Month: February 2017

hope

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I spent yesterday afternoon in a room full of Lyme patients. It was the first time I had been around so many Lyme sufferers. We were all gathered at the Tattered Cover to hear Dr. Richard Horowitz. For those of you who don’t know, he is a demi-god in the pantheon of Lyme doctors. He’s written two books, Why Can’t I Get Better: Solving the Mystery of Lyme and Chronic Disease, and How Can I Get Better: An Action Plan for Treating Resistant Lyme and Chronic Disease. His first book came out in 2013. It was one of the first purchases I made when I realized I had Lyme. I didn’t get a lot of it at the time, and I skipped over parts that didn’t affect me (I had to go back and reread some of those later, as Lyme careened through my body). I slogged through the dense science along with the case studies. And I felt hope. This book covered everything. He believed Lyme patients could get better and even thrive.

Time passed, and I started to lose that hope. Every time I felt like I was getting well, I had a relapse. “I’ve turned a corner,” I’d say. I had, too. Right into another fucking ditch. Hope slipped away because the trajectory of Lyme is not lineal, it’s  a jagged zig-zag. This is not a pity party. It’s an attempt to share how easy it is to lose sight of health.

I knew the book store would be packed for Dr. Horowitz. He is a physician in the truest sense of the word. When his patients don’t get better, he considers this not a failing, but a chance to be a medical detective. His journey as a Lyme guru started thirty years ago, in the Hudson Valley of New York, now one of the most Lyme-infested areas of the US. Hearing his excitement about new protocols was infectious (pun intended). Seeing that many seriously ill people was, in a strange way, comforting. Why do we feel better seeing others who suffer like we do? There’s that feeling of immediate kinship: this person gets it. There is also a less attractive side to this. Several people were in wheelchairs, or had to use walkers. Some of the people looked dreadful. For me, it’s less about misery loves company and more about I’m slightly less miserable than the rest of the company. Shallow, I know, but there it is.

Dr. Horowitz provided hope to the people listening yesterday. Hope may be the most powerful drug there is. Love is also important. People get better for the ones they love. The combination can be potent. I was one of the few ‘singles’ at the book signing (even Dr. Horowitz was part of a couple, he travels with his wife, a Lyme sufferer herself). There were parents and children, boyfriends and girlfriends, and married couples huddled together. I could immediately tell who had Lyme, because I was struck by how protective the healthy person was towards the Lyme sufferer. I have my dad and Katie, but I prefer to battle on my own with Lyme. Well, maybe not ‘prefer’, but that’s the way it is. No, I take that back. I DO prefer to work this out on my own, mostly. I don’t like to be coddled. There was lots of coddling yesterday.

For the life of me I can’t figure out why more physicians don’t view disease the way he does. Something happened to the way physicians practice medicine between the great gains of the early twentieth century and now. Probably not one thing, but several. The one frightening fact he pointed out is the alarming rise in chronic illnesses. Why? What are we doing about it? Chronic illness is crazy expensive on three levels; personally, monetarily, and societally. I’ve experienced all three these last two years and it is not pleasant. The cost of untreated or poorly treated chronic illness is astronomical. One girl, who is now fourteen, got Lyme when she was six. She went to over fifty doctors before she got the right diagnosis. What that must have cost her family, I can’t imagine. She was lovely, though, thankful that the newest pill Dr. Horowitz prescribed was ‘tiny’. I feel her pleasure in that. I don’t want to brag, but I can swallow up to seven large pills at once. Impressive, I know.

Anyway, today I feel better than I did yesterday morning. His message gave me hope, and hope makes me feel better. One caveat: people ask if one can be cured from Lyme. Dr. Horowitz used the phrase “knocked the load down” several times, and never said the word cure. He talked about herbal protocols to “keep the load down” if symptoms creep back. I asked him about that as he signed my book. “Is that the euphemism you use to dodge the question of a cure?”  I asked. He smiled. “For now,” he said, “but not for always.” Hope. It’s a powerful thing.

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deflate

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My favorite! I didn’t think anyone noticed this particularly delightful symptom, but they do. It’s when you feel pretty good—you’re shopping for furniture or at a concert at Red Rocks, or just playing pickleball when WHAM! Deflate. I’ve been thinking about exactly what happens, and how perceptive people can notice so quickly. I’m a fairly high energy person, sometimes hyper, even (feel free to correct me if I’m wrong, friends), so when I am quiet and still, it isn’t normal. The Lyme deflation is swift and complete, reducing me to a zombie-like trance. In the space of less than fifteen minutes I can go from peppy and happy to paper-doll flat (I really should insert a Tom Brady reference to Deflategate here, but I can’t think of one. Feel free. Really.).

Today I deflated an hour into playing pickleball. I have had a lot of bad days lately, not sure why, but am I ever sure why? The symptoms have all risen to above my neck. I still have liver pain, kidney pain, joint pain and fatigue, but those are all intermittent and no big deal. It’s the brain/eyes/teeth trifecta that make me miserable. For the past three or four weeks, my eyes have been wonky. My left eye has this giant grey floater that swings from side to side, daring me to shift my eyes from side to side, like I’m watching a bizarre tennis match inside my eye. It drives me crazy. I’ve had eye problems since the beginning of Lyme. Itching, burning, an eyeball ache, floaters, blurry spots, ghosting in my peripheral vision, and now this big grey glob in my eye.

I was playing okay, I was in a bitchy mood, which is not uncommon. I had energy and made most of my shots. About an hour in, my eyes acted up. I rubbed them and they teared and burned and that damn glob swung back and forth, distracting me from the ball.  Within minutes  my head pounded and my energy dissipated. A fullblown deflation. Two of the three players I was with stopped and asked if I was okay. Wow. I didn’t think I looked different when I deflated. As I left the court (after losing, goddammit!), I said I wasn’t feeling too well. They said they noticed. Others noticed when I gathered my things and walked out.

Why am I unaware of my own deflation? I mean, it’s happening to me, you’d think I’d notice. Perhaps all my energy goes into maintaining my composure while out in public. If I’m home and I deflate, I can collapse on the sofa or in bed and not worry. If I’m out doing something, it’s different. The energy it takes to simply walk or speak is almost out of my reach. I’ve been thinking about when I see this kind of collapse in others. A small child deflates naturally, several times a day, either into sleep, or a tantrum, or more often than not, a stupor. Maybe that’s what people see happening to me. I can stupor with the best  of them!

The silver lining is I’m not super aware of my collapse. I can acknowledge my decline and be aware that I have to get home. Other than that, my ability to respond to other people is pretty much gone. I think because I am usually gregarious and very tuned in to the moment I might get a bit of a pass from most of my friends. At least that’s what I hope.

I made it home, and now I am dressed in my favorite sloppy outfit, ensconced in my magic blue writing chair and high as a kite. Medicinal marijuana is a gift from nature. Don’t knock it until you’ve had Lyme. I hope this particular deflation doesn’t last too long. Hey, another silver lining: this may be the first time I have stayed coherent during my collapse! If you are my friend, don’t correct me on this one, please.

 

 

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mom

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My mom. Were there ever two words with more baggage? I have two moms: my biological mom and the mom who is my mother. I can’t imagine what it would be like to adopt three children, let alone get them all in one year. First, my brothers. They were biological brothers from an orphanage in Germany. I came along a little more than six months later. One of my earliest memories of my mom is learning how to read using flashcards that she had made while my brothers were in school. Another memory is falling asleep to the sound of her practicing the cello. Both good, warm memories.

We were temperamental opposites. I am impulsive, outgoing, intuitive, lazy, and unambitious (I know there are more). She was driven, careful, painfully introverted, and the most self-disciplined person I have ever known. How did we end up having such a close, loving relationship? There was a lot of common ground in the middle. We shared high IQs, a passion for music and reading, and the love of a well-ordered household. Okay, that last one was a long time coming. We had a protracted war over housecleaning until I moved out.

As soon as I reached the age of reason (twelve or thirteen, or maybe never, according to some friends) I realized my mom was not like the other moms. This was a source of both embarrassment and pride.  Pride,  because she earned a PhD in biochemistry and went back to work when I started sixth grade. She was also an accomplished cellist. Embarrassment, because she wasn’t around, like other moms, and I knew some of those moms felt sorry for me.

I remember her cursing only twice. Once, in sixth grade, I missed the bus and she had to leave her lab in the middle of a timed experiment. “Damn you, Melissa” was as bad as it got. The second time she said that, I also got a slap in the face. I deserved both. I deserved worse that that, because I threw out the line that was sure to cut into her heart: you’re not my real mom. I must have been fourteen or fifteen that time. Is there a shittier age for mothers and daughters than eleven through sixteen? Why do so many of us make our mothers miserable at those ages?

Sometimes my dad had to step in. He was the one that explained when things were out of place mom got physically ill. He was the one who swooped in and put me in my place when I got too lippy. I’m naturally closer to my dad, we go together like peanut butter and jelly. Mom and I had to work at it.

I would say my parents marriage was a solid, loving one. There was true devotion on both sides, a quality that sounds quaint in today’s vernacular of love. There was no yelling or fighting (they had ‘disagreements’) and no one behaved badly. If you are old enough to remember Heckle and Jeckle, you’ll remember their schtick of exaggerated politeness (“Let me get the door”, “No, let me”). That was my parents, without the irony.

It was in 1993, six years after Katie was born, that things started unraveling for my mom. Dad commuted from Memphis to Denver for two weeks every month. The other two weeks he spent gardening, playing golf and taking care of the house. Mom worked full-time and played the cello two or three nights a week. She never weighed more than one hundred pounds, but she looked thinner than usual when we visited. “Don’t tell your dad,” she whispered, “but I’m at ninety pounds now.” Every visit after that she weighed a little less. She fell and hit her head. They moved to Tucson. She fell and hit her head again. Anorexia took over their lives, an endless series of rituals and schedules revolving around food.

I don’t know how my dad dealt with her anorexia. I vividly remember a heated discussion we had towards the end of her life. She was below seventy pounds by now, and my dad’s whole life was taking care of her. I was there for weeks to help out with some crisis (it’s funny that I can’t remember which one, maybe self-protection?) and my thought was that he needed to get help for her. How naive I was. He told me quite forcefully that he had made the decision to do what she wanted and needed, not what he wanted for her. I had no choice but to respect his choice. Through the lens of time, I can see this decision was the more difficult, but humane one.

It would be easy to let anorexia define my relationship with my mother. I’ve struggled with the whys and can’t come up with anything, because she didn’t tell me anything. I didn’t keep many secrets from her, except the huge one of my brother’s physical and sexual abuse. Maybe she did the same for me. I miss her. I miss her more than ever now that I have Lyme. Mom also nearly died from ovarian cancer when she was just 43. She developed crippling rheumatoid arthritis when she was 50. Never once did I hear her complain. She woke up every day and worked hard at life, a lesson I learned by watching her actions. I will always feel lazy compared to her. I will always admire and love her.

 

 

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