The Guilfordian: A lot of people know you from Kudzu Wish. What are you doing now, musically?Tim LaFollette: It’s called Decoration Ghost. It’s got one member of Kudzu Wish, and then a couple other people that have played in Greensboro bands for ages. At 30, Devender (Sellers) and I are the youngest. The rest of them all have kids and stuff like that. So, still playing.
TG: Are you enjoying what you’re doing with your music?
TLF: Yeah, it’s – it’s getting a little bit more difficult. My hand is starting to give way a little bit, but I’m just going to switch to some form of bass-sounding keyboard, plug it into the amp, and play with my left hand, as soon as I’m no longer capable of holding on (to the guitar). I still plan on playing for a while. As long as I can.
TG: Can you tell people who don’t know what ALS (Amyotrophic Lateral Sclerosis) is?
TLF: It’s a degenerative neurological condition where your voluntary muscles all atrophy because the motor neurons die, and your brain can no longer tell anything voluntary to your body. Your brain, ironically enough, stays fine the whole time. There’s a couple ways it can start. Mine is genetic, which is actually a very small percentage of ALS cases, somewhere around five to 10 percent. Those cases are known as sporadic, which means there’s absolutely no known cause. I’m the fifth person in the family that we know about.
TG: When did you first find out you had ALS?
TLF: In May, but that came after a long diversionary process, which is not uncommon. I had just had a bike accident shortly before I noticed my symptoms of foot drop, which basically means that my other foot, I couldn’t lift it anymore, so it was just dragging. We were assuming that it was the accident. I went through this whole orthopedics wringer where they thought that I had disc herniation, a compressed disc pinching the nerve that was controlling the foot. I went to get back surgery – this unnecessary back surgery – in January, and things just got worse, so when I finally got checked over to a neurologist, it was very quick.
TG: What gave you or your friends the idea for the Often Awesome Army?
TLF: The term came up when Kaylan, my fiancée, and I were – you know, we have weird inside jokes – and somewhere, that phrase got chucked out months before the whole ALS thing, and I kind of jokingly suggested that that be on my tombstone. I thought it had a ring to it. And then after the diagnosis, we very quickly decided to go public with it, and to raise awareness of the disease itself, and to not try to be those people that suffer silently in the corner. She started a Facebook group two days later and called it (Often Awesome), and it just kind of stuck.
TG: Where would you like to see the organization go?
TLF: We would like to see it become an organization that helps people in similar situations. Young couples don’t tend to have to deal with terminal illness and all the weird shit that comes along with it. We’d like to have an informational arm to help people out, but also something that can help out financially. I was actually in a position where I had to leave my company for stress reasons, something that really triggers my twitches and my cramps, and that can really speed the progression (of the condition). I had to leave the company, which I had helped start, because I wouldn’t be covered. I basically have to make sure I make no money. $750 a month for the rest of my life, but I’ll have Medicare and Medicaid. There’s the tradeoff. And actually, Kaylan and I can’t legally get married, so we’re doing the straight version of a gay commitment ceremony. If we got legally married, my Medicaid would be out the window.
TG: What a system.
TLF: Go, public option!
TG: What would you say to Guilford students who want to contribute to the Army or start their own Armies?
TLF: I don’t really know if I want to ask them to do anything. But we obviously couldn’t continue if we didn’t have all the help that we have. It’s been flattering to have everyone band together, and it’s really spread out the burden. It’s taken a lot off of Kaylan’s shoulders, which is important to me. The reason I had to kind of humble myself and accept help in the beginning is because I have to learn how to accept help, because at some point, that’s all I’ll have. Everything from getting out of bed to getting dressed to going to the bathroom – I won’t have the ability to do any of that myself. Granted, there’s technologies that didn’t exist when my mother and my grandmother had (ALS), but I won’t be able to take care of everything. I’ll be able to type with my eyeballs, though, which is pretty cool.
TG: I read that you’re planning a new Web site for people with ALS.
TLF: We’re doing a Web series following the progression (of the symptoms). Maybe there will be a new Web site, but it’s just going to follow the adventures of someone with ALS. It’ll tell a story, but still be able to let people know things, especially if they’ve got it, or if they’re dealing with it, because it’s something that very few people have, but when someone has it, it really takes a village.