My Restless Leg

Restless leg

The potpourri of symptoms I’ve previously chronicled include a severely drooping foot, no leg strength from just above the knee, an ankle that constantly wants to turn sideways, and occasional cramps in my toes, the arch of my foot, and my calf. And let’s not forget balance, specifically the lack thereof. I’m not exaggerating when I say that a strong and sudden gust of wind can cause a loss of balance and an unexpected fall.

The one symptom I’ve never mentioned before, which happens to be the most annoying, is something called Restless Leg Syndrome (RLS).

Here is a quick definition: RLS causes unpleasant or uncomfortable sensations in the legs, creating an irresistible urge to move them. Symptoms commonly occur in the late afternoon or evening hours, and are often most severe at night when a person is sitting, resting, or lying in bed.  They also may occur when someone is inactive and sitting for extended periods (for example, when taking a trip by plane or watching a movie). There are a variety of sensations that generally occur within the limb that prompt the jerking movements: crawling, creeping, pulling, throbbing, aching, itching, and a feeling akin to an electric current. Research shows that people with MS are about four times more likely to have RLS than people in the general population.

In the scheme of things, my RLS isn’t a big deal. There is no pain or discomfort whatsoever that alerts me to its arrival.  Nonetheless, it’s aggravating to the extreme.

First of all, I can’t control it. Without warning, a jolt electric current surges into my lower leg, causing the toes to curl upward and the foot to lift. Sometimes it’s a quick twitch, and other times it lasts a few seconds, where the big toe is trying its damnedest to touch my shin, or the leg sticks straight out with the heel pointing forward, before it flops back to earth.

Secondly, when the twitching begins, it can occur as many as three times per minute. Do the math. It’s hard to enjoy anything when your leg acts like a flopping fish desperately trying to find its way back into the water.

I’m not self conscious about the way I walk or things of that nature, but I am about this, primarily because I think it looks bizzare. When someone parks in a handicapped space or you see someone with a cane, you expect to see them them walk differently or have a more difficult time getting about. Imagine sitting next to someone who looks perfectly healthy at work, in a movie theater, a sporting event, a wedding, or sitting in their living room over drinks, and their foot/leg begins to spasm and doesn’t stop. If you get too close, you might even get kicked.

The spasms always occur when I’ve been sitting for extended periods of time, like right now as I’m writing this piece. They can and do occur at work, but all I have to do is get up and walk around to make the twitching disappear. I don’t always do that because the spasms don’t impact my ability to do my job, but there are other times where getting up and walking around is impossible, like when I’m driving.

I have to be extremely careful when the leg starts flailing while I’m driving, because my bad leg is the right one, which controls the accelerator and brake. Try accelerating or braking  when your foot is trying to curl backwards. I’ve learned to brake with my left foot if necessary, and most of the time I can coast the few seconds during which the spasm occurs. If I’m on the highway when this happens, cruise control comes in handy. Nonetheless, my next new car is going to have to be equipped with hand controls whether I like it or not.

If I am at a public event or gathering of some kind, I don’t stay on my feet for extended periods of time, which means I’m usually sitting. In these situations I try to make sure there is some distance between me and the person I am sitting next to or across from, and do whatever I can to hide my legs. Sometimes, I’ll cross my feet to prevent the leg from protruding too far should the spasms start.

Then there is the issue of trying to fall asleep when RLS is active. In K’s recent post, she rightfully said that I don’t get enough sleep, but one of the reasons for this is that it doesn’t seem to matter what is going on with the leg when I’m dead tired. I’ll still fall asleep in five to ten minutes. Otherwise, the twitching, which occurs almost every night night, makes it hard to get comfortable.  I become restless, annoyed, and eventually wide awake. Of course, I could walk around to make it stop, but it takes more than a brief stroll for that to occur. Either way, it takes a while before sleep comes, and I get even less sleep in the process.

These are some of the reasons why I find RLS so annoying, but it is not the reason

K lamented that I do a lot of things that Shodan can and probably should do. Why? Because it gives me a sense of control over my tormentor. From my perspective, giving into MS by letting others do the work I am still capable of doing is like conceding to an enemy that wants me  to wave the white flag of surrender, which I simply refuse to do. So even though snow removal is very difficult, and I do stuff in the yard that my son could do more easily and in a fraction of the time, I find ways to compensate, which allows me to complete the task. This is all about my will being stronger than the MS, and not letting it get the best of me.

None of that works with RLS.  It’s as if the disease is taunting me. “So you think you can ignore me? You think you have control?” it whispers. “Let’s test that theory while I fuck with your leg for a little while. See how that works for you!”

I am absolutely impotent in this situation, which serves as a not so subtle reminder that I’m denying this inconvenient truth: if and when MS decides to throw the hammer down and takes control over everything I stubbornly cling to, I will be powerless to stop it.

And that is what bugs me the most.

Writing Into an Identity

Flowergirlink

Susan’s story is an inspiration. When I discovered her blog, I was immediately struck by her poetry that is beautiful and moving. While I never considered myself a huge poetry fan, I’ve long admired poets because they paint pictures and elicit emotions with an economy of words that is impressive. I was also intrigued, amazed actually, by the presumption that she was totally blind, and could craft such wonderful art. I soon learned that Susan in not completely sightless, but that that doesn’t make what she does any less impressive. I admire her perseverance and tenacity.

If you enjoy poetry, please visit https://floweringink.wordpress.com 

And if you don’t, visit the site anyway. If you’re like me you will be instantly converted.

Thank you Susan.

I discovered Steve’s blog through another blogger, and when I began to read Steve’s posts, I felt through his words a succinct determination, gentle honesty and a real desire to help others.  I find all of this incredibly admirable, and as I read more, I found his humor and strength and an atmosphere of camaraderie.  It was an incredible honor to me when he started to read my blog and then invited me to write a guest post for his.

I can’t deny I am a bit nervous to be a guest here, but more than that I am excited to have been asked.

I am a poet and a writer.  I am married to an Irishman, and we have 2 pugs and 2 cats.  We live in Hollywood, surrounded by an array of interesting characters that often appear in my poems and stories.  I also have a degenerative retinal disease called Retinitis Pigmentosa.  I am going blind.

I grappled with what to write about for this post.  RP seemed an obvious thing, but it doesn’t stand alone.  It isn’t something I hold at arms-length and look at objectively.  It doesn’t define me, but it is part of me. It has become a constant pattern in the fabric of my life, one I didn’t choose and never would have chosen, but one that is indelibly tattooed on my existence.

On the day of my diagnosis, my life changed. RP crept beneath my skin. I couldn’t deny it or shrug it off; it was here to stay and I had a choice to either let it destroy me, or to accept the reality of it and figure out how blindness was going to mesh with my life. It was to be a long and harrowing path littered with obstacles, both literal and figurative.  I felt like my identity had been shattered and I was tasked with finding the pieces and creating something new from them.  I began the journey of learning to become a blind person. Or at least that’s what I thought at the time.

The first 7 years after my diagnosis, I continued to work as a Human Resources Manager, struggling to cope with my disease, while keeping it a secret.  During those 7 years, I came home almost every day, exhausted from over use of my eyes and unable to do anything but lie on the couch, in the dark, because I was in so much pain.  At the time of my diagnosis, I had 50 degrees of peripheral vision (This diagram is a good example of the human visual field), at the end of those 7 years, I had 25 degrees; I had lost half of my remaining vision.  I decided to stop working.

At the time of my retirement (as my husband calls it), I had the grandiose idea that I was going to write full time.  From a very early age, I had a dream of being a writer.  I had always felt like a writer, even declared myself a writer, but the writing itself was inconsistent, at best. I had a few poems published in my early 20’s, but life pulled me under its wheels and my writing voice turned into a whisper. I was a writer who didn’t write. That would remain the case for some years.

When I stopped working, it became clear that I hadn’t really dealt with my RP.  I hadn’t allowed myself the time, and suddenly, I had nothing but time.  I decided I was going to write a book, that writing would be the best way to figure out how to piece together the identity of a visually impaired woman.  Day after day, I sat down at the computer and nothing happened.  I couldn’t feel my voice.  I had no idea who I was.   It was as if everything I had been before RP had gotten demolished by the looming presence of a disease I couldn’t face.

In an attempt to get motivated about the book, I started my blog.  My posts were few and very far between.  I wasn’t looking at myself from a writer’s perspective, I was looking at myself from a blind perspective. I was no longer a writer, I was a blind woman trying to write because I felt I had no purpose; I became weighed down by feeling empty and lost myself in the process. I felt like a failure and a fraud. Then, an old friend of mine made a suggestion that changed my life.  She told me to step away from the blog and go back to what first made me fall in love with writing.  I followed her advice and fell back into the arms of poetry.

I felt my voice return and my passion for language resurface.  I remembered why I had always dreamed of a writing life, why I had fallen in love with words.  I felt my pulse flow onto the page.  I was able to write about RP, to face the reality of it with what felt like a brutally beautiful honesty. I wrote about blindness.  I wrote about my family and my neighborhood and the world around me.  In the return to writing poetry, I rediscovered my passion and it made me feel braver.  I returned to the blog and started posting regularly. I found a writing community that is generous and inspiring. I started sending my poems to journals and magazines and I started getting published again.  It was a true awakening.

It turned out the journey wasn’t one of becoming a blind person, it was one of becoming myself, but I can’t deny that RP played a significant role in leading me back to writing and helping me write into an identity that had been lost.  RP isn’t something that I have and it isn’t something that has me.  Like being a writer, it is simply a part of who I am.