travel

My 21st stroke-aversary

I figured I should make an appearance, since my 21st stroke-aversary is on March 16.  So much has gone on, though, that I don’t know where to start, & I feel so overwhelmed by just the idea of writing…so I keep procrastinating.   Procrastination usually involves eating, gaining weight, & then a class/challenge/goal to lose weight.  (I’m in that class now!  Haha)  I also procrastinate by watching more TV & YouTube, & distracting myself in numerous ways (like writing about how I can be distracted!  HaHa)

I started to write a blog post last fall, but that time of year would get really busy with my primary calling (so I used to not travel much between September-the first Sunday in January, & I let my husband – who loves to travel – go places with a friend/family member) It was just too much for me to leave during that time, & I stayed home…which allowed me time to write a blog post.  However, I was in my 5th year as primary president & I’d been trying to find a new balance in my life, which meant trying to do more with my family.  & Since my husband loves to travel, that meant I have been traveling more!  So sorry I’ve been MIA for so long!  Since I last wrote I’ve been to Iceland, Utah, Scotland, London, Belgium, & DisneyWorld. “& I’m proud to say that with all these flights I remain “Faceplant free since 2023”- Thanks goes to Red Arena, where I do my horse therapy). 

So here’s a quick re-cap:

-July:Iceland was a fun family reunion, but very inaccessible (I don’t recommend going unless someone strong can carry u, & u can stand while they shower u!)

-October: We went to AMCAP (The Association of Latter-day Saint Counselors and Psychotherapists)in Utah.  It’s really for my husband, but spouses are invited & I like the intellectual Stimulation…

-December: Scotland/London/Belgium-this was an early Christmas/30th wedding anniversary for my husband & I.  It started off rocky because British Airways was totally discriminating against those with disabilities, & they destroyed my beautiful new travel wheelchair!  But I saw my childhood crush, Donny Osmond, perform in “Joseph & the Amazing Technicolor Dreamcoat” in Scotland, & in London (probably the most accessible place) I saw “Harry Potter 1 & 2” & “Phantom of the Opera” (which we saw on our honeymoon, & for my wedding gift, my husband made me a music box that plays “All I Ask of U” — & he made a “more advanced” music box for our 25th anniversary).  We took a train ride from London to Belgium for a day trip.  Europe has some really cool Christmas markets at that time of year!  It’s just really cold, & I don’t do well in the cold!  But I discovered the magic of hand warmers, & I felt invincible as long as I had a hand warmer!

-January: Then came Disney. My husband, daughter Sophie, & SIL, Davis ran a half-marathon.  The flight landing was crap & we bounced, but even with that I remain faceplant free & I even reached up & pulled down the sun visor in the Ivan we rented (1st time in 20 years!  I often try & finally did it – Go me!  Some day I’ll put a visor back up in a car! HaHa) I felt as proud as if I’d finished my own half marathon! 

Back in October, Mark asked me what my perfect day was  & asked if I wanted to go somewhere…I thought about it: Disney & London are probably the most accessible places I’ve been, I enjoy family cruises,  & I love beaches (Destin, FL is pretty & doesn’t require a long flight), but nothing allows me more freedom/independence & less stress/anxiety as staying home.  So I told him I’d stay home if I had a perfect day.  Seems crazy, but nothing appealed to me more than having as much independence as possible & as little anxiety as possible!  (Plus, most of the places I go, I don’t feel very welcome – I think because usually they aren’t accessible – even finding a bathroom is hard & I basically sit alone do much better with one-on-one).

 Mark & I have zero desire to travel right now (during our spring break), &my helper, Angie , is gone all week, so we are trying my “perfect week, where I’m home & can be more independent, feel less stress, & stay warm.  I’m having a “staycation” this week  Hahaha

One more thing.  In January, the church boundaries were re-arranged for my congregation, so I’m no longer the primary president. I now work with the 11-18 year old girls (YW/young women). It’s far less involved, so maybe I can get back to things I have stopped doing.

Speaking of the YW I work with, last week I sent this text on our YW text group, & wanted to share it today on here:

“At the end of class today I had a comment when we discussed “does Christ REALLY know how I feel?” (ie having a period & bleeding all over the place in public) But I talk slow  & am hard to understand, so I rarely share comments in class, but this comment I wanted to take the time to share, & this text group is a great place for me to share! (We missed those who couldn’t be there!)

This question (does Christ REALLY know how I feel) is something I have really struggled with, & I wanted to share what I have learned & know to be true.  On March 16 I will ”celebrate” my  21st stroke-aversary.  I know the atonement isn’t only for our sins, but also for so Christ could “succor (to aid & show relief) His people”. But how does that help him understand the past TWENTY -ONE years of my life ?  It’s not like He has ever had a 21-year-long stroke!  But He has endured the emotions I have felt in those 21 years. So, while He has never physically had a period, He does understand the feelings that come with it  (embarrassment, shame, disappointment, etc)  

The first year after my stroke was insanely hard in every way, as all I could do was blink my eyes. But as I learn to yoke myself with my Savior, my burdens are lighter & as a result I have had some years that weren’t AS hard, even though I have dealt with things that probably have been as hard as that first year, if I tried to do them on my own.”

“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.