Month: December 2016

lapses

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Now that I am attempting to resume my interrupted life, I’m discovering a few things. Earlier in my life, I had many surgeries, mostly for having a reproductive system, but also cryosurgery to repair a torn retina and ACL replacement. After each of those surgeries, there was a period of time that I simply lost. Things were misplaced. Bills were not paid, or paid twice. Books were read and completely forgotten. Lyme brain fog is an entirely different animal. If I ever wanted to know what early Alzheimer’s, psychosis, deep depression or OCD were like, I’ve found out. Lyme mimicked all of those things at one time or another, sometimes at the same time. My brain was, quite literally, inflamed.

I’ve struggled to explain what an inflamed brain is like. At one point I felt as though I were on tranquilizers and paralytics while drunk. Other times I felt as though I were on a never ending acid trip while severely depressed. There were still other times that I felt like I was coming out from general anesthesia. None of it was pleasant. It also lasted for SEVEN MONTHS. Not every once in a while. Every. Single. Day. If you saw me during this time, count yourself as one of the few. I hid myself away as much as possible. I had hours of lucidity, the occasional rare day of partial sanity. That was almost worse, because I would realize what was happening.

These were the months of scribbling in my notebook, trying to keep track of what was happening to me. These were the months of letting Katie lead me around the grocery store, helping me make decisions and handling the payment and bags. These were the months of moving from my bed to the sofa back to bed, watching bad tv or listening to music or simply existing, like an eggplant or something.

I haven’t always lead with my brain. I don’t know why not, other than I took my brain for granted. I have never taken my looks for granted. Is there a difference in the way men and women are rewarded for having brains? Most certainly. Are some people threatened by other people’s intelligence? Definitely. What I didn’t realize is how much of my personal identity is tied up into being smart. It is probably the most valued asset I have (that, and my optimism). To lose what you perceive as your greatest strength is devastating. You can’t articulate what your fears are because your fears have come true: you’ve lost your marbles.

The nice thing about an inflamed brain is that you’re not quite aware how fried you really are. Things sort of melt away. Days drift along, one much like another, a wet, gray blanket of blankness. The minute you can think, depression and anxiety crowd out rational thought. For me, medical marijuana and bad television made the worst days if not tolerable, survivable.Schedules and goals, no matter how small, helped, too. Get up. MAKE THE BED. Make coffee (Decaf now <SIGH>). Eat something. CLEAN THE KITCHEN. Go back to bed. Sleep. Get up. Stare at the TV (it’s interesting that, like everything else from this time, I have the memory of watching but none of the details). Try to walk the dogs. I actually accomplished this almost every day, even if it was less than a quarter mile. The dogs have been stalwart companions through all of this, and  their companionship made my life immeasurably richer. Unconditional dog love is real, people!

My mental faculties are returning. I still have lapses. I talked to a patron at the pool this week. She asked me if I had read Eudora Welty. Of course I had, I knew this as a certainty. However, I could not recall one title, one plot line or character. Holes remain, and I don’t know if they will refill or simply disappear. Memory is a slippery creature at best, Most of us simply trust that what we remember is true, we don’t delve too deeply in the mechanics that make it so, nor do we give credit to memory as personality. After all, who are we if we don’t have memory and thought? I lost both temporarily, and it was like I had been erased.

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holiday

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As Christmas approaches, I am entering another year of purposely downplaying the holidays. I know, call me a Grinch if you want, but I bet my Christmas is way more relaxing than yours. This idea that holidays are the end-all be-all of everyone’s life has always rankled. My dad is notorious for disliking almost all holidays—not the idea of the celebration (except for Mother’s and Father’s Day, in his mind these were made exclusively for selling crap and making kids and parents alike feel terrible), but the way they have been hijacked by marketeers and mothers intent on torturing everyone with picture perfect spectacles that no mortal can match. In reality, except for astronomical events (solstices, meteor showers, eclipses) there is nothing TO celebrate that is real. It’s all made up. Except birthdays. Those are real,  but after thirty, celebrating  that I was one year older didn’t really make me all that happy.

Katie likes to joke that every day is Christmas, and in our family this is kind of true. We buy what we need and occasionally you get something special. While she was growing up, I made sure every holiday was celebrated, decorations, food, gifts, etc. I wore myself down trying to live up to whatever expectations I placed on myself. We all bring our personal baggage to this process, my ex and I were no exception. There was the annual holiday light fight, the drunken July 4th, the disappointing Valentine’s days, but there was also lots of fun. We made our own traditions and enjoyed them a great deal, until we didn’t. Life changes, and if you’re not ready to roll with that, holidays amplify those changes, both good and bad.

Six years ago, after my mom died, I didn’t feel like celebrating. My marriage was going downhill fast, Katie was gone, and there was nothing we needed. Oddly enough, it was a good Christmas. By not trying to live up to what I expected of myself, what marketeers, songs, and movies told me I should want, the day was quiet. We hiked, had a nice breakfast. We opened the few presents we got, everyone was content.

After I got divorced and started graduate school, the holidays were quiet by choice. All of them. Halloween, Fourth of July, Thanksgiving, and Christmas. Let’s not even talk about Valentine’s Day, my least favorite holiday of all. I’m not against holidays, I have simply discovered that there are many ways to celebrate (or not). If it was hard on Katie, she didn’t let on. In fact, she swears that she is quite happy with the way things are. We sneak off to the museum on an off day, buy each other a puzzle and have lunch. We buy our few Christmas gifts on Cyber Monday and wrap them together (Katie is a world-class gift wrapper). We are extremely close, and no declaration on holidays will alter that one way or the other.

Last year, I spent Christmas Day alone, sick with Lyme. It was no big deal, at least not to me. My dad certainly understood. Katie worked. She has worked the last three Christmases and Thanksgivings. Why not? We just pick another day to do our dinners, open our presents. The day is designated by us, not the calendar. Most people just can’t believe that I am satisfied with this arrangement. It’s kind of like my drinking friends can’t believe I don’t care much for drinking. I don’t care. At this stage in my life (almost post-Lyme, fingers crossed!), I can do whatever the hell I want. This includes not eating all the food people foist on you at each and every holiday, not dressing up in costumes, not buying unnecessary gifts, or sending cards (sorry, I’ve been bad at that since forever! But I don’t mind if I’m off your list…). What I’d really like for Christmas is to be well. What I’d like for any day is to be well. I’d also like to never hear “Grandma Got Run Over by a Reindeer” ever again, but we can’t always get what we want.

This is not an indictment of the way you celebrate holidays, nor is it an endorsement of the way I celebrate mine. I’m happy with the way things are right now. Like all things, it will change. Until then, this year is a music year. Bring on the Christmas carols! On Christmas day, however, I just may go eat Chinese food, and if I feel good, it will be the most wonderful day of the year.

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stamina

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I have lost my stamina. I’ve become the person others look at to feel better. You know, the “my life sucks, but it could be worse, I could be as sick as Melissa” line. I know, because I’ve done that. Haven’t we all? One of my guilty pleasures used to be “Toddlers and Tiaras”. Yes. It’s horrifying. But I had the satisfaction of knowing I wasn’t one of those  moms. It’s disconcerting to be on the minus side of the equation. You walk this line of wanting to appear strong and in control, but also being honest about being ill. It is shocking how much energy Lyme uses up. At the height of my illness, November through March of last year, there were days when stepping into the shower required a pep talk. There were times when Katie had to drive me everywhere, carry my purse and all the shopping bags, and sometimes handle the transaction (I’ll write about how I lost my mind…I’m simply not ready for that yet). I will be forever grateful to her for how she stepped up. I’m just now realizing how hard it must have been on her, seeing me wander through the house, dark circles under my eyes, a shadow of her once indefatigable mother.

On one of my doctor visits this June, we discussed what I could and couldn’t do, because I was starting to feel better. As in all things Lyme, it depended. It depended on how I felt that day, what meds I was currently on, how my liver was functioning, how hot is was (Lyme patients are notoriously sensitive to heat), etcetera, etcetera, etcetera. I was given a few guidelines. I could swim, but start with 300 yards and no more than 500. I could play pickleball, but be careful. I could go back to work, but not full-time. He cautioned me several times about doing too much. Of course, I ignored some of the advice. What did he know? I had stamina! HAHAHAHA! Lyme likes to fuck with you, and the joke is always on you.

By mid-July I was in full relapse mode. It was as bad as it had ever been. Damn, I was pissed! And humbled. If you’re not humbled by Lyme, you have an ego of Trumpian proportions. There is something powerful about hitting bottom. If you’ve never been there, I’m not suggesting a ride down, but if you’ve found yourself there you know what I mean. I wallowed down there a while and reached the strange nexus of choosing to rise and also not giving a damn. You get stripped down to what matters in your life. The problem for me is as I rise back up, I start to give a damn once again and I second guess myself. Worse, I let myself hope without any expectation or guarantee that what I want will happen. This messes with my head. I’m not the same person I was before Lyme. I had stamina. The definition of stamina is “the ability to sustain prolonged physical or mental effort.” Well, I could sustain the prolonged physical effort of surviving at the bottom for a long fucking time.

But what if there is no bottom, just a boulder to push up an endless hill? Don’t we all feel like life is a Sisyphean punishment sometimes? I hit a point where I could see, for the first time, the possibility that ending your life could be preferable to suffering. This is quite different than contemplating suicide. It’s the acknowledgement that everyone has a point where the suffering is too much to bear. At what moment did I choose to crawl upward, Lyme be damned? At what point of suffering would I give up? I would never put myself in a position to get Lyme again (although I’m sure I could bear it—we can all stand much more than we think).

Stamina has a cost. I am weaker that I was. I have to plan for the possibility that Lyme may have altered my life irrevocably. I have no idea what the future looks like. I hope there’s love and happiness and meaning and purpose. I need stamina to create this reality with what is left after Lyme. And I want to get back that “I don’t give a damn” attitude, because I was fearless. I haven’t lost all of it, but doubt creeps in. I’m not a shadow of my former self.  I’m morphing into a better self. It is as hard as being sick. Sometimes it’s harder, because I was already pretty great. HA! There’s that I don’t give a damn attitude. I’m going to need that. And stamina.

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symptoms

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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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presentation

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I have started dating. No reason, whatever was holding me back isn’t anymore. For me, decisions like this one are generally stewed over for a while and then, poof! the switch is thrown. Once thrown, it’s full steam ahead. Dating at 58 is no different than 18, emotionally. By 58, though, you have to worry about presentation. Presumably, you’ve acquired some wisdom and baggage by now, and daters want to know more concrete things about you (unlike young dating, where loving the same band might be the basis of a relationship). Also, it helps to know what you want and what you need. Oh, and who you are. Easy-peasy. And there’s the whole Lyme thing to explain: “Yeah the last year I’ve spent being sick. With Lyme. Uh, nothing else, just being sick.” I’ve met a few guys for coffee and here is what I’ve discovered: I’m an intellectually complex person with pretty simple wants. I’m not ambitious, career-wise. I want to write and have people read what I write, but there is no ego involved with what I do to make money. I lifeguard, right now. It’s what I can do. Am I anti-feminist if what I want is to take care of those close to me at the expense of a job? Am I regressive if I am happier and more comfortable being the woman behind the man? What value do we really place on that person who provides a warm place to land at the end of each day?

I’m financially stable, so I don’t want to depend on a man, but how do I convey this part of myself without sounding like a Stepford wife? All of this is complicated by my family history. Both my birth mom and mom were driven, accomplished women at a time when having a real career was unusual. Does my simpler needs dishonor the obstacles they faced in earlier times? My choices in my marriage come to the forefront. I have to own those, and realize that the ridiculously old-fashioned role of ‘housewife’ suits me. Actually, I prefer the older term ‘chatelaine’ which means mistress of the house. Done properly, there is always toilet paper, food, and other necessities. The sheets are always clean, the house well-ordered and fresh-smelling. There are no take-out menus or frozen dinners. Paper plates are not used except at cookouts. Sure, you can pay someone else to do all of these things or not be bothered by not doing them, but there’s a reason this role is both revered and reviled in our society.

As in all things, it all depends on your perspective. If you feel honored, valued and respected, almost anything is satisfying. One thing I’ve learned through getting older and having lots of time to think (Thanks, Lyme!) is I can embrace my nature. This is who I am. I believe there are men out there who would like to match wits with one of the world’s more complicated housewives. At least I hope so. When you’re sick for a long time you lose all sense of self, and a good deal of self-confidence. Presentation becomes a minefield of being totally honest and not scaring someone off immediately. Oddly enough, I don’t care a thing about age. As in, I am 58. Deal with it. I do care that I look healthy, happy and like I take pride in my appearance, but a girl like me will only do so much. I will not do plastic surgery, botox, anything artificial, or hair color (but I have so little gray that it’s weird!). I will do makeup, perfume and excellent foundation garments. A good bra is worth every penny. Sooner or later, if I meet someone, they will see the real me. I’d rather it be sooner.

I have dealbreakers. Don’t we all? I don’t like mean people. I like someone who’s comfortable in their own skin. Cars and stuff don’t impress me at all. Brains do. What you read and the music you like matter, to a certain extent. If you love motorcycles, skiing and football, we’re probably not going to be soulmates. And then there is chemistry. That’s…like lightning in a bottle? I’ve only experienced that rush once in my life, that instant connection. I’d like to have it again, but am I willing to wait as long as that takes? I guess we’ll see. At my age, and especially after Lyme, I want that, dare I say I deserve it? Yes. I dare.

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