We watched the PBS show Hawking this week (it's now on. Netflix). The show chronicles his personal life. The show is centered around his struggle with ALS, in tandem with his rise to notoriety in the scientific community and celebrity in the public eye. The movie is narrated by Hawking himself in his recognizable synthesized voice.
In the show, Hawking makes several observations which Linda and I (and I'm sure thousands of pALS who have preceded us) have made since my diagnosis in 2007. Hawking says dealing with the effects of ALS, in some ways, is easier for him than for his family. Very true. I have the "luxury" of being forced to give up my household responsibilities. The not so obvious down side to outside observers is the strain it puts on the rest of the family. Linda has learned to do "man stuff" to the point where, for Christmas this year I bought her a purple tool kit - and she liked it (or pretended to). I, on the other hand, feel a sense of frustration and sadness every time she and/or Matt take on a task that I should be doing. Hawking's point was that, being forced to sacrifice the things which make for a normal life, gives one time to observe and think. It's what you choose to think about that matters.
The logical extension of Hawking's observation about having nothing to but think (and remember except in rare exceptions ALS leaves the mind intact) was that having goals and remaining active have been crucial to his survival. Hawking was 71 when this movie was produced. He was 21 when he was diagnosed. His goal was to become a world famous Cosmologist, a goal he achieved with his first book.
Certainly no comparison to Mr. Hawking's achievement, but in the seven years I've lived with disease he's proven to be absolutely correct again. I did my best for the first two years after my diagnosis to remain active in my fledgling business. After I officially retired, and while I was physically less cumbersome to move around and care for, the family took day trips, visits to Mass General for clinic were turned into overnight family trips, I wrote a LOT and we pretty much had fun, within my physical limitations, which were fewer at the time.
Having a goal and purpose changed in the Spring of 2013, when we heard about this guy named Steve Saling. We "met" Steve on Facebook. After reading about this facility that was named after him and subsequently reading local newspaper column about a lady with ALS who had been in a local hospital for over a year, curiosity got the better of me and we arranged a visit. You see, this ALS patient was in the hospital because there is no long term care facility In Maine equipped to care for a fully ventilator dependent ALS patient.
I had a dream about this lady and her family that I'm convinced came from God. Some would say it was just on my mind. Regardless, I woke from a sound sleep weeping and determined that no ALS family should go through what this lady's family were going through. I made my living for the last 12 years of my career getting clients to question the status quo in their businesses. Now I was asking: "Why is this happening to this family and the powers that be are just accepting it?".
So a group of friends and family go with Linda and I to The Leonard Florence Center for Living in Chelsea, MA and spend an amazing afternoon with Barry Berman, CEO of the Center and Steve Saling himself. They gave a tour of the entire facility, the majority of which is Elder Housing. The Steve Saling ALS/ MS Residence is a 10 patient facility housed inside The Leonard Florence Center and I think it's safe to say we were all blown away at the end of the day.
The ALS Residence concept is built around the premise that, until there's a cure technology can enhance and lengthen the lives of patients with ALS and MS patients...correction: residents. Even ones with only the ability to work a specialized speech device with their eyes, have complete independence to move throughout the building. Because of the building's technological infrastructure residents can open doors, operate elevators, lift shades and turn on lights, their TV's and stereos.
Every room is decorated to the resident's taste, enhancing the feeling that this is a home, not a "facility". There is commercial grade kitchen in the center of the residence with special cook tops which never get hot to the touch. There is a central living room intentionally designed with no TV to encourage interaction between residents and between residents and guests.
So, you ask, what does this have to do with Stephen Hawking? Well, first of all, Mr. Hawking made a phone call to,Steve Saling on the day the Saling Residence opened. He said: "I look forward to living centers such as this becoming a standard for the world."
Interesting choice of words - living center. Not a warehouse where people are ignored because they are paralyzed. Not a place to wait to die because, after all, the doctor said you have 2 - 5 years so, max out your credit cards and get your affairs in order (that's what we were told). And certainly not a place without Hope (you knew I couldn't post without using that word, didn't you?)
The Hope-JG Foundation intends to advocate, pester, beg, demand, fundraise, shake hands, blog, Twit, Facebook and shout from the mountain tops until there is an ALS/MS Residence in Maine. It's needed and, with the increased awareness of ALS thanks to the Ice Bucket Challenge, the time is now.
If you want to know more about our mission and the ALS/MS Residence concept, go to our website: http://www.hope-jg.org/#!projects/c21kz. (Be sure to watch the videos).
For more about the ALS/MS Residence initiative visit: www.alsri.org
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