The Rest of My Day: The Value of a Simple Question

I have a very close friend. We’ve known each other for more than 20 years. She has been and continues to be the main emotional support in my life. She lives on the West Coast, and I, the East.

We usually talk on the phone (that’s right… on the phone… like, with our voices…) after I swim or after I ride my bike.

She is very busy. A mom, a devoted wife, business owner, active community member. She lives like I used to (one of the things that bonded us as friends early on): she crams as much as is humanly possible into a 24 hour period.

…I’ve realized that much of my self-worth was, still possibly is, tied to how productive I am, how much I do in a day…

In our conversations, we talk and laugh and just basically shoot the shit. She is usually running errands (which I love because it gives me a tie to the outside world), and I am usually resting. I cherish this woman and would be absolutely lost without her. So, what I am about to say pains me very deeply.

Our almost daily conversations always involve her asking me the question, “so, what are you going to do with the rest of your day?”

It’s innocuous. Simple conversation. Meant to be a harmless question one friend asks another to show they care.

The thing is that I always talk to her *after* I’ve done my “productive” efforts of the day. After I swim for roughly an hour, after I ride my bike 15 or 20 miles.

On most days, yes, that is truly all I “do.” And I am proud (very proud) of now having the ability to spend almost 2 active hours during a day. Some days, I might be called to teach a ballet class to children, or I might have to go to the bank, but for the most part my days follow the same simple schedule: swim, bike, meds, rest.

So the question, about the rest of my day, hits me. Hits me hard. Because I’m already done with my day before noon, her time. She doesn’t ever judge, and she doesn’t ever imply I should be more productive. I just feel like a worthwhile person should have an interesting answer to that question beyond “I need to take my medication and then I’ll probably sleep until dinner.” I have begun to dread the question.

You might think I should simply tell her about how the question makes me feel. I disagree. These are my emotions to explore. If I tell her, then that will make her feel like she has done something wrong, like she has been insensitive in some way (which, is impossible- she is the most benign, most selfless, most sensitive, most kind-hearted person I know).

My issue is with my perception of myself within the question, not with the question itself. And there is great value for me to try to explore this perception.

Why do I allow it to make me feel completely empty? Why do I allow it to make me feel worthless? Why do I judge my current life based on what I used to accomplish in a day before CRPS stole everything (including the ability to be productive) from me? And were my pre-CRPS accomplishments really that great, or was I just keeping myself busy to inflate my self-esteem and to keep myself from being bored?

The truth is, no, in fact, I am not a “productive” person by modern society’s standards.

However, I am finding ways to do the impossible. I have refused to resign my future to a miserable lonely life in bed crippled by CRPS. I am fighting my fate. I am figuring out how to adapt in order reclaim crucial parts of myself. My rational brain knows these things and tells my psyche to loosen its grip on my self worth.

Yet deep down, I feel like I’m simply pandering to myself if I dare congratulate myself on the tiny, and monumental, improvements I’ve made to my life in the past three years, four months, fourteen days. Why?

 

Advertisements

Extraordinary Machine

So there’s this dude. He sometimes masquerades as my friend.

He does ironmans (supposedly… I’ve known him for well over a year and have yet to see him complete an event. Registered, yes. Shown up and participated, not yet.). He is always “training” (again, supposedly…). And, knowing him has pushed me to keep trying to ride my bike at a faster pace and for longer mileage.

I really, really, really miss having a riding buddy. 

 So, I am definitely not in any shape to ride 50+ miles at a 19+ mph average speed. But, I can go 25-30 miles at 16 mph average. And certainly, for a “friend” this dude might condescend… right?

After registering for my half-metric ride, I let him know. I also told him about the route the ride would take. I also asked a favor of him: “will you please ride the route with me before the event so I am familiar?”

“Of course,” he said. “Whatever you need,” he said.

The dude had over two and a half weeks to carve two and a half hours out of his schedule to do this. It was around his neighborhood. I was planning on putting my bike in my car and meeting him wherever was convenient. And, in theory, supposedly, he regularly goes on long rides anyway… What’s the big fucking deal if I tagged along for 36 miles of a ride?

He was getting a bike shipped to him. His other road bike was on a trainer and he didn’t want to take it off. Fine. Whatever. Then the bike arrived. He assembled it and immediately took it out for a ride. That was on a Friday. On Saturday morning, I texted him, “want to ride bikes?” “I can’t today.” Fine. Whatever. On Sunday, one week before the charity ride, he went out on some 50 mile solo ride…

I called him on it. So, like what? Am I supposed to text this dude every morning on the off chance that he wants to invite me along? Fuck that. That’s not the way my friends work. My friends are actual friends; they keep their word and follow through on promises. My friends and I show up at one another’s house with bagels and coffee and say “c’mon, let’s go.” (Or we used to, back when I lived in places where I had true friends…)

But as I told you before, this dude only masquerades as a friend.

Like a not-so-evolved, emotionally immature (dare I say it? OK, I’ll say it) man, he got defensive, made excuses, over-reacted, and called me names. I laughed at him for his ridiculous reaction (yes, we are still talking about riding bikes), which apparently made things worse.

Hahahahaha. Sorry. Hahaha. Not sorry. Hahahahahaha.

He decided the best course of action would be to give me the silent treatment for over a week (actually, I’m pretty sure I am still in my little “time out” but I just so happened to run into him today. It was super awkward…).

He knew when the charity ride was. He knew I completed it.  Didn’t ask how it went. Didn’t put aside the silent treatment to pretend to care. And then, the cherry on the shit for a friend sundae: via Strava, I saw that he followed *the exact course* with a buddy the day after the charity ride. What. The. Fuck. Yo’?

I will never ever let him know that I know he did this little ride with his friend. That is a secret you have to promise to keep between you and me…

Fired up yesterday, I took my bike out.

Riding my bike is emotional therapy for me as much as physical therapy. I rode as hard as my body would allow. I stayed out as long as I could. I climbed hills. I went on tiny residential side streets that allow me to go fast. I went 21.2 miles. I increased my average speed by  full mile per hour (despite climbing 50% more than usual). I scored SIX (6) QOMs on Strava.

So yeah. The moral of the story is not that this guy is a dick and I should be angry at him, but that this guy is a dick, I should be angry at him, and I should go out and kick even more ass in spite of his dickish behavior.

“Be kind to me, or treat me mean. I’ll make the most of it, I’m an extraordinary machine.”

Meanwhile, Jesus. I sure would just like to find someone who wants to ride bikes with me instead of trying to create a Shakespearean drama out of it. It’s just riding bikes. It’s fun. Jeez.

 

Extraordinary Machine by Fiona Apple

I certainly haven’t been shopping for any new shoes
And
I certainly haven’t been spreading myself around
I still only travel by foot and by foot it’s a slow climb
But I’m good at being uncomfortable so
I can’t stop changing all the time.

I noticed that my opponent is always on the go
And
Won’t go slow so’s not to focus, and I notice
He’ll hitch a ride with any guide, as long as
They go fast from whence he came
But he’s no good at being uncomfortable so
He can’t stop staying exactly the same

If there was a better way to go then it would find me
I can’t help it, the road just rolls out behind me
Be kind to me, or treat me mean
I’ll make the most of it, I’m an extraordinary machine…

Cycling Series: When Rehab Becomes Training

About a month ago, I was lamenting to a fellow swimmer at the YMCA about how much I missed doing long bike rides.

She said to me, “There was a ride that was rescheduled because of Hurricane Irma. Champions Ride for Charity. It got postponed until October 22nd. There is a century ride, a metric century ride, a half-metric…”

I started to think… Not the century. One hundred miles is out of the question. Metric century? In the olden days, this wouldn’t have even been a question… Maybe the half-metric… It is thirty something miles. That is still a lot. But doable. Maybe…

Three weeks ago, when I couldn’t sleep, in a state of minimal consciousness, I registered for the metric century, a 36 mile ride.

So I started to ride my bike around the neighborhood a little more. I increased my weekly mileage, and included one longer ride per week. The most I did in one ride was just under 30 miles. I was eating well, swimming, and taking care not to push too hard before the day of the big ride.

At some point, it occurred to me: Holy shit. I’m training.

On Friday, half in a daze, half on autopilot, I picked up my packet from the local bike shop. The number 384 was assigned to me. I was told I’d be riding in honor of Thomas J. Kelly, New York City firefighter, a 9/11 first responder who passed away last year.

The day before the ride, my swim friend, the one who told me about the ride, texted me. She wanted to ride too. She invited me to meet at her home because she lives very close to the starting point.

Suddenly, I realized: Holy shit. I was really going to do this.

I’d been hydrating all day. I’d eaten well. I’d trained for several weeks. I was ready.

On Saturday night, I laid out my kit and my mismatched shoes, packed my sunglasses, gloves, helmet, number, safety pins. Yesterday morning, I woke up early, dressed, braided my hair, ate, filled my water bottles, put my bike in my car.

It was very methodical, as if I had done it all before in a past life…

I arrived at my friend’s house, we pinned each other’s numbers, and were off to the venue. She knew several people there and introduced me. Nobody seemed to notice my shoes (or the fact that I was wearing one leg warmer and a lidocaine patch). I felt almost normal. I felt like I belonged.

We lined up and just like that, we were on our way. My friend was nursing hamstring and calf injuries so we committed to each other that we’d take an easy pace. We talked most of the time, laughed about the weird things (like dinosaurs…) along the road, we remarked on the beauty of the scenery (“natural” Florida is actually quite beautiful), we took our time at the SAG stops. The weather was lovely.

My right leg hurt. My right leg always hurts. My left leg did most of the work. My left leg always does most of the work.

After the second SAG stop, I got a little nervous. We were just over 24 miles in. Twelve more miles to go. “I can do this,” I told myself. We set out again, following the markers,  still talking and laughing. And then: roads I recognized.

“We’re almost there!” I actually yelled this out loud. “We’re doing it! We did it!” I was so happy. I looked over to my friend. She was happy too. And we were cheering for one another and for ourselves for the last mile and to the finish. High fives and smiles from strangers and people we’d seen along the way.

We grabbed snacks and some water. We found photos of the fallen officers we were riding for. We were taking pictures and laughing and continued to congratulate one another all the way back to my friend’s house.

Holy shit. It occurred to me: I had fun. This was the most fun I’ve had in over three years because this is the closest I have felt to who I used to be since my accident. I

am still adjusting to the changes CRPS has made to my life, but I am adjusting. I continue to hope for the future, and the possibility of having a happy life again. Despite the misery of having CRPS.

Screen Shot 2017-10-23 at 1.42.47 PMScreen Shot 2017-10-23 at 1.42.25 PM

 

 

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.

IMG_20171010_131624_316.jpg

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.

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.

pirates-of-the-caribbean-7812

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.