The Secret of Swimmers

In the pool this morning, I took time to chat with a swimming friend.

This woman has been gentle, kind, supportive and encouraging to me for the past year I have been swimming at the YMCA. She was remarking to me today about the “progress” I’ve made in the time we’ve known each other (I appreciated her choice of the word “progress.” So much better than “better.”)

Coincidentally, her children trained under my brother’s old swim coach. She is also an excellent swimmer who is at the pool as much as I am.

So, we were talking about my “progress.” I thanked her for being my friend and sticking by me through this past year, for being kind to me while I was at rock bottom. “I had some really dark days,” I said.

She replied, “Really dark days happen to the best of us. But that is why we have friends, and it’s why we come to the pool. It’s the secret of swimmers: there is a reason why we go under.”

She’s right. Sometimes, swimming is the best thing to do when you feel like you are drowning in worry and pain.

On How I Look: Part 2

When I am reticent, or change the subject, if you try to tell me how “fabulous” I look, please know: my reaction is not a humble ruse, feigning humility due to some antiquated social construct prescribing female demureness.

I am not being humble. I am frustrated by the ever-amplifying dissonance between the way you say I look and the unabating physical pain I continue to be in.

Your reaction to my appearance bores me. Uncontrite, I am not ashamed to openly roll my eyes, turn my back, and walk (er, hobble) away if the best topic for discussion that you can think of is how “great” I “look.”

I have already said most of this to you. Yet, still, you don’t seem to fully understand: I am not trying to “look good.” I am trying to reduce the amount and severity of my pain because, no matter how hard I try, this beautiful body of mine is betraying me.

I will break it down more simply; I will be even more blunt.

I know I have a “killer” body. I know I am lean and muscular. I know that my outward appearance seems to defy the passage of time. I know you are probably jealous (if you are a woman). I know you are probably turned on (if you are into women).

Of course I know. I’ve had decades of people telling me all about my terrific body: ballet teachers, boyfriends, bosses, random coworkers at vending or copy machines, construction workers on the street, men on trains, friends, and enemies. My body has been the subject of love, inspiration, lust, envy, and yes, even attack.

Of course I have a nice body. I was a serious ballet dancer for three decades. When I wasn’t dancing, I was hiking, swimming, playing, riding my bike 100s of miles. You say I was “lucky” to be born with a small frame. I say that I have cared for, respected, and protected my body my entire life (that is, by the way, my “secret” that you continually ask me about).

Of course I look good. Seemingly, all I do is work on my body. Virtually every moment of every wakeful hour of every day since my accident has been spent trying to convince my leg to function again, spent fighting this incurable CRPS bullshit that has consumed my life for over three years. I usually swim more than 10 miles per week; I ride my bike on its trainer as much as my leg will allow; countless exercises every day to strengthen my core and the deep muscles supporting my spine. So, yes, of course, I look “amazing” in a bikini. And oh, you betcha, my “ass” would be “smokin'” in a pair of jeans, that is if my leg would tolerate denim against its skin.

But, the truth is I am not achieving the sustained results that I desperately want. I keep working, without paying attention to my appearance because how I look does not matter.  I go days, sometimes weeks, without looking in a mirror.

I don’t care what I look like. Neither should you.

 

How Hard I Try

I’m holding on to many things passed
To anything that’s gonna change my memories back
I’m holding on to everyone good
To everything that’s ever been the way that it should
I’m holding on to things you said
Before you forgot what this love really meant to you
The words that I sent to you, never got into you

No matter how hard I try, try
No matter how hard I try, try
No matter how hard I try, try
No matter how hard I try
No matter how hard I try, try, try
No matter how hard I try

I’m holding on to many things passed
To anything that’s gonna change my memories back
I’m holding on to everyone good
To everything that’s ever been the way that it should
I’m holding on to things you said
Before you forgot what this love really meant to you
The words that I sent to you, never got into you

No matter how hard I try, try
No matter how hard I try, try
No matter how hard I try, try
No matter how hard I try
No matter how hard I try, try, try
No matter how hard I try
Hard I try
Hard I try
How hard I try
How hard I try

Tropical Storm

I woke up this morning almost in tears…

Everything hurts. My right leg feels like it is going to explode. My left leg (!!!!) is having very strong surges in the fibula. My low back feels like a chainsaw is cutting me in half. My head feels like my brain fluid was replaced by sulfuric acid.

What the hell?!?!

Oh. There is a tropical storm coming.

Jesus.

This Feeling

You see, the concise version of my story is that I had an accident. I hurt my ankle and this injury precipitated CRPS. I am now I am disabled.

Right.

But what is (sometimes intensionally) left out of the story is that I used to be a regular normal person in society. I was definitely more active than today’s norm, but normal in most ways. And then I had my accident.

My life as I knew it ended.

I lost my ability to work. You don’t realize how much of your*self* is tied to your ability to work. Or at least I didn’t. I took it for granted that I would always be able to sustain myself. I didn’t know that if, for some freak reason, I wasn’t able to sustain myself, I would lose every bit of dignity and self respect. I didn’t know how much of my self-value was tied to my income. I took it for granted that I would always be able to find work. I took it for granted that I would always be able to take care of myself. I didn’t know how much of my personal security was so closely tied to my financial security.

And then I fell. And when I fell, I fell hard. Not just literally to the concrete ground, but figuratively I continued to fall for three years, five days.

You never really know what you have until it’s gone.

At the time of my accident, I my credit score was over 800. I had tens of thousands of dollars of available credit. And sure, I had a couple credit cards that had balances, but not close to their limits. The months ticked by, I kept paying my bills, despite having no income. I kept thinking that I was going to get better. This situation was simply not in my purview as a possibility.

Obviously, my savings ran out, and I moved in with my parents. And I’ve been borrowing money from them ever since.

Ironically, the year prior to my accident, I left New York to help my parents after their roof collapsed. They had to move out of their house for about two months while all of the floors were replaced. It took nearly six months to get them settled again. *This* is how I see myself. I am the helper, not the helped. Or I used to be until I became completely dependent like a child. 

You don’t truly know humiliation until you’ve known the humiliation of being a middle-aged woman having to ask your father to buy tampons for you. Not just the humiliation of asking him for money for tampons, but the humiliation of not being able to drive to the store for your own fucking tampons compounded by the humiliation of not having the money to buy your own fucking tampons compounded by the humiliation of having to ask your dad. Take a second. Think about it. It’s pretty bad.

I never thought I was worthless before, but that moment hit me in the face with my worthlessness. And I have been suffocating, fighting to free myself from worthlessness ever since. The fight became more futile, and the feeling solidified, as each person (who once said they loved me) left my life…

And what happened to those credit cards? Well, one worked out a payment plan with me and spread it out over many years. One said, “pay what you can every couple of months and then settle with us later.” One decided to sue me.

Why am I telling you this?

Because last week, I received my “award” letter informing me of my monthly social security disability payments. It also calculated the amount of “back pay” owed to me. Social security disability is granted 5 months after a person becomes disabled, so my monthly payments are retroactive to December, 2014. The letter also detailed my Medicare coverage. That’s right, I now have health insurance. My worthlessness was exorcised via a long, deep, guttural groan followed by shoulder shaking sobs.

This was the first time in three years that I truly believed that I am going to be alright: I am going to be able to pay off my debts and have some left over to begin rebuilding my nest egg.

And let’s be clear here (I feel I should clarify). The amount of money is significant, for sure. But, it is not a huge amount. After lawyer fees, the payment for the past two and a half years will be just about half of what I earned in 2013, and the monthly payments are just about a quarter of what I would be earning, if I could work. It won’t quite afford me the luxury of moving out of my parents’ house, but it will allow me to begin repaying them. I can now buy my own tampons online.  

I am not happy, but I am so fucking relieved. My leg is unbearable; CRPS still governs my life, but God dammit. I’ve been having me a real hard time. And it feels so nice to know I’m going to be alright.

“This Feeling” ~ Alabama Shakes

I just kept hoping, I just kept hoping
The way would become clear
I spent all this time tryna play nice and
Fight my way here

See, I’ve been having me a real hard time
But it feels so nice to know I’m gonna be alright

So I just kept dreaming, yeah, I just kept dreaming
It wasn’t very hard
I spent all this time tryna figure out why
Nobody’s on my side

See, I’ve been having me a real good time
And it feels so nice to know I’m gonna be alright

So please don’t take my feelings
I have found at last
So please don’t take my feelings
I have found at last
Yeah, if I wanted to… I’d be alright

So I just kept going, I just kept going
And hoping I’m growing near
Well this good and fine, I spent all this time
Tryna find my way here

And I’ve been having me a real fun time
And it feels so nice to know I’m gonna be alright

Please don’t take this feeling
I have found at last
Please don’t take my feeling
I have found at last
If I wanted to, I’d be alright
Yeah, if I wanted to, I’d be alright

Involuntary

I wanted to swim this morning. My leg and foot were a little more obstinate than usual. About 11:00, I realized why. The daily Floridian summertime thunderstorms started early today.

Last night, I told you a little about the spasms starting again in my foot. At the present moment, these involuntary muscle contractions are making any kind of activity almost impossible.

And so I’ve been sitting here, with nothing to do, staring at my foot for a few hours. By this point, I have disassociated myself from my foot. It’s quite fascinating to watch as an outside spectator.

I’m not going to talk too much about how it *feels*… Let’s just say that it is more than a little bit uncomfortable… I have said in the past that this part of my CRPS feels like a boa constrictor is underneath my skin.

Admittedly, I am bored. And I’m pretty sure I have been staring at these slow arhythmic contractions in my foot for too long today, but it kind of looks like a strange, breathing, non-human creature. Possibly a sea creature… Or maybe it is about to hatch a new crop of gremlins

Here, I made a little video to show you. Captivating, no?

The Thrill is Gone

The nerve block is out of my system completely.

By now, I know the pattern well, the progression as the analgesic/steroid cocktail, injected into the nerve root between L3 and L4, fades and my autonomic nervous system restarts it’s infinite loop of misfires.

It starts with a twinge, a surge of pain. The lower fibula, about an inch and a half above the lateral malleolus. The surge grows into a zap. The zap is accompanied by a stab into the center of my ankle, right where the leg meets the foot. The zap grows into a strong blow, strong enough to take my breath away. The stab becomes a dagger, lodged. Then comes the dull ache up the inside of my ankle, inside the medial malleolus, stopping about halfway up my tibia. A tiny chainsaw across the outside of my heel. A white hot fire poker between my medial malleolus and my achilles tendon. Then, concurrently, the zip tie that cuts across the joint of my big toe, and the invisible fingers pulling at the top of my fibula.

I sometimes imagine my lower leg is on a giant’s buffalo wing platter. It’s spicy-hot, crispy-skinned, and dipped in cold bleu cheese dressing. And the giant picks up my leg and pulls my fibula away from the tibia and sucks the meat from between the bones. (Ironically, I have only ever eaten the part of chicken wings that look like miniature drumsticks; the two boned wings creep me out because of that weird meat between the bones.)

And when all the now all too familiar pain is fully firing, once the party really has really gotten started, my foot goes cold. Ice cold. It feels like it has been filled with sand. Cold, wet, gravelly sand from a northern California beach in the wintertime. It is difficult to move my foot and ankle. My foot feels heavy. My toe no longer lifts.

My skin turns a mottled grayish red color. My skin is shiny. And then the bees start stinging my leg. Not just one or two stray bees stinging in one or two places. There’s a swarming bee sting wedge. Just below my knee, extending medially and downward. The entire inside of my lower leg, down to my big toe, including the top and inside of my foot and ankle, but not including my second or other toes. Those lucky little devils are spared the wrath of a thousand non-existent bees.

Once the bees start stinging, I know what is coming imminently: the spasms and cramps. The spasms start as little twitches in my arch. A little shimmy in my calf. This is the stage where I am right now. The muscles in my foot are firing on their own. My big toe is pulling down and I am still unable to lift it up. It cramps and it hurts.

And I know what’s coming within the next day or two. And I know that from this point on, I have to closely, carefully monitor my activity. I have to time the amount of time I spend sitting, standing, moving.

The spasms aren’t just a case of the shakes. Every contraction sends an electric jolt up my leg and down into my foot. And with hundreds of contractions per minute… you get the idea.

And it’s funny. People always like to comment about my *mood*. In the days after my block: “it’s nice to see you in a good mood.” As the days pass, as the nerves return to their old tricks: “boy, are you in a baaaaaad moooooood!”

And it’s true. I am in a good mood after the block. Because I have some semblance of control over my lower leg, ankle, and foot. Because the knives and hot pokers have been removed, the tiny chainsaw stopped, the gunshot wound in my fibula healed, the cold sand drained, the bees stopped stinging, the electricity shut off, the aches are reduced, and there is no giant trying to pry apart my bones to get at the meat between my tibia and fibula. You’d be in a pretty good mood too.

And oh, jeez, you betcha you’d be in a bad mood too when it all comes back in full force.

The first time I went through it, it was a huge emotional roller coaster. The first relief of the CRPS-ity in over two years, since my accident, was pure elation. And Jesus, the let down, the depression, when it all came back after a few days…

Now that I am an old pro at these nerve blocks, I know not to be too happy. I allow myself to feel and enjoy the relief, but I know it will only last a few days. I dread that first surge. But I know it’s coming. And I know what will follow. And I know that this is the cycle that, like CRPS itself, is the infinite loop of my current life.

And this time around, I made a conscious effort to try to lop off the peaks and fill in the valleys. Yet, I still haven’t mastered maintaining a steady monotonous mood to placate the commenting onlookers and bystanders. Oh well. I can always try again next time.

So, yeah. There you have it. My nerve block is gone.