Emily’s “Bucket List” of Life Dreams

Posted by on May 19, 2014 in Blog, Emily's Entourage Blog | 3 comments

In my 29 years with CF, there are still so many things I don’t understand about this crazy disease, but if there’s one thing I’ve learned, it’s that uncertainty is CF’s hallmark characteristic.

Lung infections that force you to put your whole life on hold can pop up without any warning and disruptions become par for the course. It’s liberating on the one hand, as it forces you to live in the present and not bank too heavily on planning for the future; but it’s also a cruel reminder of CF’s cruel, insidious and omnipresent nature. It’s always lurking below the surface, ready to knock you down or change your course without a moment’s notice.

The truth is that life is fragile and tenuous for everyone, but I think those of us with CF and other life-threatening illnesses live with an acute awareness of that sobering reality every single day.

It can be hard to keep moving forward in a life rife with disruption and uncertainty, but I think one thing that keeps me afloat — hopeful and motivated through it all — is dreams. Big ones and small, some more easily achievable than others, but all opportunities that make my eyes wide with wonderment, my stomach tingle with excitement, and my heart and soul hungry for more time, more healthy years to do them all.

And so, with that, I’d like to share my bucket list of life dreams:

To go to a mind/body/spirit spa
To travel to Switzerland, Greece, Italy and Australia
To attend a tennis grand slam tournament, preferably in Europe
To hike to the top of a mountain and spin in circles at the top with my arms out wide
To visit Charleston, South Carolina
To go on a cross country road trip
To get my email inbox down to one page
To have my whole family live in the same city
To learn how to take great photographs
To write a blog and update it regularly
To give a speech “off the cuff” and totally nail it
To take a digital graphic design class
To travel to Portland, Oregon and Seattle, Washington
To see a kangaroo in natural habitat
To take a trip just with my siblings
To write a New York Times op ed and actually get it published
To go back to Paris and stay for some time.

Full disclosure: I’ve never loved the term “bucket list” because it makes it seem like once you check off all the items, it’s time to die and that just feels morbid. But as I wrote these dreams out, it dawned on me that my list can be an evolving one — a living, breathing, working document, if you will.

So I’d like to hereby formally announce that this list is NOT an exhaustive one. It will change and it will grow and an item on the list will not necessarily be complete with just one check or strikethrough. Some things — like trips to Paris — may be better suited for tally marks. The more, the better. I mean… right?!

And even if I one day get to accomplish all of these amazing things listed above, it doesn’t mean my time here is up, my work is done. It just means it’s time to add some new items to the list and start dreaming up more adventures.

Now I want to hear from you! Do you have a “bucket list”? What are YOUR dreams in life? Any recommended additions for mine? As you now know, I’m always looking to add more!

Emily and Liza in Paris

3 Comments

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  1. Meryl Toback

    - to have all my family live in one city
    - to have some time in this life to enjoy some retirement time with Michael
    - to see my brother again
    - to learn how to live in the moment always
    - to learn half of what you have learned through your journey while I still have time to live it

  2. Toby Anne Axelrod

    I never made a bucket list but I’d like to see and hear you speak off the cuff and nail it! So that’s the first thing I will put on my list. It’s been WAY too long since I have seen any of your family, except on FB (and I’ve seen Liza a few years ago with Jane in NY). I’d like to meet you and your whole family in Italy and have a great dish of pasta together with truffles and butter, or I could meet you all in Greece and we could dip our toes in the waters of the Aegean on some island.
    In fact, I would like to have a month-long stay in a very peaceful place, preferably on a calm and clear sea, where I could write, swim, enjoy the company of good friends and good food and also enjoy silence and nature. Maybe I would stay there even longer!
    Like you, I will add to my list…thanks for your inspiration!

  3. Audrey Cook

    Hey, is this Emily that checks this? My name is Audrey Cook, and my grandmother told me I had to find you on the internet…she made it sound like you had something to do with something called Laps? that raises money for CF. I’m not sure she had her story straight, but anyway all that to say, I apologize if I have the wrong Emily with CF, but I’m still going to post this because we have a lot in common. I am 32 years old and I have an undiagnosed lung disorder that behaves very much like CF. I don’t have problems with any other organs, well, except my esophagus but all the lung stuff is very similar. I had to do the breathing treatments twice a day growing up and got the postural drainage beatings and the IV antibiotics. And I have a vest that I have been using for a few years now. And now I’m on the list waiting for a double lung transplant. So I know what it is like. And I have been thinking the same thing about my bucket list. It does need a different name! Some of the things on my list include riding an elephant (which apparently is illegal in the state I live in, so I’ll have to go elsewhere), going to Hawaii, learning to drive a stick shift, becoming a competent cook, rescuing Dobermans, going for a ride in a hot air balloon, taking ballet classes again, taking a cruise of the Mediterranean possibly with all of my female relatives, and going to some sort of all inclusive resort at a tropical location. …and I’m sure I’ll come up with some more! I wanted to thank you and your entourage, as well, for all that you are doing to raise money for CF. I know that I am helped by the advances made in treating it even if the cure might not be the same for me. …Oh, and I also used to play the flute! Haha, Please shoot me an email sometime if you’d like to chat.

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