Tuesday, August 12, 2014

When I Walk: What Living With Multiple Sclerosis Is Like

Think about what you did to get ready this morning. 

If you are able-bodied that is a relatively simple thing right?  To get out of bed, use the bathroom, get showered, get dressed eat some breakfast and then get out and go somewhere else. 

But what is not just getting ready but living life like for people with disabilities?

Jason DaSilva gives a very personal insight of what it is like to have a progressive disability as he documents his life with multiple sclerosis in the documentary “when I walk”. 

At age 25, DaSilva was a successful independent filmmaker who after noticing his vision was blurry and he was walking funny he gets evaluated and is diagnosed with primary-progressive multiple sclerosis. Being a filmmaker he turns the camera on himself and makes a documentary showing the very personal evolution of how his life as he knew it was “turned on its head”. He filmed every day over the span of 7 years. The result is a documentary that captures the emotions, feelings, and the human experience as DaSilva shares the ups and downs of living with a progressive illness. There are the struggles of navigating physical challenges, desperately trying every possible treatment, dealing with the emotions of not being able to do the work he loves to do and the frustration of his progressive dependency on others. 

We witness how over the span of just a few years with multiple sclerosis DaSilva goes from using a cane, to using a rollator, a wheelchair and a scooter. A progression that a tearful DaSilva tells us he didn’t think would happen so fast.

Here are some quotes from parts that touched me of the documentary: 

 ● DaSilva shares with us his thoughts and fears
“It makes me feel nervous about what the future will hold” “I walk around like a normal person and but inside my body is at war” [the immune system fighting the nervous system]
●Meeting, dating and marrying Alice Cook
“My mom said to go to a MS support group. I met a girl there her name is Alice, her mom has MS. I got her number so we can ‘talk about MS’ ”. Jason DaSilva
DaSilva: “Don’t you wish you were with someone who was able bodied?” Cook: “Yes but I wish it was you who was able-bodied.”
●The burdens and challenges of being a caregiver
“I feel really guilty [about going on a trip alone] but I’m on the verge of insanity and I have to leave for my sake. I have been taking care of you for like two years straight.” Alice Cook
“ You take like twenty pills all at once and they all interact with each other” Marianne D'Souza (Jason DaSilva’s mother)
●The uncertainties of life
"It’s hard to know where our stories are going while they are being written. That is the mystery of faith it’s always a surprise." Jason Dasilva
So remember how I started this blog-post with the thought about what it takes to get around for someone with disability? DaSilva actually did an experiment comparing the time it takes an able-bodied person to get from Brooklyn to New York using public transportation and blogged about it in the NY times. He also created AXSMAP a crowd-sourced tool for sharing the wheelchair accessibility of businesses.

Ready to check out the film for yourself?  Make sure you have facial tissues handy.


If you are interested you can purchase the when I walk film from several sources.

If you are in the US you can  stream it from PBS Through August 22, 2014.
 


 

Did you watch the film and want some extras?


Dr. Jeanette Ross will be hosting a Tweetchat on Chronic Illness and the role of hospice and palliative medicine Wednesday August 12th at 9p ET.  Search for #hpm on Twitter and join the conversation.

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Photo Credit: Director Jason DaSilva takes a walk in Goa, India. From WHEN I WALK, a Long Shot Factory Release 2013 

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