In May of 2020, Lori Larson Heller lost her beloved husband, Jim Heller, due to complications from ALS. Here, she shares their story and talks about how the experience has now inspired her to become a passionate advocate for ALS.
Have you ever hated something, only to then see that same something become your purpose? A complete 180? Enter my relationship with ALS.
So, life was absolutely perfect and beautiful … until it wasn’t. After experiencing weakness in his right hand that was getting worse, as well as spotting fasciculations occurring in various parts of his body, we started the universally-hated process that leads up to an ALS diagnosis. Jim’s first appointment with his family doctor was in early 2018, which led to neurologists, EMG’s, rheumatologists, MRI’s, orthopedic surgeons, countless blood tests, and finally, an ALS clinic. If you’re reading this, you probably are already aware of the lengthy, “rule-out” process of being told you have ALS. For us, that came to an end on Sept. 6th, 2018 in Minneapolis when we learned the terrible news. Since there is no affirmative blood test for ALS, we opted to get a second opinion at the Mayo Clinic. Yep, we had ALS.
While we were somewhat familiar with the disease, we were still shocked at the harsh reality you learn as part of your diagnosis. While our brains were foggy and it felt like our hearing became muted, phrases like “I’m sorry, there is no cure” and “go home and talk about things you’ve always wanted to do” and “get your affairs in order” were bouncing off the walls in our head. Keep in mind it may not have been those exact words, but that’s what we were hearing. Here is where the beginning of that 180 starts for me. I went into an immediate grieving period. Just hearing that I was going to lose my husband to this disease made me feel like I already had. I am not exaggerating when I say that I could not even say nor hear the words/letters ALS for a couple of months. Thank goodness Jim didn’t need much care in those first two months, because I was certainly not at my best. After much prayer and begging God to help me be strong and make each day with Jim our best, I felt a switch turn on and I was able to do just that. Thank you, God.
Jim’s ALS was fairly fast progressing, and we lost our beautiful father, husband, step-father, son, brother, Papa and friend on May 16, 2020, about 20 months from diagnosis. During that time, Jim displayed grace and courage that was admired by all who knew him. He and I had a soul-mate relationship that I thought could not have gotten any stronger, yet I fell in love with him more every day of that disease, as he did with me. Imagine the strength it took for him to go from being an active outdoorsman and skier, a professional businessman, an engaged father, husband and papa to being locked in your own body, full-time in a power wheelchair, being fed by a feeding tube, and allowing me to take care of his every need. Yet he never complained, not once. What a beautiful soul.
After Jim died, no one was more surprised than me to realize that I now had a passion to make a difference in this ALS arena. My purpose of being Jim’s caregiver went away with him on May 16, 2020, but I woke up a few weeks later with an excitement for this new purpose of curing ALS. Yes, me. The same person who couldn’t stand to even hear someone mention the disease just a year or so prior. After experiencing ALS, some will want to, and do, run away. No one can blame them! They have done their time. But I’m choosing to run toward. I spent months researching the ALS landscape (trust me, there are a lot of organizations doing something in ALS … and I say “hat’s off” to anyone willing to get or stay involved). Having said that, there is also lots of duplication that goes on that would serve us all better if we found ways to continue to work together. That’s a story for a different time.
Once my grief allowed, I got to work raising money (about $500,000 in the past year) but did not start my own foundation. Instead, I raise the funds and then give to the organizations that most align with my thoughts. No need to reinvent the wheel. As for research, drug discovery and finding a cure, the work and team at ALS TDI caught my attention with their knowledge, honesty, transparency, dedication, compassion and passion. Being a non-profit biotech, their motive is properly aligned with mine in focusing solely on curing ALS, rather than being profit-driven and feeling pressured to move on to more lucrative endeavors.
The hidden surprise in all of this was that working on the dreaded disease that took my husband has been a source of great healing for me.
Life has given me so many lessons over the past couple of years, and I am learning to be grateful even in the tough times. I’m also learning that sometimes we just have to show up. Just show up, and things begin to happen. If everyone believed that one person can change the world, the world would change. And it’s time to change ALS. Did I say change? I meant cure.
- Lori Larson Heller
