I’ve learnt to expect nothing and accept everything

Naturopathic doctor Michael Friedman reflects on what MS has taught him 10 years on from his diagnosis

As I sit at my desk, I can’t help but reflect on my experiences with multiple sclerosis (MS) and all that I’ve written about in my new book, There’s No Pill for This. My thoughts keep returning to this theme – although I’ve experienced improvement in my symptoms, and my physical signs of this, my journey hasn’t been without bumps. I still have bad days. Some of them are really bad. And I want to reassure you that that’s OK. Just as icier, colder nights cause maple trees to make sweeter syrup, the worst MS attacks can strengthen emotional and psychological resiliency.

Transverse myelitis

A few years ago I unexpectedly found myself overtaken by a condition called transverse myelitis, an acute attack on the spinal cord. It can occur on its own or in conjunction with MS. It can be mild and temporary or result in permanent quadriplegia. And it is fast. It’s like having an MS attack on overdrive. The symptoms can manifest in a period of several hours. Previous to this episode, I had been doing everything I could to be as healthy as possible, taking all the protocols for neuroinflammation and neuroprotection with herbs, diet, hormones, and prescription drugs such as Tecfidera. But I was bitten by a tick that was carrying the Lyme disease spirochete, and that I speculated triggered the severe attack.

What I’ve learned

My experiences with transverse myelitis and autonomic dysfunction are the two most recent events in my MS journey, and they are among my most intense, too. From them, and, indeed from my whole experience living with MS, this is what I have learned.

Every experience has a silver lining. If you can’t see the silver lining right away, it’s possible to reframe your mindset and create one for yourself. Here’s what I mean.

When I was battling the effects of transverse myelitis, life was very rough. The only way I could get around the house the first night was to lie on the floor and drag myself by the arms, grabbing the walls and the legs of chairs just to move from one part of a room to the next. I felt like an infant who’d just learned to crawl. I’d regressed, not progressed, and my family was sad and scared as they watched me struggle.

Both my father and my brother had been accomplished ice climbers during their lives. At some point, it struck me that my challenges in getting around the house on the floor were somewhat similar to their accomplishment in climbing a peak. In some ways, it might have been equally satisfying. So with that attitude adjustment, I prepared to traverse the north face of our kitchen.

Change in perspective

During this tough time, I felt a sense of significant accomplishment whenever I successfully solved the mental and physical puzzle of getting from point A to point B. I began to appreciate what I could do, not what I couldn’t do. I felt, in many ways, that my horizontal ‘ice climbing’ might even have been more difficult than the vertical kind because I had no choice. For me, the silver lining is that during my struggle to navigate my home, I experienced many pleasant memories of my father and brother that I might otherwise not have recalled.

Two days after being diagnosed with transverse myelitis, I was tremendously fortunate to regain use of my legs. Still, many other challenges remained. I still couldn’t swallow well. It took many more weeks of intensive therapy to recover, including having to practice enunciating simple sounds like t and z over and over again. Honestly, I felt disheartened – especially since my four-year-old daughter was learning to say four-syllable words at the same time – but instead I brought my focus back to my ice-climbing lesson. We shouldn’t compare our accomplishments with those of others and make that the basis of our satisfaction. For some people with MS, relearning to walk at age 50 might bring similar satisfaction to that of first learning to walk as a child.

I am never fully in control of anything. Despite all of my experiences over the years, it still never ceases to surprise and amaze me how quickly my body and cognition can change. MS has a way of humbling me – reminding me, after each attack, that my ability to pilot the plane of my own future is an illusion.

After all, I took all the right conventional and herbal medicines. I made sure to get enough sleep. I exercised as much as I could. I drank power smoothies. I underwent a fecal transplant and follow-up therapies. I didn’t smoke or do drugs. The Indian side of my family teaches that our fate is a partnership between us and God. I was doing my job as I believed it to be, and casting the rest of my fate to a higher power.

In many ways, I did great. Over an eight-year period, the lesion my neurologist had described as a ‘ticking time bomb’ grew very little. But as I aged, my body had more difficulty adjusting to the lesion, and I began experiencing attacks that I couldn’t predict and had no way of warding off. And no two attacks were exactly the same. Sometimes I’d have balance issues. Other times I couldn’t walk. More than once, I couldn’t remember simple things like what day it was.

I came to realise that control is a myth. God may or may not control my fate, but I certainly don’t. In so many instances when I thought I was in charge, and when I thought I could predict the future, MS smacked me back down to Earth.

I should not take anything for granted. Transverse myelitis taught me that one day I might be running around having fun with my kids, and the next I might be unable to walk. Autonomic dysfunction taught me that one day I could be conversing freely with family and friends, and the next I might have to relearn how to pronounce the letters of the alphabet.

With each attack, I discover something new, about my body and how it reacts and also about the assumptions I have taken for granted – my ability to clearly communicate, to walk, to tie my own shoes, to understand the question someone just asked. I’ve been extremely fortunate to have recovered from each major setback. But, since I know I have no control over the future, there’s no guarantee that I will bounce back the next time, or the time after that. Not taking things for granted is a companion to my humble attempt at a living-in-the-moment philosophy. Every step I take is a gift.

Limiting yourself in life might be freeing. Feeling pain and discomfort while spending time in isolation in meditation or fasting is not necessarily pleasant in the way eating candy is. But life isn’t candy, either.

Thanks to the expert advice from all those ‘-ologists,’ and to the strategies I describe in my new book, during my worst days, even as I struggled with the very real and very human fear of my own mortality and became frustrated with my limitations, I reminded myself that things wouldn’t always be that way. It’s important not to catastrophise your experience. Life goes on. You need to adapt to the world. The world doesn’t adapt to your illness and it shouldn’t.

I did recover from my own worst days. And while I’m never truly the same person I was before an attack – MS has a habit of leaving psychic as well as physical footprints – I want to reiterate that I attribute such ongoing recoveries to the lifestyle modifications I’ve made as I’ve learned about this condition.

When I was first diagnosed 10 years ago, doctors told me my case was moderate to advanced, based on the total number of lesions visible on my MRI. My first MS neurologist told me he had never encountered another patient who already had so many lesions upon first diagnosis. Six years later my second MS neurologist noticed that I no longer had visible cerebral cortical atrophy – the loss of neurons and the connections between them that’s characteristic of many neurodegenerative diseases. She also saw that my progression was incredibly slow, with barely any new lesions on an MRI. She called this remarkable, asked me what I was doing, and told me that pharmaceutical drugs alone couldn’t explain my results.

Conclusions

I have done the best I can and will continue to do so, as best I can. The overall lesson that MS has taught me is that we can make choices about our lives. We can prioritise where we put our energy and focus. On some days, we will have very few options to choose from, because the body ultimately says no. But even then, the mind is always free to choose a path within any limits the body imposes. If you only had 10 steps to take (because your legs don’t work well), where would you go? If you only had 20 words to speak (because your throat muscles don’t work), what would you say – and to whom?

MS forces you to prioritise what’s really important, and that’s the silver lining to the fact that there is no pill for this. Whatever curveball MS throws you, please try to do whatever you can, not only to treat your body, but also to accept it. We are on this journey of life (and MS) together. I wish you and your loved ones all the courage and inspiration you need to feel whole.

Adapted from Dr Michaël Friedman’s new book There’s No Pill for This (Chelsea Green Publishing, November 2020) and is reprinted with permission from the publisher.