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my feelings

On being vulnerable and trusting the wrong people

I like routines.  On Sunday nights, I take a shower, wash my hair, take down my ostomy, organize my pills for the week, pack my stuff for work, organize my dressing change supplies, put clean sheets on my bed and hook up my IV fluids.  I do it even if I know I won’t sleep because it relaxes me.

Last night, I was lying in bed infusing and cruising around the internet because I couldn’t sleep.  I needed to pay some bills so I pulled them up on my phone and started making payments.  When I got to my credit card, I was confused because the card was over the limit and there was no reason it should have been.
I pulled up recent transactions and there were several in the last few months.  I immediately got a sinking feeling in my stomach.  This spring when I started having a really rough go of life, one of my best friends offered to do my food shopping for me.  I gave her my credit card to pay for the groceries and haven’t seen the card since. 
I sent her a text asking if she had used my card to buy things and waited to hear that she had lost the card or something.  Nope, she admitted to using my card on multiple occasions without my permission.  She told me that she had sent in payments, none of which have been credited to my account.  So in the last four months, she has, on multiple occasions, used my credit card without my permission and tried to send in payments without my knowledge so that I wouldn’t find out. 
This is a person who has taken me to the hospital for appointments and taken care of me after surgery.  This is a person I chose to help me at a time when I was feeling unbelievably fragile and vulnerable.  I have known this person for almost twenty years.  And she stole from me. 
If she had some type of emergency and used my card, and had let me know about it, I wouldn’t have cared.  If she had asked me to borrow money, I would have given it to her, no questions asked.  Instead she has been stealing from me for months.  It’s really making me wonder about a lot of other things.
I can only assume that she was counting on my illness to not get caught.  She knew I was exhausted and distracted because of how sick I have been recently.  She knew that I trusted her and would keep sending in my regular payment without paying attention to my statement because I believed she was trustworthy.  She was right.  That’s exactly what I did.  If not for the fact that I couldn’t sleep last night, this might have gone on indefinitely. 
I was planning to go to Asia with her this fall, and felt very secure in that plan because of how much I trusted her.  I was really looking forward to going.  Now instead of booking our tickets for that trip (which I was planning to do on Wednesday!), I have spent the day on the phone with my credit card company and in a really uncomfortable state of stage 2 anaphylaxis.  I have needed a whole mess of extra meds today and it is just barely containing the reaction caused by all of this.  I’m accepting bets on the over/under for how much extra medication it takes in the next few days to get me stable. 
I have been very open about needing a lot of help to get through my days.  The people I have asked to help me are my very closest friends and family.  These are people I am not embarrassed to puke in front of.  These are people who I trust to help me into the shower.  These are people who have seen my stoma.  These are people who will rub my back when I am screaming in pain from a bowel obstruction.  These are people who make jokes with me about my illness and generally make me feel less alone. 
Finding out your friend is screwing you is bad enough, but sick people are especially at risk because we often have no choice but to trust people to help us.  And since I’d rather not need someone to help me do basic things, it is really humiliating and horrifying to discover that my trust was misplaced.  I have stood by this person through seriously hard times and supported them when no one else did.  I just really can’t believe it. 
I generally try to wrap up my posts elegantly, but I just can’t right now because seriously what the ever loving fuck. 

Your top five problems

I had a conversation with one of my friends many years ago about kids worrying about things.  I don’t know why I remember this so vividly, and I don’t remember why we were talking about it.  I remember him saying, “I think no matter who you are in life, you have your top five problems.  And you worry the same way about those problems, no matter what they are.  So if a kid is worried about a spelling test and you’re worried about losing your house, the amount you each worry is the same.”  I started assuming that everyone was worrying about something and even if it seemed insignificant to me, it was important to them.  It has made it much easier for me to be kind to people who frustrate me.

I remember this conversation when I observe interactions in the mast cell community, which largely happen online.  Communities like this have some weird dynamics.  Sociologically, it’s interesting; as someone occupying one of these microcosms, it can be annoying.   Venting about your symptoms can create a weird situation.  Some people will relate to you and will say so.  Some people will relate to you, but feel guilty saying they relate because they feel like it will offend those with more severe disease.   Some people will think you’re whining and don’t have it that bad and should get over it. 
It is okay to vent.  You do not need to feel guilty if your symptoms are not as bad as someone else’s.  You do not need to feel guilty if you have support.  You do not need to feel guilty if you have good insurance.  You having these things does not change the realities for others who have worse symptoms or circumstances or whatever.  The strength of our community is that we understand each other and support each other.  In exchange for getting mast cell disease, you also get to complain about it sometimes to people who get it.
When I sleep, I move through my dreams in a whole, disease-free body.  I don’t have a colostomy or a central line or surgical scars.  I can hear and I never puke.  When I wake, I am often surprised to be in this body, this damaged and painful vessel.  I am forced to acknowledge and accept that this is real.  On some days, that’s really, really hard for me.  I wake up to pain and vomiting and I pull my blanket up over my face to be alone with my tears for a little while.
So when people say things like, “You need to get over it,” all I can think is: I’ll never get over this.  I live my life, and I like it, but I will never get over what this disease has done to me and my life.  I will never get over who I could have been if not for mast cell disease. 
Because I like the person I am, but the person I was trying to become – I liked her, too.  She’s who I think about when I’m under my covers on those mornings when I don’t want to believe that this is still real.  I think about all the extraordinary things she could have done, and how the only extraordinary thing I’ll do that day will be to get out of bed when I don’t think I can. 
You can’t get over something that is still happening to you.  You can only learn to live with it. 

Show me how big your brave is

I have never thought of my life as being particularly terrible.  It’s hard and it’s complicated, but I don’t think it’s bad.  Like I have to ship 20 lbs of medical supplies and IV solutions on ice to the other coast but I get to go to Seattle and have a great time.  Complicated.  Not bad. 

I ran into someone at work today that I only see once a month or so.  I caught him up on my recent symptoms and general medical happenings.  “You seem to be dealing with it very well,” he told me.  “I suppose,” I replied.  I never really know what to say when people say that to me.
I thought about our conversation on the train ride home.  I thought about how my life must look to other people.   It must look overwhelming and scary.  It might look a little sad. 
People tell me sometimes that they don’t know how I do it.  I mean, yea.  Me either, some days.  But really, it’s not like that.  I didn’t choose this life.  I just have it.  If you woke up with a chronic illness, you would do all these same things, too.  There is no choice involved.  You do what you have to in order to survive.  A lot of the time, that means ignoring all the ways in which my life is unlike anyone else’s.     
There are days when I feel the weight of my illness in every muscle fiber, every thought, every intention.  And sometimes on those days, all I can do is take medication and sleep, the pain and nausea and exhaustion too much to be productive.
But some days I think about these people who think that I’m brave and think that maybe I really am.  I get up and put on a pretty dress and twist my red hair into a knot and sing along to Rancid while I put my makeup on.  I go to work and eat even though I know it will make me puke and walk outside even though the sunlight makes me feel like I’m wilting.  I see my friends and go out and enjoy my life.  When I can finally take pain medication and crawl into my bed under my heated blanket, I feel like I accomplished something, for all of us. 
On these days, my bravery shows in my happiness, I suppose.  It shows in the fact that even mast cell disease cannot stop me from enjoying my life.  And I never really thought about it, but that is a choice.    

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.

Inside the bleed

When you are chronically ill, your life divides itself into clean segments of before and after.  There can be multiple befores and afters.  Before diagnosis, after you lost your job, before you had surgery.  Eventually all the befores move further away, a glittering line of time points along the horizon.  They make the past seem so beautiful.

Not a day goes by that I don’t think of these befores, at some point.  I don’t always linger, but it’s hard not to look back, to compare my now with my then.  Every missed opportunity, every experience that I postponed.  Some days it’s not the uncertain future that I struggle with.  It is this definite past, every decision I ever made swarming together and crushing against me with all the weight of regret.
This week, I packed up my multitude of medical necessities and flew thousands of miles from home.  I took an hour long yoga class outside in the sunlight, put on my best 40’s style dress and went dancing, and stayed up way past my bedtime telling stories.  I have needed a lot of rescue meds and taken a lot of precautions, but I am doing it.  I am in a city I never thought I would see again, doing things I never thought I would do. 
On days like today, it seems that the edges of these befores and afters start to bleed together, and I instead find myself living in the space between them.  And it’s still dangerous here, but there are possibilities again that I had shelved a long time ago. 
On days like today, I am tired and sick and very happy.  It feels like maybe I could do this for a while, if I have to. 

Mundane dangers

I recently went out to a restaurant with my family.  I loaded up on meds before we went.  As we were sitting at the table, a thunderstorm rolled in.  I watched with dismay as the street before me became a water way.  I wondered how I was going to get to the car without getting my PICC dressing soaked, causing it to come away from my line and exposing me to a central line infection.  I ended up asking the waitress for a trash bag and wrapped my arm in it.  I ran to the car and was terrified until I got home and could pat it dry.

Today I found out that the IV medication I paid $200 to overnight to Seattle was not delivered and is not refrigerated, meaning that it will almost certainly be useless.  My other option is to pack all of these supplies in my luggage, but it would be too heavy for me to carry.  Not having IV fluids guarantees a bowel obstruction so going without is not an option.  I have talked to eight different people about this and needed medication when I started reacting from getting upset. 
I hate how much I need everything to work perfectly to manage my disease.  It is by the far the most difficult part for me.  I hate that I need people to be completely accommodating.  I hate that I also need nature to be forgiving.   I hate that my life has no flexibility and when I protect my routine, people think I am unyielding for the sake of it.  I can’t control these things, but they can control me.
Day to day life with mast cell disease requires elaborate scheming to achieve even basic things.  Routines are crucial to not needing epinephrine.  Making plans ahead of time keeps us safe, but only if nothing changes.  When things do change and we get upset and people act like we’re crazy, it further reinforces how frustrating this disease is. 
I don’t want to be this way.
I don’t want to be the type of person who cries when something goes wrong.
I don’t want to need other people to keep me safe. 
I don’t want to be demanding and unreasonable.
Some days, I am just so tired of this world, with all its mundane dangers.

World without end

I have absolutely no idea what I did on July 8, 2011.  I’m sure I did mundane things and stayed up late.  I didn’t write in my journal.  It’s funny that I don’t remember this day, one of the fault lines along which my life split. 

At the same time that I was ambling through a normal day, my cousin was climbing over his futon to hang himself outside of his bedroom window.   Almost an hour later, first responders took him to a hospital.  He was resuscitated after such a long time that meaningful recovery was impossible.  
My cousin and I grew up together, less than two years apart, but drifted apart once we hit high school.  There was never any animosity, we just didn’t really see each other much anymore.  We still knew each other in the way you only can if your mothers are close – we heard about each other, all the highs and lows, but had little actual contact.  It had been years since we had seen each other, lots of hauntingly near misses.  I regret deeply every one of them.
My mother called me early on the morning of the 9thand told me what had happened, that he was in the ICU.  I called around to mutual childhood friends until I found someone to grieve with.  There wasn’t much to say.  Together we went up to the hospital that night. 
There were a lot of people in the waiting room for my cousin.  He had a lot of family on both sides, a lot of friends.  We ran interference with the staff while his mother smoked in the courtyard.  At his mother’s behest, I grabbed his chart off the wall by the nurse’s station and flipped through it.  I explained the medical terms, a hollowness expanding inside of me.  And then, when there was nothing else to do, I went into his room to visit with him.
He looked fine.  The fact that he looked fine made it much harder.  He literally looked like he was going to open his eyes and start talking.  There was a bandage covering the thin red line encircling his throat.  His neck wasn’t broken.  The rope had compressed the vagus nerves, cutting off communication from his brainstem to his vital organs.  It had probably happened in less than a second.  He had probably been dead in just a few minutes. 
I talked to him for a while.  I reminisced for a while, shared funny memories with the otherwise empty room.   I thought about how long it had been since we were children.  I thought about how long it had been since he was truly happy. 
My cousin lived for 13 days in the ICU.  It was awful.  We all knew he would never wake up, but it felt like not hoping was a betrayal.  So we carried this sharp and dangerous hope inside of us, and it tore everything around it.  I wish that he had died on July 8, that I had never had to see his body shudder with artificial ventilation.  I wish that I could remember him as he was, all of it, until that day.  I don’t want this ugliness to be part of his story.
Late on the night of the 20th, my friend called to tell me that my aunt was ready to let him go.  I went to the hospital.  I opened his eyes to see them one more time.  I checked his non-existent reflexes out of habit.  I told him that I would see him again, somewhere in that world without end.  I told him that I forgave him and I went to go get drunk with his brother. 
On the morning of July 21st, I opened my eyes into a world in which my cousin was no longer alive.  My sister and our friend, my cousin’s best childhood friend, drove 80 miles to the campground we all had gone to every weekend and all summer long for most of our formative years.  We drove slowly down the dirt roads, the air thick with nostalgia.  We swam in the river and lay on the beach, smaller than I remember. 

Our friend climbed high into the rafters of one of the sitting areas and wrote my cousin’s name in thick bold lettering.  He wrote dates below it, just numbers and punctuation, and the time they spanned felt short.  It all felt very wrong.  Watching him write, I knew that we were too old to be here, in this place where we had grown up. 
But in that moment, my memory stretched back 15 years, to the summer of 1996.  I could see all us running over the packed dirt and concrete, doing cartwheels over picnic tables, laughing.  We were all young and plotting and exploring.  He was having fun.  He was happy and safe.
I like to think that heaven is a lot of things, the best moments of your life played out over and over again.  I like to think that everyone who was present in those moments is present for real in heaven, because it’s the culmination of all things in which all boundaries are lost.
In one part of heaven, I will see this: a big group of kids at a secluded beach at the bottom of a steep dirt hill, jumping off a dock and swimming in the river.  This is the story I want – the one where he never left that summer.  He is still 14 and he never finds drugs or depression.  And in this story, I remember clearly that we were all happy once.  For a brief moment in time, we were all happy together.  That is what I want to remember.

As good as it gets

Yesterday, I had a very normal day.  I worked from home and stayed inside, out of the heat.  I ate low histamine food and avoided triggers all day long.  Around 8 last night I started reacting anyway and needed all the meds.  Stability is like a mirage; it looks close, but I can never quite reach it.

There are a lot of people for whom mast cell disease is mostly a nuisance.  My disease was never like that, but I sort of behaved like it was.  I knew I would pay for it if I stayed out late or exercised too much but for a while, I could make myself do it anyway.    I wanted to believe I could have any life I wanted.  I wanted to believe that my body could take as much as my mind could.
But my disease isn’t just a nuisance and eventually it caught up to me, all at once.  I don’t know about you, but mast cell disease runs my life right now.  It will be at least a voting member for as long as I live.  Mast cell disease isn’t something I gave into it.  It is something that happened to me.  To imply that by living within the lines it drew means I have less willpower or ambition is offensive.  To say that I am weak because I have to avoid triggers as much as possible is just naïve. 
And when people say, “I don’t let my disease control me,” all I can think is, Well, there’s still time for that, isn’t there. 
I used to be so independent.  I used to do everything myself.  Now I have to have people drive me around most of the time, I have to get help to carry things, my friends come over and do chores for me, I can’t travel alone.  Maybe my apartment is messier than I would like, and I always have unfolded laundry piled in my basket chair, but I can work full time, and see my friends and family, and be safe. 
I still have dreams.  I still want to do things I know I’ll never be able to do.  Every once in a while, I’ll be talking to someone about these things and get really excited.  I think to myself, if I could just hold onto this feeling, I could do this.  But I never can.  This loss of possibility is the hardest for me.
For some of us, this is as good as it’s ever going to get.

Seattle, redux

I was diagnosed with mast cell disease in January, 2012.  At the time I was diagnosed, I was sleeping through entire days, so brain fogged that I frequently forgot basic facts, and spent most of the time I wasn’t asleep in the bathroom.  I was a hot mess.  My mast cell specialist ordered the relevant tests but was sure this was some kind of mast cell disease, so he put me on medication immediately. 

About two weeks after starting medication, I woke up one morning and felt better.  Not 100% better, but better than I had felt in months.  A few weeks after that, I went back to work.  I was trying to learn the boundaries of my disease but in those first few months, I honestly thought that I might get my life back.  I still needed a lot of rest but I felt stronger, happier and much more functional.  I call this my “honeymoon period.” 
During this time, one of my dear friends came home from Seattle to have a wedding shower with her Boston family and friends.  While making duct tape flowers, I decided I was going to go to Seattle for the wedding.  I had been feeling pretty good for a few months and figured there was no reason not to.  Several of our friends were going so I figured if I got into trouble, there would be people to help me. 
So I bought airfare to Seattle and arranged to fly out and share a hotel room with one of my friends.  I requested the time off from work and didn’t really think very much about it.
The flight out there was fine.  We got picked up from the airport and found a bar that served us grilled cheese sandwiches and tomato soup on a very wet night.  We went back to the hotel and crashed.  So far so good.
In the morning, we wanted a big breakfast.  We walked around Seattle and eventually ended up at an awesome place called Glo’s.  I had Eggs Benedict and a lot of coffee.  I then discovered that I could no longer go to the bathroom. 
I didn’t know exactly what was happening but I knew that it was different than anything I had experienced before.  I have had GI problems my whole life.  Something was wrong.  We went back to the hotel and things got worse into the next day.  I called my doctor and he agreed that if I felt it was safe, that avoiding going to a hospital in Seattle was the best idea.  I employed some extraordinary measures, put my friends to work and pushed through the pain to make it to the wedding.  I’m glad I did, but it was not the trip I wanted to have.  It proved definitively that I was sick, that I was always going to be sick, and if I didn’t remember that, I was going to end up in a lot of trouble.
That trip to Seattle is the very first time I gambled that I was healthy enough to do something and lost.  It was also the point at which I realized my mast cell disease was seriously damaging my body.  The dehydration caused by the flight had turned an annoying but manageable situation into a nightmare.  It would have happened eventually, I’m sure, but the fact that I wasn’t near my doctors and home when it happened made it worse.  In the few months after I got back, I had scopes and tests and met with a surgeon.  My systemic symptoms were being triggered by the pain and poor lower GI function.  Less than a year later, I had surgery to place a colostomy. 
Next week, I’m going back to Seattle.  It feels a lot like I have a score to settle.  There’s going to be a 40’s lounge night and a trip to Portland and cute dresses and maybe a death tour.    There’s also going to be low histamine food and some flushing and probably vomiting and possibly some anaphylaxis.  And maybe I’m going back with a central line, a colostomy, lots of IV meds, several bags of Lactated Ringer’s, ten Epipens, a backpack full of oral meds, healthcare proxy paperwork, sterile dressing change supplies and a best friend who can push my meds if I get into trouble, but I’m going back.  Stand up and fight.
I’m coming for you, Seattle!  This is going to kick ass.

Knowing it when you see it

I grew up in Massachusetts, a proud liberal.  I believe strongly that society should be as inclusive as possible.  We have a long way to go in combatting racism, sexism and other forms of discrimination.  I think the difference between equality and fairness is sometimes not obvious, and this can cause some confusion.  I try to be as sensitive as possible to all groups of people. 

One of the things I have come to understand about being chronically ill is that we are misunderstood in a way that is permanent.  It is not like being misunderstood for your beliefs or ideals.  There is no way to make anyone who doesn’t live this life understand me.  They can sympathize, but they can never really know.  I try to educate wherever possible, but that’s not the same thing.  I accommodate the world to my needs as much as possible and do pretty well with that.
People with mast cell disease have so many bizarre restrictions.  There’s a reason people sometimes don’t believe us when we tell them.  If you can separate yourself from your own reality, it’s easy to see how absurd some of our claims are.  They are true, but that makes them no less unusual.  In this way, we are very much a minority.  So when people make jokes about seemingly innocuous things, they are sometimes assuming that they are in no way offensive. 
I find that one area that causes trouble over and over again is comedy.  For people who live in fringe communities, like rare disease or genderqueer or whatever, it is sometimes hard to know what exactly is offensive.  This sounds counterintuitive, because I think that most people think that they’ll know it when they see it.  But sometimes you don’t. 
I think part of the outrage we feel when people make jokes about things we can’t do is that it makes us feel misunderstood.  But the fact is that most people are never going to understand us.  And so instead of being able to definitively say, that is offensive and that’s not, we are left with this infinite space populated by our myriad feelings of hurt.  Then the day changes and maybe we feel differently.  It is a moving target.
I am not easily offended and haven’t been for years.  When people make jokes about things are harmless to most people but dangerous for me, I do not get offended.  I usually comment after, “Unless you have mast cell disease.”  Sometimes it spawns a conversation and sometimes not.  I try to consider the intention of the person telling the joke.    
But if you are offended by things like this, that’s okay.  It is okay to feel however you feel.  We are all at different places in this journey.  We don’t move through certain feelings and eventually all end in a place of acceptance.  It is more like floating in the ocean; we live in the ebbs and flows, dynamic. 
There was a Supreme Court case in 1964, Jacobellis v. Ohio.  It involved whether or not the state banning the showing of a French film with considerable nudity and sex was a violation of the first amendment.  Of specific importance was whether the film was considered pornography.  While I don’t remember the details of the case, I do remember a famous opinion handed down by one of the Justices.  “I shall not today attempt further to define the kinds of material I understand to be embraced within that shorthand description (of pornography)… But I know it when I see it.” 
It’s not always that easy.