The Gift of Hope: Part 2

As the days went on, I tried to come to terms with my new reality.  I came up with a mantra that went something like “Right now, I can walk, I can talk, and I can see.” It was my way of reminding myself to live in the moment, because who knew what the future might hold for me.

As I began to tell the people in my life about my diagnosis, I could see the way they looked at me change right before my eyes. I hated it.  There was pity there now.  I’m not sure I had ever even experienced that feeling before then.  And with each subsequent meeting came the question, along with a look of concern, “So how are you feeling?” People I had known for many years suddenly seemed to see me in an entirely different light.  I was something else now.  Other.  Broken.  Sick.  And as much as I hated it, it felt like they were right. I knew that I needed to learn how to accept it because this was my life now.  I was someone who had MS.

But then one day, with one conversation, once again, everything changed.  I learned that one of my in-laws, a man in his sixties, had also been diagnosed with MS in his early 30’s. He told me that he’d had symptoms much worse than mine at the time of his diagnosis.  Back then, there wasn’t much in the way of treatment available, but he and his wife found a book written by Roy Laver Swank, M.D. Ph.D called The Multiple Sclerosis Diet Book. He followed the diet from the book for a year or two and all of his symptoms disappeared and never came back.  He never used any medication, and he never had any more MS-related problems.

I think that this one conversation truly changed the course of my life.  I went from believing that at some point in the future I would almost certainly be disabled, to having the tiniest sliver of hope that maybe, just maybe, I could continue to live the life that I had completely taken for granted up until that point.  I went into research mode and scoured every source I could find about diet and MS until I found the one that made the most sense to me.

I discovered a book called Overcoming Multiple Sclerosis by Professor George Jelinek, MD.  From my perspective, the science in the book built upon what was started by Dr. Swank.  I jokingly referred to it as “the Swank Diet on crack.” At first the restrictions seemed overwhelming, and I felt a deep sadness about all the things that I would have to give up.  Then I remembered an old weight loss adage I had once heard, “Nothing tastes as good as skinny feels.” I repurposed it.  “Nothing tastes as good as walking feels.” That did it. I knew I could do this.  I knew I had to do this.

I changed my diet completely, almost overnight.  Having been a vegetarian at that time, and not a particularly health-conscious one, the most difficult changes were giving up dairy and fried foods.  This diet also recommended eating fish, so for the first time in years, I was eating animals again, which was another hard pill to swallow.  But I was determined to follow the diet to a T, so that I had the best possible chance of fully reaping its benefits. 

Over time I began to experiment with making new versions of foods that I loved in ways that fell within the requirements of the diet.  Most of the dairy-free cheese options at the store contained coconut, which was another thing that was not permitted, so I began experimenting with my own homemade vegan cheeses until I found one that I liked.

As time went on, I realized that there was almost always a way for me to eat some version of the things that I wanted, just modified so that they conformed to my new dietary requirements.  I started losing weight, my skin got clearer, and overall I was feeling pretty good, all things considered.

We were monitoring my MS via MRI, and while my first follow up MRI six months after my diagnosis did have a new lesion on it, my neurologist said that it was entirely possible that it had appeared before my medication had begun to take effect.  The MRI I had at the one-year mark showed nothing new, and the relief that I felt receiving that news was immense.

Just as I was starting to feel somewhat normal again, I started having a strange feeling in the back of my throat, like there was something caught there.  When you have MS, especially when it’s a relatively new diagnosis, any weird thing you feel in your body becomes a concern that you might be having a relapse.

I saw my primary care doctor, who sent me to an ear nose and throat doctor, who told me that what I was feeling was a result of acid reflux and put me on Omeprazole indefinitely. I wasn’t prepared to accept that, so I went to see a naturopath that a friend of mine had had a really good experience with.

The naturopath agreed that long term Omeprazole was not the answer and performed a food intolerance test.  The results were wild.  So much so, that she wanted to run it again to make sure that it had been accurate. The second test came back the same.  I had numerous food intolerances.  As we discussed them, she said to me, “I think this is the calmest reaction I’ve seen from a patient receiving results like this.” 

I explained to her that I had already completely overhauled my diet in a major way once, and that I knew no matter what I was trying to avoid, I could still find a way to enjoy the foods I loved, even if it looked a lot different than what I was used to.  So once again, I changed my diet.  Within a few weeks the feeling in my throat was gone and I was able to come off the Omeprazole permanently. 

Over the years since then, my dietary needs have continued to evolve, and I have adapted.  I now follow a plant-based diet, avoiding my food intolerances and focusing on nourishing my body, while also allowing myself the occasional indulgence, mostly in the form of french fries.  For me, once I was healed enough, my body began handle the occasional slip without much of an issue.

I have had one major setback in the last decade since my MS diagnosis; a particularly scary and unpleasant experience with reactivated Epstein Barr Virus in 2022, which made me terribly sick for months, affected my liver, and (I believe) caused my first new MS lesion in the six years since I had been diagnosed.  Thankfully the new lesion did not cause any symptoms.  Although it seemed counter intuitive, I trusted my gut and made the decision then to discontinue the use of my disease modifying MS medication because of the concern that it might exacerbate the liver problems I was experiencing.

I made a full recovery from my illness and chose to pursue a more natural path forward concerning my MS, rather than starting a new disease modifying drug.  While I remain prepared to return to traditional MS medication if I develop symptoms, as of today, I continue to be symptom free and have not needed to do so.

It was in the fall of 2015 when I originally received my diagnosis.  Now, almost exactly 10 years later, I am beyond grateful to be able to say that I feel I am healthier than I have ever been.

In many ways, I feel like now, at 41, my life is really just beginning. Looking back, I spent much of the first 30+ years of my life having absolutely no idea who I really was. In no way am I saying that my MS diagnosis defined me, rather, I'm saying that it forced me to wake up and figure out what was actually important to me. It's so easy to take things for granted in life until you're faced with the very real possibility that they will be snatched away. I spent several years after I was diagnosed focused entirely on healing and doing everything that I could to stay healthy. At some point, that didn't have to be my sole focus anymore, and although I had learned who I truly was, I wasn't sure what my purpose was. I could feel that there was something calling to me, but it took me a long time to figure out what.

The first time that the idea of being a health coach crossed my mind, I didn't even know if it was actually a real thing that people did. It rolled around in my brain for many months, but it seemed out of reach. I had no idea where to start. Then one day, under completely random circumstances, I met someone who was a health coach. She shared a lot of information about it with me and suddenly I had a road map. I didn't give myself the time to question, overthink, or second-guess. I dove in with both feet.

My journey with my own health over the last decade led me to feel called to help other people with theirs.  Now, as I'm beginning this new journey, I often think about how different my life might look if I had never received my diagnosis, and if I had never been blessed with the gift of hope that I was given in those early days by my in-law and his experience with MS.  I can honestly say that I feel gratitude for both of those things.

It is my deepest wish that as I move forward in this world, I can give someone else the same gift of hope that he gave me.  I am not saying that belief alone will cure what ails you, but if you don’t believe that it’s possible to get better, it is almost certain that you will not. Through my coaching, I hope that I can help my clients find within themselves, the most powerful belief in their own ability to heal.

~In Loving Memory of BK – Thank you for giving me hope when I needed it most. ~