Spotlight on Lyme
My journey to living past Lyme disease
Lying in the hospital bed that night, I knew I had crossed some type of pivotal life threshold.
Amidst all the sickness, the doctors, and the frantic friends and family members by my side, I vividly remember thinking to myself that this was surely the beginning of a life-altering chapter. At the very core of my being, there was part of me acutely aware that my life was about to take a drastic turn into the unknown.
How It Started
I had been sick for months prior to finding myself in that hospital bed. My symptoms started ever so subtly that even I couldn’t quite pinpoint a problem at first. I vaguely remember starting to feel more tired than usual, but it wasn’t enough to stop me from carrying on my life. I was 23, at a relatively new job that was fast-paced and demanding, and I was determined to prove myself worthy of the seemingly limitless financial and career opportunities that dangled before me. I was putting in some serious hours learning a new industry, studying for licensing exams, traveling, and taking on as many projects as I could handle. There was no time for sickness…until there had to be.
I first tried to address my fatigue with simple things. I stayed in on weekends, cut out some social engagements, went to bed earlier — all to no avail. This was a different kind of tired than I had felt before; it was all-encompassing and imprisoning. No matter what I did to rest, it felt there was no way to escape the exhaustion.
As time went on, new symptoms slowly crept up on me. I had a few swollen lymph nodes, my knees began to ache as I walked up flights of stairs, and it felt as if I was losing control of my body. My appetite was up and down, I was losing weight, and I felt so weak that some days I seriously questioned if I’d be able to hold myself up in the face of a blustery wind.
I had begun to visit the doctor’s office as my sickness worsened, but my ambiguous symptoms kept the realm of diagnosis wide open. While I awaited the results of countless blood tests, it seemed that endless possibilities hung in the balance: an obscure virus, an autoimmune disease, fibromyalgia, something cancerous — or maybe something psychological?
Admitting Something Was Wrong
As I attempted to juggle doctor’s appointments with my fledgling career in the investment industry, it quickly became apparent to my boss and co-workers that something wasn’t quite right. I admitted that I was having a few health concerns, and it wasn’t long before the symptoms permeated my life to a point where I could no longer hide the fact that I was sick.
One day while driving during my morning commute, my near vision suddenly blurred to a point where I was unable to read the controls on my dashboard. This was most definitely my first of many moments of mental and emotional upheaval. My boss and I were supposed to meet a potential investor for a 9 a.m. meeting, and let’s just say that not being able to see clearly wasn’t on my checklist of things to deal with that morning. A little before 8 a.m., I called my boss to inform him that I may not be in attendance for the meeting. When I told him why, he immediately rushed from his house to the office, shirt untucked with his suit jacket and tie in hand. He handled the situation with grace and kindness, drew upon his fatherly side to comfort me while I got ahold of the doctor’s office, and insisted to have his executive assistant drive me to the appointment the second she arrived to work for the morning.
By the time I was seen at the eye doctor it was a few hours later, and my vision had returned to normal. I went through some testing, but everything checked out fine, and I was told it was likely just an ocular migraine. Short-lived, unpredictable symptoms were becoming an ongoing pattern for me. While physical issues were becoming more common, they came in waves, varied in severity, and seemed to change at the drop of a hat. I seriously began to question if this sickness was all in my head. Could it be possible that these symptoms were not physical at all, but only a manifestation of my mind? This was a thought that started to rock my foundation. I considered myself a mentally strong person and if anything, thought I was directing my mental power to push through the physical symptoms and keep my life in order. But what if it was the other way around — was I simply imagining all of it?
Surrender. It’s a word that packs a punch and that at the time, I associated solely with defeat. As my blood tests began to return, results generally showed more signs of health than illness. My initial Lyme test came back negative, and so did the results for a variety of autoimmune disorders. Further bloodwork for certain cancers seemed to take ages to return and I was referred to make an appointment with an oncological surgeon for evaluation of my swollen lymph nodes. For what seemed like the longest few weeks of my life, my diagnosis swung between the possibility of cancer or nothing (physically) at all.
In the meantime, I was becoming sicker by the day. My body would almost shut down from exhaustion, and I was experiencing episodes of mental incoherence. I couldn’t remember basic facts or spell simple words, and struggled to communicate functionally for significant periods of time. My head felt like a heavy storm cloud, full of fog and ready to collapse at any moment. I began to experience severe headaches at the base of my skull, low-grade fevers, episodes of vomiting, and my weight had dropped from 112 pounds down to only 92.
Soon, it was fourth of July weekend and I knew I was going to be sick. My head was pounding, I was mentally foggy, nauseous, and incredibly weak. I went to a walk-in clinic, but was told my case was too complicated and to consider taking myself to the emergency room. In an attempt to avoid the hospital on a holiday weekend, I opted to stay with my mother, who wanted to keep an eye on me. Within a few hours, I was in the midst of a violent vomiting episode. A family friend who was an EMT came to visit and immediately called for an ambulance.
While I was too sick to recall many of the details at the beginning of that evening, once the vomiting ceased and I had returned to some level of mental clarity, I immediately felt defeated. I had ended up in the hospital – a place I dreaded to be. It was the ultimate reality that there was something seriously wrong, and I could no longer win the fight to keep my life going amidst illness. I had to surrender.
The Journey to Diagnosis & Treatment
My potential diagnosis changed with the shifts of attending emergency-room physicians. I remember the comments vividly and their phrases swirled around in my head — “There’s a possibility of leukemia or lymphoma.” “She presents with symptoms similar to malaria.” “Well, if she can stop vomiting and keep something down, we could send her home tonight.” It was quite the gamut of medical opinions.
I was officially admitted as a hospital patient somewhere around 4 a.m., and the next day wasn’t any better in terms of a diagnosis. While I still felt incredibly weak, I was officially able to keep down a few sips of ginger-ale and had returned to mental coherence. I even sent my boss an email from the hospital bed saying I was a little held up and likely wouldn’t make it in to work on Monday, but perhaps by Tuesday, things would be better.
Clearly, my feelings of defeat were short-lived. While I by no means felt healthy, I remember thinking for a fleeting moment that perhaps these past few months had really all been a fluke. Could all of my unexplained symptoms have culminated into this crucial moment and forced themselves out of my body? I thought to myself how lovely it would be to forget that any of this had ever happened.
While in the hospital, I was sent for a chest x-ray and had a few teams of specialists perform evaluations, but wasn’t receiving treatment beyond IV fluids. I met with the infectious disease team who first complimented me on my excellent cholesterol levels, and then told me I was a very mysterious case. I quickly began losing faith that anyone would find out what was wrong with me.
The final straw was when the new attending physician told me she remembered a case from a few months back where a young man presented with similar unexplained symptoms and remained undiagnosed after weeks of hospital stay. When I asked what had eventually culminated, she replied that she wasn’t sure — that he likely checked himself out, and as far as she knew, hadn’t been readmitted.
I took the story as some type of foreboding sign from the universe to sign myself out from the hospital against medical guidance and return home to the comfort of my bed, even if just for the night. It wasn’t the hospital’s fault that the bloodwork results thus far had shown no indication of disease. The hospital was willing to keep me as a patient and run every test imaginable, but I felt there had to be an alternative.
My mother had taken charge of the situation. Having had severe Lyme disease herself, she was convinced that Lyme was still a possibility even though I had no signs of a tick bite, and my first blood test had returned negative. She scheduled me an appointment with a naturopath, a new M.D., and another infectious disease specialist.
In another week or so, the bloodwork ordered by my naturopath came back positive for Lyme disease. In some regards, it was a huge relief. It wasn’t cancer, it wasn’t psychological, and it wasn’t terminal. It was, however, a complicated case muddled with co-infections that would take much longer to recover from than I was ever anticipating.
If you told me before I became sick that a disease brought on by a tick bite would cause me to be so sick that I was unable to work for over two years, I likely wouldn’t have believed you. I had grown up seeing my mother suffer from complications of the disease, yet had also seen her be able to persevere through years of not feeling well to maintain near perfect attendance at work, raise me, care for family members, and take care of a household. With that in the back of my mind, it seemed that I should be able to do the same. I had always pushed through every obstacle in my life in near record time beforehand, so why not this too?
It took me quite awhile to realize that maybe slowing down was the point of this illness. It was going to force me to stop. It was going to make me take in the journey and not the destination. And it was going to make sure I figured that out no matter what.
Prior to becoming sick, I rushed through a good chunk of my life. I was always trying to get to the next phase as quickly and efficiently as possible because it always seemed to me that the land of golden opportunity lay ahead somewhere in the distance, never at my feet. My rush to get through life probably started young. I was always the “smart girl”, voted “most likely to succeed” and “class perfectionist” as my middle-school superlatives, and told by teachers, parents, and friends that I was destined to make something of myself.
I must say that it’s funny looking back on it all. For someone destined to do “something”, I think I was so busy trying to get there, that I never put much thought into what the “something” was that I actually wanted to do. I graduated from college a year early with an accounting degree, but my heart was never really in it. This much I knew before I got sick, as I had embarked on a personal career transition before I began my position with the investment firm. I had a brief stint working on environmental legislation, contemplated pursuing almost every graduate school major that existed, and in the end of it all, wound up working back in a different sector of the finance world. By the time I had accepted the position with the investment firm, I was exhausted of my own self-induced exploration. I liked the people I worked with and the firm’s entrepreneurial spirit, and it seemed likely this would be where my career would stay for the foreseeable future. While it also seemed that my exploration days were behind me for the time being, little did I know that the biggest soul-searching expedition of my life was right around the corner.
A New Approach
Lyme disease very abruptly made me realize that the type of force I had used to overcome obstacles in my past wasn’t going to work this time. The more I tried to push my body into functioning, the more it pushed back at me and the worse my symptoms would flare — longer episodes of incoherence, more vomiting, hand and leg tremors, headaches, vision problems, and on and on. I needed a new approach, and I needed to figure out what that would be.
The first big lesson in front of me was moderation. Having been accustomed to push myself to my limits constantly, moderation was not my strong suit (and probably still isn’t). It was hard for me to remember on days that my health felt stronger to not do everything I wanted to do all at once. I was eager to exercise, eager to practice my mental acuity, eager to socialize, and eager to get my life back on track. I wanted to get through it all as quickly as possible, but because my body wouldn’t tolerate excessive activity, I was forced to focus on one task at a time at a very slow pace.
I had to pay closer attention to my body than I had ever done before. I was used to more or less taking my health for granted, and assuming my health would cooperate with my life’s schedule. Now, my life’s schedule revolved solely around my body. I couldn’t do anything until my body could function, and I had to learn to accept that. Everything had to be done in moderation, and I tried to begin to care for myself as if I was caring for a loved one — encouraging myself to go slowly, take rests, and have my body remain first priority over all else in my life.
Just as my body pushed back at me when I tried to over-exert myself physically, so did it with regard to negative emotion. The more anger, worry, and fear I felt, the worse my body responded. It was hard for me not to feel angry that at the prime of my life, I was close to completely debilitated with an illness that not many people fully understood. A number of people who were in my life prior to me becoming sick had danced their way out of my life when I hadn’t returned to wellness in a few weeks, which left me feeling completely alienated from the world I once knew. It also wasn’t long before I lost my job due to my inability to work, further stripping me of anything I identified with before becoming sick. I was down to a few key people in my life — mostly a loving boyfriend who helped take care of me during some of the worst of times, and my mother who quickly became my life support.
It seemed that my frustrations, worries, and fears could go on forever, but none of them seemed to help me get to health. I struggled with worries that this illness would deplete my finances and cause me to lose my house and all the things I had worked hard for at a young age. I struggled with the fear that this illness would imprison me forever, and I struggled with facing the fact that even if or when I recovered enough to begin to engage in normal life again, I would be building my life from scratch with new social circles, a new career, and a new way of life.
After running through every possible worry, I made a conscious decision to work on letting it all go. Again, I had to surrender, but in a positive way. There was nothing I could do about the way other people treated me, the fact that I lost my job, or the financial mess that came with illness. I would deal with things as they needed to be dealt with, while focusing most of my energy on what brought me happiness. I made an effort to feel grateful for the days where my health felt stronger and I felt more comfortable in my body; for the days where I could perform simple activities; for the people that consistently stood by me and showed their support; and of course, for my cat, Oliver, who never left my side. While there have certainly been many times where I’ve unraveled and found myself back in states of worry, fear, and frustration for one reason or another, I always come back to gratitude. It has become my foundation for moving forward and my motivation to remain positive on even the most difficult of days.
Ten (Positive) Things
Lyme’s tough, but there are always silver linings. Here are some of the positive things that may not be in my life today if not for Lyme.
Starting my own businesses
Writing and publishing a book
Founding A Different Kind of Work
A deeper understanding of alternative medicine
Yoga, meditation, and sound healing
A more positive and gracious attitude
For more information on me or my other businesses, see my website at www.laurynwendus.com.
Defining My Identity
I had thought about the concept of identity briefly during my period of career exploration because it was then that I realized how much people identify themselves with their profession. Usually the first question someone asks after your name is, “What do you do?” — a complex question to answer if you’re not working. In the past when I was in between jobs, I could still always identify myself with something: I was either volunteering, going to school, or involved in an activity. With Lyme, however, it was a different story. Not only was I jobless, I was stuck in bed, unable to participate in anything other than doctor’s appointments, and could barely function on my own. During the worst stretch of neurological symptoms when my cognitive functioning was compromised, I no longer felt that I could even fulfill the generalized “smart girl” identity I had grown accustomed to most of my life.
Being stripped of most identifications and left contemplating the question, “Who am I?” is tough. “I” was not my sick body nor my malfunctioning mind. My spirit was still present amidst all the illness and chaos, and while this was a comforting soul-level realization, it was also hard to make tangible. I had quickly become known as “the sick girl with Lyme”, and “I have Lyme disease” was the only way I knew how to easily identify myself to others.
At some point during my recovery, I realized my identification with Lyme disease was becoming a major problem. I didn’t want to be “the girl with Lyme”, but honestly didn’t know what else to say I was. I began to contemplate what I would do with my life after Lyme, yet had already explored so many options previously that I didn’t know where to start. My mind also wasn’t the same mind I had before Lyme. It felt as if I was processing information in a brand new way. I no longer had my incredibly accurate “remember-anything-in-a-second” memory, had trouble taking notes via auditory processing, and couldn’t always explain simple concepts verbally in a logical fashion. All that aside, I began to feel that maybe thinking about things differently would offer me some hidden potential, even though I couldn’t quite pinpoint what that would be at the time.
I was given a huge blessing in the midst of my recovery when I found myself suddenly writing with my left hand. While I had previously been only right-handed and did not understand this odd new symptom, I chose to embrace it and found myself drawing sketches and writing children’s rhyme. Writing children’s books soon became a creative outlet for me during my recovery.
In my time spent journaling to explore my new left-handed writing ability, I also began to think more generally about what I wanted to create as my legacy going forward. While I wasn’t sure of the exact context of what would pan out for me as a permanent, full-time career, I knew that above all else, I had a strong desire to pursue the entrepreneurial spirit within me and create businesses that would help to spread a little extra light and laughter in the world.
Everything can change in a moment. Thinking of the major themes throughout my recovery, this is certainly one of them. I began to grow accustomed to my health alternating between periods of seeming normality and severe flare-ups, and had to learn to adapt around it. As someone who liked to plan ahead on everything, this was a drastic shift in mentality for me. I had to learn to live in the present moment and truly go with how I felt. Since my body’s condition could change quickly, my decision-making became based on how my body felt in the present moment, coupled with a bit of intuition.
Even as business ideas and writing began to flow to me, I could only work on things in the context of my health. One day I could feel pulled to work on one project for a few hours, while the next would be something entirely different. And still on some days, the entire day would need to be devoted to rest and recovery. As a previous linear thinker, I used to prefer one project be entirely completed before starting another. Ideally, I thought it would be best if my body could return to health and then I could begin work on my career, social life, etc. However, I came to accept that life is full of blurred lines and that it rarely ever fits neatly into scheduled boxes. I also came to the realization that in order to live past Lyme, I may first have to slowly learn how to live with it.
Living with Lyme
I’ve spent the most recent stage of my recovery (January 2014 – present) trying to learn how to live life with Lyme. I’m to a point where my health allows me to participate in some activity again, but it still remains difficult for me to commit to a schedule ahead of time. In early January, I attempted to try out a part-time job and ended up near bedridden before the end of the first week. Conforming to set hours and pushing my body through periods of not feeling well took me further away from full recovery, and made me feel as if I had hit another roadblock.
In late January, my boyfriend and I parted ways upon his acceptance of a new job in a different city. While we remain close and he continues to show his support, it was extremely difficult losing not only a boyfriend, but also a caretaker and one of the few people I saw on a regular basis. The breakup meant I had also been stripped of yet another identity — I was no longer anyone’s girlfriend. My life seemed wide open on all fronts, and with my health the strongest it had been, I began attempting to have some new life experiences outside the confines of my home and the doctor’s office as my health could tolerate.
I can’t say the process has been smooth sailing. Despite trying to rebuild bits and pieces of life amidst lingering bouts of illness, I’ve hit a number of roadblocks. I can go for a run one day, and my health can spiral downward the next. I have tried to date, but have experienced rejection after rejection. I have tried to find a way to make a living despite having an entirely unpredictable schedule, yet progress has sometimes seemed flooded with one obstacle or another, and my health has made everything move at a very slow pace.
The Road to Living Past Lyme
Experiencing roadblock after roadblock, it has sometimes felt as if I’ve been trapped in a maze with multiple dead ends. I have often found myself needing to surrender to the roadblock in front of me, backtrack, and search for an entirely new road.
The word surrender has evolved in my mind, and has come to take on new meaning throughout my recovery. It’s no longer about defeat, but about having blind faith that something, somehow, will always work out eventually. It’s about surrendering to the fact that I can only do what I can do, and accepting that the rest is out of my control. It’s about surrendering to where I am on the journey, no matter how close or far it may seem from the destination; surrendering to the fact that I’m not quite to the point of living past Lyme, but having faith that one day I will be.
As I work to transition from living with Lyme to living past Lyme, I have begun to establish my professional identity as an innovative entrepreneur. During stretches of stable health, whether it be for 15 minutes or for a few hours, I have slowly but diligently worked to develop the following projects:
- Living Past Lyme – www.livingpastlyme.com – This site was inspired after hearing of others becoming diagnosed with very severe cases of Lyme disease and looking for resources. I wanted to be able to share what I had learned from my experience so it may be of use to others in similar circumstances.
- The Oliver Poons Children’s Brand – www.oliverpoons.com – These children’s stories and related merchandise are the result of my creative writing during Lyme and are based on my lovable cat, Oliver.
- Ribbon Star Press – www.ribbonstarpress.com – Helping other authors publish their own works.
As Malcolm Gladwell put it in his book David and Goliath, “the act of facing overwhelming odds produces greatness and beauty.” I can’t say that I can predict how my life will unfold from this point forward. I can’t tell you that I know at this very moment what the journey will be with any of the above business ventures or exactly how I will navigate around all the roadblocks that appear before me.
I can tell you, however, that I have unyielding faith that in the end, this experience of overwhelming odds will leave me stronger and able to achieve something even greater than I could have ever imagined.
The first book in The Adventures of Oliver Poons series has been a success. The books will become more widely available in retail locations as we continue to grow. We have just begun to expand into larger retailers and distributors, including: Barnes & Noble, Whole Foods Market, Baker & Taylor, and Follett. The business is also expanding to include other character-inspired children’s products. Bright yellow children’s hats, an interactive floor game, and stuffed animals are in the works! Find more information on the Oliver Poons Children’s Brand at www.oliverpoons.com.
Additionally, I founded A Different Kind of Work, a unique platform to help create jobs in a social, community-based fashion. Register for free today to find, share, or combine your skills with other members to create new job opportunities outside the traditional job market.