When I moved to Sacramento in the late 1990s we emailed now and then and Lee-Lee came for a visit when I moved into a new house a few years later.  She was my first visitor in this house—I didn’t even have much furniture at that time but her visit helped me feel at home here.

I am very honored by Lee-Lee’s goal of raising money for the MS Society by doing a MS bike ride.  She mentions me on her web site.  If you are interested in donating money to the MS cause, please take a look at her page.

Lee-Lee’s biking for MS link

I Can Dance

When I imagine the author of this memoir dancing, I see East Coast Swing.  She’s doing a complicated air-borne feat defying gravity at an amazing pace, hitting the beats perfectly. 

Laurie grew up with a disability that progresses (one of the forms of Muscular Dystrophy), but that never seemed to keep her from enjoying life, and living as she wanted.  She grew up as opportunities came along for disabled people with the right attitudes.  I’m about a decade older than Laurie and there were no disabled students in my schools.  Without elevators, ramps, etc. it would have been impossible of course.  But without people like Laurie pushing for mainstreaming in schools, it wouldn’t have ever happened.

In this extremely candid book, you’ll learn about all aspects of Laurie’s life.  She’s frank about needing help with every bodily function.  She had to get help in ways most of us will never have to deal with and she had to do so at an age when common sense and personal boundaries weren’t yet well established.   There were some difficult consequences.  But, somehow Laurie remains upbeat and keeps moving forward, like a dancer who briefly misses a beat but goes on to continue the dance gracefully.

Laurie has accomplished much.  After reading this book, I’m eager to see what’s next!

It was Friday the 13th and I had my adapted Aquatics Class at 11:00.  It was a beautiful October day and because the water in the pool was heated, it was a perfect experience.

After class as I pulled out of the parking space, I gave a quick thought to stopping on the way home at the nice drive through bakery and treating myself to lunch.  But, I decided, since I was wearing only my wet bathing suit and a light jacket, to go straight home instead.

I carefully negotiated a path past the speed bumps and meandering oblivious students in the parking lot on the outskirts of the campus.  At one point a speed bump loomed and just beyond it a car was waiting to turn into my lane.  I paused just before the speed bump, to let him go ahead of me, and my van stalled.  I put the vehicle in park and turned the key.  Nothing happened after the various icons alighted.  I opened the windows and turned down the radio but the van wouldn’t start.  I figured the engine was flooded so I decided to wait a few minutes.  That wasn’t what a popular decision with the students waiting behind me to escape from campus and start their weekend.  After a few minutes cars started driving around me and giving me looks of exasperation or disgust.  One or two people slowed down and ask if I needed help.  I finally asked one guy to ask the campus police to help me, if he spotted one. He said he would go looking for one. A few minutes later an older policeman arrived. 

My seat was wet from my bathing suit, and I mentioned that to him as he had me move into the passenger seat and he slid into the driver’s seat so he could start the car.  He tried all the things I had.  Another policeman came over and looked under the hood.  They decided my van should be moved a few feet away, to be less of an impediment to traffic.  One guy pushed, while the other steered.  They suggested I call AAA for a tow.  First though I called the company I bought my converted van from and asked their advice.  The mechanic there said to alert AAA to the fact that because it was a converted van and therefore extra low, a flatbed truck would be needed. 

That made me feel even worse.  I was starting to feel worried about getting home.  It was too bad that I had on the wet bathing suit, and that I needed a restroom.  Because of where my van was located, there was no room for the ramp to descend so I could leave the van, and the nearest building was about two-hundred yards away.  The AAA truck and driver arrived.  Before anything else could happen I had to ask their help to get to a bathroom.

The AAA driver and two policemen gallantly, and manually, lifted my electric wheelchair (which weighs a couple hundred pounds) out of the van.  Then I had to sort of crouch down on the floor and, with their help, fling myself into the wheelchair.  I headed for the nearest building which turned out to be the engineering building with a disabled bathroom in plain sight!  What a relief.

When I returned the AAA tow driver was on the phone arranging a ride home for me.  

Embarrassingly, he had thought of calling Paratransit and I hadn’t.  But, I’ll be the first to admit that I wasn’t thinking very well.  Actually, the rule is you are supposed to arrange a ride three days in advance, so it never occurred to me that Paratransit would be flexible enough to help out in a crisis.  Thankfully I was wrong.  Within five minutes a Paratransit bus drove up and stopped.

I live about eight miles from campus, but I was lucky to get a direct ride home.  When I arrived it dawned on me that the AAA driver had all my keys.  Thank goodness my secret key was still in place in the back yard, so I wasn’t locked out of my house.

When I tried to tip the Paratransit driver, who was my true hero, he said, “No, you’ve had a very bad day.”

This happened a few years ago when I was still driving, but I learned a valuable lesson.  AAA will tow your vehicle, but it won’t give you a ride home.  If you or your passenger won’t be able to take a conventional ride home you may want to have a different towing insurance such as ADA (www.adaautoclub.com). 

ADA rescued me recently when my van broke down thirty miles from home.  Not only did they tow my van but also arranged for a special cab that could transport me, my friend, and my powerchair. 

He and his date approached.  We made our introductions as needed.  I didn’t know his date and he didn’t know anyone with me except for Mike.

We tried various kinds of small talk.  I said I thought he’d be part of the Occupy Oakland march to the Port.  He was astonishingly inarticulate.  Not as I remember the old days.

He and his date were seated a couple rows behind us and at the opposite end of the row, so I could catch a glimpse from time to time at his reactions to the play.  Afterwards, waiting for everyone else to clear the room, he passed in front of me.  His date was in the lead and had disappeared.  He seemed unable to move forward, like his shoes were suddenly sticking to chewing gum.  It was dawning on both of us that our season tickets would bring us together on a regular basis.  I tried to be funny, “Hey, Are you stalking me?”  Instead of a laugh (I thought it was hilarious), he stammered and I had to reassure him that I was only joking.  After all, in my current state no one could possibly be stalking me—I had thought that pretty obvious.  All my attempts at levity had fallen down, exactly as I would if it came to standing. 

At last he left.  He dissolved into the crowd beyond us, where I assume, his date was standing impatiently.

It wasn’t until I was strapped in my vehicle ready to head home, that I was reminded that we had rescheduled our tickets—it was not our regular season ticket night.  Everyone around me sighed with relief.  But he wouldn’t know that!

That’s the drama when you write a memoir and the antagonist turns up at the theater.

It’s dangerous and frustrating to get the procedural response to a crisis. When you depend on a mechanical devise like a power chair and it fails you have a crisis not an inconvenience. And yet, when this has happened to me, I have been met with the slowest most frustrating response from those who I must depend on for help: namely, The National Seating & Mobility Company and Kaiser Permanente’s Department of Durable Medical Equipment. Those are the outfits I as a member of Kaiser must use to get mobility equipment and thereafter to have the equipment repaired or replaced when it fails.

Kaiser chooses the equipment—I don’t have a say, and yet I’m liable for the 20% co-pay. Kaiser chose an expensive power chair for me—now that I have to spend all my waking time in one a ridiculously expensive model was selected. But it turns out that after five months the joy stick on my new chair stopped working: the chair would not move. The entire joy stick unit had to be replaced (and it took weeks since National Seating & Mobility never thought to keep those crucial but flakey parts in stock). They wouldn’t even order the part without credit card authorization from me for the 20% co-pay. Since the chair was only five months old I fell into the warranty period that time. Now one year later, the same problem is occurring with the new joy stick unit. Again, both Kaiser and National Seating and Mobility have responded with bureaucratic double talk while I sit motionless. Believe it or not, National Seating & Mobility claims my warranty is up and I owe 20% of the cost to replace the defective part, less than one year old.

I know if the managers of the departments responsible put themselves in my place for twenty minutes their response would be different (spare parts on hand, a repair person sent with a loaner if necessary, more reliable equipment to start with). Meanwhile I sit like a plant, unable to move.

What would you do in my place?

We assembled in the Shoreline Inn, which is right on the beach, The town had a few restaurants within walking distance of our rooms where dogs are allowed inside if they behave quietly. Outside throughout town are bowls of fresh water for thirsty pooches that don’t make the cut. Finding a good place to eat while handling five dogs was unexpectedly easy.

The sun was shinning strong enough to give me a sun burn when I read on the balcony during the first day. At night my dad, my brother and I sat outside, drank Zinfandel from a nearby winery, and discussed the visible stars and planets. That evening would have made the whole trip worthwhile.

But, there was more. The owner of the motel asked if I knew about the ‘surf/beach’ wheelchair. No. I couldn’t imagine what she meant. The town has two that they will loan out. Each chair is like a giant stroller made with PVC sticks, plastic and huge pontoon wheels. My brother pushed me several hundred yards along the sandy beach, letting me dip my toes in the surf and peer into tidal pools. We spotted a young sea otter getting harassed by two seagulls. The dogs were ecstatic even by doggy standards.

Being next to the ocean was great; being able to get down to the water was something I frankly thought I’d never be able to do again.

The sun was out in a cloudless sky. It was seventy degrees. We left before the tsunami.