A few years ago, in my 20s, I did an interview on another blog. I thought it would be a good idea to update my answers. Plus, I’m running out of topics.
Tell everyone a little bit about yourself.
I’m in my 30s. I have a master’s degree in theology. I work full time as a speaker and writer. I also contribute to medical education and improvement of medical care for people with complex and chronic health conditions. I also have a few part time positions. I live on the East Coast and still prefer to keep things low key. I have fully embraced my introversion and often don’t get out of my PJs to get work done.
Can you share a little bit about your CP, and what kind of therapy was most helpful for you growing up?
I have Spastic Diplegia. I’m a GMFCS level 2 (last time I checked). I had PT at least twice a week from roughly 1-15 years old. I can’t say how helpful was or not because I didn’t have the opportunity to try anything else. These days I swim (on my own and with a coach) and go to the gym (with a trainer) 1-3 times a week, depending on my schedule.
How has having CP affected your life, do you think?
It’s still hard to say how CP affected my life growing up but I do think it affects my life more now than it did even a few years ago. Part of it is by choice, because I make a living by talking about the fact that I have Cerebral Palsy. The other reason is that although CP doesn’t get worse it does make aging more interesting. I have more difficult days with joint pain, spasms, etc than I used to have (I think). I’m doing more to manage my CP than I had been, just to keep myself in the best shape possible.
What’s been your greatest success?
I still think I’m waiting for my biggest success but getting a post grad degree was a big success. Also being able to use my live with CP to improve the lives of others with CP means a lot to me.
And what’s been your biggest challenge?
My biggest challenge depends on the day, if I’m in a lot of pain my biggest challenge can be getting out of bed, other days it’s trying to figure out the best way to get to a speaking engagement, sometimes it’s the metal challenge of getting through a swim practice or workout. Luckily my schedule is flexible enough that I can make adjustments when needed.
What’s your biggest aspiration?
My biggest aspiration is to have a career where I can sustain myself with as little assistance as possible. I really like being involved in medical research and education from a patient prospective, so I’d like to stay involved in that in some aspect. I also may teach at some point in the future, what I’ll teach is still a work in progress, but it’ll happen.
What advice would you have for parents raising kids with CP?
They probably don’t realize they’re disabled as much as you do so treat them like a normal kid as much as possible. Don’t lower your expectations just because they have CP. Don’t take what other people, like doctors, as gospel truth. There’s a lot going on in terms of care and treatment for people with disabilities and chronic medical conditions so what you were told five years ago may not be true five years from now. Seek out multiple opinions and do what’s best for your child don’t be sold on the “in thing” to do.
So, there you go, some of my answers are different, some are mostly the same. I’ve learned a lot more about myself and about Cerebral Palsy in the last few years. Oh, to be in my 20s again, or not, sometimes being young and stupid can double edged sword.