This past December, the world lost Walter Hermanns, one of the most amazing and unique human beings I have ever been privileged to know and love. That is to say, we lost his daily presence in our midst – but his legacy lives on in extraordinary ways …. and any of us who knew him will remember him and be inspired by him for the rest of our lives.
Walter was a dear friend of mine, but I would be the first to admit that in his last few years, there were other people who were much better friends to him in terms of plain old attentiveness …. in terms of Being There. Dave Krueger, Jim Veltman, Darryl Sturino, just to name three, spent much more time with Walter in the trenches of his daily life where MS exacted such a heavy toll. I would drop in from time to time to have lunch with Walter or visit him in the hospital, but these guys were shoulder to shoulder with Walter and his struggle with/against MS in a way that I never was. I almost wrote “in a way that I never could be” except that I don’t think that’s true. Or maybe a better way to put it is that thanks to a whole host of choices which I made about my life – and specifically about my work – it wasn’t really possible for me to be the kind of attentive friend to Walter that I should have been and wish so much I had been.
Why is all this on my mind right now? It’s because of an incredibly powerful and poignant documentary for the PBS series P.O.V. – a film titled “When I Walk.” Filmmaker Jason DaSilva had earned great admiration and renown as a documentarian by the time he was 25. But in 2006, he was diagnosed with MS – and decided to turn his own camera lens upon himself and make an intensely frank and personal film about the relentless encroachment of MS into every facet of his life. I am sent preview DVD’s of all POV documentaries, and I made a special point of watching this one because of its subject matter. (Just from reading its description, I knew it would be fascinating.) But I had no idea how moving and inspiring it would be. Nor did I realize how revelatory it would be- how much it would help me understand the brutal gauntlet which Walter and his family faced with such grace and courage, year after year after year.
It’s not that I didn’t know a fair amount about Walter’s difficulties. But until I watched this film, I never stopped to think about the challenge that getting dressed would have posed for Walter. And I especially never thought about how hard it would be to gradually lose the ability to do that – to have to perpetually relearn how to do things or find new ways to do them until the day when it became imperative to have help – until the day when it eventually became pretty much something that had to be done entirely for him by someone else. That had to be so hard – although Walter had this incredible capacity to treat it as an adventure of sorts.
The film also explores the whole matter of mobility – the grim progression from limping unaided to limping with a cane to using a walker to using a wheelchair and finally to using a scooter. When I interviewed Jason for the Morning Show, I told him that one of my most vivid memories of Walter’s odyssey was how he tried to greet each step of this progression as One More Gift that allowed him to retain his mobility rather than one more threshold that marked his decline. Jason really appreciated that and said that he had tried to do the same thing, though it wasn’t easy. Both in the film and in our phone interview, Jason reminded me a bit of Walter – in his smarts and in his resilient sense of humor even in the face of something so tragic.
There are a lot of incredible moments in this film- and one of them comes at the very beginning, when we see the very startling moment when Jason first experiences the symptoms of MS. He and his family are on vacation on St. Marten’s Island, and one afternoon they decide to play on a beach which happens to be adjacent to the local air strip – where a common pastime is to stand right beneath the flight path and try to remain standing when planes take off right above you. Jason is knocked to the sand – which is not a surprise – but then finds it impossible to stand up again, which is. And although everyone – including Jason himself – laughs about it at first, it’s nervous laughter which betrays their mounting sense of concern. It’s extraordinarily rare to have such a moment caught on film- but here it is …. and it’s shattering to see it. From there, we follow Jason on his journey over the next several years, as MS wreaks its awful damage. (The disease progresses even faster for Jason than it did with Walter.)
One of the most poignant moments in the film comes when Jason and his brother Leigh fly to India to try and complete another of Jason’s film projects. (Jason’s worsening MS symptoms eventually force him to abandon the project.) While in India, Jason and his brother visit one of their Indian relatives – a genial uncle who is in his mid 80’s and appears to be in vibrant health. It was only upon watching this scene a second time that I realized what was so sad about it- that we see Jason, not yet thirty years old, limping with a walker- while his elderly uncle walks easily and energetically, with no cane or other assistance. Immediately after this, we’re shown a rapidly changing collage of old photos showing us the faces of all kinds of Jason’s ancestors from over the generations – over which we hear him talking about the Mystery of Fate. There is no way to know just what troubles or challenges await any of us on our own life’s path – and none of us gets to choose the hand which we are dealt. So true.
This film is not just about Jason and his struggles with MS. It is also the story of a woman named Alice Cook, whom he meets through an MS support group. (Her mother has MS.) Their friendship blossoms into romance, and eventually the two of them get married in a beautiful open-air wedding of which we catch a couple of glimpses in the film. Alice is an amazing woman- but one of the things I most appreciate about the film is that it permits us to see both her joys and her sorrows. It allows us a remarkably clear and even revelatory view of what it means to be a Caregiver …. although I’m sure it’s only when you live it, as Alice has or as Lynn did, that you can really know what it feels like to bear this kind of responsibility.
One more theme of the film is that of accessibility- and the fact that so much of the world seems designed precisely to create insurmountable barriers for people in wheel chairs. After living with that frustration for so long, Jason and his wife seek to create a web-based tool called AXS Map, with which people can find out what public places are accessible (and to what extent) and which ones are not. A small army of able-bodied volunteers fan out across New York City to ascertain the accessibility of various locales – sometimes by traveling in a wheel chair or scooter so as to confront the whole accessibility issue first hand – and with this wealth of information, AXS Map is born (and still going strong!) It’s neat to see this tool take shape, but just as exciting to see Jason so excited and galvanized by the project. It brought to mind how Walter never stopped wanting to make a real difference in the lives of other people – and did it, in all kinds of extraordinary ways.
This film made me wish that someone would make a film about Walter- because his story deserves to be more widely known- but in the meantime, I’m grateful for this film and for how it reminded me again and again of Walter’s own inspiring determination to not allow MS to have the final word.
“When I Walk” is being televised very very early Sunday morning – 2 a.m. – on Milwaukee Public TV channel 10. But if you miss its telecast, go to pbs.org, click on Programs, find POV, and look for the link to watch the program free of charge. One way or another, please watch this film …. if for no other reason than to be reminded of people like Jason and Alice – and Walter and Lynn – and the millions of others for whom MS is an unfortunate reality, but who manage to meet its challenges with incredible courage.
pictured above: Jason and Alice at their wedding. This is their recessional.