Day 1. Is This The End of the Road?

So, dear friends… on the eve of my “death,” I must stop to consider a few big ideas.  More than a few, really.

I know logically that on November 13, 2012, the day I turn 48, it is no more likely that I will die from Vascular Type Ehlers Danlos Syndrome complications than from getting hit by a limousine bus on its way to Dulles International Airport.  There is no more likelihood of that doctor’s prediction coming true than if the doctor himself had told me he had placed a voodoo curse on me that would take effect on my 48th birthday.

Still, it’s easy for me to make a brave face in public and pronounce the doctor’s “curse,” of a shortened life to be fake. However, new, more serious health conditions have begun to show themselves so close to this infelicitous birthday: pulmonary aneurysms (with the attendant shortness of breath), and now a new aneurysm in my brain. It is easy to wonder whether that doctor was right after all, or whether I am, at age 48, about to stand on a slippery slope that drops away into nothingness.

When, in the dark of night, or on particularly grey days, I let my deepest imagination run amok, I worry that I will die soon, and that, as Hollywood has instructed me, I ought to have a Bucket List, that storied list of things to accomplish before dying.

For most people, making such a list is a game of pretend, like deciding how to spend the money they wish to win in the lottery the next day. But when I try to make my bucket list, it’s serious business.  The items are things I intend to start doing tomorrow.  That’s a lot of pressure, so much that the paper stays blank.  What to do? Travel seems to me like the best bucket list plan, so good; I can’t think of a substitute. Yet, what kind of travel makes sense for me, I ask myself, when my leg, feet, arms, elbows, knee and shoulder joints hurt so much from doing three activities in a day (like a doctor appointment, grocery shopping, and going to the tanning bed) that I am in bed the following day), so much that traveling in an airport sounds not just impossible, but awful, even to me, sworn travel lover that I am.  I love travel so much that I can’t think of a substitute entry for my bucket list. If I don’t find out about the rest of the world on my last venture, well, what can I possibly do?

In the true twenty-first century mode, I allow an internet search to do the thinking for me.  Happily, I find a Pinterest page called Kate’s Bucket List.  Each of her fantastic images has white text across the middle: “I want to catch the bouquet at a wedding,” or “I want to visit Turkey and drink tea from a Samovar.”

One reason I find Kate’s Bucket list to be so wonderful is that in addition to the expected travel items like,  “I want to go to NYC Fashion Week,” she makes wonderful wishes, like to dance under the stars, ride on the back of a motorcycle, and witness a wedding proposal.  They are unselfish wishes and communicate the simplicity and authenticity of a young girl—qualities I realize I am missing.  It is this kind of idea, and this kind of openness that I cannot locate in myself, and I realize that I have been looking for it for several years now.  I’ve tried, unsuccessfully, to explain it to my therapist as the sense of wonder and bewilderment I had in college, that gave me the unfettered ability to sit down and write, just any old time, about any old subject.  I had theories about important things.

I remember that I used to analyze couples and tell them (or more likely one half of the couple) that it was my theory that the best couples, the ones that stay together, are those who have found their neurotic compliment, their match in craziness.  Assuming it is true that all of us are a little (or a lot) crazy in our individual ways, we just need someone who understands and enjoys our unique sensibilities, and as much as possible keeps us from spiraling off the deep end.  I didn’t realize how flawed my theory was, but I believed it ardently and liked to tell people about it.  I had lots of those.

So, maybe my travel for my bucket list should be more amorphous than a single week-long trip to a geographical place.  Maybe my journey should be back to that place of earnestness, where I had theories, and took more delight in things.  It makes me happy just writing about it.  That’s a bucket list item.  I just don’t know how to attach an image to it and a label.c

Oh, there are a couple of things.  I want to wear a size 6 again.  And want to see the Barnes Collection in Philadelphia.  I want to see my nephews be successful, however they want to define that, in school, in life, and I want my little brother to find his path and be gloriously happy in life, and my big brother to find a new path and get the fantastic happiness he deserves.  I want my parents to live as long as possible, as healthy as they can.  But are those buckets?

Really, I owe Dr. Dumbass a great big thanks for his pronouncement about my diminishing years left on the planet when I was 44.  Otherwise, I would have kept on living with a dimmed introspection.  I would have cursed the bad days of my illness so much more than I did, because I would not have been aware.  Just for example, this week, I supposedly had 9 Days left to live; it would have been easy then to give up and go back to bed when I found it hard to get out of bed because of an all encompassing pain and fatigue, and I had to wear a wrist brace to type because my wrist was too sore and weak.  However, I understood the day to be special and important the same because it was Day 9. As a result, I made myself get up, get dressed, and make the day matter to me somehow. So what if I was not physically able to be jetting about the planet to the beaches of the Dominican Republic or to the Taj Mahal?

I made it as fantastic as Day 9 could be, given my circumstances. I have learned to do this as a mindfulness practice this year, on the days when I have felt good, and on the days like Day 9, that were not great.

And for all that practice, for the focus I placed on making myself aware these last 364 days, I came to understand that this birthday is momentous simply because I get to have it. So were all the others before it.  I just didn’t realize! All the more reason to celebrate.

What I learned this year could (and may) fill a whole book.  But as I reread my rambling, disconnected entries—and their generous replies—I am struck deep in my chest that the most important thing I learned, perhaps the most important lesson I have ever learned, is how much my friends and family—and even strangers—love me.

 How is that possible? Sick, boring me.  I can’t even go out to dinner anymore, much less make it to the theater.  Most days, a litany of symptoms exhausts me; I imagine just hearing about them drives most of you to drink at lunchtime (though some of you will secretly thank me for the excuse….and you know who you are!).

 Most importantly, though, I have learned that I had better listen when the likes of you people have taken the time to be so kind.

Day 198. A Mental Vacation

Hotel Palace Ios. Sigh.

This has been a week of upheaval and strife.  I’m tired.  I see I’m down to less than 200 days left to live.  Supposedly.  Should I have marked that somehow?

So why does my mind drift instead toward the Island of Paros, in the Cyclades, Greece?

Two, maybe three days of my life I spent on that tiny island, twenty years ago, soaking up the sun, drinking fruity drinks, eating phenomenally salty feta cheese and sucking my fingers, after juicy kalamata olives.

We spent one idyllic day, on Golden Beach, John and my brother Greg and I.  The place was aptly named, golden, and deserted, except for a few German sunbathers and some French windsurfers, who (we thought, hilariously) windsurfed in the nude. The day was perfect for no special reason:  but the weather was exquisite, not too hot or cold, with the sun shining on us without a break from clouds, but somehow not so blindingly that we felt a need to get into the shade.  We could have stayed all day and into the dark.  Did we?  I don’t remember.

I only remember how funny those naked French windsurfers were, how immature John and I were about what all was flopping in the wind. Then John and I swimming in the winedark sea, taking off our trunks and doing backward hand stands toward the beach, both of us laughing so hard. I laughed so hard that I aspirated sea water. But we were terribly disappointed that Greg did not see our Aegean Sea mooning show. Still, my abs hurt the next day from how hard we laughed.  Oh, we knew we were immature Americans! I have never grown up since.

So, I am remembering this day so fondly, the way the wind cooled my sunburned skin, the way my red skin grew white polka-dots when it got chill goosebumps.  I relished the coolness of the icy bottle of water I know Greg would have bought me (because that’s the kind of guy he is).  I remember it, return to it now, because at the time, it never occurred to me that it was the last trip of its kind, for me.

I mean, I never appreciated it for what it was, for the sensations I was having, the wonderful place, for the people I was with. I was having a fantastic time. But at the same time, a tornado of some kind always rushed my cerebral cortex: I was feeling left out because I had no love interest, or no boys looked at me, or whatever.  The first couple of days we were there on the previous island, a spider bit me….in the face…so I was sure that everyone would stare at my swollen face. I always found something to bitch about, if not to someone else, then to myself.  For that reason, I didn’t fully enjoy the trip. What a tragedy.  What a fool I was.

Thus, now that I am sick and it’s hard for me to travel—I had to quit (or at least delay) Physical Therapy this week for complex reasons,  I’ve been feeling like I can’t get anything done, and then yesterday I tore the skin on my leg AGAIN, thus another trip to the ER, where (at least) they glued it shut (I won’t describe how painful that is!)—All these things are reminders that keeping it together at home is challenging enough that traveling is not going to be an option for me.

I’m still remembering that trip to Greece twenty years ago.  Another place we stayed was the Hotel Palace Ios (which is in the picture on the left, overhanging the sea), an absolutely gorgeous white-washed hotel, cut out of the mountain-ish hill, overhanging a cove of the sea (where divers would go every morning to harvest the squid for calamari).  The way up to the rooms involved going up beautiful grey slate steps.  Following the grey slate down, we wound up at the pool, made of Grecian blue and white tile.  It was on a fantastic slate patio with a bar that played fantastic music all day, run by a fun, gorgeous bartender, Photis.  All day long, a few old Greek men sat at the bar drinking Ouzo.  Who needed the beach below, when we could swim in that elegant pool?

When someone asks me to form an image of relaxation, I imagine myself catching the sun and chill on Golden Beach, or in bed one morning at the Hotel Palace Ios with the cool breeze blowing in the window, and Pink Floyd’s “Time” playing loudly at the pool in the Cyclades Islands in Greece, which may have been my life’s peak experience. I may not have enjoyed it fully then, but I will enjoy it more than enough now, over and over. I guess I can travel….in my mind.

What about you?  Any peak experiences of your youth that you relive?

And for that matter, what image do you form in your mind when the voice on the relaxation tape tells you to picture a relaxing place?