When I walked

Here was a movie I did not want to see.  Too close to home.  I read about it in the New York Times.   Of course, I knew I would end up going.   It was inevitable.  A young filmmaker documents his descent into the horrors of MS.  I had been there.  In fact, I am still there.  I was not bored with the storyline, only too familiar with it.    The pain would be personal.  I could feel it already.

Multiple sclerosis is progressive debilitating disease.  MS also is a mind game.  It is an illness of loss, which leaves us to constantly measure what we used to do and can do no longer.  Jason DaSilva is a documentarian, diagnosed at a tender age with multiple sclerosis.  He looks like a ten year old with facial hair, a babe in the woods.

Jason does not just battle MS.  He cohabitates with primary progressive MS, virulent and virtually unstoppable.  His slide starts fast.  The condition moves quickly.  The young man moves from cane to walker to scooter with breathtaking speed, almost as if the movie is being speeded up.

The film is about the evolution of approach and attitude, not just the toll on his body.  When I Walk should be spoken in the past tense.  DaSilva leaves his feet stunningly rapidly, presumably never to return.  That is a mighty blow.  Where he travels from there is a telling journey.  The battle moves from his spine to his head.  The skirmishes north of the neck become high drama.

Jason struggles to keep making films.  He travels to places he has visited.  In his head, he watches old films in preparation for new ones he sees in his mind’s eye and will not complete.  Shooting from a sitting position and a new definition of mobility are roadblocks.  His return to India is heartbreaking.

Jason’s struggle is tougher than mine, though there really is no hierarchy of suffering.  I battle secondary progressive MS.   These categories of MS are distinctions without a difference for the chronically healthy.  We all look alike.  But we travel different highways, some hillier and more treacherous than others.  Jason is lost and struggles to find himself.  His mother dishes out tough love so vehemently she either keeps Jason leaning forward or just needs a good smack.

The professional world presents endless challenges for the disabled.  Too often, employers see us as damaged goods.  Given the chance, we become good employees because we work so hard to prove ourselves, demonstrating we can still do it.  Frankly, we are struggling with ourselves to convince the guy in the mirror that we still have the magic.

The social marketplace is tough and requires two extraordinary individuals to make it work.  Jason and his girlfriend Alice share highly personal moments with us.  Alice does not live in Fantasyland.  She expresses her doubts and fears openly, eyes wide open and fully aware that as Jason can do less for himself, she must do more.  Her role as caregiver becomes fulltime work.  They are grownups beyond their years.

Their commitment to each other seems to know no bounds.  When I Walk is a movie worth seeing.  The film is less a treatment of MS than the story of a young couple facing challenges they did not invent and finding their way to happiness.  Too many of us choose to be victims.  Jason and Alice point us to a better way.

14 Responses to When I walked

  1. Trish :-) October 9, 2014 at 6:04 pm #

    I love how even though this man has MS he smiles. He’s genuinely happy and grateful. His mom is awesome!!
    When I saw the beach scene when he fell and wasn’t able to get up without help, it touched me. I’ve been there. I’ve had relapsing remitting MS for 5 years now. Everything is new. Adapting, figuring out what I can do and how long without crashing with exhaustion “for no reason”.

    Thank you for all you do to bring awareness to the people.

    Trish 🙂

  2. Pamela Johnson October 10, 2014 at 6:59 am #

    I was so inspired by Jason, his wife and baby boy. He is an inspiration to all, and seems like such a wonderful person. I feel proud for his accomplishments in the face of diversity, but of course would love to see him find his dream of health.

    I have no idea what research he’s done in relation to his illness, but I would feel remiss if I did not mention a Doctor who cured herself of MS named Dr Terry Wahls. One never knows when or where a clue may come from, and I have a feeling that there were some who saw him on Meredith’s show know of Wahl’s protocol….but do not say anything, so I am. terrywahls.com is where the information can be found.

  3. Carole October 10, 2014 at 11:43 am #

    I haven’t seen the movie yet, but after reading your review, definitely intend to…I was diagnosed 19 years ago, and like you, have a spouse with an awesome sense of humor, who is amazingly supportive, but also helps me to see the humor in everyday life! Wishing Jason every hope for a cure in his lifetime!

  4. Linda October 10, 2014 at 11:52 am #

    I haven’t seen it, probably won’t, because as you so eloquently say – it hits too close to home. You comment “It is an illness of loss, which leaves us to constantly measure what we used to do and can do no longer.” made me cry, a rare indulgence, because it caught me off guard and sums up my experience better than I ever could have. I see to be stuck in that purgatory of not being able to do what I used to be able to do and afraid to try new things because they will just be taken away too. Is it any wonder why so many of us struggle with depression. Statement, not a question.
    This is my first visit to your blog. I’m looking forward to reading more. Thanks for being a voice of understanding 🙂

  5. Bonnie Brumbaugh October 10, 2014 at 12:21 pm #

    There is no cure for MS. including the Wahl Protocol. Dr. Wahl went from running marathons to being unable to sit up or walk more than a few feet. She cam up with her diet (The Wahl Protocol). Diet together with PT, she can now ride a bike for a short distance. I am trying the Wahl Protocol. It is difficult to follow. However, I am able to get out of the house almost every day as opposed to 3 days per week.

    I am very grateful to Dr. Wahl for her work. She has improved the quality of my life. However, characterizing it as a cure is definitely and overstatement. It is a wonderful treatment just like many others.

  6. Larry Dunham October 10, 2014 at 3:36 pm #

    The seen of not being able to stand on the beach reminds me of my first symptom of MS was squatting to pick up some papers i dropped on the floor and having to pull my self up.
    I knew that something was wrong and I called my Dr and made an appointment right then and was diagnosed 5 months later with PPMS.

  7. Lori Batchelor October 10, 2014 at 5:01 pm #

    I was diagnosed with MS in 1990 following a few bouts of numbness and tingling. Naively, I thought I’d be one of the “lucky” ones who wouldn’t have any severe problems, but I was wrong. Several “attacks” started in 1992, leaving me with many lingering symptoms. I required an electric mobility aid (scooter) in 1993 and was never able to return to work. I became classified as secondary/progressive before any of the so-called disease modifying drugs came on the market and they were only for relapsing/remitting cases. No “approved” treatment for me!

    I have tried several “alternative” therapies: the Swank diet, Reiki, acupuncture, Feldenkrais, bovine myelin, massage, and, yes, bee stings.

    The only thing that has ever helped any of my MS symptoms, in a long-term way, was venous angioplasty for CCSVI in March, 2011. Overnight, my balance returned. My heat intolerance was eliminated. Drop-foot improved dramatically. My emotions stabilized, allowing me to kick my 16-year Prozac habit and I haven’t had one of my “MS headaches”, that I used to get almost weekly, since treatment. I am very active with swimming and Aquafit now, to keep my blood flowing. My EDSS (disability) score went from 6.5 to 4, which is supposedly not possible for someone with s/p MS but I proved them wrong!

    I think it is shameful that my country, Canada, abandoned me, refusing to let me try this simple, safe procedure when there was nothing else for me.

    Please see one of my before/after videos:
    MS Mobility Improvement
    http://www.youtube.com/watch?v=OQHFvp6WFNo&feature=youtu.be

  8. Kelly McFalls October 10, 2014 at 5:59 pm #

    I haven’t been able to bring myself to watch this movie yet. Mr. Cohen, I did read your book after I was diagnosed seven years ago however. I was heartened to see that you didn’t curl up and die after your diagnosis because when I was diagnosed, I wanted to do just that.

    I told my employer after I was diagnosed and got layed off. I was naive to a lot then.
    Of course they would have never said that was the reason but they gave me 12 months of severance for a job I’d been at for 12 months. All I had to do was to sign papers that I wouldn’t talk about it. It all worked out for them and me frankly.

    I agree that when you are hired and you have a chronic disease, you become the best employee you can. I have times though that I wonder if I still have “it” but I just keep working, thank goodness. I know I’m commenting on an older post, but your book was the first that I read after being diagnosed. It meant a lot to me and reminded me that I can do anything and to never give up. Thank you for that. Kel

  9. Mari October 11, 2014 at 1:36 am #

    I was diagnosed in 08 and remember fondly that moment when I just couldn’t get up. And when I watched the documentary I just cried and cried. I felt selfish, it felt like I wanted pity. I’d never felt that before but I knew I didn’t want to feel it again. I’m pregnant for the third time and despite the research MS can and will flare up. I almost want pity again but thanks to this documentary I can remind myself of the gift of family. Family and health is all we really want, even though it seems a fairy tale.

  10. Gladys October 11, 2014 at 7:54 am #

    It so heart wrenching to watch this. Jason is so young and so much life ahead of him. My husband has this same type of MS he was diagnosed 12 years ago he’s 64 now. He has gone from a happy out going to depressed man. We used to go motorcycle riding, boating & swimming, camping and traveling now he spends most of his day just sitting watching TV in his motorized wheel chair. He has lost almost all of his motor skills and is confined to his chair. I am his only care giver he won’t let anyone else help him. It’s really hard on me but I always try to keep my chin up for him. Cry when I’m alone. I’m 61 and had to give up my job to take care of my husband. My heart goes out to all the family’s that have a disabled family member to take care of.

  11. Ruth October 12, 2014 at 11:18 am #

    For those of you with supportive families, thank God daily for them. My husband couldn’t deal with the restrictions of MS. The “for better or worse, in sickness and in health” portion of our vows were set aside as he walked out to door. I face the illness now, alone in his hometown, without the means or ability to move closer to my extended family. For those of you who are supportive of your family, I applaud you.

    • Eric October 13, 2014 at 11:55 pm #

      Ruth

      I do not know why but I ant to reach out to you. I am on face Book Eric Gobble.
      Look for me. I have sec. pms.

      On disability and home bound but no one should go thru this alone.

  12. Tenice October 19, 2014 at 5:12 pm #

    This is a inspiration for me. I am only 19 and i was diagnosed with MS at the age of 16. No matter what the outcome is don’t give up. 🙂

  13. Rachel November 11, 2014 at 5:35 pm #

    Nobody wants to mention the PPMS people who chose to end their lives because they DID NOT want to live dependent, handicapped, degraded and isolated. It happens and they made a brave choice and had the right to do so. Everyone “fights” in a personal and different way.