My running pitch: I can’t even begin to explain to you how much running has been an elemental coping mechanism in my journey with TSC. For better or for worse, I have come to running as a corridor of freedom in a world that has often been complicated, chaotic, uncertain and downright scary. Time running has often opened channels of thought that enabled me find ways to manage the stresses of everyday life as a TSC parent. I have been a TSC parent for the past 22 years. I am not hear to share my martyrdom or sainthood or insanity, because you all have your own stories. I just am sharing to give you a glimpse of the depth of my inner motivation to help bring this fundraiser to fruition and see it be successful!
I’ve been on a mission since 2012 to run a marathon for and with the TS Alliance to raise funds and awareness for Tuberous Sclerosis Complex. Tuberous Sclerosis Complex is genetic disorder characterized by the growth of numerous noncancerous (benign) tumors in many parts of the body. These tumors can occur in the skin, brain, kidneys, and other organs, in some cases leading to significant health problems. As you probably know, I have three children affected by this condition and since kicking booze in 2012, have wanted to use my running ability as a vehicle of some sort to contribute to the cause.
I reached out to the illustrious, late Dee Triemer at TS Alliance in 2012 to see if they were an official charity for the Boston Marathon. Selfishly, I wanted to jump into the Boston Marathon without having to qualify, as those on fundraising teams do not have to meet race qualifying standards in another marathon prior to gaining admittance to Boston. Dee, of course, got right back to me after doing some research, and explained that the application process to become a charity had officially closed for the year.
I stowed the idea and kept running, eventually qualifying for Boston as an individual and running in 2016. I managed my own fundraiser, focused on the same idea, raising funds and awareness. It was a success and I was somewhat content with my efforts. Somewhat content. Runners are essentially maniacs and soon enough, I was hankering for more. So flash ahead to early 2017. I was reading my TS Alliance magazine, Perspectives, and saw a blurb recruiting runners for upcoming NYC Marathon! The first official Team TSC! My initial reaction was one of frustration. Why hadn’t I known about this until now? Complete ego trip. Now the TS Alliance was officially doing marathons and I wanted to be a part, dammit! While the timing was bad to get involved in that cause, I did not give up on wanting to be a part.
I had this foreshadowing that I would be running in the Marine Corp Marathon at some point in the near future. My little brother, Col. Jason Woodworth, and his family, will be moving to DC in July and my oldest son Woody, and his wife Chelsey (both runners) also live in DC, so there’s that. Anyway, following my intuition, divine guidance or just wanting to see my family in October 2018, I emailed April Cooper, Director of Community Outreach Programs at TS Alliance, and lo and behold, we exchanged emails on the eve of the deadline for charities to apply for groups of entries in the upcoming 2018 race! However, the smallest number of spots we could apply for was 50. That meant we would have to get 50 people signed up to run for Team TSC and commit to fundraising a certain minimum dollar amount. Which I”ll tell you now, is a very reasonable $1000 bucks per entry.
I thought, of course “no probs! we can do that easily”, and I told April that I was completely confident we could get that many people to run for Team TSC. She had her own connections to this race to motivate her to take the plunge, and we got the 50 spots to fill! Yayyy!! Then, Oh Wow!! and 50!! Oh Boy!!
Let’s just say I was jubilant to be a part of this new project and was ready to throw every ounce of energy I could spare to help pull this thing off. Boy was I naive. Since then, I’ve learned what a huge effort behind the scenes this was going to involve, and at a volunteer level. It was going to require more time and energy than I really had to spare, but as I’ve said, this is a calling. I was down with it.
What’s become apparent to me as we are going full steam ahead now, actively recruiting runners to run for our cause, is what a big ASK this really is and how far out of my comfort zone I was going to be catapulted.. And maybe that’s the lesson, for me. I’ve been reaching out to ask for help from just about every corner of the many chapters of my life in trying to help get TeamTSC off the ground. If you knew me when, or know me know, and I haven’t contacted you, watch out. It’s coming.
As a part of our family’s journey with TSC and the multitudes of challenges these kids have faced, I let go of many of my old connections. The cyclone of trauma and tragedy we all experienced in managing the manifestations of this condition for years and trying to survive, had taken its toll on me personally and connections have fallen by the wayside in the process. It has been so bleak at times, that all that seemed to matter, was what was relevant to survival in the immediate day. I’m happy to report than things have slowly gotten more stable, manageable and brighter, yet still I resisted reconnecting with many past supports.
I will add this for other TSC Moms, caregivers, anyone affected by a diagnosis such as TSC. There’s already an inherent level of vulnerability felt when one has to continually ask for help seemingly daily, in finding and securing the services and supports necessary in the management of this condition. It can leave a caregiver feeling emotionally exhausted, marginalized and without a shred of interest in making any connections except with those in one’s immediate circle of supports. Financially, it can be unbearably stressful as it can be almost impossible to work outside the home, due to the sheer volume of necessary and often emergent appointments alone, not to mention medication management, IEP and ISP planning and meeting, etc, I could list pages. It leaves one bereft, winded, beat, shut down, cut off and isolated.
Enter Team TSC. Regardless of prior mentioned inhibitors, I have forced myself out of my comfort zone, almost daily, to reconnect with old connections, to put aside my own insecurities and vulnerabilities and push forward. Just as so many of us must, as TSC parents. I’ve started going to fun runs at a local sneaker store, I’m training with old competitors, and starting to get involved in some local running groups, I must have emailed the team with whom I am working at the TS alliance shamelessly, daily often, with ideas and suggestions. I’ve peppered some of my closest friends, not to mention my partner and kids, with long winded conversations regarding my mission and I’ve gotten my son Jack, running daily which is a huge accomplishment for him.
So, friends, family, connections, readers far and wide, I’m here to thank you for already being a part of Team TSC because in so many ways, you are. What I’m going to ask is that you spread the word about this incredible fundraiser that has the potential to blast open the doors on not only fundraising, but awareness and connections around the country! That is my vision for Team TSC.
If you are a runner, or were a runner, go to a gym or fitness club where there might be runners, consider posting our flyer and talking up this opportunity! We already have 10 people, at last count, signed up to run but we want FIFTY. Fifty is nifty! We have a phenomenal Team at TS Alliance and my fellow Team Ambassador, Ryan Novotny, brings his legions of marathon racing and training as well as military experience to us to keep us on course! A big team, sharing our stories and supporting each other as we train and fundraise for this grueling event, which could be the best, most broadening, out of your comfort zone experience you might ever have. And come on,if you’re involved or impacted by TSC already, you already are familiar with the out of the comfort zone feeling, so why not go one step further and help us out!!
Thanks for reading and here’s where to go for more info:
Team TSC-GO SIGN UP OR PASS ALONG:
Email info: Me, firstname.lastname@example.org, email@example.com
TS Alliance: firstname.lastname@example.org
Tuberous Sclerosis Complex: http://www.tsalliance.org/about-tsc/
Facebook page: https://www.facebook.com/TeamTSCMCM2018/