Keep Me in Your Heart

With thanks to my friend Mark.

Advertisements

I Love This

Made me feel happy.

“5 Years Time” by Noah and the Whale.


Not Much Cheer This Year

Gee, I’d sure love to write something uplifting during the holidays. Not likely this year.

On the other hand, I am managing to remember that I am not yet bed-bound, not yet so disabled that I can’t walk at all — I need the power chair only for distances of more than a block or two. I can still breathe on my own, and my heart still beats (even if it does so with a nasty, though harmless, arrhythmia that can scare the hell out of me). Pain, while constant, is unbearable only for spurts. And I seem to be getting used to it (good thing since I seem to be allergic to most pain medications).

For this holiday season, this dark time of the cycle of our planet, I guess I’m giving up the façade of acting happy, OK, or pretending that I’m getting by. At least here in my blog. I am (some would say finally) taking stock of what I have lost. Here’s a bit of what goes through my mind.

If I had not become infected when I was so young (30-40 years ago is one guess, probably in my teens), perhaps I would have been more resilient when family, lovers, and friends failed or betrayed me. I would have been less devastated, more outgoing, perhaps made better decisions. I believe I would have been able to bounce back more fully than I did when horrible things happened.

But I didn’t bounce back. And as the years wore on, bacterial infections started taking my life piece by piece. Continuing with that all important ability to cope with disaster.

I actually showed considerable ability to cope early on. But I believe that neuroborreliosis (and the other tick born illnesses I’ve got) slowed — and then halted — my ability to rebound. It wore me away over time.

If I had not become infected, I’d have a body of artwork by now. I know I’d have an art studio and be producing (and selling) wearable art. I would be spinning and knitting and felting. Weaving. Sketching. Creating polymer clay creations. I would be designing and sewing clothing. Pursuing all those creative passions that give me so much joy.

My career with them was halting in the first place (due to illness, resiliency, etc.). Now, because I can no longer use my hands all that much, I’ve given away or sold most of my art supplies. The rest are in storage, which is silly. It would cost less to get rid of them and rebuy them (if I ever got well again) than to pay for storage each month. But I don’t have the energy to go through them. So there they sit.

I would have been writing seriously for decades. I would have published articles regularly. I might have written a book. Or two.

I wouldn’t have sold my piano ten years ago, when my hands stopped working. I would still be playing classical and jazz and who knows what. My heart still breaks when I remember I no longer have a piano. And that if I had one, I couldn’t play.

And this fall, I found out that I can no longer sing. I took a vocal performance class, and found that my body is too frail. Singing, I remembered with a shock, is physically demanding. Don’t know what I was thinking. But it’s still a shock.

And let’s not forget my inability to work. Generate income. Bring home the bacon. Since becoming disabled, my income has been cut down to about a quarter of what I used to make. And the cost of insurance takes about a quarter of that. If I were able to work, well, let’s just say things would be a whole lot more financially secure. And I’d have the joy of going out into the world, which I miss terribly.

I would have friends. I know what it feels like to have had them. At the moment, I know what it means to be very, very lonely. Which is infuriating because I know how to make friends, good friends. But one must be well to do that work. And it is work. It requires creativity, commitment, and reciprocity. Energy. None of which I’ve got.

Finally, worst of all, is my inability to volunteer (a great way to make good friends, by the way). For a while, when I became so sick that I could not work any more, I dreamed of being able to volunteer in meaningful programs locally with all my new “free time”. What a dope!

First of all, I was (am) in such denial that I didn’t (don’t) realize that I’d become (I am) one of the “less fortunate” who need volunteers to help them out.

Second, a chronically ill person has no free time Or energy. It all goes toward treatment management, symptom management, recording symptoms and medications, doctor’s appointments, and everyone’s personal favorite, sparring with one’s medical insurance company. All other normal chores (paying bills, cleaning house, doing laundry, cooking, marketing, family engagements), fall to the bottom of the priority pile. They often don’t get done at all. (Thank god I have a partner who pays bills, or I’d be in jail.)

There. It’s not a complete list, and I reserve the right to add to it later. It’s just what’s on my mind at the moment.

%d bloggers like this: