Perspective: An Observation

"Tragedy is when I cut my finger. Comedy is when you walk into an open sewer and die." - Mel Brooks

Having ALS certainly doesn't give me a corner on perspective. But, over the seven plus years since my diagnosis, I've met many people who have been told they were going to die. Some are still here, others have, in fact, passed on. I can guarantee you that for each of them, a "terminal" diagnosis was a perspective changing event.

How receiving that news changes one's perspective varies by individual. Nature, nurture, life experience, training, personality, faith (or lack of), religion (different than faith), social status, etc., all play a role in shaping our individual perspective. Some people become more resilient, some crumble. Some accept the news with grace, go about getting their affairs in order, some begin bull riding, cliff diving and savoring life. Still others just take each day as it comes. 

Social media has become a wonderful platform for an increasingly self indulgent world. Sure, it can keep friends and relatives separated by distance more connected. Just this morning I sent a birthday greeting to my Cousin in Indiana. However, more and more often, social media has become a platform for the emotionally needy to whine. There. I said it. Get a grip, folks. More accurately, get some perspective.

We're whining about the snow, the cold weather, our kids, our spouse, our best friend, our job, the President and how tired we are. Meanwhile, in the Middle East, a 6 year old girl is having her head cut off by a stranger, there are people in Africa dying of HIV and there's a homeless guy in New York City who would take your "crappy" job in a heartbeat. There are people in North Korea picking thru garbage dumps for food because their "President" isn't held accountable to anyone. There's a 10 year old girl who has been sold into the sex trade somewhere.

When I see social media whiners, it makes me sad - because it usually comes from good people. People who are better than what they are Tweeting, positing or Instagramming. Social media has made it far too easy to thoughtlessly tap out our emotions on our phones and hit "Send". I can't help but believe how often we'd post differently if there was an hour delay before our posts went through, followed by a display of what we wrote with an "Are you sure you want to post this?" pop up.

What a world we could make if, for every selfie, for every whining post about what previous generations simply considered to be the trivialities of life, we substituted a genuine act of kindness for others. If we focused on others instead of ourselves. 

Everyone's entitled to a bad day. No question about it. But do we really need to share every little bump in the road with the world? Norman Vincent Peale said: "The more you lose yourself in something bigger than yourself, the more energy you will have." I don't now about you, but I can always use more energy. The question is, how do we choose to spend it? Whining, or lifting someone else up?

I joked with our visiting nurse last week that I was going to have bumper stickers made that read: "Perspective - Get Some". I think I really will.

Now, go surprise somebody with an act of random, unexpected kindness. Guaranteed, you won't feel like complaining after.

This November 13th: NOT Just Another Day

So, The Hope-JG Foundation is hosting what promises to be an amazing event on Thursday, November 13th. We are blessed to host the folks from HARK and their documentary "Hope on the Horizon". To view the trailer and get ticket info, go to: www.hope-JG.org

Linda was setting up my morning tube feed a few days ago. She has pattern that carries her between my "Starship Enterprise" setup in the living room and the kitchen. On this day, headed for the kitchen, she stopped in her tracks and said "You realize what November 13th is, don't you?" To which I replied with my typical stupid male, wide eyed look and said "Umm, no." She smiled her irresistible smile and said "It's the day you were diagnosed with ALS seven years ago." And we both fought back tears and then started to smile again. You see, our minds both connect November 13th to the date my Dad died - 8 years ago on November 13th.

Now, I miss my Dad desperately. But, I'm convinced his handling of his own handicap (he had one of the first artificial hip replacements while in the service. I never knew him without a cane), with such grace and tenacity, prepared me for this long strange trip my family is on.

As for my diagnosis on that date, I don't look at that as anything other than a triumphant date. Those of you who know us are tired of hearing how we refused to accept the prognosis of 2 - 5 years (later to be shortened to 18 - 24 months by the second opinion Doctor in Boston). 

So, you ask, what does this Gregorian coincidence have to do with the Event this Thursday? Here's my take: Most people would look at the events of November 13th, 2006/2007 and think they were horrendous anniversary days no one would want to get out of bed for. I look at it differently. (Surprise.)

My Dad lived a full life and left a living legacy in not just his two sons, but in literally thousands of students and athletes he touched in his 30+ years of teaching and coaching, many of whom became researchers, nurses and physicians. He was a living example of Steve Gleason's motto, "No White Flags". As for the day of my diagnosis, given the 18 - 24 month timeframe handed to Linda and I a month later, it's a date for celebration, not despair, seven years later.

And that's exactly what this Thursday will be, a celebration of the lives of some our ALS heroes and those with ALS who have passed on but left their own unique and indelible mark on their families and the world. More importantly, it will be a celebration of life, with and without ALS. "Hope on the Horizon" is the perfect film to reinforce our willingness to honor families with ALS, past, present and future. It's also a perfect compliment to our mission to see an ALS/MS Residence here in Maine. It's the future and the future starts Thursday night when the doors open at 6:45 PM . If you can't join us, will you share this with a friend?

www.hope-JG.org

Stephen Hawking, ALS and the Importance of Having a Mission

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