A LYMESPOUSE STORY – (draft)
Things were going great for us – in just about every way possible.
My fiancée (herein referred to as “Elle”) and I met in 1997. We’ve had challenging times like most couples, except with regards to our relationship; we’ve always been very, very happy together. Our challenges have been limited to teens, time, sometimes money, and occasional illness/surgeries. We simply refuse to have relationship “drama,” a position that has worked well for us.
Through even a tough economy, I have had steady work doing something I really enjoy. Elle and I started a band in 2009, and by the end of 2010, in just one year’s time, we had performed over 40 successful shows… not bad for a fledgling group! Elle does an amazing job on stage, and was growing stronger in this new endeavor with each performance.
Our two youngest children were happy and healthy, and we considered our lives to be hectic, but full and very gratifying, and we certainly were grateful for all we’ve been able to accomplish.
INFECTION AND IGNORANCE
In 2010, during our summer shows, Elle started having some strange sensations in the big toe of each foot… nerve-type pain that was completely unexplained. Then after one show, she developed such a painful problem in her hip that after we made the hour drive home, we went straight to the Emergency Room. After several injections, and still really unable to walk, we were sent home. Within a few days, the pain mysteriously resolved.
Shortly after these events, the tell-tale sign of Lyme Disease – the classic Erythema Migrans rash – appeared on her thigh. Knowing that the rash can sometimes appear much later than the bite, but not having ever found the tick itself, we both started to believe there was a correlation.
It was from that point on that everything went downhill.
She visited her primary doctor, (who was already very bad at helping her with the nerve and hip pain), and we were both disgusted with her complete misconceptions about Lyme. We live in upstate New York, and if you review the CDC’s map for 2010, we’re very much capable of encountering Lyme here. This doctor was clueless, and if most doctors up here are this clueless, then the map is probably quite inaccurate –there’s likely a great many cases up here going undiagnosed.
So after this doctor looked at the rash itself, in person, and proclaimed as ignorant as a loaf of moldy bread, “That can’t be Lyme, we just don’t have it in this area…” we knew we were in some trouble. We know with 100% certainty that we have the Lyme-carrying deer ticks right here in our own back yard. How? I have had the rash before, and our young son has as well. We were both diagnosed with Lyme, and I even tested positive on a Western Blot. However, we were both treated properly and successfully.
However, quite inexplicably, with this doctor the possibility of Lyme was somehow “negligible.” So, despite the clear and obvious Lyme rash (which we consider lucky to have both seen AND taken pictures of), Elle literally had to DEMAND a prescription for antibiotics from this doctor. Finally, grudgingly, the doctor at least agreed to a course of Doxy during this appointment. Surprisingly the doctor refused to order any tests (not that the tests are anything to base diagnosis upon anyway…). It’s ‘funny’ how Lyme Ignorant doctors will stand by their practically worthless “tests,” especially when they come back negative and thereby denying you treatment, and yet still not request them when there’s a new case. But I digress…
Throughout process, Elle was made to feel inferior, somewhat like a hypochondriac, and certainly less “worthy” of proper care.
The final blow came when Elle arrived at the pharmacy later that day, only to be told the prescription had been called in for Amoxy instead of the agreed-upon Doxy.
Now, we know that Amoxy can be used to treat Lyme, but these days Doxy is certainly the most commonly prescribed antibiotic, and the Lyme Literate MD that we eventually were able to see (more on this later) has since indicated to us that Amoxy is generally what they give children who may have been exposed to Lyme. We consider this the true point of failure, that would then force us on an awful journey.
After the “magic 21 days” on Amoxy, Elle was to be considered “cured.” This, of course, turned out to be entirely false. You see, our family just had become the poster child for an important Lyme statistic, as explained to us by our Lyme Literate MD: Two out of three people treated for Lyme will resolve, while one will go on to have further infection and/or co-infections, and some pretty significant complications.
The nightmare truly went into full production after her course of Amoxy was finished. In addition to an increase in the toe nerve pain and hip issues, there was now a whole new cornucopia of symptoms for Elle to tolerate. Incredible, debilitating fatigue – like nothing either of us had ever seen or experienced. Inability to sleep through the night, regardless of the exhaustion she faced. All of the standard pain associated with Fibromyalgia. Odd, distracting and/or painful skin sensations (paresthesias). Unusual and unexpected feelings of rage. The cognitive issues commonly known as “Lyme Fog.” Headaches – Elle NEVER got headaches before this. Unpredictable menstruation – Elle has no pre-menopausal symptoms, all her hormone levels tested normal, and up to this point she had always been like clockwork. The list continued to grow, and rapidly.
Two other lists continued to grow, as well: Elle’s list of different doctors, and her list of medications.
In addition to the clearly incompetent primary care physician, there was now an orthopedic surgeon, two rheumatologists, and more, making entries into her medical records.
The orthopedic surgeon attempted epidural steroid injections, in the hopes of blocking the nerve pain in the toes. This made sense to us; after all, not EVERYTHING is Lyme (please remember this, radical Lyme advocates, and don’t hurt your own cause...), and this surgeon did a great job at explaining the entire situation. Alas, this turned out to be ineffective, and in fact the doctor even had trouble replicating/intensifying the pain using the injection site, as she had anticipated. She found this very odd, and of course the steroids made no difference, because the pain had nothing to do with any root nerve stimulation or compression. Nonetheless, this particular doctor expressed interest in learning more about Lyme and wanted us to follow up in the event that we found a solution. At least ONE doctor was interested, and willing to learn, right?
The two rheumatologists both stood by their good old useless standby (non)diagnosis, “Fibromyalgia”, each refusing to pursue the chance that it was a Lyme infection – even though that might lead to a cure while Fibro remains relatively untreatable, and certainly has no “cure” – since no cause is known. It’s just a description of symptoms, a syndrome… not an actual disease. But they’d rather call Elle’s condition THAT instead. Go figure.
Each of these doctors tried their best in the context of their specialty, but at the same time refused to listen to our insistence that this was Lyme disease and at least try to treat the patient, not just the symptoms or the tests. We know each might be an expert in their field, but as a whole, they all failed their patient, miserably. And in medicine, results kinda matter, I would think.
They prescribed Lyrica for pain; Vitamin D and Iron supplements; Norco for breakthrough pain; Requip for restless leg syndrome; more drugs for “depression.” The list goes on. One prescription, literally, was to “go home and get rest, and exercise.” This rheumatologist clearly didn’t understand what he was asking. He could not see Elle’s true condition, instead being blinded by what he “knew” to be facts about Lyme.
And of course they ALL suggested that Elle see a psychologist, to help with her “depression” and these “other issues.”
Now, there’s nothing like being told that you’re crazy to make you feel like even less of a patient – less of a human being – no matter that you have real symptoms. There was very little that made us angrier than this suggestion that Elle seek out a “mental health professional.” The absurdity of that suggestion is just profound… as you’ll learn shortly.
And so, I’ve watched, helpless, as this disease methodically took away the person I knew, and left behind a debilitated, depressed shell of a woman.
WHO IS THIS PERSON?
I think at this point, it’s important to explain who this woman really is – or, WAS. This is the only way to drive home how dramatically Lyme has invaded and affected our family.
We’re talking here about a woman that is no stranger to pain. In her early years, she was involved in a serious car accident, and also gave birth to three healthy children, with out ANY pain management whatsoever. I’ve been there for her myself through two significant surgeries, and I was there for the birth of our own two children, again, without any pain medications whatsoever. I’ve seen firsthand how she deals with pain, and she’s better at it than I could ever be. Even doctors have been impressed with how well she deals with pain, surprised that she did not ask for medications for relief.
This is a person that often refused to complain about pain – instead she always seemed to work through it. Every. Single. Time. She certainly has always been very much my hero on that basis alone; she’s no wimp. We would walk 3-4 miles, three days a week, and she was always faster than me. She was always in the garden or the flower beds in the yard, making huge transformations in short periods of time. She was always working on some project – repainting or wallpapering a room, moving things around, or canning, making applesauce, or doing crafts with the kids. At only 40, she was always full of energy.
And more recently, being with her on stage together with the band, entertaining people and having fun, is truly an honor for me. She is a natural up there, and it’s difficult to tell that she’s never had any formal training. She loves singing, and takes it seriously. Her marketing skills and ability to get us shows through sheer will and diligence paid off so early that for a while, our world was spinning a bit – there were times when we’d do three shows in one week, with complete performance rig. Mind you, for each show, a “complete performance rig” means a three hour set up period (hauling in PA gear, instruments, and lighting), a four hour show, and one hour or so to tear it all down and load out. And often, we were at least an hour’s drive away from home when it was over. Yet she worked just as hard as everyone else, this “Rocker Mommy.” She still surprises me at every show, with a natural talent and sense of melody, and even more so NOW, since I know what she’s going through as she stands there.
Elle is not an “emotional wimp,” either. After some tremendously painful experiences in her past, Elle was always able to maintain her sense of self, and focus on what mattered most. “Don’t worry until it’s time to worry” was always her motto, and it was amazing to see her maintain that stance in the face of some truly scary times – including one in which her ex-husband nearly caused the death of both her and one of her children.
I did what I could, but I couldn’t get these “Medical Experts” to wake up to this simple fact: This is a strong, stable, intelligent woman, who does what needs to be done, and without help from a “mental health professional.” She’s not one to make things up for sympathy, nor is she trying to “scam the system.”
of this is a big part of what attracted me to her, when we met back in 1997.
It’s been almost 15 years; I trust my knowledge of who this person is. Or, I
should say, who she was.
WHO ARE WE TALKING ABOUT NOW?
So, I’ve told you “who she was.” She was practically unstoppable. But not now. No; now, just a year later, things are just a little different.
Now, she wakes up every day with something new trying to hold her back. Now her days are planned around eating at the right times so her meds don’t make her sick, and making decisions early about where she will invest what little energy she has for the day. She’ll make decisions before she’s even out of bed, decisions about how and when she’ll need to be back into that very same bed based on what she needs to get done. She’ll do her best and expend energy to set aside any guilt, in order to move forward.
This year, the gardens are filled with weeds; there were no seeds put in the ground this year, to grow vegetables for her to preserve or serve to her family, or flowers to beautify the home she loves.
This year, we eat out much more than we used to; there is no “momma chicken” or other wonderful home-cooked meals; there’s little time spent with the kids teaching them how to work and be little helpers in the kitchen. This year, daddy has tried to assume that role, when he can.
This year, we’ve performed half as many shows, and doing two in one week is practically out of the question. This year, it takes three days to recover from a show. The “hot” and sexy gig outfits don’t fit quite the same, and there’s just a hint of a little less energy from Elle on stage. In watching and listening to her now, in addition to saying “It’s difficult to tell that she’s never had any formal training”, we can now add, “And you’d never know she’s in such a tremendous amounts of pain.” But it’s there, just under the surface; I may be the only one that can see it, because she hides it so well… it IS there, like a house guest that doesn’t know they’ve overstayed their welcome.
This year, there were no summer parties at our house. No setting up the deck, firing up the grill, cranking up the outdoor speakers and lighting up the fire pit. No canopy covering a live band late into the warm summer evening, no bar flowing freely to our guests.
This year, there were no decorations for Halloween. There will be no aroma of Thanksgiving or Christmas dinners filling our home, either. We will get through the holidays on the charity and celebrations of others, because this year, she’s just not going to be up to the task. If all goes well, we’re prepared to go out and cut our own tree and decorate for Christmas… but we’re also prepared for not being able to do so.
This year, there was no exercise or workout regimen. This year, instead of losing another 20 pounds like the prior year, the 20 that were lost would be gained back. And then another 20 would be added, as a result of being barely able to move, combined with the effects of all the medications.
This year, there were no walks together. There will be fewer moments of intimacy, and they will be much shorter. There will be fewer romantic or lusty evenings, with candles burning and moments shared and remembered between two people in love.
This year, there will be no wedding as we had planned, and there will be no honeymoon. That’s right, Lyme took those things away too. We’re now hoping 2012 is our year, but as with all things Lyme, it’s a “wait and see” game.
Some days she will have enough energy to do all the things she wants; other days will be “bed and couch” days. These days, she guards her spoons carefully.
MY LYMESPOUSE EXPERIENCE
Elle never knows what each day will bring, and so, as LymeSpouse, neither do I. It has forced me to be more flexible than I ever thought I could be. It has also shown me how surprisingly inflexible I can be –and how lonely I can be as a result.
You see, Elle’s story is all too common. You can read similar stories on any Lyme bulletin board online. The ignorant doctors, the constant useless medications for misdiagnosed conditions, the pain, the resulting depression that everyone will be quick to focus on as a “cause” rather than a “result.” Yes, there are indeed quite a few support groups for those actually infected with Lyme Disease, who literally carry the spirochete in their bodies.
But the story that I believe remains untold, except as one-off posts of desperation on some of the Lyme websites, is the story of the “Lyme Spouse” – the person that is “blessed” to not be infected – but instead now as the “opportunity” to sit helplessly and watch their loved one being lowered slowly into the flames of Lyme Hell.
And while I’m sure the Lyme community tries to welcome the spouses/caregivers of Lyme patients, their perspective to me will always be biased towards the Lyme patient. This certainly is expected, and I don’t hold a single grudge against the Lyme community, but it doesn’t solve a fundamental problem.
Perhaps it’s my own perception – my own discomfort in expressing myself to a community already in a great deal of pain. Regardless, I speculate that many a LymeSpouse may easily feel that they are approaching a community that is already literally infected with something that is causing them a great deal of agony, and then asking them to be understanding towards someone who’s not infected... who’s “symptoms” seem very much inferior.
But the need for help becomes greater, so the LymeSpouse attempts to set aside the feeling that they are just being more of a burden on an already burdened community. The LymeSpouse may take to a bulletin board to try and express their own experience of heartache, pain, depression, and certainly anger, to the Lyme community… and the answer (real, implied or simply perceived) might just be “Suck it up; you’re not the one going through what [the Lyme patient] is dealing with. Just be a good spouse!” I doubt anyone has ever said that to a Lyme Spouse, but I’ve seen some posts that come close. That’s scary, because it quickly invalidates every feeling that goes with being a LymeSpouse.
The LymeSpouse may even have already had some confirmation of this, just from their own infected loved one. After all, it is their loved one who’s sick, not them… so that’s where the attention gets focused, right? What’s the LymeSpouse really have to complain about?
I think that’s how I would describe a core part of my experience. I truly did put it upon myself to “not be selfish”, to ignore my feelings because Elle was hurting So Much More. When my needs broke through, I’d wait until I was alone, usually in the car, to vent… sometimes yelling pretty damned loud. By then it was too late; those pent-up feelings had done some damage to my psyche already.
That answer, that “solution” of “keeping it all under wraps”, of course, is unacceptable in the real world. You can’t just ignore those things, because they multiply like untreated Lyme bacteria.
Just because you have Lyme Disease does not make you an expert on what it’s like to be the SPOUSE of a Lyme patient… nor should you try to be that expert. The typical LymeSpouse could inevitably make the infected Lyme community angry, because the LymeSpouse is going to be unable to find the right kind of support for their anger, fear, frustration, and more. And that’s unfortunate, because the LymeSpouse can play a critical role in the care and recovery of the person that’s actually infected. Take care of the LymeSpouse, and you’ll have gained a substantial partner in the small army you need to fight this disease – an empowered person with pure intentions, who’s on the PATIENT’S side when most everyone else disagrees or doesn’t understand.
That lack of support… That’s the situation I was in – and admittedly, still find myself in, at times.
As Elle began her decent into the Lyme pit, I was working full time, self-employed. That’s already a bit of stress, especially when our overall economy is so tentative. I was also trying to be a good father, and do the things “the man is supposed to do” – take care of the home, protect my family, and more. Being that I’m not in the best shape, my own body sometimes complains very loudly. Thankfully, to date, I myself have not been seriously ill. I’m not sure what we’d do in that case – Elle and the kids have health insurance, I do not. All of this leads to Stress, with a capital S.
In addition to seeking help for Elle through research and study of medical protocol, scam websites with “holistic cures” which hold very little credibility and more (all of which quickly destroyed my productivity – sometimes only getting in 2-3 hours of work per WEEK), I’d occasionally search for help for my own as yet unrecognized feelings… I’d search for something that would tell me, “you’re doing okay, you’re on the right track, certain feelings are to be expected when you’re the caregiver…” When my search for support came up fairly empty, I was left wondering if the techniques for handling my situation were just too obvious for anyone to mention online, so I stopped doing those searches and decided I was on my own. I was left to deal with it in silence, and figured I must be doing okay.
Don’t get me wrong – I was not “alone.” We all have family and friends who offer help or a “compassionate ear.” They simply don’t know what they’re talking about; they don’t know what they’re saying. And as a LymeSpouse, I’d say after four or five times, you get sick of talking about, trying to help people understand. You want to just say, “Go watch the f#$king movie, or do the online research I’ve done, if you really care.” Do it yourself, because I’m… tired.
And let me make one thing perfectly clear: Hearing the superficial “If there’s anything we can do to help…” statement from friends and relatives is about as abrasive to a LymeSpouse as the flippant “Well, you don’t LOOK sick” statement is to the Lyme patient. Because believe me, I know that the minute I start TELLING you exactly “What you can do to help,” you’re going to want to find the nearest corner and assume a fetal position. I don’t have the energy explain to you why we can’t just “go get treatment”, let alone explain to you in polite terms why you should be able to help right now, without asking me how. Just show up at my house, you’ll know exactly what to do the minute you walk in the door, trust me.
Anyway, I think my experience, like most, can be summarized as a set of “turning points.” All but the last of which were progressively more and more negative.
TURNING POINT: DISCOVERING WHAT LYME REALLY MEANS
I’m not sure at what point Elle’s situation became quite so clear to me. I know the movie “Under Our Skin” helped a lot. Now, I feel it’s important to stop here, and note that Elle and I, we’re not “super radicals” over any specific topics. We don’t “jump on bandwagons” or shout things from rooftops. It’s not that we’re not passionate about anything, only that when we look around the world and see so many radicals doing their own kind of harm in the name of what they call “good,” it bothers us a lot. Elle and I both take a very measured approach, and try to remember there are two sides to every story. Even with Lyme. We try to form our position on things based on more than just emotions. We know that movies, books, articles, and yes, even medical protocols can be made to expose some other party as “the bad guy” and carry hidden agendas. We try to make facts win over emotions when we can.
In this case, we have every reason to believe what’s presented in Under Our Skin, because as measured “middle ground” people, we’ve lived it. Right now, we have no reason to believe that the movie itself is anything other than a genuine attempt to shed light on a despicable situation, because after seeing it, and doing the research, and living it, we can’t find any holes. There appear to be no exaggerations, blatant untruths, or “artistic license” taken. The status of the medical community with regards to Lyme is abysmal, and every doctor should be embarassed by the behavior of their peers on this.
And while we’re on the subject of that documentary, it’s interesting to note that one of the couples that appear in the movie eventually split up… even after the Lyme patient found treatment and was on her way to recovery. One can only speculate as to the reason, of course, but my guess is, the Lyme patient’s husband was an “untreated LymeSpouse.” This comes into play a little later, here.
Moving on… So, seeing this movie struck some new terror in me; this was the first point at which I truly realized that we were going to be in trouble. This, and the resources I’d come across online. My own downhill progression probably started around this time.
Now, I will never, in my life, say that being a LymeSpouse is “as bad” as actually having Lyme Disease. I will say that it is very difficult; it’s lonely, it’s scary, it’s painful, and yes, it’s even debilitating on some levels. It’s like being infected with something that, if not recognized, can consume you the same as Lyme. It’s like Lyme, but different, of course.
TURNING POINT: REALIZING HOW HELPLESS YOU REALLY ARE
When LymeSpouse symptoms start to affect you and your family, they don’t do it quickly, like a broken arm or even the common cold. No, they do so much more slowly, much like Lyme Disease itself. Instead of knocking you down fast, they take a little from you each day, stealing parts of you away, behind your back. They leaving in their place emotions and responses that are “not you” but are now unpleasantly “yours.”
That’s exactly what started happening to me.
As big and imposing as I am (5’ 6”, 275 pounds), I’m pretty much a puddle of mush. I’m a musician, and basically a true romantic; I am a man, yet I do cry. I hate the word “hate.” I’ve only ever been in two fights in my life, one that I won, and one that I lost, miserably. Since those middle school and high school days, I’d much rather avoid confrontation or talk my way out of something than ever result to violence. While I was extremely introverted as a kid, I don’t recall being constantly, outwardly angry at the world, all the time.
And yet, the way Lyme “infected” our family, that’s pretty much exactly where I ended up. Not violent in the sense that I’d be physically abusive – I’d never hurt Elle or my children – but there came into existence this pent-up rage at the entire situation, and absolutely no outlet, no way to decompress.
I became very short with my two innocent little children, and I became distant and terse with Elle – the person I know to be “my everything.” As much as I knew I cared, I couldn’t STAND to care anymore, because once I couldn’t DENY the disease any more – Elle was most certainly very sick – a lot of anger had taken over. I was going through the motions, but I wasn’t putting any real care or love into it. I was numb; I was sick of caring, because when the caring becomes one-sided, it really stops working for anybody. It seems obvious to say, but is rarely said: Someone who does all the caring and cannot receive the care to which they have become accustomed will begin to feel truly marginalized and “used” – just as someone who can only receive care and can give none will quickly become marginalized and feel like nothing more than a burden. Everyone must give and receive care in order for there to be balance; we were as unbalanced as a see-saw with only one rider.
I was feeling ever more weak, alone, helpless, and worn down. Truly deeply depressed, for the first time in my life. My fiancee, my kids, even my family and my friends and my clients – I love all these people with all my heart; I just didn’t know how to do it all at once anymore, and was downright tired and angry from doing it alone. I was confused about loving so many people and yet hating everything about my life.
On one particular Saturday, with Elle once again on the couch, it became clear that I would have to abandon any plans or hope of tackling my ever-growing pile of work, and instead, I’d be forced to take the kids for the day – “yet again.” My needs and pressures would have to wait, “yet again.” And while I knew it would be a good day for them at a local arts festival, and this would be an opportunity to spend some quality time with them, my mind was, unfortunately, entirely somewhere else.
I was consumed by anger, resentment, and frustration. I dressed my little girl roughly when she did not cooperate, and my words and tone were not at all what I ever dreamed I’d use with my own flesh and blood, my own two beautiful kids.
At one point, after my umpteenth trip to get something, I stood at the top of the stairs, leaning on a dresser, my mind racing like it never had before. I was in complete turmoil; I was utterly useless. As I stood there in that moment, my head in my hands, alone, I felt like I was losing my mind. What the hell was wrong with me? Why couldn’t I deal with this? I wanted to cry, but couldn’t. I wanted to be angry, but at what? Even my breathing was shallow and rapid… is this what a real panic attack is like? I don’t know WHAT it was, but it felt like it was going to kill me. It took me about 5 minutes to calm down enough to go back into the fray downstairs.
I eventually got the kids together, very grudgingly and gruffly, and left the house, leaving Elle on the couch, without even a hug or any sort of affection. Except for the episode upstairs, she’d seen my behavior the whole time. I wasn’t oblivious: As I left her there, I saw in her eyes what I would later recognize to be true, undeniable, deep sadness. But I ignored it… not maliciously, but I think I was literally incapable of dealing with any more sadness; I was already in such distress inside, myself. My thoughts were just about getting through the day, knowing my work was sitting idle, my very means of income in jeopardy, and my mind unable to absorb what was happening.
TURNING POINT: THE LETTER
I spent that day with my children and my parents, and it turned out to be a good day for them. But inside, it was just another miserable day for me. Not because I didn’t love my kids or my parents, but because like every day for months now, I had woken up with a thought that would stay with me all day: “What am I going to do?”
What am I going to do? That question was like a loop in my mind, getting louder with each pass. WHAT AM I GOING TO DO? The weight upon me was truly intense. I have been through some really rough breakups in the past, and have been “down” before. But this? This was different. This was a “I’m going to lose my business and my ability to care for my family”, “no-hope”, “is-this-all-we-have-left?”, “I’m-not-strong-enough”, “I-want-my-old-life-back” all-encompassing defeat. The one person I had come to know as my true, sincere, “better half” – the one that has kept me level so many times when I wasn’t thinking clearly, was practically gone. I was losing everything, and it felt like it was all happening very fast. I didn’t realize how slowly but steadily my very being had been eroded. I hated who I was, and how I was dealing with all this, but had no means of Making It Better.
Even prior to that day, I had actually been conceptualizing how I might “make it better” by simply not being around anymore. You know, take out the huge life insurance policy, make it look like an accident, and maybe that would help Elle and my kids have a better future. I couldn’t “fix” what was wrong with her, nor what was apparently wrong with me, and I could no longer control my own emotions with my kids – the guilt of that alone was making things even worse – so perhaps they’d be better off with a nice lump sum payment, instead of this grouchy, miserable shadow of a man.
I had lost a little more control each day. And that day, it truly seemed to all come to a head at the same time… Because just as I seemed to have reached my limit that day, so did Elle.
I came home that day to a letter that Elle left in my office, after I’d left with the kids, which truly proved we’d reached a crisis point. I knew it was bad even before I picked it up and read the first word. As fed up as I was with our situation, so was she. Her letter confirmed it all:
As much as she was disappointed in how I was treating her, she simply could not accept how my confusion, frustration and anger were spilling over into my parenting. My kids were bearing the weight of something they certainly couldn’t understand, and it was almost entirely my fault. Worse, I knew, understood and totally agreed with everything she put on that paper. I was ugly, horrible, raw. I was not at all what she or the kids needed in their lives.
Looking back now, how amazing is this woman, once again, that she can do this: Even in her weakened Lyme condition, she still had the strength to stand up to me, to do what was right for the children. How… amazing to me, the strength of this person.
I had been forced into the position of LymeSpouse, and didn’t recognize it for what it was. My symptoms were destroying what little was left of our relationship, and now threatened our entire family. In her letter, Elle was ready to take the kids and leave. As weak and broken as she was, she was still able to consider going it alone rather than have an untreated LymeSpouse in her midst. She hated who’d I’d become… and now, so did I.
I was losing it all; We were truly in crisis.
TURNING POINT: DISCOVERING YOU’RE AN UNTREATED LYMESPOUSE
Thankfully, my parents had taken our children with them for the evening. So we were truly fortunate enough to able to spend that day talking about that letter. Well, to be accurate, I spent more than half the evening trying to figure out how I was going to start the conversation without making things worse. In addition to my sadness and deep, deep fear of losing everything I hold dear, I’ve never been so sheepish, embarrassed, and upset with myself. How could I allow things to get to this point, after all the years I’d spent being so proud of how well we communicated? How did we go from being a truly “model couple” for a lot of people we knew – they had specifically TOLD us this – to being on the verge of splitting up our family after 14 years? How could things go so wrong, so quickly?
Once we talked, once we shed our tears, once we got the real issues out in the open, we held one another tight, and slowly reaffirmed our commitment to one another. That was another turning point. I realized I had symptoms of my own, and was leaving them unaddressed, untreated.
It took a lot of discussion and a lot of crying, and I wouldn’t wish it upon anyone. Unfortunately, sometimes we have to reach that point before we can recognize things for what they really are, and take a new approach. We both have made mistakes, but as we had done with practically every other area of our lives, we finally found a way to open up about it. Once I forgave myself for having become something truly ugly, things started to change. But only after things had come to a very scary, heartbreaking point.
But you know, Lyme Disease is just like that. Idiot doctors prefer to bury their heads in the sand about Lyme until the patient is unable to function at all. You become desperate; you say angry mean things to doctors that just can’t or won’t help you. And then you make that one call, you find that one doctor, you read that one article… and you start to feel just enough hope to keep going.
For a LymeSpouse, I speculate that “The Letter”, or “The Big Argument” or whatever other “big thing” that happens, is truly a small window of opportunity to help you move forward. If you’re reading this, I hope you can recognize it for what it is, because it is a very small window indeed. But it has to be your way forward, because unless you knew what Lyme does all along, there’s a good chance it has infected you and your relationship just as it did your loved one – slowly, deliberately, and with great stealth… and you don’t realize how you’re changing, how your feelings towards your loved one, your children, your job, or even your own life are becoming so jaded, so eroded.
Once you realize those things for what they really are, you have a chance to fight them, to fight for yourself, your relationship, your loved one, your family. I got my chance, and I’m definitely taking it.
THE IMPORTANCE OF HOPE
I’ve loved Elle for almost 15 years. We’ve been through a great deal together, and none of it ever caused us to question our relationship until this year. If Lyme can do THAT, I can easily imagine what it will do to a relationship only a couple years old. Especially if it’s not even a marriage.
Hope is probably the single biggest factor in facing Lyme infection.
Elle had hinted, back before she was *seriously* ill, that my own negativity was wearing her down. I acknowledged this but didn’t know what to do about it. I didn’t realize, I guess, how negatively it would affect her if I couldn’t put on a positive face… or at the very least, suppress some of the negative things I was feeling, forcing them them to “wait” and at least come out at a more appropriate time and place.
For the patient, they need hope so they can continue to deal with their symptoms. When they run out of doctors, they need to find new ones that offer more hope. Without that, each day is not really “challenge” anymore, because the word challenge implies something you can win. Instead, each day becomes just a slightly different version of the never-ending nightmare. The patient needs hope and positivity from their LymeSpouse, and let me tell you, that’s a tough order to fill some days, when so much more is already being asked of you than you ever imagined. I saw and felt this firsthand with Elle. During those couple times when we were “out of doctors”, things were darkest. They only brightened up when a new chance arose to see someone new. What a rollercoaster… and if I was negative on top of it all, I was truly part of the problem and not part of the solution.
For the LymeSpouse, for the caregiver? Hope is needed so that they know that things don’t always need to be this way forever… that they will be able to see their loved one smile again, perform an evening of music with their band, tend to the garden, and be a mommy to their children. That they will be able to be intimate again; do the things that couples do.
The relationship needs hope, and honestly, it’s not always there. Sometimes you have to make it up. Being a LymeSpouse means pretending sometimes… putting on an act. Especially when you are at your worst. Not delusional, just… less negative. It means being more selfless than you can ever have imagined.
So, in order to create hope where there was none, I had to stand my ground. I had to MAKE time for every single doctor’s appointment, take notes, ask questions, and demand more from these doctors – and recognize quickly when one was going to be a dead-end. They don’t always like it, but that’s my job for now as a LymeSpouse… it’s one way I can take care of Elle that makes an outward, immediate difference and gives us both hope. And considering how many medications are at play, I might even be saving her life. Doctors are human too, and they make mistakes. They see many patients on an active basis – I “see” just one, and I see her nearly 24 hours a day. With regards to who can give more *focused* care… I’m winning like Charlie Sheen.
Don’t think you have the strength for all this? After a while, I felt exactly that way. I still do, sometimes. I considered giving up the band… but that would have meant Elle having yet another piece of her taken away too. We didn’t want that to happen – we didn’t want Lyme to win on yet another front. I have been a little surprised to find that in fact I *do* have the strength, and that when Elle gets to rehearse and perform, it makes her feel better. Even if only for a little while. That’s a form of hope, too.
WHERE WE ARE NOW (November 2011)
I’ve learned a lot, and some of it is downright rewarding. I hate how I’ve had to get there, but yes, I can be much more proud of how I deal with things than I used to.
I’m not the happy and comedic guy my friends knew me as, just one year ago… the guy who loved parties, sharing food and spirits with all, having people around and who would look for any opportunity to be the smartass that makes everyone laugh. I’m a little different now.
I should say, I’m different FOR now. For the time-being.
But I can live with that, because I have a greater understanding of what Elle needs from me right now, and so far it seems to have made us stronger. Lyme has made me a different person, but we have hope, and should we see some real progress in Elle’s health, I think that the different person I am right now will in some ways merge with the person I used to be, and there will be some real benefits to that.
I’m still figuring it all out, and I still get angry and want to run away from it all, but I know one thing… if I can help others by sharing this experience, that too will be rewarding. So that’s why my story is out here.
So where are we now? After the last useless visit with an ignorant rheumatologist, Connie took the initiative to get another primary doctor. She didn’t know what she was looking for; she just knew that her current doctor and all her cohorts were not going to help her any more. Our journey with them had to end. During this experience, we both became practical experts in Lyme Disease. We now know way more than we ever wanted to know. We know the terms, the protocols, the politics. And we knew that we had to keep working to find a Lyme Literate MD if we were ever going to have a chance of confirming Lyme and getting Elle, and our family, back on top.
By sheer luck, it seems, Elle stumbled upon a primary care doctor only a half hour away that was adamant about treating the patient, not just the tests or symptoms. Now, we’re not necessarily religious people, but I’ll use the term “godsend” in this case. The fact that she simply found this doctor (nurse practitioner, actually) in the PHONE BOOK and was able to transfer records and get an appointment, quickly, just out of chance, really makes you think.
Since then, this doctor has worked non-stop as an advocate for Elle too. He tested for Lyme and got a positive ELISA test. The Western Blot came back essentially negative, but if you’ve done any real research into Lyme Disease, you know by now that the results are meaningless. Treat the PATIENT, not the test.
He did some referrals which were still unsuccessful, and finally attempted a referral to Dr. Horowicz, one of the premier Lyme doctors in New York. Elle was literally placed on a year waiting list, just to GET an appointment. The new primary care doctor was not satisfied with this, and recognized how Elle’s condition was continuing to deteriorate. He never gave up, and he found for us probably the best doctor we could have ever hoped for – Dr. Cameron, only three hours away. He was president of ILADS for two years, ending in 2009. This doctor simply KNOWS Lyme.
Out of pocket expenses were expected, and they became reality very quickly. A $600 initial visit and $175 for each follow-up visit is steep and of course, not covered by insurance. We have to drive there and back, and usually have to stay overnight because the trip is taxing for Elle to spend that much time in one day in a vehicle. And, it means finding someone to watch the kids when we have to go. We try to make the best of it.
We’re not even sure yet whether the medication will be covered, or the additional battery of tests (which our local hospital lab hadn’t even HEARD of – probably because the doctors up here don’t know to order them, due to their ignorance of what Lyme is all about) that he requested. It doesn’t matter, we’ll find a way… this is our chance.
Elle was started on Doxy, and we believe that within 3 days, she had a classic Herx reaction. All symptoms were amplified to levels she never could have expected. “Worst pain I’ve ever felt” means a lot coming from Elle –but those are the words she used. The mass die-off of these bacteria creates a whole new experience… a painful, debilitating one.
But we have to see the Herx reactions as a good thing, because it’s confirmation. Confirmation that she’s not crazy. Confirmation that she may not need to live for the rest of her life like she has the past year.
My journey as a LymeSpouse is far from over. I’m sure I haven’t been through nearly enough. But thus far, I’ve learned a lot about myself – what I can tolerate, what my own brain and emotions can do to me – and I’ve learned how rewarding it can be not just to “take care” of someone, but to be truly involved in the CARE of a person… caring for them when they are at their worst, doing more when you feel like you’ve done enough, and yes, putting on that smile and being the happy daddy when you feel like you’re kind of numb inside from the loneliness and helplessness… when all of YOUR spoons have been given out, and you just miss the person your loved one “used to be.” I sometimes have to remind yourself that that person is still in there, and she needs MY help before they can come back out. What a charge to put on someone who’s never going to be a doctor.
I’ve learned you have to keep working to be a proper advocate for someone that is literally losing who they are… you have to step in on their behalf. You know, it’s very interesting… the medical community likes to have a “proxy” in the event that someone literally cannot speak for themselves. They practically beg you, especially as you get older or before major surgery, to establish your “health care proxy.”
And yet, you’d be amazed at how inconvenienced they act, when a LymeSpouse begins to speak on behalf of their loved one. It seems they ONLY want you to be a proxy IF the person literally cannot actually SPEAK.
If it weren’t so sad, it would be fodder for a comedy skit.
Today, for now, we consider ourselves very, very lucky.
Lucky because – purely by chance, Elle found a primary care doctor that actually cares; unlike her last primary, he actually remembers her case upon each visit and what he’s done for her to date, he doesn’t stop looking for answers, he doesn’t think this is some made up situation, and he continues to offer hope. Real, genuine hope.
Lucky because our story was only about a year old before we found a Lyme Literate MD – we know some people have dealt with this for many many years, undiagnosed.
Lucky because we seem to now have not only an actual diagnosis, but also a violent Herx reaction to match.
Lucky because we are fortunate enough to have some family support, and a financial situation that allows us to consider the out-of-pocket expenses to date.
Lucky that our own children are so resilient – they have weathered this in a way that would make any parent proud, and at only 7 and 4 years old they are the most well-adjusted, happy kids you could find. We’ve been able to shield them from our pain, and I’ve been able to remind myself much more often that the weight that Elle and I carry is not theirs. To protect them from it means to invest in their future emotional well-being in a way that we hopefully won’t have to address later with much more negative results. They get to grow up in a secure and loving home with two parents, and see by example how someone takes care of someone else when they love them so dearly as I do Elle.
Lucky because our relationship has been strong enough to date that we haven’t given up on each other, though it’s not as if we weren’t challenged to do so.
And I’m lucky that I have the resources and some extra time to put all this out here for the world to read, hopefully to help at least one other LymeSpouse understand and find some strength when they thought they had none left. Perhaps to preserve one more relationship, one more family, keeping them together for one another. If I can do that… I’m lucky too.
Thank you for reading.