So…I’ve been remiss.
When I was in the throes of dealing with my SCDS pre-op, someone said to me on a Facebook support group page, “if you get well, you’ll be gone from here.” Well, there is something to that. My SCDS battle was a significant, difficult, frightening, confusing chapter in my life that I like to think I’m moving away from — so, dwelling in the past and facing those same emotions in others experiencing what I went through has not been high on my to-do list. I understand that sounds callous. I think I needed to find my own footing again. I hope to do better going forward, because my goal was to create a resource for people, which I did, and then I abandoned it.
So, hold me to task. Post, write, share! I’d be open to having guest bloggers write about their experiences. I’ve thought of making a documentary film. Let’s keep it alive together.
I continue to move forward with recovery, though my permanent hearing loss, severe tinnitus, and occasional bad days (and weeks) constantly remind me of what happened. I have regrets. If I could do it over again, I would probably have gone to Dr. Lee in Boston to do the procedure. When I wonder if I even needed it, I ask my family to remind me of how I was, and then I read my own blog posts, and realize that surgery was the right call.
Since I’ve posted, I’ve earned tenure as a screenwriting professor at DePaul University. I’ve made an award winning short film (below) about recovery from brain surgery, and an award-winning web series about terrible parent/teacher conferences. I do lots of yoga (which is great for strength, balance, and anxiety control), I coach little league baseball, and I travel some. To most people, I live a normal life. Compared to many, I live an amazing life. So I’m very grateful. There are even days when I forget all about SCDS.
Part of recovery, which is the message of my film, involves accepting a new normal. As a former athlete and driven filmmaker, I was never one to accept that I couldn’t be better and do better. I’m still stubborn that way, but have learned that accepting a new normal means compromise and not resignation. It’s been a lesson in humility that I am working to carry over into all aspects of my life.
In short, here is how I recovered, with full recognition of the privilege involved:
- Great job that has tremendous flexibility.
- Great insurance.
- Great city with world-class medical infrastructure.
- Supportive, loving, patient family and friends.
- Vestibular Therapy
- Cognitive Therapy
- Physical Therapy
- Writing and Filmmaking (which worked as therapy/processing)
- The desire to not be deterred in recovering a version of life I recognized.
- Betahistine every day.
- Alleve when I feel head pressure.
- Low-dose Vallium when it gets real bad.
- I tend to avoid crowds.
- I find rest and quiet when I need it, as much as I need it.
- I avoid alcohol and caffeine.
- I avoid situations that make me dizzy.
- I avoid noise, and when I can’t, I wear ear plugs.
- I work hard to practice balance and breathing control as often as possible.
- I stay on top of my health in every way I can.
So, that’s where I’m at today. If you have questions, let me know. If you want to be part of this, let me know. In the mean time, watch my short film about my recovery: