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Treating Instead of Denying Yourself

by Jennifer Crystal

Spring is a time of rebirth and renewal.  Many people engage in some kind of spring cleaning, whether it is airing out their homes or themselves. People open their windows and shake out their rugs. Some do a dietary cleanse. Even religious customs at this time of year are about cleaning out and letting go—Jewish people rid their houses of chametz, leavened food, for Passover, while Christians give up something in observance of Lent.

These customs have good intentions. I respect them and understand the purpose they serve. But this year, after reading a friend’s recent social media post, I started thinking about them a little differently. On Ash Wednesday, which starts the period of Lent, my friend announced that instead of giving something up for Lent, he was going to treat himself to one small, special thing each week.

I stopped to consider this bit of reframing. What if the season wasn’t about denying ourselves something, but instead about adding something positive to our lives? What if it was about nourishment, the way we nurture early spring flowers so they can grow? Refusing ourselves something can hold a negative connotation, but nourishing ourselves has a lovely ring of self-care.

As a patient of chronic tick-borne illness, this reframing especially struck a chord with me. Lyme patients already are denied so much. At our sickest, we can’t work; we can’t socialize; we can’t take care of our daily needs. We’re restricted, and that can make us feel guilty, sad, ashamed, and angry, on top of feeling physically wretched.

Treating Lyme and other tick-borne illnesses means giving up a lot: for me, it means refusing gluten, processed sugar, alcohol, and caffeine. I cannot stay up late, skip my afternoon nap, watch fireworks or a stimulating show, or over-exert myself physically or mentally. These are my needs and they’re in place for good reason. I’m grateful that they allow me to keep ticking.

But sometimes I do feel like I give up a lot—and certainly have given up a lot of bigger things over the years, like long-distance travel, friends’ weddings, financial security, and full-time work at a time when I was supposed to be starting my career and building my life. With those losses came depression, anxiety, and self-blame. It took me a long time to accept my needs and to love myself in spite of them.

This spring feels like an excellent opportunity to renew that self-love. Part of caring for yourself, of course, is recognizing certain things are toxic to you and you must get rid of them. Elimination of foods, stressful people, and negative emotions that hurt you— all are important for self-cleansing. If you are a Lyme patient eating batches of chocolate chip cookies, you are probably overloaded with gluten and sugar, suffering from a candida infection, and jeopardizing your ability to get well. Getting rid of those foods would be a good way to nurture yourself toward optimal health.

But what else can you add that is healthy and feels like a treat? There are lots of great recipes for gluten-free, naturally sweetened brownies and ice cream. These I still eat in moderation, but that makes them all the more special when I do indulge. Dark chocolate is low in sugar and has many health benefits. Eating one piece every day puts a smile on my face.

How else can you fill yourself up rather than deplete yourself? I recently started treating myself to monthly massages. I couldn’t have done this when I was in the throes of Lyme, since a massage likely would have spread toxins further around my body, but now that I’m in remission, gentle massage is good for me. I leave feeling relaxed, my nervous system reacts in kind, and I am able to nap and sleep better.

Your treat doesn’t need to be something big, though. If you are bedridden, there are still ways to nourish rather than deny yourself. How about flipping through photos of happier times, to remind yourself of what will again be possible once you’re well? Or writing down three good things about each day? Or rubbing a nice lotion on your hands and feet? Or finding a favorite new fruit or vegetable to add to your diet?

Cleansing is important. This season, I’m going to make sure the things I do get rid of are things I really don’t need, rather than things I want but am denying myself. In this way, giving things up will be a way of treating myself. In addition to getting rid of things, I am also going to add goodness, to think of more ways to be kind to myself, so that I enter summer ready to blossom.


jennifer crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She has written a memoir about her journey with chronic tick borne illness, for which she is seeking representation. Contact her at: lymewarriorjennifercrystal@gmail.com

Spring REALLY Will Come

by Jennifer Crystal

This time of year can be a tease. With daylight savings time, the sun is suddenly brighter, and there are hints of warmer weather coming, Not surprisingly, we start to think it’s almost spring. Birds chirp. Early flowers bloom. People are smiling again. Then a late-season storm hits. The flowers are buried, the outraged birds squawk, and people become more downcast than in the deepest throes of a January freeze. We curse and wonder if spring will ever come.

Every year when this seasonal give and take happens, I’m reminded of my long, uphill battle against tick-borne disease. At first, when I was bedridden and sick, it was always winter. I saw no hope of a metaphorical spring. But the longer I was on treatment and the harder I worked at adjunct therapies, the more glimpses of health I received. Eventually I started having strings of good days. My head was clearer; I could type and read short articles, I could walk short distances. My joints didn’t hurt. I sometimes made it a full week without a migraine. I felt like I was actually making progress.

Then I’d get walloped with a Herxheimer reaction. My body would get overloaded with dead bacteria killed off  by the antibiotics. This was a good thing, but the drugs were killing spirochetes at a faster rate than my body could eliminate them, which made me suddenly feel awful. I crashed as if I’d been hit by a freakblizzard.

These glimmers of health, of spring, can feel like teases, but they’re not. They are, in fact, signs of what’s to come. Eventually, my Herxheimer reactions became fewer and I had more good days than bad. That took a long time to achieve. I was almost a year on intravenous antibiotics. Then I felt good for two seasons before completely relapsing back to winter. But even then, my body fought its way back to remission.

The trajectory is different for each Lyme patient, because no two cases are alike, and co-infections can complicate treatment and recovery. Some patients feel better in a matter of weeks or months. Some are sick for years. Some “herx” every couple weeks and follow a relatively steady cycle of that pattern; some get shorter or longer periods between herxes, with little to no warning when they will manifest.

For all of these patients, remember, spring is possible.

I lost several years of my life to tick-borne illnesses. Even when it was beautiful and warm outside, I was in bed. I felt stuck in endless winter. Then I went through periods with teases of spring. But now, those wintry days are so rare than I can count them on one hand. With maintenance medication and therapies, I’ve stayed in remission for a decade, charting steady improvements each year.

No matter how many late season storms we get, no matter how long the snow lingers on the tips of daffodils, spring eventually arrives. Every single year. If you are a Lyme patient feeling stuck in endless winter, I assure you that your spring will come, too, and the sun will feel even warmer than you imagine.


jennifer crystal

Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She has written a memoir about her journey with chronic tick borne illness, for which she is seeking representation. Contact her at: 

lymewarriorjennifercrystal@gmail.com

lyme caregiver

Care Versus Overcare: A Fine Line

by Jennifer Crystal

Well-meaning Lyme caregivers can easily cross the line from care to overcare. Here are some simple rules to follow for both patient and caregiver.

 

Recently a friend was going through a difficult time. When she confided in me, I offered her a non-judgmental ear and lots of hugs. I gave advice when she asked for it. Being there for her made me feel good. Indeed, as Doc Childre and Howard Martin describe in The Heartmath Solution, “care inspires and gently reassures us. Lending us a feeling of security and support, it reinforces our connection with others. Not only is it one of the best things we can do for our health, but it feels good—whether we’re giving or receiving it.” [1]

But then, as my friend’s problem became more serious, I became deeply worried about her. Her situation was on my mind often, and I started checking in with her in an overbearing way. I was anxious about her all the time. While my feelings came from a place of love and concern, I had crossed into the dangerous territory of overcare.

Childre and Martin define overcare as “a burdensome state…when care from the heart is bombarded by niggling worries, anxieties, guesses, and estimations from the head.” They caution it is “one of our biggest energy deficits, and it’s at the root of a lot of other unpleasant emotional states, including anxiety, fear, and depression.”

The line between care and overcare is so fine that it can be hard to distinguish the two. However, it’s important to be able to do so, to protect our own well-being and our relationships. This is especially true—and difficult—for Lymies and their caregivers.

While Lymies may take care by following doctor’s orders, we can have a hard time enacting self-care, because we are plagued by feelings of guilt and shame. Instead of being gentle and patient with ourselves, we spend time and energy wondering when or if we’ll get better, beating ourselves up for being sick, and worrying that we are burdens. I spent years doing this. I see now that I was in a detrimental state of overcare, which hindered my ability to get well.

Well-meaning Lyme caregivers can easily cross into overcare, too. Many work tirelessly to care for their children, parents, siblings, or friends who are sick. That much care is greatly appreciated, but can easily be taken too far, to the point where the caregiver gets burnt out. Once they hit that point, they’re not helping the Lymie or themselves. Moreover, when a caregiver over-identifies with a problem, getting too involved and worrying to the point that their own mental health is affected, the patient may feel smothered or guilty. Everyone loses.

So how do patients and caregivers negotiate this fine line? Here are some lessons I’ve learned along the way.

For Lymies:

  • Be a friend to yourself. Be as kind to yourself as you would to a friend going through the same thing. Would you make that person feel guilty or ashamed for being sick? Give yourself the love, care, and understanding you would give to someone else.
  • Give yourself positive affirmations. Instead of berating yourself, try out thoughts like, I’m doing a good job. I’m going to get through this. This is not my fault. Sometimes this disease is two steps forward, one step back, but ultimately I am moving in the right direction.
  • Establish a good support network. This could include a therapist, friends, family members, other patients—anyone who understands your situation, gives you the empathy you need, and can talk through your worries and concerns.
  • Take care of your mental health and your physical health. Any long term illness causes situational anxiety and depression, and neurological Lyme can make them worse. Personally, seeing a therapist and treating my anxiety and depression have helped me to physically heal from Lyme.

For Caregivers:

  • Give yourself breaks. Even if you are the primary caregiver of a patient, make sure you have other people who can fill in for you so that you can take time off.
  • Make time for fun. Don’t just take a break to shower or go to the pharmacy. Take yourself out for an ice cream cone, see a movie, or do an activity you enjoy. You are not neglecting the patient by doing this; you are recharging your own batteries so that you can continue to care for your loved one.
  • Have a support network. Have a therapist, friend, or family member you can talk to about the emotional toll of being a caregiver. Try to direct your worries to this person rather than to the patient.
  • Ask. Never assume that you know what a patient needs. Ask specifically how you can best help them.
  • Don’t smother. No one likes to be fussed over for too long. Depending on your relationship with the Lymie, establish a routine that’s comfortable for both of you: maybe you talk by phone briefly when the patient is feeling up to it; maybe you send one check-in text a day; maybe you stop by once a week for a quick visit.
  • lyme patientRemember, it’s about the patient. As a natural giver, this is one I struggle with the most. My instinct is to help, but I have to first be sure someone wants my help. I have to see if the concern I’m giving is about my need to show I care, or if it’s about the person getting the care they need.

For Both:

  • Remember the airplane rule. On a plane, you have to put your own oxygen mask on first before helping others with theirs. First and foremost, you must always take care of yourself.
  • Ask yourself: is this care or overcare? Keeping yourself in check based on the definitions above will help you to give healthy rather than detrimental care. Checking myself when I went into overcare with my friend helped me to be a better friend to her and to take better care of myself.

[1] Childre, Doc and Martin, Howard. The Heartmath Solution. HarperSanFrancisco, 1999 (159, 165).


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 jennifercrystalwriter@gmail.com

Keep It Simple: You’re Just Tired

by Jennifer Crystal

Fatigue is such a central part of Lyme disease that it can be easy to overlook. Don’t.

 

Recently I was on the phone with a friend telling her my woes. Angst about one area of my life led to anxiety about another, until I’d snowballed into an overanalytical, weeping mess.

“I think you need to just go to sleep,” the friend said.

I looked at the clock. It was almost my bedtime. Maybe I was just tired. Maybe in the morning my issues would seem smaller and more manageable.

Of course, they did. With a good night’s sleep, I was able to look at things with a clearer mind and more centered emotions. This was hard for me to understand when I was so tired because fatigue—especially the crushing exhaustion of Lyme—can make it impossible for us to see straight. It can make it difficult for us to recognize that when we’re feeling like our worlds are falling apart, sometimes the only real problem is that we’re tired.

Fatigue is such a central part of Lyme that it can be easy to overlook its various gradations. Lyme patients are tired, to some degree, all the time. For years, I struggled with a flu-like fatigue that left me shackled to the bed. Walking to the bathroom, lifting a dish from the table, and drying my hair were physically overwhelming tasks. Despite that incredible exhaustion, I was often unable to fall asleep, turning me into what my doctor once described as “a woman with her hair on fire.” A person is considered legally insane if they haven’t slept in 72 hours. At times I was awake for weeks on end.

After months of antibiotic treatment complemented by appointments with a sleep specialist, neurofeedback sessions, cognitive behavioral therapy, and sleep medication, I eventually was able to get a good night’s sleep. Of course, it’s all relative; those nights often still included heavy sweats and crazy nightmares, but at least my brain could rest. Over time the bad nights lessened in severity and frequency, and I was able to get more restful sleep, including restorative afternoon naps. With more hours logged in my sleep bank, my overall health improved. My body was finally getting the rest it needed, and my symptoms started to abate. Moreover, I became less of that weeping, emotional mess.

The problem with this chronic illness is that sometimes old symptoms flare, and when that happens, it’s hard to figure out what’s what. Fatigue can return virtually unnoticed. Even with my improved ability to sleep, I still get tired when I push myself physically or neurologically, and sometimes it’s hard to see that I’ve pushed too hard until it’s too late. Then, suddenly, I get overly tired and overly emotional. My thoughts grow repetitious. The songs and words that are always running in my head get louder. These flare-ups remind me of my worst Lyme days, and I start to worry that the castle is crumbling. Is my anxiety a sign I’m relapsing or neurosis? If I can’t nap for two days in a row, will I ever be able to nap again? Have I done myself in?

“No,” my mother tells me every time this happens. “You’re just tired.”

And almost always, after a neurofeedback session and an integrative manual therapy session and several good days of rest, my body and mind calm down. I return to my baseline of remission, where I function within a structure of good rest, where I work and write and socialize, where I offer a steady hand to friends needing emotional stability instead of the other way around.

When I was in high school, I struggled with math and science. Recognizing my tendency to overthink answers, my biology teacher used to walk by my desk during exams and whisper, “K.I.S.S.” The acronym stands for “Keep It Simple Stupid” and was first used by the U.S. Navy in 1960 as a design principle: designs work best when they are simple and not complex.

Same is true for our thoughts when we are overtired. Sometimes we do have issues that cause true anxiety, and sometimes symptom flare-ups are true signs of trouble. More often than not, though, we simply need sleep. I try to keep that in mind now when my hair starts to blaze. Next time, before I call a friend and let loose a snowball of angst, perhaps I’ll just crawl into bed and make the call in the morning, when things are almost always better.


jennifer-crystal

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 jennifercrystalwriter@gmail.com

Being Lyme Brave

by Susan Pogorzelski
#MyLymeLife

When you’re finally diagnosed with Lyme disease there’s a feeling of hope. That hope can turn to pain and desperation as new treatments induce Herxheimer reactions.

 

“Does she have Lyme disease?” I remember my dad asking as he, my mom and I sat in the tiny exam room of a small brick house three hours from home.

My face was ashen. All I wanted at the moment was to layer my legs with wet paper towels to keep them from burning; all I needed was a few minutes of sleep, even if it meant curling up on the crinkling paper of the exam table. My ears were buzzing and my heart was racing, but I gathered what little energy I had to turn to my new doctor, silently begging for some confirmation of our suspicions.

“Oh, yes,” he replied. “And at least one of the co-infections.” He reached for a paper outlining my new treatment plan while my parents and I exchanged relieved smiles. Tears welled in my mom’s eyes; I could see the weight visibly lift from my dad’s shoulders. At last, we had answers. At last, I could start on the road to recovery.

“It’s not going to be an easy journey,” my doctor warned gently. “You’re going to feel worse before you get better.”

I nodded and listened as he explained what he meant, but I didn’t care. All I could hear were those words: “You’re going to get better, you’re going to get better.”

* * *

I should have listened to my doctor. Or at least, tried to understand what he was telling me. But I was so eager to start medication, so eager to get betterto get my life backI didn’t care to consider what he meant by “worse.”

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I’d learned all about the Jarisch-Herxheimer reaction—where the Lyme bacteria release toxins during die-off that cause an inflammatory response, worsening symptoms—during my initial research of Lyme disease. But I didn’t fully realize what that meant.

The herx reactions started almost immediately after I began my cocktail of antibiotics. Where before the fatigue made it impossible to exert energy for long, now I was sleeping 18 hours or more a day, too tired to even lift my head from the pillow. Where the joint pain and muscle aches in my legs were once barely tolerable, now I woke up crying in the middle of the night, clinging to the walls as I made my way to the Epsom salt bath because I could barely walk. Where the physical sensations were unbearable, the neurological and psychological symptoms became tortuous.

My memory seemed to float away like dandelion seeds on the wind. I couldn’t remember the words for postage stamps (“that thing you put on envelopes”) or doorknobs (“you know, that thing you use to open a door”). When I saw my best friend in the grocery store parking lot, I thought she looked vaguely familiar, but I couldn’t remember her name, never mind what she meant to me. When I read, large passages of text blurred into blocks of letters that didn’t make sense, like a foreign language I’d never learned; I remembered what a stop sign meant only after I was through the (thankfully deserted) intersection.

It only worsened.

Depression turned to desperation. Anxiety became paranoia.

I was afraid to fall asleep, the nightmares becoming so vivid. I couldn’t tell the difference between what was real and what was just a dream, and I spent half the morning trying to calm my racing heart and remind myself that I was real and the rest was only a figment of my imagination. Anxiety poured into my waking life. On the rare day I was able to make it into work, I stood huddled in a corner of the elevator, frozen by inexplicable, irrational fear when a kindly-looking man stepped in after me. At night, every creak and groan of the house sent me into a panic. I had my dog, who’s always been quick to alert me whenever someone so much as passes on the other side of the street, but there wasn’t anything he could do to dispel the fear that paralyzed me.

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The knowledge that another unavoidable herx cycle was just over the horizon kept me suspended in anxiety. As the days and weeks passed, I kept reminding myself that I was killing the germs, that I was, in fact, getting better. It was cold comfort, but I was grasping for comfort wherever I could.

For six months, I fought through the deluge of symptoms each herx brought on. I tried to calm my mind through meditation and distractions. I took Epsom salt baths twice a day, and I altered my diet according to the best detox methods. Eventually, the pain began to ease and the fatigue let up. Slowly, words returnedthere when I called for them—and though the nightmares lingered when I woke in the morning, I knew they were just fading dreams.

* * *

It took six months for those heavy herx reactions to abate. Even now, nearly five years and one relapse later, it’s hard to think about how I ever got through those days. When I relapsed, that same fear plagued me once again. I wondered if it would be that bad again, wondered if I could survive it a second time.

It was. And I did.

My herxes now seem mild in comparison: a few days recovering in bed, some muscle aches that are soothed with baths, words that still don’t come easily but aren’t lost completely. I recognize it now as the price to pay for eradicating the germs from the body—germs that desperately try to cling to their host with everything they’ve got, the herxes serving as one last moment of triumph, begging us to give up and give in.

We’re stronger than that. We’re stronger than the Lyme.

Looking back at what I went through those first six months, I’m reminded how brave we are for enduring such affliction, with only the scant knowledge that we’re getting better despite the pain to keep us going.

“It’s not going to be an easy journey,” I can still hear my doctor saying.

No. But we’ll be braver for it.


Opinions expressed by contributors are their own.

Susan Pogorzelski is the author of “The Last Letter,” a semi-autobiographic novel about her struggle to find a Lyme diagnosis and subsequent journey through recovery.

Trauma and Lyme Disease

by Susan Pogorzelski
#MyLymeLife

How could I compare my experiences with Lyme disease to those who had endured worse?

 

It’s taken me a long time to get to this point, to be able to admit that what I’ve been through in the face of this illness has been traumatic. The words “trauma” and “suffering” were always reserved for other people—people who faced unspeakable horrors, visibly fighting their demons with inconceivable bravery. How could I dare use those words when so many had been through so much more? How could I compare my experiences with this disease to those who had endured worse?

The truth is, Lyme disease is a traumatizing experience. From the initial diagnosis through recovery, it leaves its scars in a way few other illnesses do—invisible wounds from daily battles permeating our everyday life. I didn’t want to admit this. I wanted to get through recovery and move on. I thought I had, for a while.

When I went into remission after two and a half years of treatment, I was eager to move forward with my life, pursuing dreams with vigor and tackling challenges with ease now that I was presumably healthy. Slowly, those years of pain and fatigue, of isolation and loneliness, of questioning my own mortality and ability to survive passed into memory, becoming a part of my history. I had let it go; I had moved on, and I wasn’t looking back.

But then came the relapse, and with it returned all of the pain, uncertainty and old fear. Suddenly, I was facing again what I had fought so hard against, and I plunged back into depression, wondering if I would survive a second time. Back again was the familiar pain and the fatigue draining every ounce of energy from my body. Back again was the paranoia and anxiety. I couldn’t bear to leave my house. Back again was the knowledge that I had to keep fighting relentlessly for fear that I might succumb to this disease if I let up for just one second.

Hour after hour, day after day, year after year of fighting is enough to make anyone grow tired and weary, but the hardest part of Lyme disease is that it never relents. In the beginning, you’re fighting for a diagnosis among feelings of betrayal from the very doctors you entrusted to help save your life.  They question your symptoms, tell you it’s nothing more than a virus, pat you on the shoulder and tell you you’re just sensitive, and slowly you begin to wonder if maybe they’re right. Slowly, you begin to lose faith in the medical profession and, worse, in yourself.

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When you finally do get your diagnosis, it’s like an oasis in the desert, and you’re so grateful to put a name to the enemy that has stolen moments from your life that you wear it like a badge of honor. Suddenly you want to scream, “Here’s proof! Look at what I’ve been through! Do you understand now?” But you’re met with blank stares and nonchalant anecdotes about that time your colleague’s aunt had Lyme and it wasn’t that bad. They question your character, spread rumors that you’re not really that sick, and you fight for your reputation and livelihood, at the same time desperately trying to build awareness for a disease so few understand, so someone can finally understand you.

Then comes treatment and recovery, the biggest battle of all. Every single minute is a fight for your life, and you never feel safe because you’re always gearing up for another battle as you struggle against this invisible enemy inside you. This enemy which has slowly drained you, stealing moments and breaths until there’s hardly anything left and you feel like you’re only existing, not living.

That’s how the relapse broke me. I couldn’t relax because I never felt safe. I couldn’t have fun because I’d forgotten how. I couldn’t look too far ahead because I feared I would always be one step away from being that sick again. I felt shattered by these years of suffering, plagued by a fear that it wouldn’t end.

Lyme disease is traumatizing to the mind and spirit, especially when you suffer for so long. Day in and day out, we live with a disease that does its best to bring us down, and every second, we’re fighting to survive. Even when we get a break, even if we reach remission, the memory of this fight is still there in the back of our minds—a knowledge that any minute we might have to arm ourselves with renewed strength, renewed courage, and fight again.

In the year since my relapse, I’ve had to face this fear for what it is: trauma due to the many nuances of this illness. I’ve had to admit to myself that what I’ve been through—what every Lyme patient goes through—is a war of a different kind, leaving behind its own invisible scars.

Like any trauma, it takes time to heal. Like any struggle, it can transform us into something more positive, if we let it. Because the good thing about scars is they show us where the cracks in our armor are, and our experiences help us fill them up with something stronger, someone new.


Opinions expressed by contributors are their own.

Susan Pogorzelski is the author of “The Last Letter,” a semi-autobiographic novel about her struggle to find a Lyme diagnosis and subsequent journey through recovery.


 

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Seasonal Fear of Missing Out

by Jennifer Crystal

Many Lyme patients can’t enjoy the wonders of the fall season.

 

Autumn in many places is beautiful. In New England, leaves ignite in rustic colors and then fall in fun jumping piles. Out West, the Rocky Mountains are kindled with bright yellow aspens. Across the country, people are donning flannels and boots, picking apples, going on hayrides, watching football, and drinking pumpkin-spiced everything.

Many Lyme patients can’t enjoy the wonders of the season. They’re too ill to pick apples or carve pumpkins, too neurologically impaired to watch a football game, and too tired to go leaf-peeping (let alone leaf-jumping—especially with the fear of ticks!). Some children with Lyme are even too sick to start the new school year. Instead of buying notebooks, meeting teachers and friends, and playing at recess, these kids are stuck in bed. Fall, then, for those with Lyme and other tick-borne illnesses, comes to represent what the word implies. It conjures up images of dead leaves trickling to the ground in sad brown clumps.

Summer, metaphorically, represents the best days of our lives; long-term illness can make you feel like you’ll never get that time back. When you miss a season and can’t stop the next one from creeping around the corner, the shift feels like an actual fall. You sense that life is passing you by. You wonder if you will ever get well as the anxiety and depression that often accompany Lyme start to churn in full force.

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The loss of sunlight doesn’t help. Shorter days are tough on anyone’s psyche, and we all dread turning back the clocks. Early sunset can spawn sadness in the healthiest people, and the loss of an hour can really impact a neurological Lyme patient whose circadian rhythm is already disturbed.

What, then, are we to do with fall?

Fall FOMO—Fear Of Missing Out—requires a shift in perspective. The essayist Joe Bonomo writes, “It’s the charge of the autobiographical essayist to turn himself slightly, to alter his gaze so that it faces a direction other than inward…to produce something fresh, startling, and vividly human.”[1]

When you’re sick with Lyme, it’s hard to imagine yourself as the author of your life because illness directs so much of your narrative. But we do have control over perspective. Appreciating where we are, even—especially—at our lowest points, requires the slight turn that Bonomo calls for.

Actually, if we think about it, it’s what the season calls for. What is a seasonal change, but a shift? Instead of looking at this time of year as a period of impending darkness, what if we saw it as a season of beauty? It doesn’t require good health to appreciate the changing leaves. To see their vividness out the window, from the confines of bed. To drink a cup of hot cider—or pumpkin-spiced something—and smell and taste the season. To look at autumn as a new beginning and think: I survived the heat of summer, and now I have the beauty—not the desperation—of winter to look forward to. (After all, winter has the word win in it!).

If we make this shift, we turn autumn into something fresh and startling. Most importantly, we take charge of our personal narratives. And that’s a win not just over a season, but also a win in the battle against Lyme.

[1] From “In Defense of the Ordinary”, published in Brevity, April 2013


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. jennifercrystalwriter@gmail.com