Recovery

“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.

22 years is a long time…

The last few weeks have had some rough days where I’ve had to remind myself that “I signed up for this being human thing!”  I don’t usually get sick, but when I do, it can wipe me out!  This last one seemed to cry out: “You’re old!”  Sadly, I am! 

March 16, 2026 was my 22nd stroke-aversary. 22 years…that’s a long time!   (My son, who was in first grade when I had my stroke, is now close to the same age I was when I had my stroke – & now he helps with the upkeep on my blog & lives nearby with his family – my 2 grandkids.  See, I’m old!) 

Speaking of my grandkids, we recently went on a trip with them. We had so much fun!   

Back in February, my grandson, James, & I had our first “real” conversation: 

James noticed I had a band-aid on my hand, & asked, “Grandma, what happened?”  I said I got an owie & he asked whaț kind of owìe. I tried to say, “burn,” & he said, “A what?” & he looked at me while I slowly said “burn”.. not thinking he’d understand. But he said, “oh, a burn”.  This conversation blew my mind (it seemed too “old” for his age), but it has led to some fun interactions with James in the following weeks.  He’s able to understand me like 80% of the time, so I can interact & tease him.  Back when my girls were this age, I couldn’t speak at all, so this is new territory for me, & very exciting! 

A few weeks ago, I was preparing to teach a lesson about goals in Young Women’s (11-17 year old girls at church), & I had ChatGPT research my website, & help me write about my “speech goal.” Here’s what was written: 

“In 2004, after my brainstem stroke, I was told I would never speak again. 

At the time, that seemed believable. I had a trach and couldn’t control my breathing. Sound wasn’t something I could choose to make, and speaking felt like an impossible long-term goal.  But I was determined to do it! 

What changed everything was learning to break that goal into small, reachable steps. 

My first goals had nothing to do with words—they were about breathing: 
controlling my breath, making simple sounds, and coordinating breath with voice. Later, those goals became saying a word, then a short phrase, and eventually several words on one breath. 

Each small goal is built on the last. 

Today, I can speak well enough to teach this lesson. I’m still hard to understand and still need a translator—but I can speak. Because of that, I consider my original long-term goal achieved. 

Now I have a new goal: to speak clearly enough that I don’t need a translator. My first step is learning to speak even when I get emotional and cry.  Sometimes I can do it.  Most of the time, I can’t! 

My life has taught me this: 
Big goals don’t happen all at once. They happen one small step at a time—especially when the finish line feels impossible.” 

Ironically, I shared this with my AI voice (because it reads faster than I read).  I don’t think I’ve said much about my AI voice, so here it goes: A year before my stroke, I recorded some books onto cassette tapes for my kids to listen to while I was gone. I was so insistent that it needed to be done that I did it after everyone went to bed, the night before I flew with my mom to see my sister in London. Fast forward 20+ years. My youngest daughter& her husband converted them to digital & made a unique AI voice with the recordings of my voice & added a Chicago accent (I grew up there). It’s pretty robotic if I type, so Sophie reads (what I write) with my AI voice to add voice inflections.  It’s pretty cool to have the child who remembers my voice the least sound like me! 

 
When I did my fireside last summer, I used my AI voice for 80-90% of the speaking. For the rest, I spoke…but since I talk so quiet (& I still sign when I get emotional), I asked my friend/helper, Angie, to repeat everything I said (if u wondered, yes, my fireside was recorded & is on my YouTube channel).   

Later, I shared a condensed version of my fireside for a Young Women’s lesson at church.   Mark told Angie to NOT repeat me during my YW lesson, so that was my first lesson teaching semi-alone (since my stroke)!  A few months later, I shared the above message (written with help from Chat GPT), & soon after, I was asked to teach the 14-15-year-old girls (Young Women) at church!  If I was told 22 years ago about all that my future held for me, I wouldn’t have believed it – it’s hard enough to believe right now while it’s happening! 

“What are your thoughts about traveling?  We have heard horror stories about broken wheelchairs, etc. I wanted to ask you because you guys travel.”

“Traveling is my way of not letting a disability control our lives. Overcoming obstacles feels like an improvement in health- even if nothing actually changes with physical health. It is a mental win.” 

–Mark

Traveling is mentally, physically, & emotionally draining, yet it can also feel like a huge win because YOU “won,” not the disability!

My #1 advice: DO NOT take the heavy wheelchair u use at home.  Get a lightweight, collapsible one that has a removable lithium battery. Don’t underestimate how important your travel chair is: it has the power to increase/decrease anxiety & change your perspective on your trip!

I know this from experience.  I dreaded my old travel wheelchair, & traveling has been tough for me. In the past, travel has meant a severe downgrade in my lifestyle.  Not only did I lose much of the independence I had worked so hard for, but I also had to find ways to still do a little bit of therapy & my chair (which is a part of me now) wasn’t very comfortable, it didn’t have many of the features I enjoy, was wobbly, & harder to drive. 

At first, I was in a manual wheelchair – that was a nightmare since I only have 1 working arm, so I could only move in circles!  I upgraded to these collapsible chairs that can be either power or manual.  It is frustrating to be left in manual mode somewhere (since these chairs have little wheels), but I was so happy that I could move that I tolerated that how wobbly it was, how difficult it was to drive, how it had manual recline, etc. 

But I just got a new travel wheelchair: Majestic IQ-9000 from Comfy-Go Mobility.  I can’t tell u yet how future trips will go, but I can tell u that for the first time, I’m excited to use my chair, & I felt my anxiety decrease when my new travel w/c arrived: It isn’t wobbly, drives smoother than any other chair I have used (it starts/stops smoothly – if Mark is driving me with power on & suddenly stops, I don’t get knocked around), & it has a remote (which may not be a big deal, & may mean something else to Mark, but to me, the remote means that after 20 years, Mark & I can finally hold hands as we “walk”!)  I cried (with happiness) when I realized this!    My chair also has a lock feature that every wheelchair needs (so kids can turn it on & off, & play with the joystick, but can’t move the chair). This wheelchair has power recline, a “real” horn, & it makes a beeping noise as I back up. (Kinda a cool safety feature cuz people are warned, but we figured out how to turn it off – thank u, YouTube – so I could use it in a quiet place, like a church!) 

I have a bag I like my chair to be put into (then they put it below with strollers & luggage), though there is a closet by the airplane door, & they are required by law to put a wheelchair in the closet, if a wheelchair is not there already.

At our destination:

– I’m fortunate because my husband can lift me, so we don’t need a w/c van or lift, but those can be rented. 

-We always ask for an accessible room with a roll-in shower, though it’s never guaranteed (even when u book one).  They usually have shower chairs or something u can sit on.

-The big thing is to be creative in finding solutions for whatever doesn’t work out – another way I’m fortunate is because my husband has had creative solutions, like a black sock stretched over a ripping armrest, & a wood ball from a craft store in place of a missing joystick!  As Mark puts it, “There are always possible problems. We have had repairable damage to chairs, but most has been fixed after a quick trip to a hardware store or by using tools or emergency parts kits that I have started bringing after a few minor incidents (the kit has things like an Alan Wrench, industrial strength Velcro).”

“The unknown is scary, but it becomes comfortable with practice.“ (Mark)  For more support, u can join something like “Accessible Travel Club” on Facebook.

From the perspective of a caregiver (with an additional focus on international travel):

There are more options than most people realize. There is an entire travel industry around disability travel. There are people in other countries who do all the planning and work if you need it. Cruises are excellent because it feels like staying in a U.S. hotel with daily visits in foreign countries where you do not need to worry about what accessibility is available.  (While) you can never be guaranteed accessible rooms at hotels, you are guaranteed a specific accessible stateroom on a cruise ship where you can plan on things such as left or right-hand handrails near the toilet or in the shower. You just need to book early for cruises to ensure that a limited quantity of staterooms and excursions are available. 

In many ways, many countries outside of the U.S. are more accommodating than our own country. Foreign countries often fast-track wheelchairs through airports and customs. Some countries often do not charge the caregiver at some venues. There is a guilty pleasure when a foreign guide or venue employee goes crazy on someone who should not be using accessible facilities. It typically requires a bit of planning and a few calls or emails to figure things out. We use Sage Travel in Europe since they have trusted guides who understand accessibility. They also act as resources for finding accessibility supplies if needed. They often arrange accessible cruises and trips where applicable excursions and hotels are arranged. I am jealous of some foreign disability toilets where they can have adult changing tables and lifts installed. 

We do not bring the heavy chair with all the bells and whistles. We have a smaller and collapsible travel chair. It is not as comfortable, but it allows for more travel options. Tropical locations (most islands) are difficult to visit. Even if there are cuts in curbs in the towns, most buildings near a beach are on stilts due to hurricane season precautions. 

It helps that I am strong and pretty handy with fixing things. On a few occasions, I have had to carry my spouse over small steps or on full flights of stairs. I know how to fix things and can solve problems really well. AirBnB’s are notorious for over promising. Be prepared to find a shower stool or some adaption that you need for specific needs. If you can find a good business class flight you can get fully reclining seats on long haul flights. Just because it is a first or business-class flight, it does not mean every leg will have all the perks. You can ensure what you need if you carefully vet an itinerary. Business class flights also give access to lounges, which make distance travel much easier. Of course, not everyone can fly business class every time. If when we have flown business class, airplane bathrooms are tiny. We have made it work but I have friends who use a blanket and cath at their seat. A good support team of family or friends is super handy and required in some situations. 

Overall, international travel can be better than domestic travel. London is a great place to experiment with. We are lucky to have a direct flight from Austin. Prior to the pandemic, it was pretty cheap to fly to London on a direct 9 hour flight. You can take a train to Paris from London in a little over 2 hours. A 3 hour flight from London will put you on most cruises in Europe. 

The Lord is with me

March 16 (Thursday this week) is what I affectionately call my “stroke-a-versary.” 19 years ago, on March 16, my family was told that I had 24 hours to live, & that if I survived, I’d only be able to blink.  Not only have I exceeded the doctor’s expectations, but I have slowly had things like my right arm, speech, & more return…things that assist me in serving the Lord.  At the time of my stroke, I was the primary chorister (teaching music to the kids at church who were 18 months old to 12 years old), so naturally, I sang the songs in my head, while I lay in my hospital bed recovering from my stroke. It was there that I learned the power of the primary music I had been teaching, as I (through song) received assurance that the Lord WAS there…& He continues to stay by my side!

I have begun conducting in the primary. That means I welcome the kids & help direct the flow of the meeting.  It was through inspiration that I learned how it was possible, & for two years I’ve been trying to figure out the kinks & get brave enough to do it.  Ha!  At first, I was scared to death (so I believe the Lord helped me that first day), but as with any anxiety, the more I have done it, the easier it has become.  & as an added bonus, by doing it, more people (teachers, other leaders, & even some children) are learning how to understand me, so I’m less afraid to speak up when I visit classes or see them in the hall!

Lately, the primary lessons have had a lot to do with people being healed by Christ, & on how Christ can heal us.  Since I wouldn’t be surprised if there’s a questioning child somewhere who wonders about me & how it affects their faith in the Lord healing them, I shared this with my primary teachers:

“The primary manual says to, “Explain that sometimes a miraculous healing is not the Lord’s will, but we can still be blessed by His love and comfort.”  I know that is the case for me, &  that I will eventually be healed in His own time.  In the meantime, I have been healed in other ways, & strengthened to endure the ways I have not been healed.“  Often I am unaware of how I’m being strengthened until later.  Here’s one:

I now like to start my day with activities that point me in the right direction, so I like to do morning prayer, meditate, & do my personal scripture study.  I haven’t always done this.  The routine evolved over the last 19 years.  On a particularly difficult morning, I decided to listen to the podcast, “Don’t Miss This” for my personal scripture study.  I turned it on because it was my routine to hear God’s word then, & I was so tired, I just wanted to listen to it, but they always make me laugh!  Between being uplifted by God’s word & the clean humor, it’s like my slate was wiped clean & it changed my entire day!  I am so glad I have implemented healthy routines in my life that can aid me in the struggles I face!

18 years & still going strong…

A few days ago, I just wanted something to listen to, so I turned on a podcast I like.  (Better Than Happy).  I heard the title of the podcast (Managing Depression with EmyLee McIntyre).  I didn’t think it’d apply to me because I’m not currently depressed.  But oh, how wrong I was!  18 years ago, I was VERY depressed, & the podcast applied so well to my 18th stroke-a-versary (which is today, 3/16)!  First thing to catch my attention was this gem of a conversation:

You create happiness cause you’ve been through hard things & you’re still ok…

-EmyLee McIntyre

We don’t have to dislike who we were in the past to become a different version of ourselves… “But I liked her! I still want to be her!” Ok. You can like her AND become an even better version of yourself.

-Jody Moore

(because) She’s you!

EmyLee McIntyre

Then they shared this cool idea:

“Write down a thought u want to have & each day write down 3 evidences of how u saw it was true” (for example, if you are having trouble believing that God Loves u, write down “God loves me” & each day find 3 reasons why that is true)

What a fantastic idea!  I don’t need to prove to myself that God loves me – these past 18 years have been filled with reminders of how God loves me & has stayed by my side these many years.  But for fun (& because it has been on my mind), I will list 10 I have seen recently – though there have been many, many more!

  1.  Because of choices He has prompted, I believe it helped me to have a quick encounter with COVID (though I’m still recovering, I feel great & well cared for)
  2. My husband was sick before me, so he could help me when I was too weak to do anything
  3. I am always amazed at the physical strength of my husband when he’s ill, & knowing how weak I got, there’s no doubt in my mind that he received heavenly assistance!
  4. My helper was also sick slightly before us, so she has also been here & could help me both when Mark was sick, & while I am sick!
  5. By some miracle, I didn’t get sick with COVID until my helper AND Mark were both well enough to help me, but it was close enough to when they had COVID that they could feel confident about their antibodies
  6. I saw my grandbaby just the day before we had to quarantine
  7. In 2020, I finally had surgery (that I’d put off forever) on my deviated septum…it has TOTALLY helped me deal with COVID
  8. Not too long ago, my husband picked up Navage (which basically sucks your boogers out – Ha, Ha).  Not to sound like a commercial, but it has helped me SOOOO much!  I’m less congested than I’ve ever been from a common cold!
  9. Years ago, it seemed like a mean, cruel trick how my diet had to suddenly change, but now all I see is how it blesses me!  The week before I had COVID, my diet was jam-packed with anti-inflammatory foods!  Stuff I never would’ve eaten 18 years ago!  It was like I was being prepared for a battle!  … & the clincher: it wasn’t even planned! (which is strange, since I’m a planner!)                
  10.  Recently, I was reading an article called “The Joy of the Saints” (https://www.churchofjesuschrist.org/study/general-conference/2019/10/14christofferson?lang=eng), & I was reminded of a man who had a lot of influence in my life during the early years after my stroke.  The article read, “ Once in an interview, Jack observed: “Problems will come into all of our lives; it’s part of just being here upon this earth. And some people think that religion or having faith in God will protect you from bad things. I don’t think that’s the point. I think the point is that if our faith is strong, that when bad things happen, which they will, we’ll be able to deal with them. … My faith never wavered, but that didn’t mean that I didn’t have depressions. I think for the first time in my life, I was pushed to the limit, and literally there was nowhere to turn, and so I turned to the Lord, and to this day, I feel a spontaneity of joy.”

Now I should pick a phrase I want to believe, but am having trouble believing…