Walk this Way

8 09 2011
Often Awesome Episode 16 ~ Walk the Way

“There’s just a lot of things in our laws and our health care that need to be changed…so that when people face things like this (ALS) they can do it with dignity…and not be robbed of the things they love in their life.” – Pat Szafranski (Kaylan’s mom)

This statement strikes at the core of what I feel about what is going on in this public war with ALS, as well as in the hope that I have for becoming a nurse: I want to insure and protect that dignity, that independence.  To have your movement robbed by a disease is tragic enough, to have it steal your voice and literally the food from your mouth is a horror, to take the air from your lungs – a nightmare.  To have to fight the disease and at the same time fight for your identity when all these physical things start eroding and to have your family, friends, and community begin to become your voice, your movement, and your expression is another deep act that is not easy and requires a balance of self-acceptance and self love; to recognize that you are taken care of and cherished to be so advocated and supported.  My mother was ever struggling with the loss of independence and with the gratefulness of having a family of support – to find that balance and have a fierce purpose to your life in spite of this disease taking away your basic means – its humbling to witness.  My mother’s defiance and purpose was to continue to take care of us and to remind us to love.  Tim managed to raise an army and through brave deeds and voice, managed to illustrate for us all how to fight defiantly and to live for love.

Its difficult when laws, governments, and organizations protect themselves at the cost of those gifts of humanity, by denying basic rights (like getting married), benefits, or health care coverage.  With a disease that by time of diagnosis can already have compromised a persons ability to speak, to move, to eat, and to provide for themselves, it can be too little, too late.

My family in many ways was very lucky.  They discovered and diagnosed my mother in about a year of evaluation; quick in some cases.  We seemed ideally positioned as well, with my family home being situated less than 10 miles from the Central and Southern Ohio ALS chapters headquarters and less than 3 miles from a company that supplied equipment; we were also less than 6 miles from the hospital that had a hospice center.

The Central and Southern Ohio ALS chapters was with us, helping my mother and father get the supplies, advice, nursing care, assisting devices, information…the support was constant provided the tools that made a difference in the quality of my mother’s life.  They stayed in contact with us afterwards and I owe a debt of gratitude for the compassionate and enthusiastic ear of Marlin Seymour, the chapters director, for all her assistance in helping us with my mother’s care, but also for her kind words when she passed, and also for her help with my projects to make things like the Iron Horse Challenge a reality.

Marlin, was not so fortunate herself.  She knows the value of what the ALSA chapters can provide.  She is brave and honest about how hard it was for her and her family when they were savaged by ALS.  Where they were, they weren’t even aware of the ALSA; there was no chapter where they lived.  They didn’t have the support or supplies, the facilities, the nurses or equipment.  Her family’s fight was brutal and very alone.  She knows the value of community support, awareness, and action.  She has made it her job to make sure no one has to go through what her family went through.  Its personal.

There are so many fronts in the fight against ALS and all of them have an importance and a role.  I can’t help but have an opinion, but I also recognize that opinion is skewed: I am a survivor of losing my mother to ALS. I’m not a PALS.  I’m not a person living with it.  I have a deep empathy for all sides of the War and so I fight it from every angle I can.

So despite the politics and the struggle to debate cure vs. diagnosis vs. therapy vs. care/nursing/quality of life vs. science  – I know we need them all.

The Walks to Defeat ALS are a critical part of the local communities care and for many families the first link to an awareness of this disease and a touch stone for equipment and logistics.  The Walks supply the money and visibility to help the individual chapters operate, to continue to offer the practical day to day information and logistics that provide for that first assurance that quality of life and dignity can be and will be defended.  It is one of the many reasons why I built the Iron Horse Challenge around the local area walks and extended it to connect each town with the message: We are all in this together and no distance is too great, no step too far, that we won’t try and make sure that life and its quality is defended and provided for.

I may have my personal connections, like wanted to honor the IHC with names like the “Often Awesome Express” (Columbus – Dayton/Fairborn) or celebrate the amazing journey of Columbus – Cincinnati with “The Blazeman express” – these people inspire me, they humble me, they have made my life better because of what they have done; they make me want to do more and believe that I can.  But this doesn’t take from the Walks themselves.  I might giggle to have biked 157 miles to Canton, OH to participate in the Northern Ohio ALS chapters Walks to Defeat ALS; a mere 1.5 mile walk – but I know the journey was a vehicle to the Walk itself.  I couldn’t have done it without the passion of the people who volunteer and work to make this event what it is every year.

Its also through the walks that I meet amazing people like Helena Curtis.

I met Helena in 2009, when one slightly overcast, misty September the ALSWARRIOR IHC riders came rolling in to do the walks.  Helena at one point asked us if she could take a team pic and we gratefully gathered together.  It was a seemingly subtle moment, all of the riders tired and happy to be off the bikes, distracted by the flow of the walk and the flagging energy in their limbs.  It was a treat to be recognized and for my part I was pleased that our team could be noted for what we had managed to do.  I never knew that such a small act and in such a brief moment would have the impact of bringing an amazing person into my life.

Helena is without a doubt, one of the people whose simple acts, make the IHC and my actions to support this fight on ALS seem like they make a difference.  She is a follower on the Iron Horse Challenge page on facebook and is usually one of the few people who responds consistently, offering “thumbs up” and keeping my spirits in the saddle.  When my energy is lagging and my pessimism is running high, her simple encouragement reminds me to be grateful and to know that simple acts of appreciation go a long way.  I cherish her like few of my IHC followers if for nothing else than her fighting spirit and her willingness to take that step; to make silence not ok.  I am without a doubt very grateful for her and for the Walks to have allowed me a chance to meets such wonderful people.

I asked Helena recently how she came to this fight and what her experience with ALS was (I know she is a cancer fighter/survivor and that fight is very personal to her).  She kindly sent me these words that I would like to share with you:

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Why do I fight for ALS…

 

As a young adult I was never aware of what ALS was or what it could do, I was clueless.  I had no idea who it affected or how heinous it was when it strikes, until I met Morrie Schwartz in a book.  “Tuesdays with Morrie” was life changing for me.  I was instantly terrified and saddened by the affects this terrible disease has on a person’s body and soul.  To know that a person is ravaged by the disease and maintains mental faculties throughout just became a burnt concept in my mind.  Independence is completely robbed from the body, one function at a time.

 

Shortly after I read this book and did some more research on Lou Gehrig’s Disease a family friend named Jessica, lost her father due to a long battle with ALS.  She was just a young teenager and she was witness to the loss of her father.  My heart was absolutely broken, it was one thing to know of the disease but once it touched my life so closely, I had to find a way to make a change for other people like her.  I did what anyone would do, I searched for the ALS Association and signed up for the Dayton Walk.  I volunteered that year, wrapping hot dog after hot dog for the walkers.  I was moved to tears by the speakers, but mostly the people I was blessed to work with, who had lost loved ones and were more determined than anyone to beat this disease with research funds.  I kept thinking, this is crazy, why am I here?  People kept asking me and all I could answer was that I cared.  Then I met Shawn Schulte.  He and his group of bicyclists happened into the pavilion where I was working and I noted their shirts boldly stated, “Iron Horse Challenge”.  I approached the group with my camera and snapped a photo that would change my life once again.  Over the next year, I followed Shawn’s dedication and love for his mother who he had lost to ALS.  He lives, breathes and sleeps the fight for a cure.  He never stops and I believe, will never give up.  He blogs,holds events even offers prizes for those that assist him with donating to the cause.  Every time I think my life is difficult, I go to his Facebook page and just take a long look at his photo as a small boy with his mother…then I remember why I care.  She is watching him swing and all the love a mother could possess shines in her face.  It is like Shawn says, “This is what we lose to ALS.”  I am motivated to work towards the day that no other child has to say goodbye to a parent because of ALS.  No more lost mothers or fathers…no more grieving Shawns.

~ thank you Helena…You inspire me to keep moving, to keep doing my best, and to stay grateful and patient.

One of the many gifts that Walking to Defeat can offer: unexpected friends.

Walk because you Can!

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