Monday, September 2, 2019

Effort 8 – Celebrating Labor Day?


For 30 days, I will share the joys, pains, and dirty little secrets of my life with multiple sclerosis. My goal is to find a reason to convince you to support/share my fight against MS. Please donate today: http://main.nationalmssociety.org/goto/eleanor.

This is Effort Number 8…

Do I deserve to celebrate Labor Day?

According to the US Department of Labor, Labor Day “constitute a yearly national tribute to the contributions workers have made to the strength, prosperity, and well-being of our country.”

Sometimes it’s hard to justify my contribution. September marks my third year since stepping out of the workforce on disability. Honestly, I understand the arguments in support of my status and the benefits I receive because of my diagnosis with multiple sclerosis. The labels which are applied to that status can ignite a fire of opinions, stigmas, and misconceptions. I’m guilty of many of the negative impressions applied, even to my own circumstance.

Disabled Veteran – because I was a soldier serving in the United States Army when diagnosed with MS, I am entitled to a lifetime of VA health care benefits to treat my disease. The military was not a cause of my disease (we don’t think so); they will continue to care for me and pay me a monthly stipend, nonetheless. Gratitude for my service to our country.

Long-Term Disability – my final employer had excellent health care benefits. Their benefits were one of the countless reasons I joined that incredible organization. Long-term disability applied if I met certain conditions which prevented me from being able to perform a “substantial” amount of work, as defined by the Social Security Administration. Those benefits include maintaining a portion of my pre-disability income as well as providing access to corporate healthcare and insurance coverage. The Social Security Administration's impairment listing manual (called the blue book) lists a number of impairments, both physical and mental, that will automatically qualify an individual for Social Security disability benefits (SSDI). MS is on the list.

These are the benefits I was entitled to when I joined the military and corporate workforce. Uneasy as I may occasionally feel, I remain proud that my decisions set me up for care if/when my health conditions deteriorated.

SSDI – on that note, as part of my long-term disability, it was a requirement that I apply for and receive Social Security disability insurance benefits to remain eligible. The normal application and evaluation process is over a year and a half. I was approved in two months. The SSDI benefits I received is not additional money but rather a US government payment that reduces my employer’s insurance company’s long-term disability payment. Translation: to receive any benefit, I must be on SSDI – a situation I don’t like. I believe in Social Security benefits. I believe those benefits should be available for Americans who truly need them. My company’s insurance and the US government worked at a different arrangement…

Medicare – on that note, as part of my SSDI, after two years, I was automatically enrolled in Medicare (Part A and Part B). I have regular insurance through my old company. I have secondary insurance through the US military (TRICARE benefit). I don’t need Medicare, nor do I want to pay the part B premiums for health care coverage. Personally, I would rather pay for my private healthcare benefits and leave the already strapped Medicare resources to those who need it. Another wonderful trick of our complex healthcare system is that if I declined Medicare part B coverage, I am ineligible for TRICARE benefits (that’s the simple answer, as to not bore you to death). So, to maintain the secondary insurance I have already earned, I must drop the private healthcare coverage I have already earned and pay for, then enroll in government-assisted Medicare.

I am a fortunate man. I have lifetime coverage from the Department of Veterans Affairs in treatment of my multiple sclerosis at $0 cost. I have a variety of healthcare coverage options, both primary and secondary. My out-of-pocket costs are minimal, and my coverage is significant. I still have great dental and life insurance options (both military and private employer). I am paid by the insurance company of my old job. I am paid by U.S. Army and by the Department of Veterans Affairs.

[That’s a lot of great benefits, Kevin!]

Yes, it is, Inside Voice.

[What your job?]

Having multiple sclerosis.

***

It’s hard to feel like a contributing member of society, part of our outstanding workforce who have made to the strength, prosperity, and well-being of our country. In theory, I could do absolutely nothing and still receive all those same benefits. According to someone, I’ve earned it. But I don’t feel that way. I need to do something that justifies the benefits I receive in the life I live, especially while so many others struggle with that the care they need. In my families of MS warriors and disabled veterans, those sentiments are not unique to just me.

So, what is my job now? I have quite a few, actually.

My Health and Conditioning – I receive health benefits because I have multiple sclerosis. The US Army, the Department of Veterans Affairs, The Standard Insurance Company, and Avangrid Renewables have committed to taking care of me in hopes that I can get better and make an impact. I owe it to myself. As my paid corporate sponsors, I owe it to them. That’s my primary job. Exercise and conditioning, diet and nutrition, and mental health — those are the three key areas I can impact directly on my ongoing struggles with secondary progressive multiple sclerosis. That, in and of itself, is a full-time job. For the first time in years, I see an uptick in the evaluation and prognosis of my symptoms.

My fundraising and work with the National MS Society – 20 years ago, because of an organization that was founded solely to help others suffering from multiple sclerosis, I was a direct beneficiary of the Society’s programs. They supported me without asking for a nickel in return. Soon after I was diagnosed in 1999, and during the nine additional months I remained overseas in Korea, I spoke with outreach members of the NMSS. They taught me what multiple sclerosis was in terms of medical, social, economic, and personal factors I would face. They sent me on my way and never asked for anything in return. In 2003, I felt the urge to give back. Since my first ride in Pennsylvania, the creation of Team Amulet, and every ride afterward (New York, Delaware, Oregon, Washington), I have directly and indirectly raised over $750,000 for bike MS. That work continues…

I serve on the local board of the MS Society, influencing the planning and direction of those programs that will raise the support, awareness, and funds needed to find a cure and delete devastating effects of multiple sclerosis.

My Foundation NEVER STOP NEVER QUIT – our mission is to raise funds, support treatment, and promote awareness in the fight against multiple sclerosis. Regardless of the fundraising efforts, 100% of the net revenue generated by NEVER STOP NEVER QUIT supports larger/national organizations. Translation: we raise money for the National MS Society but to do not add any cost (I personally assume all expenses). We are a smaller, local nonprofit. We raise money in ways that are not convenient for a larger national organization (local fundraising events, publishing books, etc.).

My work with the Department of Veterans Affairs, MS Center of Excellence – I volunteer with the organization as they need. I write for the organization.

My Words – writing has become so much of what I am and how I express myself. As my body failed, my words grew stronger. I replaced what I could not do by telling stories. First, they were stories about what I did – then, they became stories about what I wanted – finally, they became stories about what I dream! My books are published under the NEVER STOP NEVER QUIT private foundation: I’m on disability. I cannot personally make a dime, even if I were to donate all the proceeds. The reality of the matter is that I have given way more books than I have come close to selling (purchased and given away at my expense). They are my words and my thank you for your donations; demonstrations of gratitude for those who helped me in the past; and symbols of motivation, reminding my brothers and sisters in this fight to Never Stop… Never Quit…

My Little Love – I am intentionally avoiding the cliché that Eleanor is my number one job. She is not. Ellie is my family, my life, My Little Love.

My Goal – I Love the 2015 Movie, Cinderella Man. In it, Russell Crowe plays Depression-era Boxer James J. Braddock. Injured earlier in his career, Braddock was forced to work as a day laborer during the Great Depression. One of his most emotional moments was when he had to go on welfare to feed his family. After reigniting his boxing career, the humble man went back to the welfare office with a bag of money – repayment for everything the government had given in his time of need. That’s a great story. I don’t know if I will show up with a bag of money, but I will do everything in my power to repay those who supported me without asking for a nickel in return.

I am a burden on family, friends, organizations, and agencies. My claim is not a negative label. Instead, the burden has many meanings: 
  • something that is carried: load
  • duty, responsibility
  • something oppressive or worrisome
  • the bearing of a load —usually used in the phrase beast of burden
  • capacity for carrying cargo


So, in terms of how I handle the burden of my life with sclerosis, the answer is simple. Yes. I deserve to celebrate Labor Day. I am having a wonderful time doing so, and I hope you are, as well.

The hope is my story will inspire your donation in this fight.

Because it is a fight.
The fight is not over and it won’t be over until a cure is found.
It will never stop…nor will we
It will never quit…nor will we
This is why we ride!

100% of the royalties earned from my books go to the National MS Society, to support our fight: http://neverstopneverquit.com/books

Never Stop… Never Quit…®
Kevin Byrne
Portland, OR

Never Stop… Never Quit… Reg. U.S. Pat. & Tm. Off.


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