A year ago I was living through the biggest and scariest crisis of my life. I had just been diagnosed with MS – Multiple Sclerosis. Although the Neurologist tried to reassure me, “Of all the neurological conditions it could’ve been, this is the best one to get,” I couldn’t help but feel an existential dread. How would this affect me? Was I destined for a life of continuing debilitation? Would I lose more and more abilities and eventually my ability to do the work I’ve come to really love? And what about my role as a mother? I didn’t want to think about a future of disappointing my daughter and not being able to be there for her in ways that I had always imagined I would be. And as a wife? I know what a hard road it is to become a caretaker of someone with a degenerative disease, and I didn’t want to saddle my husband with that.

I tried to gather as much information as I could about the advances in the medications and treatment for MS that had been developed in the last 25 years. They have been successful at slowing the progression of MS, so it might be years before I felt the full weight of my diagnosis. But none of them were curative – once diagnosed, nothing (that has been developed up until now) can reverse or stop you from having MS.

My neurologist ordered a battery of blood tests to determine some more specifics about my body and my disease what kind of medications I would best tolerate. This was in addition to the multiple tests – including 2 MRIs (of my brain and spine) and a lumbar puncture (Spinal tap) that I had already undergone to come up with my diagnosis. It was amazing to me how quickly these tests were lined up and completed. That was my first clue that this might be something rather serious. And the speed of appointments and tests continued at a rapid pace. They wanted to get me on some form of treatment as soon as they determined what that would be.

But let me back up a bit. How did I even end up suspecting and getting tested for MS? Well, most of it began about six months prior, when I noticed that I was having trouble with my memory – specifically, I’d be speaking and suddenly couldn’t name an everyday object – like a “dresser” or the “sink.” At the time I was the primary caregiver for my mother whose memory and cognition are declining due to  Alzheimer’s, and I immediately recognized these memory lapses as something to be concerned about. In addition to this, there were two incidents over the summer – three weeks apart – when I had been walking across some uneven grass, and I stumbled and took a hard fall and sprained my ankle (first my right and then my left!). They were situations where normally, I would have been able to “catch myself” before I fell, but I wasn’t able to these times. I also recognized that I would often be off-balance and have to lean against the wall or hold on to a nearby object to keep myself from falling. All of these added up to a conclusion in my mind that “something was going on and I really needed to get this checked out.”

I contacted my Primary doctor for a visit, and she then made a referral for me to see a Neurologist at the illustrious Medical Center where I used to work as a chaplain. While I had left that job “voluntarily,” the truth is that I had become burned out and was no longer supported or welcomed there. So, understandably, I was reluctant to go there for care, but I also recognized that I was likely to get the best *medical* care in our area there, so I went.

The Neurologist gave me a full exam, including measuring my cognition and memory. Everything tested completely normal, with the exception of a response I had to a test of physical stimuli (the Babinski reflex) that usually indicates a disorder of the Central Nervous System. The Neurologist tested it again after a few minutes, and I showed the same response. So he explained to me that we should “do some further tests” to see what they indicated. As each test came back, it was deemed “inconclusive… it could be a number of different things,” so further tests were ordered. And then finally, after my Lumbar Puncture showed the presence of a specific inflammation-related protein in my Cerebrospinal Fluid, my diagnosis was reached.

How the news was delivered to me was a case study in how badly something like this could be handled. It had been a week and a half since my Lumbar Puncture, and I hadn’t heard any news, so I called the Neurologist’s office and told them I was hoping to receive the results of my test. When I received a call back, I was in the middle of a Zoom meeting, but explained that I needed to take this call. The Nurse Practitioner began by saying something about “all of the test results not being back yet,” but that she could “confirm a diagnosis of MS.” She went on to talk about the specifics of exactly what led them to “confirm the diagnosis,” and I frantically scribbled notes, but I wasn’t registering most of what she said. She spoke about it having “already affected my spinal cord” and that my disease was “somewhat advanced.” She said that we would “meet next month to have a conversation in person,” and I wondered why we hadn’t met in person to have this conversation. The only question I managed to form was whether there was any chance of a false positive – that their diagnosis could possibly be wrong? She said that it was “highly unlikely” and that the diagnosis was 95% accurate.

It felt like the ground had given way beneath me and I was falling into an abyss.

It's interesting… if you break down the word “disease,” you get “dis-ease.” A condition of being, profoundly, in many cases, “not at ease.” Besides the physical effects of a disease on your body, there was the mental, emotional and spiritual load you were bearing as a result of worry and dread about the future. I’m acutely aware of these effects, as a result of my ten years as a hospital chaplain. But that doesn’t mean I was better prepared to face the reality of them, it just means I understood it because I had seen it and been on “the other side of the bed” hundreds of times. Nothing prepares you for a diagnosis like this. Your faith can help you, and I was trying desperately to lean on that, but even my faith was feeling shaky after a year of the pandemic and the recent political and national events.

There were a few things that helped to buffer the harsh reality of my situation. My husband, God bless him, offered me his unwavering support and said he would be there for me no matter what this disease threw at us as a family. (We chose not to tell my then-5-year-old daughter, as we were still actively trying to wrap our head around it, and wanted to be able to tell her when we could do so without bursting into tears and offer an explanation that she could understand). I drew up a list of people that I would need to tell about my diagnosis, with names of those who may also be affected by my news and those I could really count on to help me at the top. I have three dear friends, two local and one in Japan, who heard the news next. They had actually already been supporting me through my testing and potential-diagnosis period, listening to my retelling of events but, more importantly, the undercurrent of fear and uncertainty I felt. The two local friends were even game for my one attempt at “laughing at the ridiculousness of the situation” by virtually watching “This is Spinal Tap” with me via Zoom a few days before my own procedure. Their laughter, their attentive and caring listening, and their promises to stand by me through thick and thin, were a life raft to me in this dark and murky time.

I wanted to tell my parents, and to be comforted or supported by them, but my dad had died just three months earlier, and my mom wouldn’t have been able to make sense of it, much less offer me any wisdom or perspective. These harsh realities deeply saddened me and felt like adding insult to injury.

Because of my familiarity with healthcare, in the moments when I wasn’t grieving this news, the non-emotional side of my brain was kicking into high gear, gathering information and seeking advice from various sources. The first former colleague and friend I reached out to was a Pediatric Neurologist. I told her about the diagnosis and said, “If you or a loved one were to get this diagnosis, what doctor would you want them to go see?” and she immediately gave me a name. She told me that this doctor was well-known, not only in our immediate area but regionally, as an expert in the treatment of MS.

Next, I contacted an Integrative Doctor that I had seen years earlier and asked about scheduling a consult. She told me that she was retiring in about a month, but when I told her the reason for my call, she found a way to squeeze me in. I also scheduled a time to meet with my Massage Therapist of fifteen years who was himself a huge proponent of alternative and naturopathic treatments. I met with both of these wonderful people within a week after my diagnosis. I was motivated by the thought that I wanted to use every available tool to fight this disease. Between the two visits, I took over ten pages of notes, and came away with several common themes – that ultimately, I was in charge of both my health and my choices regarding treatment (to not see myself as passive, a victim, or at fault in any way), that I should not underestimate the impact that lifestyle changes and stress management could have on my illness, and that because MS is both a neurological and also an autoimmune condition, changing my diet and supplements was very likely to positively impact the course of my disease. I also spoke with a mom-friend of mine who has also coped with an autoimmune disease, and she spoke of taking both “Western” and alternative approaches to her treatment, and how it has helped her.

I decided then and there to make some radical changes to my daily life. I immediately eliminated gluten from my diet (as it the most common food intolerance), and over time limited my intake of dairy, reduced the sugar and sweets in my diet, and worked toward the elimination of processed foods from my diet. I also made the difficult choice to eliminate the biggest single source of stress in my life – being the primary caretaker, POA, and HCP for my mother. I wrote to all of my siblings informing them of my diagnosis and the absolute necessity of taking care of my health, and told them I would be stepping back from mom’s care. I immediately felt a weight lifted from my shoulders, and over the next few weeks and months an ease returned to my life that I hadn’t felt in years.​