Thurs. July 28: Pitch Union, Vaudevillianaires and The STiG rock the Loop for special fundraiser for victim of ALS

Posted: July 25, 2011 by Windsor Zene in Benefits, Previews

Scott SeftonThis Thursday night at The Loop (156 Chatham St. West, top level), several area musicians (Pitch Union, The Vaudevillianaires and The STiG) answered the call from friend and music scene supporter Andrew Wong, who was throwing a benefit to help friend Scott Sefton. Sefton was recently diagnosed with ALS (Lou Gehrig’s Disease) and Wong wanted to help raise money to make Sefton’s home wheelchair accessible. Guest writer Jeff Stiles contacted Scott to update people on what the future holds in store for him now that his life has been so dramatically altered.

Jeff Stiles

Up until early last year, Scott Sefton was a union plumber and pipe-fitter in his mid thirties. He was a strong, hard-working young man with a wife and a family. In the spring of 2010, he felt a stiffness in his neck and was sure it was a pinched nerve. He was accustomed to heavy lifting in his work and it ‘just made sense’ that this was a work injury. His doctors even felt it was a pinched nerve. But it didnt get better. Tingling in his left hand led to weakness. He went for an MRI to diagnose the problem further. Suspicions grew and Scott was sent to a neurological specialist in London where, test after test, it would reveal the unfortunate scenario. Scott had ALS.

ALS, or Lou Gehrig’s Disease as it has come to be known in North America, is a motro-neuron disease that is caused by the degeneration of nerons in the spinal cortex – the brain center that sends messages to body parts. People afflicted with it lose muscle and speech control, become weak, and develop breathing and respiratory problems. As the muscles begin to atrophy, other problems then set in such as pneumonia. Patients have trouble getting out of bed, walking or swallowing. Physicist Stephen Hawking is a living example of this disease and how it affects the body. Although medications can slow the symptoms, the downward spiral gradually continues and the result is almost always death.

Scott talked to me by phone in a voice that sounds like an old sailor who has seen everything and drank from every bottle in his travels, but it’s the disease talking. In his voice, it’s clear the disease has a grip on him.  Tragedy, itself, begets emotion but its hard not to be emotional when you see someone trying to rise above their own suffering. It is quite sobering. It’s a story of love. A one-day-at-a-time committment to get the most out of each day.

Here is my interview:

Jeff Stiles: How did you react to the news?

Scott Sefton: It was pretty shitty at first. I was in a funk for about month or so but one day i woke up and said “If you have 5 days to live, how would you live it? Do you want to cry on the couch or do you want to enjoy every minute that you have?” I’ve got two little kids – a 4 year-old and a 2 year-old. So I stopped feeling sorry for myself and started enjoying every minute. I felt I was allowing the disease to take over quicker if I was depressed.

Jeff: What does a bad day involve?

Scott: I don’t wake up feeling bad, neccessarily. I have a hard time walking, so i fall quite a bit. And little things like holding a bottle of water – I get down a bit if I drop it. Or if I trip and smack my head off the tile. It’s frustrating. I used to be a pretty strong guy. People take things for granted – like I have hard time holding a fork in my right hand. My left hand is pretty much shot. I get frustrated as the day goes on but I sit down. Relax. Get my bearings.

Jeff: Do you have days where you feel great?

Scott: I do. When you talk about the disease they call those plateaus. Where everything levels off. I’ve had a couple of those days but not many. You just pray that they come.

Jeff: Has this made you religious?

Scott: My wife was brought up Catholic but I didnt really have a background as a kid. I believe in God but i just think there something out there that can help me, I guess. I pray for a cure and to be normal again.

Jeff: What kind of adjustments have you had to make around the house?

Scott: We’re putting an addition on the house for me that’s wheelchair accessible. The wheelchair is a definite possiblity in the future and we’ll need a speacial tub or shower ’cause today it took me 20 minutes to get in the shower ’cause I couldn’t get my leg over the ledge. That was frustrating. Pissed me off quite a bit. But we’ve been making the house more wide open for the day when that (wheelchair) comes. My outlook is to plan for the worst and hope for the best.

Jeff: Those sound like words for everyone to live by.

Scott: When you see the shit on the ALS website, its pretty grim but I’m not gonna read up on the disease and base my life on what its done to others. I don’t really want to know what its done to other people and other families. I just want to live my live and deal with each day as it comes. The shit on the website is depressing and I dont want that in my head.

Jeff: What do you feel you’ve gained from this struggle so far?

Scott: I was the guy who would hold a door for someone in a wheelchair or someone in need. But now I just feel so  much more for them because I’m in the same spot. Y’know?

Jeff: Has this opened your eyes?

Scott: One minute you’re fine. The next you’re not. Enjoy what you’ve got today ’cause you never know.

Jeff: Is there physical pain?

Scott: My back and legs have a lot of pain. The doctors say its because the disease is attacking part of my body and the pain comes from the fight that results from my body trying to ward it off. the disease is trying to get at it.

Jeff: How invloved are you with doctors?

Scott: I am part of a study that tries to answer a lot of questions about environmental factors, like exposure to stuff like asbestos. There is also something else called familial ALS that tries to see if it is in a gene but that’s not what happened to me. I’m just an unlucky guy who happened to develop it somehow.

Jeff: How has your family adjusted to the disease?

Scott: My kids don’t really know. They just see that dad needs a cane. My wife has been fantastic. Right from the beginning, she took the positive role. Even when I got down, she was positive right from the beginning. She has been my rock. She has her bad days but we keep our appearances up, put on a good face. We take a step back when things dont go well but we try to stay positive. Like i said, “we hope for the best but expect the worst.”

you can read more about the disease here:
http://en.wikipedia.org/wiki/Amyotrophic_lateral_sclerosis

A benefit for Scott will be held at The Loop on Thursday July 28th. Door open at 9:30pm. a donation of $5 will go towards the renovation of Scott’s home in order to make it wheelchair accessible.

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