The Effort

The Effort

            Like many parents who have busy children, I generally do not have time to more than glance at a few headlines in the Sunday paper. The other day, though, a photograph on the front page caught my eye. The picture was linked with an article about Unified Sports, a program that promotes inclusion between students with and without special needs in various sporting events. It showed two teenaged athletes competing in a track event. To the left was a tall, handsome, athletic-looking individual who appeared to be jogging along at a comfortable pace. He was looking over his shoulder, with an encouraging smile, toward a young man at his side. His running partner had special needs and the pair were running together, finishing up a race. The first thing that struck me about the second young man with was the look on his face, which was in stark contrast to that of his partner. While the first runner had a casual relaxed expression, the other young man’s face was held tightly in a grimace. The whole of his body language, at that single moment in time, communicated the true effort that he was expending to propel himself toward the finish line. For the typically developing young man the run looked as if it was a calm stroll on the beach. For the other young man, it seemed as if just completing the 100 meter run took all the focus and determination he could muster. To him it was both a struggle and a great accomplishment, yet both men crossed the finish line….and at the same time.

            I am sure the image first caught my eye because I work with special needs children and I was moved by both young men and what, I presume, they were accomplishing through the program.  The first young man was developing compassion, patience, and acceptance which are gifts that will touch many more lives as he grows older. The second young man was accomplishing something that on the surface seems much simpler. He was rising to a difficult physical challenge, setting a goal, and reaching it. I hope that he, in turn, received something much deeper than the picture could show. I hope that he experienced the pride and satisfaction of having conquered the challenge successfully and that it drives him to continue to set and attain new goals.

             I have not been able to get the image out of my mind since I first saw the paper. After thinking about it for a while, I realized it was because, in it, I saw a clear connection to own my life. The dynamic between the two young men is one I have experienced often during my struggle with Lyme. That picture clearly and wordlessly depicts the distinction between daily life with and without Lyme disease or other chronic illnesses. In most circumstances, I will not complain about the symptoms or the countless obstacles that treatment throws at me, but I DO drag them around with me every day. They DO weigh me down during every waking moment and they certainly make getting through each day more challenging than anyone….except those who have been here…..can ever know.

             As I think about the look of sheer exertion on the face of one of the young runners and the look of casual comfort on the face of his partner, I consider the fact that they had both gone the distance and reached the finish line together. I am in awe of the parallels I see between that race and my own grueling trek through each day. I get up, I work, I parent, I get my children where they need to be, I feed them, do household chores, go to their games and practices, wind down, and maybe watch a little T.V. I am sure most of my friends do the exact same things. We are running the very same distance in the very same race. At the end of the day, our heads probably hit the pillow at around the same time. We all manage to cross the finish line of each busy day and accomplish what we set out to do or what was placed in our path that needed to be done. On the surface, all is equal. If I can get through all of this in the midst of my battle with Lyme disease, then what is the big deal, right? Below the surface, the “big deal” is the colossal difference in the energy expended to accomplish the very same goals. The distinction is simply the effort.  

             I am fully aware of the fact that everyone has bad days. I do too in non-Lyme-related ways. I know that everyone has to put out effort to do all that needs to be accomplished on a daily basis. When you have Lyme, but also when you are going through the cruelty of treatment,  the effort is exponentially larger. Through my Lyme-tinted eyes, it seems that those in the rat race all around me jog somewhat comfortably to the finish line of each day, just as I did before I became sick. Many even have energy left over to add a few more miles. But, I, much like the second young athlete in the picture, move with painful determination towards the end of each day grimacing in exhaustion. Anything extra, anything beyond the clear finish line is just too challenging at this point in my life. I see myself so clearly in that young man’s face.

            In contrast, I also see my pre-Lyme self in the image of the cool, self-assured runner. It’s the “me” that I pretend, somewhat successfully to still be, and the “me” that most people in my life still perceive. Right now, these are two distinct parts of myself: the outside and the inside: the fallacy and the reality. The outside looks comfortable and settled as it rises to the challenges of life. The outside glances confidently and encouragingly at the inside. It pushes the inside along with good natured enthusiasm, prodding it to keep up. That is the fallacy. The inside tries with all its might to move along at the same pace. It uses all its energy to be what the outside expects it to be. It persistently tries to please the outside and the world around it with its efforts. That is the reality. Sometimes it succeeds, sometimes it fails, but it always puts everything it has into the race.

            In this case, I guess a picture really is worth a thousand words.

Strength

Strength

     My husband once told me how he describes me to people who have never met me. He said that he compares me to a combination of Mary Lou Retton (of 1984 Olympic fame) and Linda Hamilton in “The Terminator”. He tells coworkers that I have the lower body of a powerhouse gymnast and the upper body of a machine gun wielding action movie star. Despite the fact that these descriptions date us a bit, I am sure they are meant as a compliment. In my mind, his words conjure up the image of a sort of “herculean” caricature with my face on top. Regardless of the ridiculousness of the image, the concept it clearly brings to mind is strength.

            I can only dream that I was in ever in the same physical shape as either of these remarkable women. (And I do believe he came up with this analogy BEFORE I had three children). Honestly, I think my husband is adding a bit of fantasy to the reality that is his wife. The only similarity I can find between myself and my husband’s imaginary pile of muscle is that I have actually always considered myself to be a very strong person.  You’ve heard of the “strong silent type”. I think that is me in a nut shell. We all know somebody who embodies that description, but the strength in question is not always of the same origin. Personally, I have always thought that I was strong bodied, strong willed and strong spirited but Lyme disease can take even a Retton/Hamilton combination and turn her into a weak, weeping pile of gelatin.

            Most who suffer from Lyme Disease feel constantly weak, physically, mentally, and emotionally and I am no exception.  Add to that the paradox that it is both impossible and completely necessary to work out. According to the current theory, working out helps eradicate the Lyme bacteria because they do not like heat, but aerobic activity is absolutely forbidden until the disease is somehow under control. Weight training is recommended but somewhat limited (for me at least) because of some serious joint issues not to mention unceasing fatigue. So, every time I tried to work out, I would crash. Sometimes I felt as though I couldn’t lift a squirt gun much less the arsenal Linda Hamilton packed in “The Terminator”.  Every time I tried again…and failed again….and a little more strength faded away. 

            Lyme has a way of breaking down other strengths as well.  “Post- exertional Malaise” leads to physical weakness, brain fog leads to mental weakness, the inability to perform at previous levels in all aspects of life leads to psychological weakness, and the constant failures lead to a crumbling spirit. All of this piled on top of one person makes that person feel incredibly fragile.

            I still remember the first time I was referred to as “fragile”. It was at my first meeting with my LLMD (Lyme Literate Medical doctor) and my husband was having a difficult time grasping what this illness and its treatment would do to ourselves and our family. My doctor said “Think of your wife as being incredibly fragile right now”. My husband’s image of me is powerful and strong, not weak and cowering. So, as a result of that profound statement, I felt a combination of relief and embarrassment. Yes, with all that Lyme-induced weakness I guess fragile is a good description and in that instant I knew that my doctor completely understood the enormity of what I was dealing with. For that I felt relief and great gratitude. But fragile connotes something that is very easily broken—and though in some ways I was broken—it had NOT happened easily.

            Therein, I suppose, lies my greatest strength and the strength of all those dealing with Lyme Disease……the strength to persevere….to move forward despite great obstacles, and the strength to get up every day and stand, though wavering. At the worst of this (which I genuinely hope is far behind me), it was so hard to get out of bed that it was akin to having a 400 pound man sitting on me. Every day I would have to find the energy to throw him off of me, and that was just so I could complete my very first task of the day: getting up. The weight of that man was comprised of debilitating illness, nausea, pain, sleeplessness, confusion, fatigue, despair, loneliness and hopelessness. Once my feet, although shakily, hit the ground I would then spend the remainder of each day attempting to dodge a giant wrecking ball. Sometimes I would be successful at evading it, but sometimes it caught me weak and off-guard. Rarely did it knock me down completely, though it seemed hell-bent on doing exactly that.

            If the 400 pound man was comprised of all the internal aspects of Lyme that weighed me down, the wrecking ball embodied life’s external hurdles made 100 times larger and more formidable by illness. It encompassed normally mundane daily tasks, small challenges, lack of energy, lack of understanding, the absence of support, judgmental glares, thoughtless statements, and general ignorance about the destructiveness of this disease. Unfortunately the wrecking ball became exponentially larger by all the doctors who, for years allowed me to suffer because they believed that my symptoms were “livable”, “unremarkable”, and “ordinary”. It was hard enough to throw the 400 pound man off of me every morning, to get out of bed and to work through confusion to get myself to a medical appointment. After years of disappointment it became even more difficult to keep hope alive that this time the wrecking ball would miss. Maybe this time I would not be knocked flat by the very people who I had sought out to help me. So often, though, I did throw the man off, to make it to a doctor who then mowed me down again with the destruction of a callous statement.

            The Lyme experience will teach you that strength is getting up after you have been pummeled YET AGAIN, and continuing to fight because you know (but cannot “prove”) that something is seriously wrong. It is finding a way to reach out with hope and faith when you have been told for the thousandth time that “it” is all in your head. It is pulling yourself up enough times to find a solution, and fighting your way through the hell that is Lyme treatment. It is believing that the weight will be removed, the attacks will cease and the proverbial light at the end of the tunnel will be revealed. Come to think of it, my husband may be right. Maybe I am Retton/Hamilton after all.

 

 

Anxiety

Freak Out Fridays

            Pavlov would have had a field day with me and, more specifically, my Lyme-induced anxiety. My anxiety is like the hungry dogs’ salivation response in the famous stimulus-response experiment. It has been deeply conditioned over time as the result of the overwhelming nature of Lyme disease.

            There is never a “good” time to contract a mind numbing case of neurological Lyme disease, but if there is a really “bad” time, I think it has to be in your 30s and 40s. These are the absolute busiest years of life. The balance of work, marriage, family, socialization and caretaking responsibilities can be challenging to even the healthiest people during those years. It is a time that we anticipate that our health will be adequate to support all the responsibility that we take on. If we are lucky, it is, but if not….all hell breaks loose.  Because most of our peers fall into the “lucky” category, they have no basis to understand or empathize with an illness that slows the forward progress of life.

            When you have neurological Lyme disease it is hard enough to keep the internal chaos at bay, forget about having to handle the outside world too. If these difficulties were on a list of symptoms, they would be called “processing” and “executive functioning” deficits. In real life these symptoms translate to being extremely confused by information coming in from the outside, and not being able to organize squat. (And there is a whole lot of “squat” to organize just to get through a day for most people). An ordinary busy productive life becomes entirely too overwhelming. Keeping up with the expected pace while dealing with Lyme and Lyme treatment is an exercise in absolute futility. To those who do not suffer from chronic illness, it may seem unreasonable to believe that anyone could possibly struggle so greatly with the small tasks we all take for granted. After all, Lyme is completely invisible and difficult to “prove”….. even to those with a medical degree. The world does not slow down to allow you to catch your breath. It just keeps rolling and if you can’t keep up with the pace, it flattens you in its' wake.

       I have three children who, at the height of my struggle, were young enough to still need a lot of care but old enough to be super busy with extra-curricular activities. When I first saw my LLMD and explained this, she called it not an “ideal” situation for healing because there is no time to rest. It’s not only the lack of time to rest, but the sheer amount of extra energy their activities required of me that made it tough to heal. It’s not as though I had to run around on the soccer field with them, but it sure felt like I had. I had absolutely no energy, first because of the Lyme itself and then because of the treatment. Effective Lyme treatment kills the bacteria but it also overloads the body with the Lyme waste, so the medicines actually exacerbate the symptoms until the body can clear all the bugs. This is called a “herxheimer” reaction, or “herx” and it is a major hurdle to healing.

      No energy, constant “herxing”, difficulty processing and the complete inability to organize leads to a very inefficient stressed out mother. Weekend planning required the strategy and reasoning skills that I did not possess. It’s pretty simple math, 3 kids clearly outnumber 2 parents. Add in multiple sports, play dates, sleep overs, religious education classes, and birthday parties for each and life spirals out of control. With each activity there were start times, end times, field directions, snacks to bring, drop off locations and pick up locations to remember. Just trying to figure out the weekly puzzle rattled my brain: forget about finding the energy to carry out the plan. Maybe you can imagine that by Monday I was capable ONLY of quietly drawing breath.

            Some consider anxiety to be a direct symptom caused by Lyme bacteria. In my case, I know it was conditioned by the other Lyme symptoms.  Every weekend was a battlefield of stress that I had no ammunition to handle. I was living in a world that I could not tolerate, yet had no option to escape. That is exactly how my anxiety was conditioned, just as in the case Pavlov's famous experiment. It got to the point where my anxiety rose a bit with each passing weekday, culminating in sheer panic by Friday. My body knew that it did not have the energy reserve to survive the weekend without sacrificing a little more of my health. My mind understood the ramifications of needing to do it anyway. In Pavlov’s case: the bell triggered saliva but in my case the upcoming weekend triggered panic. An endless string of questions and self-doubt invaded my brain: “Where do I have to be?, What do I have to do? HOW am I ever going to survive this? I CANNOT DO THIS.”

            It may seem irrational to have such severe anxiety about the impending weekend, but in my case and in the case of most who suffer from Lyme disease, it’s really not. It’s like sending a naked unarmed soldier into active combat. My hope is that sharing my story will help others understand the difference between “irrational” (aka “crazy”) behavior and completely understandable behavior. The difference lies in the absolutely rational reason underlying that behavior. In the case of Lyme disease: ILLNESS makes the world an overwhelming place and having to try to keep up with the world in spite of illness sabotages the healing process. It’s your classic “vicious cycle”. Call me crazy, but I think the only sane way to react to such a situation is with a little anxiety.

               

The Last Post; First

Light Bulb Moment

 

 

            An epiphany can take your breath away. It can hit you out of nowhere whether you are ready or not. That's exactly what happened to me yesterday in a completely unexpected place.... the M&M factory in Times Square, New York City. I was standing in the middle of the second level, at the top of the escalator where it seemed as if hundreds of people were trying to exit at any given moment----pushing and shoving their way to any one of the many colorful destinations and speaking languages from all over the world. I was waiting, somewhat anxiously, for my 11 year old daughter to fill her bag with the perfect mix of rainbow-colored candy disks. "Meet me right back here", I told her and though she was a stone's throw away, in all that chaos I did not take my eyes off of her for a second.

 

            I took her (surprisingly heavy) bag of candy-coated chocolate and her tie-dye shirt toward the check out and sent my daughter to wait with her siblings, cousin, and Aunt. For the next 25 minutes I participated in the contact-sport that is waiting in line in a major retail attraction in the heart NYC. When I finally paid, I went back to find my family, who had been sitting on the heating vents by the large windows overlooking the street, taking a well deserved break from the craziness of the day. And that's when it happened, my epiphany, my light bulb moment, an instant of rare but total clarity in my Lyme riddled world. What I understood at that moment was a total surprise to me. As I looked out over the city I realized that I was feeling well, that I was doing better, and that the Lyme treatment, as hideous and life-altering as it was, had worked.

             I was amazed. Amazed both because I had this revelation in such an unexpected place but even more amazed because it didn't occur to me that the treatment had worked until that very moment. I had been off all antibiotics for 2 months, but because I am still dealing with other autoimmune issues, I couldn't really determine if the Lyme treatment had been successful.  I couldn't be certain, that is, until I stared down at Times Square from that particular spot yesterday.

 

            In this case...location was everything. Two summers ago we had all taken a similar end-of-the-summer family day trip from Connecticut to NYC and yesterday was the first time I had been back since. I had forgotten how silently and internally miserable that trip had been because of how sick I really was. Around that time every day was silently miserable and every day was filled with the frustration of suffering with an as-yet-undetermined chronic and debilitating illness. Although I had forgotten the seemingly unimportant moment, I remembered that two years ago I sat on that very same heating vent...wondering how I was ever going to find the energy to stand back up. Never mind mustering the energy to collect my kids, keep them close at my side, walk at a city pace, and take a subway a train and a car ride to get back home. I had forgotten how the business of the city and the noises of the store had overwhelmed me and made me dizzy, nauseous, and confused. Yesterday the memory came crashing back because my sister in law had chosen to sit in the precise location that would stir the recollection. It was a moment, I now realize, that I needed to recall so that I could finally understand how far I had come in those two years.

            Until yesterday, I really wasn't certain where I was in the healing process. There are still so many things remain uncertain about my health, things that still plague me and nag at me and make me wonder if I will ever feel truly healthy. I still get tired, my mind is still foggy, my sinus infections have returned, my frozen shoulder isn't healed, and I still cannot tolerate aerobic activity. I still need to watch my diet like a hawk, I can't tolerate alcohol and I can no longer carry a full workload and still manage my house and my kids. In the monotony of my day to day routine, these are the things that I was still roped in to focusing on: the "still don'ts" and the "still can'ts". What I learned yesterday is that sometimes you have to walk away from your routine to see your situation a bit more clearly. A routine can be comfortable, but it also allows us to wedge ourselves too tightly into our patterns...whether healthy or not. Change...even if it is small and fleeting...gives us the opportunity to see the world from a different perspective. A day trip to New York City is exactly the change in perspective this country girl needed. It reminds me of how, when you have small children, you don't notice them changing as they grow because you see them every day. Their growth is so minute on a daily basis that it goes unnoticed and unappreciated over time. Unnoticed, that is, until Great Aunt Hildie, who hasn't seen them in a year, comes to visit. Though, as parents, we know our children intimately, it is always Great Aunt Hildie who sees the physical transformation with clarity.

            Yesterday's experience was like a visit from Great Aunt Hildie, because in a split second I felt the clarity of how far I had come. In an instant my internal mantra changed from "but, I still can't..." to "Hey! Hold on a second, Maybe I Can". Even though we had woken up early, taken a long train ride, and been in the city for hours already, I realized that I still had energy and focus. I was not confused by the onslaught of sights, smells, movements and noises as I had been during my previous trip. I could carry a conversation with my sister-in-law while filtering out all the extraneous noises around me. Best of all, I was enjoying myself. A sense of contentment had replaced the constant fatigue and anxiety that were symptomatic of my long battle with Lyme disease. I was not only able to tolerate the day, but actually feel as if I was thriving in arguably the most sensory-overwhelming and exhausting place on earth. If you have ever had Lyme, you know how difficult it is to multi-task in the quiet of your own home, forget about functioning in such a fast-paced "city that never sleeps" kind of place. You may also understand why being able to successfully function in such an environment would be eye opening and encouraging. Yesterday I learned a life changing lesson. I realized that progress is not synonymous with perfection and that you can experience the process of healing even if you are not yet fully healed. The still-can'ts may be a permanent fixture in my life, but one thing is for sure: looking down for a second time on the streets of New York City taught me for certain that things are actually looking up.

 

Climbing Mount Healing

Climbing “Mount Healing”

            I think most people would agree that Lyme disease does exist, in some form or another. The question, however, is where does the Lyme infection go when it is not diagnosed or treated in a timely fashion? What happens to those of us who didn’t have a rash or clear symptoms after a bite or whose illness was not accurately identified for many years? What happens if the immune system does not fight the Lyme effectively? What happens is chronic Lyme disease and dealing with chronic Lyme is a hellish experience, from the struggle to be diagnosed, to the quest be taken seriously, and through the journey to be healed.

            When Lyme presents in a chronic fashion, there is not a single moment of sudden awareness that sickness has overtaken us. There is a slow but tremendously deep and confusing sinking into the pits of this very misunderstood illness. Even once the diagnosis is made and the treatment begun, there is not a clear path to “healing”. Improvement is not expected after 3 weeks of antibiotics and recovery often takes many years. Lyme bacteria are extremely intelligent, and as a result, healing is a slow and exhausting crawl out of the pit. The crawl is full of temporary peaks and enormous valleys. There are months of pure darkness and moments where some hope can be found. There is definitely no map. In the end it is a process and it is difficult and confusing to survive. The illness itself and the struggle to heal have far reaching effects, involving all parts of a person and impacting most aspects of their life. Lyme certainly touches, and often comes close to destroying a person emotionally, physically, financially, professionally, psychologically, and cognitively. Take it from me, I know, I have been there. I have spent the past several years climbing Mount Healing, searching for a time when I feel “better” or “back to normal”, and when I can finally get on with my life.

             The peak of Mount Healing is elusive. There is just not enough definitive information out there to explain this disease or how to effectively treat it. Each person’s trek to the peak is different, and they each have to blaze their own unique path. Sometimes you climb high, but can never manage to reach the peak. In that case you have to find acceptance in the place that you land.  

      From my experience, there is much more controversy than consensus in the medical and scientific communities, which has a direct impact on patient care. A true understanding of the disease is a long way off, but that is what I have craved as I find my own way through it: understanding. Understanding about what I am experiencing, understanding about what to do about it, and understanding and support from others as I continue to fight. It’s very difficult to find support when neither you, nor the medical community can adequately explain what is happening. When my own attempts to explain fell on deaf ears or were misunderstood, I would often search the Internet for information, personal stories, answers, or direction, and I found a wealth of resources and support. I also found that the information, though truthful and necessary, rarely provided me with much hope. There are posts about the specifics of traditional treatment, the struggle to be diagnosed, the seemingly endless lists of vague symptoms attributed to Lyme and each of the associated co-infections, and the many additional difficulties caused by the treatments themselves. There is endless information about alternative treatments, special diets, and therapies. It is all very important, but I was often left wondering if what I was feeling, given the situation was “normal” and “expected” and more importantly if it would ever end.

            As a result of trying to figure it all out without getting too bogged down or disheartened by others’ experiences, I started writing. That writing became what is now a series of essays that I collectively call “Climbing Mount Healing”. They are not a straightforward chronicle of my total Lyme journey, because “straightforward” and “chronic illness” are anything but synonymous. These essays deeply explore individual aspects of treatment and the toll taken by the hard work of healing. It is a crazy ride, and each day is different and unexpected on that road, making you wonder if you are heading up the hill or going back down into the pit.  I have tried to describe what the process has been like for me by putting a slightly humorous or at least somewhat positive spin on some very awful days, feelings, or situations. Sometimes, I couldn’t quite muster the energy to find the good in any of this but always, as I wrote, I would discover something new about myself as a result of what I was going through. It is my hope that these essays will ring true for others going through life with Lyme disease and that you can find some kinship and understanding here. Even more than that, though, I hope that these essays reach those who have a loved one who is suffering. I hope that my words can paint a picture that brings a little clarity to those who do not suffer from Chronic Lyme, but are trying to help someone who does. That clarity may help you realize how desperately your loved one needs your help and the best ways to offer your support. The more you can try understand, the faster they will reach the peak.