Author: Jennifer Lynn

“The Person Who Has to Live with the Solution”

Last week, my daughter, Sophie, stood at the podium as the cohort president for her class of future speech-language pathologists at Rocky Mountain University of Health Professions. She spoke at their White Coat Ceremony, and while I’m incredibly proud of all she’s accomplished, one part of her talk especially stayed with me.

“Behind every diagnosis, assessment, and recommendation is a whole person whose priorities, fears, and hopes matter too. We should never become so focused on solving the problem that we forget the person who has to live with the solution.”

I don’t know if I’ve ever heard a better description of healthcare.

Fifteen years ago, I wrote on my blog, “Though I don’t have a speech therapist, Soph often is my best speech therapist.”

I could still say that today.

Sophie’s quote isn’t just something she believes as a future SLP. It’s something she’s lived for years.  I’m not just someone who had a brainstem stroke.  I’m her mom.

Twenty-two years ago, a brainstem stroke destroyed the pons in my brain. Learning to communicate afterward wasn’t just about pronouncing words—it was about learning to live in a brain that processes the world differently.

One of the changes I rarely talk about has nothing to do with my speech.  It’s noise.

Most people’s brains automatically filter sounds without them even realizing it. They tune out the air conditioner. They ignore conversations across the room. They separate one person’s voice from the restaurant chatter. Their brains effortlessly decide what’s important.

Mine doesn’t.  Restaurants can become exhausting. Group conversations often feel impossible. Background noise competes with every word someone is trying to say. Instead of joining the conversation, I often end up quietly sitting there because I can’t isolate anyone’s voice well enough to follow along.

I’ve always enjoyed time alone, but since my stroke, I often retreat to my craft room simply because it’s quiet. One-on-one conversations are much easier than groups. My brain has to work so much harder to process competing sounds that noisy environments leave me mentally drained.

For years, I assumed this was simply one more thing I had to accept after my stroke.  Then my daughter recommended I try Loop earplugs.

I’ll admit I was skeptical.

When I first tested them at home with the TV, I didn’t notice much difference. My helper/friendAngie suggested that maybe they worked better with actual human voices.

She was right.

After dinner with my family, I texted Sophie:

“The background noise is still there for me, but it’s reduced—I probably hear like a normal person! 😂 At first I thought they weren’t working because I could still hear the background noise. Then I realized I’d actually been involved in every conversation instead of sitting alone at dinner like I usually do. I even heard James…though I couldn’t hear myself respond to him! Haha.”

That realization almost made me cry.  I wasn’t hearing perfectly.  I was hearing better.  & better was enough.

Since then, I’ve started wearing them more often. I wore them to the Austin Rodeo this year, and for the first time, I realized how exhausting the rodeo had always been for me. I’d always thought I enjoyed it—but I also left completely drained. With the earplugs, I didn’t just survive the experience – I actually enjoyed it.

This summer, before going to see the  Monster Truck finals & Stadium of Fire—a huge concert (Brad Paisley this year), drone show, and fireworks spectacular—I did some research and decided to try Loop Experience earplugs.

Oh. My. Gosh.

They made the night at least 100 times more enjoyable. The show itself was incredible—I imagine they went all out for America’s 250th birthday—but for the first time I wasn’t spending all my energy trying to process the noise. I could simply enjoy it.

Though it may seem it, this post isn’t about earplugs.

It’s about Sophie’s quote.

Healthcare can become so focused on fixing problems that we forget to ask what life is actually like for the person living with those problems.

Sometimes the biggest victories aren’t found on a swallow study, an MRI, or an assessment.

Sometimes they’re found around a noisy dinner table where you realize you’ve actually been part of the conversation. Sometimes they’re found at a rodeo that no longer leaves you exhausted. And sometimes they’re found at a fireworks show where you’re finally free to focus on the wonder instead of the noise.

That’s why I’m so proud of Soph.

Not because she’s learning anatomy or physiology or how to interpret tests.

I’m proud because she already understands something that can’t really be taught: Behind every diagnosis is a person. And sometimes helping that person simply means helping them enjoy dinner with the people they love.

About a month ago, Soph did a swallow study on me. The clinicians saw aspiration. I saw 22 years of birthdays, motherhood, laughter, church talks, rodeos, and dinners with my family. They weren’t wrong about what they saw—but their findings weren’t the whole story. Sophie’s assessment made that clear, & while she makes suggestions, she knows that some things will not work for me.

Sophie’s quote at her white coat ceremony is what she lives.  She knows that both matter: the diagnosis AND the person…and I’m grateful she’s becoming the kind of clinician who never forgets that behind every diagnosis is a whole person.  The world needs more healthcare professionals like that.

Accessibility

Recently, we drove to Dallas & I used my portable external catheter (from Purewick – I’m sharing this so other stroke survivors know about this, because it has been a game changer for me).  Sitting on it, initially, is not the most comfortable thing, but IT’S SO WORTH IT because I gain so much freedom & lose so much anxiety!  There’s a lot I put up with now that I never thought I would, because it makes my life better.  Happier.

Last month my grandson invited Mark & I to his swim lesson. When my DIL told James she’d ask if we were busy, he said “Grandma is not busy for me. She’s alright”. I was surprised by his answer. Usually if Mark can’t drive me, I can’t go.  But when I do go, Mark does well finding places I can go (thank u also to ADA).

Then I realized there are times at home when Mark’s working, but I can still play. At home, I can always be there for him. I hope he feels the same way when he grows up & I can’t go to everything…case in point:

A while ago my friend/helper Angie invited me to watch her son play soccer. I hesitated to say yes, because I needed a ride, & I needed to consider my schedule (I can’t usually use the bathroom when I’m out, so I have to factor in if to see my schedule allows me to use the potty at home before I leave,)

I forgot everything else I need to do though (if I what to go somewhere new) because Mark usually takes care of it  – & I’m so grateful he does,  because sometimes I’d rather stay home than figure it all out (things like checking out the parking situation, see if i can even get in, see if a stadium has cement I can roll on to an accessible seating area, or if it’s a home, I need to contact the family to find out I need a ramp & if I can even access a door…). I’ve always been a homebody, but the longer I’m disabled the more I’ve become even more of a homebody because going anywhere unfamiliar is exhausting! I can’t just go!  I hate it & usually avoid going to unfamiliar homes because it’s just too much work!

It wasn’t until I talked to Angie the next day that I was reminded how I missed many of my kids’ games & activities just because it was too risky to take me to an unfamiliar stadium or building. I grew up in a family where we supported each other in everything, & it broke my heart to hear my kids ask, “is mom coming?” as they walked out the door, because I wanted to go, but it wasn’t feasible!  How I miss the days when I could leave the house without a second thought of if I could get in & if I could use a bathroom (personal note: I am SO grateful to those who take care of this – like my SIL & daughter who recently opened a business in Utah, “Sunny’s Luxury Suites: dog boarding & daycare” – click on the words to see their website)

Even if a place is accessible, there’s no guarantee I can use it. People love to occupy the single stall bathroom, the bigger dressing room, the closer parking, etc. I try not to judge, knowing that even disabled people have more than 1 friend (I have a pet peeve that I can usually only sit by 1 person, & I also know not all disabilities are visual). However, many times, even if there IS a bathroom Ì can use, I oftenwait 20 minutes  to see a single, very healthy guy walk out of a stinky bathroom – I have to use it after some guy was  in there alone so he could poop alone, or some able-bodied person just wanted to use the nearest toilet…Arg!

Another “favorite” is particularly popular bad on  cruises: the elevator wiłl open the doors & it’s often filled with healthy able-bodied teens who could easily walk up a flight of stairs but rather the walk a flight of stairs, but even after seeing me & several other wheelchairs waiting, they stay on the elevator & make us keep waiting.

& even though u can ask for an accessible hotel room, there are no guarantees u will get it!  (I don’t know what other people do who don’t have a husband who can carry them! I think the Lord  helps somehow because I have seen Mark do stuff I can only guess the Lord was behind it!)

& my personal “favorite”: Handicap parking.  Handicap parking is THE WORST – & I don’t know who is worse … able-bodied people, or disabled people!  Those hash marks are not decoration, but BOTH able-bodied AND those who can legally park there will park on the hash marks!  & just because u can legally park there doesn’t mean u should!  I can’t tell u how many times we parked in the back of the parking lot so no cars would block my ramp, or I waited in the rain, so my husband could back up enough to let me in!  If u don’t need the curb cuts (like wheelchairs do) & can walk, then don’t fill up the van handicap parking! & if u aren’t disabled NEVER EVER park in ANY handicap parking, even if u think u will “just be a minute” or have a sign from a friend/family member that makes it legal. That minute could be when someone comes & needs it, or if all the van spots are filled up, u could be taking a spot from someone like me who needs access to those nearby curb cuts.

I’ll get off my soapbox now…I can’t say I was perfect (then, or even now) & I can’t say I have never done any of these things. There’s a serious lack of education about this stuff. I was clueless about how my actions affected people in the disabled community until I was in it, & if I ever hurt anyone, I hope they can forgive me. Dear reader, especially if u aren’t disabled, I hope your eyes are opened.