Thursday, May 14, 2015

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.

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Coma Girl

Coma Girl

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.