
Today was a home day. Sort laundry, hydrate. Catch up on emails, hydrate. Make doctor appointments, hydrate. Apparently today was a day to catch up on tv watching, and yes hydrate: I have a race fast approaching. About the tv watching....
This afternoon I had the tv on and saw a segment on Nick Jonas. He apparently is one of the Jonas Brothers and they, apparently, are people to get excited over. Nick has diabetes. Managing diabetes while on stage and on tour is quite a trick and in the segment of whatever show was on, he talked about just how hard that is. He is working with Bayer to create medical dogtags with lyrics from one of his songs that read "A little bit longer and I'll be fine." Having just come home from diabetes camp, I was touched and intrigued. Just having worn a pump for a couple of days (saline - not insulin) I cannot imagine having to be tied to a pump or injection syringe 24/7 for life. There is no break, just a non-negotiable rule that if you don't manage highs and lows all day every day, it will end badly for you.
Earlier today, i was folding laundry and James Earl Jones was on The View. James Earl Jones: the voice of CNN, the voice of Darth Vader, a voice that stutters - like me. I had heard he never, ever did interviews to protect his livelihood but here he was on The View chatting it up. I stopped and stared - and cried. Approximately 3% of the adult population in the U.S. stutter. It can be one of the most isolating, frustrating, despairing, depressing, disorders on earth. I have been exceedingly blessed to have always had great support. But I face the dark place from time to time. When the mouth locks and all of my tricks fail, talking is an awful place to be. I like Nick Jonas's dog tag - a much nicer expression that what I sometimes want to snarl out at people, "if you'll just give me a frickin' minute, I'll talk for myself - thank you very #$%^@! much." Aaahh that is why he is famous! "A little bit longer and I"ll be fine."
My exceedingly sweet husband brought home the current issue of Wired magazine. It contained an article on spasmodic dysphonia that afflicted Dilbert creator Scott Adams. Spasmodic dysphonia "SD" affects the basal ganglia of the brain and your speech abandons you. Without warning - yikes! The article was amazingly articulate on describing how speech takes on rules and every day the rules are different. One day you can speak, the next you cannot. One day Scott Adams could read Dr. Seuss, the next he could not. One day singing helped: nope - not the next day. I could relate to "the rules". Stutterers have rules too. One day "W' words are impossible, the next day it is words that start with "T". The best part - "the rules" do not arrive with breakfast. Knowledge of "the rules" arrive when they damn well decide to show up. I used to order a latte every morning on my way to work or school to learn "the rules" for the day. That trick didn't always work but at least I got a warm cup of comfort out of the deal.
I spent quite a bit of time with P recently and had the amazing experience of being with her as she came out of a chemo cycle. From curled up in a ball in bed trying not to moan and scare me to quietly asking for popcorn with lots of butter (the smell of popcorn helps), to jumping out of bed Sunday morning all chirpy and bubbly and stating "I think we should walk up the street and get a bagel". She called the other day to share she can travel in a couple of months and wanted me to fly with her. The phone call ended something like "a little bit longer and I"ll be fine."
I have talked to a lot of people facing non-negotiable health issues: from Celiac to chronic pain. Diabetes to depression. It took Scott Adams 3+ years to find a medical answer. For those with diabetes, cancer, a stutter or whatever else, we are still waiting. We can all learn a lot from Nick Jonas, Scott Adams, and James Earl Jones. We all have a challenge to face - and manage. We can learn from, and be gentle with, each other.
A little bit longer and we'll be fine.







