Yoni and I at Heartland Farm in Markham, VA. More pictures from that in my next post. |
Ugh. So, I know I said "exciting things were in the works(!)," but it appears I spoke too soon. Premal and I have been looking for a home to call own own since moving to Denver in July, and it seemed as though we had finally found one. It was a stately town home in the city center, blocks away from the Capitol, art museum, and some of our very favorite eateries. The finishes were classic, and the kitchen had been designed by a chef. I loved it. And so, we dug in.
Contracts were drawn up, and read, and signed, and shared, and returned, and read and signed. And then we exhaled, and smiled nervously at one another. Then, lenders and owners and inspectors and neighbors were called and called and called. Then more contracts came, and I read all the small print, then we signed and returned, and wrote checks. And as I worked from our living room in the basement of my mother's home, workers broke ground outside my window digging a tremendous hole that will someday form a patio and passage into this space. We'd share smiles though the glass throughout the day, comrades in adjoined trenches boring our way through the tasks at hand. Then suddenly, both the workers and I stopped. Their reason was quite simple, the hole was dug, and it was time to move on to other tasks. I, on the other hand had come upon the dark underbelly of my dream home, and we deemed the venture too risky. In the aftermath, I felt a lot like this. What did I have to show for my weeks of work? I stood by my window, envious of the tangibility of the completed task on the other side, and the satisfaction that comes from a physical task well done. I wanted to wallow, but I did not want to stagnate. So I decided to make something--and nurse my heavy heart while I was at it.
Premal has been hankering for some homemade ice cream for a while, and we figured nothing goes together like self pity, and a pint of frozen deliciousness. The recipe is based on this keeper from David Leboitz, reworked with a modern twist on traditional Indian flavors.
Saffron Ice Cream with Candied Pistachios (or Kesar Pista)
- 1 c. whole milk
- pinch of salt
- 3/4 c. sugar
- 15-ish strands saffron (I bought mine at Costco)
- 2 c. heavy cream
- 5 egg yolks (it's a lot, but you won't be sorry)
- 1/2 t. vanilla extract
- 1/2 c. shelled pistachios--roughly chopped
- 1 t. butter
- 2 T. brown sugar
- pinch salt
Heat the milk, salt, and sugar in a saucepan until sugar dissolves. Add saffron, remove from heat and let steep covered while you watch an episode of Breaking Bad. Pour cream in a bowl (DL says to put said bowl in an ice bath. I don't know why, but I still did it). Rewarm milk mixture, and temper yolks by adding a small amount of milk mixture to them while whisking. Add tempered yolks to milk mix and cook over low heat, stirring constantly and scraping the bottom with a heat-resistant spatula, until the custard thickens enough to coat the spatula. Strain the custard into the heavy cream. Stir until cool, add the vanilla extract, then chill thoroughly (overnight if in the fridge, or approx. one more episode of Breaking Bad if you throw it in the freezer. Guess which I did?) Meanwhile, candy your pistachios by melting butter in a small saucepan, add brown sugar and 1 T. water. Bring to boil (should be quick) add nuts and salt. Stir till all nuts are coated evenly, remove from heat and spread on a non-stick surface to cool. Retrieve custard from the freezer and freeze in your ice cream maker according to the manufacturer’s instructions, adding nuts towards the end of the freezing process.
Since my first and second talks went up on TED, I've received a steady flow of letters, emails and messages from people young and old about their hopes, their fears, their dreams. For the most part, I find these communiques very encouraging and they tend to make me happy. But I am concerned by an alarming trend I see in some people who write me that have chronic illness: people write me looking for approval in dangerous decisions. For this reason, I feel like I have to clarify my message.
1. Listen to your doctors and to the best of your ability, follow their directions. It is true that when I was diagnosed with PH 9 years ago, one top specialist told me not to sing. But many, many other top doctors told me it was fine and even good for me to do it. There wasn't a single study or medical journal that corroborated the doctor's claims of singing exacerbating symptoms of Pulmonary Arterial Hypertension. Not one. When I became too sick to travel and my doctors told me to stop performing, I did so immediately because I knew they were right. It is important your doctor understands you and your hopes and your dreams. It is also important you understand how those hopes and dreams must be shaped into a new reality.
2. Gosh darnet, I know they are annoying as heck, but taking your medications is a lot less annoying than dying or getting a translpant. Seriously. There are too many people waiting for transplants for doctors to give them to patients who aren't doing their very best to keep themselves healthy now. And transplant is way to complicated to get one before it is absolutely necessary. There are SO may nights I have gone to bed, wishing I still had pulmonary hypertension instead of my transplanted lungs. Please keep whatever you have for as long as humanly possible. This means doing extra work. I did a lot of qigong, I changed my diet, I exercised every single day and I ate substantially less salt than doctors told me I could. Even now, some doctors give their patients more leeway than I give myself with medications. But the single most predictive factor in a transplant's success is patient compliance. The doctor's can't see what you're doing but your body knows. Your kidney's are keenly aware if you are or are not drinking the water you need to keep them healthy and your immune system will know as soon as you start getting loose on time with your meds. Before you have time to react, you'll be in chronic rejection
3. Don't go Wall Street on your life. Living life to the fullest is about more than quarterly earnings or Carpe Diem. Mortality is too precious to place thrills over true happiness and longevity. When I was first diagnosed with a stage four case of PH, all I wanted to do was be with my family in Denver. But the altitude was already having a severely detrimental impact on my health. I went to sea level because I loved them and because they loved me. My mom would rather talk to me on the phone than talk to my grave. There were many times I wanted to go home for holidays, events, graduations, etc. and I chose not to because I knew doing so would put my life at a significantly greater risk. When I finally went home to say goodbye to my father at his funeral, it precipitated my own transplant. I fear I couldn't have forgiven myself had I not gone, but take your life seriously. There are tens and hundreds of thousands of dollars going into keeping you alive, not expediting your joyride to a faster end.
4. Show gratitude to those around you. Often times, whether we like it or not, being sick precipitates a huge amount of additional attention. That attention is almost necessarily be taken from some other worthy subject. So remember to be nice. To say thank you. To show kindness to the people who might be neglected for your sake. In the same breath, don't feel guilty for it. Be grateful that it is there and show that gratitude by taking the best care of yourself you can.
5. Sometimes things go really, really wrong. Regardless of how diligent you are with your meds and instructions, regardless of how many things you are doing right or wrong, sometimes things just happen. When I began to reject my lungs, I had this overwhelming sense of guilt. I shouldn't have kissed that baby. If only I'd been been more careful with my meds. I shouldn't have started performing again. One day shortly after I was married and the sadness of my deteriorating health seemed overwhelming, I was pouring over every action in the three months when the rejection had taken place, trying to understand everything I might have done wrong. Yoni took me by my emaciated shoulders and told me, "Charity, you've gotta stop doing this. It's not helping." He was absolutely right. Sometimes, figuring our what we did wrong is really important so we don't do it again. But sometimes, letting go is even more important.
I am so grateful to report that my appointment went REALLY well. I have been here much longer than I thought was possible 9 years ago and there have been many times when I thought my turn on earth was over. If you or a loved one are going through a serious illness, I want you to know that despite the serious challenges, there is so much wonder to be enjoyed and witnessed. It's worth sticking around. And I hope I can for a very long time to come.
They say that "with age comes responsibility," and with my last month (and recent birthday) as evidence, I'm inclined to believe "society" on this one. I'm not going to go into full detail here on what all of these responsibilities are (because though I'm not the most mystically-inclined soul, I do have a weakness for superstition), but I will say that exciting things seem to be in the works! Instead, I'm sharing a roundup of my favorite diversions that have been keeping me me, in spite of the piles of contracts that seem intent of transforming me into a soulless zombie (which, if I'm being honest, is not the worst fate I've ever entertained).
Brilliant ways to elevate your camping game.
I'm always impressed by how comprehensive R29's dress your body guides are.
True stories about love and living.
Five out of Five TD sisters agree, this is the only way to bike.
Speaking of biking, the perfect biker jacket?
Crazy beautiful music inspired by Lyme disease?
I've been trolling some of my sisters' old recipes recently because I miss them, and their cooking.

The day is growing old, but a new year is just beginning for the one and only Liberty Belle. Just a few more than a few years back when Liberty and I were still roommates, she was rather upset about the prospect of her birthday. We'd just moved to Baltimore. We didn't know a lot of people and gosh darnit, she was turning 18. Newly wedded Kimber had just moved to New York City with David. Since Kimber was usually the keeper of exciting celebrations, Liberty was pretty sure her chances at an appropriate party were minimal.
Unbeknownst to her, Kimber and I had splurged and bought tickets for a matinee of Wicked. I told Liberty we would go up for the weekend to see Kimber. We went up, got lost in what I still remember as one of the most spectacular street fairs I've ever been to, made our way to Wicked where we cried off all of our mascara and then we got a call. It was my grandfather. He and my grandmother were in town for a very special event. We needed to be there in an hour. The attire was black tie, and we were to stop at his hotel. He would give us money to buy what we needed. The next hour was spent running from store to store, trying to find evening wear that wasn't absurdly expensive. Libby found a little number that looked like star dust. I ended up in one of my grandmother's skirts with the top I was wearing. We arrived just in time to go through metal detectors, meet a few presidents and the U.N. Secretary General. My grandfather must have realized there weren't enough seats, so he took us to the hotel restaurant, ordered us dinner and told us to have fun.
Meanwhile, there had been a steady stream of girls in tiaras ascending the escalators in the Marriott at Times Square. We got curious and finally decided to investigate. We walked into the ballroom like we owned the place. We found out we were attending the after party of Miss Polish America. The evening culminated in the one and only Liberty Belle leading a conga line of hundreds of American Poles, snaking around tables, onto the stage and into the lobby.
To me, this whole experience encompasses who Liberty Belle is. She gets nervous and emotional, but once you get into things, it is SO much more fun and exciting that you could have ever imagined. She's like a lucky charm: When she's there, wondrous things happen. Unexpected jokes are made, exquisite places are found and the mundane becomes unforgettable.
Happy birthday Liberty. Wishing you
We had some little friends over today, including a darling 2-year-old named Carrie. As I was helping Carrie slip into her sparkly white sandals, Willa looked at me and said, "Mom, I want shoes." Now, Willa is nearly 17-months-old, and she is a Tillemann-Dick, so I was impressed but not flabbergasted with her short but grammatically correct utterance. And, since Willa has NEVER shown the SLIGHTEST interest in bipedal mobility (which, at nearly 17-months, is a bit crazy -- even for a Tillemann-Dick), it's true that I seldom put her in shoes of any sort. So, I told her as much. "Willa," I said, "when you start walking, I'll get you shoes." She looked at me with resignation, and replied with her standard, unenthusiastic "okaaaaaay."
Then, she stood up and took three, very deliberate, steps. Then she did it again.
So I ordered her some shoes.
****
In the car this afternoon, Hettie and I had the following conversation:
H: Mom, is Tom my uncle?
K: Nope. He's Mercina's boyfriend. Maybe they'll get married, and then he'd be your uncle.
H: So, you can just marry who you want to, as long as he's not your uncle or brother or cousin?
K: Well, it's a very important decision, so you have to think about it very carefully. But yes, you get to choose who you marry.
H: So, when I grow up and I'm an astronaut, I can marry Tom? If Mercina doesn't marry him first?
K: Ummmmm...
H: How long is Mercina going to be in Canada?
****
Also, I know it's not really responsible, but I kind of hope Phineas becomes a dancer.
When I was a kid, my mom used to go down to the Economy Market. It was a small, family owned Greek specialty store in Denver. I liked this for a few reasons. The first was I knew it meant Mom was making Greek food soon and I still haven't met someone who does it better. Secondly, when we went, Mom would usually get me a little honey sesame brittle which remains one of my very favorite candies. Finally, there was the feta. Glistening white and with it's distinctive vomitous smell, there was something about it that I found irresistible. When we had it, the kitchen's major draw wasn't cookies or ice cream; it was that amazing, salty cheese. I would eat it by the chunk. Mom liked it because she thought the name implied it was cheap. In fact, Economia was the family name, so there wasn't really a price cut. But that feta was unforgettable. With that story, I give you two salads for the end of summer that make use of the wonderful, pungent cheese. It's the perfect accouterments for the sweet September harvests that are coming in. The first is a classic New American mix of old and new world ingredients. The second is a Mediterranean salad I first enjoyed at my grandparents
in Budapest. This one has a twist in presentation. The dishes are fast, beautiful and delicious. Serve them alone or on top of crusty bread as a delicious bruchetta.
Corn Salad
4 ears sweet corn, shucked and raw
1/2 lb fresh tomatoes
1 cup arugula
1/2 cup crumbled feta
Cut fresh corn kernels off of the cob and place in medium sized bowl. Slice tomatoes into bite sized chunks. Toss with corn and Feta. Add arugula and toss. Serve immediately. Should keep for 3 to three days.
Medeterrenian Salad
Watermelon
Honeydew
Cantaloupe
Red Onion
Basil
Feta
Olive Oil
Sea Salt
Slice red onion and soak in warm water. Slice melons and feta in wedges. Alternate mellons and red onions on a plate, allowing one wedge of feta per 3 pieces of melon. Chiffonade basil and sprinkle over salad. Drizzle with olive oil and finish with a pinch of sea salt.
What are your favorite end of summer treats?