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.

What is Blink Spelling?

You may think that communicating with someone who doesn’t talk, move, or have any facial expression is impossible – well, not quite. In the beginning, I couldn’t move at all, so I communicated by blink-spelling:  

I couldn’t control my blinking enough to use blink once for yes and twice for no, so I’d close my eyes (another option is to look up for yes and close his/her eyes for no).   

When I needed to communicate, I’d close my eyes, & someone would say the alphabet.  I’d open my eyes when the letter was said: (4 example, if I wanted to say “go,” then I would close my eyes as someone would say the alphabet, & I would blink when they said the letter “g:”  Then I’d close my eyes again as they’d say the alphabet again,  I’d blink when they said the letter  “o.” I’d repeat this for the word “now.”   There was no way to indicate a space, so the interpreter had to look at the letters “gonow” (either on paper, or in their head) &  figure out what I was saying.   Sometimes, it takes a bit of detective work to try to make words out of a chain of letters, and you have to clarify things by asking yes/no questions, but it works. 

That’s it. Give it a try. 

Many people use a letter board (as pictured & described below) – that way, the entire alphabet isn’t required each time!  Unfortunately, I had severe double vision (my vision is not 100% better now, but much improved), so I couldn’t see well enough to do a letter board. 

But if you make one, use a whiteboard (you can use dry-erase markers on it and you can wipe it clean). Make 6 rows containing the alphabet and numbers. The first row is “a-d,” the second row is “e-h,” the third is “i-n,” the fourth row is “o-t,” the fifth is ”u-z, and” the sixth row is “ 0-9.” In this way, each row of the alphabet began with one of the five vowels. Use stick-on letters and numbers to create the rows. It looked (roughly) like this: 
_____________ 
1 – a b c d 
2 – e f g h   
3 – I j k l m n  
4 – o p q r s t  
5 – u v w x y z  
6 – 0  1 2 3 4 5 6 7 8 9  

—————— 
(I didn’t have this when I tried a letter board, but u may choose to have a 7th row with “@”, “. (dot)” and “?” – try spelling an email address without the first 2! The “?” Is useful because very often one spells a question but the “listener” doesn’t notice it’s a question and the “talker” has to spell “that was a question” !) 

The process of communicating goes like this:  

Hold the board within the stroke survivor’s range of vision and ask him/her to indicate the row the first letter was in by looking up or closing their eyes when they get to that row. Then ask him/her to look up again.  

So if he/she wanted to say “hello”, start by saying “row 1, row 2”  When you say “row 2, he/she would indicate yes. Then point to the letter e, the letter f, the letter g, and the letter h, and he/she would indicate yes for h. Then take a dry-erase marker and write the letter “h” on the bottom half of the board.   

Begin the process of scanning rows and letters again.  

We’ve had some humorous spelling conversations, where letters got jumbled, or the end of a word wasn’t clear. Then there will be times when spelling some words allows for some rather interesting beginnings of the words, that may lead you think of the wrong word. 

It is a very time-consuming process, but it can be used if you can only move one part of your body – be it eyes, mouth, finger, or whatever.  For the stroke survivor, family and friends it can be a really rewarding method of communication. 

Once the stroke survivor regains some movement in a head or arm (not a lot is needed), they can have a stick strapped to them/glasses with a laser beam, etc. and point to the letters, or a laptop with a wide screen and key board with big letters 

There is software where letters and numbers will be read out loud (123 will be read as “one hundred and twenty-three;” 12345 will be read as “twelve thousand, three hundred and forty-five.”) The important thing is to remember to spell words phonetically – and remember that the module ignores capitals and punctuation. 

Talk with a rehabilitation technology department, as well as a speech and language pathologist. They will have all sorts of suggestions for communicative assistance. There are glasses with laser beams, computers that track eye movement or can read the letters that you think, and lots of other helpful tools. 

If you have a loved one who is locked in, he/she needs so much love right now. There is no telling what is going on in his/her head that he/she cannot tell you. There are so many stages to go through before you smile again; it’s hard for all of you. But never give up. If you’re breathing, I believe you have a purpose for your life. 

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! 

Me, busy?!

I have no excuse for not writing sooner – people say I’m busy, but I’m not sure why I’m so busy! Ha! I’ve been taking a writing course, working on my mental health, traveling – but there’s been downtime in between…I guess I’ve been doing more therapy with my increased downtime, however, I wanted to post about Halloween.

We just had our ward trunk or treat on Oct. 30, & I was excited that I could go off on my own this year, & talk to people without anyone with me…& this time, I did very little writing (only a few times, cuz there was loud music). I was shocked by how well several people did with figuring me out! This happens more frequently now (people being able to talk to me), but it is always exciting for me (10+ years of not being able to speak might be the reason why! Haha). As for my costume, I wore what I wore to my SILs Halloween party… I will share a video, but basically I was abducted by aliens (shout out to Ron for the awesome idea, & to Angie who made the UFO that was above me, with a light shining down on me, & there were iridescent streamers around me to simulate being beamed up).

We also went to a trunk or treat with my son, DIL, & grandkids, where I went as my teenage self – minus my big hair & hoop earrings. Haha

As for my travels, the “Lynn Family reunion” (my kids, their spouses, & my grandkids) went to Wyoming. We take turns planning reunions, & this year was Sophie & Davis Sophie went all out, complete with goody bags, signs on the doors in the house, games she’d made, etc. A favorite “tradition” is taking a family picture- & this year we added my granddaughter, Winnie (Rowynn)!

Mark, Mark’s sister, Margot, Margot ‘s husband, Jasen, & I also took a cruise to Italy, Greece, & Turkey. I thrive in small groups & had a great time with just the 4 of us! I have always enjoyed Margot’s company, & I was so comfortable with she & Jasen – it probably helped by how well both Margot & Jasen did with understanding me!

So I am in the alumni life story writing class (for the writing class I took) & I was on my cruise during the last class, so I was watching the replay & realized I was doing other stuff as I “listened.” The thought came to me to just pick one, so I can put my heart into it. So I just listened to the re-play, but I should probably always do that. Is that why I’m considered busy? But how can I do just one of those things?! I try to rotate & be present with whatever I try to do, though I struggle when I’m listening & not doing.

Update

I have tried for years to speak in church, but I always either freeze up, or get too emotional to speak.  But I finally succeeded & I spoke at my fireside!  I am so excited! I have NEVER felt so comfortable in front of such a large group!  I know there were prayers & a comfort blessing that helped.  I felt like I was just talking to friends & it helped me to release any tension through laughter. I’m actually grateful for all the tech & help we had, since it helped me relax & reminded me of my focus –to have faith in Him!  It also helped that the topic required little thinking (as it was about my life & much of it was recorded on AI:  Speaking of AI, I meant to say that the AI voice was made with recordings of my pre-stroke voice, but I forgot!  Cool, huh?)  The AI voice sounds very robotic if I type it, so my daughter, Sophie read with my AI voice to provide voice inflection!  (Sophie was only 2 when I had my stroke, & has no recollection of my voice, but ironically sounds a lot like me!)     

Anyway, if u watched my fireside on a recording or on zoom, I’m not sure if u could hear me, but those in the chapel could (hear me)!  It was soooo cool! I spoke so well & so clearly …I can’t believe how clear I was (for me anyway – haha!)!  Shout out to Red Arena/horse therapy & to my music therapist for all the speech help & building core strength!  

Today I read something that was written by Carrie Newsom in an article from “The Mighty”   

“Sometimes what we consider our greatest “faults” or “weaknesses” are actually our most incredible gifts if we reframe them in a positive way and learn about what they can do for us.”  I totally agree & have seen my “weaknesses” become strengths as I rely on Christ.     

Sorry for another long break: I took a 12-week writing class (called Journey to Legacy) to help me write “my story.”  It has been a struggle emotionally, but I’m so grateful for what I learned & for the help I received!   

In other news, my first grandaughter was born!  (Rowynn, but her nickname is Winnie)  I now have grandkidS!  Originally, I was called “grandma” by default (since I hadn’t picked a grandparent name, & my husband wanted to be called Grandpa). I said I wanted to be called what my grandson called me, so I was called “grandma” until my grandson, James, called me “maymaw” (spelled phonetically, but we spelled it “mamaw”)   Soon after, James could say “grandma.”  Now he calls me both names, but my kids are trying to make “mamaw” stick.  (What’s funny is that he was learning to say “pumpkin” when he was learning “Grandpa,” so my husband- who wanted to be “grandpa” is “Pum-pum” – my husband ended up being named by our grandson & I did not!)  We’ll see what Winnie calls us…At first, I was very opposed to grandma, but it is endearing now, & I’m now old enough to be called “grandma,” so I don’t mind both names!  HaHa!