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.)