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.

Intersecting realities

It has been a long time since I had a good summer.   Several years, at least.  The last few years, I have said, “This summer has to be good, to make up for last year.”  They never were, though. 
Part of it is the heat.  I like the idea of summer, but the reality is that the soaring temperatures put me into a constant state of reactivity.  Part of it is history.  My cousin hanged himself in July of 2011.  It was a month I will never forget.  Whenever the air gets sticky, I think of him in his hospital bed, and me waiting for him to die.  In order to overcome the general physical difficulties and emotional entanglements of those sweltering weeks, the fun I have can’t just be good, it has to be fantastic.  So the bar set for summer fun is quite high. 
I was in the hospital when the weather started to turn warm this year, and I wanted to be happy that summer was coming, but instead I steeled myself for months of regret.  I always want so badly to enjoy it, but I inevitably find myself wishing it were over.
This summer has had a very surreal quality to it.  My health has been quite terrible.  I have been nauseous and bloated and bleeding and exhausted.  I have needed a lot of rescue meds, a lot of Epipens, a lot of IV fluids and push meds.  My aunt died very young after a brief, severe illness.  Someone very close to me stole from me.  My lows have been low this summer, to be sure. 
But I went back to Seattle this summer, and that trip was the truest expression of magic I have ever encountered.  We really caught lightning in a bottle for those five days.  The entire experience was otherworldly, in a way that I can’t properly articulate.  It was a beacon of love that I badly needed. 
And my cousin got married this summer, and being around people who love each other so much is inherently healing.  I will never forget how happy I was that day.  I am so grateful to have been a part of it, and as hard as it was on my body, it did wonders for my soul.
This past Wednesday, I went to a water park with two of my oldest, dearest friends, who are brother and sister.  We have known each other since September of 1988, when I met him at Catholic school kindergarten.  It was very, very hot and humid last Wednesday.  The combination of heat and sunlight is potent.   I took a lot of premeds and still felt sick for a good part of the day.  I was worried about my PICC line getting wet, under its Drypro cover. 
Late in the afternoon, we waded into the wave pool and for the first time in a year, I swam underwater.  Slipping under the surface washed all of the worry and fear away.  It was rejuvenating and wonderful.  I treaded water as the waves came and surrendered as they crashed around me.
When summer ends, I usually find myself mourning.   I would focus on the things I couldn’t do or the bad things that happened, all the ways summer had wronged me.  It is so easy to tally all the ways my body and the world failed me.  I would mourn the fact that it wasn’t better, and that once it ends, there is no chance that it will improve.  Those summers are permanently marred in my memory. 
This summer was different.  I found my soul again.  It feels very much like I pushed my hand through the veil that separates the worlds and found that sometimes I am living in all of them at once.  It feels like this reality briefly intersected with realities where I am strong and healthy, and I unknowingly walked through all the places where they met.  This living in several worlds at once is confusing and painful, but it is also empowering and truly magical.  I think it’s the only way to be. 
This year I’m not sad because my summer was miserable.  This year I’m sad because this summer was heartbreakingly beautiful, and like everything else in life, it ended much too soon.

The danger of travelling

My life has gotten to be a lot of work in the last couple of years.  My chronic tendency toward dehydration via third spacing means that I’m at high risk for repeat bowel obstructions.  I anaphylax a lot, sometimes without a trigger.  I have a colostomy.  I am pretty much guaranteed to have a variety of medical supplies, syringes, IV meds, epipens and alcohol swabs on me at all times.  I finally have a reason to have a huge purse. 

I am good at advocating for myself and getting my needs met, in all venues of my life.  I knew that travelling would exercise those skills, but I honestly didn’t worry about it very much.  I am very, very familiar with FAA and TSA regulations and how they apply to someone travelling with a chronic illness/ medical device/ lots of medication.  The bottom line is that they are required to accommodate you provided you have the appropriate documentation.  Which I have.  In spades.
I called my airline last month and explained that I had mast cell disease and required several accommodations.  These accommodations included a wheelchair from ticketing to the gate, gate checking my larger suitcase (which also contained medical supplies), boarding early so that I could administer IV meds and set up my infusion, and that I needed to infuse for the duration of the flight.  The person I spoke with was extremely helpful.  She asked some questions about my infusion pump and the volumes and types of medications I would be bringing.  She asked that I bring a letter from my treating physician stating that these medications needed to be with me while travelling and that I needed to infuse for the duration of the flight.  No problem.
I arrived at Logan Airport and had a very painless experience.  They opened up all my bags and swabbed my hands and my meds for explosives. They patted me down.  They were very courteous and helpful.  When it came time to board, I was the first one on the plane and was happily infusing fluids when we took off.  It was really easy.
Then I arrived a week later for my return flight and it was a mess.   It made me really mad, especially in light of my previous positive experience.
The first problem was with gate checking my bag.  I explained to the agent that it had medical supplies and she tagged it appropriately and said it was all set.  Then another agent came up to me and told me that I couldn’t gate check my bag because it was too big.  I told her it contained medical supplies.  She argued with me.  After about two minutes, I told her again that it contained medical supplies.  “Oh, well you didn’t tell me that!” she exclaimed, rolling her eyes.  Whatever, lady.  Gate check my bag.
I got on the plane and pulled out my stuff to give IV meds.  A flight attendant came over and told me to put my backpack containing my infusion pump and meds under the seat.  I told her that I couldn’t because it was going to be attached to my body and I didn’t want there to be tension on the IV line.  I told her that I had spoken with the airline and that the infusion pump/meds are not considered luggage and can be with the passenger in their seat.  “The FAA isn’t going to let you do that,” she said.  I explained that I had infused on the flight from Boston to Seattle.  I offered her documentation and she talked over me.  “Well, you can let me know when you’re done and we’ll take off then,” she told me.  “It’s an eight hour infusion,” I told her.  She shrugged and walked away. 
A few minutes later she came back and told me that “the FAA sees things like this in black and white, and [I] can’t expect them to see things in grey because of people like [me.]”  I didn’t reply and she said, “I’m trying to be sensitive here.”  I do not think that word means what she thinks it means.
So I didn’t start infusing until I was flying.  This is important to the story.  When I started infusing, I noticed there were a lot of bubbles in the PICC line extension.  I realized that the extension was cracked and air was getting into the line.  This is very bad.  I stopped the infusion and had to trouble shoot the situation at 30,000 feet where I couldn’t just call my IV service and ask.  The fact that I couldn’t start infusing while on the ground turned a manageable situation into something very scary. 
While I was trying to identify the best course of action, the lady came over and asked if I felt okay.  I told her that I feel like I always feel.  “Do you need help?” she asked pointedly.  I just looked away.  Her behavior was making me mad, which was causing me to react while I was managing this situation.  I was really not amused.
I ended up disconnecting my extension and connecting the infusion directly to the PICC line without a clave to keep the end of my PICC line sterile.  This required some changing of hardware in the obviously less than sterile environment of an airplane.  I kept the clamps on the line and did not infuse fluids, which guarantees me a bowel obstruction in the next day or two, which guarantees me anaphylaxis.  I bought Wifi and messaged all of my PICC knowledgable friends because I didn’t know what else to do.
I’m now going to have to have a conversation with my doctor about this in the morning and the line will almost certainly be pulled and a new line put in because of infection concerns.  After I had to have IV meds administered to me by my friend (since I can’t access my PICC line without an extension), I put the cap directly on the line.  It is unusable until I get someone to come out to my apartment and fix it.  Thanks, airline lady!  I was so hoping to have more surgery this summer.  I also really enjoy having a line for emergency meds that I can’t use. 

The really unfortunate part of travelling while you’re sick is that it doesn’t matter if you know your rights if everyone else doesn’t know them too.  This woman’s behavior put me in danger.  It remains to be seen if I get a central line infection, but at the very least, she made it a serious possibility.  I am going to get a bowel obstruction because of this situation, which is massively painful and causes anaphylaxis.  This is unacceptable.  I don’t want this experience for anyone else. 

I am reaching out to the airline and hope they will do something about this.  I will keep you all posted.

Story within a story

One of my favorite stories is Frankenstein.  I have probably read it hundreds of times.  I first read it in high school and really didn’t like it.  I revisited it in college when taking a Horror Story class and had a completely different experience.  I suppose I grew into it. 

One of the most interesting aspects of Frankenstein is that it is a story within a story within a story.  It is Victor Frankenstein telling a story to an explorer, who then tells the story to his sister via letters.  It contains the horror, reminds you that this is not happening in real time, but is instead being recounted later.  It makes it less frightening to know that he survived. 

I think of my own life in this same way.  It is less frightening because I know I have survived this long.  It is less frightening if I can build frames around the hard times. 
In 2012, I flew 2200 miles to Seattle and found out while I was there that my colon was no longer functioning.  Then I had these two years of endless struggle to stay one step ahead of my disease.  I had surgery and anaphylaxis and so much medication.  The stakes got higher and higher.  If it was bad, it was very bad, and if it wasn’t bad, it was amazing. 
Last week, I went back to Seattle.  It involved a lot of complicated logistics and hefty doses of antihistamines and steroids.  I was exhausted and sore and I threw up in an ice cream shop.  And it was amazing.  It was amazing.  We had pie and beautiful weather and lounge dancing and pretty dresses and conversation with this wonderfully eccentric woman who I hope to be like when I am older.  I got to live an alternate reality in which I was roommates with two of my dearest friends in Portland, Oregon.  I drank alcohol and played several games of pinball and inhabited this Seattle counterculture for a few days.  I stayed up very late and needed a nap every day.  I had some issues with my PICC line and had some help changing my dressing and administering my IV meds from my best friend.  It was, basically, an accurate representation of my life, if my life were more opulent.
The stakes for this trip were very, very high.  The risk for damage, physical and psychological, when you are sick, is very real.  Every loss, every limitation is magnified.  If this trip didn’t go well, I was probably not going to do any serious travelling in the future. 

On my first morning in Seattle, I got a text from a friend saying, “I’m so glad you’re travelling again!”  And I thought, “That’s right, I’m somebody who travels.” It was like a knot unravelled inside of me and returned this part of me to my soul.
I appreciate symmetry, in literature and in life.  I like framing things so that they have a beginning and an end.  Two years ago I went to Seattle and started myself down this road, and tonight I came back from Seattle, and it’s over.  My disease isn’t over and my life isn’t over, but that period is over.  This whole trip was powerful.  It made me feel powerful.  As my plane touched down tonight, I felt transcendent.  It feels like I transcended, and now I can move on.
In its simplest form, when you look past all of these frames, my story is about a girl, who loves some people and is trying to have a good life.  I am not sick or brave or special.  I am just ordinary.  I realized on this trip that the reason these last few years have been so difficult is because it was hard to find my real story outside of my disease.  It is hard to remember who I am when nobody else can remember either.
I am not my disease.  I am just me. 
Thank you, Seattle.