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.
Tuesday, September 27, 2016
Let Go, Let God
Wednesday, September 7, 2016
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.
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.
Thursday, August 11, 2016
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.
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.
Friday, July 29, 2016
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.
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.
Friday, July 15, 2016
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.
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.
Friday, July 1, 2016
Want vs Need
The good old dictionary defines want as something that is desired, not substantial or necessary. While it defines need as something that is necessary and substantial, the serious twin that was born moments before Want and never let's him forget it. As an elementary teacher I've spent lots of time discussing Wants vs Needs with kids. We would always do a graphic organizer to compare the two and hopefully walk away from the experience understanding how great we have it and thinking about how to focus more on need.
I just spent the last week in NYC steps away from Times Square and some of the most lavish experiences one could imagine. Everywhere you look in downtown Manhattan there is a want. Designer sunglasses that are way cooler than yours. Artisan red velvet cupcake bites, champagne with your eggs, Cadillac Escalade upgrade from your typical yellow cab, imported espresso shots, Maine Lobster at dinner atop the Empire State Building. You quickly get caught up in the wants and start smearing wants all over your needs. We cashed in on the once-in-a-lifetime experience and indulged on the want's as one should do.
When we returned to our quieter, slower paced lives here in Loves Park my mind shifted back to the needs mentality, at least for a few short days. I often daydream about wants, like we all do, it's human nature. I want to be able to grip the steering wheel, punch the gas, and drive for hours, when what I need is to escape. I want to cut up vegetables, I want to throw a baseball, I want to run a 5k, I want to dust in the living room, scratch my nose, pick up a taco, when what I need is to eat. Shotgun a beer, stroke Michelle's hair, I want my ALS progression to cease and just fuck off. The reality is dwelling on these wants, wants that many think are needs, doesn't get me anywhere. ALS has made me say goodbye to many things I want to do and there's nothing I can do about it.
ALS can't control my mind and how I perceive life around me. I can pay less attention to my wants and hone in on my needs. My need to embrace the time I have with my nieces and nephews. My need to stop taking the Lord's name in vain. My need to acknowledge those close to me who have sacrificed much on my behalf. My need to forgive, write, advocate, laugh, explore, listen, love and embrace the tremendous Grace that surrounds me.
I just spent the last week in NYC steps away from Times Square and some of the most lavish experiences one could imagine. Everywhere you look in downtown Manhattan there is a want. Designer sunglasses that are way cooler than yours. Artisan red velvet cupcake bites, champagne with your eggs, Cadillac Escalade upgrade from your typical yellow cab, imported espresso shots, Maine Lobster at dinner atop the Empire State Building. You quickly get caught up in the wants and start smearing wants all over your needs. We cashed in on the once-in-a-lifetime experience and indulged on the want's as one should do.
When we returned to our quieter, slower paced lives here in Loves Park my mind shifted back to the needs mentality, at least for a few short days. I often daydream about wants, like we all do, it's human nature. I want to be able to grip the steering wheel, punch the gas, and drive for hours, when what I need is to escape. I want to cut up vegetables, I want to throw a baseball, I want to run a 5k, I want to dust in the living room, scratch my nose, pick up a taco, when what I need is to eat. Shotgun a beer, stroke Michelle's hair, I want my ALS progression to cease and just fuck off. The reality is dwelling on these wants, wants that many think are needs, doesn't get me anywhere. ALS has made me say goodbye to many things I want to do and there's nothing I can do about it.
ALS can't control my mind and how I perceive life around me. I can pay less attention to my wants and hone in on my needs. My need to embrace the time I have with my nieces and nephews. My need to stop taking the Lord's name in vain. My need to acknowledge those close to me who have sacrificed much on my behalf. My need to forgive, write, advocate, laugh, explore, listen, love and embrace the tremendous Grace that surrounds me.
Monday, June 20, 2016
Father's Day
Happy Father's Day dads. In my 29 years I have met and been molded by many terrific fathers. Grace guy dads, coaches, teachers, the good years I was able to spend with my own dad and good, old, Poppa Jamerson. My father in law Donnie, who I now call Pops has been a remarkable role model in my life during some formidable years. Firstly, he trusted me with his daughters hand when I asked his permission to marry Michelle. He has picked me up and brushed me off when I've made a complete drunken ass of myself. He has rallied in my corner and fought ALS tooth and nail with me. He loves harder and more passionately than any other man I know, and for that I'm proud to be your son in law.
Lon Grahnke was my dad, and this September will be 10 years since he passed. I remember my dad differently then my sister Eliza and my brother Kurt. Due to Eliza's disability, she only remembers the happy go lucky dad. Kurt, due to his age really only experienced the tough times with Dad. As the oldest child, I have a more rounded recollection of Dad. I knew him as a sociable protector, the big guy who would engage with anyone and wasn't scared of anyone. The guy who worked his ass off to help me be the scrappiest baseball player out there. Analyzing 9 year old pitchers so I would know when to take pitches and when to go yard. I also experienced the years he struggled with alcohol and would come home hammered or we'd pick him up at the police station. I also vividly remember when my mom explained to me as a young teen that my dad had early onset Alzheimers. I watched the total bad ass I knew as Dad wither away. I argued with him about why he shouldn't eat vegetables out of the can, I had to tell him that grandma was related to him, and shove him when he questioned who Kurt was and would get aggressive with a 10 year old.
I share a lot of attributes with my old man. We both have very round heads, we will never give up on the White Sox, we're both stubborn to a fault, and unfortunately, we both have had to fight ferocious neurological diseases. Dementia took Dad out. He fought it like hell, he found God along the way, he did his best to embrace the things he held near and dear to his heart before his mind quit on him. I fight ALS day in and day out the same way. Having a parent with Altzheimers has given me an odd perspective. As terrible as ALS is I can still take solace in knowing that my mind won't ever give up on me. As I read back through this post I realize it isn't exactly one of my happier posts. But then again, everything in life isn't happy. However, you can always find Grace in life. Sometimes it slaps you in the face, other times you have to reflect before it comes to you.
The Grace I clearly find in my experience with Dad's is that sometimes you have to experience the extremely tough times to appreciate how great life is now. The tough times show you how important it is to thank God for the ordinary. The ordinary is extraordinary as far as I'm concerned. Do I wish things could have been different with my dad? To an extent, but without the hardships my family endured we wouldn't be the awesome people we are today, and I sure do love being awesome.
Lon Grahnke was my dad, and this September will be 10 years since he passed. I remember my dad differently then my sister Eliza and my brother Kurt. Due to Eliza's disability, she only remembers the happy go lucky dad. Kurt, due to his age really only experienced the tough times with Dad. As the oldest child, I have a more rounded recollection of Dad. I knew him as a sociable protector, the big guy who would engage with anyone and wasn't scared of anyone. The guy who worked his ass off to help me be the scrappiest baseball player out there. Analyzing 9 year old pitchers so I would know when to take pitches and when to go yard. I also experienced the years he struggled with alcohol and would come home hammered or we'd pick him up at the police station. I also vividly remember when my mom explained to me as a young teen that my dad had early onset Alzheimers. I watched the total bad ass I knew as Dad wither away. I argued with him about why he shouldn't eat vegetables out of the can, I had to tell him that grandma was related to him, and shove him when he questioned who Kurt was and would get aggressive with a 10 year old.
I share a lot of attributes with my old man. We both have very round heads, we will never give up on the White Sox, we're both stubborn to a fault, and unfortunately, we both have had to fight ferocious neurological diseases. Dementia took Dad out. He fought it like hell, he found God along the way, he did his best to embrace the things he held near and dear to his heart before his mind quit on him. I fight ALS day in and day out the same way. Having a parent with Altzheimers has given me an odd perspective. As terrible as ALS is I can still take solace in knowing that my mind won't ever give up on me. As I read back through this post I realize it isn't exactly one of my happier posts. But then again, everything in life isn't happy. However, you can always find Grace in life. Sometimes it slaps you in the face, other times you have to reflect before it comes to you.
The Grace I clearly find in my experience with Dad's is that sometimes you have to experience the extremely tough times to appreciate how great life is now. The tough times show you how important it is to thank God for the ordinary. The ordinary is extraordinary as far as I'm concerned. Do I wish things could have been different with my dad? To an extent, but without the hardships my family endured we wouldn't be the awesome people we are today, and I sure do love being awesome.
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