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.

19 thoughts on “Day 1. Is This The End of the Road?

  1. I love that your bucket list overflows other folks’ bucket lists. because that’s the kind of generous you are. onelove!

  2. Finally. Seriously… the countdown. Okay. You should be dead. You are not dead yet (Go Monty Phyton!). And now we can start a… count-up to the number of days ahead. It is utterly true that you have a nasty congenital disorder that puts your life in danger at every turn and that requires your perennial attention. But it is equally true that there’s still plenty of things you do. Your ability at finding marvels wherever you are, are a match to Xavier de Maistre’s “Voyage around my Room”.
    As for bucket lists… I don’t think I trust them either. Mix metaphors, kick the bucket and spill all the objects placed in it. Let’s play with the pieces, broken or otherwise. Fate is a bitch, we get what we don’t want and what we want is usually unattainable. And yet we play on. We are all “limited engagements” but not all plays are worth attending. Trust me on this: tickets to your play have been sold out since day one. Check out the waiting line.

  3. Sometimes I think you can be afraid of a thing for a long time, a distant bad thing on the horizon, and then it happens, and you have a little less to be afraid of. It’s not exactly a happy feeling, but there is relief in it, in my experience. Take the relief. Dive in.

    At the end of the road is when you go off road, where all the adventure is.

  4. Happy 48th Birthday ! Hope you plan to do something special and if that something special can not happen on your birthday make it happen on a good day for you.

    It’s interesting how one perspective changes with life’s experiences. I loved your theories for couples. Maybe it’s partially true!
    Happy birthday!

    • Thanks, Edie! Yes indeed! Had a birthday celebration with family this weekend, and will celebrate the big day with friends and mom tomorrow and on the weekend with friends. Whew! There isn’t a single drop of dead in me!


  5. Dear Heidi,

    Now it is true. You are gone. Fuck. I’m glad you’ve proved the doctor’s diagnostic wrong, even if it wasn’t by much. I hate the fact you’re dead. I guess I’m hating you, right now. “What do you have to do this to me?” is what comes to mind, and then your comment: “Principessa… this is about my death not about your life.” Glad that you can put things in perspective. Still. It’ll take me a long while to accept the fact that you always fought to be the first one to try new things. Isn’t this death business taking it to the extreme?
    In any event, however you want to slice it, I’ve been exceedingly lucky. I got to know you, and I got to become your friend. Some people believe in god or something. I don’t need that, because there’s you. Until now, you were there, present, to share, laugh and curse. And you’ll stay put, since your life has become so intrinsically linked to mine that I cannot remember a time when you were not around. Hey, I’m starting to fabricate fake memories, to extend your presence both towards the past and the future.

  6. Am thrown for the proverbial loop by the sudden disappearance of Miss Heidi into the ether from whence we come and go. Damn, girl. Just when you got me all committed to this Artist’s Way project and actually doing the exercises. You were a lesson in the now, as if in exchange for the EDS gene you had jettisoned the procrastination one. Right now. Let’s do it now. So I’m going to try to follow your lead in the now department. Except I’m sad that you left us now. Later would have been okay for that, you know? Except that I also know how much you suffered, and I hope that you didn’t as you were leaving because you deserved a merciful pain-free exit. If there is an afterlife, hon, I know you’re throwing down umbrella drinks at your salon with Dante, and seducing all the angels. If the reincarnation story is the one, a Buddhist monk told my friend Cayo, as she wept the loss of her pet beside him on the Metro, that the last round before Nirvana is as a cat in an American household. I’ll keep an eye out for you, but I suspect you chose a Manhattan penthouse. Or maybe something more street so you could roam around at whim. New York for sure, though.

    Thanks for every brilliant glittering shiny smart honest and enduring bit of it, Heidi. You make me want to be more beautiful, intelligent, and hospitable. I miss you something terrible. And will strive to live in the stylish now you modeled on this life’s runway for us all. Onelove, forevermore….

  7. Oh Heidi. I am so very sad. I miss you so terribly. I have such pain knowing you’re not here. I want to text you and say hey little sister I’m thinking of you and I love you. I wanted you to know that one last time before you slipped away. I’ve cried so much today and made a fool of myself at work — missing you, feeling sad for your last terrible few years, thinking of the million little things you did and that I loved about you.

    I got to know you for almost 49 years, and for that I am eternally grateful. We had amazing times. Living all over the world, trips, vacations, long talks, long walks. We had to be best friends again every one of the many times we picked up and moved. You helped me with my love life, my career, parenting my children and basically every other aspect of my existence. I loved that I could always call you or text you and you were ready willing and able to help me see things in a broader perspective or turn a shit-sandwich into something much more palatable. I fear I can never find someone who will fill the void you left.

    I spent lots of time in your apartment last night and read your journals and stories. I soaked you in. I lay in your bed for a long time and looked around at what you must have looked at 10,000,000 times. I never knew you were so brave, or so tough. I never understood what you endured and how you lived your last few years. I saw your courage and your seemingly never ending optimism in the face of tremendous adversity and repeated setbacks. I never knew you had that in you, little sister and now I respect you even more than I already did. I’m so very sorry you had to finish your last years in that way, in that prison. I’m sorry I didn’t recognize it for what it was. I know in my heart you never deserved it. You were a good soul, a loving person. You dedicated your life to helping others and bringing joy and support to your friends and family and to me.

    Today I’m comforted only in knowing you’re in a glorious happy place. Filled with real joy, no more pain, no more migraines, brain fog or tiredness, and all the delicious treats that you were forced to miss out on for all those years. You, more than anyone I can think of, deserve this Heidi.

    I look forward to the day when we can resume being brother and sister. We were always close and the hole in my heart will never heal until I can be with you again some day up there.

  8. Dearest Heidi…I’m thinking about you and your family of friends this evening and I just wanted to thank you for all the sweet memories I have of our soulful conversations. I’m grateful for your encouragement about my writing and for having such a brilliant sense of humor. Reading your blog is better than the world’s finest college education and I admire how you met with life eye-to-eye in a way where you found deep well-springs of compassion, honesty and intelligence. I love how you discovered kindred spirits in the most unlikely of places and I’m sure that I will think of you when I open up a book that makes me contemplate something I hadn’t ever considered before. Your words often had that effect on me and so many others, and I get the sense that you’re now on a great adventure where all you can do is smile.

  9. My heartfelt condolences, Greg. She was a star, and loved her big brother. She got such a kick out of pretending to be pregnant for testing the app! Wishing you and your family every comfort…Randi

  10. Greg, you and your entire family were truly important in Heidi’s life. Not just that she loved you all – she did, lots – but that the fact of you being there made her life better in every sense; for that she was enormously grateful.


  11. I came across this blog via random happenstance and irrelevant means, but was truly moved by its contents.
    I didn’t know you, but I won’t forget you.
    Thank you.

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