Thursday, June 4, 2015

Living with loss

Writing responses to my FOTMD friends in the nursing home. There were countless typos in my posts because it was so hard for me to hold the stylus at first.

When you are a pet owner, you know that they will inevitably break your heart by dying. You will always feel a pang of loss when you think of them, and it never gets any easier, no matter how many pets you lose. But that doesn't stop you from getting a new pet to fill that missing place in your heart. You know that the love you will give and the affection you will receive far outweighs the unavoidable pain at the end.

It's okay; that was just a metaphor for life. This is not a sappy homage to a lost pet, so put down that Kleenex!  

Living means learning to accept loss. Love affairs end; parents die. Some people crumble, but most soldier on. I've talked about how my resilience has aided in my recovery before. It has helped to deal with my lost abilities and the periodic setbacks along the way.

My first loss was of course my ability to walk. I guess that one wasn't hard to accept because I didn't have much choice in the matter. Feeling sorry for myself wouldn't have helped me to walk, obviously, so all I could do was try as hard as I could in my physical therapy.

I had been suffering from loss of equilibrium since I awoke from the coma. Since I couldn't walk, it was most apparent in the tilt-a-while sensation I felt when I was turned over in bed to prevent bedsores. When I finally started walking, it felt like mal debarquement syndrome--a extended bout of vertigo triggered by boat or plane travel--which I had been experiencing in Sicily, probably triggered by the twisty-turny roads when we stayed on Mt. Etna. My past bouts of mal debarquement had lasted months, so I wasn't that concerned about it. But after I got out of the nursing home and was able to see a neurologist, she told me that my vertigo was actually caused by stroke damage. This was a kind of second loss, since I had previously thought that I hadn't suffered any damage from the strokes. Though my vertigo has improved--from healing and also balance exercises--I still suffer from lack of balance. My neurologist thinks it will eventually go away completely, however.

My next loss came as I was preparing to return home on a furlough to work out any kinks in coping with my extremely limited mobility. Keith was forced to tell me that my cat Klaatu had died a few months before. Sorry, I did say this wasn't going to be about dead pets, but this is only a few paragraphs, and I promise it won't be sappy! He hadn't told me because I had enough to deal with trying to relearn how to walk or even sit unsupported.

Klaatu died suddenly, perhaps of a heart attack, so at least she didn't suffer. She always had an intense case of separation anxiety, so I had been eager to get back home to reassure her that I hadn't abandoned her, after leaving her for a full month on our trip to Sicily. Now she would never know. I couldn't stop crying about it. Sniff. Where is that Kleenex? Sorry again--I swear that's the last time! Of course, I knew that she wouldn't have understood that I couldn't help leaving home again after only a few days, but at least I would've been there for her once more. Keith told me that I paid a lot of attention to her in those few days home. I can't remember that time well because I became mentally altered as I developed sepsis. It was the sepsis that caused the strokes which led to my six-week coma.

Next came the hair loss due to the acute respiratory distress syndrome I suffered during the coma, along with the continual braiding and rebraided in the nursing home. I previous chronicled this sad tale in this blog. Though my hair is still fairly short, it's now back to its unnaturally thick glory. I decided not to grow it long again because I like not having to spend hours futzing with it to keep my hair from looking like a fright wig.

My most recent loss happened when the owner of Friends of the Mountain Dulcimer banned me from the website. FOTMD was the place where my friends had been lending me their support and prayers throughout my recovery. The whole story of why she banned me would take too long to go into here. This is the Reader's Digest version: Strumelia, as the owner calls herself, was at one point one of the people offering me support. Perhaps she eventually got tired of the length of my recovery. Apparently, she began to feel that I was trying to hijack threads to talk about my illness, as if that would even be a goal for me. This stemmed from a conversation that started with a friend referring to her rheumatoid arthritis in a video meant to raise awareness of lupus. I mentioned my own autoimmune disease. Though my coma and other related subjects were discussed, the conversation also drifted into depression and other hidden illness. Strumelia forbade from discussing my illnesses at all after that, which I found offensive. This is who I am now. Would she have banned me from mentioning that I'm Jewish? I said at the time that the whole kerfluffle stemmed from a colossal series of misunderstandings. I thought things were simmering down before she suddenly banned me.

I posted about this in a couple of dulcimer groups on Facebook, since that was the most efficient way to inform my Facebook dulcimer friends. I spent the rest of the day fielding IMs. I was flooded with support, not only from my friends, but many strangers, as well. This helped tremendously in dealing with my sense of loss. It felt like a death when Strumelia banned me. What's more, all my emails pertaining to my coma and the early days of my dermatomyositis vanished when she chose the nuclear option. I needed them for my memoir. An era of my life has not only passed, it was obliterated. Fortunately, I still have the memories, as well as the two threads where I received all that wonderfully kind support, which I had previously copied. I will soon be posting the first thread in this blog, which among other things chronicled my first steps in the nursing home. The threads were the precursor to this blog.

As in all my other losses, I will survive this, too. Just like a beloved pet, FOTMD has left a hole in my heart, but I will always love my FOTMD friends.

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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.