I wasn’t sure what to expect when I drove up to Farmington to meet Nick Stanley. And my reasons for wanting to meet Nick, I’ll admit, were selfish. It’s been a tough year, business-wise. My positive energy and go-get-em-ness in ‘pioneering’ music therapy in Maine was starting wear off; not getting to use my training for hospital work was starting to wear on me. A sluggish August without a lot of work combined with some personal losses sent me looking for inspiration. And boy, did I find it!
Nick Stanley’s name had come up a few times on the facebook feeds of fellow musicians/friends Dave Gutter and Ryan Peters. Nick is restricted to his bed because of spinal muscular atrophy (a recessive genetic disorder causing muscles to atrophy), but has the moxie to let his favorite bands know how much he likes their music. And they showed up to perform in his living room! Stanley Station, one of the coolest venues in Maine. Talk about self-advocacy. Nick and I share a love of the Rustic Overtones song “Iron Boots”, so he showed me a video of the performance of that song at the house.
The first thing I noticed about Nick (besides his smile) was the space he’d created. The ceiling above his bed was covered in photos, artwork from friends and family, and show posters. The second thing I noticed was how open and honest Nick was. I’ve seen clients with physical losses go in either direction- super positive to the point of delusion, or really depressed. Both are totally normal, and of course it’s difficult to find a balance. Nick, however, is honest about his reality and willing to talk about both the good and bad parts. This kind of attitude seems to be the key to moving forward in life.
We talked about favorite bands, eating through a tube, the importance of having a go-to karaoke song, dogs (Nick has really sweet pets, so I played him the song I wrote about my favorite pup), tattoos, and how to stay positive. Nick said that because SMA is degenerative, he’s had about 14 years to process losses and focus on the things he can still do. (I can name a bunch of them… sing, make me laugh, create lyrics, inspire others, spread love and joy) Nick said that on his bad days, the reality of what is physically happening brings him down but music can help pull him back up to where he should be. He said being positive is a mental challenge- it’s all in your mind.
I showed Nick the trusty music therapy instruments that are always in my car- the ocean drum, which sounds just like crashing waves, and the wing (which is sort of like a tiny vibraphone). Then I took out the guitar and formed chords while Nick strummed. We sang “Here Comes the Sun” and “Three Little Birds” by Bob Marley together.. “‘cause every little thing, is gonna be alright”.
Nick wanted me to share the song “Right Me Up” by State Radio, to all the music lovers out there. He called it a very inspiring video, and it is. (check it out here) I have another song to share that’s even more inspiring than that. It’s called “Can You Hear My Eyes?” and Nick co-wrote it! (click here for link) He wrote this song because for a time, it was believed that he wouldn’t be able to speak again. I’m so glad Nick *is* able to speak, but even if he couldn’t his face is so expressive that I think you can indeed hear his eyes.
I had wanted to start featuring music therapy advocates on this blog, but Nick is much more than that. He’s inspiring to music therapists, to musicians, to doctors, and to clients. If life gave this man lemons, he not only made lemonade- he’s dishing it out to the whole block for free.