Tag Archives: lymie

A Lymie’s View from 39

by Jennifer Crystal

Birthdays and milestones can have a different meaning for Lymies and people with a chronic illness.

 

When I was six or seven years old, I asked a great-aunt how old she was. Winking at my grandmother, she replied, “I’m 39.” I understood 39 to be the last good year, the last decent age before it all started to go downhill; the year by which so many life goals are supposed to have been achieved. I didn’t worry too much, though, because 39 was always a long way off. By then I would be married, have a family, be settled in my career and stable in my life.

That was before I lost a decade to illness.

I turned 39 last month and it looks a lot different than I’d imagined, which is not to say it looks bad. My tick-borne illnesses have been in remission for years. I am writing and teaching, skiing and socializing. I’m living on my own. The view from 39 is certainly better than it was at 29, when I was in the midst of a relapse, back at my parents’ house, pulled away from my independent life for a second time.

That year I wrote in my journal, “I’m turning 29, and what do I have to show for it?” It was a sentiment I felt many times throughout the harrowing years of illness. Unable to work or even leave the house except for doctor’s appointments and trips to the pharmacy, I questioned my self-worth. Birthdays didn’t feel like celebrations; they were reminders of all that I wasn’t doing, all that I couldn’t do, all that I might never do. They were reminders of another year passing by while I struggled to survive.

What I didn’t understand then is that fighting tick-borne illness is an achievement of its own. Getting well was my full-time job, and I was working overtime. Though I often felt awful, I made strides. I was going to neurofeedback, integrative manual therapy and talk therapy appointments. I was taking all of my medications and supplements. Twice a day, I infused intravenous antibiotics and cleaned my own PICC line. I was working through the physical, mental, emotional and spiritual upheaval of being sidelined by illness, and that was certainly worthy of celebration.

I did not yet understand that success is not defined by a career, money or status. Of course, I wanted all of those things, and still think it’s important to support yourself through a job you love. That’s something I’ve worked towards in my thirties. But the fact that it wasn’t possible during the lowest point of illness did not mean that I have nothing to show for those years. I still had my character. I still had my values. I still had my sense of humor. And those qualities deserved to be celebrated.

Still, 39 is not what I expected it to be. I’m not married. I don’t have a family of my own. I am working hard but am not fully settled or stable in my career. I’m grateful for how far I’ve come, but I still want all those other things, and I’d be lying if I said I don’t feel some angst about not having them by this age. Most of my contemporaries are married with kids and mortgages and careers that allow for nice vacations. I love those friends and feel connected to them, but I’m not on the same track as them. My major detour puts me more on track with friends who are 29, because they are at the same point in their careers and personal lives as I am.

But the fact is, I’m not 29. As much as I can appreciate all that I went through in my late twenties and early thirties, I can’t get those years back. My body is aging. When I went skiing this year, I fell on some ice and remarked, “I don’t remember it hurting like this when I was younger. I would just get up and keep going.” I kept going this year, too, but spent the next day icing my sore spots and taking ibuprofen. I’m getting wrinkles around my eyes. Once in a while I pluck a silver hair from my head. My hands are getting veiny the way my mom’s and grandmother’s did at my age. I can’t blame those signs of aging on Lyme disease; I’m simply getting older.

The reality is that my biological clock is ticking. That scares me. But I’m also still holding out hope. During years of illness when I thought I might spend the rest of my life in bed, I nurtured a glimmer of faith, and it worked. I got better. Maybe not as fast as I wanted to, but it did happen. So I have to have faith that I will achieve all my other goals, too, even if they’re not happening in the time frame I’d always imagined.

If my great-aunt and grandmother were alive today, I might wink at them and say, “Maybe by the time I’m 40.”


Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at [email protected]

Never Give Up

by Jennifer Crystal

Lessons for Lymies from Winston Churchill and the Chicago Cubs

 

During the most intense period of my treatment for tick-borne illness, I lived with my parents and sometimes other family members. I shifted bases between their homes, grateful for the support of all, but keen to spread out the burden of caregiving. I did the hour-long drive between my mom’s and dad’s more times than I can count, traveling on a long, winding desolate road that connects two major highways in my home state. The route through rundown factories and old cemeteries was peppered with billboards. Among the advertisements for used car dealerships and discount insurance was a huge sign with a quote from Winston Churchill: “Never, never, never give up.”

That sign always gave me pause. Sometimes the drive took all my energy for the day. Sometimes I was too sick to be at the wheel, and one of my parents had to drive me. Sometimes I was in the midst of a Herxheimer reaction, getting the ride in early before the migraine and achiness and frequent trips to the bathroom made it impossible for me to be in the car. Sometimes I gripped the wheel or the passenger seat wondering if I would ever again have a home of my own, if I would ever be able to drive more than an hour, if I would ever feel well again.

The Churchill quote reminded me that in the middle of despair, when it’s least expected, we can come upon signs of hope. And it’s up to us to hold on, to keep traveling the difficult road, until we see them.

I was reminded of this lesson earlier this month when, after 108 years, the Chicago Cubs won the World Series. Despite their team being called “Loveable Losers,” Cubs fans held out hope for generations. The players went out every year determined that this could be the one. This year, it was.

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The victory was the stuff of history books, and not just because it took108 years. It was the kind of nail-biting, late-night win usually seen only in movies. Following the Cleveland Indians’ 3-1 lead in the Series, the Cubs battled from behind to win two more games and force a seventh game tie-breaker. They were leading for most of that game, but the Indians suddenly took the lead in the eighth inning. The game tied in the ninth, going into extra innings, and then there was a rain delay. The possible victory could not have been more drawn out. Fans huddled together in the stands and the streets during the 17-minute delay. Players huddled together in the weight room, encouraging each other.

The rains came and minutes later, the 108-year drought was over.

My home state may be in New England—caught between the biggest team rivalry in baseball—but I was cheering for those Cubs as heartily as any Midwesterner. Because I know the road they’ve traveled. I know how easy it is to give up. And I know how much sweeter the victory is when you don’t.

I receive emails every day from patients who want to throw in the towel. Some are in the throes of Lyme treatment and can’t understand why they’re feeling worse instead of better. Some haven’t been accurately diagnosed because of the poor state of diagnostic testing or physicians misinformed about Lyme. All of them are desperate.

I know when you are in the depths of despair that it feels anything but temporary. There were times when I was curled in the corner of a room at one of my parents’ houses, sobbing and shaking, certain I couldn’t hold on another minute, another second. I never ever would have believed when I was bedridden that I would one day attend graduate school, publish a book, or teach writing classes. That I would one day live in my own apartment. It happened for me because I didn’t give up, and that can happen for you too.

Don’t just take my word for it. Look to other patients who have wrestled with Lyme, like Ally Hilfiger, author of Bite Me, and Katina Makris, author of Out of the Woods. Look at the incredible new research being done every day to create better diagnostic tools and treatments. This year Global Lyme Alliance received a record number of applications for research funding. Scientists at top-tier universities in the United States, Australia, France, Switzerland and the United Kingdom are all working to get to the bottom of tick-borne disease. They’re all working to make our lives better. And that means we can’t give up: on them, on ourselves, on hope.

With new research and increased awareness, I’m sure we won’t have to wait 108 years for our victory—or even a small fraction of that.  Better diagnostics, better treatment, greater understanding, and maybe even a cure are closer than we think. We just have to hold onto hope. We must never, never, never give up.


Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at [email protected]

Halloween: No Costume Necessary

by Jennifer Crystal

I never liked playing dress-up as a kid. I didn’t like pretending to be someone I wasn’t.

 

Sure, I could get into the spirit for Halloween. There are photos of me dressed as a blue crayon, a bag of M+Ms, as a pair of lips blowing a big pink bubble, next to my best friend who was a pack of gum. But for the rest of the year, the makeup was off and the costumes remained in a trunk. I didn’t want to be a princess, a fairy, or as was fashionable in my youth, a punk rocker. I just wanted to be me.

Then I got Lyme.

The disease that had masked itself for years in my body came raging forth with such virulence that it turned me into a bedridden shell of my former self. That former self knew resolutely who she was. She was a teacher, a skier, a runner, a traveler, a social butterfly. She had driven cross-country five times (joking that was four too many); she had backpacked across Europe and battled deep powder in the Back Bowls of the Rocky Mountains. She was fun, ambitious and full of life.

Then, suddenly, she was none of those things.

My youthful aversion to dressing up seemed to return to haunt me. Lyme forced me to be someone I didn’t want to be. I didn’t want to be sick. I didn’t want to spend my days in bed. I didn’t want to be in pain. I didn’t want to be sad and angry, frustrated and scared.

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Who does? No one likes to be sick. Everyone feels out of sorts when they have a cold or the flu. Unfortunately, Lyme is like an endless flu. For months and sometimes years patients wake each day with the same aches, the same migraine, the same fever, the same exhaustion. Lyme sucks the life out of us, and after awhile, we start to lose sight of who we are. We feel shoved into a costume of illness—one we certainly didn’t pick—and we want nothing more than to tear it off.

That costume is snug. It wraps patients like mummies. There are no zippers or buttons to break free. In reality, Halloween lasts one day—maybe two or even a week if you can find enough parties. But then you take your costume off. You can choose to put on another costume at another time, just for fun. Lymies don’t have that option.

If the outside world could see how ugly the costume of illness is—how little it resembles who we really are—they might not say, “Maybe you just need to exercise more” or “You just need to get out and do something” or “You’d feel better if you were working” or “It’s all in your head.” That fun-loving, high-achieving, mountain-conquering person I once was—the one who was hidden under illness—wanted nothing more than to go for a run, get a job, or get on a plane and leave the world of convalescence behind—but I couldn’t.

After years of treatment, I’m much freer now. The illness has not completely discarded like a costume in a trunk, but it’s still loosely hanging around my ankles. Parts of myself that were completely stifled by Lyme and its co-infections are finally liberated. I’m not gallivanting around Europe, but I can take short trips. I’m not conquering the Alps, but I can spend a morning on a local ski hill. I can’t work a traditional 9-5 job, but I can write. So while I could dress up for Halloween, I’m not going to do so. Because the only person I’ve ever wanted to be is myself. And now that she is back, I’m not going to do anything to cover her up. Been there, done that!


Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick borne illness. Contact her at [email protected]

Tick, Tick, Tick: The Race Against Time

by Jennifer Crystal

When I was first sick with Lyme disease, time dragged endlessly.

 

I lay in bed or on the couchtoo neurologically impaired to do “normal” sick-day activities like watch TV or read a bookand listened to the clock tick. I had more time on my hands than most people would know what to do with, but no energy to do anything with it. Time was my enemy, because I was waiting, waiting, waiting for it to pass so I could feel better. It was like watching sand drip one grain at a time through an hourglass, only to flip it over and suffer again through the same long, painful day. The same long, sleepless night. This went on for years.

Now that I am in remission, the hourglass is still my nemesis. Because I am better but not fully cured—the case for most people who suffer with long-term tickborne illness—I need to allocate judiciously the limited energy I do have. And that tricky hourglass, which once dripped slower than molasses, now seems to flow faster every day.

Sick or healthy, all of us have an hourglass. Everyone has a certain amount of energy to spend each day. In a busy, wired world, we are all running the race against time. Friends often remark to me, “Don’t you feel like time goes faster now that we’re getting older?” or, “Where did the summer go?” Now we’re heading in to fall; with shorter days that will be clipped even tighter when we turn back the clocks in a few weeks. The race is picking up.

For Lymies in any stage of recovery, that race is amplified by the fact that our energy can run out without warning. A patient can be having a good hour—the first in days!—and then, suddenly hit a wall. Doctors use this term because it is akin to the feeling marathon runners get when they suddenly lose steam due to depletion of glycogen in their muscles. Runners can sometimes combat the condition by ingesting carbohydrates; Lyme patients, on the other hand, find themselves slumped in bed. When we’re out of energy, we’re out. We have no reserves.

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As I started to feel better, my hourglass became more reliable. It still can run out more quickly than expected, but for the most part, I know how much energy I have and how much time I have to spend it. By my calculations, it’s roughly half the time that able-bodied people get. My energy is best in the mornings. I wake up feeling strong and clear-headed. Morning is my time to write, to teach, to exercise, to go food shopping. Not all in the same morning, mind you. Harkening back to last week’s post, I’m careful to write one morning and exercise the next, leaving the grocery shopping for its own day.

Afternoons are another story. I hit a wall every afternoon around 1:30, and must nap. The rest isn’t optional. Without it, I melt down, making the evening long and cranky and the next day worthless. Naps keep my hourglass dripping steadily, and ensure the fullest glass possible when I flip it over the next day.

To a healthy person working a 40+hour work week, naps probably sound luxurious. Yes, I am lucky to be able to take the time out I need in order to function. But it also means I lose my afternoons. If I don’t meet a morning deadline, I can’t say, “That’s okay—I’ll just finish it this afternoon.” I can read essays or run small errands later in the day, but my major tasks—especially creative work—must be done in the morning.

Whether we’re better in the morning or at night, most Lymies are trying to fit a day’s work—or a day’s living—into a few short hours. This is why we get anxious when dinner plans get shifted an hour later. It’s not because we’ve become demanding and finicky from our illness. It’s because we know the clock is ticking. If I have to be in bed by 10:00 and dinner with friends gets pushed from 7:00 to 8:00, my time with them gets cut short. I’ll probably have to leave early, because the repercussions for pushing my bedtime are severe.

It’s a hard balance, trying to be flexible while living with strict time constraints. I’m grateful to friends and family who accept and accommodate my unusual schedule. If you know a Lymie, please be patient with them. Recognize that they have very little control over their hourglass of energy. If they don’t call you back, or cancel on dinner or cut short your conversation, it’s nothing personal; it just means they’re out of sand.

Time does fly by these days, and I’m just fine with that. It means my years of waiting for time to pass are over. I may not get as much time in a day as a healthy person, but I’m able to use, instead of suffer through, the hours I do get. And that, to me, is a glass half full.


 

Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. [email protected]