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.

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.