Sunday, October 25, 2015

Through the Windshield

      This morning before church Michelle and I lay in bed flipping through our phones. I was adjusting my fantasy football lineups when Chelle pulled up a Timehop photo of us from one year ago to the date where we were at the apple orchard. I was standing upright with the use of a cane and had my AFO's strapped to my ankle to keep me from tripping over my toes. 
      I began to think about how much has changed since that day. I knew I had ALS at the time, but things were different. I was able to dress myself, roll over in bed unassisted, cook, raise a pint of beer to my lips, write, get on and off the couch, shower myself, I even drove us to the orchard in my Civic. Those capabilities are all in my rear view mirror. I now need a straw to drink, wheelchair to move, assitive tech to adjust in bed, a shower chair, and a handicap accessible van to get anywhere. These losses wear on me at times and are accompanied by lots of cursing and tears. 
      $35,421.67. That's a heap of money. That's also the amount of money the Gronk's Grace Army has raised in less than a year for others like me fighting this battle and experiencing the same losses I have. I have rolled onto Capitol Hill to raise awareness and demand change from our representatives to help support PALS. We bought a house to call home, where friends and family can come and be loved. We brought home Wrigley, our dog who we call Son. I give all my nieces and nephews rides on my wheelchair. I started my seventh year teaching and am still teaching to this day. Friends, family and strangers raised over $25,000 in GoFundMe funds to support our needs going forward. 
      Even with the terminal diagnosis, the Grace I've experienced since that day back in October is such that all I can do is be grateful and keep my eyes focused on the windshield. Looking back through the tiny rear view mirror won't get me anywhere. The windshield is full of Grace. The future is going to be great because I know God is in control. I've let go and let God. 

Monday, October 12, 2015

Wakefulness Slumber

      I was cruising the streets of Oak Park in my '92 Oldsmobile Achieva on a bright blue fall day. Every tree was a different shade of orange, yellow and red, mixing well and smelling of soil. Cate and Rosie took over stereo duties and cranked some David Banner. The bass rattled as we cruised East Ave on our way to DiNico's Pizza. I was feeling 17 again, and then I felt a fire burning in my left foot, then it shot to my knee, my hip, DiNico's left my mind, Cate and Rosie vanished and I awoke with a silent, "son of a bitch," in my head. 
      This is an every night experience. I take solis in my dreams where I get to run, drive, climb, and dance, things I no longer get to do because of ALS. I escape this bullshit and enjoy the world in ways most people take for granted. These dreams however get cut short all too often with a leg cramp or growing pain. Imagine getting a Charlie horse but not being able to move to release the pain. I try with all my might to adjust my legs on my own without waking Chelle. She does so much for me during the day I want her to be able to sleep peacefully. I spend many hours awake, in pain, trying to think happy thoughts to make the pain subside. Shenanigans with friends, French fries, beer, boobs, running, Christmas, all go-to happy thoughts, and then I pray. I pray that one day this disease will leave me, and then my angel Chelle swoops in and rescues me, pulling me onto my side to eliminate the pain, once again embracing the Grace around me.