The tarnished tiara

A little like the tarnished halo I envision my son wearing.

Today is my 65th birthday. It would have been my son’s 43rd.

This is the 10th birthday I have celebrated without him. I thought about that as I lay in bed at 8:30 this morning, the time he entered the world 43 years ago.

He enriched not just my life, but the lives of pretty much everyone who knew him. He was smart, wickedly funny and kind. He was also a self-proclaimed jackass, as were his two best friends, James and Christian. The three of them together created a shitstorm of hilarity — unless, of course, jackass was not your thing.

Michael spoke his first word at 7 months. It wasn’t Mama; it was mouse. See, he had this little squeaky mouse and he dropped it. I picked it up and gave it back to him and he said, “Mouse.” Clear as day.

I thought he couldn’t actually be saying mouse because he was seven months old, but he dropped it again and again, and each time I handed it back, he said it again.

He pretty much didn’t stop talking after that. He drove his teachers nuts. He distracted everyone else in the classroom. But, in his defense, he was bored. The teachers who allowed him to read books years ahead of the abilities of other kids his age were the ones who got a little peace.

Mike, age 6.

When he was in the fourth grade, a teacher took away the collected works of Edgar Allen Poe because she thought it would give him nightmares. I had to call her and try to explain his tastes in literature to get the book back.

I got calls at least once a week about how he was being disruptive in class, and each time, the teacher had insisted he just do the work his classmates were doing. Well, if he finished the assignment in five minutes and the rest of the class took 30 minutes, that’s 25 minutes for him to be bored and trying to find ways to amuse himself.

As I said, the teachers who found him something to do were the ones who got a little peace and quiet.

When he was in fifth grade, they forced me to put him on Ritalin. He hated it, I was against it, but the school district threatened to call child protective services and report me for being neglectful. I was afraid they’d try to take him from me, so I allowed it.

A couple of months later, Michael came to me and said he hated the medication, that it make him feel like “not-me.” So we made a deal: He would contain himself. He would be conscious of his impulses and not let the teacher know he hadn’t taken his medication, and we would see how long he could fool them. It was three months, and in that time, an attorney friend of mine said she would fight the district for me if they tried to force the medication on us again.

When the teacher called and said, “Someone forgot his meds this morning,” I was able to tell her it had been three months since he had taken a pill and we would not allow them to force us into medicating him again.

The solution, of course, was to allow him to read in class when others were finishing their work, and he read science fiction novels.

But in his adolescence, he turned to drugs and alcohol. He said years later that the Ritalin had been the gateway drug, the thing that turned him onto mind-altering substances. I don’t know if that’s true, but he believed it.

He sobered up when he was 22, and he spent the remainder of his life helping other people get and stay sober. He saved lives, but there was no one with the ability to do it who would move to save his life when he couldn’t buy insurance at any price.

His doctor wrote in his medical record, “Patient needs a colonoscopy but can’t afford it.”

Later, when the symptoms started, he went to the emergency room three times. But the ER only has to stabilize you, and he left with the wrong diagnosis and the wrong medications three times. A doctor finally agreed to do a colonoscopy, but he didn’t tell Mike that his colon was entirely blocked. He just sent him home and wrote in the record, “couldn’t complete procedure. Next time use peds scope.”

I couldn’t get an apology for that from Memorial Health in Savannah, where the doctor is on staff. An apology was “too much to ask,” even when I offered to sign a written promise not to sue.

My son was a remarkable human being. Through three years of pain and suffering, he never lost his sense of humor — and he maintained his sobriety.

Mike had an incredibly foul mouth, and my penchant for dropping the F-bomb likely is just him channeling through me. (That’s my excuse and I’m sticking by it.)

I understand his wise words are still quoted in the rooms in Savannah and in the Triad here in North Carolina. He had the wisdom of a very old soul.

I was told earlier this year that he’s very, very proud of me. That came from a woman who introduced herself to me with the words, “You’re going to think I’m crazy, but I have a message from your son.” I thanked her, and as I started to walk away, she added, “One more thing. Did you know he stands behind you when you speak, and he’s smiling?”

Then I knew she wasn’t crazy because I feel his presence sometimes. And I know he’s smiling because he loved nothing more than being the center of attention.

Before he died, he asked what I planned to do with the Dead Kid Card (he had spent three years playing the Cancer Card). I told him I planned to work for universal access to care because, as my T-shirt says, “Everyone deserves health care. Everyone.”

I have been arrested four times — so far — in this work. I don’t go into legislative office buildings to get arrested; I go to plead for the lives of every human being who can’t get access to care. I go, hoping against hope, that I can change one mind, two minds … enough minds to get a health care system that doesn’t reject human beings because they can’t pay.

This work is my life now. I stand for the people Jesus called “the least of these.” You can arrest me, make me do community service (which I do anyway), throw me in jail … but unless you kill me the way this system took the life of my precious son, I will keep on doing what I do with every ounce of strength, every breath and every beat of the heart left to me.

Happy birthday to me, and to Mike. The tarnished tiara is in memory of you, my sweet boy, as is all the work I do.

 

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