Monday, June 20, 2011
Feeling Useful and Useless at the Same Time
It's something I've known for nearly half my life as a constant trait that causes those who know me to always ask, "How's your Mom doing?". My mother was diagnosed with early onset PD when I was sixteen. I remember my parents calling me to the living room and asking me to sit on the couch. They had something to tell me that was so serious that it wasn't around the dinner table.
I was sure they were going to tell me they were getting divorced, because that was the worst possible thing I could think of to happen that would sit me staring over my right shoulder at the clock ticking, the pendulum swinging back and forth awaiting for the bad news to hit.
But then my mom fit her hand into my dad's and said that she had been diagnosed with Parkinson's Disease. I felt relief wash over my body, because they were still together. We were still the family I knew. So we can get through some weird sounding disease thing. My Mom looked fine. I didn't have a frame of reference on what PD was at that point because it hadn't been showcased on an ABC soap opera.
I clapped my hands on my knees and thought the family meeting was adjourned, but could still feel the tension in the room.
It's always there, the tension of what a disease brings to a family. Now and again there would be PD moments or the line of pills and jokes of how I was now the chauffeur for mom on trips to Kansas City. Mom and I participated in the Parkinson's Unity Walk in Central Park and I saw it grow through the years.
I also believe that Micheal J. Fox is am amazing hero who we often take for granted as a showman who makes us laugh or brings us comfort. He's brought me hope now and again in his speeches and the joy that I feel in a PD crowd when he speaks.
My mom had DBS surgery a while back and was able to cut her medicine in half and her movement improved. We lauded the surgeons at KU Med and I found myself eeking back into my sixteen year old self. That it was fine, we were the family unit I remembered and the surgery pushed back the reminders of PD.
Recently I had been noticing that mom's movements have taken more focus, her speech has become slurred (although granted my family does love a good mumble) and I had made what I had hoped were off handed comments to friends about how it seemed that PD was leaking through and around the DBS and medicine's usefulness.
The way that movements were slower as if running on a battery on low. The nerve endings from the brain out to the muscles in the body running on a circuit board that seemed archaic. Mom was still there joking about PD as most Parkie's do and I always love to be in on a joke. It's a device I've used since my grandma slipped away through Alzheimer's.
Make your loved one laugh and in that one moment you are with them somewhere that the disease can't get.
Last month though I caught a drive to my cousin's high school graduation with my parents. The drive felt different from the moment I slid into the back of the maroon Crown Victoria substitute (I refuse to remember the new car's make/model). My father, the eternal smart ass was being kinder than usual to my mom. We stopped at a small town gas station for the bathroom and the requisite acquiring of gum for my mom. I slipped into the Midwestern small talk and brought up my dad's yearly fishing trip in August. He mentioned I might need to stay with mom, because she would probably need help at night.
For those who are unaware the medicine cycle for some PD patients, ends with a 8pm kick back. This was why Micheal J. Fox had Spin City start taping early. It's when Parkie's are better equipped.
Take a moment to think about the muscles in your body. All of them. You wake up in the middle of the night and need to go to the bathroom... how many muscles do you call on? I understood why I'd be needed.
But most of all I could hear how tired Dad was in that moment. It put me on guard and I've been there for a month now. Observing, changing my behavior a bit to be nicer as well, more patient...
My good friend, Beth, was singing in the KC Women's Chorus and had told me that Mom would really like the music. I knew that an outing to KC would require driving, getting into a building, getting seated, and lots of people to maneuver around, but I was up for it.
I could tell the day was physically exhausting for my mom, but she did love the concert we sang along with the Shoop Shoop song, one she used to sing and spin around the kitchen with me. The linoleum helping our socked feet feel like we were gliding across some grand dance hall.
When we got back into the car on the way home through a maze of ramps and elevators Mom was sweating like she had run a marathon, which as her muscles were concerned she had done so her breathing was labored, but mine is from climbing three flights of stairs. I was worried about her being overheated, but she said it's a new thing the doctors are trying to figure out. The doctors had run a sonogram to see if that illuminated anything. (She said that she had come from the room and Dad asked her how it went and she said, "There's a Junior!" He was not amused. I thought it was pretty awesome.) She explained the feeling as your outside being cold, but the inside being hot and she was right her skin was chilly, but her body was reacting as if she was boiling inside.
As we got home and I helped get everything out of the car she stood in the kitchen and concentrated on smiling, thanking me for the trip and hoping that she didn't embarrass me too much. My heart broke a little, but I grinned back at her and said, "I've known you my whole life. If you haven't done it by now, you never will."
I had been her companion that day. I leaned in when she spoke to me and listened. I teased her when she said I was a good driver and two minutes later would tell me the direction I should be turning right before the exit as she always has done. I walked with her holding her hand without being asked. I was her companion.
Just like she had done before for me and how she still is to this day.
It's been a constant in my life. It defines how some people know me and my family. Its effects can make me feel useful and useless at the same time.
But it will never make me embarrassed by my mother.
That would have been the matching jumpers she made when I was a tow headed elementary school student. Actually no, we looked awesome in those. We pulled them off.