Wednesday, June 6, 2018

Tucson 2018

The last time we went to Tucson, it was with Skeeter (of course) and my little Winnie walker.  Four years later, I was wheelchair-bound.  With Earl, my primary caregiver, in Portland, my new village consisted of three girlfriends.  Fortunately, they were experienced veterans dealing with my various mishaps, so I was unconcerned about that.  To me, the bigger issue was Thelma's dimensions*.  Would she fit going down the hallways?  Would she fit in the bathroom?  Could I get up at night, transfer to the wheel chair. and get to the bathroom without falling on my unsuspecting friend?  Yes, Thelma maneuvered down the hallway.  No, she didn't fit in the bathroom, but waited patiently just outside for me.  Yes, I was able to transfer and go to the bathroom without falling on my friend.

Usually, when Earl and I fly, it's on a full size airplane with a gateway to the plane door.  I scoot down, we check both the scooter and wheelchair like baby strollers, I hold on to his shoulders and we walk to our seat.  Done.  But the direct flight to Tucson was on a small plane, outside at the end of the terminal, with a ramp rather than a gateway.  So much for not being obviously disabled (a misguided, but persistent fantasy).  But there are some advantages to disabled travel and my friends learned to embrace them.  Going through security is usually unpredictable, but often, the line is shorter.  People with disabilities board first, and if there is room, often upgraded.  For our flight, all four of us we were indeed upgraded to first class (yay!, free wine).  So, I scooted to the end of the parking gates, bit another humiliation bullet as they strapped me into an aisle chair and hauled me up the ramp.

The Tucson Casita
My friend's casita (pueblo–style house) has always been a great getaway place for our girls' trip. It has areas to enjoy the outdoors–something the climate in Oregon doesn't dependably allow in the Spring.  In the past, we have gone toward the end of March (a sunny, but moderate temperature).  This year, for several reasons, we went in May.  The difference?  It was freakin' hot down there!  An added activity to our daily sojourns was going from shady spot to shady spot.  We were Northwest wimps, even the one friend who loves desert heat.

Tucson at it's best
One evening, we went to the home of friends who split their time between Tucson and Central Oregon.  It was one of those Arizona evenings when it makes perfect sense to move to the desert—beautiful setting, clear skies, gentle breeze.  The house wasn't huge, but impeccably decorated and well laid out.  As we were leaving, our hostess escorted us to the car.  "How nice.  She didn't need to do that.", I thought and it was.  However, she was also on the lookout for rattlesnakes and scorpions languishing on the walkway.  Oregon was sounding better–cooler and wetter, but better.

Tucson Botanical Garden
Tohono Chul Park
We had been going to Tucson for a long time, since the start of the Iraq War. Some things had become traditions and we looked forward to them every visit.  We had to go to Tubac, the artsy shopping village about 45 miles south of Tucson, drop into the Tumacore Bar (long story), and of course, lots of margaritas and Mexican food.  The challenge was to find things to do that we hadn't done before (preferably indoors, out of the sun).  We had been to the Tucson Botanical Gardens before, but not the Tohono Chul Garden. Yeah, it was hot, but worth it.

Time Machine Museum of Miniatures
The last day came and we looked for something new–with air conditioning. Turning to the list of Top 10 Things to See in Tucson, we stumbled on some museums that sounded interesting.  Although we had been going to Tucson for awhile, the art museum at the University of Arizona had been my first foray into motorized scooting when I got stuck in the restroom**. The art museum had a special exhibit that sounded appealing so we took that in.  At the next museum, we discovered a the world of 'Miniature Craft'.  Way beyond a casual past time, Miniature Craft dates back to the 1700's and is a passion for the miniature enthusiast.  Creation of a true miniature strictly adheres to a 1 to 12 scale, must be authentic and is often handmade.  Unexpectedly fascinating.  

Rockabilly Raceway
Also on the Top Ten List was the show at Tucson's Gaslight Theatre.  Perusing on the web, we decided "Rockabilly Raceway" was either going to be fun or the tackiest show ever.  It was both and we'll likely return.  Dumb story, talented cast, good music, medium food and wine.  It may become a new tradition.

The lesson:  Always something to do in Tucson before May

*Previous post: New Wheels: The 'girls'
**Previous post: What Happens in Tucson...
Previous post: What Happens in Tucson Redux

Tuesday, May 29, 2018

Hip, hip hooray!

Earl and I had to face it.  We were in the seventyish–ish group when our parts start complaining *.  Having Ataxia for a while, I had become accustomed to dealing with 'body malfunctions'.  Not that I always take things in stride, but I usually accept a certain level of inevitability.  When Earl began having pain in his hip, it was a totally new experience to him.  As the progressive discomfort started impinging on a lifelong active lifestyle, he was open to a corrective intervention.  X–rays predictably confirmed that one hip needed replacement surgery.  Anticipated, but somewhat complicated by his caregiving responsibilities.   He was going to be temporarily out of commission and not available to me.  Of course, it is all about me.
In and out 14 hours 

Fortunately, he had surgery and went home later that day.  Jason was the designated caregiver.  Where was I?  Granted, having a disability and being wheelchair–bound made me less useful, but Earl's surgery also happened to conflict with a 'Girls Trip' to Tucson**.  I had lamely offered to cancel (he didn't buy that) and he responded that he and Jason would bravely soldier on without me (I didn't buy that)***.  We both knew that one person with limited mobility in the house at a time was enough.  So, off I went to Arizona.

The gym/rehab center
One thing I can take credit for is our house (well, not all the credit, but some)****.  All the modifications that we made to accommodate my Ataxia also made the house ideal for post operative rehabilitation.  Being on one level, hardwood floors, grab bars by the toilet, bedside rail assist made it as good as most hospitals.  The week before, the village had shoved the bed toward my side, transferred the bedside rail assist, and brought our recumbent cycle downstairs.  He was ready.  Having me out of the house was just an extra bonus.

I came home five days after surgery–just in time for rehabilitation.  We had stayed in daily FaceTime contact, but it was good to get home.  I had missed his 'aroundness'.  Earl was relatively pain free, eating and pooping well, and diligent about doing his exercises.  Life was good and he surprised everyone by not over–doing (he's prone to that).

Earl and new hip
Earl learned that there were many separate steps, prior thought and planning to bathing and dressing.  He hadn't ever needed to think about that.  I was tempted (wicked witch nature) , but managed not to say, "Really? That never occurred to me." (zip it, Tam)  I was actually some help, tying his shoe on the leg with limited flexibility.  He had fired me from helping him with the compression stocking, but once again, our 'village' came through with the coordination and upper body strength required.  Up to this point, our village had only been family.  Now friends joined in with walks, visits, food and check ins.  Now that Earl is approaching full functionality (shopping, cooking, driving, caregiving), his goal of a long bicycle ride in August entered into the feasible category.  We'll see... 

The lesson:  It takes a freakin' village.  Get it ready before the wheels fall off.

Wednesday, April 11, 2018

Up in the Night

There are so many things that make having a movement disorder annoying, but two things really stand out.  One is having to think about every single component of basic activities when I never did before.  Secondly is getting up during the night.  Having a pea–sized, rather than camel–sized bladder makes it more complicated with Ataxia.  I'm grateful to not be cognitively impaired as I awaken, requiring only a brief period of orientation to get the correct direction.

However, it's important to remember where I am.  It's either in Lake Oswego with Earl on the left side of the bed, the bathroom is to the right or in Maui where he sleeps on the right and the bathroom is to the left. But, there is one more thing to think about.  Thelma, the travel wheelchair, brakes high in the back.  Louise, the home wheelchair, brakes low in the front. Which chair awaits*? What would be the consequence of getting it wrong?  If facing the wrong direction, I could cough in Earl's face.  I don't want to even think about the other possibilities.

If I need to get up once or twice, OK.  But three times a night with the requisite thought activity is a bit of an interruption to my sleep habits. I'm fortunate to sleep inordinately well and consider that a big contributor to my overall good health.  I don't want to jeopardize anything in my favor.  So what to do?  I briefly tried to ignore the sensation and just go back to sleep.  But, I learned years ago, that the feeling never goes away, and it's best to just get up and go**.

It's hard to ignore your sleeping partner when they get up at night.  If they're awake, you're awake.  I try to be as quiet as possible, but it's mostly a futile effort.  Transferring from bed to a wheelchair in the dark, backing out while avoiding furniture, getting into the bathroom, standing and pivoting, sitting down is a veritable 'symphony' of sound.  Earl says it doesn't disturb him, but, truth be told, he's trying to be a good sport.  I mean, come on!  It's not like I'm a bull in a china shop, but neither am I Tinkerbell.

I have always resisted medications designed to treat overactive bladder/nocturia.  Not sure if it's fear of side effects, ineffectiveness or being generally averse to the big pharma marketing.  The TV commercial goes...'(as a mother rushed to the bathroom in the middle of her daughter's wedding dress fitting) "I was tired of missing out on life's moments, talked to my doctor"... blah, blah, blah'.  Spare me, please!  I just want to sleeep better.  So, what the hell.  I'm going to give oxybutynin (generic medication).  After 4 nights, I would say it is making a difference.  Twice/night as opposed to more frequently.  I’ll take it.

The lesson: At least I do get up first. That's something.

*Previous post: New Wheels: The 'girls'
**Previous post: Untoward Exits

Sunday, April 1, 2018

March On!

It's no secret that my political views lie to the left of center.  This post may well offend some more conservative friends, but it won't be the first time. 
The 'March for Our Lives' was important to me, but I was concerned about my limited mobility.  I needed Earl to get us there and he strategically parked halfway between the start and the finish.  It wasn't too far before the three of us reached the gathering multitudes and was also easy for us to return to the car at the end.

Have scooter, will march
Venturing forth in a large crowd when one has a disability and views people at waist level has its disadvantages.  In fact, it can be downright hazardous both for me and those in the crowd.  I learned in Disneyland to keep your eyes straight ahead, pay attention, and move with the crowd*.  I was relieved not to have been involved in any mishaps.  Fortunately, I had Earl and granddaughter Zoe to blaze the trail, but I did manage to score Earl's heel twice.


 As at Disneyland, children and strollers abounded.  Granted, the march organizers were teenagers, but I found myself marveling at the babies and children of all ages everywhere.  Nothing like the safety of youth to get people riled up. Parents dressed their munchkins for the cold.  Although adverse weather threatened, it neither rained nor snowed.  However, Earl and I had just returned from Maui 24 hours before and weren't yet used to the multiple clothing layers required in the Northwest.  I thought for sure that Spring would have arrived by the end of the month—but no.

Signs & songs & grannies, oh my!
Probably all the demonstrations featured some pretty creative signs.   But the Portland march had some great ones and that turned out to be a fascinating part of the morning as well.

The lesson:  I wasn't the only mobility impaired person there.  As with everything, activism is more work and takes a village, but it's doable. 

*Previous post: I'm Going to Disneyland!

Previous post: Getting Out the Disabled Vote

Saturday, February 3, 2018

Christmas in excess

Disclaimer:  I was working on this blog in Maui when the false missile alert occurred.  That seemed more timely, so I put this one on hold.  This posting is a bit unseasonably late.
Portland's outdoor Christmas Tree
 I enjoy the holidays and have learned to embrace the 'less is more' philosophy of last year*—until this year.  Being raised Catholic, our Thai student had plenty of Christmas seasons, but no country does over the top celebrating like the US, especially the commercial, excessive, and secular parts.  We decided to share the whole experience.

The Jingle Bell Walk
Special events are part of this season.  Even I participated in both, one traditional and one new.  Every year, Earl organizes a Jingle Bell walk.  They walk from downtown hotel to hotel looking at (and judging) the holiday decorations. This year since the weather was good, Skeeter, me, and the granddaughters joined in.  We were concerned that the size of our group would discourage hotel staff from allowing us in–but they welcomed our large group in and showed off their Christmas decorations with pride.  It was fun and we finished at the downtown bakery for coffee, chocolate, and treats.

Christmas Lights from car
Viewing Christmas light displays sounds great, but it's often cold and wet in Portland in December.  Kids often don't enjoy that, no matter what adults may think.  This year we viewed the lights at the Portland International Raceway from the warmth of our car.  Uncharacteristically, there was no traffic, no rain, no ice on the roads, and no tears.

Every year, we come up with a non-traditional menu but I was running out of new ideas.  We had done Italian, Asian, Greek, Middle Eastern and were beginning to recycle through the international cuisines. I had two requirements for a fun Christmas dinner—good food and a rowdy house.  The solution came from both family and friends.  Our daughter Heidi and her husband Michael suggested New Orleans Creole/Southern food and we happen to have friends who were lifelong New Orleanians.  So launched the Mardi Gras Christmas—over the top, colorful, and fun.
Mardis Gras Invitation

Pam, the head dΓ©cor elf, enlisted the help of a granddaughter**.  We were the perfect team—one general, one soldier, and me. It was even more perfect once I left to take my nap and got out of the way.

I always fessed up to being a big tree dictator.***  But even our Thai student was surprised at how big the tree was and how fast we bought it.  Niece Jill, the tree elf**, dutifully put over 2300 lights on (what, too much?).  Even Earl got into the 'elf' mode and created his own themed tree topper.  A star?–no, an angel?–no.  It's a Mardi Gras themed top hat with birds!
Our over the top tree

Christmas Eve
Our daughter in law and son hosted a Christmas eve pajama party.  Having no themed pajamas, Earl and I had to order some in order to fit in.  The grandaughters provided entertainment and Porter provided extra 'sloppy dog' hugs.

Christmas dinner was quite the happening.  With 22 people in the house and three tables, it was loud and fun. There was no sign of a holiday minimalist*.  In spite of the icy, inclement weather that cancelled many Christmas celebrations, only one guest couldn't make it. Good thing or we would have had a lot of New Orleans Creole/Southern food left over. 
Christmas Dinner

The lesson:  It was certainly an excessive Christmas celebration and fun as well.

*Previous post: Minimizing the Holidays
**Previous post: The Holiday Elves
***Previous post: The Holiday Dictator

Sunday, January 14, 2018

Always Something New in Paradise*

Just when I thought we could do nothing new in Maui, the nuclear missile alert happened.  It's always something.

At 8:00 am, Earl’s out for his beach walk and waiting for the start of the Maui High School canoe races.

I’m in the condo when I get the first alert. At the same time, with canoes about to go in the water, all activity was halted.  As a wheelchair-bound person, I was concerned, but not panicked.  I mean, really?
First alert 8:04 1/13/2018

To Earl
T: Interesting alert. Where would we go for shelter from a nuclear missile?  More to the point, does it matter?

E: Not sure. Turn on the news

T: The news says if you’re outdoors, go indoors.  If you’re indoors, stay away from the windows.  They said that they will let people know when the alert is over.

E: Do they say anything about when the canoe races are going to start? (He was just yanking my chain. He really came back to the condo)
8:34 Oops. Nevermind 😳
My first clue that there was no cause for concern was when I tried to get further safety instructions and all I could find on the TV were ball games. The 'oops' came 35 minutes later.  The second clue was the total lack of sirens.  The Hawaiian islands test the warning sirens monthly.  The system is sound and residents take it seriously.

From our niece, currently on Oahu, taking care of her school aged twin cousins and her 80-year-old aunt with Alzheimer's.  That's when I began to appreciate the variance in response to an alert depending on one's age, responsibilities and location.  Pearl Harbor and Hickam Field are on the island of Oahu. 
Wow, classic scene in Hawaii during a missle alert, watching the paddlers pause. We’re all ok. As I woke up & rushed my little cousins to the tub (less windows), Aunty Susie sat at the table eating her breakfast & sipping her coffee with no worry 😊 while I scurried around to confirm the news. Odd—no communication from the governor or mayor over cell phones or TV.
We started hearing from friends and family on the mainland.  The threat over, most were curious about the response.  It varied between trying to get a flight out of the islands (are you kidding me?) to turning over in bed and going back to sleep.  One friend called Earl and asked if we just hugged one another.  Another friend, old enough to remember the 'duck and cover' days, texted...

The lesson: Wouldn’t you hate to be the person who accidentally pushed the button and sent the false alert? 😜

*Previous post: Nothing New in Paradise

Monday, November 13, 2017

The High School Reunion

The Lake Theater and Cafe
For the last year, I had been part of a 10–member committee planning our 50th High school Reunion.  Lincoln High in the 60s was the 'downtown' high school and was also the newest, being the 2nd iteration.  Fifty+ years later it's falling, like us, into disrepair and is slated for replacement (unlike us).

Lincoln & committee c. 1967
Although I had physical disabilities, I had only minor cognitive decline, related to being 68 rather than my ataxia.  The benefit was that I still remembered how to design and use a database—very beneficial with the data collection tasks.

Accumulating alumni information over the course of a year insured that I would recognize most classmates.  It also gave me an opportunity to catch up in advance of the reunion.  The rest of the committee members didn't have that advantage.  Incorporating the reunion planning committee as a new group into my 'village'* was an unexpected benefit. It was more fun than planning a wedding–fewer details, I didn't have to buy an outfit, and, best of all, it wasn't my party πŸ‘. 

Great weather, good view
Breaking with the common custom of having a sit–down dinner, the committee had chosen a casual, low key venue.  We selected a local theater cafe with an outdoor deck, good food, good accessibility and alcohol. Not wanting to have a big, formal do–dah, the event dress code required only shirt and shoes. After all, this wasn't the Academy Awards.  It seemed like people dressed comfortably (no glitz in sight), and that was the goal.  Scheduling the event for the last weekend of September was gutsy, but the unpredictable northwest weather cooperated that evening and the next day.  No rain, not too cold, not too hot–just right...πŸ˜….

The turnout
I wasn't the only mobility–impaired person, and had many years of getting over some of my vanity.  I was ready for this humiliation bullet.  Many people had their own life lemons with which to deal, and others to whom another's lemon just didn't matter.  I did, however, get my nails done and my gray roots colored.  There is a limit to how much vanity one can ignore**. πŸ˜‰

A 50th high school reunion can a momentous event to some, a non–event to others.  In the course of 50 years, everyone has life's ups and downs with which to deal.  Overall, the turnout was great, but it did take a little coaxing of fence-sitting alums who weren't sure that they wanted to attend.  The committee members just wanted people to come by any means possible.  We found an engaging article about ' reunion reticence' written in the New York Times and published it on our Facebook Page.  Excerpted from it:
"On the surface, high school reunions are a chance to reminisce, reconnect and discover who has been posting deceptively flattering photos on Facebook. But the collision of past and present is also a time of self-reflection, measuring who you are against what you wished for yourself and what you think your peers expected of you.

For some, reunions offer vindication. For others, they’re a dreaded reckoning. For many they really are just a chance to catch up. But what most everyone has in common is some level of anxiety, as the insecurities of the past get thrust into the present."
As retirement nears, people’s lives start to resemble each other’s once again. There’s less drinking and more talking, with conversations focusing on “remember when.” People find value in being around others they knew when they were younger because it makes them feel younger.  The 50th reunion is often the most well-attended. There’s a sense that this could be the last time you see these people. Plus, people go because they are able to attend. Like the 40th, nostalgia is strong.
High-school reunion anxiety: Facing the old you

Reconnecting and eating
The Sunday picnic the next day afforded more opportunity for reconnecting with former classmates, eating potluck contributions and leftover food from the evening before.  I had hoped that we had planned an enjoyable weekend for classmates, but was struck by the number of spouses who also seemed to be having a good time. They may have been dragged there and just were being good sports, but I didn't see any indication of it.  Between the two events, about a third of graduates came and (I think), were glad they did. 

The lesson: With Earl pushing, Thelma and I spent the weekend back in time. We were definitely a more fun and interesting group at 68 than we were at 18.

*Previous post:  Where's My Village?
**Previous post:  Scooting While Vain