Hey John,
I want to share a personal story with you. Flashback to 2017, many months before I became completely paralyzed by ALS. I still looked healthy. I had a limp and a leg brace, and I could no longer manage to hold both a drink and a plate of food at the same time. But I could still get around okay.
Then, in May 2017, I started feeling out of breath for the first time. The week after my initial diagnosis, my ability to inhale and breathe was 103% of what would be expected for a man my size and age. But by the spring, it had declined to 80%. As my diaphragm became weaker and weaker, the number would continue to fall.
This is the unrelenting rhythm of ALS, John. A new part of the body becomes weak, a new symptom appears, and a new task becomes difficult or downright impossible. In the ALS community, this series of physical declines is referred to (unironically), as “progression,” which is exactly the wrong way to describe what is happening. My disease is advancing, I am decaying, and yet we refer to the pace of my “progression.”
Eventually, I had to face a daunting choice: Get hooked up to a ventilator that would breathe for me, or let my breath become air. In September 2019, I went to the hospital for a tracheostomy. It was a heavy time for our family, but with this setup, I will be able to live for many more years.
The truth is that I'm incredibly lucky to have had trach surgery. Approximately 90% of Americans with ALS choose not to get a trach, because it requires 24-hour care — something that even good insurance plans don’t cover. That isn’t right, and it isn’t necessary. If you believe we need guaranteed single-payer health care for all Americans, add your name >>>
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Be A Hero believes that in the richest nation in the history of the world, everyone should be covered by guaranteed single-payer health care. Instead, we have a corrupt system where health care companies use their money to buy political power, and use that power to kill the people who can't afford to stay alive. Will you join us in the fight for health care justice and guaranteed single-payer health care for all Americans?
John, I am so fortunate to have 24-hour care at home, so I can see my two beautiful children grow up. I’m telling my story, because being in this movement gives me strength and purpose. The stakes for our country are too high, and my time remaining is too short.
Struggling by your side, together we can fight for health care justice and make guaranteed single-payer health care a reality in America. That is the power of solidarity — and that’s the power of Be A Hero. Add your name to join Be A Hero in the fight for health care justice and guaranteed single-payer health care.
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Thanks for reading,
Ady Barkan, Be A Hero via LeftNet
P.S. Check out this recent photo of me and little Baby Willow. She’s the sweetest baby in the whole world (but I might be biased). The right for everyone to have health care means they can live at home with the people they love. Join the fight for guaranteed single-payer health care.
Paid for by Be A Hero and not authorized by any candidate or candidate's committee.
