Run, Stacy, Run!
| AI ART, “The Race Within” |
“A throwback before my wheelchair days”
🏃♀️ Run, Stacy, Run!
Sometimes stubbornness keeps us going. Sometimes it gets in our way.
I’m stubborn. I’ll admit it!
Stubbornness has been one of my many lifelong patterns—and my personal companion throughout my ALS journey. It’s not all bad, though, because it keeps me from giving up too quickly when life feels like it’s spiraling out of control.
Recently, my stubbornness came into play at my ALS clinic appointment.
On a few occasions, my physical therapist had recommended that I try AFOs.
What the heck are AFOs?
Ankle-foot orthoses are lightweight carbon-fiber braces that slip into your shoes. They have plastic shin guards and Velcro straps around the calf and knee to secure them in place. They support the ankle, help prevent foot drop and dragging, and stabilize the knee from buckling. They can also assist with proper alignment while walking and help maintain mobility and stability.
I just dismissed needing them.
When my physical therapist brought up the topic again, she told me she knew I would agree with her recommendation this time.
I told her, “I’m not so sure about that!”
Sometimes I get a bee in my bonnet when it feels like someone is telling me to do something I’m not sure I need—or something I’m just not mentally ready to do.
Adding braces was one more thing to put into my already complicated routine.
And let’s face it.
They are not sexy!
Ladies who have been diagnosed with ALS have to throw the idea of being sexy right out the freaking window.
Can’t manage it!
And forget about shaving legs, shaving armpits, or, well… setting the table down there. Being spontaneous isn’t so spontaneous when it entails walking at a snail’s pace to get to the damn bed.
It is one of the many things I hate about this damn disease.
I’m sure men who have ALS think about this in their own manly way and get just as frustrated.
I’m really not sure how I went from leg braces to talking about sex.
Oh, yeah.
It was because I said leg braces aren’t sexy!
Looks like sex may need an entire blog of its own! Thats If I ever get up the courage to write about it! Intimacy is complicated when one of the partners has ALS!
🧟♀️ The Walking Dead
One day, I noticed that my legs and ankles were getting weaker. My foot was dragging, and my knees were buckling.
Combined with having very little upper-body muscle strength and arms that were basically dangling at my sides, I was starting to look like a walking zombie.
My husband actually validated this observation.
One day, he was walking behind me and started laughing out loud.
I said, “What?”
He replied, “You look like the Walking Dead.”
We both started laughing so hard because, well… it was true.
ALS had turned me into a walking zombie!
But after walking less than two feet and feeling like I had just run a marathon, my stubbornness finally started to subside.
I had a heart-to-heart conversation with myself.
“What if I get those braces and they actually help me walk longer distances? What if I don’t tire as quickly? What if they help keep me walking instead of needing to transition to a wheelchair? What if they help me look a little less like a walking zombie?”
Sometimes I need to reprimand myself and remind myself not to let my stubbornness get in the way of something that could potentially make my life easier and help me remain independent longer.
So, with my tail between my legs, I picked up the phone and made the dreaded call to my physical therapist.
“Soooo… I know I gave you a hard time about those braces, buuuut… I’m now thinking I should give them a try.”
She was gracious enough to acknowledge that, yes, I did give her a hard time. But she also reminded me that it is her job to provide me with information and recommendations so I can make the decision when I feel the time is right.
A truly good clinician.
Thank you!
👠 Bringing Sexy Back… or Not
My braces arrived.
And I was so right.
They bring sexy to a whole new level.
UGH!
Oh, well. I guess I’ll mourn that, too, and get over it.
What choice do I have?
On the flip side, I noticed immediately that they provided support to my feet, ankles, and knees.
Literally, I needed to learn how to walk all over again.
It was an awkward feeling and made me realize just how long my walking had been off-kilter.
But this is where the story gets interesting—and where maybe others can learn from my experience.
As I said, I’m stubborn and I always want to be independent.
So when these new braces arrived, and I had only been wearing them for a short time, they became a contributing factor in a fall.
The result?
A trip to a local urgent care, X-rays, and a diagnosis of a dislocated shoulder.
While at urgent care, attempts to manage my pain and manipulate my shoulder back into place were unsuccessful.
The physician assistant eventually sent me to the local emergency room for further treatment.
But before I move on to my transfer to the ER, I have to share something else.
😂 Apparently, My Husband Looks Younger Than Me
The physician assistant excused my husband from the room while she and my daughter helped me get into a gown for an X-ray.
As she was leaving the room, she looked at me and said,
“We can invite your son back into the room. I didn’t think he wanted to see you naked.”
My daughter and I looked at each other.
Then we burst out laughing.
I replied,
“You can let my 52-year-old husband back in the room.”
She told me that I looked like I was in my 50s…
but he didn’t.
Wow.
A dislocated arm—and I’m being told by a young, smart, beautiful physician assistant that I look like an old hag!
Talk about having a bad day!
The physician assistant left the room and told my husband,
“I’m sorry. They have a story to tell you.”
Of course, he loved it.
He does have a baby face!
💥 The Fall
After being transferred to the emergency room, a CT scan was completed of my head because I had hit it on the floor when I fell.
Thankfully, there was no indication of a brain bleed.
Thank goodness!
A scan of my shoulder, however, revealed that I actually had a fractured shoulder.
Can I say OUCH?!
Having someone try to put my shoulder back into alignment, thinking it was dislocated when it was actually fractured, was incredibly painful.
After an eight-plus-hour ordeal, I finally returned home with my family, my arm in an immobilizer.
All of us were completely exhausted.
Going to the ER when you have ALS is a whole beast of its own.
I was constantly having to re-explain my symptoms and my baseline.
The ER doctor told me your not holding your arm like someone who had a dislocation or fracture.
I had to explain over and over again to every person I encountered—doctors, nurses, yada yada—that before this fall, I was already unable to move my arms because of my sporadic-limb-onset ALS symptoms.
It was exhausting.
The next day, when my daughter texted me to ask how I was feeling, I told her I had gotten up, had my breakfast, and that her wonderful brother—also known as her father—was taking good care of me.
😂
🚶♀️ Back to Those Damn AFOs
Getting back to the AFOs…
When I wore them, they provided stability for my weak legs and ankles.
However, when I was sitting, their rigidity, combined with the weakness in my hip and leg muscles, made it difficult for me to get up from a chair by myself.
I shouldn’t have, but I got up by myself.
And that’s when the fall happened.
The fall that resulted in the exhausting, eight-hour ordeal.
At my next ALS clinic appointment, which was only about a month after receiving the braces, the AFOs were discontinued.
Why?
Because it’s not particularly helpful to have braces that I can only safely wear when someone is with me.
And now, because of my progression and weakness, I’m living at a wheelchair level.
I’m not blaming the AFOs.
They did exactly what they were supposed to do.
And if I had listened to my physical therapist long ago, I probably could have used them for a much longer time. They may have provided stability, helped me walk longer distances, and prevented me from fighting through the pain and fatigue caused by poor body mechanics.
But hindsight is always 20/20.
🧠 My Stubbornness Gets in the Way
What I’m learning is that my stubbornness really can get in the way.
Whenever I finally try something new that I didn’t want to do, I can honestly say:
I wish I would’ve done it sooner.
Most of the time, whatever I was resisting actually made my life easier.
Using a walker instead of continuing to walk independently while being unsteady.
Getting help from someone to feed me instead of struggling and using enormous amounts of energy just to bring a few bites of food to my mouth.
Accepting assistance with showers instead of struggling because I couldn’t reach certain areas.
Using a wheelchair instead of being unsteady and at high risk for falls and injuries.
And perhaps most surprising of all, I discovered how much independence I actually gained when I decided to use a motorized wheelchair and a transport chair that allows someone else to push me when I need to conserve energy.
That’s the strange thing about ALS.
Sometimes what feels like giving up your independence actually gives you more independence.
🏃♀️ Run, Stacy, Run!
Thank goodness I am no longer wearing those sexy-ass AFO braces.
Although I have to admit, when I first wore them, all I could think about was Forrest Gump.
Run, Forrest, run!
Or…
Run, Stacy, run!
I imagined running in those suckers until they finally broke apart.
I wanted my normal legs back.
I wanted to run for days.
I wanted to keep running until one day I could simply say,
“I’m done.”
Who doesn’t love Forrest Gump?
He is an inspiration to all of us.
And like Gump, one of the proudest moments of my life was when I ran several 5Ks.
One day, while sitting in a diner with my husband, I looked across the table and told him,
“I think I want to run a race.”
He looked at me like,
Are you freaking crazy?
And honestly, I could understand why he gave me that look.
For me, it was a crazy idea.
I had never been athletic. In fact, I pretty much tripped over my own feet all the time.
But it took months of training and a whole lot of determination to prepare for my first race.
It was in March.
There was snow on the ground.
When I crossed that finish line for the first time and experienced my first runner’s high, I felt something I had never experienced before.
It was a feeling of accomplishment.
Of pride.
Of knowing that I hadn’t given up.
And finishing that race was something I did for myself and no one else.
I was hoping to get my husband to experience the runner’s high with me.
He tried it once.
He hated it.
He said he would only get on the bandwagon if he could run for less than five minutes and there was beer or bourbon waiting for him at the finish line so he could experience his version of a high.
😂
Run, Stacy, run!
🍫 Life Is Like a Box of Chocolates
You never know what you’re gonna get.
ALS has certainly taught me that.
Sometimes I have to fight my stubbornness.
Sometimes I have to let go of what I think independence looks like.
Sometimes I have to accept help.
Sometimes I have to laugh at the absurdity of it all—even when I’m crying inside.
And sometimes I have to look back at the woman who ran those 5Ks and remember:
That stubborn woman is still in here.
She may not be running anymore.
She may be sitting in a wheelchair.
She may need help doing things she once did without thinking.
But she’s still here.
And she’s still saying:
Run, Stacy, run!
Until next time…
Keep dancing with life, one day at a time.
—Stacy
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| 5k Glow Run |
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| 5K Santa Run |
❤️😂❤️ Diane
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