Facing Multiple Sclerosis With His Men

Michael Jaffe
Mid-Atlantic Region

It was March of 2014 on the island of Curacao in the Caribbean. Eight MDI men including our “stubborn mule” ex-president, Howard Spierer, spent a few spectacular days together. All of us had been swimming in the ocean, and Spierer was stuck on the poolside terrace the entire time (really not too shabby either). On the final day he agreed to allow us to carry him to the jump off point. We carried him on a chaise lounge. He trusted us. We carried him like “angel’s wings.” It is special moments like this and many more that keep me coming back to the men of my team, my division, my region, and MDI. Of the experience, Spierer said, “It was incredibly humbling – the love that I felt from these men, it was so present. I was so present about how much these men cared about me.”  

Michael Jaffe, Mid-Atlantic Region


(Pics: In rehab walking the walk.  In India, attending a teammate’s wedding.)

Howard Spierer joined the men’s division in June 1994. He has held just about every job in the organization, including point man 16 times and MDI President from 2008 – 2010. As mentor and elder, he is presently on the Special Ops Team supporting the vision to have men’s teams outside of the already established regions. In 1995 he was diagnosed with multiple sclerosis, and since then has been learning lesson after lesson while facing and working with the disease. In February The Legacy caught up with Spierer at the Kessler Rehabilitation Center in Livingston, New Jersey where he was doing physical therapy to combat the effects of MS. His story and his perseverance tell the story. 

Before you had MS, what did you do that you can’t do now?

Before I had MS, I was incredibly physically active. For my job, I used to take high school kids on cross-country camping trips every summer. I used to hike all the national parks, 20 miles hikes. I once took 15 boys one summer whitewater rafting, and rock climbing up the Grand Tetons. I would travel everywhere. I went to Tibet. I’d jump out of airplanes and go scuba diving.

What I found with MS, every year there would be something I couldn’t do anymore. Five years ago, the last thing I couldn’t do was play golf. If I went into the sand trap I’d be dead. In the last five years there’s been a real deterioration where my body was just shutting down.

When did you first realize you had the disease?

I was whitewater rafting. My body felt really, really funky. Everything just stopped. I got vertigo and muscle tightness. I had no idea what it was. I thought it was from a really hard night of partying. 

It took a bunch of doctors to diagnose it as MS.

What was your first response?

I took it on like a challenge. I let men know about it. I came at it really, really hard. There’s no cure for it, so I did a lot of alternative stuff like acupuncture, massage and yoga. They all seemed to work for a while. I still did what I was doing, but I just realized over time I couldn’t do everything at the same level I could before.  

Lately, I understand you chose to really attempt a comeback.

What I realized was my condition was wiping me out and wiping my wife out. Her trying to be a caregiver was killing her. I knew I had to do something to stop it. I decided to do intense physical therapy for a month.  

What’s been the result?

I’m now walking again; I can walk upstairs, get to the bathroom, in and out of bed. Everything I couldn’t do a month ago.

Talk about the process of deciding to really focus on your recovery.

I was at a point where I was talking to my job about going on disability. And I thought that was total bullshit. I wasn’t at a point to just give up. I intuitively got the sense that if I did the work, I could get my mobility back. I thought, “Let me see if I can do this.” 

What is your day like? 

Four hours a day I do PT (physical therapy), plus I work as an attorney six hours a day, and then at night I work on MDI stuff. 

How has MDI supported you through the process?

I have team meetings here once a week. And it’s funny; the people who work here are all fascinated by MDI. They even let me go out one day when the new RC was being chosen in our region. Men came over to watch the Super Bowl. Five years ago I was able to get to India for a teammate’s wedding. No way in hell could I have done that on my own. These guys got me around from point A to point B, and I couldn’t have done it without their support. Also, last year a bunch of men went down to Curacao one week. Men had me on a lounge chair, carrying me out to the cliff so I could see the view. 

What have you learned through this process?

Anybody who knows me will tell you being taken care of is not easy for me. Part of the reason I got where I got is my unwillingness to accept help. I’ve been really stubborn to push myself. Me agreeing to come to this facility was a major step for me, acknowledging I can’t do it on my own anymore; I need help. What I love about men of MDI is they know how to support me without coddling me. I don’t do well with men fawning over me. They know how to knock me in the head, do what they need to do to get me from point A and point B but not be “ah, this poor guy.” 

What are the emotions around this experience?

It’s humbling. I’m incredibly grateful for the support. Knowing that men would be calling me during a snowstorm, with subzero temperatures, wondering if I wanted them to check on my wife. Shit like that. The hard thing to me is that I can’t take care of my wife the way I used to. That’s the part that’s really emotional.

The men will go to the limits to support others, won’t they? 

Anything is possible, especially in this organization where men can help you make it happen. 

These are men I’ve known forever. My nephew has been great. Comes out to my house, driving an hour and a half to get there and help me do something. I’ve had team meetings where men have helped me walk up hill where it would normally take 30 minutes to do it. And what’s great about it is men push me knowing how reluctant I am to ask for help. They’ll prod me. They will say, “What do you need?” And I’ll say, “Nothing.” Then they will ask again, “What do you need,” and I’ll say, “Nothing.” And then they’ll say, “If it wasn’t nothing, what would you need?” Ultimately I have to come up with something.

Men won’t sell you out because you have a disability.

Men don’t see me as damaged goods, and that allows me to live my life powerfully. They won’t give me a pass because of my challenges. I’ve really allowed for people to give back to me. The real gift in my MS is that it made me accessible to a lot of men. Before MS, I intimidated a lot of people; some men were terrified of me and couldn’t do anything for me.

Do you have any advice for men with disabilities or any challenges?

What I’ve learned is to just focus on what I need to do to get to the next place. Don’t worry about where will I be in five years. Or the fact I can’t play basketball now. I focus on: “What do I have right now? What do I need to do to get to the next place?” It makes life a lot easier. Not freaking out about what I lost. Not freaking out about what the future holds. But literally living in the moment and making the most of what I have … and appreciating the hell out of it. 

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