toil

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.

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bumbling

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.

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symptoms

I don’t write much about the symptoms of Lyme. For one, it’s a rather long list. For another, who really cares, except for me, who experiences them? But I’ve been thinking about symptoms lately, because now that I’m getting out more, people ask me what my symptoms were. I kind of hem and haw and tell a light anecdote to give them the picture. Here’s the big problem: there are over one hundred symptoms for Lyme (http://www.anapsid.org/lyme/symptoms/ , http://www.lymenet.org/BurrGuide200810.pdf). Lyme mimics fibromyalgia, MS, ALS, Parkinson’s, Alzheimer’s and up to 350 more diseases. To try and standardize the list for all patients is impossible. I never had much problem with arthritis-like swelling and pain, where others are wheelchair bound. Every Lyme patient has their own peculiar set of symptoms.

Taken one by one, most of the symptoms aren’t that bad. Combined, though, and suffered day after day after day, they wear on you. The final insult comes when you start treatment. You get sicker! Woo-hoo! Nothing like endotoxins and side effects to ice the cake on sickness. I’m not sharing this for pity. I don’t want to hear “I’m so sorry you’ve been so sick”. Well, maybe I do, sometimes. What I want is to help anyone avoid Lyme in the first place. I want people to understand what Lyme disease can become if not caught early. The physical, emotional and financial toll is too high stand by idly.

I keep journals. I have kept them off and on for the past twenty years, but I’ve been fairly consistent post-divorce. There is a row of notebooks in my office, each one filled out from the top of the first page to the bottom of the last page, front and back, no paragraphs or indents. Just words. The ones from living with Lyme this past fifteen months give me a glimpse into my sickness, in case I want to forget.

Okay, here is one from  December 8. It was crisp outside and my one goal for the day was to walk the dogs. I had returned from New York where I was diagnosed with mid-stage Lyme disease: borrelia burgdorferi, babesia , and bartonella. I had fifty-six symptoms checked off. One of the worst was an abnormally slow heart rate. That morning I shuffled one quarter-mile. I have a pulse rate app. I did it three times during the walk. 42. 88. 44. I talked to myself, told myself I could do this. Every bone and muscle in my body ached, I had foggy spots in the middle of each eye. My teeth hurt, as did my head. I had to stop twice because of dizziness. I made that damn walk. I went to bed and slept. I woke up and took my meds (I’ll write a blog about that soon…it’ll blow your mind). I watched the Hallmark Channel (still trying to figure that one out!). Cried. Ate. Went back to bed. And that was all the entry said for that day. I’ve paraphrased here, because much of my journal writing is a stream-of-consciousness blast of cheerleading and venting.

You get the picture. Telling this out loud, in public, is almost as terrifying as taking off all my clothes in public. Why do I balk at talking about this? Was it my parents’ no nonsense midwestern sensibility? My own bias towards sickness and sick people? What? I can’t figure this one out. Maybe it has to do with whining? I am NOT a whiner (I’m a bitcher, but that is a whole different skill set). Or the ‘poor me’ syndrome. Awful. This brings me to play time. Now that I’m getting better, I am eager to date, to play pickleball, see friends, get out and do something. Well, what should happen but guilt. Big chunks of shoulds and have tos weighed me down. I should be working if I feel better. I have to get this yard in shape and take care of business. I bitched about this problem (curse words were involved…see the difference from whining?)  to my therapist. I’m pretty sure he answered with a question. “Why should you feel bad? Don’t you deserve to have some fun?” W.T.F. Have fun? Was he mad?

I felt a tremendous sense of guilt about being sick for so long. After all, if you are sick, you are not being productive. And not being productive is a sin. A mother’s definition, America’s definition, and mine, apparently. So. I am working on this notion that it is okay to have happiness after a long illness. I don’t have to plunge into everything, all at once. I played pickleball this morning. It made me happy. I saw old friends and felt the heady rush of playing a game. The rest of the day has been better. I’m actually working harder in between bouts of playing. It could be that play is vitally important to recovering health. Play gives me a truer taste of life as it was. Life has been lots and lots of watery gruel the past sixteen months. I’m ready for spice and comfort food.

 

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