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


     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.    

Sunday, February 12, 2017

Hermit No More

     The last few weeks I've felt like a hermit. Besides a trip to Target or the grocery store my life had basically fell into a very predictable routine. Not only was I physically doing the same things over and over, I was letting my anxieties take hold of my emotions and I stopped trusting in those that I should while doubts guided my thinking. I was in a state that I didn't belong, where I was very uncomfortable. I severely slacked off in my relationship with God. I was falling back into a pissed off relationship with Him, one where I fell away from His word. I was expecting an OnDemand God, where He would see me struggling and snap His fingers to get me out of my rut. I thought we had these guidelines in place now. The guidelines being I will continue to praise your name in the face of ALS, with God providing me with lavish  rewards along my journey to keep my faith strong. Seems reasonable right? Maybe if I were selling smoothies, shoes, or something material and I was making a deal with my boss, then yes. However, we're talking about the creator of the universe, God who sent his son to die for all of our sins. Perhaps, even with having ALS, I over stepped my bounds in expecting a God who would make deals with me.
     Our Heavenly Father doesn't work like Instagram or Snap Chat. You won't get that immediate satisfaction and response most of the time. This isn't because He's busy helping others or ignoring you, He's always there next to you to provide comfort and support.  What He's offering you at that very instant may not be what you're looking for at that second, or that day, week, or even month but what we have to remember is that we aren't the ones calling the shots. I didn't have anything to do with creating my own existence, I didn't create the fabric of our glorious Earth. I didn't pave the path that lead me crashing into the love of my life, or the path that lead me to my career, or the paths to my best friend's hearts. I also didn't have any control over the darker paths I've walked. Loved ones dying, my ALS diagnosis, anxiety fits, failures and heartbreak. You may not recognize all the incredible work God has done in your life, the love He's poured over you, the paths He's mapped out for your life, an extensive amount of work goes into YOU. God loves you. Once you recognize all you have is because of Him, you'll realize He's all you need going forward.  

 Much love goes out to Michelle for helping me pivot my focus and get back on the writing horse. Cheers readers!


Saturday, January 14, 2017

Caregiving: By Michelle

On Friday educators from my school had a professional development day. The afternoon session was an opportunity for the teachers to choose something that interested them most.  I found myself in a session about Compassion Fatigue—how caregivers and teachers (or otherwise) give everything they have mentally, physically, spiritually and sometimes financially to a person or job and in return have compassion fatigue. We talked about how someone who takes care of a terminally ill person or student with severe trauma all day or for several years may take this trauma with them throughout other parts of their life or feel bitter towards people who have never seen or experienced such.  People who are caregivers may feel guilt or doubt because they carry the burden of never doing enough.  Throughout the session I continued to think how this not only fits in my professional life but also my personal life.
            I sometimes feel like I am more of an ALS caregiver and advocate than anything else. I leave the house and wonder if Kris will do ok without me. I send multiple texts throughout the day checking in (before he is even awake). When everyone is talking about happy hour and dinner at the trendy new restaurants after work all I can think about doing is getting home to be sure that Kris isn’t left alone for too long. I am his wife, caregiver and nurse from the minute I walk into the door. Even while I sleep. I often have to wake up to move a leg or arm.  When someone asks us to go somewhere outside of the house a million questions begin. How far away will we need to drive?  Is there handicap parking? Are there stairs? How loud is it going to be? Will there be food Kris can swallow? What happens if our van breaks down?  Are the bathrooms big enough for a wheelchair? How cold will it be that day?  Who will be there? Will he get anxiety?  I have to be thinking what is best for Kris at all times and sometimes that means passing on what seems most fun to the people around us who don’t deal with ALS 24/7.

            The Grace I have found in having a husband with ALS is that he doesn’t mind if I take an hour to myself. Kris suggests I get out to get a manicure or have lunch with a friend.  I love that Kris and I always have dinner facing each other. Everyday when I get home from work Kris greets me with a kiss. A night in to watch Netflix and chill is always ok with him. We communicate better than couples that have been married 30 years. I’ve learned to be more patient. We treat each day as if it could be our last.  Overall, I’ve learned that everyone has issues they’re going though.  And most importantly, I’ve learned that I can’t do this all on my own I must trust in God and his plan for my life, regardless what that looks like.