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.  

Purpose

     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. 

Let Go, Let God

     Pneumonia ain't no joke. It's especially brutal when you have ALS and can't cough worth a damn. I spent a week in the hospital being poked and prodded, tubes down my throat sucking out flem and having doctors in and out of my room talking about "what if's?" They asked about a tracheostomy, which I am opposed to. It's a hot topic with ALS patients right now, but for me my future in heaven greatly outweighs being completely trapped in my body. Michelle signed many Do-Not-Resuscitate forms before my Bronchoscopy procedures. And I had to lay in a bed for 8 days being told when I could eat and drink with no shower in sight. It was the scariest time of my life. I thought it was going to be the end, but I poured all of my hope and trust into God and he made it clear I'm not done yet, but even if I was I would be ok with it.
     I am now back home with Michelle and Wrigley, the IV's removed from my arms, my ability to breathe working its way back, with the help of numerous machines.  I watch the trees wave in the wind, listen to the rain, sleep next to my beautiful wife, I feel like a person again. The mind fuck that I face is that of course I'm happy to be home and feeling better, yet how great can I feel when I still have a terminal illness with no cure. Being in the hospital for a week really zapped the small bit of strength I had left. I'm having trouble driving my wheelchair, my neck feels weaker and now I have even more nurses stopping in to make sure I'm maintaining some sense of  "normalcy."
     It's hard not to burst into tears when I think about my future. However, when I start thinking dark thoughts I dive into God's word where He promises pain and sickness is not permanent and that He will never abandon me no matter how miserable the experience may become. I don't know when my last day will be but I do know for sure that when that day comes I will be consumed with Grace and made anew. On that day I will conquer ALS.
  

Chapters

     The summer is officially over by my standards. Michelle has returned to work. Last year at this time I would have been just getting into the swing of things after my honeymoon period with my students. Reading stations would be in full swing, benchmarks would be set, behavior interventions under way, scrapping organization techniques that flopped, my fellow teachers know what I'm talking about. I would be on a double dose of caffeine every day and begging Michelle every morning to hit snooze to no avail. It's not last year though, I've retired and am in a whole different world. A forewarning to those who may already have a tear in their eye, this blog post isn't for dwelling on the past. I will always be a teacher as I've said before, my curriculum and environment has simply changed.
     My days begin differently these days. I give Michelle a quick kiss before she leaves and then I sleep for three more hours before my PIC (Partner in Crime) comes to help me with all the physical shit I can no longer do. My PIC, Emily, is really more of a blessing God provided me for my next chapter. Em cleans the house, waters the plant, feeds me, does laundry, helps me run errands, plays with Wrigley, the list goes on. She is a stress killing superhero. Em frees me up to focus on the priorities. Students needs used to be priority number one for me, now my priorities are much simpler.
     Now I focus my attention on Love. Keeping in touch with those that I love. Telling them I love them, showing them that I love them, and connecting with those that need more love. I spend more time reading God's word. I brainstorm ways to advocate for those with ALS and for families in the Stateline area that need love and support. I also don't waste my time on bad TV or music. I've caught up on shows, and discovered excellent musicians. Don't get me started on my awesome Fantasy Football teams. I eat what I want and only drink great beer, I ain't got the time for sub-par cuisine and crappy beer.
     I know there will be days when memories come creeping back into my mind and make me feel sad, but that ain't today. I've got a new curriculum to follow, a curriculum that is ever changing, a curriculum bursting at it's seams with Grace.   

Magnificence

     I spent the morning in a self-implosion mess. I have these mornings every now and then, I mainly attribute them to the expiration feeling that haunts those with ALS and the fact that I know I drift from God. There are times and places where I feel intertwined with God. My kitchen where I make calls to healthcare service offices, send and respond to dozens of emails and messages, advocate and fundraise for numerous ALS organizations is not one of those places. I let stress and caffeine take over and spiral away from my happy place to feeling more like a superficial cog in a pointless wheel. Yet, only a few days ago I was in that place where I was intertwined with God. I saw a magnificent reminder that our lives aren't random, that our dreams for this world fall way short to God's plan. I was immersed in nature in Door County.
     Naturalist E. O. Wilson said, "nature holds the key to our aesthetic, intellectual, cognitive and even spiritual satisfaction." Yes Door County is inhabited by many kitchy shops, restaurants and wineries for tourists to flock, but it also has one of the more diverse and fragile ecosystems in the country. God's presence is felt when you see the Sugar Maples, American Beech, Yellow Birch, Eastern Hemlock, Ironwood and Red Oak trees that litter the peninsula. There are thousands of wildflower species growing in every direction, sometimes right through rock. Dozens of violets, Trout Lily, Jack-in-the-pulpit, Dutchman Breeches just to name a few. There is 75 miles of coast on either side of the peninsula where the water is clear as glass ready to reflect the most beautiful colors you've ever seen. Creeks and wetlands with fish, toads, turtles, dragonflies, Blue Herons, Bald Eagles, fox and white tailed deer visit. Sunsets where you feel God's presence in the arrays of colors that plaster the sky like a masterpiece. Every season offers magnificent beauty and serenity. Proof in every sight that we are not in control and that not having control shouldn't be scary but should bring satisfaction. It's also proof that God prefers diversity in his aesthetics, that differences should be celebrated.
     On mornings like this one when "control" feels like it's slipping through my fingers like sand I need to hit pause and reflect on the aesthetics of this world. Glimpses of the beauty and serenity I will one day be immersed in forever. No stress, no pain, only intertwined peace, love and magnificence. Grace all around.

Pictures : Top;tree intertwined with creek bank in Fish Creek. Bottom; Sunset in Ephraim, Wis.

Battle

     I've been brainstorming how I can make my Ice Bucket Challenge this August one for the Hall of Fame. How hard is it to rent an elephant? Should I wear a banana hammock? Do I know anyone famous? I am sincerely proud of the grassroots movement the IBC has become. The millions raised around the world and the thousands raised by the Gronk's Grace Army is nothing short of spectacular. The fight and love shown by so many has led to the discovery of the NEK1 gene that associates with ALS and gives researchers a target for genetic research. This is a paramount discovery and something that should be celebrated.
     However, this discovery is not a cure. It is not a treatment. People just like me will die every 90 minutes today, tomorrow, and the days after. This is a viciously complex disease that is attacking us all differently but with the same certain outcome, death. Millions of dollars are still needed to bring potential treatments to clinical trials. Advocating to Congress and our local officials is crucial to change medical policies blocking immediate care for those living with ALS. The same passion for grassroot movements like the Ice Bucket Challenge and the #WhatWouldYouGive campaign are essential for our ongoing war on ALS. We may have won a battle but the war is far from over.
     If you want to be a part of the solution and help those with ALS who desperately need your help, consider being a part of these awesome endeavors. 
Take action with ALS TDI
Register and donate to the Rockford ALS Walk
Join the What Would You Give Campaign

God's Grace be with you. 

Duct tape

     A week ago I went in for my three month Dr appointment, these appointments could be monthly but after I describe an ALS clinic you'll understand why I don't go every month. Clinic starts the same as any appointment, nurse checks your blood pressure, asks you about allergies and where your local pharmacy is located, you know, the basics. That's where basics end. Now it's time to run the gambit. Dietitians, speech therapists, social workers, breathing coordinators, occupational therapists, wheelchair technicians, and your neurologist are all coming your way. Don't get me wrong, I'm blessed to have them all at my fingertips in one location, most people with ALS aren't so lucky, but it sure as shit is intimidating.
     All of these professionals sit with you and run tests, ask questions and discuss what you can and can't do anymore. Unfortunately for us with ALS, the can no longer do list always increases while the can do list gets shorter. Medical professionals have the challenge of fixing people when they are broken. However with ALS, because there isn't a treatment or cure, they are left with very few tools for a monumental job and they know it. I feel at times like an airplane they're trying to keep in the air when the wings snap or they lose an engine, with duct tape. They aren't giving up on you but they also aren't going to be able to keep the plane fly worthy for long.
     This is where you as a patient start making some tough decisions. Do you want to be covered in duct tape? A little duct tape might be okay, maybe? Try a c-pap machine while you sleep, maybe a new steering column on the wheelchair, maybe cutout French bread from the diet to avoid choking, these appointments turn into giant brainstorming sessions to try and fix you, while knowing the inevitable isn't promising. For three hours you have to actually acknowledge you have a terminal illness and decide how much duct tape you are comfortable trying. I usually leave these appointments pissed, wanting a stiff drink. The Grace catches up to me later. I remember that I have hundreds of people looking out for me, I can still blare music, drink beer, speak, write, and love. The Grace still outweigh the "can'ts." Bring it on duct tape.