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!
Please
donate today: http://main.nationalmssociety.org/goto/eleanor
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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