Feeling So Much Better!

Only nine days ago, I was on death's door--exhausted after the least exertion, water on my lungs, feeling like I was 90 years old. Then something clicked, I know not what. I cried, and then I cried some more. And then for good measure, I did some more crying. Maybe that's what did it.

I also said to anyone who might be listening--maybe an angel, maybe a spirit guide, maybe God--"I am sooooo tired of this! All of this! Do you hear me? I am so fucking tired! If you want me to do your work, I have to be able to do the work."

I informed Dr. Lin, my young, good-looking, ever-concerned internist, "I'm not saying I'm at the point of suicide yet, but I really don't know how much more of this I can take. I want to be able to do things--travel, walk, make my bed. Do you understand?"

Well, somebody must have understood, and he or she listened and did something because I am feeling several orders of magnitude better.

Over the course of my life, I have had hundreds of false turning points. My blood sugar would go down and my insulin requirement would drop, and I'd think, "Oh, thank you, thank you, thank you! My body is healing. Soon I'll be free of injections! Soon I'll be healthy and free!" Only to have the downward trend reverse until I was back to where I'd started.

But this is the longest sustained turnaround I've ever experienced. This time it's not my insulin requirement and blood sugar that have dropped. It's that I have energy once again. After more than three years of being unable to surf because of fatigue, anemia and shortness of breath, I feel I could take to the water again. I also feel like planning a trip--a trip in which I'd climb the stairs of cathedrals, stroll the whole day long through an enchanted city, and swim to sea grottos, while cavorting with the dolphins. I feel vibrant and alive again.

Thank God!

Classical Binge and a New Friend

In the past two weeks, I've attended two classical concerts: the first at the gorgeous Art Deco Alex Theatre in Glendale, which featured pianist super star Andre Watts, and the second at Segerstrom Hall across from South Coast Plaza. As an extra treat, I went with ladies who "know people" and so were able to secure free tickets. Alexi, via her opera singer grandmother, is friends with Andre Watts, and Diana's brother is a bass player for the Pacific Symphony.

I often listen to classical music on the radio and I have a few choice CDs. I was a member of the Southern California Early Music Society for many years and so attended medieval-music concerts in candlelit cathedrals in Los Angeles and Pasadena. But besides these two recent adventures, I have not been to a symphony performance since I was in high school.

Classical music is one of the pinnacles of Western civilization. Two Saturdays ago, I met with Andre Watts during intermission. He was a gracious man, remembering my name and introducing me to other admirers as they poured into his dressing room. After last Saturday's performance at Segerstrom Hall, Diana and I went backstage to meet with several of the musicians, all old friends and/or lovers of Diana's. To be around such accomplished professionals makes me feel as if I am at the very nexus of human aspiration over the past four or five centuries.

As Diana is a cellist, her brother plays for the Pacific Symphony and her sister plays for the LA Opera Company, I will probably be going to many more classical venues.

And Diana, in her own way, is thrilled to know a writer. She said, "I'm always around musicians. It's nice to know someone who expresses creativity through another medium."

It's interesting how life unfolds. I met Diana in January on the Blue Line. I had attended a peace demonstration in Los Angeles, and she was returning from an architectural tour. I'm not sure if I asked her about the tour first, or if she, seeing my sign, asked me about the march. Either way, we struck up a conversation and exchanged phone numbers and email addresses. Diana invited me to attend a number of events with her--the "lefties" potluck at El Dorado Park, a Shakespearean play, a lecture by an environmentalist--but I was always busy. Two weeks ago, I contacted her about a Russian choral group that is performing tonight in Costa Mesa. She said $35 was too much for her to spend, but would I like to see the Pacific Symphony for free? So last Saturday was the first time we've seen each other since that January train ride.

Tonight I'm attending the performance by the Russian choral group with another friend, Beverly, who had the $35 for a ticket.

It's so important to surround yourself with people of a creative spirit, whatever form that creativity takes. It gives me a zing down in my soul. It's as if through their music or their words or through dance or cooking or simply living a life of adventure and courage, they are touching the divine and sharing their take on the divine with the world.

Loving Emails, Solo Hugs, Lots of Crying--Strategies for Overcoming Hopelessness

After several good cries and a few messages of love from far-flung friends, I am feeling better.

And a big thank you to Tom; his new boyfriend, Ed; and Tom's parents, Tom and Gloria. Ed, who lives in a huge house that is filled with inventory from a shop he once owned, always says that if I need anything, let him know, he probably has some to spare. I told him I could use a few pots and a blender. Instead of taking from what he already has, Ed joined forces with Tom, Tom, and Gloria to purchase a nine-piece pot set and a blender. What's more, my friend Tom told me, his parents love me and have "adopted" me. This kindness and generosity out of left field overwhelmed me. I wept with gratitude when Tom carried the two big boxes containing my gifts into my apartment. As I continued to weep for joy, Tom washed the dishes that were already in the sink and the new pots set and blender too.

During these last few days of internal and externalized drama, I even showed up, unannounced and without an appointment, at the door of a social worker who counsels transplant patients and began weeping. Although she eventually steered the conversation around to anti-depressants, in the main, Karen was wonderful. I really could tell she was listening, and her eyes were filled with compassion. I said no to the drugs, that this was a temporary thing, a big hump I was going over and that I wanted to understand the pain, not medicate it away. She asked what she could do for me, and I told her I needed a hug, that no one ever hugs me and that I need physical contact. So Karen with her ample breasts wrapped her arms around me and held me for a minute or so.

I am not discounting the importance of email contact, especially with those who are not living nearby. But nothing beats old-fashioned human contact--a hug, a back rub, a hand-holding, a kiss.

So often during my decades of being alone, I have embraced myself and said aloud with a big smile, rubbing my chin against my shoulder, "Oh, Heidi, I love you. I love you so much." Or at night, lying on my back in bed, I hug my pillow and say sweet things to it, as if it were my lover or as if the words were those my lover was speaking to me. Of course, if I am really down, this just makes things worse, as I fully realize no one is there but me. But if I have not yet sunk that low, I somehow feel love filling me, as if a friend or lover really is with me, hugging me, infusing me with lovely talk. Or perhaps a passing angel stops for a moment and zings me with love.

I realize that people besides my son care about me. I know that if I died today, at least a dozen people would show up for my funeral. But those who live nearby are busy with other things in their lives, and the others live too far away to drop by for a hug. So, I just need to give myself more hugs. Just like a massage or a pedicure, it always feels better if someone else does it to you. But no matter, I accept the love that comes through emails--and that which I will supply on a more regular basis in solo hugs.

Broadcasting Illness to the World

I'm really having a hard time with the insulin pump, and this is only the test run—I’m pumping saline solution this weekend, not insulin. On Monday I meet with the diabetic nurse and the endocrinologist to program my pump so that it delivers a very low level of insulin 20 times an hour, 24 hours a day, and a much larger dose before meals. I had to remove the needle yesterday after three days of insertion. I tried to follow the directions I was given for rewinding and priming the cartridge and inserting the needle, but so many steps were missing from the guidebook that I just gave up. I disconnected myself from the pump, went to bed, and have allowed solution to dribble out of the needle and onto my futon for the last 14 hours. I’ve had more important things to do than diddle with this device. More important things like crying.

Last night I broke down and wept, something I haven’t indulged in for a very long time. And today I’ve cried every time I’ve been alone, which, of course, is the vast majority of my existence.

It’s not just that the pump signals an end to magic and miracles, the possibility that I’ll ever be free of diabetes and its complications. It’s also that I will now be broadcasting to the world that I’m a diabetic. With the pump resting on my belt or on the waistline of my skirt, it will be there for all to see. And, yes, I suppose to someone who’s paying absolutely no attention it looks like a pager, but how many pagers have tubing coming out of them?

Add to this that the only two relationships I’ve had in the 17 years since leaving my husband were with men who said they couldn’t stay with me because I have diabetes. Now on an intellectual level I agree with my dear son that they were assholes and that they were just grabbing at straws, finding any excuse to leave, and they might as well pick one that I don’t seem to be able to change. I mean, if they had said I was too heavy or my hair was the wrong color or I didn’t speak Chinese or I was a lousy surfer, those are all things I could work on. But to pick diabetes is a stroke of genius. They were saying it’s something fundamental about me, like my gender or my race.

And so now every man who may have been interested in me without the pump now will turn away. I won’t even get to tell him I’m a diabetic after a few dates. I’ll have to tell him from the moment he sees me. I’m trading delayed rejection for instantaneous rejection.

Now certainly one could reasonably say, “C’mon, Heidi, if you’ve only had two relationships in 17 years, it’s not exactly like men have been beating down your door to go out with you, even without an insulin pump. In fact, how many times in those 17 years have you even gotten to a second date? So what’s the big deal? No men currently. No men in the future. What’s the difference?”

The difference is that even though no one is interested, I’m still looking good. I’m looking as if I should/could be with a man, I’m looking like a real catch. No one may approach me, but I’m something like a beautiful, distant star. It’s the same thing with Svalbard and Pitcairn Island. I may never travel to either of these far-flung lands, but it’s sure nice knowing these exotic places are out there. So it’s true that no man has spent the night in almost eight years, but at least my body has been ready for some man to spend the night. Now, attached to a pump that stays hooked up to me through a needle and 43 inches of tubing, I feel more like a machine than a woman.

I've only known one person who has been on an insulin pump and he was in a long-term committed relationship. He and his wife weren't concerned about groping. Those with bionic partners realize they have to work around the equipment. But what about me? What about if I’m on a date—miracle of miracles in and of itself—and I feel something for the man and he feels something for me? We begin kissing and he starts feeling me up and his hand jerks the needle out of my belly or he gets tangled in the tubing. Of course, he’d run, maybe even letting me fend for a ride home.

I know some people will say the Pollyannaish thing: “If a man loves you, he won’t care that you’re a diabetic-heart patient-person with kidney disease.” We all know that’s “Hallmark” bullshit. Women are famous for taking on charity cases—disabled vets, alcoholics, convicted felons—but men demand perfection.

And someone whose pancreas isn’t functioning, whose heart is running on approximately 5 percent of capacity, and whose kidneys are biting the dust is hardly anyone’s idea of perfection.

The Healing Celebration

Once in a while, I indulge myself in the healing-celebration fantasy. In this daydream, friends and anyone and everyone who has ever cared about me gather to rejoice in the liberation of my body from pills, injections, and sickness. I am cured of diabetes, congestive heart failure, and kidney disease. I am free, free, free! And I am surrounded by scores of people who share my joy.

Georgette flies in from Florida, and Heather wings her way from Denver. Mark comes from San Francisco and Tony from Santa Barbara. Rob leaves his wife and work in Shanghai to give me a big hug. Robin, who is always struggling to make ends meet, somehow gets the money together to buy a plane ticket from Seattle. Jose pulls himself away from an endless stream of meetings and commitments. Erin brngs her baby, and Chris brings his boyfriend. Tom, who is deathly afraid of hospitals, illness, and death, is there. So are my favorite massage clients, Carol and Karen. Katherine, with whom I've traded massages for facials for well over a decade, and Sue, with whom I trade massages, are there too.

Old lovers and old flames with whom I have not corresponded in decades somehow know about my happy turn of events and show up at my doorstep, just in time for the party. Ken arrives from Tuscon and Tuyen Tran from Detroit. Naguib Akbar, the Pakistani with the beautiful doe eyes, red rose in hand, kisses my cheek. Charlie, who kissed me in a golden aspen forest outside Flagstaff, tells me he wouldn't have missed this for the world. Sean, wherever he is--surfing in Costa Rica or growing pot in Mendocino County--drops what he's doing and rushes to the gala. Even Mike rises from his grave to make an appearance.

Daphne and Alexi and Amy and Dan and Araia and Rachel and Matt are there. So are my high school friends Liz and Mary. My acupuncturist, Dr. Mai, whom I've seen at least once a week for more than four years, is forever inscrutable, but inwardly oh so pleased that I have been restored to health. Dr. Lin, the ever-kind internist, and Dr. Phan, my ever-concerned cardiologist, can't believe it, as my healing flies in the face of their medical understanding, but they, too, are happy for me.

All gather around as I ceremoniously eat a dark chocolate as a sign of my newfound freedom to enjoy a sweet without worrying about how it will increase my blood sugar and damage my organs. Everyone cheers, then closes in for kisses and hugs.

Of course, I know that if I ever was healed, very few of these people would come to my celebration. They would be too busy with work or school or with their family or other friends or with their housework. They wouldn't have the time or the interest because they wouldn't understand what this meant. For the most part, they are healthy and have been healthy all their lives, so they would not appreciate what I have gone through and what it means to be free of all this.

The only person I can be sure who would be there is my son, Aaron. He has seen me on the brink of death many times. He's been in the ambulances with me and he's watched the paramedics bring me back to life. He, like no one else, would rejoice with me. This would be celebration enough.

A Huge Change, A Major Shift in my Thinking

Since April 1972, when I was diagnosed with diabetes, I have taken injections, up to six a day. Over the course of these 35 1/2 years, I have taken in excess of 50,000 shots.

Most people cringe when they find out I take injections. Some claim they couldn't do it, even if their life depended on it. Yet I have always considered injections preferrable to an insulin pump.

A pump that delivers insulin to the body 24/7 gives the diabetic a steady stream of insulin throughout the day and night, much like a functioning pancreas. It's supposed to be much better at regulating blood sugar than injections given before meals and before bed. Yet I have always resisted getting a pump.

I felt that a pump was giving up on the idea that I would ever be healed. From an outsider's point of view, I seem to negotiate the world as does everyone else--in a logical, practical manner. But truly, I believe in magic and miracles. I have always felt, all these many years, that one day I would wake up and no longer need insulin. I would be cured. No injections ever again. No testing my blood sugar. No gloomy reports from doctors about the dire state of my kidneys and my heart. I would be free and clear, healthy and happy to the end of my days.

A pump seemed the antithesis of magic and miracles. It would be attached to my body every waking and sleeping moment through a needle and a delivery tube. For years I resisted. Now I've finally given in.

Tomorrow I meet with a rep who will show me how to wear the pump, how to inject the needle that stays in for three days at a time, how to hide the pump under my shirt or my skirt or how to clip it to my belt as if it were a pager.

I know this will be better for my health. It should prevent the dangerously low blood sugars that have sent me to the emergency room twice in the last few months and the dangerously high sugars that destroy my kidneys and my heart.

I know it's for the best, but it makes me a little sad. Perhaps I can find a way to still hold on to the magic and miracle of future healing even while wearing an insulin pump.

Making Love with the Man in the Bookstore, With a Little Help from Albinoni

I am listening to Tomaso Albinoni’s adagios as I often do in the evenings when, at home alone, I am ready for love, the kind of love the man who composed this music must surely have been very capable of giving.

In his scores, Albinoni captures both the mournfulness of the human condition and its boundless joy. (Perhaps that is what I admire about Celtic music as well.) There is an intimacy to his notes that touches me very deeply. I am filled with images of a lover slowly kissing my body and of angels gently stroking my brow. The sensual and the ethereal wrapped in one package, just as I have always dreamed that love with the man who is matched to me would be.

“Adagio in G Minor” is my favorite, and I’m not alone. It is one of the most frequently recorded pieces of Baroque music. First published in 1958, the year of my birth, it is actually a reconstruction of fragments assembled after the bombing of the Dresden State Library during World War II. Much of Albinoni’s compositions and writings were turned to ashes in the ruthless decimation of this city by Allied forces. Consequently, little is known of the personal life of the composer, save that he was married and that he was independently wealthy and so did not require the patronage of royalty or the church.

Like me, Albinoni had diabetes, from which he perished in 1751 at the age of 79.

I had not known of these two links between my life and that of the composer until just a few minutes ago, when I looked Albinoni up on wikipedia. For all the years—or has it been decades!—that I have been entranced by his adagios, I had never bothered to find out anything about the man. His music is potent enough to make me weep and simultaneously be filled with otherworldly bliss, so I had no need to know anything about the man behind the music.

Years ago, perhaps 15 years ago, I met an Albinoni lover at Borders. I was speaking with the clerk, describing to him the music I had heard and wished to acquire. I didn’t know the name of the composer, I said, but I thought his name began with an “A” and he was Italian. The clerk was clueless, but the handsome Middle-Eastern man who happened to be standing next to me, said that I must be speaking of Albinoni. He said that he could recommend a tape—yes, this was before CDs—but that he would have to check his collection at home and get back to me. The next day he faxed the title of his favorite collection to me, with the salutation: “Dear Fellow Albinoni Lover.”

Of course, I followed this man’s advice and bought “Adagios,” an Erato recording. Years later, when I no longer had a cassette player, I replaced it with the CD.

Pretty much every time I play Albinoni, I think of the man in the bookstore that somehow gets jumbled in my mind as a record store. I remember the man dressed in a white tailored shirt and tan Dockers, but that could be wrong too. What I do remember is the man’s thoughtfulness, his taking the time to send me a fax.

I know this may sound strange to all the women out there who have been lavished with gifts and thoughtfulness by the men in their lives, but such genuine kindness and giving from a man have been rare occurrences for me. Had email been in common use 15 years ago, the Middle-Eastern man and I would have continued to correspond, which might have led to a romance, and perhaps he would be here with me tonight, listening to Albinoni and kissing my body.

Damned if I Do, Damned if I Don't

I was in the emergency room yesterday, the seventh or eighth time in the last 12 months. I lose count.

I went in with chest constriction and nausea. A number of explanations were tossed about, but what was clear was that I had fluid in my lungs and this was crippling my breathing. I have had edema for the past few months. My weight sometimes fluctuates six pounds, up or down, a day.

My ankles are fat-girl ankles. My thighs are tight with water. Yet I'm also dehydrated. The water isn't going where it should be going, and it's hanging around places when it should be moving. So do I drink plenty of water or do I limit my fluid intake?

These are the kind of dilemmas I'm facing. Do I eat protein because it's good for the heart or do I abstain because it makes my kidneys work harder? Should I have a glass of dry red wine with supper because it is a natural diuretic, it stimulates circulation, and it reduces blood sugar, or do I avoid alcohol in accordance with my vegan diet?

Though my blood sugar has been well-controlled for several weeks, yesterday it was sky-high. The explanation for that was that blood sugar being out of whack is a sign from the body that something else is seriously wrong. In this case, that I had water in my lungs and was having trouble breathing. So the hospital nurses gave me multiple insulin shots--something I would have never done at home. As a result, I had a very bad insulin reaction early this morning. My blood sugar had dipped dangerously low.

Such wild swings from 600+ blood sugars to those under 50 are hard for the body to take, and so I was very dizzy this morning following the reaction--so much so that I had to hang onto walls to walk.

I really don't know what I'm supposed to do. I'm eating right. I'm getting acupuncture and EECP treatments to increase blood flow. I'm taking 16 supplements. And I've got a helluva good attitude. What's more, I frequently ask aloud to God or an angel or anyone who may be listening, "Tell me what I am to do to heal my body!"

While I'm waiting for an answer, the doctors shrug their shoulders and the alternative practitioners shake their heads.