Flame

A few days ago, while I was walking my dog, I thought I saw my best friend’s father. He died two and a half years ago after a series of complicated health issues. I had known him for 25 years.

After not seeing him, I started thinking about the last time I saw him. It took me a while to remember when exactly that was. I thought of events we both attended, weddings, birthdays, and backyard fires on summer nights.

The last time I saw him wasn’t at an event. A few weeks before he died, I visited his daughter and walked upstairs to say hi to him and his wife before I left. It was painfully ordinary and completely unremarkable. Just another autumn day, only noteworthy in retrospect. I had no way of knowing that it was the last time I would see him.

I find myself wondering lately if today will be the last time I do something, some small thing that formed the rich backdrop of my life. I also find myself wondering how many things I did for the last time without realizing it. It’s so easy to do, such a slippery slope. One day, you’re tired and you want a break. Not a forever break, just a short break. So you decide that you won’t do these things today. Letting things go for one day is fine. And so you do. You let it go. You put it down and you never pick it back up again.

When was the last time I didn’t have abdominal pain? When I felt healthy? What were those days like? What did I feel? What animated the world around me? I can’t remember. Years from now, when I look back, I won’t remember this moment either, or the meaning of these words. I won’t even remember writing them. How can any of this matter so much when I won’t even remember?

Every patient has a line where they stand their ground to not lose anything else. Every patient decides that this position must be held for as long as possible and that once this line is crossed, you can never go back. This is how I feel about eating. This is my line. It’s not that I can’t live with a feeding tube or on IV nutrition. It’s not that I find either of these options particularly repulsive. I just want to be able to eat. Such a simple, primal thing.

I have always felt that I have this little light inside of me, really deep, beneath all the swollen and damaged places. It has been dimming for years now. I have been cupping my hands around this tiny flame to keep it alive. But I can’t keep out the wind forever. I am only one person. And I am so, so tired.

I am afraid that I am approaching the last of the days when I can eat. I am afraid that this little light will wink out and nothing will replace it.

Unto itself

It is hard to adjust to the idea of being sick. Not so much the daily activities of being sick but of identifying as sick and viewing the world through shaky, feverish lenses. But you do it because adaptation is instinctive. One day, you think, “I could get used to this.” And then you do.

It was harder for me to adjust to the idea of being very sick. Sick was manageable. Very sick is not. And I am very sick.

I took medical leave last fall. Things got out of control really fast. New complications stacked up quickly and crushed what control I still had. Every problem I ever had was worse than before and a whole bunch of new ones showed up. I slept in soaked sheets, shivering with fever dreams, waking shaky and foggy. I couldn’t keep food in the top of my GI tract and couldn’t get it out of the bottom. I took meds by the handful.

I have been sick like this before. The symptoms were different but the degree was the same. When I first applied for short term disability, I expected to return to work in six weeks. I have recovered before in shorter time. I thought if I could adjust my meds, add in some new ones, and get plenty of rest, that I could get back to baseline.

That’s not exactly what happened. Some things improved but my GI issues got worse. I suddenly had gastoparesis. I started having a lot of pain with eating, even things that were mast cell safe. I had epigastric pain on top of my normal abdominal and visceral pain. I have started having chest pains too from difficulty swallowing and food getting stuck in my esophagus. Things changed. My body changed. And my ability to handle it changed.

Around 11pm in Tuesday night, I was sitting on my couch, watching the end of a movie. I had had a completely unremarkable day. I ate normal safe food in normal safe amounts. I took my meds on time. I hadn’t done anything strenuous or upsetting.

As I was sitting there, my lower lip started to swell inside. Then my tongue. I’m not super prone to swelling and it’s not always part of my anaphylactic presentation. I went to the bathroom to inspect my mouth in the mirror. I wasn’t having any other symptoms so I swished some cromolyn and went back to my movie.

A few minutes later, my airway swelled. Things happened very quickly from that point. I was having trouble swallowing and I was producing a ton of saliva. My voice got raspy. I had hives all over my neck and chest and my blood pressure started dropping. I have epipens everywhere at home – next to my bed, on my bathroom vanity, on my desk, the kitchen table, my coffee table, my purse – and fortunately they were close enough for me to reach. I injected into my leg while on the phone with 911. My airway opened again and I used IV rescue meds while waiting for the ambulance to arrive. They transported me to the emergency department of the local hospital where I receive all my mast cell care.

I started rebounding about three hours later and needed a few more doses of IV rescue meds. I hung out overnight until I could talk to my doctors in the morning. I went home Wednesday.

I had an appointment with my mast cell GI specialist on Thursday. In news that shocks no one, my GI tract is pretty inflamed. It is swollen and so sore that even touching it causes reflexive guarding. (Reflexive guarding is when your abdominal muscles engage when you try to touch the abdominal organs because they are sore and inflamed.)

I am off food for a few weeks at least and am currently living on homemade rehydration solution and nutritional supplement drinks per my doctor’s instructions. (For mast cell patients in a similar scenario, I have ordered Orgain, which I have used in the past when I couldn’t eat. It is vegan, soy-free and organic. I have received excellent customer service from them in the past and they took my health issues very seriously. I generally try not to specifically endorse products but I think a lot of people in this scenario may be interested.) If this doesn’t calm things down, I will do elemental formula for a while, and then potentially TPN (IV nutrition).

Yesterday morning, I woke to a call from my disability caseworker “checking in” that I was going back to work on Monday. I didn’t laugh at her but it’s mostly because of how anxious these conversations make me. I informed her that I had been removed from my home on a stretcher less than two days before. I told her to call my mast cell specialist who agreed that I was looking at a months time table for returning to work, not weeks.

There was never a future for me that did not involve top to bottom GI failure. My GI tract is so dysfunctional from years of inflammation and damage that it has become a disease unto itself.

I knew this would happen. I just didn’t think it would be now.

Sick for a day

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.

Fragility

I have a bad tooth. It needs to come out. The original plan was to have it removed in an OR so I can get twilight sedation but my insurance doesn’t want to pay for it and I’m left with having to cobble a plan together myself. I called a number of oral surgeons and no one wants to give me anesthesia outside of an OR. So any kind of general anesthesia means OR, which means a several thousand dollar bill from my insurance. No dice.

I have had dental work with local anesthetic and it’s not ideal but it’s okay. I premed heavily and then it takes a day or two to squelch reactions. It’s not super comfortable but it’s not life threatening and fortunately my laundry list of past procedures means that I have got pain management down to a science. I called my doctor and he agreed that using local sedation is fine if I premedicate. He is very good at giving advice for procedures and talking to providers that aren’t familiar with me. Great. All systems are go.

I have been a patient at my current dental office for about half of my life. I call them and they schedule me to have my tooth removed. Around this time, my dental pain went from sucky and uncomfortable to my entire face and all my teeth hurt and the pain is making me nauseous. Then the long suffering secretary at the dental office calls me to tell me that the dentist won’t remove my tooth with local anesthesia. They also won’t fill the cavity to make it more comfortable until I can figure out how to get this removed.

I talked to the dentist at length and will spare you the gory details of our exchange. I now had to find someone who didn’t know me who would agree to remove this tooth with local anesthesia quickly because the pain was awful. My entire face hurts and I’m reacting and it’s painful to talk, eat and be alive, and I’m terrified it will get infected.

The dental office at my hospital eventually agreed to do it with a local on a day when my specialist will be on campus in case anything goes wrong. In two weeks. A filling would be the same wait. So I’m getting it removed in a week and a half and while I am medicating to deal with the pain, it still hurts. It hurts a lot. I have had bowel obstructions and several surgeries and a million painful tests and good grief does this tooth hurt a lot.

I am so much better than I was a year ago. I can eat solids and exercise and travel and I’m not constantly riding the line that demarcating when I need epinephrine. I have made so much progress. But damn if it doesn’t feel like I am one bad day from losing all these gains. One bad tooth, one obstruction, one flu, one slip on an icy sidewalk. It wouldn’t take much to be right back where I was. Almost nothing.

When I have described my body as strong, it has never felt like the right word. Enduring, maybe. Durable. Not strong. Things that are strong and robust can withstand damage and still work fine.

But some things are not meant to be strong. It is not a defect, but an intricacy. A byproduct of artisanal process of craftwork. Not a mistake.

All beautiful things are fragile in some way. Marble cracks, pictures fade, buildings burn, people change. Beauty is a moment, the coalescing of so many things to form this fleeting arrangement. It is the impermanence that makes things beautiful.

My body has survived impossible things. It has recovered. But it isn’t strong, even if I want it to be, and saying that it is because of one good year feels like a lie.

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.

 

The shadow edge

I was in the process of applying to medical school when it started to become obvious that I was sick. I chose not to complete the application process out of fear that I would be accepted and too sick to attend. I ultimately got much worse and would definitely have been too sick for medical school. As it turned out, I was sick for several years. And in the last couple of years, I have been too sick to do much of anything.

I am 31 years old. I finished school almost eight years ago. I have been sick for that entire duration. Somehow in my mind, being sick is recent, a brief interruption to my normal state. Eight years is not brief. I have now been sick longer than it took me to complete my undergraduate and graduate degrees.

In the middle of those years is the time when most people transition from one stage of life to the next. It is the time when you take fun vacations, go to parties, focus on your career, meet your significant other, marry. They achieve their earlier goals and move onto the next ones. They grow up, calm down and settle down.

I was sick for those years and never really made that transition. There is still a riot, loud and unyielding, in my heart.

I have dreams for 31, but I also had dreams for 25 and 28. When do you have to let them go? At what point do you not have enough time?

In some ways, it is easier when all of your dreams are washed away at once. It is harder to choose which dreams to lose. It is hard to accept that those years weren’t lost, but that they prevented me from achieving these things that are so important. Those years may prevent me from ever achieving some of them.

I feel a lot better these days than I have in a couple of years.  But now that I feel more functional, I find myself constantly taking inventory of life, of the things I never did and the things I might still be able to do, if I start right now.  It is overwhelming sometimes.  It feels like the shadow edge of hope.

I knew I would one day run out of time to do everything, that eventually pushing things into the future would mean they fell over the edge and disappeared forever. It just happened sooner than I thought.

Back together

This winter, when my entire city struggled under walls of ice and snow, I found myself dreaming about the beach. In my mind, I stood by the water’s edge, air warm, breeze strong off the ocean, sun warming my skin. I imagined myself looking and seeing the scar where they closed my ostomy site.

It was such an impractical dream that I didn’t really hope for fruition. I am essentially allergic to the beach – sunblock, sunlight, cold water, heat. And of course my ostomy site would never be closed. It was not even an option then. I never thought it was possible.

Three months later, I arrived at the hospital to have surgery that would reverse my ostomy and reconnect the two segments of my GI tract so that stool would pass through the rectum. It felt surreal, like at any time I would find a man behind a curtain, pulling strings.

They took me right in and every person who spoke to me knew that I had mastocytosis and that I needed premeds one hour before the procedure. They went over everything with me again to make sure it was mast cell safe. “You are the boss,” one nurse told me. “You live with this all the time, just tell us what you need.” I have waited years to hear these words, for providers to believe that.

They administered my premeds and the anesthesiologist came to give me an epidural. It was painless. They taped the line with my safe tape and lay me down. They pushed some midazolam and fentanyl and wheeled me into the operating room.

“I need to tell you something about my skin,” I said suddenly, jerking awake from my semi-unconsciousness. “My skin is really reactive and hives easily, so don’t think that it’s a sign of anaphylaxis.”

“We know,” the nurse said, nodding reassuringly. “It’s in the note you gave us for your chart. We know about your disease and we will be careful.”

And the first time in a long time, I believed it. Everyone in that room understood at least the basics of mast cell disease and our special operative concerns.

I lay back and they put a mask on my face. I breathed deeply and woke up a few hours later in the PACU.

I had an epidural with a bupivacaine PCA pump that I could push as needed to numb my abdomen. I had a hydromorphone PCA pump that I could as needed for additional pain management. I couldn’t feel any pain. It was amazing. I still reacted to the anesthesia with my typical nausea/vomiting but they were prepared for it. Frankly, it was so pleasantly different from my last major surgery that it seemed like a small price to pay.

About twelve hours after surgery, my GI tract started moving. Last time, it didn’t move for five days. This time it was moving and pushing things in the right direction. It was the best possible indication that this had worked. I couldn’t believe it.

The following day I was up walking around. (If you are having abdominal surgery and have mast cell disease, ask about an epidural. It honestly was the lynchpin here and made the pain so manageable so my mast cell reactions to pain were really minor.) I was eating the day after that. I had a couple of reactions but they were easy to control because there were orders to administer Benadryl and Pepcid IV as needed, as well as steroids if the reaction was severe.

I felt so safe. The nursing care was so good I wrote a letter detailing how amazing they were. They all asked me about my disease and diluted my Benadryl and they were just generally fantastic. Instead of spending seven days fighting for things I needed, I spent seven days managing my pain and reactions in an environment with many professionals who cared and understood that I was not just a crazy person asking for crazy things.

I came home a few days ago to my kitchen table covered in presents and cards from the mast cell community. It was so humbling. It was like Masto Christmas. There were books and movies, a huge piece of amethyst, stuffed animals, cute like knick knacks, funny cards, touching cards and pictures drawn by the masto kids. It was the perfect punctuation for this experience. I try to hold things together and to be strong at the broken places, and you guys just pulled everything together for me. I will never forget this kindness as long as I live.

One of the very difficult things about mast cell disease is that we so often have to fight for things we need to be safe. We are always ready for a fight, always on edge. We wonder if it we can keep this up. We are so tired. We just want to be safe. We want others to help us be safe.

This experience was the culmination of years of educating medical professionals and of them receiving education on mast cell disease elsewhere. This time when I said I needed Benadryl, they just got it for me. No fighting. I am the boss of my body.

I write a lot about how I see the world and how I interact with it as a mast cell patient. But in my private writings, I write about how I want the world to be, how it should be. Two weeks ago, I went to the hospital for surgery and during my stay, I realized I was living in that world. Maybe it was just for a little while, but I was there. I could hear the universe whispering to me, “You can do this. Look how far you have come.” So I’m ready to fight again if I have to, because I saw this other reality, and it was real and safe and we can make it like that everywhere if we try.

So when time goes by and it gets hard again, and I’m exhausted from advocating, I’m going to remember this. I’m going to remember this win. I’m going to remember that this safe place made it easy for me to heal and rest. I’m going to remember that this fight is how we make the rest of the world safe for all of us, not just for me, at one hospital, one time.

I’m going to remember that this tired, sick body made this incredible thing possible, and when it seems like I can’t do any more incredible things, I’ll remember that I achieved this, and that I can achieve so much more.

And when you guys are tired and sick of fighting, promise me that you’ll remember that this is possible, and that we’re all in this together. When you think you can’t do it anymore, just extend a hand to the void. We will be there to hold it and put you back together.

 

 

The opposite of being alone

Last Thursday morning, I flew to Los Angeles for the long awaited meeting with my mastsister Addie and her family. I arrived at Logan Airport two hours before my flight. I have flown seven times in the last year so I am overly familiar with the routine. I carry on one suitcase with medical supplies and clothes, a laptop bag with my computer and my backpack that holds my IV supplies and infusion pump. I carry a letter from my doctor stating I need these things when I travel; aside from the fact that the large fluid bags are always swabbed for explosives, it is never a problem.

I was deposited at the gate almost an hour before my flight. Anytime I book a flight, I call the airline to reiterate that I need to infuse while I fly. They always seat me in the first row so there is more room for people to navigate past me when leaving the row. I have been advised that since the IV line is attached to my body, the FAA views it the same way as an insulin pump, and that I just have to hold it in my lap while we take off and land.

The gate agent came over and began asking questions about my backpack and IV fluids. I told him that it is attached to me, showed him the bag and pump, provided my letter. He and his supervisor made several phone calls and peered at me from behind the counter while talking about me in hushed voices.

The man came back over and asked if I had a fit to fly form. Most of the flights I have taken this year were with this same airline; I took two flights with them just over a month ago. I have never been asked to provide this form and would have gotten one had I been told to.

They continued calling people. I was now the only person not boarded and getting pretty irritated. I walked over to the counter and asked them what was going on.

“If you need IV fluids, then our medical team says you can’t fly,” he told me.

I explained that I had done this several times in the last year and had a note from my doctor that says “Lisa needs the following medications on her person when flying” which would obviously not have been proffered if I couldn’t fly. I explained about my disease and that I have lived with it for a long time and was fully capable of handling any symptoms. They decided I could board the plane but stopped me feet from the plane. The pilot came out and asked further invasive questions about my health and about my IV fluids, which had already cleared security. (In case you’re all wondering, the answer is that no, my IV fluids are not explosive.)

They let me board and the entire population of the plane stared at me while the crew discussed whether or not I was, in their estimation, healthy enough to fly. With their exchanged looks, I felt my personhood being stripped away. All that was left was a complication.

I keep thinking about that other life, before I looked sick enough that a gate agent felt entitled to ask me deeply personal questions about the state of my health. I did so many things. I went to a lot of places. I was able, physically and mentally. And now I’m… not able? Unable? I don’t know what I am, but whatever it is, I’m not the same.

It’s hard to live in the present sometimes. It’s hard not to compare everything I do to a previous iteration that came before I got sick. I can feel myself walking backwards, covering every step I took to get here, trying to find the moment when my fate was sealed. I wonder if I had known back then what was wrong if it would have made a difference. I wonder if I would still be this way, if I would still be unable.

I landed in Los Angeles six hours later without so much as a mast cell hiccup, my infusion pump clicking along happily. Addie and I compared ports and medicines and discussed Frozen at length.  We camped at Newport Beach this weekend and met up with some other masto friends. Ten people with mast cell disease on a beach by the bay, looking for dolphins in the evening light. Ten people with mast cell disease swimming and accessing ports and taking Benadryl and listening to coughs and eating smores. It was calm and breezy and safe. It was the opposite of being alone.

Me and Addie

 

The comedown

Last fall, I talked with my doctors about removing my rectum. I have had colitis for years.  It hurts and bleeds all the time.

In January, my surgeon scheduled surgery to remove it. This would eliminate all possibility of reversing my ostomy. I was fine with that.

In February, my GI specialist told me I could get a subtotal colectomy and reverse the ostomy.

A week later, my surgeon told me he thought it might be better to just remove the entire colon.

Last Thursday was the two year anniversary of placing my colostomy. My surgeon called me that night to tell me that he had run into my GI specialist and they had together decided to reverse the ostomy and not remove all of the colon because if they are wrong “they can’t put it back”. This removes some colon but for complicated reasons I’m too frustrated to explain right now, there is a rock solid chance that I will end up exactly where I was two years ago before I got my ostomy. A place I swore I would never be again. He offered that if it didn’t work, then we would remove the rest in another surgery.

My hospital time after placing my colostomy is pretty hazy. I remember waking up in the recovery room and pulling the blanket, straining my neck to see the stoma. A nurse ran over and pulled the blanket up; she didn’t want me to see it until my surgeon was there. I watched her walk away before I looked again. It protruded about an inch, was pink and puckered, easily visible through the clear ostomy bag. “Like a rosebud,” my surgeon said. Yes, exactly like that.

The first time I stooled with it was a wonder, this painless relief. It didn’t last, but it was wonderful while it lasted. It hurt, but not as bad as my rectum had hurt before. Not as bad as the agony of not being to go to the bathroom, of constant distension, of your insides wrenching to no effect. No, not that bad, not like that.

I chose to get a colostomy. It’s not a choice that all colostomates get; some people suffer a terrible injury and wake up to a bag around a surgical opening into their intestines. I chose to get a colostomy, and I live with that choice every day, and every day I would say to myself, having this is a good thing. I believed it most days, if only to avoid arguing with myself. It is an act of self preservation, this sort of aggressive acceptance of your body.

Right up until the second my doctor told me he felt I could reverse the ostomy, I had never even considered it. How could I have, when before was so bad? No, I never did. This was part of my choice; I understood when I got it that it would be forever.

Right up until the second my doctor told me he felt I could reverse the ostomy, I never wanted to reverse it. But as soon as he said it, I did. I wanted it more than anything I’ve wanted in a long time.

Now I am looking at the very real possibility of ending up in the position of eventually not being able to stool again without serious intervention. At the very least, not without another surgery in the future. And that’s really stupid, it’s really stupid to decide to do this, because I’m so literally tired of surgery and procedures and shots and IV meds and this fucking port and its stupid dressing and I’m so literally tired of being sick right now that all I want is to not do this anymore. I don’t want to do this anymore. Because I have four feet of trigger living inside of my body and now I’ll never be able to stop cleaning up puke from my toilet every day and reacting to the smell of alcohol when I hook up IV fluids every night and taking the mountains of pills I push around every morning in the pillbox with a resigned finger. I am allergic to my own body and how can I ever get better when I’m literally allergic to myself?

I just want to get better and I’m never going to. But I still want it, I want it more than anything and knowing that I’m never going to doesn’t make me want it any less.

Two years ago, I woke up and saw my stoma, and for many days after that, I told myself it was a good thing, if only to avoid arguing with myself.

Four months ago, I was fine with having an ostomy forever and now I’m getting rid of it and I wish they had never told me I could.

All these plans I have made seem farcical now because they depend on me not reacting to being in pain all the time and that is only possible if I’m not in pain all the time.

Dreams are great and all, but the comedown when they are smashed is fucking hell.