On Giving Up: Upon Further Consideration

You know what? No. I take it back. I have given up.

I’ve given up on trying to have any kind of “normal” social life. I’ve given up on the frivolity of dating. I’ve given up on the idea that I can be a worthwhile or important, much less a primary, part of someone else’s life. I have forgone the notion of finding a “life partner,” much less an actual husband. I’ve given up hope of having regular physical interactions with other human beings (it isn’t uncommon for me to go months without so much as a friendly hug). I have given up on thinking, “maybe someday I will be a mom.” I am far too old for that now, and who knows the havoc it would wreak on my poor dysfunctional body.

No. I must give up on all of that. CRPS has made me perpetually peripheral to my relationships and my relationship with the real world. I am now only important to me and that has to be enough.

Most important though, I’ve given up on trying to be out of pain.

I have CRPS. It hurts. It will  hurt in varying degrees for the rest of my life. Nowadays, a “good” day is about a 7/10, which I would have described as a full 10/10 prior to my accident. Every step: hurts. Every kick in the pool: hurts. Every pretend pedal on my bike: hurts. Sitting: hurts. Standing: hurts. Attempting to dance: hurts. Opening the refrigerator door: hurts. But laying around doing nothing hurts too.

And it all hurts my psyche more than I could ever have imagined.

But what’s the answer to this ever-compounding pain? More medication that will further inhibit and isolate me? No. I have to give up on the idea that this pain will ever go away. I have to find a way to endure: if my leg isn’t in one of its famous crippling uncontrollable dystonic spasms, if I am not about to vomit from the pain (which happens more often than I’ll admit), and if I am not going to pass out, I will will myself to carry on.

Alone, lonely, and in pain, I force myself to carry on.

Because, upon further consideration, I have given up on everything except myself.

 

 

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Unrecognizable

At the beginning of the week, I spent time with my best friend of over 20 years, her husband of over 10 years, and their 6 month old baby.

These are my people.

I don’t live close to them (I don’t live close to any of my close friends). But, my friend and I traveled extensively together in our 20s and at various points in our lives we lived together. Her husband is exactly what the husband of your best friend should be: a completely separate person, but an extension of the love of a friendship.

I am truly happy when I am with them. I am not guarded. I am able to truly relax and admit who I am. And they accept me.

We talked about books we’ve read, scientific research that interested us, talked about North Korea (I don’t know why, but all of my close friends and I have always been fascinated by North Korea. It’s a thing. A tie that bonds, I suppose.), we ate Mexican food, we made Alexa turn the lights chartreuse and say ridiculous things, we watched episodes of The Dead Files on Netflix. We didn’t do anything “exciting,” just the regular stuff that decades long best friends do.

And the baby. So full of joy despite an impending tooth or 26. He is learning to sit up on his own from laying down. Sometimes gravity gets the better of him. He thinks my nickname (“JayPea”) is hilarious. He liked when I explained sciency stuff to him. He loves Harry Belafonte, but his absolute favorite song is Hey Ya by Outkast.

I temporarily felt like my old self again, even though my CRPS didn’t stop for a second. The visit renewed my hope that I could feel at ease, almost normal, concurrently to feeling everything that comes along with CRPS. If I have the right people in my life…

Before I left, my friend took a few photos of me with the baby.

Today, I went back to my regular swim schedule at the YMCA. Feeling renewed, hopeful, and happy. I talked to one of the regular swimmers, who possibly the closest thing to a friend I have at the Y. I told her about my visit and I showed her the photos of the baby, including one of me holding him.

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I didn’t tell her that *I* was holding the baby; I assumed that would be obvious.

“Wow!” She said, “your friend is really pretty!”

“Uhm… That’s me…” I said.

“Oh, huh. I didn’t even recognize you.”

I mean… I wasn’t wearing a swimsuit, and I was wearing a little bit of make up… But really? She didn’t recognize me?

She has seen me roughly three times per week for over a year. In all that time, I guess she has ever seen me truly smile.

Am I really so miserable now, in my daily life, that I am unrecognizable if I am happy?

 

On Giving Up: Human Nature

I am astonished when people say to me, “I don’t know how you keep going. I probably would have given up by now.” But, I think I am actually pretty normal in my reaction to my accident and determination in recovery.

You see, as the result of one accident, most people won’t lose their home, their (supposed) life partner, their ability to work, their financial security, their independence, their ability to lead an active lifestyle, their ability to enjoy simple pleasures like a walk on a beach or a movie in a theater, their ability to do simple tasks easily (like grocery shopping or open a refrigerator door), much less every aspect that once defined who they were.

I used to say that I have lost everything because of this accident. I have come to realize that this is untrue. I still have the love and support of my parents. I still have a handful of wonderful friends who are gentle and help motivate me. And I still have my bike. 

So, since most people won’t experience this degree of loss, they can’t imagine what they would do if they were in my “situation.”

It is overwhelming, for certain. It is a scary, for certain. I have very dark days, for certain. I have trouble imagining a life for myself in the future. I don’t have any of this figured out yet. 

What does it mean to “give up” anyway? I know people use it in phrases that are meant as flippant hyperbole reiterating a platitudinous construct meaning “You’re in a tough spot in life. You’re working incredibly hard. Keep it up.” But, let’s think about giving up in terms of the actual words.

Typically when we give up on or quit something, we move on to some other option. But, what happens when you have no other option? When there is no other place to go for safety? When there is literally nothing else you can do? Giving up is a luxury. Giving up is lot more difficult than just an abstract notion of moving on.

Even in my darkest days, I can’t conceive of the only way to truly give up…

As long as I am alive, giving up is simply not possible. I’m not saying that because I think I am some super-human, super-motivated, super-driven CRPS “warrior” martyr. No. I’m not. I, just like everyone else, am simply governed by regular old human nature.

I tried for the first months, out of denial and sheer desperation, to cling to my life as I knew it. Everything (apart from the love of my family and some very dear friends) gradually fell away. It is the loneliest place to be.

I was lost. I still am.

Here’s the catch though: CRPS isn’t life-threatening, and yet I will have it for the rest of my life. That means I have (presumably) over forty more years of this. I don’t have over forty years’ worth of tears. I can’t stay in bed in pain with a laptop on my lap for over forty years. I can’t have almost no social interaction for over forty years.

The permanence is unbearably daunting. I don’t have a choice; I am forced to face it, confront it, and deal with it. Knowing that this isn’t going to go away (on its own or possibly at all), I said what any normal human would say in my situation.

Fuck it. I’m far too young for this shit. I gotta try to figure it out. 

And so, I am doing what any normal human would do in my situation. Day by day, I keep trying to salvage scraps of my life. Because I have no other option, including giving up.

Giving up isn’t human nature.

Cycling Series: Dog Attack

I was almost killed today by a Welsh corgi.

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I was riding my bike around my parents’ neighborhood. Some jerk had three (3!) smallish dogs without leashes, one being the aforementioned welsh corgi.

I was really cruising because I’m trying to beat my time on that particular segment.

I saw the situation ahead and knew it was dubious. I slowed down, looked at the corgi and accidentally made eye contact.

I was wearing sunglasses so I don’t know how the dog knew we locked eyes.

The corgi attacked, lunging at my CRPS foot.

My main concern was not crashing as I barked a loud “NO!” at the dog. It stopped the attack as I stopped my bike, and my foot may or may not have made the tiniest bit of contact with some part of the beast.

I yelled at the guy that he needed to have his dogs on leashes, that his dumb dog and I could have been seriously injured because of his laziness and stupidity. [Please insert as many F-bombs into the story as you feel I would have deemed necessary…]

Then he yelled at the dog, “Bosco! What the hell were you thinking?”

I said, “He was thinking he didn’t have a leash and it would be fun to attack a cyclist.” [insert more profanities- Yosemite Sam style- here…]

I started to roll away and another one of the dogs started coming toward me, more slowly than Bosco.

I said to the guy, “You got another one over here. You might want to get control over all of this.”

As if making an excuse for the dog he said, “He is blind.”

I said, “Well, there’s a *brilliant* idea. A blind dog wandering around outside without a leash.”

He said, “You have a valid point.”

I didn’t stick around to find out if he was being sarcastic.

What is wrong with people?

Something has really been bugging me since my five minute swim.

I know what you’re thinking… but that’s not it. I’ve actually managed not to chastise myself (too badly) about it.

The ulcerative colitis dude was swimming in the lane next to me and saw me struggling. When I stopped swimming, he stopped too. You know, to talk. It seemed nice enough. I though he was being kind, so I pandered when I really wanted to retreat into breathing techniques and transcendental meditation.

“Are you OK?”

“Yeah, it’s just a bad day. A bad day.”

“Are you in a lot of pain?”

“Yes.”

“So… Do you take medication for that?” He got some kind of weird twinkle in his eye.

“Uhhm. Yuh. I have medication that I take…” I trailed off. I was dizzy, my vision starting to close in.

He didn’t seem to notice or care as he launched into a laundry list of “do you take” controversial med-x, controversial med-y, controversial med-z, controversial drug group-a, controversial drug class-n… He listed no fewer than 8 medications and groups/classes of medications.

It pissed me off. He seemed excited thinking he had tapped into some hot-button topic plaguing our modern society.

Meanwhile, I was trying not to vomit from the pain in my leg. I got out of the pool. I walked away. He was still talking.

Halfway to my deck chair, I turned back. He was still just hanging out at the end of his lane, waiting for me to indulge his curiosity. I disappointed him.

“You know, I’m not happy or proud about the medication I have to take to control my CRPS. I have very good doctors who are trying to get me to remission.” I hobbled the rest of the way to the chair.

I am actually quite proud of myself that I mustered the self-control not to snap: ‘Hey buddy, it’s none of your fucking business!’

Jesus. If someone I knew, even peripherally from the YMCA pool, was in obvious pain, I would be more concerned with their well-being than their prescriptions.

(I’m very, very sorry about the explicit song I am about to insert… but… seriously…)

Dude, what the fuck is wrong with you?!

 

Sometimes: There is no do, only try

I thought I could manage today. Despite getting up and trying every day, some days are simply unmanageable.

I woke up in pain, as usual. But something about this morning’s pain was different. Sharper, more present in some way. I got ready to go to the pool out of habit. My lower leg felt like a cinderblock that was being chipped at by a pick axe.

It’s OK, I thought. It will loosen up once I get in the water and start moving.

I have a system for getting in the water. If I have a lane to myself, I go to the deep end. I put my left foot in the water, then my right. I circle my ankles away from each other, then toward. I make gentle bicycling movements with my right leg. I hold onto the block handles and ease my body into the water. Facing the wall, I put my feet up, hold on, and stretch my lower back and hamstrings. I turn and stretch my shoulders. While stretching my shoulders, I revisit the bicycling motions with my leg. And then I start to swim.

So, like all mornings, I followed my routine this morning. But, my ankle and outer lower leg, instead of dissipating into the familiar dull widespread ache that I can clench my teeth through, started to burn and ache more pointedly (for lack of a better word). I still thought it would work itself out.

I pushed off the wall with my left leg, as always. I started to swim. Something was definitely not working properly in my leg. My lower leg had no buoyancy and just sort of noodled around beneath me. By the first 25 yards, a hot poker was lodging itself under my medial malleolus and the giant hand was tearing at my fibula. With every attempt at a kick, the pain became sharper, hotter, more specific. One hundred yards in, I had a needle driving itself into my calf. I tried to circle my right ankle several times at the end of each length of the pool.

A swim just wasn’t going to happen today. I had to stop after five minutes. I swam 250 yards before easing myself out of the pool. I hobbled over to the nearest deck chair and sat there for 45 minutes with my leg elevated in the air, touching nothing.

I eased my foot into it’s brace, hobbled to the car, went home, and remained in bed ( with nothing- except for the thousands of imaginary bees- touching my leg) for the rest of the day.

Yoda would be proud not.

Cycling Series: 29 Miles

Something very profound happened today.

Today was the day when I’d decided to try 5 laps around the neighborhood. 14.5 miles. The roads are finally clear (enough) of debris from Irma. I started my Strava session and set out.

I thought of a clever name for my ride. I took photos of my bike next to a downed tree and a sign to the energy company (some houses are still without electricity). I was officially Strava-ing, just like the real athletes. And, oh yeah, I also completed my five laps.

I was all set to save my activity. But wait, what’s this? A glitch! Son of a bitch! Strava said I only traveled 2.2 miles. The map was ridiculous. Apparently I hopped fences, cut through yards, took a shortcut through the golf course.

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Crestfallen, I went into the house. I was tired, sweating and texted a friend for moral support. I was hoping to get a reply along the lines of, “aw, it’s ok, you did it.”

Instead, this was the reply:

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Shit.

That means I only had one choice. I had to do it again. I hydrated, ate some gummy snacks, refilled my water bottles, started Strava again, and set out for another five laps.

The session recorded successfully the second time around.

 

 

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Holy shit. I rode my bike 29 miles. Twenty- nine miles!

And then it occurred to me: this was the first time in over three years that my right ankle didn’t dictate, much less inhibit, my activity. My brain didn’t even think about my dumb crippled leg. It wasn’t a factor in the decision to redo my ride. I cried.

My right leg is still very much afflicted by CRPS, but I think I might actually be starting to adapt. I think I might have found a way to hold on to one of the beloved passions that defined who I was. I might be able to reclaim just a tiny bit of my identity. I cried some more.

The one cleat idea was the best idea I will have all year.