This is where I get excited about my life. Or depressed, or confused, or any of the things that make me tick. Speaking of ticks, I was bitten by one in 2014 and contracted Lyme disease, but didn’t start treatment until mid-2015. Big mistake. I started this blog to talk about how I found joy while living with Lyme. Now I am trying to live life AFTER Lyme, if there is such a time. Like all things worthwhile, it ain’t easy.
I been holed up lately, because there’s not much to say right now. Yes, I’m still sick. No, I don’t know if I’ll ever be completely well. No, there’s really no clear path or prognosis for me. Yes, it sucks. The uncertainty and grind of being sick for so long has started to wear me down a bit emotionally. Since I can’t change the fact that my future is not predictable or stable, I have to change the way I look at it. This is euphemistically called ‘adjusting my expectations. What a loathsome phrase. We all know it really means ‘tough shit, your life is not the same, it’s never going to be the same, and you’d better fucking get used to it’. After four+ years of Lyme, I am stuck in the ‘almost well’ category. Why? Who knows. Maybe I’m not trying hard enough. Maybe my body reacts to things differently. Maybe there are other factors in my environment. Maybe I’m one of the unlucky few that just can’t quite get well.
It doesn’t really matter at this point, the adjustment has to be made. I’ve been working on accepting that I managed to get a serious illness since the onset of Lyme. Lyme keeps moving the bar and fucking with me. I get better, something pops up, I get sick again. What is truly mind-boggling is how obtuse I can be to the cycle.
It’s a level of stupidity that I can only ascribe to both Lyme and my own inclination to turn a blind eye to bad things. The signs are all there: I forget dates, I’m exhausted, I cry at nothing, I can’t concentrate, my neck hurts, my hands throb, and my teeth hurt. The same damn things every time and still I’m blindsided when I have another relapse.
After that, I accept the fact that I have to hoard my energy, and always plan for the worst. It makes my social life unpredictable and my working life difficult, but I do it, and without too much fuss. Emotionally, though, I struggle every day with adjusting. This is where I stamp my foot an scream “but I don’t wanna!” Lyme doesn’t give a rat’s ass what I want.
Picking which adjustment has been the hardest would be impossible. Is it that I can’t work full-time? Or maybe that I can no longer just up and do something. Perhaps it’s the uncertainty that if I DO do something, I might not get out of bed for a few days. It also could be how weak and puny I feel about myself when I get sick once again, as if my body is betraying me again. Maybe it’s the guilt I feel about constantly cancelling out on friends, or ignoring their emails, texts or phone calls because I just can’t summon the energy to talk to them like a normal person. It could be all these things, but I think the main thing is if I adjust, I am admitting I am an irrevocably changed person from Lyme disease.
For one thing, my life is much quieter than it was. It is amazing how having to parcel out your energy gives you a laser focus on what you want or need to do. I suppose I could blow off taking care of the house for a more active social life, or I could give up everything else and work full-time. Or I could simplify my life until I only have the essentials and free up time from maintenance for something else. Most people have to make some of these decisions, but not to the extreme that I do. When I decided to celebrate Thanksgiving and my birthday, it took four to five days beforehand devoted to resting and taking care of food and cleaning. Even then, I was knocked out the Sunday and Monday after Thanksgiving and my birthday party. It is ridiculous, and I hate it.
However, hate is an emotion that wastes a lot of energy. In fact, all extreme emotions use up energy. Love, hate, sorrow, anger, all suck the vitality right out of you, so they are best doled out in tiny portions. Bonus: I don’t have the energy to sweat the small stuff. It’s been tremendously hard to wrap my brain around the various labels ‘adjusting’ conjures up: disabled, chronically ill, and malingerer come to mind. Once I get over that, I might be, no, I will be in a better place. If I know this to be true, then why is it proving so difficult?
I used to think I wasn’t a fearful person. Armed with statistics and a healthy lifestyle, illness and accidents were part of a lottery I thought I had little chance of winning. Then I was bitten by a tick. Now I see that I had plenty of fears, I just didn’t admit to them. Except for spiders. I was afraid of spiders. Now I’m afraid of ticks. I don’t know if I will ever willingly go into actively tick- and Lyme-infested woods. Going through the last four years again is unfathomable to me.
The list of my fears is not rational. Is anyone’s? I am scared of, in no particular order, tornadoes, earthquakes, cycling on roads, drowning in the deep ocean, and losing my daughter. Oh, and volcanoes. Being encased forever in hot magma scares the crap out of me. I realize my chances of dying in a tornado, earthquake or fire are slim to none, but they evoke a primal terror inside of me, as does drowning in deep ocean waters. These fears limit me only slightly, but I would think twice before I lived anywhere along the ring of fire, or tornado alley. Now that I live in the suburbs of Denver, fire is not a real fear, but I definitely live in fire danger country.
I am not afraid of flying, drunk drivers, snakes, mice, or smaller spiders. Large, unexpected spiders make me jump, but I’m not gonna die of fright or anything. I should frightened by cancer, falling down in my own home, fire, heart attacks, strokes, and gunfire, but I’m not. I am less and less afraid of death. I do retain a perfectly healthy fear of how I die.
Getting into existential fears is pointless. Of course I’m afraid of failure, success, commitment, being alone, love, not being in love, and why I exist at all. I’m not particularly afraid of speaking in front of people or rejection. Any sane person should be afraid of being shamed in public or shunned. I think I probably should have titled this ‘My Personal Fears’. Fears, like one’s belief system is highly personal. No two person’s lists are the same, really. I might argue that these two parameters truly define who one is.
This completely informal list of neuroses has changed, obviously. Life experiences shape one’s fears. Fears about illness and aging have moved to the front For instance, is Lyme like polio? Will it come back with a vengeance when I’m older and physically vulnerable? What if I do something foolish, like trying to descend a flight of stairs with two suitcases while I’m traveling and fall? What is I’m working in the yard and have a stroke? I never gave a moment’s thought to any of these scenarios when I was young. The slow, inexorable accumulation of insults, injuries and illnesses has changed my list.
My fear of ticks is actually grounded in statistics and science. Global warming has exacerbated the upswing of vector-borne diseases. Mosquitos, ticks, and fleas hang around longer because there are less sub-freezing days. We encroach more and more on natural habitats of the deer, mice and other animals these insects feed on, exposing ourselves to an ever growing list of diseases. There are diseases in the water and dirt around us. Houstonians know this firsthand after hurricane Harvey. Southwesterners know that Hanta virus and Valley Fever fungus live in the dust and can kill. People who live where mosquitos are know about Zika and West Nile Fever. I don’t think my fears on this front are misplaced.
With Lyme, I have discovered earlier than some people that I am terrified of losing my mind. I think I could live with loss of mobility, or hearing, but I’m not sure. I also think I could live with chronic pain, but I’m not sure. I am positive I cannot live with the loss of cogent thinking.
As I wrote out my list of significant fears, I left out the everyday fears, the ones I have carried most of my life, because I wasn’t quite aware of them. The biggest one is protecting my deaf side. I do not climb trees. I do not place myself in physically precarious situations, like bungee jumping, cliff diving or skiing. I guard that side of myself unconsciously and zealously. This is another fear, like ticks, where my fear is valid and my vigilance necessary. The other constant fear didn’t begin until thirty-one years ago, when Katie was born. I share this fear with nearly every parent, the thought that I might lose Katie before I die is always there, a kind of low-level current that trips when she’s driving late on a snowy night and I haven’t heard from her, or when she gets sick.
Lifestyle and genetic illnesses don’t scare me at all. My biggest indulgences are smoking pot off and on, depending on how sick I am, and salty chips. I don’t have a family history because I’m adopted. Aside from Lyme, I have zero health problems. No high blood pressure, no cancerous moles or heart problems. No medications outside of Lyme. I tend to feel my chances of cancer are dictated by genetic mutations and bad luck, so I play that lottery without worrying. If it happens, it happens. I’ve worn sunscreen virtually my whole life (thanks, Mom!) and have had one sunburn.
So that’s it. A somewhat incomplete list, to be sure, because I could reel off a whole other list of minor anxieties and half-baked fears. But these are the biggies, both rational and irrational. Right now, and perhaps for the rest of my life, Lyme disease remains the hulking specter that overshadows all other fears.
I am bouncing back from a particularly shitty relapse. I’m feeling overwhelmed and hopeless, like I can’t manage my own life anymore. The worst part of this relapse and aftermath has been mental. If you haven’t heard from me in a while, you are not alone. I prefer to be wiggy in private. To add to all this crap, it’s been four years since I was bitten by a tick. FOUR YEARS. I’ve read anecdotal evidence that people have relapses around the same time they were bitten. If so, it makes perfect sense that I relapse now. On top of that auspicious milestone, heat causes some Lyme patients (me included) to feel much worse.
This one blindsided me. I was, I thought, on the road to real recovery. And so began valuable lesson #1 with Lyme ‘recovery’: plan to relapse at any time whether you like it or not. The hallmarks of any valuable lesson is suffering, humility, pain, and a bunch of other emotions I avoid. Denial, my old bitch of a friend (denial is female in my world), came for a nice visit until I dragged my ass to my LLMD. It seems that my bugs like my brain. It’s where they hide when I’m feeling good. He announced the return of bartonella. YUCK! Bartonella is the worst. Sore feet, sore teeth, ear pains, headaches, neck aches, muscle aches, creaky joints, muscle cramps, watery, itchy, achy eyeballs, and mental problems. I love a good euphemism, and “mental problems” is right up there with “small setback” and “not too bad”. Why is it so hard for me to admit to depression, anger, anxiety, hopelessness, lack of motivation, and obsessive compulsiveness? Everybody has some of these feeling sometimes. If anything, I should announce them like a badge of honor, because I have bugs in my brain.
Denial left the house and self-pity moved in. I wallowed around with him (of course self-pity is male!) like a pig in a mud bath for a few weeks. I cleaned. I cooked. I slept a LOT, walked the dogs and gardened very early while it was still cool. That was all I could manage. Self-pity is that friend who doesn’t like any of your other friends. After that, I had hours to fill with all those fab feelings of worthlessness, sadness and guilt. I was able to read some ‘beach read’ books, and the sheer mindless entertainment helped a little.
It wasn’t until I found Downton Abbey that self-pity had a challenge. I know, I’m late to the party. At this rate, I’ll probably start GOT in 2022, and Breaking Bad in 2024. What can I say? I was hooked. Katie will remember this as the summer her mom sat in the cool dark of her bedroom at midday, the sunlight cracking the edges of the blackout curtains, lost in the delicious machinations of the Crawley family.
My relapse was also worse because I had four months of relative clarity and sanity. Is it harder to bounce back mentally each time my brain becomes inflamed? Is it harder for anyone else in this situation? I meet so few people who suffer from episodes of an inflamed brain. Is the quality of the crazy different if it’s a chemical imbalance, rather than an illness-induced debilitation? These really aren’t the kind of questions I can ask most people. There is the possibility that I won’t ‘work through this phase’. What if I never truly get well? What if I have to live a different kind of life than I thought? What would that look like and would it be so bad?
In a sense, I’ve been given the gift of getting my priorities straight. What adjustments am I willing to make to concentrate on what matters most to me? And what matters to me the most? At the end of the day, how do I want to have spent my time? This is not an easy task. The options all have good and bad sides. What irks me the most is the adjustment I am struggling with now: the loss of endless possibilities. The emphasis is on ‘endless’. That part of the equation is simple. I can’t do it all. I have to make the hard choices in order to stay healthy. This must be what makes Dad worry so much—he is far more aware of the implication of limited possibilities than I am.
What I must do is what I have always done, and that is to find the positives in relapsing. In that, I have boundless confidence. It’s what I do best, even with an inflamed, fragile brain (and for me, my brain is my vanity, my Achilles’ heel) and low, low self-confidence. As with all things Lyme, this will pass and I will feel better, at least for a while. If I can figure out my priorities and can handle my new levels of expectations, then everything else should be gravy, not the other way around.
I discovered two things about myself the day Katie was born: I would die for another person, and I would kill for another person. That a love so fierce could spring up inside of me was a surprise I think no new parent can anticipate. I’d been waiting for her my whole life. Why have I not written about her until now? I suppose I felt that we’re far too close for me to be objective. Then it occurred to me. I don’t have to be objective. She is the center of my universe. Anyone who has known me for even a short time knows this.
Sometimes I don’t know why I love her so much. She’s fractious, strong-willed, and completely uninterested in pleasing me. Within hours of being born, she was kicked out of the maternity ward for disturbing the other babies. I was amazed when I heard other babies crying. They sounded puny compared to the robust shrieks that Katie produced. The only times she wasn’t lustily demanding attention were when she nursed or slept. Katie was a world-champion sleeper and eater. She weighed 26 lbs at six months. She took naps until she was seven.
Katie is an artist. She would not take direction or classes. A wise art teacher told me to buy her supplies and books and leave her be, so that’s what I did. Sometimes I think she is part mermaid, part fish. She took to water like, well, a duck. That was her first word, at seven months. She hasn’t shut up (at least to me) since. She drew this picture when she was five:
This is how she saw herself, even then. She loved animals from the time she was conscious. Once, we went to a pioneer farm outside of Houston with my parents. While we weren’t looking, two-and-a-half-year old Katie was found hugging a sow who weighed at least 400 lbs. The farmer was apoplectic. Katie was thrilled.
She is one of those lucky people who knew she wanted to work with animals or make art from a very early age. She has never deviated from this, and today she is working to become a graphic arts designer for a zoo. I don’t know where these traits came from. I am not artistic, neither was her father (There are reports that this came from an uncle on her father’s side, but no one is sure, because that side of her family is shrouded in secrets and mysteries.) No one is obsessed with animals. My side, of course, is a blank. We don’t know what my aunts, uncles, or cousins love because I’m adopted.
I think this was why her birth had such an impact on me. She is the only person in my world who looks, laughs, and talks like me. She gets me in a way that is primal and instinctive, the same way I get her. I can’t judge how I was as a mom. I made many mistakes, I know this. I also know that I did some things right. She knows I love her and accept her for who she is, no matter what. There were times when it might have been easier to crush her spirit to get her to do what I wanted, or to make my life a little less difficult. My intuition told me this was not the way, it would never be the way.
There were, as expected, many rough patches. The usual preadolescent angst made her snotty and dismissive. A major upheaval in eighth grade damaged and delayed her teen years. She understands #MeToo, just as I do. She left home for seven years, a necessary time to grow. She returned when she was twenty-five. I recognized she had grown, but my ex didn’t. They have long been oil and water, and as she’s gotten older, they have started to figure out how to have a relationship.
We live together now, in a house big enough to give us our own space. We prefer living with each other. There are never arguments about much of anything. Someone does whatever needs to be done. Oh, sure, we bicker sometimes, and sometimes get frustrated with each other. We’ve reached that stage where she is right about 90% of the time, damn it! It does work, though, mainly because we both need a lot of space.
When I got divorced, and later, after I was sick with Lyme, Katie has risen to a true equal. She has taken care of me as I took care of her. We will always be mother and daughter, but we are also two single women who are friends. Quirky, loyal, artistic, quicksilver, and most of all, herself, I will always love her more than any other person on earth, unless she decides to have kids. I’m not holding my breath, and it won’t matter one way or the other, because like I learned from my parents and she is learning from me, I love her anyway, and all I want is for her to be happy.
It has been almost six weeks since I began to seriously participate in my own life again. This sounds rather pathetic, but after three years of unrelenting illness, this is a major accomplishment. The problem is, what is my life? There is nothing, outside of staying in Denver, Katie, and my Dad, that is the same. Let me backtrack to when I would define my life as being on an even keel, way back in early 2011. That was the year my mom died, and the year my ex quit his job. I started graduate school in January of 2013, five weeks after we decided to divorce. Since 2011, I have hit every major life stressor (death of a loved one, loss of income/job, divorce, move, school, and major illness) except for pregnancy and marriage. Wow. It looks pretty grim when I list it all. I’m tough. I know that, I’ve always known that. I’m resilient, something I didn’t know until recently. I mean, I knew I didn’t react to calamity like other people, but I didn’t define that as resilience. I defined that as life.
We all have our limits, though, and when I started trying to do what I once considered normal activities, I got depressed and anxious. I felt hopeless for more than a few hours at a time, a rarity so foreign to me that I didn’t recognize what it was. Who was I trying to kid? I couldn’t do life anymore. I was so out of practice that keeping things together felt impossible. In some ways, being sick was easier. I was stuck. There was no way I would go back to being sick if I could help it. I didn’t know what I was moving towards, but I had to move forward anyway. This is the classic definition of cognitive dissonance. I was being flung outside my comfort zone (whatever that was) to an unknown future. I had four choices: Ignore and deny (of course I’d like this one!), dwell in being nearly well and redefine well (yuck!), accept where I was and make small, real changes (hmmm…), or act like I was well and jump in (okay, but…). I didn’t like any of the choices, really. I wanted everything to fall into place magically, without the awful, churning middle phase. I figured I would make small goals and keep at it, and something would happen.
Nothing much has happened. I’ve had false starts and setbacks. I’ve redefined the goals. One thing I didn’t do was stop. Gradually, (well, maybe not gradually, I didn’t have this epiphany until today) a daily satisfaction set in. The beginnings of schedules and structure appeared, by simply doing it over and over. I found I was working eight or nine hours a day, doing all sorts of different things. Applying for jobs, writing cover letters, researching companies, working part-time as a lifeguard, working part-time from home, cleaning, cooking, reading submissions for a literary review, writing my blog, fixing my website, learning technical writing, and refreshing copy editing skills. Whew! I have become busy! Some days I have to accept that I can’t return fully yet, and I can’t beat myself up for that. Other days I can charge ahead and do everything on my list, and then some.
I haven’t gotten my dream job. I haven’t finished my book. My website still has bugs that I haven’t figured out. I’m only a quarter-way through the copy editing book. I’m half-way through the technical writing book. What I have gained is the intangible. The satisfaction of a day well-spent. My brain is slowly returning to normal, much more slowly than I’d like. The challenges are immense: am I able to retain what I’m learning? Am I making mistakes that I can’t see? There are still cognitive gaps that aren’t apparent until I’m confronted with them. For instance, a friend asked if I’d read Willa Cather’s My Antonia. Of course I had, I’d read the prairie trilogy years ago, then reread My Antonia again. I’d written about the book in grad school, for Pete’s sake!
I couldn’t remember a thing about the book, except that I’d read it. Another time, I went to a play with a new friend. They were playing 80s music before the play. I couldn’t remember lyrics I used to know by heart. The whole cognitive deficit part sucks, but the stimulation of learning new things has been restorative. We’ll see how successful I am at retaining what I’ve learned. I hate my sorry-ass brain at the moment.
I don’t like this phase. I don’t like being in limbo in virtually every aspect of my life. Oh, I know. It will make me a better person. It’s another fucking opportunity for growth. I’ll get there. Blah, blah, blah. I don’t think about those things. I can’t. The unknowns are too big. Maybe the way out of an existential crisis is simply doing things and moving forward every day. My mind, to paraphrase Camus, must stop watching itself and start acting.
A new chapter, turning over a new leaf, rising from the ashes, rebirth, starting over; the sheer number of maxims boggles the mind. The facts are usually the same. Person has a setback, person begins life with a new purpose. I might argue this is one of the most basic facts of life. It smacks of redemption, courage and strength. There are many levels of this type of renewal. From “tomorrow I’m going to start to get to work on time” to “I’m going to recover from cancer and live my life differently”, we all understand the concept, just as we realize the difference in magnitude.
For me, my own personal rebirth begins with “the good news is I’m nearly well from Lyme disease” and “the bad news is I’m nearly well from Lyme disease.” How could getting well be bad news? Let’s look at the word ‘nearly’. Being nearly well means I can’t quite begin a new life, but I have to try anyway. ‘Nearly’ means I will fail often because I will try to do either too much or not enough. ‘Nearly’ means still picking and choosing where to put my energy, and getting it all wrong. ‘Nearly’ means napping almost every day, not because I want to, but because I have to. ‘Nearly’ means doing work that is not challenging just in case I have bad days where my brain isn’t functioning.
There is no other solution than to carry on. I make modest daily goals in hopes that one day, I will be well. On good days, I get everything accomplished and feel like perhaps I’m getting my life back. On bad days, I have to decide what to let go and find a way to be happy about it.
I’m still trying to figure out how to explain that I’m mostly well. There are days when I think, I’ve got this. Where I make a new Plan A. Those are the days I forget I have Lyme (Had? Another thing about ‘nearly’—is it ‘have Lyme’, or ‘had Lyme?’). Other days, I am overwhelmed to the point of giving up. That’s when I think about selling the house, moving into an RV, and disappearing.
On one of those good stretches, I decided to redesign my web page. After all, I am no longer ‘finding joy while living with Lyme’. Surprisingly, figuring out a new tagline and a picture to represent ‘life after Lyme’ was harder than the nuts and bolts of redesign, or writing this post. Because, who the fuck am I now? I was already changing when I got sick. I should view Lyme as a delay, but that wouldn’t be correct. Lyme changed me. It changed my priorities and what I want for the rest of my life.
It took a discussion with Katie to figure out what best represented my life. The tick isn’t gone. The tick will never be gone. It is crystallized forever inside me, slowly fracturing into a million pieces as I struggle to become whole again. After we figured that part out, the tagline became easy. I don’t think bumbling is too harsh a word. I am bumbling, because I am still changing. Maybe that’s what ‘nearly’ is.
I have two family trees. All adoptees do. The first is the family whose name I share, who I grew up with, my family. The other tree is newer, yet with older roots. It is my DNA tree. I had done a DNA test over fifteen years ago, but the parameters were much broader back then. This time, the motivation was from Dad. He had his DNA tested and showed me the results. I asked Katie if she wanted to get tested because they were running a two-for-one special. To my surprise, she really wanted to see what her genetic background was.
The irony of her enthusiasm is that I searched for my other family tree because of Katie. When she was in high school, she had a rough time. Was there some clue in my birth family that might help me help her? I must have had an unconscious desire to know myself, but I sure didn’t know that then. I just wanted to find out my genetic background, I told myself.
I hope Dad understands this journey is completely separate from my relationship with him. I am always, and forever, Bob’s daughter. Shirley’s daughter. Mike’s sister. Ginger’s cousin. Katie’s Mom. Me. I never expected that this quest begun for Katie would awaken a desire to know my other family tree.
As an adoptee, not knowing your DNA family is nothing new. In fact, it was probably more common to have been orphaned or abandoned throughout history than now. I can tell you that no matter how wonderful your family is, or how good a fit (mine were/is, on both accounts), being an adoptee is incredibly lonely. There is no one who looks like you. There is always the stark words ‘adopted’ written across your medical history. No one compares you to an aunt, or brothers and sisters, or mom and dad. You are an island unto yourself. I coped by keeping a little part of me protected. I wasn’t aware that I did this until recently, and I wasn’t too happy to see that.
I already knew who my birth parents were when I ordered the tests. My journey started back in August of 2007. Apparently I had to mull over my options because this was three years after Katie had graduated from high school. For $65 I ordered my de-identified adoption paperwork from the Methodist Mission Home in San Antonio. The heavily inked out lines are reminiscent of secret government files.
There have been a lot of emotionally jolting firsts for me since then. The afternoon I received a packet from Methodist Mission Home, I pored over the papers. My birth mother wanted to be a journalist, her family owned a restaurant; she was one of eleven kids. My birth father was a musician and a journalism teacher. Huh. Imagine that. September 5th, 2007, two months after listing my information on every adoption reunion site I could find, an “adoption angel” who had seen my request sent me my birth mother’s name and a link to my original birth certificate (my birth mother had named me “Suzie”. I’ll give her a pass because she was 18 and it was the late 50s). After months of sleuthing, I saw a picture of my birth mother. I remember I sat there, stunned, staring at the young girl who looked a lot like me. Some five years later, I finally, finally, put all the pieces of the puzzle together and found out who my birth father was. His picture confirmed everything. I look like him, too. At long last, I had images of the people who created me.
I now have a dual-track family narrative. The one that is, that I’ve known my whole life, and one that I’m struggling to form into a new narrative. They will never meld. I have no desire to spring myself, uninvited, into my birth mother’s life. I don’t care to hear her story, the mea culpas and rationalizations behind her choices. It is enough—more than enough—to know who I came from, to see their pictures and names, and to see what I am made of.
My mind, body and spirit have grown flabby from Lyme. I had good news from my doctor this week. I am, metaphorically, sprinting down the backstretch. Only I’m not sprinting, I’m lackadaisically strolling, the one pace Lyme allowed. This is supposed to be good news, and it is. I haven’t figured out what it means for me yet. I was warned that this isn’t an immediate return to health. My body is more than flabby, it’s a toxic waste dump. It’s worn down and tired from three years of illness. When I was out of town with Dad the last few weeks, I got compliments on how good I looked. What a cruel paradox. I’ve never looked healthier or been sicker.
I joked with my friends in Dad’s retirement village in Tucson (yes, I’ve spent so much time there that I have my own friends there) that I live the lifestyle of a five-year-old. I also joked (but not really) that I’ve gotten a preview of the ravages that age brings. A preview, not the big show. I hope I make it to the big show. I’ll at least know how important taking care of yourself is.
That was one of the best parts of my doctor’s appointment. I have passed into that strange relationship doctors and patients have when they are brought together through serious illness. Not-quite-friends, he knows too many intimate details of my body and life to be merely an acquaintance. I see his wife, also, and I was delighted to hear from each of them that because I work so hard on my health (italics mine, because I am pretty fucking proud of myself) they think I’m going to make a full return to health. Yassss!
One of the secrets to coping with a long, drawn-out illness is surrendering to the illness. Not surrounding as in giving up, but giving in. It is, however, quite possible that I have gotten too comfortable with this skill. It’s ironic that the coping mechanisms I used to get through the last three years might be liabilities on the road to wellness. So what do I do now?
I consider myself an athlete. I have never gone more than eight weeks without working out. Whether it’s tennis, swimming, pickle ball, weight-lifting, Zumba, Jazzercise, running, hiking, or yoga, I am always doing something. I have continued this as much as possible during Lyme; in periods of relative health I swam, played pickle ball, walked and lifted weights. Each time was hard. I’ve had no stamina for two years. Getting back into shape is always a pain in the ass. I’ve done it after each of my surgeries and I will do it again now. Five minutes today, ten minutes next week. One day I’ll wake up and be working out at my normal pace.
Maybe that’s what I need to do in other areas of my life. I’ve never lost my mind before, but I’ve been working crosswords, playing Words with Friends, writing, reading again—getting my mind back into shape. Now I have to turn that mind-play into mind-work. I’ve shied away from mental work because I couldn’t handle the inevitable failure trying to perform a challenging job while I had Lyme. Now that’s changed. First step will be to devote an hour or two each day to a new, online writing job. It will seem unbearably difficult to me at first, like that first time I swim after a long layoff. I feel like a beached whale the first three or four times, my limbs flailing through the water and lungs gasping for air. Then there is a day where I slice through the water, pushing the last fifty of a two hundred without dying. I will gradually work more hours. One day I’ll wake up and realize I’m doing it easily and happily.
It’s the time between now and one day that is daunting. I’m sure I’ll push too hard, or beat myself up for not pushing hard enough. I’ll cry and get angry and wish things were different. I’ll bitch and moan to anyone who cares to listen (anyone? anyone?) how hard it is. There will be days where I feel strong and sharp and in control. There will be many more days where I want to crawl under the covers. I don’t ever want to be this sick again. Never, ever, ever.
My spirit is the weak corner of this triangle. This is one of the few times I wish I had faith in something. How easy it would be to fob it off on “god”. That’s not for me, though, I’ll have to figure out how to get my joie de vivre back on my own. It may surprise me, what makes me happy and replenishes me. I don’t have a clue at this point. Or maybe I do, but like my mind and body, my spirit has also atrophied, the energy Lyme took far exceeding my resources. What if my spirit doesn’t come back? I’m scared I don’t have what it takes to make it down the final stretch. I know, I’ve made it this far, blah, blah. If I can’t figure out how to rejuvenate my spirit, all of this will feel insurmountable.
I look at the people in Dad’s community. Some of them face what seems to me to be unimaginable hardship. They all cope with their changes differently, that’s expected, but they all share an unquenchable spirit, a thirst for life. That’s what I want. I just want it to be easier to get. Not only that, I find I really want to hang around for awhile. The world is an endlessly interesting place to be. I’ll find out what my spirit is made of, and what revives it. I’ll use that knowledge when I graduate to the big show and I’ll stay thirsty for as long as I’m able.
This blog was originally about losing my mind and being sad when I got well enough to realize I lost my mind for a good long while. There is little doubt (at least to me) that my brain is returning. I kept veering off the subject of crazy, though. and into grief. I had no idea that I was and am grieving right now. Grieving is different than depression. Grieving the loss of something partially returned is different than mourning the loss of a loved one. Nonetheless, grieving overtly implies loss, and only now can I see what I’ve lost in the last three years. Only now that I am returning to health that I have the energy for such an indulgence. Perhaps ‘indulgence’ not exactly right—it seems unavoidable—but why can’t I use my returning energy for something useful?
I haven’t had a huge amount of loss in my life. Three of my grandparents died before I was thirteen. My Nanny died when Katie was young. I mourned, but I didn’t know profound loss until my mom died. That period of bereavement morphed into an outpouring of grief for all the hurts in my life. What purpose does this serve for humans? It’s never fun, always difficult, and the end result is, what? A blank exhaustion, a feeling that there are simply no more tears to be shed. That particular part of the journey is different for everybody.
What I really want to know was why I spend so much energy on grief. There are four stages of ‘normal’ grieving: Numbness/disbelief, Separation/distress, Depression-mourning (are the two inseparable?), and Recovery. There is something called ‘complicated grief’ (wtf? is that different from ‘simple grief?) and ‘infinite loss’. I hate having my journey so neatly compartmentalized, so pedestrian. On the other hand, knowing this is normal is comforting. I found myself feeling much better just reading about ‘Perpetual complicated grief’, aka, constant sorrow.
I am not a woman of constant sorrow. There are times when an inertia settles over everything, and that’s unpleasant. The grief is like a low-grade fever, not incapacitating but definitely a factor in my everyday life. Grief from chronic illness is different from acute or terminal illness. Those illnesses have a definite end, one either gets well or one dies. Chronic illness is a series of losses, unending, and multiple. These are known as infinite losses. Great. Constant sorrow over infinite losses. Sounds Sisyphean, and it is.
The most difficult aspect of chronic illness and grief is girding up for the next round. As I write this, it (finally, DUH!)occurs to me this is why I am continually battling exhaustion. This is why I nap daily and sleep eight hours a night. Maybe grief serves as a reminder to my body: this isn’t over, you need to rest, don’t get too excited, now. As if I need a reminder.
Sometimes I wonder when this (Lyme and grieving) will be all over. More often, though, I remind myself that the weight of my illness and grief are the only things I get to determine. So I bumble on, wrestling with keeping both loads as weightless as I can, while still trying to live. I need to be smacked in the face to recognize what is often right in front of me. Putting a name on what I am experiencing is what I need to recalibrate. Which brings me to comfort. Anyone who has gone through this process understands the need for comfort. Respite might be the better term, but comfort through the process is elemental.
I have time-tested activities that provide comfort to me. Some are mundane, like cooking and cleaning. The results of both are deeply soothing because they are concrete reminders of my usefulness and skills. Movies. Cocooning in a dark theater and entering another world, no matter how grim, is essential. Music. Because singing loudly and badly with your favorite songs never gets old. Walking the dogs. No explanation needed. Playing pickle ball. I love the game and the people. I don’t want to brag, but I’m popular with the over-65 men. Writing. For some reason I love spilling my guts to everyone. After the first time, it gets easier. Lifeguarding. Any work is better than not working. Besides, I like lifeguarding. I think deep thoughts staring at the pool.
Sometimes it’s hard to recognize whether I’m grieving or relapsing. A friend who has battled a chronic illness for years told me that when he’s having a good day, for whatever reason, he lets himself enjoy it. Does whatever he wants and doesn’t feel guilt AT ALL. I tell myself to do that, but it isn’t easy. I have trouble gauging how much I can handle, and tend to beat myself up when I do too much. Maybe when I get to the recovery stage I can relax and enjoy life fully.
Where does all this grieving and ruminating leave me? A little bit stuck, I guess. I am going to have to trust in myself (always dicey) and have faith that one day grieving and healing won’t be so hard. Meanwhile, I keep busy cleaning, resting, lifeguarding, writing, vegetating, playing pickle ball, walking the dogs, working from home, and above all, trying to get to that zen space of enjoying myself guilt free.
ps I started this blog before Las Vegas. The sense of grief over events in the world today is a daily battle. Comforting and being kind to yourself is more essential than ever.