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.
Friday, July 29, 2016
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.
Tuesday, June 14, 2016
Exhale
When you can't move your arms, walk, feed yourself, turn the pages of a book, toss a ball or any other physical activity involving your limbs you are literally stuck. ALS will eventually take these abilities away from everyone who is diagnosed. I feel stuck at times. I scream obscenities, lash out at loved ones, and stray from my faith. But then there are days like today. Today I accepted the stuckness and turned my thoughts to the things I can still embrace and enjoy.
It's been said that people with ALS have heightened hearing, vivid and precise eye sight, bigger hearts to love and greater compassion. This might all be bullshit and scientifically inaccurate, however today I certainly can feel and embrace these sparked sensory experiences.
My beer tastes sweeter, the tunes are crisper on Spotify, the breeze in the trees seems to have purpose, food tastes fresher, I can hear God's whispers. The abilities I've lost have forced me to focus on the small stuff. The stuff we often forget to make time for and certainly take for granted. Today I'm taking stock in the Grace that surrounds me. I invite you to hit pause and do the same.
It's been said that people with ALS have heightened hearing, vivid and precise eye sight, bigger hearts to love and greater compassion. This might all be bullshit and scientifically inaccurate, however today I certainly can feel and embrace these sparked sensory experiences.
My beer tastes sweeter, the tunes are crisper on Spotify, the breeze in the trees seems to have purpose, food tastes fresher, I can hear God's whispers. The abilities I've lost have forced me to focus on the small stuff. The stuff we often forget to make time for and certainly take for granted. Today I'm taking stock in the Grace that surrounds me. I invite you to hit pause and do the same.
Sunday, June 5, 2016
I am
I spent the entire month of May advocating for individuals with ALS. I went to DC to raise awareness of the disease and plead with politicians to support initiatives that can potentially save the lives of thousands of people. I raised awareness through social media with articles, facts, personal stories, multiple Facebook shares, some funny and some sad. I appeared on the news to talk about walking away from teaching due to ALS and hopefully snagged some community support. I packed up my classroom for the last time and "retired" all because of ALS.
I know I made an impact during the month of May. I had a lot of fun, met wonderful people, and strengthened relationships. But I also feel like I lost myself a bit in the fight, the excitement, the cause. I feel like I became ALS. I am not ALS. I am a force to be reckoned with. I am a friend. I am a White Sox fan. I am a beer drinker. I am sarcastic. I am a husband. I am an uncle. I am diverse, joking, confident, good, emotional, arrogant, judgmental, a sinner. I am also saved.
I received many prayers for relief from this disease in recent weeks. Many condolences, many tears, I received many forsaken looks and pats on the back. Do I wish I had my abilities back? Of course I do. Do I hate the suffering ALS brings on families? Damn straight. Do I want a cure for ALS? More than anything. However, this disease did reel me in from the abyss. I was living an enjoyable life, one full of friends, family, a career, I had the stability we all seek, but I was missing substance. This disease made me find myself and redefine the man that I am supposed to be and why I am still here. Though the hardships are obvious and tremendous, they are temporary. Thanks to my rekindled relationship with God I am living for the eternal life. I am here to be an example of love and Grace. I am His.
I know I made an impact during the month of May. I had a lot of fun, met wonderful people, and strengthened relationships. But I also feel like I lost myself a bit in the fight, the excitement, the cause. I feel like I became ALS. I am not ALS. I am a force to be reckoned with. I am a friend. I am a White Sox fan. I am a beer drinker. I am sarcastic. I am a husband. I am an uncle. I am diverse, joking, confident, good, emotional, arrogant, judgmental, a sinner. I am also saved.
I received many prayers for relief from this disease in recent weeks. Many condolences, many tears, I received many forsaken looks and pats on the back. Do I wish I had my abilities back? Of course I do. Do I hate the suffering ALS brings on families? Damn straight. Do I want a cure for ALS? More than anything. However, this disease did reel me in from the abyss. I was living an enjoyable life, one full of friends, family, a career, I had the stability we all seek, but I was missing substance. This disease made me find myself and redefine the man that I am supposed to be and why I am still here. Though the hardships are obvious and tremendous, they are temporary. Thanks to my rekindled relationship with God I am living for the eternal life. I am here to be an example of love and Grace. I am His.
Sunday, April 24, 2016
Community
I turned to the dictionary for a definition for community to tie my whimsical ideas of a community together into something concrete, but only found dull and simplistic definitions. What Michelle and I experienced this weekend wasn't dull or simplistic, it was powerful, uplifting, comforting, and loving.
Dozens of friends and family converged on our backyard to give it a total makeover. We had 400ft. Of fence that needed to come down. Flower beds overflowing with weeds, dead trees that needed to come down, numerous other jobs to be done. This was a monstrous task to take on, one that Michelle and I would never be able to handle on our own. However our community rallied behind us and uplifted our yard and our home to a level we only dreamed of. Not only did people close to us shower us with grace and love but complete strangers joined the army to make a tremendous impact. Rock Valley Fencing sent a 6 man team on a Saturday morning they normally wouldn't work to build my fence with free labor. Dudes I'd never met working their ass off for what they said was a family in their community and communities lift each other up.
Watching fellow teachers, neighbors, family members, friends, even friends of friends and children rally behind us to make such an impact while also enjoying one another was such an incredible thing to experience. ALS not only physically attacks you but also wages war on your emotions. Worry and fear have a way of blindsiding me when I'm most vulnerable, like in the middle of the night when I have nothing to distract me. Last night I woke up in the middle of the night, only I wasn't filled with worry, I was filled with peace and love.
Many would say I've been dealt an awful hand and should be filled with grief and resentment towards God, but after this latest example of Grace in my life I can say with certainty that my life has a purpose, support and love is plentiful and my community is far from dull and generic, it's exceptional.
Dozens of friends and family converged on our backyard to give it a total makeover. We had 400ft. Of fence that needed to come down. Flower beds overflowing with weeds, dead trees that needed to come down, numerous other jobs to be done. This was a monstrous task to take on, one that Michelle and I would never be able to handle on our own. However our community rallied behind us and uplifted our yard and our home to a level we only dreamed of. Not only did people close to us shower us with grace and love but complete strangers joined the army to make a tremendous impact. Rock Valley Fencing sent a 6 man team on a Saturday morning they normally wouldn't work to build my fence with free labor. Dudes I'd never met working their ass off for what they said was a family in their community and communities lift each other up.
Watching fellow teachers, neighbors, family members, friends, even friends of friends and children rally behind us to make such an impact while also enjoying one another was such an incredible thing to experience. ALS not only physically attacks you but also wages war on your emotions. Worry and fear have a way of blindsiding me when I'm most vulnerable, like in the middle of the night when I have nothing to distract me. Last night I woke up in the middle of the night, only I wasn't filled with worry, I was filled with peace and love.
Many would say I've been dealt an awful hand and should be filled with grief and resentment towards God, but after this latest example of Grace in my life I can say with certainty that my life has a purpose, support and love is plentiful and my community is far from dull and generic, it's exceptional.
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