This race is #8 of my 12 planned races for 2017 and my resurrected project to dedicate each one to someone living with ALS who has inspired me.
Before I talk about the next race’s honoree, I need to talk gratitude for a moment. This week I finally added up the total amount that Team Drea had fundraised – specifically, I added in the donations that Team Drea athletes have raised directly for ALS TDI and realized they have raised $47,000 this year alone. That blows my mind.
I started raising money for ALS research 3 years ago this week, ahead of my “last” triathlon, Ramblin’ Rose Chapel Hill, which I will be doing for the 3rd time. We have now raised over $200,000!!
It isn’t the most ever raised for ALS, but every single donation is deeply meaningful to me and to the Team Drea member it supported. It has buoyed us through hard workouts, self-doubt, and dark days to remember that friends and loved ones believe in us and our efforts. Thank you.
Now, Pat Boyd and his wife, Paula.
I met the Boyds through Erin, a Team Drea member whose daughter swims with one of their TEN grandchildren. They invited us out to their house for happy hour, martinis to be exact. DP had to work so my mom and I went to visit.
Pat has been designing things all his life. After he got out of the Navy and driving ships for AT&T, he spent much of his career designing prosthetic eyes – a company his daughters now co-own and run. Think for a minute how much precise detail it takes to make an eyeball look like a real eye. He used that same precision and practical approach to designing the house they live in now, based on a Frank Lloyd Wright footprint.
The house Pat designed is L-shaped and situated around a pool with sliding glass doors that he can look out and see his grandkids playing. Pat started showing symptoms in 2009, but wasn’t diagnosed until 2012 after they’d been living in the house for 2 years. That’s when he designed the pool and outdoor ramped pathway to get to their bedroom instead of dealing with the stairs.
That visit inspired us to look for a plot of land where we could build our own dream house…even though ALS life expectancy is only 2-5 years. In the end, we found a house that fit our needs, after adding an accessible master bath and closet (which turned out to be enough decisions for us – do we want “light pewter” or “bay leaf” colored grout? Honestly, we didn’t care until we had to decide).
The Boyds have encouraged my positive outlook on life with ALS in other ways. They went on a cruise this year (no small undertaking with a trach, power wheelchair, and all the trappings of ALS). They splurged on a Temper-Pedic adjustable bed so they can continue to sleep side-by-side – as opposed to being relegated to a hospital bed, as so many ALS patients are.
Pat takes ALS progression in stride, which I fight hard. Take this FB post from September, typed with his eyes:
“i just flunked a swallow test so no more food or drink by mouth.the term is silent aspiration.this was the cause of all the infections this past year .i am good with this , antibiotics are bit rough. so love that ensure plus at 5 cans a day”
This isn’t to say he gives into the disease. He continued to stretch and exercise as much as he could (yay pool!) at a time when conventional ALS wisdom said to refrain from taxing your muscles. Paula credits that for how he has been able to live so long with ALS. As he wrote to me,
“my shrink told me the time will come when you can say no.i can’t do that [to] anyone .my life becomes smaller i always tried to figure where I would be in 6 months . that was wasted energy.”
So this weekend I’m racing the Historic Hillsborough Half in your honor, Pat. And not worrying about where life will be in 6 months. Your words remind me of another ALS warrior, whose number I will be wearing, when he said:
“Why is it an important race to me? It just is. It has been and always will be. I think when I’m sitting in a wheelchair down the road, I’ll know that I fought the great fight.”
Thank you also to the Hillsborough Running Club for selecting the Team Drea Foundation as your charitable recipient. You’re kicking off our next $200,000 raised for ALS research!