Thursday, April 2, 2015

April of Last Year

      I'm on spring break at the moment with lots of time and coffee on my hands. Rather then binge watch episodes of The Office that I've already seen or watch repeat episodes of 19 Kids and Counting with Chelle I thought I should turn to writing.
      A whole hell of a lot has changed in my life in the last year. I changed jobs, moving on from my awesome Prairie Oak family where I came into my own as a teacher and made lifelong friends, to WPES where I have become family in such a short period of time that it feels like I've known these people for years. My love for teaching and advocating for kids with special needs has never been more charged. We moved from Elmhurst out to Roscoe for a few months where we rented an apartment from a bat shit crazy landlord as we scanned the area for a real place we could call home. After seeing 40+ properties with our realtor and nonsensical arguments with that landlord we found a house we could call home. I'm now proud to say I'm finally my own landlord and have a place of my own that Michelle, Wrigley and I can grow into and enjoy.
      April, 2014 shit hits the fan in terms of my health. At this point I'm starting to walk with a limp, running ain't happening, I had excruciating leg cramps at night that couldn't be cured with milk, water, Gatorade, or even mustard. I challenge you to eat a tablespoon of mustard without puking. So I go to see my first specialist. I had a bad vibe from this dude from the get go. His office smelled of old toothpaste, it was dark and dingy, bad vibes all around. He assessed my leg strength and within 20 minutes without any solace he dropped the bomb, "You have ALS sir." Remember the movie Saving a Private Ryan? The scene where Tom Hanks is taking cover on the beach of Normandy and everything goes into slow motion and the ear piercing buzz is rattling his brain, that's how I felt. Michelle and the Dr. kept talking but I heard nothing. Nothing until he asked, "do you have life insurance?" In my mind I was jumping across the Dr.'s desk and beating the crap out of this guy. I was mad at him, I couldn't believe he could say something like this to me, I blamed him. We left the office with information about tests we would need to do to try and confirm or disprove this diagnosis. We went back to our apartment where I drank right through a case of Sam Adams with a few close friends not knowing what to do or say so I just got hammered.
      A few days later I'm sitting in a hospital getting tased by a student doctor with an EMG (Electromyograph) test. This test assesses the health of your muscles and nerves but this dude is literally tasing me in different parts of my body. This test is usually just done in the hands to assess if you have carpal tunnel syndrome. The student doctor had no idea what he was doing and kept raising the shock power and hitting me with voltage in the neck, knees, elbows, etc. Those of you that know me, know that I use colorful language at times and I fired off some choice words at this rookie before he finally got his boss and he did it right. The CT scans followed. As did the X-Rays, cortisol tests, MRI's, bone scans, and enough blood was drawn to provide blood transfusions for all the kiddos in 19 Kids and Counting. I had to do a piss test where I carried around a brown jug to pee in and keep on ice for 48 hours. That one was probably my favorite. "Hey man, what's in the jug?" Have fun explaining that to people. Mind you I didn't do all of these tests only once, I did them two or three times between two different hospitals to get the second opinion on what was going on with me. Prior to this I had never set foot in a real hospital, I'd go to the Dr. every year or so, get a basic checkup, turn and cough (dudes you know what I'm talking about). This flat out sucked. The uncertainty of what was wrong with me wore Michelle and I out. We spent way too much time hitting the refresh button on our Loyola healthcare app waiting on test results, praying something would come back conclusive that said it wasn't ALS. It didn't. The final test I did at Loyola was the muscle and nerve biopsy. I had to be put under anesthesia, which I had never done before, and then have a small piece of muscle and nerve removed from my leg to see if what was going on with me was degenerative or causation by something internal. I woke up, had a wicked scar on my leg that looked like a shark bit my calf, and the waiting on results began again.
       Smash cut to this morning. I'm not sitting in uncertainty, wondering, praying, begging, that I don't have ALS. I have an answer. It's not the answer I wanted but that's how life goes. We can make plans for our lives, we can pretend that we have control over what happens to us, but we don't. God is in control. God has answered my prayers. The haters out there will ask how I can keep faith when a God dealt me such a shitty hand. I've had those screaming sessions where I yell at God, used explicits that would fit right into a Tarantino movie. But God has also blessed me in so many ways that even with this diagnosis I have such an incredible life. I've found Grace in playing with my nephews. I've found Grace supporting my students with disabilities that have boulders stacked against them. I've found Grace in the bonds that I've made with my fellow teachers. I've found Grace in my wheelchair that allows me to make my own coffee, let the dog out, cruise the school hallways, go to the grocery store with Michelle. Just be me again. 

                                                                                                                      Love you guys,

1 comment:

  1. Reading this post made me go through all the emotions - I was crying, laughing, angry, relieved, impressed, surprised - everything! I know that I've been hearing updates of your experience since the very beginning, but it really is great to know how you're feeling and moving forward with everything. I truly cannot imagine what you (and Michelle and the rest of your family) are going through, and as others have said, I admire your attitude, faith and honesty. Sometimes it's hard for me to know what to say about it all. I have never personally known anyone with ALS, let alone a close friend, and it never crossed my mind as something I would ever have to think much about. Although I can't know what you're going through and I know that there's nothing I can say to make you feel better, I just want you to know that Nick and I are always here for you guys. I will support you and others who are going through it. Love ya Kris.