Escape From Alcatraz

I started swimming three years ago, after getting the MS diagnosis. I needed a form of exercise I could feel confident I could do until I was old. Running was out. I hate running.

Swimming has the friendly property that the worse you are, the better exercise it is. So it was with me. Boy did I get a lot of exercise early on! I got some pointers here and there, but for the most part just tried to get in the water to build the habit. It took until last fall for me to get truly consistent about swimming. At that point I swam a half mile without stopping for the first time. My pace would have put my mile time well over an hour. That is quite a slow time.

Meanwhile, last summer I started taking cold showers. I’d heard about the Wim Hof Method earlier that year, read the book, and was intrigued by some of it’s practices. To summarize, it’s a combination of a breathing practice, mindfulness techniques, and cold therapy. While I wasn’t 100% convinced yet, I decided parts of it I was willing to try.

The progression of MS is caused by a runaway inflammatory effect. The root cause of the disease is unknown. There is no cure.

Most of the work you do to ‘manage’ MS is to limit the symptoms. Which means limiting inflammation. Heat is a big issue. Heat can incite more inflammation, and for someone who already has a propensity for inflammation, that’s bad. Hot tubs are a no-no. Getting overheated in the summer is a drag and can make you feel woozy.

So I figured if heat makes it worse, maybe cold makes it better. Said another way — and remembering your high school chemistry class — instead of pumping heat into an endothermic reaction (inflammatory processes increase when heat is added), what happens if we change it to an exothermic reaction (your body loses heat from a cold shower)? I figured best case, it can actually help with inflammation. Worst case, I prevent a bit of a bump in ‘inflammation’ by taking a cold shower instead of a hot one.

I started taking cold showers every day.

At first it took some getting used to. And to be clear — it’s not that I all of a sudden grew to love the cold (I still get cold). Neither was I torturing myself with showers as cold as they would go. I just started it off a bit past lukewarm to start and then made it colder as I went.

At first I missed hot showers. In a way they felt cathartic. But I will say I do really enjoy cool ones now, if not fully fledged cold ones yet. Within a few weeks of doing this, I noticed a bump in energy and mental clarity. I haven’t looked back since. For months, I probably took less than 5 hot showers total. Nowadays, hot showers feel kind of uncomfortable.

Last summer was the first time Alcatraz entered my radar. A new friend told me about SERC (the South End Rowing Club), and how they swim in the bay, and that they swim from Alcatraz. “Damn, that’s impressive” I thought. At this point, I hadn’t swam a whole mile. I could only do half a mile, slowly.

Swimming in the bay in the cold seemed impossible … much less over a mile, in the open water, with currents, and without a wetsuit. Plus MS.

There’s the familiar twist of the knife. Plus MS.

I connected the dots to the Wim Hof practices and how ‘normal people’ might be able to do that, and left it at that.

I was in the midst of leveling up all of my personal health habits. I cared more about being good about my eating, meditation, swimming, and sleeping habits. I didn’t want to waste my time trying something crazy and sacrificing all the other good habits I’d worked so hard to gain.

But then something budged.

I was chatting with a friend about our dreams. Specifically he asked what my superpower would be. Surprising myself, I blurted out that I would swim from Alcatraz. Woah! I hadn’t realized that the idea had stuck with me. It seemed like climbing Everest. I get teary-eyed every time I think about it, and what it means to me. I don’t know how to express it in words, but if you have MS I’m sure you understand.

Why couldn’t I swim to Alcatraz?

Do I have the aerobic capacity to swim for that long?

(I’ve never been good at endurance sports, and MS plays a role in that)

Could I swim that long in the cold?

Would my symptoms get in my way?

What would I do to warm up afterwards?

(I’d been avoiding hot showers for months, but everyone at the club uses the sauna after getting in the cold water)

Are there other unknown reasons that MS is incompatible with cold therapy?

All of a sudden, instead of reason why I couldn’t do it, I had a bunch of questions in front of me. Questions that I didn’t know the answers to. And so I resolved to try.

I cried the first time I realized I was going to try it. There’s something big in there for me about facing this disease with all of myself.

And the boulder budged! It wasn’t immovable after all! It was just a massive thing. But massive things can be moved with the right leverage.

And I secretly got excited. Very excited. “I wonder if I can do it. I bet I can do it. I bet no one believes me. That’s ok. I know I can.”

Something deep inside knows that I can. And I haven’t heard that tiny little voice in a long time. A long long time. And I like that voice. All of a sudden, I became certain I could do it.

And you know what? It did seem crazy to me 8 months ago. When friends hear about the swim, I always hear the word crazy. When I tell other members of the swim club, they ask me what swim I’m doing after Alcatraz — to them it is the most normal thing in the world.

And this is actually a fun exercise for you, the reader. What was your reaction? Interesting. If you thought I was or am crazy for doing this. Why? That’s a line in your head, not mine.

Because to me it seems inevitable. Or at least normal? Maybe crazy? Ok — I honestly can’t tell anymore. And I cannot think of a better way to define agency — I don’t know where my limits are anymore. I feel freedom that I haven’t felt since before my diagnosis. Just when I think this is normal, I’m surprised to find myself overwhelmed again by the idea.

To me, this swim is the ultimate act of self expression. It represents how much agency I have when I trust myself, think positively, and rely on others.

There is no finish line. There are always things to work on. But. I deserve this win. I’ve worked hard to get where I am right now. I will need to work harder to achieve this. I will need to rely on others. I will have dark moments. I will hit walls.

And that feels like a pretty great allegory for the challenges in my life. So the thing I will walk away with is the ability to thrive and deliver — by trusting myself and my support network.

And that is who I am. I am someone who can grow and thrive. I’m not trying to be anyone else, and I don’t need to be anything else, but I am growing into the person I’ve always been.

Originally, I was just going to do the swim for me. Then I realized I should probably write about it — I hope by sharing the story I can affect some change. I was going to do so under a pen name, but after being inspired at the Wim Hof workshop last week, I realized I was ready to ‘come out’. I’m also ready to announce my intention to do the swim even though I can’t guarantee the outcome. If you know me, you know how uncomfortable that makes me. But here we are. Exciting! I can only do this because of the love and support I’ve received from my community. The outreach from family and friends has been extraordinary. Every single person at SERC has been inspiring and wonderful. I feel like I belong there. I’m proud and stubborn, but I’ve learned to open up. Lately I’m overwhelmed with love. They say you can only feel as good as you’ll allow yourself. Truly this amount of love and support is overwhelming to me. For me, there is only one way up this mountain, but it’s far from a lonely path.

As is so often the case with MS, when we are met with challenges in everyday life — it’s not if we surmount them, it’s how.

And ‘how’ I’ll accomplish this is pretty clear to me at this point — with a little help from my friends

P.S.

Many people have asked if they can donate towards the cause. My short answer is emphatically no. At least not yet. While there are foundations out there that are doing great work educating, bringing people together, and raising money (@MSCureFund), the options on how to spend the money aren’t good enough in my opinion. We can do better. My dream is to engage people in participating in good studies for MS through the blog. And to work with research institutions to help design thorough studies so that there are ‘good’ options for the funds to spend their money on. I would love it if we could make a study around the Wim Hof Method for example. I have a lot of reasons why I believe most studies aren’t good. But there is too much to unpack here in a footnote; these reasons will be a future post. And at that point you can evaluate whether you agree or not.