I remember such random facts about my ALS diagnosis. I asked to listen to 80s music during my MRI and was sentenced to listening to a medley of Madonna tunes. The neurologist’s receptionist called the local clinic to schedule a second opinion for my “AL5” diagnosis (apparently, she wasn’t familiar with ALS, either). I ran into a fellow school mom in the lobby on my way out – could she see the devastation on my face? I spent the first night imagining the best way to kill myself – I was going to die, anyway, I thought, might as well take control of the process and timing. (Fortunately, I rebounded from that.)

I was 45 at the time, physically active and otherwise healthy.

I was supposed to die of cancer

Many of us have thought about aging and whether our fate is to be the 100-year-old who dies quietly in their sleep, or the 55-year-old who suffers a fatal heart attack while at work. I imagine most of us hope for the former scenario – a quiet, painless death after living a long life.

I always assumed I would succumb to the family disease – cancer – but not for several more decades. My mom was a breast cancer survivor, but her mother wasn’t as fortunate, dying when my mom was only 17. Mom’s father also died of cancer many years later.

And in 1996, I lost my dad to cancer, a devastating blow to our family, but further confirmation that I needed to be diligent about mammograms and well woman exams.

It seems so naive now, but that was my frame of mind at the time, which made the diagnosis even more shocking to me.

Bad shoes and aliens in my biceps

I noticed the first warning sign on the volleyball court. As I mentioned, I was an active 45-year-old woman who played volleyball year-round and trained for and participated in a now-defunct Avon walk for breast cancer, a fundraising event that required participants to walk 39 miles in a single weekend. I walked for my mom and other women in my life touched by breast cancer.

In the winter of 2011, while chasing down balls in the gym, it felt like my left shoe was loose, even to the point of flopping off my foot. I chalked it up to old running shoes and just tied the laces as tight as they would go. The problem persisted and affected my speed at the Avon walk that spring. I frequently had to jog to keep up with my friend and walking partner, Natalie.

Bad shoes weren’t to blame for what I was experiencing. The onset of ALS is different for every person, sometimes affecting their limbs first, sometimes beginning with their speech and swallowing. My early symptoms were in my left foot, but they were about to show up in other places.

In the winter/spring of 2011, I also started doing a “boot camp” style workout three mornings a week. I was fairly fit at the time, but I wanted to get in much better shape. I had nine-year-old twin daughters to keep up with!

Soon after I began the new workout, my biceps began to twitch constantly and noticeably. It looked like waves rippling just below my skin. I had never experienced anything like it. I joked to my doctor’s nurse that I had aliens under my skin, and should have known something might be wrong when she just looked at me with a worried expression. But I chalked this symptom up to the boot camp workout. Even now, despite everything that’s happened, I’m still a “the glass is half full” kind of person, never expecting anything to go wrong.

Aliens weren’t inhabiting my biceps, of course. I was experiencing fasciculations, another common ALS symptom. ALS, also known as Lou Gehrig’s disease, is a neurological degenerative disease that eventually leads to complete paralysis. The disease causes the motor neurons to die off, meaning that the brain can no longer tell the muscles what to do. In the first years after my diagnosis, fasciculations came to mean that I was getting ready to lose strength or control of another body part, as in, “Great, my calves are twitching. Better get the wheelchair ready.”

God bless The Givers

I discovered a new category of people soon after I was diagnosed – I think of them as The Givers. I was unaware of this characteristic in people prior to my diagnosis because I had never really needed help, and because, I shamefully admit, I had never been a Giver (although I’m trying to change my ways).

I had always been very independent – went out of state to a college where I knew no one (go Irish!), moved to Germany right after college to fulfill my commitment to the Army, and later in life I became a road warrior, traveling every week for my consulting job. I was strong and capable and rarely needed help. But that was about to change. Big time. Because successfully handling ALS is a group activity.

My employer at the time was amazingly supportive, sending my family and me to Disney World and accommodating my need for a reduced work schedule as the disease progressed. Two Givers on the team I managed also stepped forward, one bringing me homemade Cajun dishes when it became clear I wasn’t eating enough, and another taking me to and from work every day in my van when I could no longer drive. I was the main breadwinner at the time, so I needed to continue working.

And then my Catholic parish renovated our home.

My house, a quaint little Tudor built in 1927, was far from being handicap accessible. With all three bedrooms and the only full bathroom on the second floor, we were considering modifying our living room into a room for me, which was a less than ideal solution.

Members of our parish, St. Peter’s in Kansas City, had previously modified a parishioner’s house, and they offered to do the same for us. These amazingly generous people are architects, designers, and skilled tradesmen, and they transformed our attached, 2-car garage into a beautiful, spacious bedroom suite. Fundraisers and donations from fellow church members paid for the entire renovation, and church members brought us daily meals while our kitchen was torn up.

Talk about humbling. And uplifting.

The list of The Givers who helped and continue to help my family is long, and includes a retired physical therapist who came into my home for range of motion exercises, two new friends who regularly visit to pray the rosary, old friends who travel across town and across country to visit, a fellow school mom who gave me mani/pedis until her back gave out, and an amazing team of caregivers who sit by my side around the clock.

All The Givers in my life have taught me an invaluable lesson about generosity, which I’m trying to put into practice in my own ways.

A reinvented me

Within about a year after going on a ventilator, a good friend from college visited me and asked, “So, what have you been working on?” I thought to myself, “I’m paralyzed and on life support! What do you think I’ve been working on?” But my indignation soon turned to embarrassment as I realized I was being a slug. Don’t get me wrong, reading in bed for six or seven hours every day has its benefits, but I could have been doing much more to contribute to the household and exercise my brain. My family was the reason I chose to live, and I was not making the most of this additional time with them.

So I reinvented myself.

I started by focusing on household costs, learning new extreme couponing skills (it’s fun!) and being very disciplined with meal planning. But squeezing out costs wasn’t enough because ALS is expensive! So, I focused on bringing in income.

I’m not a “trained” writer, but I’ve always had decent writing skills, and years of corporate experience has taught me how to summarize and present information. Plus, my magical eye gaze tablet makes it very easy to create content and communicate with people. So I became a freelance writer. My most steady client is a multi-billion dollar software provider. It’s extremely rewarding to see my content on their website, and it feels good to contribute income to my family.

I started this book blog before I became a freelancer, and I think writing book reviews really helped polish my rusty writing skills. But writing practice isn’t the only thing I’ve gotten out of this blog. I greatly value the connections and reconnections I’ve made. These connections include new friends and friends from the past with whom I had lost touch. If you’ve noticed frequent comments from a guy named George, he’s an ROTC buddy from my college days. And Martha, who also regularly comments, is from my corporate days. I enjoy connecting with people through my blog, so please don’t be shy about leaving comments.

But wait, there’s more!

I was a lifelong crafter, mainly sewing mixed with other odds and ends. I’m not terribly imaginative, but I enjoy the process of making pretty things. My good friend and longtime caregiver is now my “hands” – I come up with ideas, she brings them to life, and we sell them in our origami-themed Etsy shop, FoldHearted.

I also taught myself how to make digital scrapbook paper in Canva and sell it in my other Etsy shop, KittyOliverDesigns. (Yes, it’s named after two of my cats. I’m bad at naming things. Exhibit 1: We named our family cat “Kitty”.)

Figuring out how to leverage existing skills and learning new ones has kept me going. I look forward to each day because I know it will be filled with good people and enriching activities. Despite everything, life is good!

This is the part where I ask you for money

There is no cure for ALS – it’s 100% terminal. The only reason I’m still alive is because I chose to go on life support, and I have an exceptional family and team of caregivers. Only about 5,000 people in the US are diagnosed with ALS every year, out of a total population of roughly 332 million. In other words, my fellow ALS patients and I account for a teeny tiny percentage of the overall population.

This makes ALS an orphan disease, and orphan diseases don’t receive much attention from Big Pharma. This is why donations to ALSA and other ALS-focused groups are so important. ALSA funds research, and they also provide support to ALS patients and their families.

Please consider donating to ALSA via my fundraising page. Your money will be put to good use.

And thanks for reading my ALS story. I don’t often talk about myself, and discussing ALS so candidly violates my top coping mechanism (the first rule of ALS is: you do not think about ALS), but fundraising for ALSA is important to me. It’s one of the ways I’m trying to become a Giver.

XO

Michelle