Thursday, April 3, 2014


“Can you repeat what you just said? I think I heard you but I need to hear it again.” A tilting and twisting of the head, closer attention, focus on the words that come out of someone’s mouth…it all leads to understanding.

Recently a friend of mine, Carolyn, shared a story from her life with me. Carolyn is a brilliant artist that lives near Seattle. She works in watercolor and does beautiful collages. She also works in interior design. I love her work and enjoy greatly the pictures she shares with us.  At one point she smashed up the hand and arm she uses to create.  She had a choice. Either she gave up what she loved or learned to use her non-dominant hand to keep doing what she does well. She chose the latter and as difficult as it must be for her, it has no detriment on her art.  She has been an inspiration to me as I learn how to compensate for the fact that with Parkinson’s my hands shake all of the time.  Without knowing it, she reminded me that I have done this before and I can do it again.

“Tom. Tom. Tom! Stop watching the TV! We're trying to talk to you.”

When I was in eighth grade my best friend, Kevin, asked me to join the chorus with him.  I said, “I can’t do that.”  He said, “Sure you can. I have heard you sing. You’re good at it.” I asked, “Are you sure?” He said, “Yes, and I’ll take care of you. We all will.” I joined the chorus and then in high school was a part of the concert choir. Kevin was right. People took care of me. No matter where the director put me in the group, my big friend, Flanagan, would grab me and move me to an end seat on the director’s left. He would say, “I think it is better if Tom is here.” Flanagan was well-respected so the director always let me move to my preferred seat.

My friend, Kevin, had perfect pitch. My other friend, Mike, worked in a sound studio. When I got a stereo as a graduation gift they came to my house with an equalizer. They had me sit at my desk, on my bed, and other places in the room. They then balanced the sound specifically for me. Anyone else who came in the room probably thought it sounded crazy but for me it sounded wonderful.

“Tom you are talking a bit loud. Also try not to cut people off before they are done speaking. Just wait and watch, and then take your turn.”

I never learned to swim. I can enough to save my life but no more. I don’t like my face in the water. My mother was the same way. She almost drowned as a girl when she got trapped under a boy at the civic pool. After that she would not take a shower or go into water deeper than her ankles.  One time we were at the local swim club and a neighbor tried to throw her into the pool. My father leaped up and yelled, ”Stop!” He took her in his arms; she was shaking. He said, “You don’t understand.”

We all took swim lessons at that pool until one day, crying, I said “Mom, I don’t want to do this anymore. It makes my head hurt.” She toweled me off and said “You mean, Tommy, it makes your ear hurt, don’t you?” I said, “Yes.” She smiled and said, “OK, we’re done.”  Later on my dad taught me how to float on my back and to side swim but that’s all I have done since then. I will put my face in the water if I am diving or snorkeling, but I have to force myself to do it. In those cases desire outweighs duress.

When we were in high school we had to tread water for 3 minutes to pass a swimming class. My friend, Cheri, who I love and is like a sister to me, came and said, “Don’t be afraid. I’ll make sure you stay afloat.”  During the test, whenever I started to look like I was sinking, she grabbed my arm and pushed me up to the surface. Cheri has always been nice that way.

“Tom do you want a seat? There’s one on the end?”…“No. I’ve been sitting all day. I’m fine just standing here in the middle if that is alright with you?”

One day I was working in the animal lab in the psychology department at Illinois. My job was to perform lobotomies on rabbits. I cut one of their membranes and then observed how it took for them to heal and blink again. It taught us something about brain injuries in humans. One day a professor, Joe, who was very interested in how senses affect psychology, came up to me.  He asked me if he could look in my ears. I said, “Sure, Joe.”  When he was done, he asked me, “So, how long have you been deaf in that one ear, and what happened?”

“Tom! Turn down your radio! We are trying to watch a show in here!”

Joe said to me, “Your eardrum is blown and you have major scar tissue in there.”  I told him” I lost most of my hearing in that ear when I was seven. By the time I was 13 it was gone for good.” I told him about how my siblings and I, when we were kids living in Florida, took swimming lessons in a lake. I developed a chronic ear infection from the bacteria in the water. It got so bad my ear would bleed all of the time.  By the time we figured out with our doctor what was going on, it was too late. Joe shook his head. He said, “Well, at least you compensate nicely.”

“Tom, your alarm is going off! Can’t you hear that?”...”No, not so much when I am sleeping on my side.”

Compensation is an interesting phenomenon. I don’t even think or notice that I can’t hear out of one ear anymore. It is just a part of who I am. Many people have suggested that in losing my hearing it would result in making other senses more acute. That hasn’t really happened. The same is true with the Parkinson’s. I don’t suddenly have bionic eyes that see long distances, a hyper-sense of smell, or other powers.  I just figure out what I need to get done and do it in the best way I can. Compensation is really about understanding your weaknesses and then finding out how best to do things no matter who you are. I think we all need to do that.

Sitting in the back seat of a car. "Tom, can you hear me?”…“Yes. What did you say?”…”I told you that I love you.” …”Good. That is all I really need to hear.”