Wednesday, October 28, 2015

On This Day


Two years ago, yesterday, according to the On This Day Facebook app, Keith shared the above photo of me on my four-hour tour of our house during my second furlough, as they called it, from the nursing home, Country Villa Sheraton. Furlough, as if I were getting out of prison. Country Villa was far from the Sheraton, but I was receiving desperately needed physical therapy. One of my most difficult exercises was to stand. That was it. I would just barely struggle to stand up, over and over again. "That's ten," Denise, the occupational therapist, would say. I would rest a bit, then she would say, "Let's do another set." It was like musical chairs without the music...or the fun. The prize was that I would be able to get up from a chair without help. It was utterly exhausting for me--that's how weak I was. Only a month before I could barely lift my head from the pillow.

I have many more readers than the last time I wrote about this, but this previous post makes a good primer about what I went through as I struggled to walk: A Journey of a Thousand Miles. As it details, another physical therapist confided to me that the other therapists thought John Silva, the main physical therapist helping me to relearn how to walk, was rushing my walking.
John Silva helping me on my first walk outside the nursing home.
But if John hadn't put me on such an aggressive program, I wouldn't have even been able to leave the nursing home when I did, and I would've lost my Kaiser Permanente health insurance. I had to be out by November or my coverage would've gone bye-bye. As woefully unprepared as I was to return home, I needed that coverage, considering that I still had a serious autoimmune disease, dermatomyositis. I could've continued with non-Kaiser Medi-Cal coverage, but my quality of healthcare would've suffered without Kaiser's superior care. And, we would've had to pay the nursing home out of our own pockets because it's likely that Medi-Cal wouldn't have paid to keep me there either. A Kaiser social worker who worked at the nursing home confided to me that in a few months time, what Kaiser was doing to me would be illegal. That was because the unfairly maligned Affordable Care Act--better known as Obamacare--would be taking effect then.

During that first furlough, I slipped and hit my head on the toilet because I wasn't used to a four-wheeled rollator. Don't worry, I wasn't hurt; I have a hard head. I'm lucky I didn't crack the toilet. John had instructed me to sign out a walker to be used during my furlough, but he was off for the weekend. A tightly wound physical therapist who disagreed with John's methods refused to allow me to sign out a walker (though this was a common practice). Without John there, I was at her mercy. So Keith went to a large local drugstore to buy one for me, but they only had four-wheeled rollators. The kind of walker I had been using had only two wheels, with rubber stopper ends on the front legs. I later learned that four wheels aren't recommended for people with little physical control. But Keith didn't know that either. If that therapist had allowed me to take a walker with me, I wouldn't have hit my head. As I said, I was okay, but that was a lawsuit waiting to happen.
After I returned home, I tricked out the walker with a tote and a cupholder.

The second home visit went smoother because Keith had ordered a two-wheeled walker from Amazon, which I continued to use until I was strong enough to handle the rollator. To the right is a photo taken on one of my first rehab walks using the walker Keith bought. And below is a photo taken on our first rehab walk at Vasquez Rocks, when I was finally strong enough for the four-wheeled rollator. The rollator opened up areas like Vasquez Rocks that would've been too difficult to manage using the walker, which created a lot of drag, even with the ski glides we put on it.
I wasn't walking fast; it's really windy at Vasquez Rocks.
This Friday, we will be carving pumpkins for Halloween. We'll also be holding a belated birthday celebration for Joella, Keith's mom. During her birthday, she was away on her annual summer pilgrimage to visit her other two sons and their families. Friday will also be the second anniversary of my return home. My homecoming was on the day before Halloween. I did not, as our custom, carve a pumpkin. A knife in my feeble hands was not advisable. I didn't want to return to the hospital so soon after leaving the nursing home. I was still recovering from MRSA pneumonia and I was experiencing painful spasms in my right foot that were eased somewhat by vibrating slippers. Thus, instead of my usual jester costume, I wore a warm sweater coat and matching vibrating slippers, since wearing only one would've looked weird. Yes, it was Halloween, but it wasn't that kind of fun-weird. I was dressed as a sickly person who had just gotten out of the nursing home after a six-week coma. I think the bandage on my tracheostomy site was a nice touch. The gloves were to hide the open sores on my hands, which had not yet healed, a legacy of my dermatomyositis. Maybe I should've used my hands as part of a zombie costume....
Handing out candy and toys to the trick-or-treaters with Joella the day after my return.
Last year, I was strong enough to carve two pumpkins and I wore the jester costume.

Last Halloween with Joella and her dog Sadie. Traditionally, I hand out the toys and Joella gives out the candy. Sadie handles the sniffing.
This year, I will have fuller hair, but more importantly, I won't need to use a cane. I only use it now when I'm out to provide stability. Everyone needs a bit of stability in their lives. I would've benefited immensely from a few extra weeks in the nursing home, but it was certainly nice to be home.

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Coma Girl

Coma Girl

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In July of 2013, I fell into a six-week coma and nearly died. When I awoke from the coma, I could barely lift my head. It has been a hard road to recovery. The doctors advised my loved ones to give up all hope for my full recovery, but while they were shining lights in my eyes to gauge my level of consciousness, I was telling them grumpily to leave me alone because I was trying to get back to sleep...in my coma-dream. I was experiencing covert cognition, and the coma-dream was my version of a near-death experience. I'm a skeptic, so I saw surreal images instead of spirits or dead loved ones. According to my research, as many as one in five people with consciousness disorders have covert cognition.

Not a miracle recovery, but a miracle of modern medicine

In 2013 I fell into a six-week coma and nearly died after I contracted legionella. The Legionnaire's disease was in turn triggered by immunosuppression caused by the prednisone I was taking for my rare autoimmune disease, dermatomyositis.

I suffered a series of strokes on both sides of my brain when the sepsis caused my blood pressure to plummet. I fell into a deep coma. My kidneys and lungs began to fail, as my body was began dying one organ at a time. My doctors told my loved ones to give up hope for my full recovery. They expected me to die, and even if I somehow lived, I would remain a vegetable or at best left so hopelessly brain-damaged that I would never be same. But unbeknownst to them, while they were shining lights in my eyes and shaking their heads, I was telling them in my coma-dream--my secular version of a near-death experience--to leave me alone because I was trying to get back to sleep. I was experiencing what is known as covert cognition, the subject of my Skeptical Inquirer article "Covert Cognition: My So-Called Near-Death Experience," which appeared in their July/August issue.

But it wasn't a miracle--despite what so many continue to believe--that I recovered so fully. I owe my life not to God, but the miracles of modern medicine, as well as the nature of the watershed-area brain damage I suffered, as I detailed in my article and in this blog.