"I had a dream my life would be so different from this hell I'm living."
Friends, family, and former colleagues; I’ll be 44 years old this June 22nd. I was raised to be kind to others, to put others' needs before your own, and to be humble. I’ve tried to live this way with mixed success for most of my life. In 2020 it seems that to gain attention however one needs to be able to self-promote, toot your own horn, and “be your own brand”. This isn’t something I’m good at, so bear with me here.
Last July my wife and I made the difficult decision to sell our farm, give away a lot of our possessions, leave jobs with beloved colleagues, and move 7 hours north to Indiana with the sole purpose of putting others before ourselves. We pulled our children away from their friends, their family, and their normal routines.
We did all this to be able to help a family who had been living, suffering really, with ALS. Amyotrophic Lateral Sclerosis, also known as Lou Gehrig’s Disease, is a disease with no known cause or cure. It’s 100% terminal, and 100% devastating. It doesn’t take much research to find out how horrible it is. It starts by taking all your physical abilities away; you can’t walk, you can’t talk, you can’t roll over in bed. You can’t hug your children. You can’t protect them, you can’t protect yourself. You are completely trapped inside of a body that has become completely useless, while your mental capacity remains intact. You can feel everything; you are aware of your imprisonment and eternal confinement, and yet there is NOTHING you can do to slow the progression towards the terminal end.
Jeff Homan was diagnosed with ALS in March of 2017. Jeff married my cousin Tara almost 18 years ago and they are raising two beautiful boys together. They are an active family, enjoying outdoor sports like rock climbing, cycling, and running. Jeff is a fantastic father, a devoted husband, and a loyal friend. He’s a man of God and just one of the best people you could hope to know, and yet his entire world came crashing down three years ago. He’s now completely paralyzed, a quadraplegic who used to run marathons, cycle centuries, and climb with his boys. Jeff didn’t deserve ALS; it’s not like something you get when you drink too much, or smoke too much, or take too many drugs. It just comes, and then quickly takes everything away.
For 3 years Tara was Jeff’s sole care-taker. She destroyed her body as he slowly lost use of his, moving him out of bed, to the couch, to the bathroom. Watching Jeff and Tara suffer through this was more than we could bear, and so we decided to act. We sold the farm, we made the move. Jessica had the higher-paying job, so she would work and I would do care-giving. I will spare you all the minute details, but you have to do everything for someone with ALS. Think for just a few minutes what that means; every itch you want to scratch, taking care of your hygiene, eating, sleeping, taking a shower, using the bathroom. You are 100% dependent on someone else to help you do all those things.
Every move Jeff wants to make, he needs help. From stretching his arms out, lifting his legs and feet up to get the circulation going, to simply scratching his arm or wiping a runny nose, Jeff needs it all done for him and we do this what feels like a hundred times each day.
Small trips become huge events. Small events become huge issues. And huge issues (like Covid-19) become paralyzing, fear-inducing issues. With such a compromised immune system, Jeff is terrified of Covid; minor colds turn into pneumonia, and that would quickly turn into a very bad situation for Jeff. We’ve had to reduce contact even more with the outside world, taking extra precautions in what was already a bad situation.
Jeff and Tara still take trips; they are trying to continue to live their lives while there is time. Whether it’s a road trip out west, whitewater rafting in Virginia (you heard me, the man went rafting) or just a quick weekend trip they are packing as much as they can into whatever time Jeff has left. Those trips are exceedingly difficult. Jeff takes up the entire rear compartment of their accessible van, and then you add two boys and his wife, all their gear, Jeff’s mobile lift system (very large and heavy), a large collapsible chair and inflation mat so he can sleep, his breathing machine, cough assist, and the list goes on and on.
If you’re still reading, and I hope you are, thank you. Thank you for taking just a few minutes to understand what an average day for someone with ALS, or a lot of other similar diseases, is like. So here’s what I’m asking of you and this is listed in order of importance:
1) Please, write or call your congressman and senators. Tell them that the following legislation is very important to you and the thousands of people that are suffering and dying every single day from this disease. You can find more info on this legislation with a contact form at Team Stevens Nation (https://stevensnation.com/help-us/)
2) Help us educate others. ALS is not an ultra rare disease. It’s just that the life expectancy is so short that a lot of people aren’t even really aware of what this disease is or what it does. You can Google (or DuckDuckGo) ALS and learn all about it, but please share this post with your friends and family. There is strength in community, and we need you!
3) Donate. Give to foundations such as I Am ALS (www.iamals.org) or similar organizations who are leading the charge for finding a cure. There are some promising treatments out right now, but are unavailable to ALS patients. More funding is needed to bring these costs down and find life-saving and life-changing cures.
I have no affiliation with I Am ALS or Team Stevens Nation. I am affiliated with a small foundation called the Shred ALS Foundation that uses donations to directly impact the lives of those suffering with ALS, and they’ve made a difference already for several families battling this terrible disease.
So here’s the hard part for me, but I need to justify what I’m asking of you; My wife and I have given over $65,000 in just over a year. We did this by giving up a job, an entire income, so we could help. For now, this is my full time, unpaid, but very appreciated job. I’m not looking for praise, or a pat on the back, or anything other than wanting to open some eyes and hearts to the struggle that a lot of families are facing. It could be me, or you, or someone we love. They need our help, desperately.
Unfortunately any treatment or cure that might be available will be too late for Jeff Homan. He’s too far progressed into the disease for anything to turn it around at this point. But his story doesn’t have to be the story for those that come behind him. Once I’m no longer needed here we’ll return to “normal” life in Chattanooga. Knowing there’s nothing I can do to save Jeff is something that will eat me up for the rest of my life, but there is something I can do, that we all can do, to ensure that’s not the outcome for other good men and women like Jeff Homan.
Thank you for your time, your prayers, and your willingness to listen.