I Feel Messed Up

Beware the Ides of March

We recently passed the third anniversary of the death of my friend Chris. It’s so awful, I don’t write or speak about this much (too painful) but I thought you should all know about it.

My family had known Chris since we moved to Mobile, Alabama in 1983, I was 1 years old then. Chris had Duchenne’s Muscular Dystrophy. His mom and my mom started a sort of two-person parent support group.

He went on a trach and ventilator not long after I did, in the mid-90s.

Because neither of us had much support to get out of the house I rarely saw Chris in person, though he lived 10 minutes from my house. I last saw him at his 24th birthday party, but we kept in touch by chatting on-line. We were friends.

Chris was a cool person. He was a very different personality than me. He was hardcore, and rarely complained. Whining was beneath him. He thought displays of emotion uncool whereas I tend to be seething with emotion, often silently, but emotional. He would probably hate this blog. He thought me talking politics was sorta “gay” and pretty pointless, though he had a great kind of warrior respect for me and my tenacity, especially after my two-year “Crusade” actually succeeded.

He loved heavy metal music like Metallica and Kittie. He had a dyed mohawk or shaved head, and often wore that flaming skull and rebel flag T-Shirt. He loved sci-fi, X-men, comic books, writing action stories, his friends, and women (this ended up being the primary topic of our conversations).

What he valued most was guts, balls. Bravery. Action. One of his short stories was about a Viking warrior. Maybe Chris was a gilgul (reincarnation) of a Viking warrior or something. While he often found my political rants annoying, and thought politics pointless, he admired my unrelenting gall.

Chris was in love with a girl and finally told her everything in 2003. He bore his heart out, then waited. He said if she didn’t answer by the Ides of March he knew to give up. Beware the Ides of March! March 15 came and went, and no answer.

Chris used to have at the end of his emails, as his signature, “If you have a dream, or something you need to say, or to let out, don’t hesitate, don’t let go of that opportunity, it may never come again.”

March 9, 2004, the next year, Chris died.

Alabama Medicaid provides nursing care through the EPSDT program, they are mandated to. But after age 21, people are no longer eligible for EPSDT, and Alabama does not provide any sort of full-time care through other programs (except for the handful like me on the new AT waiver we got from my “victory” in 2003 or people with MR allowed on the MR/DD waiver).

Around 1999 I think, Chris turned 21, and of course lost his care.

Chris’ parents were trying to do his care 24/7, alone. They had not fully slept in 4 years or something. Chris wrote up something about his problem and I put it on my Crusade web site. In his message, he wrote of his fear that unless he could get some sort of care back, his ventilator tube could come disconnected and no one would be there or wake up to hear his ventilator alarms in time to save his life. He said this on local TV as well. As you know I had been warning about the dangers of providing no support to people after age 21, for years.

March 4, 2004 Chris’ ventilator tube came off, and no one woke up. Once found, Chris was taken to the hospital, where he was in a coma and brain dead from the prolonged lack of air to the brain. March 9, Chris died.

He was 26.

I went to the wake, and the funeral.

This was a devastating, life-changing thing for me. The impact on his parents can’t even be put into words.

His death was preventable, and the fault of the awful situation of near-total lack of services in Alabama. Parents can’t maintain care alone indefinitely. We know that when care is not provided to people who need care to survive, they don’t survive. We know that if Chris had full-time care, if Chris did not live in Alabama, and lived in a state that provided such care, this wouldn’t have happened.

Chris’ mom told me she wants to make sure this never happens to another family again. As the leader of the anti-21 cut-off campaign, I went on local news and explained that the system is still broken. This is the last report of it still online: “Alabama Medicaid Policy Blamed For Friend’s Death” By Dave Reynolds, Inclusion Daily Express, March 29, 2004.

Lots of people think politics don’t really matter, but if you’re one of the poor and disabled people who have to rely on the government, politics can kill you.

I lobbied hard for Chris, he himself wrote many letters, and for years his case was refused because Alabama Medicaid says they can’t afford to expand.

This country has been slashing programs for the poor and disabled for over a decade like it has no consequences, or worse, as I detailed in Fighting Cuts, Demanding Universal Health Care, they think that cutting off services benefits them–that it is a great thing. It isn’t. It doesn’t benefit you. It is evil. I believe this is the fifth 21 cut-off death in the city of Mobile alone, that I know of. The disability community in the South feels under siege. Know that there’s still a developing, worsening situation with home care policy in America as more and more people turn 21 and find the supports they need just aren’t there.

Politics is not a game. The disregard (or outright cruelty) of politicians can kill.

What do I do with all the rage, despair and cynicism I still feel inside? I feel messed up. I feel grief, mourning, disappointment, frustration, rage, motivation, fatigue, passion, love, fear, and ponderings about media, society, people, girls, disability, life, my life, my future, all under layers of slimy cynical build-up…and right now I am paralyzed. I just feel broken. I just feel messed up.