11.26.18 Sustaining the Hope of Survival

this is from my very wisdomous friend, Beth:

“With ALS time is my most formidable adversary. Everyday is a battle for productive waking hours. Forcing yourself out of bed in the morning and fending off the urge to return to it by carefully balancing high energy activities like shooting photos with passive ones like long leisurely lunches at outdoor cafes. Every year is a war against your body. Your muscles might be the obvious casualty but the true damage comes from threats to your infrastructure through depression and loneliness: This requires you to shut out the pain and grief to sustain the hope of survival and that one day there will be a treatment to eradicate your suffering. That’s why I no longer keep to a calendar or watch the clock. I don’t live by a schedule but in the moment. I don’t count down the minutes until I’m a completely paralyzed and a prisoner in my own body. I add up the ones that I can still walk, pet my dog (even if it’s with my foot), tell my family I love them with my own voice and breathe without a machine. So suck it Father Time 😜….inspired by good friend @carbajalphoto #kissmyals #fuckals”

This struck close to my heart, it’s been a rough and tough couple of weeks in my little world. I hate ALS. I hate that it’s taking my friends away from us, from their families. What happens when a child loses their mother? What do you do when your dad is gone, suddenly? Is it easier knowing how you’re going to die? Easier for who?

This is me, doing everything I can to Sustain the Hope of Survival because the alternative will undoubtedly kill me.

Last week I shared what I was thankful for, and this post is all about what I hate. I haven’t found the words to describe this ache in my heart, but these two wonderful people deserve my praise and their families our prayers. I hate ALS. I hate that Mark and Sarah are just gone. I hate ALS.

Mark Graham

Kenneth and I saw Mark and Rowena just a week ago. He was happy, funny, and wonderfully Mark. We shared many clinic dates and were making plans to attend the one in February together. Mark encouraged me, always.

Mark’s Wife, Rowena Graham Wrote on 11.19.18:

Such a sad day for the world yesterday as one of the most caring & loving people left us.

Mark Graham passed away early Sunday morning from ALS.

I was so fortunate to have had 28 year amazing years of fun & adventure with Mark. I was always in awe of the love & compassion he showered on Aimee Graham, Kelly Graham & myself, along with being dedicated to the game of Ultimate Frisbee through coaching, volunteering & growing the sport.

I want to thank each & every person that touched Mark’s life, especially in the last 3 years of his journey with ALS. You all made a huge impact throughout his fight with ALS.

We miss him with all our hearts & know that he will be watching over us from the stars.

Love you forever Mark Graham.

#Livinginthelimelight

#forevermarchinwithmark

Sarah is one of my favorite bloggers, I’ve shared her posts many, many times. This one from Her 40th birthday, only 8 days before she passed, was perfectly Sarah. She welcomed me with open, unfortunate arms into this sucky club. Sarah is one of the most powerful women I have ever had the pleasure of knowing

Sarah Coglianese

From the family of Sarah Coglianese on 11.12.18

To our beloved Speed4Sarah community:

With heavy hearts we share that Sarah passed away peacefully this morning, with her family. There is a void in our hearts that will never be filled but also an amazing little girl who will forever carry on her beautiful mother’s legacy.

We have enormous gratitude for the strength of the Speed4Sarah community. We will continue to honor Sarah’s courageous and unyielding approach to bringing awareness to, and ultimately a cure for, this devastating disease.

Memorial services will take place in San Francisco and Chicago – we will update this page with that information in the coming days, as plans are finalized.

In lieu of flowers, donations can be made to ALSTDI.

With all our love and gratitude,

Sarah’s family

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