Blogs

UPDATE 9/11/09

Hello all! I apologize for another overdue update on Often Awesome!
I’ve got lots of exciting news!
Gifts:
Often Awesome can now accept gifts! For all you members of the Often Awesome Army that have been itching to give Kaylan funds to buy a wheelchair accessible automobile (the ALSUV), we now have a fancy “donate” button on the website!
Also, if you want to get really fancy, you can sign up to give 10 dollars a month for 12 months. That’s right, our web officers are pretty darn impressive, huh? Devender Sellars, Mae Axelrod, Scott Hicks and Carrie Archer did an incredible job getting this website to the state it’s in and they deserve many batches of cupcakes.
Will McChesney has created a blog for the website. Only Often Awesome Officers can create blog posts but anyone is welcome to comment. You can register if you don’t feel like filling in your information each time you comment, but it’s not necessary. William deserves cupcakes with buttercream, ganache AND filling!
www.oftenawesome.org
Tim’s Health:
Tim went to Emory a couple of days ago and got wonderful wonderful news. There has been absolutely no progress of the disease. When Tim gets stressed out, his symptoms are exacerbated (even his throat has started twitching). I guess it’s probably not a good idea to spend an afternoon poking him or doing whatever else it is that stresses him out.
As many of you know, Tim and Kaylan are getting married!! No date has been set, although they have decided that the ceremony will be immediate family only and there will be a big party for all of us friends. It’s Tim and Kaylan, so you know the party will be awesome. Congrats, our darling LaFranskis!
Events:
Don’t forget, the deadline for the art auction is approaching!
Holly Azzara sold merch and prints at Little John’s Tattoo Convention this past weekend and we are very very appreciative of the effort and the sentiment. Thank you, Holly!
Joel Collins allowed Michael Sileno, Kellie Gerringer and I sell merch at the Snakes Eat Rats show. Thank you, Joel!!
Dan Savage mentioned the website on the Savage Lovecast and we got lots of messages and donations. Thank you, Dan, and all of you who are now invested in Tim’s well being because of Dan.
As always, I don’t think our Timothy would be thriving as much as he is without the endless love and support of the entire Often Awesome Army. So thank you all.
love,
lis tyroler

UPDATE 8/18/09

I’m Lis Tyroler. A couple of months ago, Tim and Kaylan asked me to be in charge of all of the Often Awesome efforts. If you came to the benefit shows, you probably saw me behind the merch table.
Fundamentally, I think that there are two main components of my job.
1) I’m an information hub. I collect and disseminate information, emails, offers to help and advice. I’m in touch with almost everybody that has information or is working on projects. I don’t create or gather most of the information- I just collect and spread.
2) It’s my job to make sure that everyone in the community that wants to help, can. This illness doesn’t just effect the inner circle. An enormous amount of people love Timothy to pieces. It hurts us when we feel powerless and it’s empowering to feel like there is SOMETHING we can do. Sometimes Tim talks about feeling guilty because so much work is being put into the Often Awesome cause. I tell him to suck it up because it’s about us as much as it’s about him. We need this so that we feel like we have a tiny amount of control over something.
As Catie said, Often Awesome is like an octopus and it’s my job to make sure that all of the tentacles are working together to feed the body. Actually, her metaphor was a lot wittier, but totally NOT appropriate for a large audience.
I know how much everyone has been worrying about Tim and I wanted to keep you guys abreast of the goings on over the past few months. A lot has happened so this email is going to be really really long. I will try to update you guys more frequently and hopefully that will make these “newsletters” a lot shorter.
Most importantly, Tim’s health: This is vague because I’m not 100% sure how to talk about this stuff. Tim has pretty much lost the use of his entire right leg from the back down. However, his respiratory health is still pretty good– personally, I like to attribute that to the ridiculous amount of bike riding he’s done in his life. He is currently enrolled in a drug trial at Emory University for Arimoclomol. He’s got a brace, some rock star canes, a power chair, a manual chair… he even takes Smuchit for walks in his power chair!
Tim and Kaylan are being very proactive with Tim’s health! Basically, by being 5 steps ahead of everything that he needs, they are taking control of the uncontrollable and that is a very very cool thing. So don’t be surprised if he has his feeding tube inserted soon. He won’t need it for a long time but, because the procedure becomes more dangerous as his respiratory capacity decreases, it’s a smart idea to go ahead and dive in head first. He’ll be getting a bipap soon, which he will use to help him breathe while he’s sleeping (people also use them for sleep apnea). This is one of the best ways to prolong his respiratory function. He’s even going to go ahead and record his voice for the voice box that he will eventually need. See? Being proactive is awesome.
Kaylan has been an angel. She’s got more wit than you can take a stick at and she’s managed to achieve the perfect balance between telling Tim to walk it off and being the most nurturing, caring girlfriend I’ve ever seen. Plus, she keeps the rest of us sane, which is kind of ridiculous.
So what’s going on with the rest of Often Awesome?
Donations:
I can’t count how many emails I’ve received over the past month, begging us to let you give us money. Why haven’t we had a donation button on the website yet? Basically, because of Tim’s status as a medicaid recipient, we have to be very very careful about how we accept money from people. It is not a donation, it is a “gift” and it doesn’t go to Tim, it goes to Often Awesome– we handle the money and use it for things like buying Kaylan a wheelchair accessible automobile (The ALSUV, as she calls it). Very very soon, we will have a paypal button on the Often Awesome facebook page AND oftenawesome.org and you will be able to gift Kaylan as much or as little as you’d like to help her afford the ALSUV. These gifts will not be tax-deductible.
We have been speaking with lawyers and are in the process of setting up some sort of trust or account that will definitively not interfere with Tim’s medicaid status. For the time being, all money will go directly to Kaylan so that she can purchase a car and drive Timmy around in it.
Carrie Archer and Hugh and Eva LaFollette deserve an award for helping us figure all of the money, medicaid, medicare, SSI, disability, etc… It has been awfully confusing and they have been incredible.
Benefit Shows:
WOAH. You guys really love Timothy. Michael Sileno organized a benefit in July and Devender Sellars organized a Kudzu Wish reunion show this month. The combined headcount was over 600 people!!!! That’s right. It was unbelievably rad. There are videos of songs from both shows floating around on facebook. It was a pretty amazing experience and Tim was so touched by all the love and generosity. Thank you to the musicians, the venues and all of the people that showed up. You guys are amazing.
Merchandise:
Michela Maxwell and Catie Braly designed some incredible stickers, buttons and t-shirts for the events and manufactured the t-shirts with help from the incredible Kate McNeely and others. They haven’t received their cupcakes yet but they will! People at the benefit shows went crazy for this stuff and we’re almost all out! More will be manufactured within the next two weeks.
Remember all of that stuff I said about money earlier? Because of all of that, we don’t sell the t-shirts. We will, however give them to you as appreciation for “gifting” Often Awesome with a certain amount of money. We’re kind of like NPR in that way, except our sense of humor is way more morbid. And SOON, we’ll be able to put the t-shirts online and show our appreciation for your gifts that way!
The Website:
Devender Sellars, along with his team of Scott Hicks and Mae Axelrod, has designed a website- oftenawesome.org. It’s a work in progress, but Devender did an awesome job and is committed to continuing his work on it. We will be adding new features (like a paypal button), as well as a page to show our appreciation for every single person who has contributed to this effort. This email is already way too long and I promise you that even if you weren’t mentioned, Tim and the rest of us are so moved by all of the support.
Thank you again.
love love love!
-Elisabeth Tyroler
****
P.S.
We also have some cool stuff coming up!
Kat Lamp and Jessica Trotman have organized an art auction at the Green Bean. You can check out the call for artwork on the Often Awesome group page.

Syndicate content