a prescription for high dose Biotin, and I’ve decided it wouldn’t be right to delay getting it filled.”
Unbeknownst to me, my announcement contained a magic word.
If I’d been paying more attention to our agreement, I would have remembered that the study does allows one to make modifications to medications or supplements…prescribed by a physician.
I could, in fact, take my Biotin and continue on the study diet, too.
Back when I was discussing my conundrum with my mother, she’d said, “You are just like me. You care too much about pleasing other people and about being a good girl.”
Then there had been a long pause. We both knew, from a lifetime of experience, that I have never cared a whit about being pleasing other people or about being a good girl.
Here’s the latest proof: in writing this blog post, I have violated Item 3. I have not held off on writing about the diet study.
And now, I am excited to announce that I am launching my own study. On my own terms. I will try out 300 MG Biotin per day. And I will write about it as much as I please.