SfMCR: An imperfect storm

Eating dinner while still doing the sitting exercise.

My painful experience in a double-wide wheelchair was traumatic, to say the least. When a physical therapist showed up in my room the next day to see if I was ready for my exercises, I insisted they find me a small wheelchair. They dug around trying to find a child-sized one, which they couldn't locate, but I really just wanted to make sure it wasn't a large one.

After the combined physical and occupational therapy session, I was wheeled back into my room  to proceed to the sitting portion of my training. As I explained in my last Scenes from My Coma Recovery, sitting as long as possible was an important part of my rehab. Sitting sounds like simple lounging--prolonged sitting is actually considered harmful for most people--but I had been horizontal for six weeks. Without support my body flopped over like a wet noodle.

I always made sure they put the leg rests back on the wheelchair after my sessions in the "gym" because it quickly became painful to sit without my feet being supported. The supports were removed to allow me to do the exercises, and they didn't always remember to replace them after I was finished.

Once I was back in my room, I realized they had forgotten again and pointed that out to the assistant physical therapist who had wheeled me to my room. He went back to the gym and retrieved them for me. I thanked him and he left.

It wasn't long before I realized that my feet didn't quite reach the footrests. They must've given me the footrests from a larger wheelchair, I reasoned. I pressed the call button. Once the nurse reached Angel, a pudgy, good-humored, physical therapist I liked, he came and adjusted the rests a bit. But my feet still didn't reach.

He tried again, but said, "They're on the shortest setting already."

"But my feet still don't rea," I said, running out of air at the end, as usual. "They fit before."

"I'm sorry," said Angel. "They can't be adjusted anymore."

"They must be the wrong ones."

Sigh. "I'll go look."

When Angel came back, my feet still didn't reach.

"There aren't any others in the gym," he told me.

I noticed a pair of supports in the area of the room where spare equipment was stored. But when he retrieved them, they actually turned out to be extra large.

I was starting to feel worked up, my trauma from the day before still fresh on my mind.  "What am I going to do?" I began crying. "It's going to hurt."

"I'm really sorry, but there's nothing I can do. Why don't I get you a pillow?"

I shook my head violently, remembering how the pillows the day before only made things worse. "It's going to hurt."

By this time, Joella was there on her regular visiting shift. She checked the settings herself. "They're on the shortest settings now," she confirmed.

"They fit before," I repeated. "Please try again."

Angel fiddled with the footrests again. This went around and around, until Joella got so exasperated that she threw her cell phone on the hard tile floor, breaking it.

About this time, you're thinking I was being unreasonable. And you would be right. But you have to remember that I was on a high dose of prednisone, which plays havoc with your emotions. Add that to my trauma the day before and the stress of my recovery.

I eventually relented and agreed to try a pillow. I really didn't want to be making such a fuss. But my legs soon started hurting because my left foot still didn't quite reach. I shifted my position. And shifted again. And yet again. The pillow fell off the rests.

I pressed the call button once more. A CNA eventually appeared. She put a thicker pillow under my feet, but that proved to be too thick. Now the left foot fit, but my right felt jammed. Still, I decided to give it a try. It wasn't long before my legs started to hurt again.

I had the idea stuck in my mind that the original rests were still hiding in the gym somewhere. Another search, another goose egg.

This time, a different physical therapist showed up. I liked him, too, and I was embarrassed to be putting up such a fuss.

"But it fit before."

"You were probably sat too far back in the chair." He adjusted my back pillow, which was a thin pillow brought to me from our home. It was quite comfortable. Indeed, I continued to use it with the wheelchair after I left the nursing home, and I'm sitting against it now. But because it wasn't designed for wheelchairs, it had a tendency to shift.

The new position was a bit better, yet my legs still didn't quite sit flat on the rests. But he helped shift my position in the seat (I was so weak that I could only help slightly).

Ah, problem solved.

The moral of the story? Being in a nursing home is stressful. Compounded with pain, trauma, and helplessness, with a heaping dose of a medicine that is notorious for messing with your emotions, it makes for a volatile situation.

My elbow is resting on the thin pillow from home.

SfMCR: A pain in the ass...literally

Sitting in a normal-size wheelchair.

Part of my physical therapy in the nursing home involved sitting. That's it. Well, it was sitting in a wheelchair. I wasn't given a seat cushion at first because they didn't have enough to go around. (John Silva eventually scrounged one up for me.) Without a pad, there's nothing but a vinyl sling below your butt.

So what, you may be thinking, director's chairs are fairly comfortable. Try sitting on one not for an hour or two, but all day. I wasn't yet strong enough to sit up that long, but I also had general pain that I attribute to my body getting used to being animate after my awakening. Residual muscle pain from my dermatomyositis might've contributed to it, as well. And then there was the bedsore just below the base of my spine.

But considering that my body wasn't up to sitting for that long, it wasn't that bad.

When an assistant physical therapist came into my room to take me to physical therapy and wheeled
in a double-wide wheelchair, obviously meant for the morbidly obese, I was merely amused. After all, my weight had dwindled under my liquid diet during my coma and many weeks afterward. I looked like a concentration camp survivor, my bones sticking out of my skin, creating pressure points.

I had already gained a few pounds by the time of my home visit in October, but you can see how skinny I had become as I attempted to play the wonderful Dorsey Williams dulcimer Keith had given me for our anniversary.

I'm really tiny to begin with. I'm only five foot tall, and small-boned to boot. What, they couldn't find a dump truck?

A few people we passed in the hall joked about the size of the wheelchair, which must've looked especially large with someone so tiny in it. Once in the "gym," as the physical therapy room was called, I realize that I was sliding awkwardly to one side of the wheelchair. I shifted my weight to try and find a comfortable position. Then I shifted again. And again.

After my physical and occupational therapy session ended, I was wheeled back into my room to perform the second part of my therapy--the sitting. The goal was to sit as long as I could to retrain my body to remain upright and get used to sitting in a chair.

The physical therapist is supposed to make sure you have the call button within reach before leaving. But they kept forgetting, and this time was no exception.

It wasn't long before my hips and butt started to ache. Then the shooting pains began, followed by pulsing waves. When I couldn't take it any longer, I started to pound on my wheelchair for someone to help me. No one came. As the pain continued to increase, I began to weep.

"I need some help," I kept saying, but this was after my speaking valve had been carelessly trashed, so what came out was barely a whisper.

Finally, someone passed in the hall and I called to her, pounding on the arm of my wheelchair to catch her attention.

She was a nurse. "What's the problem?" she asked.

"The wheelchair is too big for m." I ran out of air, as usual. "It hurts." I sniffled. "It hurts!"

"I'm sorry you're in pain. Where does it hurt?"

I pointed to my right hip and my butt.

"What would you like me to do to help you?"

"Give me another wheelchai." I took a breath. "Or put me back in be."

"I can't do that. I'll send for a CNA."

"Thank you." She put a box of Kleenex in my lap before she left.

I daubed my nose as I waited. And I waited some more, as lightning bolts of pain shot through my right hip.

When the CNA finally arrived, she propped a pillow under me. I was really determined to regain my lost abilities, so I didn't want to give up on my wheelchair training. It was worth a try.

But I continued to list in the cavernous depths of that enormous wheelchair. What's worse, the CNA also forgot to give me the call button. The tears started flowing again, I banged on the wheelchair, calling as best I could, as my panic increased.

When someone finally came, she tried yet another arrangement of pillows. At least this time, the CNA remembered to give me the call button, which before long I was forced to press.

"What is it now?" the nurse asked.

I reached for a Kleenex to wipe my running nose. "Please put me back in be..." Breath. "It hurts."

"I'll go get someone to help you."

Not again!

Another looooong wait followed.

But when a CNA finally arrived, she wasn't trained in transferring patience and she had to get someone to help.

I thanked them profusely after they slid me into bed by lifting the sheet underneath me. Finally, I was in bed, exhausted, still in pain, and emotionally wrung out.

The next day, I insisted the assistant physical therapist give me a small wheelchair. Still, a painful drama ensued when they left me in the wheelchair yet again.

But that's another story.

Springing through the Arboretum

Climbing over the radiating low trunk of a white karee.

Tumblrs: Los Angeles County Arboretum

Sunday, we walked the expansive LA Arboretum, which was approaching its spring splendor. As we meandered through its exotic flora, the air was filled with the cat-like mating calls of the garden's peacocks, a legacy of Lucky Baldwin's menagerie.

While the Arboretum is no longer as physically challenging for me as it once was, it more than makes up for it in distance. For the first couple of years, the only way I could see the Arboretum's far-flung gardens was for Keith to push me much of the way in the wheelchair.

That gave us both of a workout, since on the way back, Keith had push me uphill. Now, I have to walk that loooong incline myself (and, at any rate, I've finally returned the wheelchair). And there are certainly other challenges within the Arboretum.

I climbed numerous staircases, not only the steep one beside the waterfall, but also these uneven steps repurposed from broken concrete, And let's not forget my half-vaulting over the snaking, low growing trunk of the white karee (see above).

Still, at the Arboretum we have to make up the relative lack of rough hiking, as I indicated, by walking a good distance. In this case, it was 2.34 miles.

Keith was certainly glad that I was trudging up the hill on my own two feet.

Last year, on my birthday, climbing the staircase in the relocated late-Nineteenth Century train depot. I had to half-pull myself up the steep stairs. It was much easier when I climbed them earlier this year.

Look, Ma, only one hand!

But even that first labored trip up the staircase was a major improvement over our first visit to the Arboretum, in January of 2014.

Along for the ride in my wheelchair, in front of the falls.

My own devices

Finally sending away my wheelchair last week did more than free up trunk space. It's also revived memories of the path I've traveled since my awakening and the now-unneeded mobility tools that helped me get there, however briefly.

I haven't needed the wheelchair for some time, and I had no real attachment to it. In fact, the only reason I hadn't made the call to have it picked up was it didn't really matter to me one way or the other. Plus, my ADHD makes me an inveterate procrastinator.

But now that it's gone, I've been casting my eye on the other mobility paraphernalia that we can't return because we purchased them ourselves.

I'm using the walker as parallel bars for my physical therapy exercises, so it still serves a recovery-related purpose. But two of the rollators are simply taking up space. They're awaiting burial in the garage, alongside with the light rollator I thought would be easier to hook on the back of the wheelchair, but was actually harder. We'll eventually give most of them to Goodwill.

One is currently serving as a particularly bulky table for clutter.

Perhaps one of our moms will be able to use the three-wheeled rollator I liked so much. Indeed, my mom has been thinking of buying a similar model. The Winniewalker was the best of the bunch by far.

And then there are the various canes. Lately, I've taken to leaving the Hurrycane behind, though I may still use sometimes it when I think I'll be in a crowd.

Indeed, the history of my recovery is paved with physically enabling devices that I've grown past almost by the time they've arrived. I may never get a chance to use the fancy folding canes Keith gave me as gifts. By the time I don't require the extra stability the Hurrycane provides, I won't need a cane at all.

My stroke-caused vertigo is now the sole reason I might need a cane. That's why I still feel more comfortable with it when I could be jostled and set off balance in a crowd.

And then there are all the accessories we purchased to make those devices more convenient or comfortable. There are several cup holders and totes for the wheelchair, walker, and rollators. The inflatable seat cushion for the wheelchair was insanely expensive, and it was hundreds of bucks cheaper than the top of the line models. We'd like to find a charity that will give it directly to a handicapped person instead of simply selling it to someone who will probably just use it as a regular seat cushion. It's called a Roho. I looked through a catalog my physical therapist in the nursing home lent me. They can run ten times as expensive as the one we chose. Kaiser would only provide a cheap and very thin inflatable seat pad that looked like a waffle. At any rate, since these pads are so obscenely expensive, we're hoping that it will go to a poor veteran or someone like that.

Wheelchairs don't seem to be built for people to sit comfortably in for long periods of time!

You can see the thinness of the pad as it peeks out under my butt. The back pillow is my own pillow. In this case, its thinness was good, allowing it to conform to my back. I'm sitting against it now.

Perhaps we should hold a special garage sale for the mobility-challenged. The only problem is, how to get them here?

And while we're at it, there is the swivel spoon the nursing home occupational therapist
recommended, which I barely needed by the time it arrived.

Or what about the resistance bands? Or the special totes for the walkers and rollators? Or the all-terrain attachment for the cane Kaiser issued to me before Keith gave me the Hurrycane? Or the...

Goodbye to all that

At least someone will be sorry to see the wheelchair go. Notice the caked mud on the wheels.

I should've done it ages ago...at least since 2015, and perhaps as early as 2014. The wheelchair was
simply taking up space in Keith's trunk. The only thing that kept me from making the call to have the wheelchair picked up was the motivation to get around to finding the phone number.

I finally did that yesterday. And today, FedEx came by to carry the wheelchair away for good.

Good riddance to my earlier dependance!

A photo taken on our first rehab walk. Keith wheeled me between the viewing stations so I could walk the few yards to the outlets using the walker hooked onto the handles of the wheelchair.

Walking with Joella's dog where coyotes pupped

Tumblrs: Conejo Valley Botanic Garden

The last time we went to the Conejo Valley Botanic Garden, in with Joella and her Australian terrier Sadie, in June, 2015, they were barred from the garden because coyotes had been spotted in the garden with their pups.

Luckily, there's a nice community park right outside the botanic garden. We eventually left them to rest while we walked through the botanic garden. Still, the highlight of the day was our picnic together, when we watched a family of juvenile squirrel frolicking and poking in and out of passageways under the concrete of a drainage ditch like Whack-a-Moles.

That was our second visit. The first was only the second time I had used my hiking sticks to climb stairs without rails--and these were much longer flights than those had been. Stairs have gotten so old hat for us now that Keith often doesn't even bother to take pictures of me climbing them. Sunday, while Joella walked up the ramp to the garden, I took the stairs.

That visit was also the first time that we left my wheelchair behind at a new garden while I was using the hiking sticks. I guess you could call it a leap of faith that I could do without it.

And now I've left the wheelchair behind for good.