Reblog: Divorce or Death, a Real Life Decision

THE BLOG 

07/26/2016 09:51 pm ET Updated Dec 06, 2017

Divorce or Death, a Real Life Decision

JAY SMITH

When I was diagnosed with ALS, I was given two years to live. Two and a half years later here I am typing this article using my eyes, while being fed through a tube in my stomach and wearing a breathing mask to give my diaphragm a break. I am one of the lucky ones, and I’m thankful for that.

I still think about how awesome it would be to be sitting at bar in a divey Mexican restaurant with my wife, shoveling way too many salty chips and chasing them down with cheap margaritas. I’d be happier than a truck driver after an eight-hour stretch to be able to scratch my balls again, but I digress. You might be surprised that the hardest thing about ALS isn’t trying to vigorously type in a witty, timely jab with eyes when your buddy does something stupid. It is the cost to stay alive.

When I was diagnosed I came across other patients, like Eric Valor, who through mechanical ventilation has been able to stay alive for over ten years. Then there’s Augie Nieto who has been very actively fighting this beast for twelve years and is the current Chairman of the board at ALS.net. And of course, we all know Stephen Hawking, who I like to tell people I have the same disease as to make me seem smarter. I mean I bet we both share the burning desire to scratch our balls, so there’s that.

It’s estimated that the care for an ALS patient is over $200,000 a year. I ran my own company for ten years and while I always chose a new hire over a pay raise, I was able to bring in enough to convince my wife to “give it another year.” I put away a few thousand dollars each year into my retirement and paid my fair share into social security, both as an employee and employer. So when I could no longer work because of ALS, I applied for social security disability and Medicare. When I found out that I would only collect around $20,000 a year we thought, okay my wife will go back to work and Medicare will cover the medical expenses. I was wrong, almost dead wrong.

I now require a full time caretaker while my wife is at work, which is not covered by insurance. As my breathing continues to decline, I can extend my life for a very long time with a tracheotomy and ventilator, but at what cost? I will require 24-hour care, more sophisticated technology, not to mention a $30,000 used wheelchair-accessible minivan, none of which are covered by Medicare. There are government programs to help cover these costs, but not for middle class families. So my choices are to give up everything and declare bankruptcy, divorce my wife, or just accept death.

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Fellow ALS patient Eric Valor describes the cost of staying alive, “First and foremost, it cost me my marriage. I lost my house and all my savings. I am now destitute, living solely on Social Security, most of which goes to partially pay for my 24/7 care team. The majority of that bill is picked up by Medicaid (not Medicare), for which I must have no assets in order to qualify. ALS took me from a top 10% wage earner to below poverty level.”

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Catherine Scott, the mother of Anthony Carbajal whose 2014 Ice Bucket Challenge videohelped it become a viral sensation, and who also shares the same disease as her son, explains the financial deviation. “It takes everything. After paying all of our monthly obligations it takes every single discretionary dollar we have left to keep me at home by paying for a caretaker out of our own pockets…and even then, we fall short about $1,200 per month.” Catherine, whose ability to breathe on her own is coming to an end will also be faced with my decision.

In Japan the life expectancy for someone with ALS is much longer than in the US. Not because of their fish centered diets or their awesome Kung Fu movies, but because over 90% opt for a tracheotomy to dramatically extend their lives compared to the only 5% here in the US. It simply comes down to costs. The Japanese government provides support for its citizens with this devastating disease and ours doesn’t. As the most advanced country in the world we have to do better. A 38 year old father of two who ran his own business I should be penalized by being middle class, but I am. I shouldn’t have to decide between divorce and death, but I have to.

1.30.18 Three is my Favorite Numba

Yesterday was a big day for a couple of reasons:

1. Round 5 of Radicava Ridiculousness is rockin right along – 4 days down, zero excitement to report.

2. It’s officially my last week of Short Term Disability and I celebrated by sleeping until 2PM – homegirl was sleepy.

3. Our house is finally getting worked on which means we’re that much closer to sanity, and yes, I slept through it.

4. Y’all sold out Super Bowl Squares board number 2, hooray! Board 3 is up – $10 per square, 2 square minimum – let’s sell it out, hurry! Tell a friend!

Thanks for celebrating with us! Turning 31 on Super Bowl Sunday is going to be exciting!

5. January is coming to a close, 2018 is working out to be a fun year of firsts, and SunnyStrong has some awesome things in store for all of our favorite knuckleheads!

1.26.18 ‘Just remember you have every right to be here’

“Maybe that memory – plus the data – would give neurologists more confidence to launch into those tough conversations, and we patients wouldn’t have to wait as long to be diagnosed. Or maybe their empathy would empower us to make decisions earlier, before they have to step in and force one when the situation has become desperate.”

via ‘Just remember you have every right to be here’

1.24.18 Squares for Sale!

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Fun Fact: Every 7 years Sunny’s birthday falls on Super Bowl Sunday!

This year we’re combining two of America’s favorite things: Gambling and Charity! The first board sold so quickly, that we opened a second board!

Each square is $10, 50% of the total will be donated to SunnyStrong and the other 50% divided evenly to each of the 4 Quarter winners. If all 100 squares are sold, it will be $1000 total – $500 to SunnyStrong – $125 each Quarter winner.

Game Rules:

  • Sales will continue until all squares are sold or kickoff on Sunday, February 4th – whichever comes first.
  • All sales will take place online through the SunnyStrong Store and winnings will be paid via paypal on Monday, February 5th.
  • If all squares are not sold, payouts will be announced at time of kickoff on 2/4.
  • If an unsold square wins a quarter, the next Quarter winner gets 50% of the previous Quarter winnings and 50% goes to SunnyStrong.
  • Column (Away Team) and Row (Home Team) numbers will be drawn following squares sellout or kickoff on 2/4 (whichever comes first) and game boards will be available for viewing at that time at SunnyStrong.com
    • Throughout the sales window, the board will be updated as frequently as possible.
  • Quarter winners will be determined at the end of the 1st quarter, 2nd quarter, 3rd quarter, and Final Game score.
  • Quarter winners are determined by looking at the last number in each teams’ score, and then matching those numbers on the grid and seeing which square intersects those two numbers.
  • Any discrepancies or disputes will be determined by his almighty highness,Thomas Abbott.

Reblog: Cannabis Looks Promising for Improved Quality of Life

via Cannabis Looks Promising for Improved Quality of Life

My two major takeaways from this article:

  •  Their goal was to bring patients together with researchers to ask questions and share information, and increase the dissemination of ALS research information in a patient’s “voice”.
  • 91% of those using cannabis said it improved their quality of life by decreasing anxiety, stress, drooling and depression.  They had more energy to complete tasks, less fatigue, they slept better and had decreased insomnia. Patients even experienced increased intimacy and sex drive.  60% said cannabis helped them cope with ALS and its progression.  Ms Ryan said these findings were as important to them as the physical results.

Not trying to start a heated discussion or impress my personal beliefs on you (though I bet they are different than you’re assuming), just pointing out that even if it was bungee jumping that returns these kinds of results – 91% of a study of 500 ALS patients agreed that something improved their quality of life – that’s huge.

1.20.18 Three Years Ago Today

January 20, 2015 is a day that changed my life in so many ways. Yes, I’d give it back if given the chance because ALS sucks, but hear me when I say that not everything that it has brought into my life has been bad.

I’m busy, you know it, I know it, ALS fights it, but at the end of the day it’s still true. I chose to slow down and celebrate this day because there will be harder days ahead, and why on earth wouldn’t you chose celebration? It’s where the cake is (hopefully) and smiles and hugs – celebration is life.

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Ain’t that the truth? Today, I celebrate. Today, I seek inspiration. Today, I love. What have I always asked of you? Hug me as soon as you can and love me through this.

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Happy year 3 of kick’n ass and takin’ names <3! Thank you for loving me, us, through this. Thank you for being our home, our support system, our foundation. Thank you for dancing this dance with me.

“Home is watching the moon rise over the open, sleeping land and having someone you can call to the window, so you can look together. Home is where you dance with others, and dancing is life.” Stephen King, 11.22.63