Sunday, October 30, 2016

Tap, Tap

     Ever since I left the hospital at the end of September I've been completely relying on others to drive and control my wheelchair. Having someone else control a Power-chair ain't easy. My chair has six wheels, weighs 375 lbs, and turns on a dime. A few holes ended up in our doors, fabric was torn, and many toes were crushed. I really had to be patient. My chair is a part of me at this point and it was hard to relinquish control of really the only thing I could physically do anymore. I was completely at the mercy of others. I could have succumbed in fear, got depressed, stopped giving a fuck, and honestly there were moments I felt that way. However, thanks mainly because of my wife, I leaned heavily into Jesus and His word. God had made it clear that I still had a purpose here on Earth when he healed my pneumonia, so who would I be to quickly forget that and throw a pity party? Prayers and reflection led me to make a concentrated effort to lean on what I truly value, relationships, in this time of need.
     I made it a point to reach out to folks I had been putting off, said more meaningful words to those close to me, and connected with ALS advocates. I strengthened slipping friendships and was showered with love and laughter from those closest to me. I also made some important connections with Team Gleason and the ALS Association that lead to an awesome opportunity. These groups worked hard to get back some independence for me. They made several calls and collaborated to provide head controls for my wheelchair. A Quantum technician came out yesterday and hooked me up with a head array that allows me to steer and control the tilt features all with simple taps of the head. I haven't been able to control the tilt function in over a year, even when I was using my hand to drive. I've been geeking out all morning. This amazing blessing I received is yet another example of God's Grace that is ever present, good times or bad, you can always find His Grace when you lean on Him.  

Thursday, October 13, 2016


     Weeks removed from spending eight days in the hospital with a horrible case of pneumonia I've had time to reflect. Michelle and I have had deep discussions, we've spoken to our pastor about purpose and laid out all our prayers and worries to God. Michelle has seen every terrible thing ALS has hit me with along the way, and admits I looked the absolute worst in the hospital. Laying on my back day in and day out, coughing incessantly, gasping for air while constantly being filled with medicine and fluids.  I felt the end might be near. Suggestions for a trach came up as the only way to heal me, however this goes against my wishes so Michelle and I found ourselves signing off on hospice and heading home. All things pointed to a regression or even death. At home, my body struggled to fight off the virus. I used all the strength I had to kick the pneumonia and clear my lungs. I now have no independence. I lost all strength in my hands leaving me unable to move my wheelchair. I struggled with what to do with my life and my purpose. God made it clear to me there is still significant purpose to my life, regardless of ALS. He helped me restore my kick-assness.
      I decided to approach everyday like an old retired dude. I intentionally leave tasks on the to-do list, I read reviews on internet purchases before making decisions, I have bird feeders where I keep tabs on birds, and watch The Amazing Race. More importantly and seriously I find purpose in being a teacher. My teaching subject has changed over the years, as I now find my content written in red.
      One thing I know is ALS can never take my ability to love. I make it a point to reach out to those around me, to keep relationships strong. Intentionally reaching out to those in our lives to give love can make a major impact. It is another purpose for life.
     Pneumonia didn't take me out. God's Grace healed me. My life has purpose. I would be selfish not to give the days I do have left all I've got. Today it might be a Facebook message to a fellow person with ALS, tomorrow morning a prayer for a friend I know who is struggling, advocating for the next ALS fundraiser, or playing with my nephews. Let love in and give love back. If you're reading this you definitely have purpose, you're still here on Earth, seek that Grace and embrace it.