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.

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.

You'll never walk alone

Here I am on a rehab walk at the Sepulveda Basin Wildlife Reserve, along with Joella, who came with us that day. The chairs for our picnic with Keith are in the wheelchair, which I did without on our last two walks at Sepulveda.

I've talked a lot about all the invaluable emotional support I've received from my online friends, but I haven't really gotten into the in-person support given to me by my loved ones. I've recently been reminded that not everyone with severe physical hardships is fortunate enough to receive so much understanding and support from their families. Without mine I truly couldn't have gotten where I am now.

I've only gotten hints at what my loved ones went through when I was in the coma. After all, as I've mentioned many times before, my doctors told them I had profound brain damage and that they should give up hope for my full recovery. Indeed, I was expected to die. When I awoke completely, and it was obvious that I was truly all there, the joy and relief must have been overwhelming. They had already been visiting me daily in shifts for six weeks during the coma, and that continued once I was conscious again.

I had trouble communicating due to my trach, so they often had to run interference for me with the overstretched nursing staff. Joella used to be a respiratory therapist, so her medical training often came in particularly handy. She has her own share of physical impairments, especially her back back and fibromyalgia, which cause her considerable pain. Joella often had to help pull me up in the bed, aggravating her back pain. With her arthritic hands, she detangled my hair after my showers (my long, thick, curly mane was not the kind that was ever meant to be braided). The physical strain on her must have been immense.

Joella's burden only increased when I was forced to leave the nursing home prematurely to prevent the loss of my Kaiser Permanente health insurance. I had a hard time even standing, and walking to the bathroom and back was about the limit of what I could manage.

In the morning, Keith did everything he could to set things out so Joella wouldn't have to get too many things for me, but he had to get to work. He prepared lunch and lifted anything heavy. I hated having to ask Joella to be my servant, but I had no choice. She was sometimes took care of her late husband Colin, who was disabled by heart problems and diabetes, but I doubt she ever thought she would have to be a caregiver for Keith's long-time girlfriend. As I got stronger, she had to do less and less for me, to the point where she was able to go on her usual summer visit to her other two sons and their families, which she had to skip in 2013 due to my coma. She offered to stay, but I assured her I was ready, and I was. In fact, it was good for me. Now, I sometimes bring items for her lunch to her.

Keith, of course, has had the biggest impact on my recovery from the beginning. He went on a fruitless store-to-store quest to purchase a pair of my hard-to-find size 5 shoes for the brace that was supposed to help me walk. That's the very reason I stopped shopping for shoes in stores. In the past, that meant walking to numerous stores in the mall, but this actually delayed my ability to walk at all. It must have been very frustrating for him, and his dedication touched me.

Keith visited in the morning before work, and after work, too, sacrificing sleep and meals along the way. When I was still asleep in the morning, he would leave sweet notes for me. And Keith would often drive to the nursing home on his lunch break to bring me something I needed (a trek Joella often made, as well). You can see why so many nurses told me that Keith was a keeper.

After I was home, he began pushing me up and down steep inclines in my wheelchair during our rehab walks, all the while holding my walker on the back of the wheelchair and sometimes hauling a backpack and a chair for himself, as well, so we could have a picnic while I rested. Keith was often as exhausted as I was after the walk. He's even helped me to collect urine samples for lab tests (though he didn't have to hold the specimen cup underneath me--the plastic "hat" given to me by the lab performed that function). Now that's dedication. He's needed to help me less and less as my walking has improved, but I wouldn't have reached this point without his selfless aid.

The list of thing Keith has done for my recovery, and is still doing, would fill countless blogs. A keeper, indeed. Before my illness, I knew I loved him, of course, but I didn't realize the full depth of his qualities. My love for Keith has only deepened.

People often praise my strength in facing my recovery. And it's true that a weaker person probably would've crumbled at the task. But I didn't get here alone. I was helped by the giving people I was so very fortunate to have around me. There's no way I could thank them enough.

Keith's take

Some of my Facebook friends have had negative experiences with the medical system, so my link to my last post generated a lively discussion. Keith gave his very considered opinion on why patients who can't speak aren't given writing material (he's a writer too, after all). Here it is, by permission:

My theory is that it simply isn't anyone's job to listen to the patient and they don't have the time.

Of course they care. They are people, and that is what people do. 

But they are also professionals who are paid to do a job. When a health care worker comes into a patient's room, it is to do a specific job (give a treatment, turn the patient, take a reading, etc). They need to get in, do the job, and move on to their next patient. Input from the patient isn't important to the specific job they have to do, and in fact can be a distraction. 

I have only seen ICU, DOA, and nursing homes, but it is not the job of anyone in any of those facilities to listen to the patient or to observe the patient. The nurses, CNAs, doctors, and other technicians simply don't have time to wait for every patient they see to communicate via writing. Furthermore, the worker in a room with a patient at any given time is probably not going to be able to help with a specific request. The tech taking blood can't turn a patient or get pain medicine or a bedpan, and if they have to find the person who can that will take even more time. 

So, it is easier if the patient can't communicate. Not better for the patient, but easier.

It is a problem with our system in general, but it is no individual worker's fault. They are being paid to do a job and they do it.