Friday was Shot Day. I have cervical dystonia, and to help relieve the muscle spasms I get 400 units of Xeomin injected into various sites around my neck and shoulders, as shown in this graphic. I have to do this every three months. The doctor uses an EMG machine to help guide the needle into the areas that are spasming the most. The machine squawks like a police radio while he’s doing this.
I’ve learned to breathe my way through the injections. I typically need a few days of downtime after the shots as I usually experience some post injection pain. This is my third time with this doctor and he’s still trying to fine tune dosages. It’s an art and a science to figure out how much and where to place this injection. This time I got 100 units alone into my right trapezius, the muscle I refer to as “the bad boy.”
This time was the first time in three years I’ve been able to drive myself on Shot Day. I mention this to the doctor and told him it was a good thing because my son needed to have his pacemaker checked. At this point I’m used to people being a little stunned and not knowing what to say to me, so I’ve kind of learned to just smile at the shocked silence.
I was even able to stop at Target on the way back and pick up a few groceries. I love to shop at Target but one thing I hate about is they do not automatically put your bags in the cart and I find myself having to wait a few minutes with all the grocery bags piled up, customers waiting to pay behind me and wondering to myself if people think I’m a prima donna for asking for help. Nobody has said anything yet. I’m not sure how obvious I look. I have some dystonia awareness cards to carry around with me but I keep forgetting to take them.
I planned on a quiet Saturday resting but our usual respite provider was not able to come and I had Nicolas in my room every 10 minutes asking if he could play outside in the 90 plus heat. By noon I was snarling at everybody. Things settle down after lunch and I sit in bed with my iPad. I track what is going on with #JusticeForEthan on Twitter, play some Candy Crush, join a few blog networks and discover 10 new posts written about Mrs. Hall. I mentally resolved to run a drama free blog and almost immediately begun wondering how long that would last. Finally settled in with the Kindle app and finished a book.
We were asked to speak for a few minutes at church on Sunday. I never liked public speaking before and now with my neck I have one more thing to be self conscious about. It went okay and I think I was probably pretty straight. I’m sure nobody listening noticed but this is the social anxiety I’ve developed since the diagnosis. You’d think being around the disability community as much as I am that I would have let some of my vanity go by now but that hasn’t happened yet.
I am still waking up at night thinking I am back at the beach. Come Monday I am vaguely considering returning to aqua zumba then the stiffness reminds me to give it a little more time….
Thursday was the day the Saylor family delivered over 340,000 signatures to Governor O’Malley. So far there is a definitive non answer from the Governor as to whether he will reopen the investigation.
Kimchi Latkes writes an open letter to the Governor:
“You will look like a good ol’ boy politician who didn’t want to rock the police union vote. I’ve looked up your record. I understand you have a promising political career and that you are no stranger to hard decisions. I want to believe that you entered public office to advocate for us all, even if that meant making hard decisions. Use your power and stand for the truth. Order an independent investigation. Make me believe.”
Walkserville Mom does some behind the scenes research:
“I’m no political operative, and I maintain a healthy suspicion about bias in the media, but instinct tells me that there’s something fishy going on. Jenkins can claim that his deputies did nothing wrong but fail to answer basic questions like “How did his larynx get injured.” State’s Attorney Charlie Smith can say “We are an independent investigation. I feel very strongly about that.” The deputies involved don’t have to say anything, except to a grand jury in secret. The witnesses only get to give statements to other deputies (no pressure there). And Governor O’Malley can just be silent.
And everybody is OK with this? Is this really politics as usual?”
Patti Saylor said the best way to train for interactions with people who have intellectual disabilities is to have a relationship with them.
“We didn’t put on a training at our church for people on how to interact with Ethan, and he had hundreds of people at our church that knew him and loved him,” she said.
Little Bird’s Dad asks, “Whatcha gonna do when they come for you?”
“What parent of a child with Down Syndrome, or cerebral palsy, or autism, ADD/ADHD, (or any other physical or mental or intellectual limitation which, historically, frightens the uneducated masses) isn’t scared shitless of the possibility that under-trained, over-armed, and over-zealous “police” won’t kill their child over a $10 movie ticket.”
As a matter of fact I am scared that this could happen again…to my son or to anybody else’s. This is why I am fighting. Please join us in advocating for #JusticeForEthan.
“A Nation’s Greatness is Measured By How It Treats Its Weakest Members” – Mahatma Gandhi.
“Then those ‘sheep’ are going to say, ‘Master, what are you talking about? When did we ever see you hungry and feed you, thirsty and give you a drink? And when did we ever see you sick or in prison and come to you?’ Then the King will say, ‘I’m telling the solemn truth: Whenever you did one of these things to someone overlooked or ignored, that was me—you did it to me.’ – Jesus Christ
I didn’t know Robert Ethan Saylor. But I am mourning as deeply as if I did. I am grieved over the senseless loss of a kind and innocent soul over the price of a movie ticket. And because this could be my son in the future. Not even close to being stocky, my little guy with the pacemaker who is well known to be stubborn and has difficulty with transitions could have something like this in his future. It would probably kill him instantly.
If you are hearing about this for the first time, Robert Ethan Saylor lost his life on the floor of a movie theater at the hands of three off duty police officers because he wanted to stay and watch the movie again. News reports stated “An autopsy showed Saylor died of asphyxiation brought on by his Down Syndrome. The medical examiner ruled his death a homicide, but the grand jury found no evidence to charge the deputies.” So, it’s death by Down Syndrome.
Last week the Internet and my Facebook stream featured dozens of images of cute kids with socks and touching videos. I don’t mind these. Those adorable pictures got me through the early days of coming to terms with the reality of giving birth to a little boy with Down Syndrome and a serious congenital heart defect.
But what is going to happen to these cute kids as they become adults? They aren’t so many pictures of the older adults with Down Syndrome. They are entering a world that views their lives as expendable, given the atrocious abortion rate of babies with Down syndrome, the lack of services and supports and the callous attitudes such as those that appeared in the recent Washington Post story announcing “Grand Jury Rejects Criminal Charges in death of Robert Saylor, Man with Down Syndrome.”
It should be noted that there are two other recent police brutality cases involving young men with Down Syndrome. In December of 2012, news reports stated that Antonio Martinez, 21, was walking to his family’s bakery while officers were in the area responding to a domestic violence call. An officer thought he looked suspicious and stopped him. When asked to stop, he wouldn’t listen. He was pepper sprayed, hit on the head with a baton and handcuffed.
In September of 2011 Gilberto Powell, 22, was stopped by Miami-Dade officers after they saw a bulge in his waist band. (It was his colostomy bag.) News reports state that he tried to run when they patted him down. Police said Powell broke free as officers tried to place him in handcuffs, hitting his head on the ground. He was struck in the face and handcuffed.
Three sets of handcuffs were placed on Ethan Saylor. This wasn’t even about proper training. This was simple common sense. Any parent or professional who works with the Down Syndrome population knows they need a longer time to process information, that communication is difficult, and that transitions can be tough but can often be handled with a gentle tone. Maybe a first/then. At the very least they could have called his family and just waited. Or maybe they could have extended a little grace and bought him the damn ticket.
I hope and pray that we see justice for Ethan. This is a Rosa Parks moment for the disability community. Ethan’s death cries out for justice. This is personal to all of us in the Down Syndrome Community. We’re not going to let this get swept under the rug.
This blog, in a way, is kind of a brain dump of some of the 50 years of experiences I’ve spent on this earth. In my early days of Twelve Step recovery I often wondered if my “war story” was kind of tame compared to others who had spent more time “out there.” 27 years later I daresay my recovery journey has probably been a little wilder than most.
There is one person who greatly impacted my life through his writing and it is because of his work that I hope my writing will impact at least one other person. In Twelve Step speak, it’s called “sharing my experience, strength and hope with others, and practicing these principles in all my affairs.”
Around 1987 I was shakily into my recovery journey. During my daily subway commute to lower Manhattan my face was typically buried behind the NY Daily News in the morning. I don’t remember how or why I started reading Bill Reel’s column. Whether I heard about him “in the rooms” first and then started reading, or if it was the other way around, I was hooked and always looking for the next column. Mr. Reel wrote about everyday people who had screwed up their lives and found redemption. From what I remember (unfortunately I can’t find his writing online anywhere) he did this with a minimum of Christian lingo. I grew up with very mixed messages about faith and spirituality and I had become completely turned off evangelical Christianity. Yet, I listened to Mr. Reel.
And then one day he wrote the column that took my breath away, that forced me to acknowledge my post traumatic stress disorder and to hop on a subway one night to go to some Catholic church across town and make my peace with God. I left the church that night a different person. I always hoped that I would have the opportunity to run into him at a meeting and thank him. Providentially, I did. I greeted him with starstruck admiration and thanked him profusely for that column. He seemed genuinely surprised and somewhat amused.
I guess his old columns are the property of his family, or maybe buried in the NY Daily News archives. I hope they get reprinted in some form some day. William McGurn, a long time friend and former speechwriter for President George W. Bush was mentioned in Mr. Reel’s obituary, wrote that “Many young writers grew up wanting to be Bill Buckley. I grew up wanting to be Bill Reel.”
Beliefnet.com wrote: “For his most faithful readers, though, “Reel People” was the column of the second chance. Week after week, he wrote about New Yorkers — alcoholics, gamblers, cheaters — who had messed up their lives pretty badly, but were searching for the road back. He wrote about these misfits with wisdom and humor and charity, because he saw them the same way Mother Teresa viewed the hard cases that often crossed her path: “There goes Christ in one of his more distressing forms.”
Growing up I wanted to become a journalist and go to Radcliffe. Because of my drinking and dysfunctional behavior I wound up a high school dropout with a GED. But I am one of those messed up New Yorkers who managed to turn things around (by the grace of God) and Mr. Reel was part of that. I’m not expecting this little blog will have anywhere near the reach that Mr. Reel did, but it’s because of the impact his writing had on my life that I do it…to keep paying it forward and to advocate for those society sees as worthless.