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?

 

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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.

Lay-Down Comedy

I was talking to a friend on the phone the other night, describing some CRPS nonsense or another, and I said, “I don’t have a leg to stand on.”

He paused, gurgled back a chuckle because whatever I was talking about was, in fact, not anything to laugh at, he paused again, and asked, “uhm, did you just intensionally make a leg pun?”

Of course I did. I do it all the time. Leg and nerve puns are great. “Shake a leg,” “I’m on my last leg,” “this is fraying my nerves.” I could go on. But I won’t.

Puns, along with dry (arid, extra-dry) sarcasm, help me tolerate it all. I guess you could say that I have a penchant for finding humor in situations that are exceptionally not at all funny.

My friend commended my ability to make light of my overwhelming circumstances. Pretty soon, we were both laughing a little too hard about CRPS and the ridiculous overarching shitstorm that I call my life. He told me that I could (should, really) make up a stand-up comedy routine.

“Yeah, except for one small detail: I can’t actually stand up.”

Right. Of course. So I’d have to find a way to deliver the routine from my bed.

So I gave it a little (very little) thought: my lay-down comedy routine would probably be some bizarre hybrid between Disney’s Bedknobs and Broomsticks

and a much less thrashy, much less maturbatory rendition of Madonna’s Like a Virgin performance from her Blond Ambition tour.

Think about it. It’d be great.

That’s What Friends Are For

I have a very specific memory of Dionne Warwick’s song That’s What Friends Are For. 

I was eleven. As usual, my mom picked me up from dance class and took me to my older brother’s swim practice. I took off my tights, grabbed a kick board and got in the water wearing my leotard. The sky was that lovely color that happens just after twilight, reminiscent of The Pirates of the Caribbean ride at Disney World.

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The air was soft and warm and felt like velvet, the water was soft and cool and felt refreshing on my sore muscles. My mom was nearby reading a book, my brother was practicing his sprints in the next lane with about 100 other kids, and I was cruising with my kick board. Just when I thought the moment couldn’t get any better, the coach played the radio over the loud speakers and That’s What Friends Are For came on.

I have no idea why I remember this. Maybe because the feeling of the song perfectly matched the feeling of that evening. It just seemed like Stevie Wonder needed to be there in that moment with me and his harmonica.

I am surprised at how much I have drawn on this memory throughout my life.

The most recent time was yesterday after my swim. My swimming buddy had a rough swim the other day. I knew she was hurting and probably would not make it back to the pool for a couple days.

After I got out of the water (shaking, but not snapping my fingers), I sat on the deck chair and thought about my upcoming trip to New York (I am dreading it). I thought about my friend and realized that it would be a full week before I saw her again. I felt curiously sad. I realized how much I genuinely like her and will miss her. This will be the longest that we’ve gone without seeing each other since September. She has gone from being “just my swimming buddy” to being a dear friend.

And, in the middle of my lamenting not wanting to go to New York and missing my friend, I heard a yell from behind me. “JENN!!” Scared me to death. I turned around, and on the other side of the chain link fence was my friend.

I couldn’t believe it. I hopped over to her. She said she was on her way to teach. She knew I would still be there and wanted to stop by to wish me luck in New York and apologize for not swimming. Apologize? I thanked her (so much!) for coming to see me. I told her I was just thinking about how much I will miss her and how I plan to swim at the YMCA in The City. We talked for several minutes and she was on her way.

Afterward, tears welled up in my goggle marked eyes behind my sunglasses. I was just so damn touched that she would drive to the YMCA, park, climb up a grassy hill, and yell through a chain link fence. Just to say hi to me.

It is easy to feel alone and overwhelmed and scared and like all of this is just too much to bear. But, that’s what friends are for.