FOR THE REST OF US

TV is not all junk. Or at least, sometimes it's good junk. Seinfeld was my lifeline during the darkest years of my illness, and this holiday season I've been remembering fondly one of the best episodes, the one about Festivus.

Festivus is a winter holiday Mr. Costanza invents when he is fed up with Christmas. (Who hasn't felt that way from time to time?) There are no gifts. The only decoration is a metal pole, the only traditions are The Airing of the Grievances and The Feats of Strength.

(Still not sure what Festivus is? click here.)

This year I've been feeling the Festivus spirit rather than the Christmas spirit. To start, I couldn't get into gifts this year. I've been busier than I should be with the house I just bought, which is undergoing remodeling for energy efficiency and a few modern conveniences (like a shower), and meanwhile I've been feeling that we all have plenty enough stuff. The drive to have more and more stuff has lead the country and the world into economic and ecological disaster, and I'm just not feeling it that the solution is to go out and buy more.

I thought I'd found the perfect solution to my gift quandry at the eco-house remodeling store: energy saving outlet extenders. I bought one for everyone in the family and had them shipped back to DC.

"Don't expect much, there more like Festivus presents than Christmas presents," I told my relatives.

The only problem: the eco-store mixed up addresses and two days later a big box of outlets arrived on my doorstep in Seattle. So no presents for my family after all-- even more in line with the Festivus spirit.

Meanwhile, at the new house a mysterious metal pole, secured in a cement base, stands tall in the back yard. (Here it is in the picture, to the left of me. It's a bit difficult to see.) "What's that?" a recent visitor asked. It had me baffled as well, but suddenly it clicked, "It's a Festivus pole!"

My brother got into the swing of things tonight and wished me happy Festivus when we spoke on the phone.

It turns out we aren't the only ones remembering the holiday. In Washington DC, one neighborhood has dedicated a few outdoor bulletin boards to The Airing of The Grievances, and in my own Washington State, a Festivus display went up at the state Capitol Building.

The Poet and I got a laugh out of this reaction. Enjoy!

PILLS

Each day I wake up in the early morning, when it is still dark—sometime between 5am and 6:30. As I disentangle my mind from my dreams, I notice that my jaw is clenched and the back of my head feels tight. I hear The Poet snoring in the bed beside mine, or I turn over and see he is reading in the silver glow of his book light.

I go the bathroom, come back to bed and take about twenty pills, the smallest the size of a caper, the largest more like a blackberry. I swallow a half-spoon of ginseng powder that I measure out in a 1-gram-sized spoon, and I drink down a large glass of vitamin C solution, which I mixed up and brought to the bedroom the night before. There is also the sea salt I keep in a glass jar by my bed so I can scoop it up in another 1-gram spoon and wash it down with the vitamin C.

Within a few minutes I feel a gentle release of the tension that has built up in my body while I was sleeping. I grope around for my eye cover, put it back on, take a few drops of a homeopathic medicine and go back to sleep for anther two to three hours, if I’m lucky.

When I wake up I go to the kitchen to mix a drink of grapefruit juice, amino acid powder and magnesium solution. Then after breakfast I take another ten pills. At lunch I take fifteen more, and at 5pm I revisit the amino acid powder and grapefruit juice, along with six or seven more pills. Of course dinner and bedtime are accompanied by their own sets of capsules, and after lunch, right before I take my daily nap, I mix ¾ of a teaspoon of chlorella into water and drink it down with capsules of olive leaf, B-vitamins, and another half spoon of ginseng.

There are injections as well: heparin to thin my lumpy blood and bicillin to kill off the Lyme. These two are prescription medications, and one of my pills, the Diflucan, is also a prescription. The rest are all nutritional supplements.

On Mondays I take out all the supplement bottles, which I keep in an IKEA box, and I gather up the empty pill boxes and fill them with the supplements for the coming week. I learned early on that if I do this sitting at a table the pills will inevitably spill, roll off the table and onto the dirty floor and be wasted. Now I spread a towel and then a clean cloth on the floor do the operation there. It takes me about an hour.

At last count I had twenty nine bottles in my IKEA box, and most of those I take in multiples of three or four a day. I’m probably taking over 100 pills a day, but I haven’t counted. I don’t want to know. I have a sneaking suspicion that no one in the world is taking as many pills as I am, not even other people who have Lyme, not even other people who have Lyme and live in Seattle, where going to the naturopath and taking supplements is more common that going to church.

Taking this many pills is absolutely preposterous. As is the case with many preposterous things, no one planned it, it just evolved. At first Dr. X put me on a few supplements—B vitamins, magnesium. amino acids. I felt less moody and more energetic. When I started iodine, I slept better. In a little bit I was taking a multivitamin as well, then an ayurvedic herb, which balanced my blood sugar and thus kept me from feeling like I might pass out when I got hungry, and so on.

Once I hit a critical point, things changed for me. I was able to stand up long enough to do the dishes, then I could walk the block and a half to Starbucks. Soon enough I could grocery shop, and cook for myself, and even simply go for a walk in my neighborhood. Taking all the supplements was a pain in the rump, and expensive, but given the alternative of lying in bed and aching all over, I didn’t mind.

I was already taking about twenty supplements when I started my antibiotics. At that point all hell broke loose—racing heartbeat, bouts moodiness, and of course insomnia. With every new antibiotic I’ve had trouble sleeping, and Dr. Ross or Carolyn has added another supplement to help. And it does help—and meanwhile, the number of things I take has gotten larger and larger.

So I can remember to take everything at the right time, I keep some pills by my bed, others on a shelf beneath the TV, and others on the kitchen table. I’ve tacked a piece of patterned cloth across the bottom half of the kitchen window, for the express purpose of blocking the sun from shining through onto the bottles and pill boxes I keep there. Too much sun and heat is bad for supplements.

The last time I stopped taking my B vitamins, I became so exhausted I had to call The Poet to pick me up in the car when I couldn’t make it home from a close by coffee shop. When I forget to take my dinner supplements, I don’t sleep well. I often cannot sleep well if one certain pill—iodine, for example, or magnesium-- doesn’t make it into the boxes.

As one might expect, I rarely miss a dose, and I make sure my bottles don’t go empty before I buy replacements. There are days when most of my time and energy goes to organizing pills, ordering pills on the internet, driving to the store to buy more pills, emptying the cardboard boxes that pills are mailed to me in, and of course taking the pills themselves. As in Julio Cortazar’s short story about the watch, the pills no longer belong to me-- I, in fact, belong to them.

On the other hand, I am doing fairly well even while on a grueling antibiotic regimen. My liver function has always been good, my blood cell count is in the normal range, and I am able to sleep without prescription medication. I go swing dancing twice a week, and I go for long, hilly walks on other days.

I am dependent on my parents to pay for all the supplements, but I am not dependent on anyone to cook or shop for me, or do the dishes for me or drive me places, and that is a blessing.

All this belongs to the pills, just as much as I belong the pills, and although I would rather not belong to them, I am also grateful that I do.

CHIEF NOURISHER IN LIFE'S FEAST

"Sleep no more! Macbeth does murder sleep..."

If I could sleep soundly eight hours each night, this illness would be fine. The days when I've slept well my energy is at about 70% of normal, which is pretty good in my book. The problem is, each time I think I have sleep figured out, with the right combination of supplements at the right time, and the ideal amount of exercise, etc, it lasts for about two or three weeks and then the insomnia kicks in again.

For the past week my record has been one good night's sleep out of two. Normally, I would have been at my naturopath's days ago, asking her to sort it out-- what pills to increase, what to decrease, when to take things. The only problem is we have been hit by two big snow storms, and Seattle does not plow the streets when it snows. My hilly street is iced over, and the naturopath is very far away over more streets that I'm sure are covered with ice.

So I have been trying to figure it out myself. The sauna has always been my guarantee for sleep, so I've been sure to go for a good sweat several times a week. Yesterday I trekked over icy sidewalks to get there, but I still slept only 6 hours last night.

Vitamin C, as well, usually helps me sleep, but now I'm maxed out on it and it's only helping a little.

Switching back to injecting my heparin twice a day has helped, but I am afraid to do this more than every other day. In the early morning I tried taking some extra B vitamins, and this helped-- I slept for a half hour afterwards, but once I took another dose, I couldn't go back to sleep.

I am an old hand at insomnia. I no longer panic or have those paranoid thoughts that usually kick in when you're up in the middle of the night. But it's still a drag. I can barely do anything when I haven't slept enough, and I go through the day like a zombie.

Of course, that's why it's called sick. It's not supposed to be fun or comfortable. My best moments on an exhausted day, like today, are when I look at it realistically and tell myself, well, this is just part of the process of getting better. The antibiotics have my biochemistry constantly in flux, and that causes insomnia, and that's all part of Lyme disease, which is, after all, what I have and what I'm working so hard to get over. Insomnia is basically just work for me.

Still, if I don't figure it out soon, I will trek down the autoparts store and buy chains for my car and I will brave icy bridges and risk accidents and getting trapped on blocked roads, I will do what it takes in order to get the naturopath.

AND THE GODS SAID HA!

I declared victory too early yesterday. I tried going jogging at 6pm, and stayed at it for about 30 minutes, feeling energetic the whole time. Clearly, I have strength to do it. However, it also set off a reaction afterwards that kept me up until 4am.

Either it depleted too many nutrients in my system or set off a Lyme bacteria die-off reaction. I had that wide-awake-and-tense-for-no-reason syndrome I usually get after a big dose of a new antibiotic. (Perhaps by jogging I just circulated the antibiotics through my system more effectively than usual?)

I took extra vitamin C and B vitamins, which usually help me to sleep. Then on a whim I tried extra olive leaf, and finally at 4 I took a big dose of magnesium and that did the trick.

I didn't feel weak or exhausted today, as I thought I might. Instead I just felt sleep deprived, extremely sleep deprived. Woops.

So I will stick to brisk walks and dancing for now. If I have to run for any reason, I'll head straight for the magnesium when I get home.

JOGGING

When I've tried running before, months ago, it was just in circles around the house in case I got tired, and I took lots of breaks. Today I went for a real run. I ran 80% of the time, and walked when my legs felt a little heavy (mostly halfway up the hills).

I started the timer when I left the house. When I got back, it read 27 minutes! I did some sit ups and then jogged and walked another 10 minutes up and down our block.

It's four hours later now and I'm feeling fine. I'm off to bed.

Change

Last night was Nora’s birthday at Smokin’ Pete’s in Ballard. (I highly recommend this barbeque place that serves local, naturally raised meat.) I sat next to Nora and talked with her and her friend Betsy, while The Poet, on my left, was engrossed in a raucous banter with the people at his end of the table. We heard occasional snatches of their conversation—they were all laughing.

“Look at him,” Betsy said, not knowing The Poet was my boyfriend. “I don’t know what he’s talking about, but he thinks everything is funny, and he’s getting everyone else to laugh, too.”

She was right, of course, and she reminded of me of how lucky I am. The Poet and I have been through difficult times, but now our relationship is stronger than ever, and the past several months I have felt wrapped up in a continual conversation with him, one about reading and exploring ideas and caring for people and never forgetting to laugh.

Every day I think of how lucky I am—to live in our beautiful apartment, just big enough for the two of us, with a view of downtown, Lake Union and Mt Ranier, and to be in a neighborhood that’s a few minutes’ walk from everywhere I need to go. I have my friends around me, I am starting to write again, and when I walk up the hill to our house I can feel strength in my body that for years was gone.

Everything, everything, is in its place right now. But today when I woke up The Poet told me he had finally made a decision: at some point in 2009 he will go back to Egypt and stay there for a year.

I wasn’t surprised. For the past year he has been coming closer and closer to burn out at his job. He likes working in software, and he likes his company, but he has enough work for two of him these days, and the weekends are not enough time for him to read and write. He misses Egypt, and has been trying any way he can to take longer vacations in Cairo. He comes back from Egypt saying he can’t wait for the next time he goes back, and he comes back from work each day exhausted and complaining about how drained he is.

Ghusun and I have been encouraging him to make a change. Go back to school for a doctorate in literature, or Arabic studies. He likes the idea, but feels he can’t afford it. His plan to go to Egypt is a compromise—a way to live on little money, and finally have enough time to rest and write and see his mother. When the year is up he will be able to find another job in software.

This is a good decision for him. He needs a break. He has spent so much of his life doing everything for other people, and he feels worn down by it. I am glad he is finally thinking about what he needs and how to take care of himself.

The only problem in all this is me. I would love to go with him to Cairo, but I can’t. It is a brutal reminder that although I am making a steady recovery, Lyme Disease still has me in its grasp. Before I got sick I had lived in Buenos Aires and Mexico City. As a reporter I pretty much went somewhere new and saw something new every day. Life without at certain amount of chaos, pollution, and dancing was not that interesting to me.

Now I am a different person. I spend ninety percent of my time in the same 800 square foot apartment. My constant preoccupation is with how much sleep I get. I can’t breathe when I’m around cigarette smoke, car exhaust, or perfume. (The Poet assures me that in Cairo, like Mexico City, the air is composed primarily of these three elements.) I also stay away from loud noise, sugar, wheat, any trace of food additives, crowds, and a host of other things that might be impossible to avoid in Cairo.

Still, I told The Poet this morning that if I were well enough when he decided to leave I would go with him. He said he would love that, but he didn’t think it was realistic. It all depends on how fast and how complete my recovery is. I don’t know if I will ever go back to being the person I was before I was sick. Right now I certainly can’t imagine myself willingly moving to a polluted place.

We talked some more, about whether I would stay in Seattle while he’s away or move back to DC to be with my family, how he would visit me during the year, and how perhaps I would visit him.

When he left for work I thought about how hard it will be for me without him. He has been my support through every step of my recovery from Lyme, and it has been a long, hard fight that is not over yet. Besides that, I can’t imagine how lonely I will feel when I won’t be able to talk to him everyday, hear his snoring when I’m falling asleep, or read a book with him sitting beside me, reading his own book.

The morning was slipping by. I tried to focus on my to do list, but I felt more tired than usual. I thought, for once, it might be tied to my emotions. I threw myself down on the chair and felt the heaviness of my limbs. I sobbed.

I sang: you are my sunshine, my only sunshine, you make me happy when skies are gray, a song I taught The Poet a few years ago. It couldn’t seem more true to me right now. You’ll never know dear, how much I love you. Please don’t take my sunshine away.

LEFTOVERS

1 lb green beans
2 pieces canadian bacon or thick cut ham
1 wedge crumbly, easily meltable cheese, such as blue cheese
1 cup walnut halves
cooking oil (olive)


Trim the green beans and steam them for 3-4 minutes only-- just until crunchy and still bright green. Take off the burner and set aside.

Toast the walnuts and set aside.

Cut the ham into thin strips and brown on both sides in a skillet with a small amount of cooking oil. Remove ham from skillet and drain on paper bag. Keep the skillet warm.

Put the green beans to the skillet and saute for just a few minutes until they are warm. Break the cheese into small pieces and add to beans. Keep stirring until it is at the point of melting.

Place the ham strips on serving plate, layer the green beans and cheese on top, and cover with toasted walnuts and fresh ground black pepper. Serves 4.


This is what I did with the green beans left over from Thanksgiving. What a treat!
(I modified this recipe from The Silver Palate Basics Cookbook.)

DAVID IS GONE

Yesterday morning The Poet took David back to the airport. It was a short visit, but a good one. We went to see the dinosaurs, worked on our basketball skills, played monkey in the middle, and chess. We ate mac and cheese and spagetti and worked on our table manners in case Barack Obama ever invites David the White House.

Most importantly, David and his dad got lots of wrestling time in. Wrestling includes any weapon you have: butt tickles, imaginary swords, and licking the other person's face. Since The Poet subjects me to this treatment when David is not around, I was glad to watch them from the sidelines for a change.

I never got the point where I felt I couldn't keep up with being a parent. (Cooking Thanksgiving dinner was a different story, but that turned out OK.) Before David came the Poet and I agreed that I could sleep until 9am (if I don't sleep until 9 am I am a wreck), and after that I would help out as much as I could. And it worked out just fine.

The only time I had to tell David I couldn't do something was Thanksgiving day.

"Im bored Tanta Noel, can we go outside and play basketball?" he asked.

At that moment I felt extremely parental. I was wearing an apron, I was cooking the Thanksgiving Turkey, I was keeping one eye on a kid, and my man was asleep on the living room sofa.

"I'm sorry David, I can't," I had to say. "I'm really busy cooking right now. Can you be patient until your Baba wakes up from his nap and then he'll play basketball with you?"

As I heard my words I felt the strangeness of them, as if I had stepped into the skin of a different person. How bizarre it was, to find myself suddenly thrust into this very normal role, which previously had been banned from me, and to find myself playing it rather well.

THANKSGIVING

Yesterday and the day before I had nice, steady energy. Take care of a seven-year-old all day? No problem. Spend most of the day on the phone trying to work out a solution to the easement isssue on the house I'm about to buy? I managed. And I paced myself, so that by the end of the each day I could still cook dinner, or get to the gym for a quick 20 minutes on the treadmill and the all-important sauna.

I wasn't crawling into bed exhausted, as I'd worried I would, but I was sleeping well. I caught myself thinking, "it barely feels at all like I'm sick."

And then today, when I was hosting Thanksgiving for 9 people, I woke up from a rocky night's sleep, and was so exhausted when I pulled the celery and mushrooms out of the fridge that I decided to go back to bed. The stuffing could wait. I had to make several trips to the bathroom-- my body was dumping toxins. I took a bunch of B vitamins and got back into bed, drifting between sleep and that warm, tingly and heavy feeling that lets me know my body is healing, and workin' hard at it. Every time I tried to get up it seemed impossible.

But I had to do it. I had people counting on me to cook the bird.

Thanksgiving is my favorite holiday. I love turkey, I love cranberry and green beans and gravy, and food with tons of butter, and berry cobbler made with maple syrup and lemon zest. Ever since I moved to Seattle I've hosted Thanksgiving. The first year with my parents visiting and doing all the cooking for me, the next I co-hosted at my friend Judy's....this year I had invited 6 friends over, plus me, The Poet and David. Besides the turkey I was planning to do the green beans with lemon zest and pumpkin pie. All of it gluten free, of course, and with whole grains and unrefined sugar.

As soon as I got the turkey in the oven, however, I was on the verge of collapsing. I managed to get lunch for myself and David, while The Poet, who had been asleep on the couch while I cooked, promised he and David would clean the living room before they went out to play basketball. Kudos to him, as he is usually the Thanksgiving scrooge.

As soon as they were outside I sat down in the big comfy chair with my feet up. Once I started to tune into my body, I remembered all my supplements. Back in the chair a few minutes later, fortified by a glass of chlorella and a dose of ginseng, I started to drift towards sleep. Twenty minutes turned into forty, and the boys were back inside and the kitchen timer was beeping.

Getting up to baste the Turkey seemed like climbing Mt Ranier. I looked over at The Poet.

"Do you know how to baste the Turkey?"

"Of course."

"Really?" I was surprised. The Poet gave me a look.

"Sweetie, I don't even know what it is you're asking me, let alone know how to do it. I don't know what that word was you just used."

"Baste-- with a turkey baster..." By now we were both laughing, and by the time I had tried to explain it to him, I decided it was easier just to get up. He'd already opened the oven by way of getting in touch with the concept of basting. When he saw me in action, he got excited.

"It will be really good if I inject the Turkey with white wine and this juice. Do you have a syringe?"

"No," I said, in absolute denial of what we both knew to be true.

"Where's your needles for your injection?" he insisted.

I didn't put up much of a fight. In a minute he had one of the syringes I use for my daily heparin injection, and was pulling off the sterile wrapper. He got busy. Eventually, I had to reign him in, so we could get the Turkey back in the oven.

I collapsed back onto the couch, realizing I was having one of the worst days, for energy, that I'd had in a couple months. I gave up on the green beans, and on putting an extra leaf in the table. We'd eat buffet style and sit in the living room, so I wouldn't have to worry about setting the table either.

And you know what, when my friends came it was all fine. Everyone brought a dish, and Judy made the gravy for me. Her husband, a surgeon, carved the turkey, which didn't taste too bad. I managed to get the pumpkin pie in the oven by the time we had sat down for the first course, and no one missed the green beans-- the salad was more than enough. The Poet by then had transformed from Thanksgiving scrooge to Turkey-basting champ, and washed all the dishes in a feat of extreme heroism.

What I love most about Thanksgiving is being with friends, and, as always, that was the best part.

Now I truly am going to collapse, and tomorrow I'll figure out what to do with this huge mound of uncooked green beans.

Surpise Visitor

It is 11:30 and I've brushed my teeth and taken all my bedtime supplements. The Poet is the bedroom asleep, and in our tiny guestroom is his seven-year-old son, David. David usually lives in Atlanta and we don't get to see him enough, so this is a very happy event. We bought his ticket yesterday, when we realized it could be done for no more than if we'd organized it months ago (one upside to the economic turmoil, I suppose).

Ten days ago I was assuming we'd have a very quiet Thanksgiving with just the two of us. Now we have a full house on Thursday, plus David all week long. I am thrilled. Thanksgiving, especially, is the time of year to have friends and family around.

I will be in charge of David all day tomorrow and Wednesday, while The Poet is at work. We've agreed I can sleep until 9, so I can get the precious morning sleep my body needs in order to function. The rest of the day is going to be a bit of a stretch for me-- no time to keep meditate or think about how my toes feel, and I'm not sure what we'll do for the afternoon nap-- I may make David take one, too.

At one point today I felt nervous about whether I'll hold up tomorrow, but now I've decided to take the next few days as a test of how much better I am. Can I handle this without being wiped out at the end of the day? Maybe. The fact that I'm even saying maybe is a huge improvement from where I was a year ago.

OK, off to bed so I can function tomorrow.

TREATMENT FOR DEPRESSION AND INSOMNIA

Today we’re interrupting the regularly scheduled Lyme-related solipsism on this blog. Instead I’m going to write about a non-pharmaceutical treatment for depression and insomnia that is amazingly effective. It’s called the Neurotransmitter Program made by CHK Nutrition.

This entry is not an infomercial. No one is paying me to write this.

Two years ago The Poet was extremely depressed. He woke up in the morning and cried for an hour, he worried that he would lose his job and wind up homeless. Any discussion about our future immediately reverted back to tragedies he’d been through with other people that he assumed inevitably he and I would repeat.

When things hit bottom for him, he finally listened to my suggestion and went to Carolyn Humphreys to try the Neurotransmitter Program. Within days he was feeling better. Over the next year, under Carolyn’s supervision, he continued on the Neurotransmitter supplements. A year ago he stopped taking them, and his depression has not returned. A few years ago he could have easily spent an hour crying before he left for work. This morning he spent that time talking about Borges and teasing me about my recent mishaps trying to learn swing dance air moves.

But wait—there’s more! Carolyn had mentioned that the Neurotransmitters help with insomnia as well as depression, so I told my friend Maggie about them. For six months she’d had terrible insomnia and had gone to countless doctors and tried everything she could. Still, she was sleeping only four hours a night, could barely function and was worried she might lose her job because of it. She started sleeping well again on the neurotransmitters. She continued the program over the next 18 months, and also followed up with Carolyn with treatments to bolster her overall health.

Maggie saw Carolyn for the last time in March or April, and she has been sleeping well ever since. Occasionally, when she’s under a lot of stress from work, she might sleep only six or seven hours for one night, but her sleep goes right back to normal after that.

How does it work?

Depression and insomnia are both caused by a chemical imbalance in the brain: a lack of neurotransmitters. Neurotransmitters get depleted over time for lots of reasons, prescription medication being one of the biggest causes. (Pharmaceuticals can be great when you need them, but your liver has to work overtime to process them, and that drains you of nutrients.)

So listen up! Antidepressants might be a temporary fix, but they don’t address the root cause of depression, in fact, they might make it worse. (The Poet himself had been on antidepressants before I met him.) Only your brain can make neurotransmitters, but it needs the right ingredients to make them. The CHK Nutrition program gives your body the amino acids and vitamins that your brain needs to start feeling better.

The only way to take these supplements is through a health care professional. If you live in San Diego and think this might benefit you or someone you know, run, don’t walk, to Carolyn Humphreys. If you are elsewhere, my suggestion is to look at CHK Nutrition for their phone number, call them up and ask them for a list of practitioners near you who use this program.

The Neurotransmitter Program takes commitment. You will have to take urine tests (you do them at home and mail them in) so the program can be tailored exactly for your body’s needs, and you most likely will need to take supplements four times a day until your brain chemistry is balanced again—this is months, not days or weeks. It’s worth it.

If you find a good practitioner, he or she will also check to see if there are any underlying health issues that might be contributing to depletion of neurotransmitters. For example, in The Poet’s case it turned out he had a low grade intestinal infection and also super-low Vitamin D levels. Once he took care of those things, his happiness set point climbed even higher.

I am not a doctor, any quasi-medical explanations in this post are based on my unscientific, lay-person’s knowledge of human biochemistry.

FALSE ALARM

Since I have four different doctors, including naturopath, gynecologist, and Dr. B who prescribes my heparin, I spent most of Monday and part of yesterday calling and talking to doctors or their staff to be sure that this irregular menstrual cycle was not a cause for alarm. I have been assured that this often happens for no apparent reason, and was relieved when the naturopath and Dr. B told me the blood thinner heparin is not causing extra menstrual bleeding, nor would any of the supplements I am taking set it off, according to the naturopath.

As of now the second cycle has come to an end, so perhaps that was all there was to it, just a few days of my hormones following their own calendar, for whatever reason. It seems that not everything unusual that happens in my body is a disaster, nor is it caused by Lyme Disease. As of today, I am no longer worried.

SET BACK

At the end of my last post I mentioned things were going well. Besided the election, which has me feeling better about, well, the entire world, things have been on an uptick for me personally. I have just successfully worked my way onto the full dose of my current antibiotics, and have been sleeping relatively well and feeling OK most of the time. Months of looking at real estate are coming to a close as I found a house The Poet and I both dig and to my astonishment I am in the process of buying it far below asking price and with a low interest rate.

Even writing this blog has been a big step forward for me, as I have found a way to write again, albeit sporadically and in a totally self-obsessed way.

It is the way of the world for luck to turn, for things to go well and then to go badly. If there is one thing I have learned with this illness, it's that I can't get through the treatment on automatic pilot. I almost, almost thought that I would have a little time when, medically speaking, things would be uneventful. Over the past several months I got through the sleepless nights, racing heart and jitteriness of working up to the full dose of Bicillin and then Diflucan, and figured out a time table of when to do the injections and what time of day to take the Diflucan so that I can sleep and go dancing and have energy to cook and keep on top of my supplements. In the past two weeks I have even been able to cut my naps down to just one a day, and I've been feeling really quite OK, and my days were starting to fall into a routine.

But yesterday my period started, the only problem being my period just ended a few days before. I have had nothing like this happen in my entire life, not even in the last nine years of being sick. I don't know what to make of it. I am on two blood thinners (because Lyme Disease has made my blood hypercoagulable), both of which I've stopped taking entirely until I can get to a doctor tomorrow.

It's that familiar feeling of not knowing what is happing in my body, only in a new, unfamiliar way.

It seems there is no escaping Murphy's Law, but throughout the day I have been reassurinng myself with father's corollary to it: Things will go wrong-- and it's usually OK when they do.

WHAT A DIFFERENCE FOUR YEARS MAKES

Election night four years ago I spent by myself. I was living in corporate housing in the bland Seattle suburb of Bellevue, there solely for the purpose of getting treatment from Dr. X. Apart from the staff at Dr. X’s office, I knew no one. My mother had been splitting her time between Bellevue and Washington DC. When she was here, she walked over the local democratic campaign headquarters to campaign for Senator Patty Murray and Kerry.

When I felt well enough, I went over with her and made calls in the phone bank room. I remember the ink from the print outs of names and numbers had a chemical smell that made me feel sick, but I kept calling anyway.

A few days before the election, my mom flew back to DC. I went to the campaign headquarters on Election Day and did what I could, but the focus that day was canvassing and putting up yard signs, two things I was too weak to do.

Finally towards the end of the day most of the volunteers headed to Seattle for the final party, but again, this was too much for me. I went back to my apartment. As the election results came in, I called home to talk to my family. But in time, with the race still too close to call, they went to bed. It was well past midnight on the East Coast.

I told myself I should get to bed also, that it I would be exhausted if I stayed up too late. I brushed my teeth and took another quick peak at the TV, then watched a few minutes more, and a few minutes more to see if new results came in. Suddenly it was happening: Kerry was giving his concession speech. I stared as disbelief turned to horror. I shouted, “No! No! No!” at him, but he didn’t hear me.

Misery craves company, and there is no misery like watching John Kerry concede to four more years of W. I wanted desperately to talk to someone, but everyone I knew was on the East Coast and asleep

Every bit as difficult as the physical hardship of chronic illness is the emotional hardship. No matter how hard you compensate for it, if you are too sick to do basic things, such as work, stand up, get around on your own two feet, you will experience stretches of absolute isolation. By the last election there had been many lonely hours I’d already endured, but that night was the loneliest.



FOUR YEARS LATER


“Thanks so much, we already voted,” I called out cheerfully to the three sets of canvassers who came to our door yesterday. I had become one of Armistead Maupin’s “We People.”

The Poet and I had four invitations to election night parties, and decided on the two closest to us. We spent the evening surrounded by friends. I was in a state of nervousness-on-the-edge-of-happiness until eight pm, when we heard a huge shout go up as we walked in the door of the second party. I rushed to find Ghusun and we jumped up and down in each others’ arms.

I cried a little and called back home to my family: they were still awake and jubilant.

For the first time in my life I felt truly proud to be an American. (I can say it, Michelle, even if you can’t). We have a small American flag-- it's left over from The Poet's citizenship party and I keep it in the closet. As soon as we got home I pulled it out and waved it.

At this moment I am happiest of all for my country, for what this means to all of us, and for what this means to the world. But this morning as I woke up and I remembered that night four years ago, I had another moment of being happy, for myself.

In these past four years I have gathered around me gorgeous people. Primarily a man with a generous heart, and after that so many friends I can’t keep up with them all the way I want to. They all have helped me get better. I can walk anywhere I like now and take care of myself on my own. Just walking through the grocery store on my own two feet yesterday is something I do not take for granted.

Right now it feels like everything is going up and up. It will not stay that way, not because I am pessimistic, but because that is the way of things. Recently my father said to me, “You need to be prepared for Murphy’s Law: things will go wrong. And you also need to know that it will be OK when they do.” He was talking about buying an old house, but it applies other places.

He hardly needed to tell me that things go wrong. I know that. And now I know that yes, given a little time, it’s often OK when they do.

JOY

Even The Poet, resident political crumudgeon, was out of the apartment at 7am today, to be sure he got his vote in. Home tonight at 11 after two parties, we are still talking to each other about it, repeating to each other how wonderful it is, and slowly coming to believe that this actually happened.

I am proud of my country. We can be so much more than we've been for the past eight years.

Today is a very, very happy day.

A NEW APPROACH TO LOVE

I love books that make you see the world differently, that change your perspective so much you can’t go back to seeing things the way you did before. Some books that have changed my thoughts and actions are When Things Fall Apart by Pema Chodron, Your Money or Your Life by Joe Dominguez and Vicki Robinson, Spontaneous Healing by Andrew Weil, and of course Michael Pollan’s Omnivore’s Dilemma.

Amy Sutherland’s small book What Shamu Taught Me About Life, Love and Marriage (Random House, 2008) can stand proudly in this category. I tore through it two days, thinking all the while, “I want to try this!”

The premise is simple. While writing her previous book, Kicked, Bitten and Scratched, Sutherland acquired a thorough knowledge of cutting edge animal training techniques, and couldn’t help thinking, ‘would this work on my husband?’

Before you laugh, consider that people are animals, too, and that these are not the old fashioned techniques of choke collars on dogs and whips for subduing lions. In fact, I would love it if everyone I know read this book and decided to use these techniques on me. The approach that Sutherland nicknamed Shamu and describes in her books is far more forward-thinking than many of the ways people interact with each other, especially in intimate relationships such as parent-child, siblings, and romantic partnerships.

To simplify, the Shamu approach is to focus on positive feedback and to avoid negative or punishing feedback as much as possible, even completely. The first part is easy: if your partner does something you like, let him know. Thank him, and do it as close to the time of the action as possible. The second part, avoiding negative feedback, is harder, but it is worth it.

I already had a taste of how effective these ideas can be before I read the book. Several months ago I saw an article promoting What Shamu Taught Me About Life, Love and Marriage. I put the book on hold at the library, and in the intervening months I used the ideas briefly outlined in the article as best I could.


A CURE FOR NAGGING

I tried the Shamu approach with the housekeeping situation. At the time, I felt I did more than my fair share of housework. I nagged The Poet to no end and to no avail. I also tried explaining my feelings of frustration to him, and that got us into fights. Then I tried pointing out the political implications of letting your girlfriend clean up after you, and that lead to more fights.

And then I tried Shamu. I stopped nagging and I started thanking. I thanked him for whatever he did, however small. The fighting about the house keeping went away, and now The Poet pitches in cheerfully, albeit erratically, with housework.

I haven’t transformed him into Mr. Clean, and there are still a few squabbles about dirty dishes from time to time (I usually slip off the Shamu wagon when I’m upset about something else—it’s so easy to transfer your emotions to the kitchen sink), but along the way something happened that was more important than turning The Poet into an anal retentive house cleaner. I learned to focus on what he was doing instead of focusing on what he wasn’t. As I thanked him, I truly became appreciative.

And that is the beauty of the Shamu method—the training trains the trainer.


A CURE FOR FIGHTING?

OK, but what about more difficult situations? The Poet and I fight—I mean really fight: arguments worthy of daytime TV. In fact, I’m not sure they would even put us on daytime TV, we’re so over the top. Neither one of us likes it, and we have tried everything we can to stop, but the fights just keep happening. The Poet has a short temper, and the Lyme disease makes me easily upset—OK, to be more honest, prone to hysteria. There are times when I’m so exhausted that I lose all perspective and at that moment tears and fury are apt to take over at the slightest provocation.

This brings us to the second component of Shamu: avoiding negative feedback.

This goes against the grain. It’s instinctual to shout back, or to even say “stop it!” when your feelings are hurt. It is second nature to try to get through to the other person by showing how unreasonable they are, or how much they upset you, and to try harder when you feel they aren’t listening—even if that means shouting louder, or expressing your feelings more vehemently.

It also gets you nowhere. Interactions feed on each other, whether they are positive or negative.

I know from enough out of control fights that upping the ante only gets more shouting and anger. Even when I use the therapist recommended technique of saying “Hey, let’s calm down now and take a time out,” he often keeps raging, throwing one more insult at me before he stalks off.

Sutherland’s alternative to this pattern is the LRS, or Least Reinforcing Scenario. This is how she defines it:

When a trainer, faced with an animal offering an incorrect response to a cue, does not respond at all for a few beats so as not to encourage that behavior. A neutral way of telling an animal “Wrong.”

In her own marriage, Sutherland tried avoiding any interaction, even eye contact, while her husband fumed about losing his keys. Instead of the long tantrums he had thrown in the past, this time, deprived of the attention he usually got from his wife, he quickly calmed down and set about finding his keys.

That’s all well and good, but the fights The Poet and I have are a little trickier than this. How do I apply Shamu when I’m faced with a raging Egyptian poet, twice my size and mad at me, not mad at losing his keys? I didn’t have a sure answer, but I was so enthralled with the book that I decided I would try anyway.

All the other couples advice books I’ve read (OK, they were only two, but they were by the guru John Gottman) said to make sure your partner feels you are listening to him by maintaining eye contact and giving lots of verbal and visual cues to show you are listening. Turning your back or shutting the other person out is considered stonewalling and will only make him angrier.

Lots of eye contact and verbal feedback is the very opposite of the LRS, so I decided to strike a balance. As long as The Poet was trying to get a point across to me, I would engage with him, even if he raised his voice. As soon as he slipped into merely throwing out insults, or threatening to break up with me (his favorite way to get me upset, and also my favorite way to get upset), I would try the LRS.

For the LRS I wouldn’t turn my back, but just shift my gaze away from him and let my expression go blank. I wouldn’t say a thing.



A FIRST ATTEMPT

I wasn’t hoping for it, but Saturday morning was my first opportunity. This is a time when The Poet and I often get into fights. I have been mostly by myself all week, and I am excited he is home. He, on the other hand, has been working and socializing all week and is ready to be alone. We clash, and he is often at his most volatile because (guess what) he really does need to be alone.

Early that morning he said he was going out and he would be back at 5pm. I was disappointed, but then I realized he must need time to himself, and there was no point trying to persuade him to spend more time with me.

I said, “OK,” but my temporary disappointment must have flitted across my face, and he noticed it.

“You know what, I don’t need this! I don’t need you pouting and making me feel guilty when I want to spend time alone!” he moaned.

I assured him that I wasn’t trying to make him feel guilty. I wanted him to go, besides, I would probably be napping or writing most of the day.

But it was too late. He had started the day in a touchy mood, and once he was upset the argument was unavoidable. Soon enough he shouted, “If it’s going to be this way, I’d rather not have a girlfriend!”

I put the LRS into action, moving my gaze away from him and remembering that I shouldn’t say anything.

And a strange thing happened: instead of feeling like I was choking back my emotions, I felt freed from having to respond. I relaxed. And once I relaxed, I had time to think! I remembered that The Poet had shouted this at me thousands of times before, and had always told me later, long after the fight ended and he was calm again, that he didn’t mean it, he was had just said it because he was angry.

That kept me cool. Different replies did come to mind, the types of things I would usually shout back at him. But since I had taken the pressure off myself to say something, I considered these replies from all angles and realized that they were the kind of things that just made the argument worse. Keeping silent was better.

Eventually The Poet broke the silence. He was still arguing, but his responses were back to addressing the reasons for our conflict, and not just shouting insults. He threatened to break up several more times in the next twenty minutes, but I whipped out the old LRS. It quieted him down, it quieted me down. The argument was a little less heated than usual, and I wasn’t nearly as upset.

And then a strange thing happened. He threatened the break up one more time. I LRSed. There was silence. And then he said, and I quote: “You know I don’t mean that, sweetie. I don’t want to break up with you. I just said it because I’m mad right now, but I really don’t want to break up with you at all.”

Yes, he’s taken it back before, but not in the middle of an argument, not just a moment after making the threat. That was a first.

I called it a success. He went off to have Poet time, and I went for my morning nap.

It was an auspicious start. It wasn’t a miracle, but it cut the element of escalation from the argument, and had an overall effect of slowing and calming down our interactions by perhaps 30%.

Over time, who knows. I will update you on what happens.

DIAGNOSIS, CONTINUED

Continued from the previous post

It is strange that out of the whole complexity of Dr. X’s diagnosis, the part I chose to dismiss was the very crux of my illness. Perhaps at a subconscious level I was protecting myself from the truth, because I certainly wasn’t ready to treat the Lyme with antibiotics. When standing up is difficult, it’s not the best time to bombard your body with killer pharmaceuticals.

As long as I was getting better, I had no reason to think any more about Lyme than necessary. My current treatment was working. I wasn’t all the way there yet, but progress would continue. Full health was just around the corner.

Ten months after I started heparin, full health was still around the corner. I had left Dr. X, and Carolyn Humphreys, my naturopath, sent me to see Dr. Martin Ross.

Dr. Ross gave me the gift I no longer knew I needed: a diagnosis.

If I’m going to continue with the parable of the blind men and the elephants, then Dr. Ross was—to put it plainly—not blind. He knew about elephants, and so could recognize the parts as pieces of the whole. Fatigue, insomnia, low adrenal function, compromised immune system, chemical sensitivity: it was all part of Lyme disease. The illness attacks every system in the body, and my symptoms, it turned out, where not a diverse array of “getting run down.” They were Lyme disease.

“The treatment,” Dr. Ross told me more than once, “takes two to three years.”

I called the Poet as I left my appointment, and ended up meeting him at the organic co-op across the street from his office. We walked through the aisles and then up and down on the sidewalk outside as I told him what Dr. Ross had said.

“Two years?” he asked.

“Or three, probably three since I’ve been sick for so long.”

We were both trying to get our heads around it. For the past year, my recovery was always a few good months away. Now that hope was gone.

Writing this a year and a half later, I can say that Dr. Ross’s diagnosis was the best thing that has happened to me in the past ten years. But at the time it felt like we were being robbed of a dream that had been almost within our reach.

Having the poet beside me was a comfort. We paced the sidewalk, talking about the treatment options Dr. Ross had described. Soon he turned to me: “I have to go back to work, sweetie, but this is a good thing. I think so.”

Gradually over the rest of the afternoon, it sunk in. I had Lyme disease. My complete recovery had never been just around the corner, even if Dr. X had told me that heparin and supplements were all I needed and that the end was in sight.

It explained so many things: the crippling illness, for starters, and why I had made so little progress after the initial change when I went on heparin. What was more, it felt good to know exactly what I was fighting.

Since 1999 my body had been a dark mystery. Even as I’d made progress with Dr. X, the illness had been framed as problems with my body: my adrenals, my immune system, my digestive system, all had strangely ceased to function as they should. And when I say my body, how can I separate that from myself? My existence had been weakness and suffering; it had felt alien and yet was inseparable from who I had become. Being able, for the first time, to picture the malevolent bacteria that had colonized my body changed that. The Lyme was the Lyme and my body was my body. They were occupying the same space, but were, at last, two separate entities.

Dr. Ross had told me that 90 percent of Lyme patients get better with the right treatment. As the Poet had told me outside the co-op: “of course you’re in that 90 percent. I don’t know anyone better at staying organized and taking all your medicine at the right time.”

I looked over the lab write-ups Dr. Ross had given me, and the prescription for an anti-fungal medicine, to start now, before I started Lyme medications. I also needed to make an appointment with Dr. Tara Nelson, who herself had recovered from Lyme, so I could get her advice about what course of treatment I should chose.

Keeping on top of doctors’ appointments and labs and medication for this illness is time consuming. I had long ago learned not to get discouraged by thinking of it all as a just job—a job I didn’t apply for, but was handed to me nonetheless. It was time to start taking care of business.

DIAGNOSIS

For five years I longed for nothing more than I longed for a diagnosis. To be cripplingly sick and not know what is wrong with you is terrible. First of all, there is no means of getting better. Second, there is no simple way to tell others what is wrong with you.

The first, it goes without saying, was bad, but the second could at times feel worse. Without a specific name for my illness people tended to doubt I was sick at all.

It’s one thing to have to stop working, stop writing, ache all over and be so exhausted it was often practical to crawl to the bathroom instead of walking. It was even worse to have my father not understand I was really sick, to have my boyfriend wonder out loud if my problems were psychological, and have one of my oldest friends call me up to tell me my real problem was depression.

If I had to be incurably ill, couldn’t the universe at least give me the dignity of a name that would make people believe it?

Not having a diagnosis did not mean I stood in front of a group of doctors wearing white coats and scratching their heads as they told me “we’re sorry, we just don’t know what’s wrong with you.” Instead I heard explanations as varied as cytomegalovirus, food allergies, weak adrenal glands, chemical poisoning, mycoplasma and the fabulous catch-all, chronic fatigue syndrome.

Looking back, this was like the parable of the blind men touching the elephant. Each explanation was blind contact with a part of the elephant. No one saw the entire beast, which was, of course, Lyme disease.

With each new explanation I believed I had found the answer, and would be better soon. I learned, however, that the proof of a diagnosis is in the treatment that follows. I could believe all I wanted that food allergies were the root of my problems, but when treating them didn’t make the fatigue go away, and when the food allergies themselves came back soon after the treatment, I lost faith in that explanation.

Over five years I went through as string of such disappointments. Meanwhile my health slowly grew worse, I could walk shorter and shorter distances and went through greater downturns as treatments backfired.

In the end, we adjust our psyches to our realities. I grew to mistrust the seductive explanations about what was wrong with me. I would only believe the doctor who actually made me better. When I finally made it to Dr. X, I didn’t care too much about her diagnosis. I cared whether she could cure me.

Dr. X’s diagnosis was more like a list than a single diagnosis. It included most everything I’d heard before, and some I hadn’t. Lyme disease was thrown in there, but it was just one in a jumble of ailments, so I didn’t pay it too much attention.

For two years, I undertook a dizzying amount of treatment: orthodics, reiki, vitamins, supplements, lymph drainage massage, far infra red sauna and cranial sacral therapy. When I got the orthodics, my legs stopped aching when I stood up. When I started taking amino acid powder, I began to sleep better. When took medicine to kill off the colony of round worms in my intestines, my energy climbed another notch. Once I began heparin injections, I could walk again. The distances were still limited, but I no longer had to drive one block to the grocery store.

Meanwhile, I latched onto Lyme disease as the most succinct, recognizable label for my illness. I told everyone I met that I had Lyme disease. It was a relief to have people nod in instant understanding: I was truly sick, not crazy or lazy.

But in my heart I found the other explanations more credible. I had first gotten sick in Mexico, starting with a urinary tract infection that led to an endless array of antibiotics as the infection resisted the medicine. Meanwhile, I had picked up and treated one parasite after another. The low adrenal function explained my exhaustion, as for the food allergies and the sensitivity to chemicals, I could tell for myself I had those things.

I knew, vaguely, that treating Lyme disease involved massive doses of antibiotics. I had a huge fear of antibiotics since the antibiotics I had taken for a urinary tract infection in 1998 had set off all my health problems. I certainly didn’t want to take any more. Besides, that tick bite happened a full year after my health started to deteriorate, so I just saw it as the smallest, least important part of the whole picture.

(If this all sounds confusing, it is. To this day, I don’t fully understand the biological chain of events that got me where I am.)

To be continued...

DYING IN THE MIDDLE OF THE NIGHT

It was Saturday night, our friend Ghusun had come over for dinner. The Poet had made his signature dish—roasted whole trout. I had made a cobbler with blackberries I picked from the vines lining our sidewalk. We had all eaten well, the movie was over, Ghusun had left. It was now 10:30 and the house was quiet, but my head was still buzzing from too much TV, so I went for a walk—up and down the hills of Fremont, towards the bars, where there were lights and people to make me feel safe.

Back home again, I whizzed through my bedtime routine—chlorella powder mixed with water and electrolytes, the handful of pills from the days-of-the-week pill box marked N, then the immune booster I let dissolve under my tongue after pulling the capsule apart and measuring out half a dose. I brushed my teeth, took my vitamin C and salt. By then the Poet was asleep. I wasn’t sleepy, so I read in the living room until I felt tired, then slipped into bed.

(Now the Poet and I have worked it out that we sleep in the same room, in separate beds. He kicks in the night, and I get up to take medication. Neither one would get enough rest if we tried to sleep side by side on the same mattress.)

Within a few minutes I was asleep, and in a few minutes more I was awake again. This is always a sure sign I had forgotten a supplement. I took a Heart Gems capsule (vitamin B), then drank down more Vitamin C & salt. I still couldn’t sleep.

Doh! I hadn’t done my Bicillin injection—the antibiotic injection I do three nights a week before going to sleep. I got out of bed, wishing my body weren’t so sensitive to these things. Couldn’t I just forget, just once, and still get a good night’s sleep? It wasn’t the end of the world. But even when my mind forgets, my body doesn’t. This wasn’t the first time I couldn’t sleep because I had inadvertently skipped a dose of medication.

When I went into the kitchen the clock read 1:30. I got the antibiotic-filled syringe out of the refrigerator and read a Willa Cather essay as I iced the spot for the injection, i.e. the side of my butt.

The hardest part about the injection is first thrust of the needle. I’m supposed to hold the syringe as if it were a dart, and insert the needle with a quick throwing motion. Only it’s hard to do that on myself. I hold the syringe and do the motion, but I inadvertently pull up in the last instant, so the needle just barely breaks my skin—and this of course makes it hurt ten times more than if it went in quickly.


That done, I have to push the 1½ inch needle down into my flesh, then pull the plunger up a few millimeters to check if I’ve hit a vein. If blood flows back into the syringe, then I’ve hit a vein. I have never had this happen. From there, I start to push the plunger down. This I do very slowly, to avoid it hurting. Some nights it hurts anyway, some nights it doesn’t hurt at all.

Tonight it wasn’t hurting if I kept the needle about 1/8 of an inch short of its full insertion. I figured there was some nerve down there that I was brushing against, so I kept back from it.

When I pulled the needle out, a small stream of blood flowed quickly down the side of my hip. I had never seen so much blood after an injection.

I grabbed for a cotton ball, mopped up the red liquid and pressed on the spot of the injection. “Please let this stop,” I begged the powers that be.

I switched the cotton ball for the ice pack, pressing to the spot while I read a little more to distract myself. Willa Cather had met Flaubert’s niece while she was vacationing in France (I wasn’t really sure that I cared). A couple minutes later I pulled the pack away and saw that blood had soaked a thick oval across the Kleenex I used to line the cold pack. Now I was scared.

In retrospect, it wasn’t all that much blood, but when you’re up alone, pushing needles into yourself in the middle of the night, it’s hard to keep things in perspective.

To add to that, several weeks ago I had read the warning label on the package. “Not for intravenous use,” it read, and went on to explain that if it was used inadvertently in an IV, you could die. Was hitting a vein without knowing it an “inadvertent intravenous use?”

Had I hit a vein? I had pulled the plunger up once the needle was in, but now I didn’t remember checking at the base of the syringe for the red spot of blood.

The bleeding wasn’t stopping.


“M., help me!” I called out. The Poet was in the other room, and asleep, so it wasn’t surprising he didn’t hear. With some reluctance, I opened the bedroom door. “M. I’m scared!” I called out to him.

“What is it?” he said, rolling towards me under the jumble of quilts and blankets on his bed.

“I just did my injection and it won’t stop bleeding, and it’s never happened to me before.”

“Come here,” he said. I sat down on his bed. “Just press on it until it stops bleeding.”

“OK,” I said. “I’ll got get another cotton ball.” Once I was back he put his arm around me while I sat next to him, pressing.

“I’m scared I hit a vein,” I said.

“Is it bad when you hit a vein?”

“I think so. It might be really bad.”

“OK, then get to sleep soon and we’ll call Dr. Ross in the morning.”

“But I think I might die in the middle of the night!” I blurted out.

He laughed his big rumbly laugh.

“Then go lie down in your own bed. I don’t want to wake up in the morning with a dead body next to me.”

I laughed too, but against my will. The part of me that was laughing and the part of me that was scared were duking it out.

“If I do die, you’ll be sorry you were so mean to me!” I shot back.

“You won’t die! They wouldn’t give you this injection to do at home if you could kill yourself,” he said dismissively.

OK, he had a point, but I wasn’t giving up so easily.

“If I die, will you tell my parents I loved them?”

“All right. Anything else?”

“Nope, that’s all.”

“I don’t want to die right now!” I howled a minute later. “I don’t want to die now, while I’m still sick and before I’ve done anything with my life!”

“You won’t die.”

“I might.”

“OK, I’ll bet you fifty dollars you won’t. If you’re right, I’ll give you fifty dollars---”

“Why would I do that? If I wake up tomorrow and I’m alive I’ll have to pay you fifty dollars, and if I’m dead you’ll pay me fifty dollars?”

“Yeah! I’ll bet you!”

I was laughing again. I checked to see if the bleeding had stopped.

“Is it better?” he asked. It was. I went to put on a band aid. I was still a little miffed that he hadn’t taken me seriously. I had been scared, I wanted to be comforted.

“Do you think I could be bleeding internally?” I asked when I got back to the bedroom. Then, “Can I lie down next to you?”

“No, I want you to die in your own bed.”

“OK, you’re right. You need to get a good night’s sleep because if you wake up with a dead body in the other bed you’ll have a lot of stuff to do tomorrow.”

I gave him a kiss and went to the living room. I wasn’t that worried anymore, but I was still wide awake. I lay on the couch and did my relaxation technique.

Twenty minutes later I heard the Poet calling. He doesn’t usually talk in his sleep, so I was surprised to hear his voice. “Noelle!” he called again.

I peered into the bedroom. He was half asleep, looking up at me. “How are you feeling?” he asked.

“I’m OK, I don’t think I’m going to die. I’ll go to bed soon.”

He had taken me a little seriously after all. I went back to the living room, no longer feeling embarrassed or neglected. In a few minutes, I was sleepy.



“I’m so sorry for waking you up last night,” I said the next morning.

“It’s OK, sweetie, you were scared. It was understandable.”

“But you didn’t sleep enough and now you’re tired.”

“That’s OK, we’ll have a relaxed Sunday,” he said.

And we did.

MR BUSTER, PART 3

This story starts with the post on 10/16/2008

A few weeks later, my parents were out of town. Mr. Buster had no TV (a further sign that deep down, he was an intellectual), so I invited him to our house to watch a movie. About a half an hour into it, he put his arm around my shoulders, and I moved closer to him. Soon enough we were kissing. I never saw the end of the movie.

The next few days were wonderful. Physical contact had been established, and I was elated. Of course it was great to be having sex again (perhaps the one thing the illness hadn’t interfered with was, quite strangely, my sex drive), but more than that, I was thrilled that a guy was interested in me. After Alejandro and I had broken up, I had assumed that my love life was over for the duration of my illness.

What guy would want to date someone who could barely stand up, who lived with her parents, and didn’t have a job? To realize that men, or at least one man, still found me attractive, despite all that—well, it made me feel completely different about myself.

Of course, the intellectual connection I was hoping for had yet to materialize, but that didn’t matter. I still clung to my assumption that still waters ran deep, and his true inner complexity would show itself in time.

And if part of me was starting to suspect that this complexity might just not be there, I wasn’t too concerned. When he mentioned that in a few months, USAID would be sending him to Nepal and he would be there for several years, my reaction, to myself at least, was “Perfect!” He didn’t have to be my soul mate, he could just be fun for a few months.

Besides, dating someone for a short time seemed more realistic, given my circumstances, than embarking on something that had more potential, with all the accompanying hopes and fears.

“This is all that I can ask for,” I thought, “I can have fun for now and maybe even distract myself from being sick for a few months.”

The problem was, Mr. Buster felt differently, as I quickly discovered.

That first night, after the movie, we stayed up talking. He asked me about my illness, and I explained to him what I knew. I had chronic fatigue syndrome, although the illness wasn’t very well understood. There was some problem with my immune system, and also my adrenal glands, which regulate the body’s energy. I seemed also to have food allergies, or at least if I avoided certain foods I felt less tired. He listened sympathetically.

The second night, when I went to his house, he asked me about my illness. What doctors was I going to, and why hadn’t I gone to John’s Hopkins and the Mayo Clinic?

I explained to him that I had been to John’s Hopkins already, and the person I saw seemed as confused as I was. I told him about all the other doctors I had seen, all twenty of them, all without a solution. With each new doctor my hopes had soared and then crashed. Some had tried things that made me worse, and I had ended up in bed for weeks, aching all over and crying from how exhausted I was.

Now, I explained, I was going to an acupuncturist, and I was making progress, even though it was slow. I was taking a drawing class and doing a little volunteering, which was much more than I had done before, so I was happy stick with acupuncture. Mr. Buster listened to all this, quite sympathetically, and he seemed to understand.

The next time I saw Mr. Buster, he asked me why I didn’t go the Mayo Clinic, or at least back to John’s Hopkins, and also why I didn’t go see a psychiatrist?

When I asked him why on earth he thought I should go to a psychiatrist, he told me his mother, who had been a doctor in Sri Lanka and was now a physician’s assistant in this country, had told him that chronic fatigue syndrome was a psychosomatic illness. In other words, it was all in my head.

I explained to Mr. Buster that I didn’t need to go to a psychiatrist. I wasn’t making this up. If it was all in my head, then wouldn’t the cure be all in my head? If I believed a doctor could cure me (as I had with each new doctor) then wouldn’t going to a doctor and taking medicine cure me? Besides, I had seen a therapist for a couple years, and she had always been clear that my illness was not psychological. Therapy had helped me learn how to cope with being ill, but had done nothing to cure my illness.

Mr. Buster listened to all this, quite sympathetically. He seemed to understand.

The next time I saw him, he had some information—a few pages from a medical reference book, which his brother, a doctor, had given him. (It turned out his family was crawling with doctors.) The entry was on chronic fatigue syndrome, and while it asserted that the illness was indeed a medical condition, not a psychiatric one, it shed not a photon of light on my dark problems. It merely listed the symptoms of cfs, and stated that ten percent of sufferers recovered. Ten percent? I didn’t need to read that. I really didn’t.

“Oh, don’t worry, of course you’re in that ten percent,” Mr. Buster said.

And what did the article recommend to achieve recovery? Resting, stretching, gradual increase of gentle exercise. Well, that was good. I already did the first two, as for the last, it got me nowhere except miserable, aching, and in bed. I had learned, instead, how to move around as little as possible: to brush my teeth and take a shower sitting down, to sit on a stool when I did anything at the kitchen counter, and to park myself on the sofa, sewing in hand, or at the kitchen table with a sketch book, and see how long I could go without getting up.

It was not in my nature to do this—I had been a rugby player, a scrappy news reporter and a traveler. Now, however, my energetic spirit got me into trouble. Too much movement, however small, exhausted me within minutes, and the next few hours, or even the rest of the day, would be ruined.

Mr. Buster listened to all this, and seemed to understand, but of course he understood nothing. Or at least, none of it was sinking in. He came to his own conclusions, based primarily on his mother’s mentioning that my illness was psychological and his brother’s scrap of paper that stated exercise would lead to a cure. I could talk myself blue, or purple even, but he would not see things from my point of view.

This is not to say that Mr. Buster didn’t care about me. On the contrary, he was giving every sign of falling for me. If he had cared less, things probably would have been easier. Because he cared, he wanted me better, and he wasn’t going to accept that wishy-washy acupuncture would do it.

All these conversations had taken place while other things were going on. We cooked dinner together, and talked about politics, and the impending war. I started to spend some nights at his house. We walked the dogs and he helped me train Kramer to come when she was called, which until then she had always considered optional.

Throughout it all, he kept returning to the one topic that was becoming an obsession for him: my health. I thought I would have a few months’ distraction from being sick, but it was turning out to be the opposite.

The strange thing is that even as I write this now, I realize Mr. Buster was right on some points. Acupuncture wasn’t curing me, and I was deluding myself that it was. I had gotten better at marshalling out my energy, and this allowed me to take up drawing, in a limited fashion, and to do some volunteer writing for the Chesapeake Bay Foundation, again in an extremely limited capacity. I had also learned how not to feel my absolute worst, not by doing anything that was in any shape or form a cure, but by avoiding the activity that brought on those symptoms. All this I lumped together and took as signs of progress. The truth was they weren’t.

Mr. Buster, with his fresh, outsider’s perspective, saw what I could not: that I wasn’t doing enough to get better. In his own, misguided way, he was pushing me to do more.

And of course, he was also extremely wrong. If he had truly listened to all my explanations, he would have understood that I was seriously ill, with something that couldn’t be wished away with a positive attitude, anti-depressants or more exercise, not any more than it could be overcome by acupuncture and two hours of meditation a day. We were both deluding ourselves, only our delusions were at odds with each other.

“You seem to have energy for what you want to have energy for,” he said to me once, when we lying in bed after particularly nice sex.

“What?” I said. I couldn’t believe what I was hearing.

“You had a lot of energy just then,” he said. “It seems like you have energy for what you want to do.”

I didn’t know whether to cry or to scream. “Energy for what I want to do??
Lying on my back and wriggling around a bit doesn’t take much energy,” I shot back. “What I want to do is walk down the street! What I want to do is get a job, move out of my parents’ house, go running!!!” There were tears in my eyes and I’m sure he could hear the fury in my voice. I didn’t wait for an answer. I got up, dressed, and left, driving the four blocks back home.

He called me soon after to apologize. It was heartfelt and convincing, but our days together were coming quickly to an end. He never gave up trying to encourage me to be more active, and stuck with the idea that a psychiatrist would cure me. “You’re probably just depressed,” he would say.

My allergy to the forced air heating in his house kicked in. He changed the filter, but it made little difference, I couldn’t spend the night there, and my parents’ house, of course, was out.

At one point he had seen me reading my beloved P.G. Wodehouse and he became very excited. His grandfather had loved Wodehouse, and had read some of his books to him as a little boy. I suggested I read to him sometime, and he liked the idea.

The next time we were lying in bed together, I pulled out Laughing Gas and started reading it to him. After about half a page he interrupted.

“I’m bored,” he said.

At that point, I truly gave up on Mr. Buster’s hidden intellect. It just wasn’t there. When it came down to it, we had very little in common: we were both dog owners, and we were former rugby players. My rugby captain Amanda had once said that women rugby players and men rugby players should have as little to do with each other as possible. I was beginning to think she had a point.

I left my Wodehouse book at Mr. Buster’s. When it was coming due at the library I called him to ask if he could bring it with him next time he and Buster went to the park.

“Do you want me to bring your other things as well?” he asked.

Just a few days before he had been asking me if I would go with him to Nepal, or at least visit him while he was there. So I don’t think breaking up was what he wanted. Offering to bring my things was more of a defensive move—the old pre-emptive strike. But a pre-emptive strike can bring about just what you are trying to avoid.

I hadn’t planned on ending it just then. I really only wanted to return my library books. I'd figured I would wait until things had deteriorated completely before I ended it, but what was the point? In my heart I was looking forward to being on my own again, so that I wouldn’t have to feel so bad about being sick.

“Yes,” I said, “You might as well.”

MR. BUSTER, CONTINUED

This story starts with the post on 10/16/2008.

After that first meeting in the park, I entered into the second phase of my relationship with Mr. Buster: the chase. My plan was to be in the park at the same time as Mr. Buster as often as I could. At first I tried going back to the same bench at the same time of day as when we first met, but with no results. Given that the time of day was 4pm, and Mr. Buster had a job, this wasn’t surprising.

The time I knew he was in the park, 6am, was out of the question, so I next tried the after-dinner hour, soon followed by the 5 o’clock time slot. This last was a rough time of day, when snarling alpha dogs competed in a sort of slam-dance, giving the park an atmosphere something between a mosh pit and a barroom brawl.

Kramer, who was a timid dog, was relieved when we stopped frequenting that scene. Since the Busters seemed to have no regular hour besides the early morning, I took to looking longingly at the park each time I was near a window, scanning the green for Buster’s black shape, or the tall, narrow one of his owner. I was prepared to grab the leash and run out the park with Kramer at any instant.

I knew it was a cliché, and I reveled in it. So much more fun to be the boy-crazy girl, waiting in the school hallway with a stack of books at the ready, than to be the chronically ill cousin, moping in a dark corner, coughing beneath a shawl and counting on her mother to arrange her marriage to Mr. Darcy, even though everyone knows he will never marry her!!

And then, by a stroke of luck, my mother tore her calf at the same time my father was out of town. I bravely volunteered to walk Kramer at the 6am time slot. This was tantamount to a Kamakaze mission. Although I was often awake at 6, my energy was close to zero at that time of day. I usually meditated for an hour right after breakfast, just to feel OK. Not to mention that I had to brush my teeth and take my shower sitting down.

Looking back now, it seems a testament to just how boring my life was that I saw the need for me to walk Kramer as such a golden opportunity. Once I had seen Mr. Buster again, and spoken with him, it didn’t matter to me that I spent the rest of the day lying on my back on the living room floor, a yoga mat beneath me and my legs propped up on the sofa, hoping this inversion and hours of deep breathing would work a miracle against the aching and fatigue that had taken over my body.

It also didn’t seem to matter that he wasn’t particularly witty, or insightful in his conversation. My goal was to talk to him, and I was reaching it. Besides, he was just a little shy and I was sure his conversation would blossom once he warmed up at little.

One thing was sure: he seemed eager to talk to me, and always crossed over to my side of the group of dog walkers, whether Kramer and Buster were playing together or not.

Within a few days I had a sort of back-handed invitation to see a movie with him, and a request for my email. I was thrilled. I told all my friends, who had been receiving regular updates on the Buster saga.

“Watch, he’ll probably pick me up in an S.U.V.” I laughed.

He did.

“Well, this is the first and last date,” I thought to myself while climbing into the monstrosity. Having lost all interest in staying in his good graces, I decided I might as well leverage some social pressure against him.

“What’s with this car? Don’t you care about global warming at all?” I chided him, trying to keep the tone playful. (My philosophy was that belligerence never won anyone over.)

He explained it was his brother’s car, on loan to him while his was in the shop. He normally drove a Subaru. We were back on.

Fortunately, there was no awkwardness about my being sick, since we ate at a restaurant right across the street from the movie theater. The only physical difficulty for me was standing in the lobby of the theater waiting to be let in to the movie, but this only lasted a few minutes, and since I spent the next hour and half sitting down, I had enough time to recover.

Still, it was not the most thrilling evening of my life. I didn’t really enjoy the movie, Eight Women, although the fact that Mr. Buster had picked an artistic French film was a further indication that beneath his reticent surface lay a sparkling intellect. Nevertheless, Mr. Buster’s conversational skills did not blossom has I had hoped for. He was shy, I was sure. I just had to draw him out and make him comfortable. I kept at it, and by the end of the night he was a little more talkative.

“This was fun,” he said. “Let’s do it again sometime.”

“OK,” I agreed, not really knowing why I was doing so. Was he as intriguing as he seemed? In the end, the outing had felt like hard work.

I told all my friends that when he called I would probably deflect him. We could remain casual, in-the-park-only friends. That was, whenever he called…. I was expecting him to call, any day, any time now….since he had said “let’s do this again,” and “this was fun,” I was sure he would call…. but he was taking his time about it, for sure, and then it seemed to be turning out that he wasn’t going to call….

And this annoyed me. Why wasn’t he calling? Wasn’t he interested in me? My mother’s calf had healed, so I had stopped taking Kramer to the park at 6am (with great relief, I might add, not to be abusing my already sick body). Had he just been counting on seeing me in the park and taken my absence as a sign of disinterest?

After about ten days I ran out of patience and sent him an email, saying we should get together with our dogs in the park sometime. He agreed.

Mr. Buster was turning out to be the sort of modern man who hedged his bets and took a casual, just-hanging-out-with-a-friend tactic to dating. It was an approach that historically I had little patience for: I had lived in Argentina and Mexico, where guys were either interested in you or they were not, and when they were they pursued you fervently. This always made things simpler.

But I was back in the States now, and things were different. Annoying, yes, but I didn’t give up so easily. The next few months things proceeded at a desultory pace. We went to a few movies, and met in the park with our dogs. I almost always made point of standing on these occasions, although it killed my legs and I would have preferred a bench. I was too embarrassed admit that I needed to sit.

Sometimes talking to him was like pulling teeth. At others, our conversation, although not scintillating, flowed easily. The dogs were a big topic of conversation, as was the looming war in Iraq, his work, and politics in general. Of course he knew I was ill, I had told him early on, in response to the inevitable question, “so, what do you do?” But I didn’t dwell on it, and he didn’t pry. Mostly, he didn’t seem to mind that I was sick, and this was a relief.

Fall became winter, and I invited him to my birthday party. As a present he brought me a headscarf from his recent trip to Pakistan. Over the past few months I had regaled all my friends with stories about running after him in the park, and although he wasn’t exactly my date for the night, I was excited for them to see how handsome he was. At one point in the evening, he put an affectionate arm around my shoulder.

To be continued….

MR. BUSTER

While I was living with my parents, my mom spent a considerable amount of time in the park across the street from our house, walking our young dog, Kramer. At certain times of the day the number of dogs in the park would go from a smattering to a handful and then to a scene, with the owners congregating at one end of the park or another while the dogs ran in circles around them.

Kramer’s scene was the early morning one, and there my mother got to know many of the dog owners, but rarely by their names. Instead, she knew the names of the dogs, and when she talked about the owners she would call them “Mr. Spot,” or “Ms. Pigwidgeon,” and so on.


Nearly every morning my mother would recount for me what had happened in the park, and since it usually involved Kramer doing some utterly endearing doglike thing, I listened happily. But I seldom cared much about the human gossip that went along with the dog stories.

One day when we’d had Kramer for about a year, my mother came home from the park and told me, with a thrill in her voice, that there was a new dog owner—Mr. Buster. He was young and good looking, and single.

“Mom, I’m not interested,” I told her.

“But he’s so neat!” she said. “He’s from Sri-Lanka and he works at USAID….”

I still wasn’t interested. It was only a few months after my break up with Alejandro, and mentioning another man felt like rubbing salt into my raw wounds.

But even more than that, it seemed beyond consideration that anyone would want to date me while I was as sick as I was. I had stopped working several years before, and at twenty-nine I was living with my parents and dependent on them for more than just financial support. I needed them to cook and grocery shop for me, and even drive me places. My body was a dead weight almost every moment of the day, and the few glimmers when I felt—well, not close to energetic, but at least a little less sick—were so fleeting that I had learned not plan or hope for them anymore.

I didn’t even have the dignity of being able to tell people what was wrong with me, since my diagnosis had remained unclear. How was I supposed to meet someone under those circumstances?

No matter. If I wasn’t interested in Mr. Buster, my mother certainly was interested in him on my behalf. Every several days she came back from the park with some new bit of information about him: he had just bought a new house a few blocks from the far side of the park; he had got Buster from the pound; Buster was on a diet; Mr. Buster had four brothers, whom the Tamil Tigers had tried to recruit while they were living in Sri Lanka.

This last bit my mother learned from Mrs. Buster, Mr. Buster’s talkative mother who often walked the mile and a half from Ledroit Park to our neighborhood to take Buster out during the day. Mrs. Buster was slender and handsome and used an umbrella to keep cool in the summer heat. She took classes at the Smithsonian Institute and had been a doctor in Sri Lanka.

My mom was even more enthusiastic about Mrs. Buster than she was about her son, and as I write this now it I suppose she imagined what good friends the two of them would become once they were no longer mere Lincoln Park acquaintances, once their children were a couple.

At the time I was too engrossed in my own busted-heart to consider this. I didn’t want another man, and another man certainly didn’t want me.

Or so I thought, until one day in October, when I took Kramer to the park in the afternoon. My routine was to make it to the bench closest to our front door, then sit down, take Kramer off the leash and let her run around.

I had just done this when a large German Shepard mix ran up, followed by a tall, strikingly handsome man who knew Kramer by her name and called his own dog Buster.

He told me he had gotten Buster from the pound, that he worked at USAID and had just bought a house a few blocks away, and that Buster was on a diet. I pretended I was hearing all these things for the first time, but my interest was not feigned.

To start, his accent was intriguing. It was close to an Indian accent, without the sing-song lilt, but with almost plummy British overtones . His wire rimmed glasses added an intellectual air to his appearance, and did I mention that he was extremely good looking?

to be continued…

ABOUT LYME DISEASE

LYME DISEASE

Lyme disease is an infectious illness caused by the spirochete Borrelia burgordferi. (A spirochete is a slender bacteria that undulates in a spiral shape.) Symptoms of the disease range from fatigue and insomnia to joint pain, impaired mental function and even Bell’s palsey-like paralysis.

COMMON MISDIAGNOSIS

The Center for Disease Control reports that 7.9 per 100,000 people suffer from Lyme disease in the United States, although the actual number is probably much higher, since the illness is commonly misdiagnosed. My story, with four years of misdiagnosis and two and a half more years before I found proper treatment, is not unusual.

Many people also believe that Lyme disease is only found in New England, or at least only on the East Coast. This is not true. Lyme disease has been reported in 49 of the 50 states.

TICK BITES

Lyme disease is carried by deer, mice, or other small mammals, and spread to humans via ticks bites. It is possible that there are other, unknown means of transmission, since only fifty percent of Lyme sufferers remember receiving a tick bite.

A large, circular rash in a bull’s-eye pattern around the tick bite is a sign of Lyme disease, however absense of such a rash does not mean there is no Lyme infection. (I did not get a rash from my tick bite.)

TREATMENT

Lyme disease is treated with antibiotics. When caught early, a thirty day course of antibiotics usually brings about a successful cure. President George W. Bush was treated for Lyme disease this way, as was a friend of my family’s who was bitten by a tick in the same area where I was.
When the illness is misdiagnosed and becomes chronic, thirty days of antibiotics is usually not enough. Even if the patient recovers from short treatment, relapse is likely. A small but growing number of doctors have come to believe that longer courses of high-dose antibiotics are necessary. The treatment can last up to three years in some cases. These doctors report a 90 percent recovery rate in patients with chronic Lyme.

CONTROVERSY

There is an acrimonious controversy in the medical world over long-term antibiotics for Lyme disease. The group of doctors advocating and researching this treatment approach has its own association, ILADS (International Lyme and Associated Diseases Society) . The opposing camp, IDSA (Infectious Disease Society of America), dismisses the idea of chronic Lyme and does not recommend long-term antibiotics to treat Lyme. The dispute between these two groups and their allies is long and bitter, with most of the medical establishment and the insurance industry siding with IDSA, and patients with chronic Lyme siding with ILADS.

I am one such patient, and I would like to attest that after one year, having only partially completed my course of treatment, I am able to do much, much more than I could before I began the antibiotics. These are results that I simply could not obtain before going on antibiotics, despite a myriad of other treatments.

A fellow blogger, Joe, has written a first-hand account the failure of short-term antibiotics and the difficulty of encountering doctors who were skeptical or ignorant about a more effective treatment. You can read about what he went through here.

The controversy is truly unfortunate, not only becuause it prevents doctors from considering all treatment options, but also because it impedes medical investigation and discourages young researchers from going into the field.

FURTHER READING

An excellent book on the history of Lyme disease and the controversy surrounding it is Bull’s Eye by Jonathan A. Edlow.

SLEEP AT LAST

Sleep that knits up the ravelled sleave of care,/The death of each day's life...Chief nourisher in life's feast --William Shakespeare, Macbeth II,ii.

I spent the past few days not sleeping. This is a time consuming activity. When I don’t sleep I lie in bed, trying to sleep, listening to books on tape or letting my thoughts drift aimlessly, running through my relaxations techniques, and getting up every twenty minutes or so to take something—a little more Vitamin C, a homeopathic, some herbal drops—to see if it will allow me to drift off.

In my defense, when I’m not not sleeping, this method usually works. But when I’m not sleeping, this method takes up more and more time, Instead of getting up for the day at 8, I get up 9 or 9:30, feeling unrested. I eat breakfast and am so tired I decide it would be a good idea to have my morning nap early, so I get back in bed. Instead of sleeping for the usual 20-30 minutes and getting up again, I can easily spend an hour or more not sleeping and what with the not sleeping before breakfast, the entire morning is practically over by the time I’m done. The same goes for the afternoon nap…. and soon enough I’m in a state of extreme exhaustion and frustration.

So the day went yesterday. Aside from not sleeping, I managed to walk a couple blocks to the mailbox and make one short phone call by the time 5pm rolled around. In my defense I also meditated, but this is close enough to not sleeping it hardly counts as an activity. 5-6 I spent talking to the real estate agent and seeing that all my friends had emailed me to say they were too tired to go out tonight.

Everything around me was irritatingly familiar-- I had been at home spinning my wheels far to long. To make it worse, I’d told The Poet I would be out for the evening so he would have time to himself, and I was going to be damned if he found me at home moping instead.

“Fine, I’ll go for a walk alone just to get out,” I told myself. I didn’t want to walk on my regular routes through my neighborhood—I would get in the car and drive to Queene Anne and walk up the huge hill, something I hadn’t done before.

Tears welled up as I locked the apartment door and headed for my Honda.
“This is ridiculous,” I told myself. “Just because you’re along right now doesn’t mean you don’t have friends or people that love you.”

In a last wild hope I called Amelia. She hadn’t emailed me back, but might be home with her family for the night, and I could visit.

She picked up the phone. I could hear her five-year-old and her toddler, both screaming in the background.

“I’m having an extreme child-rearing moment,” she said. “Are you calling me because you want to go out tonight? Let’s go!”

She left her husband in charge of the kids, and half an hour later we were at the movie theater. We saw Ghost Town, which was good for a few laughs, and then went out for tea and kvetching and more laughs. When Amelia looked down at her watch and declared it was 10:45 I was surprised. Time had flown.

I also felt one hundred times better and had even forgotten about my insomnia for a little while. It’s amazing how such a simple thing can make such a big change.

I got home, took all my pills and gave myself what felt like a thousand injections, but was really only two.

I woke up at about 6 the next morning, when I usually do, and went to the kitchen to mix up the drink I always have at that time, with magnesium and amino acid powder, plus a handful of vitamins and supplements. I went back to bed. “If I can’t get back to sleep,” I told myself, “It doesn’t matter. I’ll get up and do stuff.”

I dreamt I went out swing dancing. I sat on a bench and watched, thinking I would jump in sooner or later. Seamus Heaney was there. He turned out to be a decent swing dancer and was dancing all the songs. I didn’t want him to see me, so I hung back. The music ended and it was time for me to take my chlorella. I went to a sink for water. As I mixed up the drink, Professor Heaney came up to me. He recognized me and chastised me gently for not writing. I knew it wasn’t my fault, but still I was chagrined.

“Look, I wrote your recommendation letter and it’s the best I’ve ever written,” he told me. As he talked, his Irish brogue became thicker, until his words were a deep, unintelligible rumble that rose and fell like waves. The next moment I was awake with a different poet, my boyfriend, snoring loudly beside me. I looked at the clock. It was 9:15. I didn’t care about Seamus Heaney anymore. I had, at last, slept all that I needed.

****************************


Post Script: Although it seemed at the time that going out with Amelia had cured my insomnia, the next day I realized that leaving home in a hurry and staying out fairly late, I put my heparin injection off until right before going to bed. That was what helped me to sleep so well. Since then, I have continued to do my heparin shot late at night and I have had not a drop of insomnia. Thanks to Amelia!