Scooter Saga

Since our next trip to Maui was planned for New Year's, I thought this was a good year to try a lowkey holiday.  For an over–the–top Christmas dictator like me, this was no small deal.*  Fortunately for our meager approach to the seasonal spirit, some neighbors have bypassed decorations for trips to a warmer clime, so we were following a trend.   Although I do love the season, the idea of dismantling everything quickly, although others do most of the work, just didn't seem reasonable. Under the guise of not wanting to disappoint the grandchildren, I asked for their input as to good ideas for downsizing.  I have to confess to some personal resistance to scaling back, but I was up for it. My minimizing proposal #1: No outdoor decorating Grandchild response: But, you have to have outdoor decorating My minimizing proposal #2: No Christmas village this year Grandchild response: But, you have to have your Christmas village My minimizing proposal #3: No tree Grandchil

Like everything else, voting when you have a disability takes more effort, affecting every aspect.  However, I figure if people braved beatings, prison, and forced feedings for the vote, I can quit whining, figure it out, and just do it.       In all fairness, there are many special accommodations to facilitate voting for people with disabilities.  Oregon's mail-in election ballot makes it as easy as possible, but there is always something to deal with. Issue :  Discussion is limited by my speech impairment.  Solution : Patient listeners.  I'm still opinionated, but slower and slurrier. Issue : Filling out a ballot requires some hand eye coordination–certainly more than I have. Solution : I make a dot on my choice, and Earl fills in the box. Issue :  The outer envelope requires my signature.  The only one on record was an old legible signature.  Solution :  I had to send a copy of my new illegible signature to the election board.  Didn't even know they checked.

As we neared going to Maui for nearly a month, I had some concerns. We had been going for ten years and I was worried that we'd become stuck in our routines and run out of things to do*.  Ah, the arrogance of a first world problem!  Earl could hardly wait for the chance to bike more in a warm climate.  Having a disability, I do less and do different things.  While I'm used to that and perfectly content with daily solitude, no longer driving ended our custom of Earl biking somewhere and me meeting him in the car*. From sea level to 10,000 feet We had friends coming to visit and were looking forward to their visits.  That pretty much solved my concerns.  Firstly, there's always something new to do.  Secondly, it's enjoyable to share familiar places with people who have never had that experience.  Thirdly, we had a friend to facilitate Earl's plan to bike up the Haleakela crater–his latest 'bucket list' adventure**.  I knew the way, she drove..and st

Some may view this life task as morbid.  For me (and consequently, Earl) it's just housekeeping and organization.  Spoiler alert: We're all going to die sometime.  I figured that if I can discuss depression*, leaky bladders** and suicide***, I can certainly talk about end – of – life issues.  I appreciate that, to some people, such decisions are personal and private.  But, that never stopped me from blogging before. Earl and I wanted to minimize the hassles falling to a surviving spouse or children at a difficult time. Nothing would be worse than to have them wondering, "What would mom and dad want?"  Instead, our children encouraged us (or rather me) to stop blabbing about it already.  POLSTs everywhere... To that end, Earl and I updated our wills, trusts,  durable powers of attorney, and Oregon's POLST ( P hysician's O rders for L ife– S ustaining T reatment) .   The POLST forms needed to be signed by our healthcare provider and entered i

Government buildings at night Disclaimer: I wanted to avoid having the blog sound like a travelogue.  But after rereading the posting* about the last reunion, it was clear that ship sailed long ago.  I figured "Oh well..." Victoria, BC was the choice for the family reunion this time.  It was a great location,  unusually good weather (a challenge in the Pacific Northwest and Vancouver Island) with a touch of international travel.  At least Canada required a passport.  The week beginning the US National Political Conventions turned out to be a good time to be out of the country.  Canadians are too polite to say "What are you people doing down there?" Disabled travel is a challenge under the best of circumstances, but a bit more complicated when ferries and customs are involved.  As we learned on our trips to Disneyland and Utah**, there are so many disabled travelers that cities and tourist venues are used to it and tend to be very accommodating.  All

One of the challenging things about having four different grandchildren at different ages and interests is having four different grandchildren at different ages and interests.  It was easier when they were younger.  Although evenly spaced by two or three years, their interests seemed more similar and predictable.  Now—not so much. Grandparenting little ones I remember my mom being a terrific, engaged grandmother to our children when they were very young.  But as Heidi and Jason began to become individual people with their own ideas about what was fun, she didn't know what in the hell to do.  Being outlandish by nature, Ada redeemed herself as they got older, reclaiming her craziness and reconnected with her 'grown' grandchildren.  Their memories of her focus on the goofy Grandma.  My father, Lanny, was happy being Santa (the helper) to them.  Life lesson... It's hard enough as a grandparent to stay connected with children as they mature.*  But having li

The ironic thing about having a progressive, neurologic disability is that I often find myself wanting to do things I never did before.  For some reason, I want to play the piano or any stringed instrument.  My hands look as though they were made to play an instrument.  The problems—no prior interest, no musical aptitude, and an ongoing loss of manual dexterity.  Go figure.  Fortunately, I have full function of my hands and strength, but definitely lack the control and fine motor precision I used to have.  I blogged about it four years ago, but I viewed the bigger deficit to be more visual than manual*.  Hand tremor isn't an issue most of the time, but hand–eye coordination is. I wish I could find the humor in it, but I can't always.  Lack of coordination is often the first and most noticeable sign of ataxia, but it can feel like clumsiness.  I sometimes find it hard to take it in stride.  It's worse if I try harder and will often avoid struggling in front of

I know I just blogged about technology's role in helping with disability, but our digital doorbell is a bit different and deserved its own place in my world.  Sue me. The ring, my new BFF First of all, our nephew ordered and installed it at his house.  It was nice not to be the early adopter this time.  Secondly, it does help me as a person with disabilities and limited mobility to feel safer in responding (or not) to the door. Thirdly, installing it by our front door, required some simple tools.  What else was different from my more recently acquired 'gadgets'?  A total absence of ridicule and laughter. *  Must be the tool time. I can choose to answer and open the door in the usual way when someone's there.  But it's often too much effort to get out of a wheelchair and stand to reach the peephole.  So when the old doorbell rang, I would often opt to not answer it or take a leap of faith that there wasn't a magazine salesp erson, non-profit solicit

I never thought I'd be 'that kind of person', but I am.  Early technology adopter can be a nicer term than junkie ...what ever .  I've made no apologies for loving my smart phone and have modified some persistent anti-social habits (I'm more likely to silence my customized phone sounds).  Still my 'tech gadgets' have helped me cope with the progressing deficits that accompany my ataxia.  Now, they enable me to be rude and distracted as well as disabled. Apple watch I had considered the wearable smart watch attractive, but redundant, unnecessary, and the start of a 'slippery slope'.  As I thought more about it however, the concept of unnecessary never stopped me before and I started down that slope a long time ago.  In an effort to justify a change in attitude, I considered the ways a smart watch would enhance safety for a person with disabilities.  I wouldn't be tethered to my phone, checking whenever a text or email came in.  I

Whenever we're in town, Earl and I have a standing play date on Thursdays with our granddaughters, Zoe and Lexi.  We had picked them up at school and Lexi struck up a conversation as we headed home. "Grandma," announced Lexi (7) proudly.  "I made a portrait of you." "Really?  I can't wait to see it!"  I replied, wondering if she had perfected the stick figure depictions typical of her age group.  How would she handle my limited mobility?  My aging?  Children are so unashamedly honest* and candid.  We had already had the discussion about why my hands looked so old.  But perhaps she had forgotten.  I was actually looking forward to seeing her visual impressions. Grandma?  Seriously? Earl and I took them back to their house, where Elizabeth and Jason were preparing dinner for all of us.  Lexi disappeared into her bedroom to fetch the aforementioned portrait.  When she presented it, I found myself looking at a 'sticker' picture

Years ago, I was at a professional reception with Earl.  A man was there using open cuff/arm crutches and persisted standing, when he clearly was fatigued and needed to sit down. I wondered about that, but now I get it.  He wanted to be part of the conversation.  I accepted very early on that it's an able–bodied world.  But I needed to appreciate and adapt to the 'uprightness' of it as well. From the time I started using Skeeter, I learned another lesson about the nature of being disabled.  In many social settings, a mobility–impaired person is below eye/conversation level, either in a wheelchair or a motorized scooter.  Since I no longer use a walker, I am perpetually at belly button level.*  That often means looking up in order to feel part of the action. Have stool, will perch If there is a bar stool, I'll climb up on it by any means possible.   No matter how awkward I look or how long it takes, it puts me at conversation level with everyone else.   I even