Thursday, July 12, 2012

How Saturday night phone calls changed my Sunday morning lakefront run

I had been waiting all week for my Sunday morning run. In general, I do my hard run on Saturdays and I do an easy 10 mile recovery run Sunday a.m. This past Sunday the heat wave, which destroyed my runs all week, broke, meaning my first fun run in a while.

Starting out from my apartment (this is the view from the end of my block), the lakeside was cloud-covered. Yes! No sun beating down on my head this morning!

As I continued ~.4 miles up the trail, the wind had the water beating up and over the concrete

A large group of ~20 runners came up around the bend while I was taking photos and I took off to not get stuck behind the group.

While I had downladed Sherlock Holmes to listen to while running, I needed to zone out and listen to music. The Saturday night had been heavy. I went into work Saturday at ~1pm to continue the research for the paper I am working, which looks at adductor myotomy for children with cerebral palsy. Cerebral palsy is "a nonprogressive disease due to a brain insult" that has many different causes/etiologies. While the lesion may not be getting worse, symptoms get worse with time as walking will be more difficult as the child grows in size/weight, etc.

Adductor myotomies are partially severing the tendons connecting the inner muscles of the thigh. This surgery is often performed not to increase function, but because the spasm-based scisoring of legs will prevent cleaning of the genital region by the caretaker and other difficult symptoms. The surgery will thus enable cleaning and other necessary activities within that region (yes, I mean the legs are spasming/contracting so badly that you cannot wipe them and the poor kid is pulling the hip out of the socket), not necessarily make it easier to walk, and are performed on kids with the 'worse' cases of cerebral palsy, the more recalcitrant, severe cases.

As I began making the phone calls (I had 110 people to call), I wound up becoming a voyeur into this alternative reality of these parents' lives. I called one house and asked to speak to *Samuel* (not his actual name)'s mother. The woman said this is she. I asked if she had received the letter about the study and if she had any questions. She burst into tears and said that Samuel had passed on and was no longer with us. That she and her husband go to the cemetary 2-4x a day and have decorated his room with medals from his special, private school.

Another mother burst out in rage regarding clinical studies and the adductor myotomy and her daughter in general. *Katie* had been able to walk a year ago when she had the surgery and now could no longer walk (this is common progression of severe cases of cerebral palsy and many of the parents were thrilled with the surgery, so it is MORE likely that becoming nonambulatory was due to disease progression rather than the surgery, but I don't know). Also the family had participated in previous studies regarding different methods of using standard drugs, but had never been told about the results. She had given up her professional career to care for her daughter, but had a master's degree, and deserved to be treated with respect . I listened attentively and responded as best I could, knowing how horrible it feels to give up your life for someone that you can't save, and said what I could to assist her.

One woman was downstairs in the rehab center again with her daughter, so I ran down to meet with the two of them. The daughter had a seizure 3 weeks ago and the mother hasn't checked her mail, but they were going home tuesday. The mother started trying to figure out what caused *katrina's* seizure, saying she thought it was the heat. But it could have been that katrina hadn't slept adequately the night before. Or that Katrina had sugar, or....

This was hard for me to hear and I cut the mother off saying she will never know and that seizures are so idiopathic that it is nearly impossible to determine. Ketogenic diets (no sugar) help in a minority of seizure cases, specifically one girl with cerebral palsy due to mercury poisoning while in her mother's belly has completely stopped having seizures while on a ketogenic diet. (The opposite can also be true, that too much protein will cause seizures if people have difficulty tapping into their fat reserves). The night before my mom's final seizure, which we couldn't get under control for two weeks, and completely paralyzed her except for her eyes, we celebrated my birthday and ate cake. In fact, just a few hours before meeting katrina's mom while on my Saturday morning run I though of the girl without seizures and then thought of my mom's seizures and had wondered whether my birthday cake had killed my mom. It took a few hours for my rational brain to kick in and remember all the cake she ate and did not have seizures.... But the thought will always haunt me.

While walking home I pondered whether there was an association between who was at home on Saturday night and available to talk about their children and the severity of emotional difficulty they were experiencing. I thought about labeling it the Saturday night Psych night. But then I realized that I was the one making the phone calls, I was the one who was at work on a Saturday night. So am I all that different from the parents I was calling?

All this ran through my mind as I was enveloped by the wind, looking out over the beach, and I ran fast. Too fast, finishing over 10 miles in under 70 minutes. But I needed to run. Like Forrest Gump, one of my heros: "Now you wouldn't believe me if I told you, but I could run like the wind blows. From that day on, if I was going somewhere, I was running!"

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