TOUCHED BY LYME: Coming back to life after Lyme disease
Guest blogger Jennifer Crystal explores what it means to re-enter the world after chronic illness.
Each September, new college freshmen take on Boston by storm. My friends and I watch them on the T, sometimes rolling our eyes at their herd-like movements and propensity for discussing their drama so loudly that we can’t help but hear them. We check out their outfits, leggings covered by short dresses we’re too old to wear, or tiny running shorts barely covering tanned, muscular legs. One friend recently mused aloud what we were all thinking, “Oh, to be 19 again…”
It’s a universal feeling, wanting to cling to youth. For Lymies, the feeling is less about nostalgia and more about grief for lost time. At some point for people struggling with chronic tick-borne disease, one tick stopped the clock entirely. I sometimes joke that I feel like I went to sleep when I was 25 (when I first got diagnosed) and woke up when I was 33 (when I went into remission and moved to Boston). For all the laughs I get, the truth is, there’s nothing funny at all about losing eight years of your life.
I recently wrote an essay for an anthology on reverse culture shock, in which I talked about the difficulties associated with “coming back to life” after an isolating illness. Late-stage cases of tick-borne disease often leave victims bedridden, too exhausted to even take a ride to the post office, let alone work, get out and about with friends, or do any of the normal things people their age do. Contact with friends trickles from phone calls to occasional emails, peppered once in a while with homebound visits.
I loved when my friends came to see me at my parents’ house, where I was convalescing. We would gather around a dining room table that had not really been mine for many years; I would host lunch in a house that was not supposed to be my own, with friends who were out living the life I was supposed to be living. I clung to these visits, for there is no better medicine than joy, laughter, and stories that remind you of who you once were, of who you might someday be again.
But those visits were also a glaring reminder of who I was not right then. While I spent my days alternately sleeping and self-administering intravenous antibiotics, my contemporaries were building careers, getting married, starting families, buying houses. They were moving forward at a natural pace in the land of the living, while I was struggling to merely survive.
As I got better and slowly stepped out into the real world, I found myself jarred by sensory overload. “Fun” activities for people my age—movies, nights out in loud clubs—sent my neurological symptoms into a tailspin, and I would spend days in bed recovering from the outing. I settled for quick trips to coffee shops or meals out with friends, but even these outings took on distorted weight. It shouldn’t be that exciting for a 20-something to go out for coffee, to be able to drive to a restaurant in the next town. For Lymies, each of these successes means the clock is slowly moving forward again, that we are rejoining the pulse of normal life.
People often ask me how my chronic illnesses affect my life now that I am living on my own and attending graduate school in Boston. I tell them that I still have limitations—I still take medicine every day, I still have to nap every afternoon, I still have to be very careful about pacing myself—but for the most part, I’m leading a relatively normal life. My normal is a new normal, but it works for me, because it’s a living, forward-motion normal.
Nevertheless, the lost time is still, at times, glaringly obvious. The last time I was really able to live this normal of a life, I was 25. I’m not 25 anymore—not in body, mind or spirit—but I don’t really feel 33 (now 34) either. I missed all the “normal” years of finding soul mates, building nest eggs, settling down. I get nervous when I think of all the things people my age are “supposed” to be doing. My biological clock ticks louder and louder each time I play with friends’ kids. Emotionally, I’m on par with my peers, but where we are in life does not match up.
I connect more with the younger students in my graduate program in this sense. Though those just out of college do seem quite young to me, my classmates who are in their mid-to-late-twenties share my goals of getting married, getting published, getting serious about our lives. I’m grateful to have this new group of friends to go through this process with me, even if technically, I’m a few years older than they are.
Because really, age is just a number, right? I recently told a friend that I wish I could be 28, because that’s how old I feel. She looked at me quite seriously and said, “So be 28.”
And so I will. Tick-borne disease robbed me of so many years; now that it’s time to re-start the clock, I’m going to be the one in charge. Watch out, world. There’s a new 28-year-old in your midst, and she is ready to take the world by storm.
Jennifer Crystal, a Lyme survivor, is working towards her Masters in Creative Writing at Emerson College, in Boston. Her website is jennifercrystal.com. Email her at jencrystal5678@gmail.com.
Lovely posting…thank you for sharing your journey and giving others hope that they too can re-enter wellness. Many blessings to you!
A poignant story of the years lost as a result of a cruel disease that wreaks havoc on the lives of so many. Thank you for your beautiful stories that reflect an understanding of the loneliness and day to day struggles of coping with a devastating illness that can turn your life upside down in a heartbeat.
Thank you, Jennifer for continuing to share about your experiences with Lyme, both the negative and positive. I love reading your posts!
I lived “in the sticks” (rural) in AR most of my life. I’m 54 or 53, DK right now. In ’94 I had an unusual reaction to a tick bite (after approx 200 bites in my life from ticks. I saw deer in my backyard that came out of the woods near my home, so why is it not logical to think there were deer ticks? But my Dr didn’t believe anyone had Lyme. At the time, ’94, I didn’t know about Lyme, so I didn’t see my Dr for it till my sister who had moved to PA got diag & treated oral pills for yrs, convinced me I had it. I sought help about 2004 but was blown off. TTBOMAbility, here were my sx (symptoms) then:
pain, muscle spasms, s-i joint pain, migraines & dry heaves – not includ weird sx after this tick bite.
sleep disturb started in ’97, I didn’t think I slept at all, sleep study showed 73% stage 1, the rest stage 2. otal sleep 3 hrs w/ 70 arousals. When I get close to falling asleep I feel a zap or startle in my brain, wh/ I’m told is imposs but I feel it in what feels is the center of my brain. This still occurs & I’ve been on sleeping pills so long that whatever prob the lack of deep sleep has caused, the pills have added a great deal to it. Even on the pills I get only about 2-5 min of deep sleep a night.
The same time my sleep/brain prob started, my heart also dev constant Tachycardia & beats very hard. I can feel the vibrations in my ear thru pillow while lying in bed on my side. I take a large dose of Beta blocker to quiet it down. Every so often I have epi of fluttering, etc.
frozen shoulder 1 yr, it freed & i had constant nerve pain around the shoulder for about a yr
on & off episodes of complete loss of muscle strenghth in my legs that would last about a wk, couldn’t even crawl cuz u need some leg ability, i had 2 squirm like a snake 2 go 2 bathroom. But each day it would improve little bt little, by the end of a wk, i was ok 2 walk.
Vision & hearing prob, some weird vision things like a curved worm shape gray thing in center of vision, some wavy visual field like 3D in the middle – episodes. Tinnitus everyday
odd rashes that would last 2 or more months
fingernail ridges so thick now that they are splitting apart in middle & i can see the ridge sticking out like thin spaghetti
low back pain alot, i moan in pain in my sleep every night till it wakes me up – since about 2003
Since 2007 when I moved to WA state for husband’s job, no Dr I’ve found believes in Lyme: The joint in my elbows are swollen on inside & hurt 2 touch or use.
For about a yr, there was a constant feeling in my head like I was in a small boat in the water being constantly rocked by waves. It was nauseating & wasn’t sure I’d make it thru that, but at least I Could walk.
My hips like around pelvis or sacral hip joint started hurting about 2010
for 2 1/2 yrs, the soles of my heels are excruciatingly painful. The worst is standing, putting my weight on them. I’ve spent most of that time lying in bed. I can’t sit in chair b/c after 5 min my neck or back will be killing me. It feels like my heels are on a layer of jagged rocks that are on fire – everytime i stand up. The back of my heels (Achilles tendon) is also very painful. i try to walk on balls of feet but can’t for long. When my heels are touching ground, in about 6 min the pain is unbearable & I go down, I have to sit, lay, whatever. I have a pain Dr & even w/ the pain med, I’m like this b/c, my body has built up a tolerance & I have 2 take much more at night now due to hip pain on both sides that is so bad I can’t even get to sleep. I used to be able to take the break-thru pain med during day to allow me to stand maybe 30 min while they were working but I don’t have enough, so I choose some sleep over walking, b/c w/out sleep u die.
Hip pain discussed above started about a yr ago, after about an hr of lying on side in bed trying to sleep, the pain in the joint of where my thigh meets my hip (the place that sticks out the most & has the most pressure on the bed while lying on side to sleep, gets so bad that I can’t stand it & no way could I keep lying there in that pain. Can’t sleep on stomach anymore b/c across back right above hips it hurts so bad it feels like my back is literally breaking in two. Can’t sleep on back, never could, but also that’s when I snore & wake up, caught in sleep study when rolled over in sleep, tho those arousals were only like 7 out of the 70.
I’ve tried everything anybody could poss try & many Dr’s. They say I have Fibromyalgia, 1 said I couldn’t poss have all the sx i listed on the new pt form, sev walked out on me & said to go to psychiatrist (I have a masters in Psy & took the PhD lic exams in AR, licensed only at Master’s level, not able to work now but I know that I need good/proper med help, the psychiatric help wouldn’t cure my med prob.!!)
I’m not including the nodules on my Adrenal & throid glands, the small masses in my liver & kidneys, & I’m most likely forgetting some.
I share this experience of “age robbery” exactly. It’s something I think of quite often, and causes a feeling of bewilderment and confusion. You see, I became extremely ill at 16. I have little to no memory of the years of being 16-20. I vaguely remember that I went to prom. My memory improved from years 21-23, although I was too sick to really live a normal life during that time. I focused mainly on getting myself through college. At the beginning of turning 24 I became profoundly ill and halfway through that year, I became homebound. I feel as though I was 23 one day, and the next thing I know after painful memories of ER visits and trying to stay alive, I’m now 26 and I don’t know how I got here. I have missed the experience of high school of which I cannot remember, of college where it is fun instead of barely staying functional and littered with doctors visits and time at the ER, of seriously dating and of getting married and having children. I have lost so much and those years cannot be replaced. My friends are working, getting engaged, getting married, and having their first children while I am STILL sick and feel I have missed out on what should have been, and am missing out on what should be. I think I will adjust fine when I get better as nothing matures you more than staring death in the face, however, I am saddened that my youth and early adult years have been stolen and cannot be returned. Years, time, and important life experiences that are meant to occur at a certain age, have no return policy because they are of priceless and intangible value.
My story of life never to return due to lyme diease.
All my years in High School I wanted to be a professional woman. At age 17 I began a clerk typist (before word processors) job at a Utility Company and attended night college courses. Thirty-five years later I though many promotions became the Director of Public Relations, awarded an associates degree, and am elected to the City Council of Independence. I have lobbied at a state level, dined with President Clinton, Tipper Gore, and others made reccomendations to the Governor for Judicial Judges. I had made it good salary, own my home, power suits, new cars. Then it happen, my legs stopped working, fatique, memory loss, frequent sick days from work and Council meetings. People whispered she is lazy. Eight months later the diagnoises. Lyme Diease. Lost the 35 year power job, lost the Council job, husband of 20 left for a much younger heathier woman, lost good salary, lost home, sold power suits to pay for health insurance, lost lights, water, phone, forced to move back home with parents. Four years later after meds and garage sale clothes I do have some improvement can visit out of the home, car ten years old and undependable, only a handful of friends left others moved on with their life. Many times I wish I was still ill. When you are so ill you do not even notice the losses I have suffered. After my improving health I remember all my losses and I wonder if it was better to just remain ill so I am not required to face the losses.