The last 2 days I’ve watched this video a dozen times, each time thinking about waking up on Nov 4th.
This cycle led to a thread and ask: please share this thread with any undecided voter or D thinking about not voting. It may not sway them, but our future is worth the shot. /1
Let me step back for a minute. In 2008, I met my wife working on the Obama/Biden campaign. I was 28, living on fast food and the sense that I was bending the arc of history.
At 30 we were both working in the White House.
At 33 we moved to Chicago, leaving politics behind. /2
She ran education non-profits. Me, a federal prosecutor focused on cases involving the city’s most violent gangs.
By 37 we had 2 beautiful little girls. I could not have asked for more.
Then, out of the blue, I was diagnosed with ALS and given 6 months to live. /3
After a period of soul searching and research we decided to dedicate ourselves to the task of making ALS a “formerly terminal disease.”
At that time I had no social media accounts, but we had a community around us that believed in making the impossible real. /4
Over the last 3 years we have waged war on ALS.
As we fought I tried to stay outside of the political fray as ALS doesn’t care about your politics and as I was working with passionate advocates and politicians across the political spectrum. /5
Last weekend my former boss retweeted me. Reading the replies brought me to tears. ALS has weakened my voice and legs so I can’t phone bank or knock doors. But I can share the story behind the tweet in the hope it brings others to vote. /6
So who am I? I one of the 130 million Americans with a pre-existing conditions. In the tweet I’m getting infused with a drug that costs $140,000 a year and at best will extend my life by months.
I have a terminal illness, yet I believe I will be among its first survivors. /7
I have lived the last 8 months trapped in my house, family in a bubble, as catching COVID would likely kill me.
Every day of this quarantine I have gotten up to fight to remake our health care system for those who like me were told there was no hope, get prepared to die. /8
I am a lawyer who has had to become a self-taught expert in medicine and science to take on this system.
I am a father, a husband, a son—I am an ordinary person thrust into action by a diagnosis I hope you have no experience with nor ever will. /9
I voted for Joe because of my 130 million fellow Americans with pre-existing conditions who have lived in constant fear these last 4 years of losing their insurance.
I voted for Joe because he has committed to pushing for $50 billion in funding to fight ALS and beyond. /10
Because he understands that curing Alzheimer’s, Parkinson’s and ALS—which touch nearly every American family—requires bold action now. A change from this White House which has ignored pleas from the ALS community for years.
Because he believes in science. And wearing a mask. /11
Because I want my daughters to inherit a world where empathy, tolerance, equality, decency, hope and opportunity for all are the norm not the exception.
I could go on but think you get my point: I voted FOR Joe, FOR Kamala, FOR hope, and I am humbled to have done so. /12
Voting is the one time we, the average citizen, have power over those who represent us. It has become cliched to say elections have consequences, but they do.
Which is why I spent over an hour typing this thread on my phone with just the thumb on my right hand. /13
If you already voted—thank you. If not, I hope you will. I hope you carry this thread with you and that your choices Tuesday reflect your hopes, not your fears. #VoteHopesNotFears /end
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Seven years ago today I married @sabrevaya on the Aegean Sea surrounded by the most amazing family and friends. We danced by the water until 3 am, alive in every sense of the word. This is us that day. That perfect, amazing day. /2
The four years that followed were amazing. We built a life in Chicago. Landed our dream jobs and had two beautiful daughters. Sandra pushed me in every way to enjoy life, just see below. I could not have written a better mid-30s if I tried. /3
I could not sleep last night so I stared into the darkness trying to process the last few days. I am a former prosecutor and community organizer. I believe that laws are intended to protect those without power and to constrain those who abuse it.
We have witnessed raw, naked power unleashed against human beings asking to be safe in their daily routines—something I take for granted. We have seen a system militarized and bad actors seeking to foment chaos while those who have seen so much death bravely demand it stop.
Around 3 am I began reading Dr. King’s Letter from Birmingham Jail. I got stuck on this quote: “There comes a time when the cup of endurance runs over and men are no longer willing to be plunged into an abyss of injustice where they experience the bleakness of corroding despair.”
Every headline this morning mentioned possible treatments for COVID. Yet when you read the actual story it quickly pivoted into a binary, "he said-he said" morass.
As someone who has lived the fight for treatments, let me drop some knowledge that I wish was included instead👇
Let me start with a disclaimer: I'm not a doctor. Instead, I'm an ALS patient and advocate who has lived with and fought to update the drug access and discovery system every day since being diagnosed with this 100% terminal disease 2.5 years ago. So I write from that experience.
The drug discovery system in this country is not a binary process where a drug gets approved with a snap of the fingers: instead it is typically a multi-year process with a handful of off-ramps along the way.
Woke up this am to find the sun shining brilliantly. I sipped my coffee and smiled because I get to see another day.
I also thought about how the fight against terminal disease brings out the same feelings as the fight against Corona: anxiety, anger, doubt, distrust, frustration
So, for what it’s worth a few learnings:
1. Lack of information gives false theories power. Focus on finding trusted sources and share them to empower others.
2. Anger at what has not been done is natural—channel it into ways to help you and others cope with this stressful time
3. Find brave groups that are rising to fill the void and support them on social and financially.
4. Take extra care for your friends and family in crisis, we are are brothers and sisters keeper.
5. Thank those on the front lines—all of them—every day.
A few minutes ago I was wandering around a hotel lobby with my cane looking for a bathroom. A woman in her sixties got up from her table in the restaurant and walked over to me. As she approached, she said,
“Sorry, sometimes I’m a over helper. Are you looking for an accessible bathroom?”
I said I was and she gave me directions to one right off the elevator. I thanked her and began to walk to the elevator.
A second later I felt a tap on my shoulder. It was the same woman.
She had gotten back up from her table and said, “Wait one second, I want to check with the front desk to make sure the bathroom is open.”
She sprinted over to the front desk and after a minute came back flashing a thumbs up.
Like all good stories, this takes a bit of time to tell but I promise you, it is worth it.
Today I found myself on a plane again. Only this time I was flying to DC to see Steve Gleason be awarded the Congressional Gold Medal. This Medal is a huge f’ing deal.
Why?
Steve is only the 160th person ever to receive this medal. Mother Theresa received it. Pope John Paul. And now Steve.
The enormity of this moment, that a guy with ALS—a guy I know—is receiving one of highest awards humanity created hit me as I waited for my ride to the airport.
As I sat there I began to formulate a plan: I would get the pilots on the flight to DC to talk about Steve and ALS on the intercom mid-flight.
I had no idea how I would make this happen, but I was confident enough in my nascent plan that I wrote out what I wanted them to read.