The perfect medicine

I do not have a metaphorical list of things to do in life. I have a literal, physical list. I started it when I was 15 years old. I remember the noise the pen made on the notebook paper. (It’s hard to remember that I was once able to hear such noises). I remember carefully tearing the pages along the perforated edges of my spiral notebook. I folded it up and tucked it inside my journal.

In its first iteration, the list had over 100 things on it. Some of them were emotional (“fall in love with someone who loves me back”), some academic (“get a doctorate”), some simple (“paint my bedroom purple”), some about specific skills (“learn how to shoot a bow and arrow”), and others about experiences (“see the pyramids at Giza”, “swim in all four oceans”). One of them was to go to a Mayan temple. It was specifically written as “Go to Chichen Itza or a Mayan temple site.”

In the years that have followed, I have done many of the things on my list. I also periodically add to it. There are some things I will never do because they were linked to a specific timepoint or situation I never found myself in. I don’t mind. The list is a map, not an itinerary. It is the compass pointing to the true north of my life. It doesn’t mind if I sail around the bottom of the world to get there.

I have been in Mexico since last Sunday. It has been a very challenging week. There were major problems with my reservations and transportation and the staff have been frustratingly rude about correcting their mistakes. I have had some misadventures with my port and that was scary. (Fortunately, I have been on antibiotics for several days now and the port does not seem to be infected.) It was not exactly the relaxing week I was hoping for but I don’t think I’ve had a relaxing week in years so at least it wasn’t unfamiliar.

Yesterday, I got to watch a very dear friend get married on a beautiful beach covered by a warm, sweet wind as the sun went down. I got to watch my sister officiate the wedding and we were all excited to think that the next wedding we all attend will be my sister’s wedding next April. And today, after almost 20 years, I went to Coba, a large Mayan temple complex an hour from the resort I am staying at.

I was so excited to be able to do this. I was also scared. My life is an exercise in adjusting expectations. I have been let down so many times by this failing vessel my soul occupies. I would be crushed if I travelled all this way and couldn’t get to Coba.

My heart has been broken so many times by this body and the life it has imposed upon me. So many times I have felt like tiny pieces of me have been chiseled away along the lines of all these tiny spiderwebbing fractures. And most days I can cope with that and most days I like my life. But this was too important to me and I felt so vulnerable and so exposed. I was really scared that I would come so close and somehow miss this opportunity.

The weather was not cooperative. It rained a spectacular amount today. It took much longer than expected to get there because we had to drive slowly. It was the kind of rain that laughs at umbrellas and boots and ponchos. We were all completely soaked in a matter of seconds. But we were there. For an hour and a half, my family and I sloshed through mud puddles and negotiated the additional slipperiness of steps worn smooth and uneven long ago. My sister and her fiance got bicycles to ride to the biggest temple. My mom and I took a rickshaw to meet them there.

And then suddenly, emerging through the dense lush green of the jungle, there it was. We turned a corner and despite the special futility that is seeing things through wet glasses, I could see it. The largest pyramid, the one I had seen in so many books. The one I saw in an encyclopedia in seventh grade and never forget.

Cardio exercise is hairy for me under the absolute best circumstances and I avoid it as fiercely as I avoid undercooked egg whites. But I had made it so far and couldn’t leave without trying. I pushed down my fear and started climbing. It was wet and slick and hot. I kept my eyes on the steps and climbed, one hand on the rope strung down from the top, the other on the steps. If I turned around, if I looked at how high I was, if I thought about how easy it would be to fall, I would never have made it. I kept my head down and kept my eyes on the step immediately in before me. I moved forward and I didn’t look back. And almost 20 years after writing the entry in my list of things to do, I climbed to the very top of a Mayan pyramid.

One of my sister’s best friends is Buddhist. She was also in Mexico this week for the wedding. Last night, we chatted about living a good life with chronic illness. (She is a diabetic.) She told me that one of the leaders of her sect of Buddhism believes that for everything that can ail the body, there is a perfect medicine to cure it. Nothing can be done that cannot be undone with something somewhere in this world. Maybe it takes forever to find it. Maybe we never find it. But it is there nonetheless, waiting for us.

Maybe all those crystal slivers of my heart that I have lost were not really lost but scattered. Maybe this is the perfect medicine. To cross things off my list, to go to these places. To live your dreams when you are never even sure you will live until tomorrow.

To believe things will get better and that your life is good. That this life has value and so do you.

To move forward. And don’t look back.

 

 

Postcards

I started collecting postcards when I was 14. My uncle died abruptly that year and I took a road trip with some relatives to visit his son several states away in Georgia. When we were getting ready to leave, my parents told me to send them a postcard. I spent an inordinate amount of time looking for (and not finding) postcards in every rest stop and 24 hour gas station between here and Savannah. I finally found some at a visitor’s center near Roanoke, VA. An obsession was born.

I have thousands of postcards now. I get a bunch anytime I travel anywhere, even if it’s somewhere I have been before. Even if I’m only passing through a state or country. Even if it’s just a layover. If I find out someone is going to a country I don’t have a postcard from, I am not shy about asking if they will grab me a few.

There was a long time when I was too sick to travel. I lost a lot of things in those years. Travel was one of the hardest. Planning trips had always been an escape for me, even if I were planning trips I knew I would never take. I would read guidebooks and research flights and destinations and places to stay. I would often take out my postcard collection and flip through them, a palpable connection to this piece of myself that had been removed by force.

My health stabilized in later years but there are still many places I will never see, places that are just too far flung to chance with my need for accessible medical care. I have tried hard to make peace with that. Some days are easier than others. It is still something I struggle with, a loss that remains raw even after so long.

In 2014, I flew to Seattle with my best friend to visit one of my other best friends. It was sort of a rematch. My previous trip to Seattle had suddenly turned into a clusterfuck when I suffered GI failure 3000 miles from home. So in 2014, I took myself and my PICC line and two pieces of luggage stuffed with meds and medical supplies to Seattle. And I made it there, and I made it through the trip, and I made it home. For the first time in a long time, I started to feel in control. Not really in control of my life or my body, but in control of something. Something I wanted badly, that was an essential part of me. The ability to travel.

In the year after Seattle, I honed my traveling with masto skills with some domestic trips. I went to Colorado, Florida, and California. In November 2015, after months of planning, I flew around the world and spent two weeks in Hong Kong and mainland China. It was exhausting and complicated and very stressful. But it was also amazing in a way that few things in my life have been. When I am having a super shitty day, I think back to the way I felt when I landed in Hong Kong. Or when I first saw the Great Wall of China rising before me as it emerged from an otherworldly fog. Or when I crossed the threshold into the Forbidden City. Just pure gratitude for being able to be there in that moment. And awe that I was able to figure out how to work around the incredible complexity of international travel with the need for daily IV meds, IV fluids, and ready access to emergency medical care.

I used to be adventurous in the more traditional sense. I wanted real adventure: hiking in the Himalayas, long boat rides down remote rivers, cliff diving, camping in Patagonia, watching the Northern Lights from a sleeping bag under the endless sky in Iceland. I will never be able to safely orchestrate many of these real adventures. But in a way, the disappointment of this is tempered by the fact that I have unwittingly uncovered a different type of adventure: learning how to game my body and my disease to let me take these bites out of the world.

This is my adventure. Figuring out how to fold my life up into complex origami shapes and walking along the edges, planting a foot in the space governed by my disease, the other in the space of exhilaration and dreams. I will never know the triumph of summiting Mt. Kilimanjaro. But so many people will never know the triumph of making it to another continent, of spending years to see a place you dreamt about, of eating and working and waking the morning after a day you thought would kill you.

I do not enjoy the experience of having mast cell disease. I like things about my life but this is real life and not a symbolism-ridden novel. If I could snap my fingers and find myself occupying a healthy body, I would do it in a heartbeat. Being sick amplifies everything but that means every good thing is amplified, too. Every time I am able to figure out how to experience something or go somewhere safely, it is such a victory. It is infinitely more satisfying than if I never had to worry about my health. And I think that’s worth something.

I’m flying to Mexico in a few days for the wedding of a family friend. I have never been to Mexico. I started preparing for this trip six weeks ago, started packing two weeks ago, and now it’s almost here. I am currently having an obnoxious episode of “normal people sick” (as distinguished from “masto sick” – I have a nasty cold). A few years ago, I would have been panicked that I wouldn’t recover in time to safely travel. But after all the work I have put into this trip, it just seems silly that something like a bad sore throat and wet chest cough could get in my way. It will be fine. My doctors have cleared me and I’m not concerned.

In three days, I will be in Mexico. In nine days, I will have seen Mayan ruins, swam in the Gulf, and warched my friends get married on the beach. And in ten days, I will be home. With postcards.