Friday, June 16, 2017

What Did You Say?

      I've always been the guy to strike up a conversation. I would talk to anyone. The toddler in the sandbox, the elderly man on a park bench, the smoking hot soccer mom, even the meth-head on the L train and convince him he really didn't want to rob us. I talked myself and friends out of numerous tickets for a variety of run ins with the police. Even once when we had cases of beer in the trunk and were under age. I turned nosebleed seats into behind the dugout with just a little flirtation. I even got past Matt Damon's security team with a small lie and ended up with a picture with Jason Bourne. The epic stories could go on for hours. God definitely gave me the gift of gab.
      When I was first diagnosed with ALS it originated because of the difficulty I was having with walking. Now no one wants to hear that you have ALS, but doctors like to soften the blow when they can, so since I was having difficulty in my lower extremities, they put the gracious twist on the diagnosis saying at least it isn't starting top-down. Many people who are diagnosed with bulber onset ALS pass away quicker because they lose their ability to talk, swallow and breathe first. So I had that going for me.
      Pretty quick after my diagnosis I built a strong relationship with the Chicago Chapter of ALS Association. They called on my gift of gab to travel to DC and advocate on behalf of those people with ALS, currently, have passed, and will receive diagnosis in the future. I took up the challenge two years in a row. Making congress members shut up and listen regardless of policy and partisan lines. I wear this work as a badge of honor and am blessed that I had the opportunity to make a difference when I did. This past May when the Chapter was recruiting troops to go to DC I had to decline. After two years of fighting this fucking disease it crept past my neck threshold, no matter what we threw at it, it became harder for me to speak clearly and loudly. 
     My emphatic and ear-splitting roar is becoming fainter and fainter by the day as my tongue muscles atrophy. Now you better believe it, fighting a battle with my own mouth is not one I enjoy, it pisses me the fuck off to say things and not be understood, especially after being such a wordsmith. However, I'm a grown ass man, I've abandoned bitterness and resentment and now focus on reflection.
     C. S. Lewis once summarized God's Grace and love for us in these words that fill me with comfort of what's to come and the pain I'm experiencing now. "God whispers to us in our pleasures, speaks to us in our conscious, but shouts in our pain: it is his megaphone to rouse the deaf world." There is purpose to your pain. Don't curse his name for it, use it to bring change to this deafening world.
  

Tuesday, June 6, 2017

Summer Chapter

     It's freaking summer! At least it is for most teachers and students alike, Michelle still has four days and it seems like a cruel joke. Most of us have traditions for the summer, especially those of us in the Midwest. We've got twelve weeks to pack as much entertainment, excitement and relaxation into as possible. We've got dozens of wedding activities on our calendar. We dodged them last year but they caught up with us. Weddings are a Pintrest tornado that impact everything in their path, they're never simple no matter how hard you try, yet they inevitably end up being fun. I used to have a blast at weddings. I'd dress up all dapper, figure out who would be my drinking partner, usually get hammered but get away with it with my charm and dance moves. Wheelchair bound, no booze and needing assistance with every physical movement impacts wedding season for me.
     Others are packing their summers with outdoor activities that Bass Pro Shop marketed all winter. My Pops is jacked to get off the grid, put on his '90's, ugly Bears hat and fish from dawn until dusk. Other friends are waking their hibernated boats to dock at the lake for skiing, tubing and Tomfoolery. My Mom, Eliza, and Kurt will escape to Washington Island for extended periods of time where time seems to stop. Kamm and the boys may venture to Baraboo, where we conquered the bluffs around Devil's Lake and drank more Michelob Ultra Golden Light than a platoon returning home from war. Before ALS, my Summer Chapter's were always focused on getting off the grid, being near water, turning off technology, reading books I put off and interchangeably swapping coffee highs and beer buzzes. Now I can't escape the grid. My life and happiness depends on technology. I can't stand inches from the cliff, I can't flip the canoe for a laugh, I can't drive the car onto the ferry boat, I can't eat the steak at the wedding, or take a shot, or pinch Michelle's butt on the dance floor.
     I'm sure by now I've got most of my readers shedding tears, but know I'm not crying. Sure, my Summer Chapter looks a shit load different this year than it has in years past, but this just gives me the opportunity to throw summer tradition in the fire. With ALS, your chapters become sub-chapters, or more like a bullet point list. Every day I wake, I get to cross off point A, and every night I go to bed with Michelle, I get to cross off point Z. The other 24 points have a way of finding themselves into my plans whether I schedule them, or they appear by God's Grace. As long as I continue to check off point A and point Z I'll make the most of this summer. If one day I don't, you know where I'll be, I'll be off the grid in Heaven doing all the things I love and miss about what we all love about summer.

 Bluffs around Devil's Lake, Wisconsin
   

Tuesday, May 2, 2017

Time

      Time is one hell of a concept. Time drives our society. We rely on gadgets like clocks, watches and phones to keep track of time and we trust that these tools will do their jobs because time is precious, so precious that some people pay big money for gadgets to tell time down to the exact millisecond. Time is precious, we're told from a very young age, even before we truly understand,  that it's bad to waste time. Folks can argue forever about what activities are a waste of time. Michelle and I used to argue over whether video games were a waste of time. I thought not because they relaxed me, but I also thought watching a TV series over and over was a waste of time, but she saw it as therapeutic.
      There are millions of things that you can spend your time doing during your lifetime. Some things are necessary to increase your quality of life. It is absolutely necessary that you spend some of your time eating, sleeping, cleaning yourself. How much time you spend on those necessities is your choice. Your job plays a huge role in the amount of time you get to allocate for everything else. Exercising, social media, taking kids to practice, errands, visiting family members, book clubs, car repairs, Starbucks, play dates, taking pets to the vet, home repairs, dinner dates, online shopping, fantasy football, vacations, church. We know time is precious and that's why we pack so much into the free time that we have. Before I was diagnosed with ALS I stayed busy. I liked to socialize especially to keep busy, I was always flying by the seat of my pants, then ALS struck and that flying turned into a crawl.
     That precious time I didn't want to waste wasn't moving as fast anymore but at the same time it was fleeting because no one survives ALS, my time-stock took a major loss on the Dow Jones. So after the initial shock of diagnosis wore off I turned to the Master of Time himself; God, for answers. I brushed up on scripture, listened to podcasts, talked to friends in Christ about what this loss of time meant. Now, I could throw myself a pity party about how my time on Earth had been cut short and now is the time to fully focus on myself, like a coward, scared what's around the corner, or I could stand strong in God's promise that Heaven has everything my soul desires and needs. Essentially flipping the scrip. I no longer cling to every moment as one I wasted or will never get back, I now see those moments as intentional morsels of Grace given by God.
     Feeling so blessed, with time slowing down for myself I have been able to reflect on why time is so precious. It's not there for you to pack until you burst, it's there for you to help others, it's there for you to give glory to God, it's there to reflect on the blessings you have. You may think what I'm saying is irresponsible because society screams at you to live your life to the fullest! I would argue that my way is doing just that. Heaven is our playground where time ceases to exist and we can do whatever it is we loved on Earth and what we can only imagine. No more need for planners or gadgets. You'll just be. And if you can't picture this in your future, maybe it's time to set aside that precious time and strengthen your relationship with God. He always has time for you.

Sunset near Egg Harbor, Wisconsin.


Thursday, April 13, 2017

Letting Go

       Public Service Announcement: This blog will make you cry, laugh, gag, reflect, and hopefully leave you feeling closer to our Lord Almighty. I've had some rough weeks here and there. I've been trying to figure out medication, how long I should be on my bi-pap, all the while trying to get excited about a liquid diet. This has been tiring as hell. I spent all day Saturday in bed and just wrapped up another all-day shift yesterday. In the midst of this cluster fuck I became extremely constipated and couldn't pee either. Hospice nurses to the rescue! Oh, wait, you have to do what?!? Hell naw I thought in my head but I had to let go and let the pros do their jobs. I needed a suppository and a temporary catheter. Those are two items that go the wrong way on one way streets. A suppository feels like a thumb tac on your booty rim and a catheter felt like a silly straw forging it's way down my golden street. It fucking sucked, I hated it, but it would have been a disaster had I not let go.
     As many of my readers know, I am the oldest sibling in my family, the big brother. I'm six years older than Kurt and four years older than Eliza. Not only am I the Big Brother to Eliza and Kurt I have many younger friends who look to me as their Big Brother. A friend of mine once said that wherever I go I cast nets on those that need help, reel them in and see if there's anything I can do for them. It could be a soccer mom, an elderly dude, a young adult with disabilities, the scary gang banger on the L, or the beautiful damsel in distress. I could talk to anyone and connect with them. Many of these nets I quickly let slip away, but dozens of these nets I kept an eye on over the years and regardless of their age I consider them my younger siblings, or at least someone I have to protect. This large extended family I've built makes it very difficult to be okay with letting go of this world. Not to sound conceeded, but I think about what my little sister will do without me. What will my fantasy football league do? What will my teachers do without my advice?
The answer is they will be fine. 
      People die. We're all going to come to the same fate. Whenever I die, I'm going to be showered with love. I know so many awesome people that I can only imagine what the Celebration of Life will look like. Many folks aren't so lucky. Either they haven't found Christ and accepted Him as his Savior or they don't have have a support system around them and are incredibly lonely. I'm generalizing, but it brings me back to the importance of solidifying that relationship with the Lord. It's easy to stray from His path when things go wrong. Job in the Bible lost everything. His land burned to the ground, his wife and children died, and still he kept his faith. Paul traveled the globe proclaiming God's Grace while he watched his friends be murdered and while he got his ass kicked. 
      "Many are the plans in the mind of man, but it is the purpose of the Lord that will stand."(Proverbs 19:21) I've got plans galore. I've always been the dude to create social plans for our group. Where we're going, making the reservation, making sure everyone has a ride, making sure that asshole won't be there. However, I've retired from the planning game, I've let go. The Lord has a purpose for me, that purpose might be here on Earth in the next few months, or it might be in Heaven. Either way this Big Brother has let go.   

Thursday, April 6, 2017

Zzzzzzz

     I have found myself sleeping a great deal more lately and I haven't been able to put my finger on just why that is. Rather than do research and freak myself out I reached out to my homies around the country who have ALS and asked them what their sleep schedule looks like. One dude is apparently Superman because he goes to bed late and gets up early. If I did this my poor caregiver would be mobbed by obscenities. Another buddy was completely different. He said he goes to bed when he feels like it and might not even get out of bed the next day until dinner. Mind you, these dudes are similar to me, relying solely on their caregivers for essentially everything.
     The last week or so I'm ready for bed at 7pm. It's definitely disheartening because the sun is still out and I know beautiful evening weather is just around the corner. Once in bed I rarely pass right out. My body stretches out fully, pressure points change, and I put on my space mask (aka my bi-pap). Once my space mask is on I usually get my cuddle on with the wifey, either watching How I Met Your Mother, Teen Mom, or MTV's: The Challenge, all awesome shows so don't bother hating. Once Michelle calls it quits we set up something for me to watch that will stream without needing to touch any buttons on my phone and will eventually time out around midnight when I fall asleep. Now in the morning, I'm typically awake by 9:30, so I clock about nine hours of sleep but sixteen hours of wearing my space mask that gives my lungs a break and chance to recuperate. Then, depending on the day, Emily or Michelle give me morning meds in bed, followed by leg and arm stretching leaving me in bed streaming something again for at least another 90 minutes.
      As I read that back that's a hell of a long time in bed. I wish my body didn't need that kind of recovery time. However, the moment I pity myself I think about the thousands of people with ALS who are confined to their beds all day, or who don't have a wheelchair equipped like a James Bond car to get around in. That's when I talk to God and ask him,  "how I can make an impact today?" As I've stated before in this blog, by the Grace of God I will use my wakeful hours to advocate for others with ALS and the less fortunate, I will raise money for a cure, even if I don't get to reap it's benefits, and most importantly I will spread love and joy through God's word, loudly and tenderly right before I close my eyes.


Tuesday, March 14, 2017

Backed Up

   

     Recently I've been transitioning to a softer diet to eliminate chances of choking on my food. This doesn't mean I'm sitting back being fed baby food puree, although it may feel like it at times. I'm still eating noodles, certain snack foods, ground meats, soup, applesauce, etc. We had a dollar store blender for making my favorite go-to meal, protein smoothies. However, that blender couldn't hack it, it exploded and now we have a kick ass Ninja.
     Just like every other concession I've had to make because of fucking ALS, I fought it. You can only choke on sharp foods and breads so many times before you develop anxiety and fear of that experience. Michelle stood right by my side, easing this transition into place. She didn't freak out, she kept eating times as normal as possible and even when we eat totally different meals we have them together, or she'll have soup just so I can eat it too. She's my Superhero in all of this.
     With this diet transition comes bodily changes. I think what I'm eating is healthier than what I had previously stuffed down my gullet. However, with straws becoming harder to use, making my water consumption go down, I load up on fiber. My bowel movements have become more spaced out and I'm full of gas at all times. Too much information? I don't really care. It isn't an easy task for someone to go poop that has ALS. Someone has to disconnect my eye-gaze, drive me into the bathroom, pull down my pants and lift me onto the toilet, so that I'm comfortable I might add. Not every time I sit on the throne is successful, I don't always have results. Today wasn't a day I could waste hours on the potty. I had an email frenzy at hand to get the message out about our next fundraiser. This is where Macgyver Kris came out swinging. Bowel movements be damned, I was going to multi-task.


     This may seem like the silliest example of finding Grace in a day that I've blogged about in a long time, but it really meant a lot to me to not cave to ALS circumstances today. Even though my body got in the way, I was able to get a win today. Whenever I win, I'm showered in Grace. 

Saturday, February 25, 2017

Benjamin Button

     As I gaze at baby pictures on Facebook or funny baby moments on Snapchat, I realized that those cute babies and I have a lot in common. We both need help using the potty, we both need help getting dressed. Babies need to avoid sharp, crunchy foods and so do I. Nurses are constantly keeping track of our weight and bowel movements. Babies ride in car seats with many seat belts, I also get strapped up to go anywhere in my wheelchair. Babies are constantly monitored to make sure they don't hurt themselves. I now can't go more than an hour by myself, which even that hour scares the shit out of Michelle. Babies wake their parents every night for milk or a poopy diaper. I wake Michelle every night for body movements or bodily itches.
      The major difference in this comparison is that day by day babies rely less and less on others, striving for more and more independence. I rely more and more on others and lose abilities slowly each day, while desperately grasping for scraps of independence. There aren't thousands of ALS pinning pages on Pinterest for Michelle or I to find life hacks for managing ALS. There aren't thousands of books, workshops and podcasts that provide numerous possibilities to navigate this devastating and deteriorating disease, the few resources out there are still missing their final chapter; What to Do Now There's a Cure. No matter what angle we look at ALS we're going to find the same conclusion. You can't get rid of it, it will get worse, we need to find a cure.
     That's a dismal way of starting every day. Babies wake to loving parents, breakfast and if they're lucky Yo Gabba Gabba. However, I'll be damned if I'm going to wake up to a depression, taking stock of the shit I can no longer do. I'm going to take anxiety meds when I want, pain meds when I want and eat pot whenever I got it. I'm going to communicate with friends and family as much as possible while I can with my eye-gaze. Most importantly I'm going to focus on the Grace moments that still litter my life and encourage others to find the Grace in their lives.