Rolling With The Punches

Last Tuesday, the 24th, was my 3rd Activation Day at Johns Hopkins. The whole day started off terribly. First, the 6:30 morning news reported two accidents, both on my planned route to Baltimore. So I shortened my workout and made a mad dash shower, get dressed, and race out the door 30 minutes before I planned to leave. I was on the road by 7:30. Matthew, the master of back road travel (its a Novinger thing), plotted a new course of travel for me which included lots of winding back roads. His strategy worked and I made it to my appointment on time. However, on the way up, a bad thing happened. Remember how I mentioned my processor (i.e. hearing aid) has three different programs on it? While up until that morning, I had only used one program...not on purpose--I forgot I had two other programs to choose from but I also enjoyed the program I had been using for a week. Well, it suddenly occurred to me that I never used the other two programs so I decided to switch over and see what it sounded like. Big mistake.

The other two programs, by default, are MUCH louder than the program I had been using for a week. As soon as I flipped over, my face began to seizure and twitch. Needless to say, I immediately turned the processor off. I wanted to verify that the processor elicited that response so I carefully turned it back on and sure enough, as soon as I heard anything, my right eye seized up, my upper right lip twitched, and the muscles on the right side of my neck spazzed out. It was terrifying to be completely honest. I left the processor off until I arrived at my appointment.

After describing what had happened, Ryan smiled knowingly and told me the seizures were a reaction to sound that was simply too loud. The seizures and twitches were my brain's gag reflex, in other words. Since I did not turn my volume level down before transferring to the other programs, my auditory nerves were shocked by the intensity and loudness of sound. He assured me the twitches and seizures would go away in a few days. But, since they had flared up, we had to locate the electrode causing the twitches and seizures. This was the most unpleasant experience in recent memory. He would produce a rhythmic sound and increase the intensity until my face began to freak out again. He did this several times...for each electrode...and I believe I have 4. Ugh. For an hour, my face was all over the place. But the appointment was not entirely negative. I did leave with three new programs, expanded to include new frequencies and Ryan's assurances that he feels I'm making solid progress.

From Tuesday night until pretty much yesterday, anytime someone laughed, dropped a book, slammed a door, or if I talked, my right eye would twitch. It made me so self-conscious and absolutely drove me crazy. Its not fun to laugh, then grab your eyelid to keep it from spazzing out. But it did fade..and this morning, almost a week after the first seizure, I can say they're down to about maybe one or two an hour. A definite improvement.

Now onto the good stuff!!! First, my dad pointed out last week on a phone conversation that he thinks I'm talking better. Matthew concurs! This is exciting because that means I'm more aware of my own speech, and therefore, am more cognitive of how I'm shaping sounds. This is especially true with words that have very specific sounds like "ssh" and "cchh" and all of my "ssttt." While my first hope with this experience was to gain better sound comprehension, I'm excited to find that I'm gaining some wonderful side effects of improved hearing.

Saturday, Matthew and I went mountain biking. I'm able to wear my processor while biking so I got to enjoy my heaving breathing and little gasps as we tumbled down hillsides ridden with rocks and overgrown tree roots (what a great sport!!!). Then, while we were taking a break, I was just listening to the forest around me...and I could hear all these wonderful variations of sound. The first thing were the birds...I could tell there was a distinctive different between my friend Mr. Bird who lives outside our apartment patio, and all the birds in the forest. It was a happy moment for me to sit on the ground and hear all this life around me. I love these moments.

Sunday...Sunday...was AWESOME. My processor came with a few different parts--one of which is a small hook that has a little output for a wire. The wire can be inserted into a computer to listen to music, a phone for a conversation, or an Ipod. Yesterday, I decided to experiment with this feature by hooking my processor up to Matthew's Ipod. Oh my gosh...I've never heard music so clearly! It feeds directly into my hearing aid, just like music would feed directly into your ears via ear phones or head phones. Just a tiny wire made this happen! Sundays I go for long runs that typically last between one and two hours. During marathon training, however, I can be out there for two to three hours at a time...so long runs are looooong. I've trained myself to daydream, problem-solve, plan, pray...whatever to entertain myself as I run and run and run and run...but still, there are moments of boredom when you just wish you had someone to chat with...or....music to listen to! Yesterday, I took the Ipod with me on my long run and I had the absolute best run ever! I made a playlist with random songs just to try it out... when "My Humps" came on, I literally was shaking my butt here and there...then Sean Paul's "Temperature" came on and I'm rocking to it with my body...then some good country, then a big Broadway ballad I tried to (in a gasping, panting way) sing along with...it was awesome. Before I knew it, I was done with my run and I was on cloud 9. I've never worked out to music before so I never appreciated the motivating and entertaining factor it can have! I'm so excited to create a workout playlist and take it out with me. I'm running a half marathon in September and then the Marine Corp marathon in October so I'll be doing long runs all summer long. I need playlist ideas people!

Last night, I talked to my mom on the speaker phone and she was sounding better to me. I could pick out words she was saying without Matthew's help. I think I'm back to where I was pre-surgery as far as my sound comprehension goes with people. I'm confident I'll continue to improve. I think I'm overcoming my first bump in the road, as far as the twitches go. During moments of frustration, I try to remind myself to be patient with progress. This is a race I can't win by sprinting...baby steps. =)

Love to you all!