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.

 

 

The Cathedral of Belief

I have a GI bleed. This isn’t new or surprising, I have had bleeds off and on for years. But this is worse. Worse enough that I called to ask at what point I should go to the hospital. After some back and forth, we decided I could stay home as long as it wasn’t enough blood loss to significantly drop my BP or to alarm me personally. So home is where I am.

After approximately 4,679 phone calls and emails, a scope was scheduled for me for this week. Similarly, I have previously had 4,679 scopes. I am a frequent user of hyperbole but I honestly can no longer remember how many scopes I have had. I have had several flexible sigmoidoscopies, several full colonoscopies, a few proctoscopies, several endoscopies and the very rare and elusive colonoscopies via stoma. It’s like my own demented version of Pokemon Go except they don’t happen outside and I have to drink two bottles of what smells like lemon Pledge and I never wanted to catch them all and it’s all bullshit.

Despite the general terribleness of my GI tract, which is, as a general rule, quite terrible, things are improving. I’m not sleeping all day. I am getting back into a rhythm of sleeping at night. My cousin found me a protein shake mix that I can drink safely and which tastes good instead of the least bad. I’m not bruising everywhere and haven’t had blistering hives for a while. I have gained back a few pounds which is a good sign.

I also finally feel like I have my mind back. For me, it has never felt that my actions were what anchored me to my place in the world. It is my thoughts that ground me. We are never more wholly ourselves than when we are in the labyrinth of our own thoughts. We are what we think because what we think turns into what we believe.

Belief is a powerful thing. Maybe the most powerful. It is that ether that makes us more than our bodies and that holds us together when those bodies fail us. Believing strongly in a choice you make confers upon you the ability to make the most of that choice. The power of the words swirling around your mind cast a magic upon it that makes that path stronger and you stronger for being on it. It makes it easier to be grateful and to be happy.

I struggle a lot with my personal outlook and how I portray my life to others. Specifically, I struggle with being happy and what that means for me. I am happy, often. But there’s a guilt there, that I know my experience is sometimes dissected and applied to other rare disease patients for whom this may not be their reality. I don’t want people to think this life is easy just because I’m happy. And there’s an anger there too, that I shouldn’t be happy when I am frequently so sick and my friends are so sick or the existence of rare disease patients is so very precarious. There is a sharp side to this happiness.

What if I had chosen this life? What if I had somehow chosen to have these diseases and the broken elegance of this struggling body and everything else that came with it? Would believing in that choice have given me the strength to feel happy without this internal conflict?

I didn’t choose this life. But recognizing that it is still a good life is a choice, too. A powerful one. Maybe the most powerful.

Good times

I am not good at giving myself advice. If someone told me what symptoms they had and asked what the likely cause was, I could answer confidently. But when I have the same symptoms, it is hard to get past the anxiety to the answer. I am pretty much bracing myself for the worst possible scenario 100% of the time. These situations almost never play out the way they do in my head but that doesn’t stop my brain from populating my mind with ridiculous outcomes.

I basically live in constant fear of getting a line infection. The idea of the infection and not having a central line terrifies me. The port affords me a lot of autonomy and allows me to work, travel, and not be in the hospital once a week.

I can and do access my port if the need arises but I prefer not to do it myself. If there is anyone else who could possibly do it for me, I will aggressively pursue that option. But if I’m traveling, I do my accesses and dressing changes myself. Every time, my hands shake as soon as I put sterile gloves on. I don’t know why I’m so nervous or what I think is going to happen. If I miss, I can just do it again. I am a maniac about not contaminating things so if I think there’s even a chance something was contaminated, I just start over with new supplies. But I still get scared and you can’t reason with a fear like this.

I went to Ogunquit in July for a beach weekend with my sister, our cousin and some friends. I deaccessed my port to go swimming and reaccessed it later that day. Late that night, I caught my reflection in the bathroom mirror and realized my site was red. I flush on my chest most days so it can be hard to tell what exactly is happening. There were two curved red lines emanating from one spot about an inch from the site.

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Before I could even think about it, I was panicked. It was 2am and everyone was asleep. I was an hour and a half from my hospital and I didn’t drive my car up.  I would have to wake up my sister, pack, and drive home to Boston in the middle of the night to get to my hospital. I went outside and paged the covering for my infusion nurse while I obsessed looked at the lines to see how fast they were moving. I was very sure that I had a staph infection that I got that day while accessing. Except infections don’t show that type of reaction in a few hours time.  The two bright red lines couldn’t be staph marching toward my heart because ports are tunneled lines and there were no blood vessels there for the staph follow.

The nurse called and told me that it could be the betadine reacting with the mineral content of the water or that I may not have gotten all the sunblock off my chest before accessing. She told me to mark the ends of the lines and I could deal with it in the morning provided I had no other serious symptoms. I woke up the following morning and the lines were gone.

I went to the dentist last week. The tooth next to the Danger Tooth that was removed in March has been hurting when I eat or drink certain things. It also has damage at the gumline from vomiting like the Danger Tooth did. At this point, I’m basically out of teeth that we can just remove. My wisdom and most of my molars have all been pulled. So I fully expected the dentist to give me a long involved spiel about a root canal or a crown or an implant or something.  I thought about the fact that I would have to stop drinking coke because the tooth was in bad shape. Being as I have no vices left, a can of coke is how I indulge. I was prepared for a several weeks long struggle to get my tooth repaired like it did in the spring. I was ready.

“Your teeth look great!” the dentist chirped. “They are so clean!” I have one tiny cavity at the gumline in the tooth next to the Danger Tooth. They can fill it normally. Otherwise my teeth were great.

I strutted out of that office like a triumphant man walking through town in a movie montage. I couldn’t believe it. I was so sure that the tooth would be crumbling and I would never be able to drink anything but water and so on. I was pretty convinced. Instead, it was a perfectly routine visit with a positive outcome.

When I went to Water Country, I used IM Benadryl. Every time I have to use IM Benadryl, I get nervous thinking about how sore and bruised my leg will be.  I have to talk myself into it every time because it gives me anxiety. For the first time ever, I somehow managed to inject the Benadryl in a way that did not result in a huge bruised knot. I don’t know how I did it and I’ll probably never be able to do it again.

We have skunks in Boston and they are out in full force this time of year. Before taking the dogs for a walk or letting them out in the yard, I go out and make sure there aren’t any skunks. Astoria already got sprayed earlier this summer and deskunking my dog at 2am in my mother’s backyard is not an activity I enjoy.

One night last week, I took Astoria out before bed. I had gone out before and checked for skunks before bringing her out. As I was reaching to unlatch the gate, I realized there was a skunk about a foot away from me. I turned to run away from it but Astoria was next to me and I tripped over her. I somehow managed to stay on my feet for about fifteen feet while running at full tilt before finally crashing to the ground on my concrete patio. I hit the ground pretty hard. I managed to open wounds on my left ankle, both knees, both hands, and left elbow. I have a spectacular bruise on my left hip extending down the bruise.

Falling down hurts a lot more than it did ten years ago so I just lay there for a minute. Astoria lay down next to me because she seemed to think this was a bonding exercise. In the split second when I landed on my elbow, my brain decided that I had broken my arm again. I have broken that arm before, twice. Without any evidence at all that anything was seriously wrong with the elbow, my mind had populated a dystopic future for me and my broken arm. I was pretty banged up but there were no serious injuries. I had foreseen the next six weeks of my life dealing with a broken elbow and I basically had a bad scrape that bled. Catastrophizing at its best.

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In case you are wondering, Astoria did not attack the skunk (a fact that shocks me). When I sat up, the skunk was still standing in the same spot. It had sprayed a tiny bit, so little that it didn’t hit me or Astoria. After a few seconds of staring at me, it turned around and left. I cannot believe we didn’t get sprayed.

People with serious health issues spend a lot of time assuming crash positions and bracing for the pain. We are frequently met with resistance and spend a lot of time having the same conversation with ten people who still don’t rectify the issue.  I am always afraid that today will be the day that something truly awful happens.

But it usually doesn’t. I am learning how to live here, in this space where sometimes things work out.

Derivative

I am not easily intimidated. I have been sick a long time. I am used to being around hospitals, doctors and sick people. I am used to reading lab work and pathology reports. I have seen a lot of people pull out of medical crises. I have seen my intestine attached to the outside of my body, emptied colostomy bags, packed my own incisions, accessed my own port. It takes a lot to scare me.

Waking up with a fever of 103.2 two days after dental work scared the shit out of me. It’s kind of funny in hindsight in a morbid way: infectious diseases microbiologist develops tests for bloodstream infections, gets bloodstream infection. But it wasn’t funny then. I am very even when I speak to providers who don’t know me because my life could literally depend on it. I was even that day, but it took a lot of effort.

I was discharged after a few days of antibiotics and continued them at home for another week. I called out of work, a rare instance of sick time rather than working from home, because I was so exhausted and winded that it was difficult to do anything. In 2014, when the shit really hit the fan, standing up was enough to make me sweat, my heart race and blood pressure drop. It felt like that again. Like anything but being in bed was too physically demanding and being awake was too mentally demanding.

In the days after discharge, I lay in bed thinking about deconditioning and POTS and anaphylaxis and what if I had to start all over again? There isn’t a word for what I was experiencing. If we had a word for the crescendo to blind panic, the choking and the blood pounding before you scream, that might be it. What if I got these nine months of improvement and this was it?

The first few days back at work were very hard, my blood pressure was low and my mouth still hurt a lot. I had appointments last week at the hospital and one of my doctors is pretty convinced that I had a true bloodstream infection that just didn’t culture because of the antibiotics. I slept most of this weekend. But things are coming back together.

This past year, it was easy to settle back into a routine, to prioritize certain things over the things I had always dreamt of pursuing. It feels foolish now to have done that. I cannot take for granted that the way I have felt is the way I will continue to feel. If I hadn’t been on antibiotics since the dental procedure, this story could have ended very differently, with my port being pulled and time in the ICU to treat a bloodstream infection and anaphylaxis and months of recovery.

Life is short. All important things are derivative of this. Every lesson is secretly the same.

Ill fit

I haven’t been posting as much of my personal writing because I am working through a lot of things.  It is hard to think about and hard to write about.  2015 was an incredible and powerful year for me, in both good and bad ways.  It seems impossible that all of the events of 2015 are bound together by time.  It was exhilarating and triumphant and horrifying and so, so costly.

I am very good at minimizing and compartmentalizing, especially when it comes to my own health.  My health care is like business for me.  The actual process of managing my physical health is stressful and difficult but it has never been the hardest part of this experience.  That hardest part is all the things I feel like I lost. No amount of struggle can force those into discrete pieces to be boxed up and pushed aside.

The loss of those things hurts more now that I am more stable and things are less emergent. I am no longer living in one continuous crisis. It has given me some distance to reflect on my life and my health and all these plans I used to have.  I used to write about them every night before I went to bed, quick notes on moving toward a goal or long essays on all the things I wanted to do.  Then I went to sleep one night and woke up the next day and none of those things ever happened and I stopped trying to make them.

I think a lot about the life I used to have.  But for the years in between, it is, in many ways, not terribly different from the life I have now.  Every day, it feels more and more like I was never the person who wrote those journal entries.  I remember her, but that’s not the same as being her.  I don’t even know when she left.  A new season, then two, and suddenly it has been seven years since that girl even existed.

I’m trying to pick up these pieces she left and recraft these dreams, to remember the way they made me feel.  I am trying to fit into the space I occupied before I got sick and I just don’t anymore. It’s like forcing something into a place it doesn’t belong, hitting it hard with the flat of your hand until it splinters and your hand hurts.  Anything can fit if you hit it hard enough, but it will never be whole again.

February 29 was Rare Disease Day.  I wanted to write something positive because I’m a very positive person and because I am hopeful and I want people to be hopeful, too. But the truth is that every sick person has been traumatized by their disease and there will always be days or hours or moments when they feel that keenly.  We can overcome and live good lives but this history follows closely and it takes very little to run your mind over it.  Sometimes it is hard to get out from under that.

I thought all day about a story that could make people understand what it means to have a rare disease, to see what I see, but I don’t think that story exists.   There is no rare disease story, just like there is no systemic mastocytosis story, or Ehlers Danlos story.

There is only my story. So that’s the one I’m telling.

Achilles

When Achilles was an infant, his mother was told that he would die young.  She carried him to the River Styx, the dark water that separated Earth from the Underworld, and dipped him in its waters to make him impervious to harm.  Achilles grew up without fear of injury until a poison arrow landed in his heel, where his mother had held onto him many years before.  He died and became a warning – there is always a weakness, no matter how strong something seems.

I have an Achilles’ heel, and it is airports.

Since July 2014, I have travelled by plane to the following places: Seattle, Colorado, Orlando, Los Angeles, Hong Kong, Beijing, and Colorado again.  I talked to lots of people who are more intrepid travelers than I am and got their advice.  I talked to my doctors.  I got all the paperwork and all the notes. I organized everything and made sure I had enough meds, port supplies, ostomy supplies and safe foods in case we got diverted or delayed or cancelled.   I called the airline the day after booking tickets several weeks before travel.  They were always very courteous and attentive and assured me I would not have any trouble.

The problem happens at the airport.  Specifically, it happens at the check-in counter.  I always ask for a wheelchair to meet me at the counter because while I am certainly much more stable than I was a year ago, standing up, especially in one place, pulling heavy things, is not my strong suit.  So I get to the counter and identify myself and ask for the wheelchair.  Then, while we are waiting for the wheelchair to come, it happens.

They tell me I can’t bring on my two luggage containers of medical supplies and insist that they will make me gate check one, and also that my bag holding my infusion pump and medication WHICH IS ON AND ATTACHED TO MY BODY counts as my personal item and has to be stowed overhead.  So I can only take half of my medical supplies and the bag with a line pumping medication to my body has to go in an overhead bin that will close on the line.  And so it begins.

The last eight flights I have taken were with Popular American Airline That I’m Sure You Can Guess.  I like Popular American Airline for a few reasons: their seats are bigger, they understand that I have a legitimate need to have more space (to juggle IV meds), they eventually agree that it is impossible for me to stow my pump because it is attached to my body, and they have movies and Wifi.  I pay more to travel with Popular American Airline because once I am on the plane, I generally don’t have huge problems.  I expect to get questions, I expect for people to not know things, that’s fine.  But once we have a brief exchange, they agree that what I was told by their disability services people is accurate and I have a pleasant flight.

That is not the case with the people at the check-in counter.

I have been told many tales by the people at the check-in counter: that I cannot bring all of my necessary medical supplies onboard (which is not true); that I can only bring one medium sized piece of luggage with supplies; that I have to bring multiple small pieces of luggage with supplies; that I can bring one small piece of luggage and then the rest have to be in “compressible” bags; that I can bring one small piece of luggage and it has to meet the weight limit; that I can bring one small piece of luggage and it doesn’t have to meet the weight limit; and so on.  So I never really know what I’m going to get, and calling ahead of time never helps.  I get a different answer depending on who is behind the counter.  They eventually call a supervisor, and then the supervisor tells me whatever they happen to think, which is also inconsistent.  It’s always a nightmare, and for the last several flights, I have literally started crying within fifteen minutes of being at the airport.

No amount of preparation or education helps.  Popular American Airline will not give me a letter explaining what I can bring that I can show at the counter.  They cannot “keep notes about me” so that they have a copy of my fit to fly letter on file.  They will not put in writing that I can use the pump.  Best of all, everytime this happens, they send me an email that says that they are sorry that I did not have a good experience but that they “respectfully deny” that they violated any regulations.  I don’t call them everytime this happens because I know they don’t care.  They just automatically send me an email that is basically an enormous fuck you.

What I find really funny about this situation is that sometimes, the people at the check-in counter will tell me that the reason I can’t talk those supplies with me is because TSA won’t let me.  TSA is much maligned and I have to tell you that I have not had a bad experience with TSA since I started travelling again in July 2014.  They know what PICC lines, ostomies and ports are. They are courteous and efficient. I plan to get patted down and have my bags opened and my things and my person swabbed for explosives because these people are trying to make sure no one blows up airplanes and I am carrying large amounts of liquids, glass vials, syringes, needles, adhesives, medication bottles, an endless amount of pills, a clicking infusion pump, packets of cromolyn and a partridge in a pear tree (sung).  They are always very careful to be sure they don’t contaminate any of my line supplies or medications.  TSA is not the problem here.

So I get all excited to go on these trips and see people and do things and I premedicate and call and call and jump through all the hoops and then I get to the airport and within minutes, I am so frustrated that I am crying.  And then that’s it, I’m the girl who cries at the airport and you can never un-be that girl.  And it has gotten so bad that it makes me not want to travel.

In my heart, I have always been a traveler.  I have always wanted to get on airplanes and go places and see new things, even mundane things, even by myself.  Before I got sick, I would board planes with my iPod or Discman (I know, I’m dating myself here) and a small journal to write in.  I would write and listen to music while looking out the window.  I didn’t just like being in different places.  I actually loved the change of the environment, the little lights below at night, the reddening of the sky as the plane chased daylight.  I was a good traveler.

Being at the airport now is a reminder that my experience in the before matters very little.  It doesn’t matter that I used to be a good traveler, because now I’m just a crying woman who needs a wheelchair and wants to bring too much luggage onboard.  I have had some incredible, life changing victories in the last two years, but it has been hard won.  It takes such a toll on me, both physically and emotionally.

Last week, I went to visit one of my best friends in Colorado (hi, Priscilla!!!!).  I stayed for four days, which is pretty short for me, but I couldn’t take more time away from work right now.  We stayed over in Denver, hung out at her place in Summit County, went to Garden of the Gods and drove back to her place through mountain backroads.  I have been to Colorado ten times in the last nine years, and that drive home was the most stunningly beautiful landscape I have ever seen.  Purple mountains, blue skies, unblemished snow fields, no clouds.  So beautiful it feels like I am different for having seen it.

The day I flew home was one of the longest days of my adult life.  They right away started with you can’t take all this stuff on the plane, then there was a mechanical issue with the plane after we had boarded and we all had to get off and then they cancelled the flight.  One of the gate agents really put her ass into making sure I could get home that day and I got a seat on a direct flight with another airline that night.  By the time I got home, I was really in bad shape.  I literally couldn’t stand for more than a minute or so at a time.  Bad.

I want to be a traveler again like I used to be and my Achilles’ heel is airports and I’m so fucking sick of this shit.

 

River stones

The day I was diagnosed, I left the hospital holding a piece of scrap paper with notes all over it. I occasionally come across it again while looking for reports in my massive collection of medical documentation. The paper is soft along the folds, but the ink is still bright. Words jotted down haphazardly surround a crude drawing of a mast cell heavy with granules. Words to explain my disease and its accompanied wreckage.

These words meant more than too many mast cells, too much activation. They meant the pain and stress of being sick. They meant all the things I had lost. They meant fear and loneliness. They meant desperation and need for validation. They meant that this was real and that meant that it wouldn’t go away. The words were arbitrary. They had no power on their own. They had power because of what they represented in my mind.

In the weeks that followed diagnosis, I said the words out loud when I was home alone. I turned them over in my mouth until the edges were smoothed, the jaggedness smoothed like a river stone.

I arrived in Beijing on Tuesday afternoon. It was cold and raw there, the kind that makes every movement feel heavy and dully painful. The city was overlaid with soft fog, fluffy and moist. It looked sleepy. Our wonderful tour guide apologized for the poor visibility but I liked it, this ethereal dressing. In fairy tales, that’s where magic happens.

On Thursday morning, we went to the Mutianyu portion of the Great Wall. We walked up to a cable car that delivered us into the heavy mountain fog. We made a short climb up slick stone steps to reach the wall, visible only in glimpses through this wet cover.

The shrouding was so complete that I could almost believe that if I stepped off the wall into the fog, I just might disappear. We were high above the world. We were in the sky.

There was a sharpness to walking through the mist in this place that had borne witness to eons of man. I can’t find the right words to express how it felt to walk along the Great Wall. If let down was a positive feeling, it might feel like that. I was awestruck by this experience. It could not have been more amazing for me. It feels like putting down something I carried for so long that my body began to accept it as its own. It is the knowledge that after so long, I will never again see the Great Wall for the first time because I already did.

I saw the Great Wall after years of doubting I would see it at all. I did this impossible thing. I wanted to cry tears laden with the salt of all the impossible things I had hoped for in that place where it seemed the very mountains were crying, too. Hope is the only way forward, but it can be so, so heavy.

Our tour guide explained the function of the Wall, its amazing length and structure. It was designed to prevent invaders from returning, watchtowers manned with sentries. It surprised me that the mountains themselves weren’t enough protection without the wall. I’m not sure that the wall was ever any better than the mountains alone. But the people believed it did and that made them better. Maybe it gave them hope.

A lot has changed since I was diagnosed. The words I smooth are different now. They are still painful. But if I think of the coolness of the stone, the feeling of another world encroaching, the realization that dreams come true, maybe when I say these words, they can mean that, too.

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Just before waking

For most of my life, I have seen things in that creeping inertia toward sleep. Figures made of vibrating inkiness would move towards me until I screamed and jumped in the moment before we touched. I would shake my head from side to side and rub my eyes like an incredulous cartoon character while my pounding heart slowed.

The shapes I saw never existed outside of that thin slip of time that bounded waking from sleep, but logic is not enough. It didn’t matter that I knew that these were hallucinations. The panic was real.

From the moment I decided to visit China, I was panicking. I fretted about bringing medications, transporting IV bags, getting medical notes, dealing with the airline, the weather. Everything was a variable I could not control. The mental invention I could muster to frame worst case scenarios was impressive. Every obstacle brought fresh waves of anxiety until I believed I may never get there. I worried and worried and worried.

By the day I was set to fly to China, my fear had reached fever pitch. What if the airline staff wouldn’t let me carry my supplies onboard? What if I need an epipen? What if my port clots off? What if I can’t reaccess my port? What if all my IV bags pop? What if I have a severe reaction during the sixteen hour flight?

I had actual nightmares that I would arrive in China to discover all of my medication bottles were empty. In the half slumber just before waking, vignettes of my illness destroying this trip paraded before my eyes.

Late on November 2, I went to Logan Airport with my new matching luggage and checked in for my flight to Hong Kong. As anticipated, there was some trouble with getting approval to bring my critical supplies and meds as my carry-on luggage. Lots of calling supervisors and discussions. At last, a supervisor walked over to us. In his hand was the printout summarizing my health conditions and necessary accommodations. I could bring this small piece of luggage onboard with me.

Things went much better from that point. A wheelchair was brought to transport me to the gate. TSA gave me no trouble. I boarded the plane first to get medicated and settled. A flight attendant came over, holding a copy of my medical approval form.

“It says you have ‘mas-to-cy-tro-sis’, this is right?” she asked warmly.

“Yes, that’s me,” I said, fighting with my infusion pump.

“This word does not mean anything to me. How can we help you during this flight?”

“I’m fine, I can handle everything myself.” And I was fine and I could handle everything myself. I manage my disease everyday. There was never anything to fear.

After we took off, I laid back and fell asleep for nine hours. I flew over the North Pole and landed in Hong Kong without any trouble.

I have been in Hong Kong for five days. I am very tired. I am very sore from the flight. I am reacting mildly. It is hot and hazy here, the air like droplets of lead weighing everything down. I can eat almost nothing that wasn’t prepared at the house and need to nap every afternoon on top of sleeping 10-12 hours a night.

But I am here. I made it to Asia. I have seen the Star Ferry and the Peak, the bustling central area and the sun blazing through the fog over the South China Sea.

The nightmare is not that I would be sick in China because I am sick and will always be sick and being in China won’t change that. The nightmare is that I would wait so long to be “healthy” that I would never experience the blinding joy of going to the other side of the world. The nightmare is that my disease would prevent me from living a life of wonder and meaning.

You don’t need a good reason to pursue your dreams. It doesn’t have to be logical or convenient. You don’t need a plan. You just need to decide that you want things to be different and believe that they can be.

In a season when it feels like I have lost so much, I can no longer be controlled by these nightmares. And even when I’m queasy and sore, I am happy in those quiet moments just before waking.

Great wall

I have always wanted to travel. From a young age, I was fascinated by language and traveling seemed an extension of that, places to hear foreign words and see strange alphabets. When I was 19, while sitting at my desk one night, it occurred to me that there was no reason I couldn’t just save up and go wherever I wanted to. I planned my first trip abroad and spent 26 days in Europe the following summer.

Traveling made me happy in a way that I have never been able to replicate in any other way. Over the next several years, I spent all my money on travel. I didn’t care if I ate the same thing every day or drove a junkbox. Nothing mattered to me like the joy of being in strange, faraway places. I started planning my magnum opus: a nine month trip around the world that took me through six continents. It was slated for January 2011.

In 2009, I lost a lot of my hearing. I spent all of the money I had saved for the trip on medical expenses, much in an effort to stop my rapid march towards deafness. I lost my hearing anyway. I haven’t travelled out of the US since 2010.

For a while, I went through the motions, even when I was clearly in no shape, financially or physically, to go anywhere. I bought guidebooks, priced flights and drew maps of places I hoped to visit. I printed out pictures of every country in the world and glued them to cardstock. I hung them in my apartment, passive encouragement that I would once again be strong enough to see some of them.

Then my health declined rapidly and I was in massive pain and puking constantly and unable to go to the bathroom. I stopped everything. I couldn’t fly anywhere anyway, so there was really no point. I couldn’t even think about it. I was so tired and the pain was so bad and I was scared. My illness was this huge wall around my life and I couldn’t even try to climb out. I could only hope not to be buried by it.

Last year, I decided that it was time to try again. I flew to Seattle with my best friend, emboldened by my ready IV access and growing restlessness. I took a few other domestic trips, Colorado, Florida, California. My health was mostly fine and when it wasn’t, I knew how to manage it with medication to stay safe. Every new trip gave me confidence that I could be independent in travel, provided I had a predetermined, safe place to stay and eat, and someone to help me if I got sick. The majority of my luggage was medication and medical supplies and I didn’t care.

In less than a month, I will be flying to Asia and fulfilling a lifelong dream of seeing the Great Wall of China. It has been logistically complicated, with medical notes and forms and notaries and translations and all the doctors. I will be taking a sixteen hour direct flight from Boston to Hong Kong, where I will spend some time with a dear friend before we travel to Beijing and then the Great Wall.

I feel it again. And even though I’m scared, I am happy.

Happiness is a kind of fighting. It is a way of saying that maybe today was miserable and so were a lot of yesterdays but maybe tomorrow will be different. It is the refusal to be subjugated by pain and fear and uncertainty. It is the memory of joy and the knowledge that even if you don’t believe it, you could again. It is the way memories catch light in your mind, a technicolor feeling that goes on forever. It is the only fight that matters.

Some things are best viewed not as they are, but in the light of a prior incarnation and the hope that it could reascend to this splendor once again. It took years, but I climbed out of the high walled prison of this disease and next month, on the other side of the world, I will put my hands on another Great Wall.

The only constant

Summer is over.  Maybe astronomically speaking it’s not, but it is.  When you close your eyes on August 31, warm windy days and bathing suits and beach towels and eating outside are all packed away by summer faeries and pushed to the back of the closet.  When you open your eyes on September 1, it is fall.

I had an amazing summer.  I could never have imagined that I would have a summer like this again.  I went swimming in the ocean and went to a water park and got sunburnt and walked around in the sunshine. I worked a lot and took the train and ate solid food and exercised.  I still have mast cell disease and it will never go away and no, my GI tract does not work well.  But I feel better in a lot of ways.  I feel better than I thought I would ever feel again.

Last week was a difficult week for me.  I have been pushing it the last few weeks, trying to do more than I probably should.  I started feeling gross again, burny hot skin, really bad nausea, more GI trouble than usual.  I started needing to sleep a lot longer.  It was so defeating.

I crawled into bed one day and lay awake, too tired to sleep, reliving the last several months.  I was scared.  I was scared that this was over.  I was scared that these three months were all I was going to get.  I was scared because it felt like I was finally living again and losing that would be too painful.  Because I was finally entertaining the thought that I could go back to school and travel and have fun without risking ending up in the hospital.

Last Friday, I realized I had a fever.  I was sick because I had a cold or something.  It hadn’t even crossed my mind that it was anything other than mast cell disease.  I slept most of this weekend and am getting better.

It only took a few days for my dreams to turn from school and travelling back to a stable accommodating job with good insurance.  You know.  My fall back dream.  The dream that I will retain the means to treat my myriad health issues and live independently in a clean, safe place.  That dream.  It sounds silly and narrow to people who have never been sick but let me tell you, it’s not silly to me.  Even when I am feeling better, even when I think I could do things I put aside long ago, even when I am embarrassed to admit it, this is my dream.  This is the dream that needs to come true for any other dream to be realized.

I like my life.  I have a great job.  I have an apartment I can afford in a convenient location.  I have a great support system.  I receive excellent health care.  I can walk my dogs at night.  I can pay my bills.  I am lucky.  I am so lucky.  And it feels wrong to risk losing all of these things to pursue another dream that could prevent me from getting the care I need.

So I push these thoughts aside and feel grateful for all that I have.  I focus on living the life I have now and try not to rock the boat.  I don’t make any changes.

There is this idea that by doing nothing, we can preserve our lives just the way they are.  That if we don’t change, we are guaranteeing the future provided by steadily travelling this same road.

It doesn’t work that way.  It never did.  Everything changes.  The only constant is you.

Yesterday I found out about some changes at work that will directly affect me and how I continue to do my job.  Maybe not in a bad way.  I went back to my desk and cried for a few minutes because I’m a crier and I get very attached to people.  Then I got up and got lunch and went back to work.  I was sad and anxious but also a little relieved and excited.

I don’t know the name of this feeling.  But I do know that I could choose to stay here in my little apartment with my job that I love close to my family and friends and doctors.  I could make that choice and it could all change anyway.

And I could make the choice to give all of this up and I could find myself without healthcare or money or a home.  Or I could find that I give it all up and succeed.

It feels like the stakes keep getting higher and higher.   But that doesn’t mean I shouldn’t try.