The Loneliness of Sobriety & Chronic Disease

The Fourth of July: America’s birthday! History! Fireworks! Cannons! And beer. Lots o’ beer. Being in my 20’s, this holiday (and pretty much every other one) involves a heavy amount of drinking. I went to one such holiday event this year, but I don’t drink. I prefer not to inflict extra pressure on my liver in addition to that brought on by my medications despite the fact that my liver is, as my rheumatologist says, “a champ”. My doctor and I have decided that it is safer for me not to drink – that’s my story, and I’m stickin’ to it.

So many of our cultural traditions involve drinking that it’s no wonder that people confronted with a teetotaler are sometimes a little puzzled. And though most people seem to accept my refusal of a drink without much curiosity, I do encounter hesitant questions. “You don’t drink? Not ever? But surely occasionally? May I…may I ask why?”. Sometimes I think people who are drinking are uneasy around sober party-goers because it’s outside of the cultural norm, and they can’t understand how we can possibly be enjoying ourselves.

People tend to assume that if I’m not playing drinking games with them I’m not having fun. Add to that my generally reticent nature and my tendency to find and claim the lounge chair in the corner because of the fatigue I feel almost all the time, and I might begin to look like the very picture of misery. But I am able to have a good time in the midst of all the bacchanalian activity. It’s just not recognizable to most people. I’m so happy to sit in the company of other people, have the occasional chat, and just enjoy the sunshine – not to mention the large spread of food.

Look, the truth is that being chronically ill and sober can be lonely. But it’s not lonely because I can’t or don’t want to participate in the same activities that you do. It’s lonely because many people don’t understand the reality of my life and the choices that I make because of that reality. I don’t mind being on the periphery. Some people, really healthy people, have a hard time understanding that. They don’t know how much effort it takes me to get through one day. They don’t know that I settled on making a trifle to bring to the barbecue because a) it tastes like sunshine, b) it feeds a crowd, and c) it takes minimal energy and that’s good, because minimal energy is what I have left after walking to the store, shopping for ingredients, and walking them up the stairs. And I know it’s a hard thing to understand. I don’t think it’s ever possible to really truly understand it, even with the help of the Spoon Theory, unless you experience it yourself. Fun and happiness for me means hanging out and relaxing.

So wild fun-havers, don’t worry about us sober folk. Have faith that we know to manage ourselves in such a way that if we’re uncomfortable or not having fun we’ll just remove ourselves from the situation. We’re not there to judge you or “harsh your vibe” (as the cool kids say?). We’re there to have fun in our own way, hanging out with you.

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For My Dad on Father’s Day

My phone rang at 4:15 AM on November 16th. I had only been sleeping for two hours. There was a birthday party for my boyfriend Mike the night before, and while I left early because of some fatigue, I stayed up to hear about any shenanigans I might have missed. It wasn’t hard for the phone to wake me up, and I didn’t even think anything could be wrong; just a peculiar early hour call. If anything, my heart was pounding from bounding out of bed to make sure the phone wouldn’t wake anyone up.

It was my mom. My father was involved in a major car accident. Hit from behind by a tractor trailer, he was transported to a hospital in Norwood, MA, and then airlifted to Beth Israel in Boston. At that point we didn’t know the extent of his injuries, just that he was in critical but stable condition. “What should I do?” I asked my mom in a pleading voice, as though there were some specific action I could take that would make everything okay. “I don’t know. Just pray.” she said. My mom is a big say-er of prayers. I am not, but that morning I lay back down for about 10 minutes to try to collect myself and found myself clumsily taking her advice. When I was unable to stop shaking, and knew I had to gather my courage and get to the hospital, I got up, dosed myself with some panic attack meds, and took a quick shower because I knew I wouldn’t be back for awhile. It’s odd how very rational thoughts pass through your brain in times of extreme panic.

I had to call my brother Julian and tell him. Not wanting to worry him and his wife, Jenna, I sent a series of oddly calm text messages and voicemails, which in retrospect was probably more disturbing. In the Uber on the way to the hospital I chatted about the situation with the driver, letting him reassure me that everything was probably fine. Once I arrived at the hospital and saw my mom though, I let all my sadness and worries pour out.

My dad and I are not big talkers. Our relationship is fine, but quiet. Now I was sad for all the missed conversations we could have had, all the time I could have gotten to know who my dad was outside of being my dad, and all the times I could have used words to show my love for him. I was afraid he didn’t know. I was afraid that he only saw his flaws, worried that I saw them too, and that they colored my opinion of him. My mom reassured me that he knew I loved him, but I continued to feel the empty pit in my stomach.

After my brother and sister-in-law arrived, we were allowed upstairs to the Trauma ICU to see my dad. Surprisingly, he looked pretty good. A little banged up, quite a few tubes and wires everywhere, but overall, good. He had fractured his spine in a few places, and they needed to do surgery to stabilize his neck as quickly as possible, so we only had a few minutes to visit. As the rest of my family filed out I hung back. I slipped my hand into his swollen one, and gave it a gentle squeeze. And I spoke to him, like I always wanted to. I told him I loved him, and that whatever his faults were and whatever mine were, they didn’t matter. I loved him and only that was important. Julian poked his head around the door to make sure I was alright, and we left the room together.

My dad needed more surgeries in the next days, and stayed in the T-ICU for 3 weeks. He was sedated most of the time, but I continued to talk to him, in the best way I knew how. Whenever I visited I would write to him in a journal I left in his room. I wrote about my days, his days, the nurses, his visitors. I would always end with “I love you”. Many of his visitors did the same. His friends wrote about stealing his pain meds and running around his bed to try to wake him up. His sisters and brother wrote about their visits. Julian and Jenna wrote. My mom wrote every time she was there, and she was there every day, multiple times a day. Mike wrote, with his trademark irreverence. My sisters wrote. Everyone wrote and my quiet dad’s book was filled with love.

After months of the hospital and rehab facilities my dad came home. He continues to improve and is working again. The other night, for the first time since his accident, he went out to play his guitar. I am comforted by the fact that he still has his journal and hope that if he ever needs words of encouragement, he reads the letters his friends and family wrote.

This is my letter to my dad on Father’s Day: I love you, I am so happy you’re home, and I am proud of all the strides you’ve made. None of us are perfect, but what is important to me is that you are my dad. You are my dad, and I love you.

We don’t speak many words, but those are the ones that are important.

1 Step Forward, A Few Steps Back

I was getting into a good groove with my arthritis. We were getting along, as much as you can get along with a chronic illness, and I was feeling pretty good after a cortisone shot in my elbow. I could finally straighten it, flip pancakes if I was so inclined to make them (I was not), throw a baseball if I wanted to (I did not), or hold my iced coffee comfortably (I did, many times over). I was gaining weight. Life was golden.

But then I got a virus. A very strange virus that affected only my throat and brought me many tiny ulcers all up in there. TMI? Sorry, I can be an over-sharer. I couldn’t work for a few days. I couldn’t eat or drink comfortably, so I lost a few pounds. I didn’t even want to hold my coffee. And worst of all, I had to skip my meds 2 weeks in a row. Not that I love them so much. No, I don’t relish the thought of methotrexate hangovers every Saturday morning, my one true day off. No, I’m not a big fan of injecting the mystery substance that is Actemra into my body. But I need these medicines. They keep me moving, and probably in the grand scheme of things, alive.

So even though my throat no longer feels like it’s covered in tiny knives, I feel kind of crappy. My wrist is doing its weathervane thing, aching and telling me it’s going to rain. My ankles are protesting the walk to the bus, and they’re sure as heck not going to enjoy standing all day at work. And I’m pretty much just achey all over, muscles and all. I don’t feel good, my constant refrain.

But we press on don’t we? So I’m back to work, drinking my coffee, eating, writing, and living. One step at a time; forward, back, forward, back, forward. I’ll come out on top eventually.

Panic, Thy Name is Lemon

I’ve been struggling a lot with my anxiety the last week. There are some aspects of my life that have been causing me a lot of stress recently, and I’ve definitely been feeling it in the ol’ brain box. I could feel it building up all week so I drew from the techniques I have in my back pocket – extra sleep, eating regular meals, cutting back slightly on caffeine, Tree Feet* – but it just kept coming on, and suddenly I was eating a brisket sandwich in the basement of a barbecue restaurant fighting against a rising tide of panic while freakish anthropomorphic lemons sneered at me from the wall murals.

It really took away from the sandwich.

I managed to choke down most of it with coaxing from my ever-patient boyfriend and escape the lemons. Now that I was calm(er), I assumed I would be able to conk out at home and get a good night’s rest. Alas, that was not to be. Exhausted though I was from my panic attack, I was unable to quiet my mind enough for sleep. I ended up with about 2 hours before dragging myself to work.

Writing this from a much calmer vantage point, I realize how important it is to stay on top of my mental health. That means trying to leave extra stress from work at the door when I have downtime, and being easy on myself. I need more rest and more sleep than some other people, and that’s okay. It’s up to them whether they can accept that or not. I also realize I need to make time to do what is good for me, like scheduling in exercise and preparing my own meals. The point is, I need to cut out external stressors so I can lead a healthier, more productive life. It’s definitely something I struggle with, but hopefully with practice, something I can master.

*What is Tree Feet? Tree Feet is a relaxation exercise I do: sit, feet planted firmly on the floor, and breathe in and out while imagining the breath flowing through my feet like tree roots. Hence, Tree Feet.

Gimme Some Sugar…No, Give Me All of It

For the past year or so, I’ve been thinking about cleaning up my diet a bit to improve my general health and, hopefully, my RA. I like to call my diet the Buddy the Elf diet; high in sugar, low in pretty much anything else. Brunch is my favorite meal because it’s basically dessert for breakfast. I eat pie late at night so often, I have an official name for it: Night Pie. Okay, it’s not the most creative name, but it tells it like it is.

I will never be the poster child for a balanced healthy diet. But I’ve become increasingly concerned about my super sugary diet. Nutrition has always been tough for me. I often have a decreased appetite and lose weight easily, especially when my arthritis is active or my anxiety is particularly bad. While this might not sound bad to many people, especially those who struggle to lose weight, it isn’t great since I’m not intending to lose weight. It’s because I am sick. So I’m never eager to deny myself a sugary treat because I’ve always figured I should do whatever I need to do to keep my weight stable. I’ve had nutritionists recommend daily milkshakes!

The idea of giving up sugar is anxiety provoking to me, because I’ve come to view sugary foods as soothing, and eating them as something that makes me happy. I hesitate to classify myself as addicted to sugar, but it is something I’ve thought about.

I’ve been trying to make small changes where I can. I order my coffee without sugar and then I add it myself (half a packet, which I would estimate is a little less than a teaspoon). I try to make and bring my own lunch to work – though admittedly I often fail. In that case, I try to be aware of the things I’m purchasing since so many foods have added sugar.

This is a balancing act that I need to practice and perfect. Someday I might even try to skip dessert.

Intro to Me

Hey blog people. This being my first post, I think we should get to know each other a bit. My name is Kit, I’m 28, and I live in Boston. Here are some facts, fun and otherwise, about me:

  • Health, or lack thereof, is a big deal to me. I have juvenile rheumatoid arthritis and panic disorder, plus a shiny titanium hip.
  • I’m pursuing a master’s degree in health communication.
  • I keep trying to eat healthy food, but it’s an uphill battle. I love dessert and coffee! Brunch is my favorite meal because I can eat dessert for breakfast in public and have it considered socially acceptable.
  • I used to be a dancer. I’m not anymore, but I’m trying to start exercising again. That’s going…okay.
  • I love to read, and I’m a fast reader. Currently tearing through J.K. Rowling’s A Casual Vacancy.
  • I love TV. Tina Fey, Amy Poehler, and Mindy Kaling are some of my favorite creators. I think of them as my spirit sisters.
  • I guess I just love stories in whatever form they’re handed to me.
  • I have a Cocker Spaniel named Sunny, great parents, two little sisters, one big brother, and one sister-in-law. I want to apologize to my human family members for listing the dog before you.

Enough about me, since I’m sure you’ll learn plenty over time. What are some things I should know about you? What kinds of things are you interested in reading about? I want to make sure my writing is relevant to my readers. For a quick overview of what I’ll be writing about, see my About Me page. Enjoy the blog!

Closing thought of the day:

This might make me a lousy New Englander but please, no more news about #Deflategate. Tom Brady is going to be okay guys. Let’s move on.