My fate is in my hands

Yes, that's my hand and my keychain Magic 8-Ball.

I have written about this before, but I think that my atheism has helped drive my recovery.

Sure, my stubbornness has something to do with it--don't tell me I can't walk!--but knowing there's no one out there who's going to make things better makes me do it for myself.

I realize that believers find praying to God comforting. And they keep waiting and waiting for God to pick up the message.

I guess he screens his calls.

A famous large study of heart patients showed that patients who knew they were being prayed for actually did worse than those who weren't prayed for.

But like people relying on Magic 8-Balls, believers keep shaking that ball, waiting for it to say something other than...

ANSWER HAZY TRY AGAIN

They've all heard the canard that God helps those who help themselves--I wonder why that is?--but they still wait for the great big genie in the sky to make it better for them.

CONCENTRATE AND TRY AGAIN

But since I don't believe there's anyone up there, I know I have to rely on myself. My recovery won't happen on it's own.

IT IS CERTAIN

And there's a comfort in knowing that I have my fate in my own hands. The faithful are always excusing life's misfortunes by saying God works in mysterious ways.

BETTER NOT TELL YOU NOW

Well,  I don't have some fickle deity deciding to give me yet another bout of Legionnaires' disease because he woke up on the wrong side of the cloud.

MY ANSWER IS NO

I slowly weaned off prednisone early last year , so I'm no longer as immune-suppressed as I was. (My methotrexate also has immunosuppressive properties, but it's not coincidental that I haven't had a bout of pneumonia since I went off prednisone in late January of 2015.)

IT IS CERTAIN

I'm continuing to exercise on the stationary bike six times a week and hike once a week, not to mention my physical therapy exercises. I keep escalating the difficulty of the hikes. Indeed, the hike this Monday at Rocky Peak Park was the hardest yet (post and Tumblr link are forthcoming).

When I was a toddler, I had a shoestring with some large beads. I would chew on the ends of the lace, so they were rather frayed. I couldn't get one of the beads on, and I was getting red in the face with frustration. My mother took it from me. She was about to string it on for me when I grabbed it back, and said, "Me do it!"

I'm still like that when I feel frustrated. But when I see myself climbing new heights, I can say,

"Me did it!"

Will I recover the rest of my physical abilities without recourse to a higher power?

OUTLOOK GOOD

Part Two: Finally, I have squat

In Part One, I've fallen and I can't get up!, which is part of my Scenes from... series I presented a vignette that played out on countless evenings before my dermatomyositis was diagnosed and treated with prednisone. It was the prednisone that lowered my immunity so severely that I eventually came down with Legionnaires' disease, triggering a cascade of serious symptoms, including sepsis, strokes, and my six-week coma. But that's another story.

Here is Part Two:

August 25th will be the second anniversary of Coma Day, the day I awoke from my coma. It's a bit of a cliche to say I had to relearn how to walk, but that's exactly what happened. I've certainly gone much further than my doctors' gloomy predictions at the time. But then, isn't hard to be better than "hopeless."

My body's healing mechanisms have played a major part in that recovery. Thanks, body! But it hasn't gotten there on its own. I've had to exercise that body intensely, and put it through difficult and often bizarre physical therapy exercises to get there. At first, the milestones came fast and thick. It seemed that every time my occupational therapist in the nursing home recommended an assistive device, by the time my loved ones had acquired it, I didn't need it anymore. We still have that swivel spoon with my name written on it. This was mostly my body's doing. Thanks again.

As my recovery progressed, though, physical therapy began playing a larger and larger role. Therapy and body worked together to help me walk again. But as my rehab has progressed, the recovery milestones have had a tendency to sneak up on me. These advances have been mainly won by exercise. This was the case for my new ability to take consecutive steps on stairs, as I detailed here: Every step I take, every move I make. That was an ability I lost even before the strokes and coma, since my dermatomyositis damaged my proximal muscles along my trunk, including the muscles in my leg, buttocks, and thighs (as I mentioned in Part One).

And here's where we get to the bit I set up by portraying my battles with squatting, which was one of the first things to go when I started to develop the symptoms of DM. Squatting was once something I did without thinking, to pet a cat, shovel the litter box, pet another cat, scoop a turd, clean up that furball, and, oy, here's the rest of it. Do they really have to walk while they're puking? Hey, let's see how many different surfaces I can cover!

Eventually, it got so hard for me to clean furballs that the other members of the family had to take over. (Even Karena, who feels like barfing herself when she cleans up puke.) But I fought to retain the litter shovelling chore because of Joella's bad back. She also has a bad tendency to bend over at the waist. Whereas I trained myself to squat to spare my own bad back.  Until I did that, I kept throwing out my back while shovelling the litterbox. After I trained myself to stop bending at the waist, my lower back pain, not coincidentally, improved. It became such an ingrained habit that I kept forgetting that I couldn't do it anymore. And then someone would have to come and pull me up from the ground. Sometimes that person was Joella, risking throwing her back out--the exact opposite of my intentions in continuing the litter shovelling. Though my muscles improved after my DM was diagnosed and I was put on prednisone, I never regained my ability to squat, then stand up again without aid.

A few days ago, however, I was reaching down for something I had dropped, when plopped into a crouch, just as I would when I had newly lost that ability. Crap! Now, what am I going to do. I looked around for something leverage myself up with. But to my astonishment, I was able to stand up without using my hands. I did it again to make sure it wasn't a fluke. Yup, the squat is back!

I can't squat long enough clean up puke or shovel litterboxes in our multi-cat, multi-litterbox family yet. But now it's only a matter of time before I will be able to. And when that finally occurs, cat messes will have never smelled sweeter! ;-)

Scenes from (Before) My Coma Recovery: I've fallen and I can't get up!

This is the first installment of a two-part post. First up: a vignette from when my dermatomyositis was in its active phase, at a time when I thought it was possible I had DM, but before it was diagnosed. The second one will be about an ability I haven't had since that harrowing time, which I'm finally starting to get back thanks to my rehab exercises.

A little background: DM damages the proximal muscles: arms, shoulders, hips, buttocks, and legs. I had begun using a plastic stool to help me push up from the ground when shovelling our multi-cat household's litter boxes. Soon, that too became next to impossible.

I was kneeling in front of the litter box, my right leg cramping against my chest. The left leg didn't hurt that much...at least until I tried to unpin it from the ground. I pulled the stool in front of me and pushed with all my might. Nothing. I tried again, leaning forward as I attempted to push myself high enough for my left leg to open up under me. But the leg seemed to be glued to the floor.

"Move, goddamn it! Move!" I said as I began to cry. A lightning bolt of pain shot from my hips. I pushed again. This time, I slipped, my leg plopping back down painfully as the stool shot to my left. I yelled out an obscenity.

The stream of obscenities continued as I stretched my arm out, scrambling to reach the stool's leg. Eventually, I managed to edge the stool close enough to grab it.

I squared the stool in front of me again. But my left leg would still not move. I tried again and again. Still nothing. It wasn't long before I began to panic.

"Help me! Please help me! I can't get up!" I yelled, or rather tried to. My ragged voice barely escaped my throat [another DM symptom]. But everyone was asleep, and even if my voice had been normal, the game room was so far away from the bedrooms. It was hopeless.

"Help!" I continued, anyway, as I sobbed. I tried yet again. This time I managed to get my left foot under my me, but I flopped backward, hard onto my butt. I had landed a few feet away from our large, three-legged cat scratching post. Each post had a different kind of scratching surface. I inchwormed myself with my legs toward the tree-limb post, which was the one closest to me. When I was finally close enough, I grabbed the post with both arms and slowly pulled myself toward the steep step that lead to the dining room. It was only a couple of feet, but it felt like a mile.

Not one of our cats--they're only grumpy when you're petting one of the other cats.

If I could make it to the step, maybe I could edge my butt up that way. One, two, three...ugh. I slipped down again. I tried again. Plop. It took several tries before I manage to get one cheek on the step. For a couple of minutes the edge of the step was wedged in the crack of my butt, before I finally managed to turn the other cheek, so to speak. I pushed up with my hands on the edge of the step and propelled myself forward.

My feet unfurled, and I was standing once again. Instead of feeling relieved, though, I started crying again, this time out of fear of what was happening to me. It was times like this that the voice in my head would whisper, "You probably have DM." 

Soon, the voice would be proven right.

Old (nursing) home week

Actually, it was only a day, okay, a half-hour or so at the nursing home. But returning to Country Villa Sheraton even for that long unleashed a flood of memories.

I climbed up the steps that I had once struggled to walk past on my first outside walk and entered the lobby. As I waited for the receptionist to get off the phone, I sat down and watched the open therapy room door. I didn't see any familiar faces, and I worried that I had waited too long for this trek.

I had returned to the nursing home to try to record the names of the people who had most prominently figured into my recovery, excluding the ones I still remembered. But I'm terrible with names, and at the time when I would've still remembered them, when I first got back home, I was too busy struggling to get up from the couch and walk to the bathroom to think about a future memoir. Indeed, it wasn't until I could ease up somewhat on my grueling physical therapy exercises that I was able to begin devoting some of my time and energy into writing about my experiences.

The receptionist told me to go wherever I needed to ask questions, so I walked past the area where I had taken my first short indoor walk toward the receptionist's desk and entered the so-called gym. I again saw no one I remembered until I passed the door and looked over to the end of a long table against the side wall. Yes! Apparently, there had recently been a large turnover, but at least Karen was still there. She remembered many of the names I sought, one of which was in fact hers.

She showed me the collage of my walking pictures that we had included with the gift basket of food Keith and I had delivered on Christmas Eve in 2013. It showed my progress from coma to nursing home to our early rehab walks. Someone had posted it inside an open cupboard. I said that I hoped it provided inspiration to some of the patients. Karen said she had just been looking at the collage.

After I had gotten most of the names I needed and thanked Karen, I headed out to see if I could find any nurses I remembered, as well. But I returned soon after when I realized I wanted to know the name of a certain Alzheimer's patient I had often seen in the gym. Karen couldn't remember her, but I said that was okay because I had already referred to her one of my essays ("Voiceless") without using her name, and I could do the same in my memoir.

This sweet woman was particularly memorable because of the small baby dolls she doted on as if they were real. Angel--thank you for that name, Karen!--had given the woman her first doll because he thought it would help her to feel more engaged. It was more successful than he had even imagined. He and Arin--again, thanks!--would incorporate "her babies" into her physical therapy sessions, tying them to her walker and treating them like they were real. [Well, okay, if they had been real babies, tying them to a moving walker with stretchy exercise bands would've been frowned upon.] I've often wondered about her since then. I always thought she must have been a very kind and nurturing woman before Alzheimer's began stealing away her mind.

I never did find a nurse I remembered, though Joella, who was sitting in the waiting room, had. But I did see that woman with Alzheimer's. For the first time, I saw her without a doll in her hands to stroke. The tender, happy expression had drained from her face. She muttered something business-sounding about forms to herself as I passed. I didn't ask her what her name was because I wasn't sure if she even remembered it. Even worse, that could've upset her badly.

I couldn't help wondering if the loss of Angel--who had moved on from the nursing home--and the dolls he gave her had contributed to that marked change in her demeanor. From an overheard conversation between Angel and Arin, I know that she had a son who was concerned about her treatment by the physical therapists. He thought they didn't treat her sensitively enough. On the contrary, I saw nothing but nurturing and kindness from the assistant physical therapists regarding her care.

So, while she clearly has a loving son, but he's not able to be with her as much as the therapists are. Though of course Alzheimer's is a degenerative disease, I can't help wondering if the loss of those dolls and the dedicated physical therapists who had encouraged her might have had a detrimental effect. They're relatively low paid, and you can't blame them for moving on. But it still makes me feel like buying some baby dolls and giving them to her...assuming it's not too late. But, really, no one can do anything for her now.