Life in a wheelchair was never on my Bingo card.
I used to run 5Ks on purpose…
Hold that image for a moment because everything that follows makes more sense when you know who I was before all of this started.
The Trip That Opened My Eyes
Three months before my terminal ALS diagnosis I came down with bronchitis just days before leaving for a business conference. I rushed to the doctor for medication, lost my voice completely and somehow powered through the entire conference anyway. Looking back on that trip there were signs of trouble I didn’t understand yet.
On the way there my flight landed late in Chicago and I’d already missed the first social event of the conference. When I got off the plane I found out my connection to Nashville had moved to a completely different terminal. Not a couple of gates down. A tram ride away. And my flight was already boarding.
I tried to run.
I was weaving between travelers, rushing to the front of the tram line, doing everything I could to make that flight. And as I ran I noticed my calves burning in a way that felt wrong. My ankles felt like they were collapsing out from underneath me with every step. My shortness of breath, which had been lingering for years and was made worse by the bronchitis, was making it hard to push through.
I remember thinking to myself how am I this out of shape? I don’t run through airports often but it was just a moment ago that I was running 5Ks daily for the heck of it.
I barely made my flight. But something stayed with me from that run across airport terminals that I couldn’t quite name.
My left leg felt stiff but weak. Both ankles felt unstable. My left knee would buckle without warning.
Within two months of that trip I was using a cane.
The Last Time I Walked Without Assistance
About two months later I was heading to another conference. By this point doctors believed I likely had ALS though the official diagnosis hadn’t come yet. I almost didn’t go. I couldn’t possibly be in the right headspace and my ability to function was declining rapidly. I didn’t know what to expect from one week to the next.
Navigating my way to the gate I had to stop multiple times. I couldn’t run without falling even if I’d tried. I didn’t yet know how easy it was to request wheelchair assistance at the airport. Navigating disability was completely foreign to me. But somewhere in that terminal I realized with quiet certainty that this was the last time I would navigate a long distance without a wheelchair.
Two weeks later I was officially diagnosed with ALS.
The Moment Wheelchair Life Became My Reality
Following an official ALS diagnosis, my doctor sent me to the neurosciences center in Utah and between appointments my husband and I went to the mall to kill some time. I couldn’t do it. I couldn’t walk that far even with a cane.
It was a lightbulb moment. I could still physically walk, but I was experiencing challenges that didn’t make sense. I needed a wheelchair.
I think somewhere in my mind I’d assumed I wouldn’t need a wheelchair until I physically couldn’t take a single step. I also hadn’t yet understood how much my respiratory decline was affecting my ability to walk (or run) any real distance. Both of those assumptions dissolved in that mall in Utah and I had to start seeing my situation more honestly.
Thankfully I had already been fitted for a power wheelchair but that was going to take months to arrive. I put up a Facebook post looking for a manual wheelchair to borrow in the meantime.
What I Thought It Meant. What It Actually Meant.
I want to be honest about what I thought getting a wheelchair meant in those early days. Part of me believed it was a sign of giving up. Like accepting the chair was accepting the disease in a way I wasn’t ready to accept. Another part of me somehow believed that you only use a wheelchair when you physically can’t.
I was wrong.
The wheelchair gave me a form of independence I’d been quietly losing without fully realizing it. I could suddenly find the energy to do the things I loved again. It was no longer taking everything I had just to walk across Walmart, leaving me so depleted I’d sleep the entire next day.
The chair gave me back the bandwidth to actually show up for my own life. Conserving energy never crossed my mind up to this point.
The manual wheelchair came with its own challenges of course. Someone has to push it and I felt guilty about that at first even though nobody around me ever complained. But from that manual chair I went on multiple trips, left the country twice and navigated a cruise successfully. I started finding my new normal from a wheelchair.
Then my Permobil M3 arrived. For what that chair costs it should be doing my dishes and folding my laundry. But what it actually does is give me the ability to thrive, to socialize and to be a full participant in everyday life with my family and friends. That’s not nothing. That’s everything.
The Greatest Gift From A Friend I’ll Never Forget
Transitioning from a manual chair to a power chair brought a new challenge we hadn’t anticipated. We couldn’t afford a wheelchair accessible vehicle. Not even a used one. So we continued using the manual chair for travel and appointments and outings until something remarkable happened.
A local friend who was also battling ALS had an extra accessible van and offered to let us borrow it for as long as we needed. He covered the maintenance and insurance for our family. That van changed our lives in ways that are difficult to put into words.
My friend Seth passed away in March 2025 while I was in hospice. I am forever grateful for his generosity to my family during his own fight. The van continues to bless us immensely and I think about Seth every time we use it.
What I Want You to Know
If you’re facing the decision to use a wheelchair and part of you is resisting it because it feels like surrender, I understand that feeling completely. I lived inside it. You’re making life and death decisions every day. And inbetween life and death decisions you’re finding new normals you never anticipated.
But here is what I know now that I didn’t know then. The wheelchair isn’t the end of your independence. It’s the beginning of a different kind. It’s the tool that gives you back the energy to be present for the moments that matter. It’s what allows you to show up for your own life when your body needs a different kind of support to get you there.
If you’re struggling to choose life in a chair because of debilitating disease, just remember, you’re not giving up. You’re adapting. And adapting is one of the most courageous things you can do to find a new normal.
For more on navigating life with ALS read What Is ALS? What I Wish I’d Known At Diagnosis and Don’t Wait to Do These 5 Things After Your ALS Diagnosis.
Both of my books were written from inside this journey including the wheelchair, the hospice stay and everything that came after.
Embracing the End was written while fighting for my life in hospice. Grab a signed copy here.
Embracing the End… Again was written when I unexpectedly didn’t die and had to figure out what comes next. Grab a signed copy here.
Want both? Grab the complete bundle and save with free shipping.
Disclaimer: I’m not a doctor or medical professional. Everything I share on this site is based on my own personal experience living with ALS. Nothing on this site should be used to diagnose, treat or make medical decisions. Please consult your healthcare provider for medical advice specific to your situation.
Embracing the End 
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