Personal Blog

Pondering life's wonders and complexities...

My MS Journey

March 26, 2022

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.

At the end of April, I was finally able to see the MS Specialist whose name I had been given

right after my diagnosis. I was anxious to meet with her and get her recommendations for treatment (especially because my in-person conversation with the Nurse Practitioner essentially consisted of her handing me a half dozen drug brochures and telling me to read them over and choose which one I wanted to take – WTF?!). I was sure – given the fact that she only treated MS patients, that she would be able to knowledgably talk me through my options.


Before I even met her, I already knew that my experience was going to be so much better than with the Neurologist at the Medical Center. While we were waiting in the exam room (John, Katie, and I), she popped her head in and introduced herself. I started apologizing for having brought our daughter with us, explaining that my sitter fell through at the last minute, and she said, “Oh, no worries! I have three of them!” and I breathed a sigh of relief. Then, the Resident working with her came in, sat down, and said, “Let me see if I have your history correct…” and instead of asking me to retell my entire history, she recited my symptoms, tests, past medical history, and the recent diagnosis. When she was done, she asked if she had left anything out. In shock, I stammered, “No, and not only that, but you explained it in exactly the way I would have!” She then asked me what questions I had for the doctor. I mentioned several questions, including whether or not she thought I should begin any particular medication, given that my symptoms were quite mild.


When the doctor came in, she sat right in front of me and looked at me for a minute. She then apologized and said, “I’m gathering my thoughts.” I told her to take as much time as she needed, that I was just happy to be there meeting with her! She then said, “When I meet with a new patient, and read over their files and all their tests and labs, I generally get a ‘gut feeling’ about what treatment I will recommend. But I looked over your entire file, and I get nothing!” I wasn’t sure what she meant, or whether this was a good or a bad thing, so I continued to look at her. She continued by explaining that my case “really didn’t look like any of the MS patients she treats,” how my brain scan was “underwhelming” (she later clarified that this meant I had a very healthy looking brain, because most of the brain scans she sees are of disease-affected brains), and that there were alternative explanations for the results of my MRIs and Lumbar Puncture. And what she said next absolutely floored John and I. “I really don’t think you have MS!”  I’ve never been so confused – and so relieved – at hearing something in my life!


She continued to explain her reasoning, and the alternate explanations for the test results, and stopped several times to answer our questions. John and I just kept looking at each other in disbelief. At the end of our visit, the doctor explained that she still wanted to follow me, and repeat the MRIs in six months, and make sure I didn’t cross any sort of threshold that might then change her mind about the diagnosis. In the meantime, she encouraged me to continue to make the kind of changes I had already made in my eating and continue to reduce the stress in my life.


We walked out of her office, a bit dazed and confused, feeling like we had just gotten a second chance at a healthy life that I thought I had lost when I got the diagnosis.


After all the testing I’ve gone through, and several more specialist appointments, and meeting with several another integrative health professional, we’ve come to the conclusion that my body is showing some early signs of an autoimmune disease, and that it’s also exhibiting an inflammatory response, which is often caused – or exacerbated – by stress. So I’ve decided to do whatever I possibly can to minimize these effects, to undo any damage already done, and prevent any worsening of my symptoms, or of any disease that’s lurking in my body.


Like many other people, I’ve tried to make diet and lifestyle changes before, only to return to old habits pretty quickly. But getting, quite literally, the health “scare of my life” has motivated me to maintain my changes in eating, to continue to prioritize my health and self-care as if my life depended on it (because it really does!), and to distance myself from any avoidable stress. I’ve lost 40 pounds, feel better and more energetic than I have in a long time, and am hopeful about the future. Most of all, I’m grateful at having received this “second chance” at living well and appreciating my health.


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26 Months

April 17, 2018

When I was fourteen years old, I was approached by a neighbor about babysitting her almost-two-year old daughter. Over the next several months, our families became quite close and I babysat for little “Sarah”* regularly. I even attended her 2nd birthday party, a sugar-fueled occasion with cousins and other family members!


And then, one tragic day just two months later, little Sarah died after a brief respiratory illness, several trips to the doctor, and then a screaming phone call from her mother who had just called the paramedics. I remember running across the street with my mom to be with Sarah’s mother as she grappled to understand the fact that her baby had just stopped breathing. She was 26 months old.


I remained close to the family – in the best way I could as a grief-shaken fourteen year old – until the memories in that house were too much and they moved away. We stayed in touch, but they went on to have two more children and our lives slowly grew apart. But after thirty-five years, I can tell you that my relationship with their family during that time and the impact of little Sarah’s death left a deep and formative impression on me.


This month my own daughter turns 26 months old. I’ve been waiting for this “milestone” with a mixture of curiosity and dread. I have never before been a mother to a child – a daughter – who was exactly the age Sarah was when she died, and I have never grappled with just how enormously devastating it would be to lose a child at such a tender age. Losing a child of any age is devastating,  but I have a deep and personal connection to a “26 month old girl,” and therefore this month has me observing my daughter more keenly, loving her more tenderly, and remembering the time, 35 years ago, when a family I knew lost a beautiful girl.


My daughter has curly brown hair with reddish highlights, just like Sarah did. She’s happy, vibrant, and talkative, just like I remember Sarah being. Over the past 26 months, I have changed careers, become a stay-at-home mom and built my life around my beautiful daughter, who, incidentally, became ours through adoption after a – wait for it – 26 month wait. I cannot begin to fathom how I would move forward if she were taken from me at this point. And yet this is what happened to this dear family. I’m only now beginning to understand the depth of their loss.


But because there is a tapestry pattern of sorts to every life, it’s only in the last few years that I’ve realized that my vocation, my deep calling, as a Chaplain to work with people in grief and sadness and help accompany them through the abyss is very likely tied to my formative experience of witnessing the death of a two year old that I knew and loved. I sometimes hear people say, “Oh, how can you do this work? How can you be around death and sadness all the time?” And my answer has many parts. But one of those parts is the fact that I learned – I experienced – early on, that life is short and precious and that facing death is something that you can’t – and shouldn’t – do alone. My early experience also taught me to embrace and enjoy the good in life, because it’s the counterbalance to all the hard stuff. Pain and death are inevitable, but so are love and joy, if you let them be.


I have struggled with, and now manage, clinical depression in my life. As close as I am sometimes brought to the edge of darkness – by my own pain or the pain of others I am helping – I believe I am better equipped to handle it because I’ve learned how to manage the ebbs and flows of sadness, both existential and emotional.


I also believe that all of these experiences are what make me great at what I currently do, which is legally joining people in marriage! A minister or officiant is more than a Host or Master of Ceremonies leading you through a wedding performance. Ideally, I am there to listen, calm, encourage and help couples recognize the sacredness and meaning of the vows that they’re about to take. Sure, I’m as ready to have a good time and celebrate as the next person, but I’m able to provide some dignity and gravitas to their incredibly important event!


I was reminded of the importance of this when I met with a couple two days ago to discuss their upcoming small wedding. It’s a second marriage for them both, and they each bring two teenagers/young adults to the blended family, and they had expressed interest in somehow including the kids in the ceremony. As I talked with them, I found myself saying, “This may be the perfect chance to tell them that they are the best thing that has ever happened in your life, and that your new spouse is the second best thing, and how you’re so happy and grateful to be bringing the best parts of your life together! Because this is the kind of stuff that we all think but that we seldom say! And I know that it would mean so much to them to hear you say that!” They agreed that it would be the perfect chance to express their love for their kids as well as their new partner.


* I have changed the name of this dear little one, out of respect for the family's privacy.