Today’s post may not be exactly like one of my normal blogs, but it’s something I want to talk about today in a very open way and by telling some stories. These are snapshots from my memory. While I do have a plethora of memories I could write about, these are the ones that are coming to mind tonight. And I want to get something posted before bedtime so I can feel like I’ve not lost myself again.
A couple of years ago I went to visit a good friend of mine up in New Jersey. She’s someone who is near and dear to my heart, and who I met in yoga teacher training about six years ago, so I look forward to our trips every time we get to go. On this particular visit, she and her husband took us on a day trip to Bear Mountain in New York State. And it was everything I’d imagined the northeast would be.
It was trees and mountains. It was a lake full of splashing kids near the shore and adults in life jackets paddling in small kayaks. It was a gift shop with rustic-themed souvenirs and an outdoor bathroom that reminded me of a forest cabin. It was a hiking trail with rocks and lush greenery all the way up.
It was also my first trip since I’d become really sick and I just didn’t have the stamina to fully participate. I remember breathing heavily and struggling to get up that hiking path as my friend and her husband sprinted ahead, and as my husband came along slowly behind me. I remember sitting down with my friend at an overlook about 15 minutes up, knowing she wanted to go further on with the guys but feeling grateful she sat and talked with me instead.
I also remember feeling utterly defeated by my body as we sat and watched a train snake picturesquely around a hill and along a river. And then I remember the excruciating pain in my knee on the way down, and the hope that it was mostly hidden from the others.
House of Blues
My husband went to a concert last year with some friends at a place here in Dallas called House of Blues. It was an old school hip-hop concert by some random artist from the early nineties, and it was one I would have loved to see.
I wanted to get dressed up and maybe dust off my heels. I wanted to fix my hair and put on some dark berry lipstick, which I rarely get to do anymore. I wanted to go out there and recapture my adolescence with likeminded middle-agers, and remember how I used to feel before I felt the way I do now.
But by 7 p.m. I was already so fatigued and reactive that I knew I wouldn’t be able to make it through the concert. I’d have trouble standing and I’d be too tired to dance, and beyond that I’d likely make my husband leave early. And I just didn’t want to be that person.
So instead of putting on my heels and my dark berry lipstick for a fun night out, I wished my husband a good time and watched him head out the door looking sharp. I answered a message a bit later from one of our friends asking why I wasn’t coming (“I’m tired and didn’t think I’d make it too late. No worries! I hope you have a great time!”), and then I took a shower and got into bed.
I was sad but resigned. What else could I have done in that moment? I didn’t want to ruin it for the others.
A few weeks ago I took a trip to Atlanta to meet my new coworkers and to see my boss (and her boss) in person. I’d known it would be hard on me and I’d tried to mentally and physically prepare, but there’s no getting around your health when it simply is unable to cooperate.
I’d started my trip in a deficit because things had been unusually busy at work and I’d just finished an extremely stressful project. I was leaving on a Tuesday and I’d tried to rest the weekend before, but it just wasn’t enough recuperation time (nothing ever is, it seems) and by the time I got off the plane I was already on the downhill slope.
What happened, first, was that I didn’t sleep the entire trip. I was reacting to the flight, to the hotel room, to the food, to the stress of meeting people. To offices and to elevators and to weather and to food that my body doesn’t normally ingest.
One morning I found myself in the office restroom praying my stomach would pull itself together before a meeting. Another afternoon I got dizzy while a colleague was explaining something to me on my computer, and I asked her to pause for a moment so I could try to get myself together. I finally told her to continue and I faked being fine, because I didn’t want anyone to think I couldn’t do the job.
The second night of this trip I called my husband after an exceptionally long day, and after a happy hour where I couldn’t drink, and after meeting up with my sister-in-law, and after working on an important project that had to be done by morning. And I just laid there in my rickety hotel bed, crying at 11:30 p.m., hurting down to my bones.
“I can’t make it like everyone else,” I’d said. “I’m so tired. Everything hurts so badly and I can’t sleep. I don’t know how to make it through the rest of the trip.”
A Random Thursday
Tonight (it’s Thursday) I found myself falling to the kitchen floor before making it to the sink to wash my plate. I’d been nauseous for a couple of hours, I’d been burning up and sweating, and then I’d been plagued by chills. Earlier in the day I’d been fatigued, I’d had brain fog, I’d had skin pain on my leg and a slight rash on my arm. And then I'd reverted to feeling okay for a bit (this happens often).
Around 5:30 p.m. I’d tried to eat some okra and experienced GI upset, so I tried to eat again around 6:30 p.m. (eggs this time) to allow me to take some enzymes and bile salts. And after reading something upsetting online immediately after that, my body said that was it – no more.
My husband asked me if I needed some water and I said yes, but to also bring me some Benadryl. I took my little pink pill and then I sat there and cried until my body was calm enough to get up and walk out of the room.
“How do I keep going every single day?” I’d said to my husband. “Being sick is a full-time job, and I’m trying to work a full-time job on top of that. I just don’t know how to manage.”
So here I am now, writing this post before I take more medication and attempt an evening walk with my husband and head off to bed. Because as a writer I use my words to process things and to try to make sense of life. I use them to get my feelings out and to share my experiences. I use them to forge invisible connections and to make me feel like I’m contributing something to the world.
One of the things I’d said to my husband while sitting on the floor tonight was, “I can take more medicine but I can’t think when I do. And then what am I, if I can’t think? A writer has to be able to think.”
Who am I if I can’t write anymore?
I know that sounds really narrow, but writing is the thing that I feel I’m meant to do. It’s the talent I feel I have to contribute. Sometimes, though, it’s so hard to write when I’m spending so much time trying to survive. It’s why I haven’t put any new blog posts out in several weeks, and why I’m running behind on getting my book promotion together.
So I guess that’s what I wanted to write about today. I know so many people who are silently suffering from chronic illness, from cancer, from depression, from pain. And while we talk about how hard it is to make it through every day amongst ourselves and with our spouses, we don’t often share that piece with the world.
So I’m here to tell you that if you see someone with a medical condition or some other challenge, and you see them trying to hold down a job or raise a family or volunteer or just get up in the morning, you should know that it’s an enormous feat for that person to keep going. Not just physically, but mentally.
Because it’s the worst feeling in the world to be a prisoner in your own body. To want to do something but to be limited by your exterior. To need to work in order to secure your future and get the healthcare you need, but to not know how to keep going because your body can’t keep up.
Will I make it 10 years? Fifteen? Five? Even less? I don’t know. But I know I’m still here because there’s something I’m supposed to be doing. There’s a talent I have and there are all of these experiences I’ve overcome that I want to share.
So I’ll finish with this: I was listening to a podcast this morning of an interview with Ina Garten. Apparently she just lived her best life day-to-day, not thinking too much or planning for the future, but rather focusing on being her best at whatever she was involved in. And in doing so, she sort of rode along and landed where she was supposed to be.
This resonated strongly with me because I don’t really have control of what’s going on in my life right now, so I do try to live day-to-day as much as I can. But also, I can still try to write as best I can every day that I can. And I can still search for the energy to put my book out into the world, because the stars have aligned for me to do so. And I can still do my very best in my job every day, even if it's not as good as I wish it was.
Any of us who are sick can just do the best we can, every day, and maybe that’s enough for now. Maybe we’ll ride along and just land wherever it is we’re supposed to be.
Thank you for reading.
The Big Pause