I had this life once

Rolling the hard six

The day before I went to Seattle, I saw my mast cell GI specialist.  I was drinking coffee when I arrived.  No matter what I put into my mouth, I get nauseous.  It’s not as severe with liquids, but it still happens.  I throw up a lot, and I know that it is due to my mast cell disease because I discovered that if I have taken IV Benadryl in the hour before eating that I don’t get nauseous.  But I can’t take IV Benadryl before every meal.  It’s not sustainable and I need to reserve this option as a rescue med.   

I am very transparent with my doctors.  I call, text and email them often.  My mast cell GI specialist is aware that I vomit so often that my throat bleeds.  I asked him at what point I need to be concerned about the blood.
“If you throw up enough blood to fill up a cup like that, you need to be concerned,” he answered casually as he made notes.  I have become someone who throws up blood often enough that it is not concerning. 
The lower GI fallout from eating is becoming more and more significant as well.  I have always had heavy GI involvement and my digestive systems sustains more and more damage with each passing day.  It was only a matter of time for me.
I keep eating, even though I know it will make me sick.  I don’t want to end up on TPN but I realize it is becoming a likelier option.  I’m just stubborn in this way.  I want to eat, even though it’s obvious that my body can’t. 
I am probably consuming less than 1000 calories a day most days, and of those, I am often throwing some of it back up.  I can generally keep down liquids, so I rely on those calories.  I spent part of my evening looking up elemental formulas online.  I do not want to be living this life sometimes.  I do not want to be a 30 year old woman who drinks formula.
I saw my immunologist a couple of weeks ago and laid it all on the table.  “It’s one thing to be a 30 year old woman who sleeps through days and shits into a bag.  It’s another thing to be a 30 year old woman who sleeps through days and shits into a bag and also can’t eat anything without throwing up.  That’s where the line is.  That’s my line, right there.”  I pointed to my proverbial line, stretching out between us. 
“Yea, I think it’s time to do something drastic,” he said, and I agreed.  We had a lengthy conversation about the molecular mechanisms, benefits and risks of various meds, monoclonal antibodies and chemo drugs.  We agreed to respectively reach out to the experts we had available to us and formulate a plan.  We have not yet reconvened, but the plan will assuredly involve some type of medication with very serious risks.  It will probably involve more lower GI surgery. 
Of all the qualities that have prepared me to live with rare diseases, this is the one I find most valuable – the ability to not blink.  I make the hard decisions with little hesitation and I don’t regret them.  If I were given a choice between living ten years and spending five in bed in massive pain, or living seven and living my life until the end, I would take the seven.   Without blinking.
I don’t know if being aggressive with healthcare is the better way, but I know that for me, it has always been the only way.  Some things are worth fighting for.  Even if you know you will lose, sometimes it’s worth it to fight.  I have to know that I tried everything. 
I have to live in this body every day.  I have to know that I did everything I could to salvage a life. 
We all have to make choices we can live with. 
So I make these choices.  And I don’t blink.

Losing time

Stories about time travel have always fascinated me.  I read my first one in grade school and was both intrigued and horrified by the implications.  You could go back and fix mistakes, but sometimes those mistakes shape who you are.  Everything you do matters.  Change one thing and you change everything.

I have always tried to do more than I was able to in any window of time.  When I was in college, I worked full time, did lab work for my senior thesis and took a full course load.  When I realized that I didn’t have enough time to do all of this, I stopped sleeping on Tuesdays and Thursdays.  I wasn’t satisfied with the amount I could do in the time I was given, so I stole some extra time.

When I interview for jobs, people are always confused.  “The dates on your resume are wrong,” is one I get a lot.  They’re not.  I really did work two full time jobs in grad school at the beginning of my illness.  I just needed to do all these things at once so I sacrificed sleep and time off.  It has taken its toll, but I don’t regret the decisions I made.  I had to get through school and I had to support myself.  Necessity is a powerful motivator.

In the weeks before I was diagnosed, I would sleep through entire days.  I would not wake to eat, drink, pee, or take medication.  I sometimes could not be woken, and if I was, I was very disoriented and confused.  My disease had strained my body to the point that it needed huge amounts of sleep to function.  I would sleep for 22 hours, then be awake for 36-48 hours and do it all over again. 
Since about April, I have had this overpowering need to sleep all the time.  It had gone away for a while, but this was an obvious side effect of the steroids and you can’t take steroids forever.  I have to be woken up every day in order to take my morning medications or I will wake up and anaphylax.  When I go to sleep, I never know when I will wake up.  I have numerous alarms, including a deaf alarm that shakes the bed, but when I am in these “mast cell comas,” it makes no difference.  I need a person to come in and wake me up.
Last week was quite a week for me.  I knew there would be fallout, and I was not wrong.  I have been awake for less than 36 hours in the last five days.  In the hours I am awake, I am uncomfortable and flushing and having GI issues.   I know it will equilibrate once I get through this.  We are changing some meds to try and address this issue.  But the feeling of losing is palpable. 
When you are young, you have this feeling that you can always do something later.  You procrastinate and reschedule things and there is no danger that you won’t eventually get to these things.  But then one day you wake up after 17 hours of sleep and you have all these things to do and you have to do them all right now because once you fall asleep, they might not get done.   I know that this is because of what happened last week.  I know my body is trying to recover from the stress.  But I can’t help but feel like I’m losing time, and that feeling is overwhelming and sad. 
There’s no time anywhere for me to steal.  I read this story by Harlan Ellison in high school about a society in which people only get an allotted amount of time for their entire lives.  This feels like that.  It feels like I manipulated the time continuum earlier in my life and because I did, I have to live with less now. 
Every time I wake up, I hear this buzzing in my head and I think, that’s what time sounds like and it’s catching up to me.

Keep going

In February of 2007, I went to a party my friend was having.  While there, I started talking to a woman I didn’t know.  She told me about having walked the Breast Cancer 3-Day, in which you fundraise to support breast cancer research, prevention and treatment, and then walk 60 miles over 3 days. I told her I could never do anything like that and ate some cheese and crackers.

Later on, I woke up in the middle of the night.  While walking to the bathroom with my eyes closed, I realized that my ass was jiggling.  I am laughing as I write this because it really did unfold like a movie shot – I realized my ass was so big that it had its own center of gravity and I immediately froze and opened my eyes, completely awake.  I decided right then to do the Breast Cancer 3-Day, not because I am a good person who wanted to fundraise (although I later became passionate about this), but because I wanted to have an ass that didn’t shock me into wakefulness. 
I did the training and lost a lot of weight.  Like 40 lbs or something.  I remember closing my medicine cabinet and looking into the mirror and realizing I didn’t have a double chin anymore.  I got smaller and healthier and most of all, I felt stronger and more able.  I got in shape.  I walked 10-12 miles at a time in the sun and heat.  I did everything I was supposed to.
The weekend of the Boston 3-Day was blistering, and so hot and humid that they almost called it off.  I have since walked four other 3-Days, some in other cities, one other in Boston, and it was by the far the worst weather I encountered (including the massive freak rain storm in San Diego.)  I put on sunblock and stretched and got walking.  At the end of the first day, I couldn’t straighten out one of my legs and I was sore everywhere and caked with dirt.  I didn’t think I would be able to walk the next day.
But the next morning, I woke up and my leg straightened.  I was sore but I could walk.  So I did.  I walked slowly.  I was one of the first to leave camp and the last to get back to camp that day.  On the third day, the shortest and easiest, with milder weather, my feet were such a mess that I literally wrapped them in ace bandages and walked the last few miles in flip flops.  They hurt so bad.  But it seemed such a waste to not finishing after walking 55 miles in 3 days.  So I did it.  I did it really slowly, and it hurt, but I did it.
It is funny to think that this event, that I undertook to achieve a smaller ass, changed me as a person. My mind wants to smooth over the suffering and forget how hard it was, give the memory a glossy touch.  But I never let it.  My strength is in how far I have come.  My strength is in still going even when it seems hopeless.
In December of 2009, when I was struggling to understand speech, one of my best friends grabbed my face and said very loudly, “I will learn ASL because I can’t not talk to you.”  And so I kept going.
In the winter of 2011, when I was numb from the pain and stress and exhaustion, my doctor said, “I want you to see one more doctor, and I think he will know what’s wrong with you.”  And so I kept going.
When I had a lengthy discussion with my doctor a couple of weeks ago about the virtues of chemo for the treatment of systemic mast cell disease, one of my best friends said, “Tell me when you’ll be at the hospital and I’ll come see you at the infusion center.”  And so I kept going.
I have posted about my friend with ASM whose doctors told him he was out of treatment options.  His doctors had applied for compassionate use of a clinical trial drug for him and it had been rejected, twice.   I told him, “Your doctors are doing something wrong, you are the exact type of person who should be on this drug.”  He told me it was over and he wasn’t going to get the drug.  I told him not to stop.  I told him to keep bothering them.  I told him that I believed this could be fixed and that it would get sorted out. 
Last week, he found out that the company approved him for compassionate use of this drug and he will start treatment next week.  And so he can keep going. 
I had no way of knowing that he would get the drug.  I just thought there was a chance and sometimes that’s all you have to hold onto.  Sometimes you just have to find anything that might work and bang on every door until someone gives you a chance to prove that it won’t.  And maybe it won’t work.  But at least he’ll get to find out. 
My mind recoils when I think back to the months before I was diagnosed.  I would never go back to that, and that means that I must have made progress.  It was hard then.  Every day was so hard.  But I kept going, and I came all this way.
I don’t know how this is going to play out.  I don’t know where I’ll end up. 
But I know it’s not here.
So I keep going.

Beautiful things I can’t have

I’m a Buffy fan girl.  I’m sure this surprises no one.  Strong characters, the supernatural and witty banter is basically a recipe to get me as a loyal fan.  I know all the words to the sing along episode and have been compared to Willow more times than I can count. 

There’s an episode in the fifth season where Xander and Anya go to look at an apartment.  She is upset because she doesn’t think they’ll get it.  Xander asks her what’s wrong and she says this:
“What’s going on with me is that my arm hurts… and I’m tired… and I don’t really feel like taking a tour of beautiful things I can’t have.” 
That’s how I feel right now.  I don’t really feel like looking at beautiful things I can’t have.
I have always identified as a traveler.  As a kid, I would take out language books from the library with the clear intention of learning the language for when I went there.  When I was 19, it occurred to me that if I saved up my money, I could go wherever I wanted.  I got some books and planned a trip and went to Europe. 
In 2007, when I was starting to get sick, I went backpacking in Scandinavia.  I went hiking and got really lost in this beautiful national park in Norway.  I got drunk on a ferry sailing between Estonia and Finland.  I felt tired and at the end, I felt sick, but I was mostly able to do everything I wanted to do.
In 2009, I bought tickets to Ireland and went for a quick four day trip with my boyfriend at the time.  I was exhausted and sick, but I was still able to go.  I needed a lot of sleep but otherwise it was fine.
I took a bunch of other trips.  In 2012, I went to Seattle and we all know how that went.  I came home to lots of serious news and slowly I stopped thinking of myself as a traveler because it hurt a lot.  I stopped reading my dozens of travel books and drawing maps and studying languages.  Doing those things felt like sticking my hand into an open wound.  It felt like trying to push through the looking glass only to find I was still in this strange facsimile of my life where I was sick and couldn’t do this thing that defined me.
In the last couple of weeks, I started feeling like maybe this was going to be possible again.  Maybe I could travel, if I had someone with me to help me.  Maybe I could plan trips again and look forward to them.  Maybe I could go to all these faraway places and feel this stillness in my soul that I only find when I’m away from home. 
I was supposed to go to Asia in the fall.  I was originally supposed to go in the spring but I was too sick.  So we decided to go in the fall.  We were going to fly through Dubai to Bangkok, spend a few days in Bangkok, take a private tour to Angkor Wat in Cambodia, go to an elephant preserve, spend a few days in Dubai on the way back.  I have been planning this for months, both the fun part and the not insignificant logistical shuffle of travelling out of the country with a ton of medication, medical supplies and large bags of IV solutions.  I was planning to book our airfare tomorrow.
But a few days ago I found that one of my best friends was stealing from me, and she was supposed to go to Asia with me.  She was supposed to help me to live this dream that has buried for years under the rubble of mast cell disease. 
I’m more upset about Asia than I am about the money.  Because I found out a couple of weeks ago that I could still travel, but only if I’m with someone who loves me and understands my disease and what to do in an emergency.  I cannot travel alone.  I wish I could, but I can’t deny that it’s too dangerous for me. 
The fallout of this woman stealing from me has been significant.  I have needed epinephrine and lots of IV meds and steroids, and even now as I type this, my skin is burning and my heart is racing and my insides are doing that cringe and shudder that means that with just a little push, I can be in trouble again.
When you have mast cell disease and people mistreat you, your choices are to move on quickly so as not to anaphylax or to get mad and risk ending up in the hospital.
It’s not as much of a choice as you might think.
If I fall down and scrape my leg, it is an emergency.
If I forget to take a single dose of any of my many medications, it is an emergency.
If I forget to put on the AC and fall asleep, it is an emergency.
If I get too mad, it is an emergency.
Around 4 this afternoon, I locked a syringe of 50 mg IV Benadryl into my PICC line and angrily uncapped my Epipen.  “I really hate that I’m so sick that I have to use epinephrine at home on a regular basis.  That makes me really mad,” I told my mother as I brought the tip down against the outside of my thigh.
There seems to be some confusion over whether or not what my “friend” did was wrong because she “tried to pay it.”  (I know, don’t get me started.)  So let me make it really clear.
I don’t care about the money.  If she had asked, I would have given it to her.  This is not about the money.
This is about everything else she took from me.
She took my right to feel like I can trust people to take care of me.
She took my right to feel like I can accept help without getting screwed.
She took a lot of my energy over the course of our friendship.  A lot. 
She took my safety because this was such a violation that I can’t help but feel angry and it is making living in this body even more dangerous than usual.
She took my ability to go on this trip.  She took my ability to feel like I can get this part of myself back. 
So disappointing.  I have never been more disappointed in a person in my entire life. 
And for the sake of being thorough, I want to deal with this: at least one person thinks that it’s okay that they knew about it and didn’t tell me because she wasn’t “being malicious.” (I don’t even know what that means.)
What she did is criminal.  Stealing is a crime.  Stealing from a very sick person is a more serious crime.  This is not the personal opinion of Lisa Klimas.  This is the opinion of the criminal code of the State of Massachusetts.  If you know someone is preying upon an ill person, and you do nothing, you are just as guilty.  You are not a “good person” who is getting “blamed by association.”  You are a loser.    
My friends are closing ranks around me.  I have received over a dozen offers to do my food shopping, all with the added promise that they will not steal from me.  They are making me laugh.  (Quote of the day:  “’How does one pay a credit card without the bill?’ ‘Oh, I just write credit card on cash and throw it out the window, does that not work?’”) They are reassuring me that they will not betray me.  They are reassuring me that they will take care of me and that they love me.   They are letting me know that they will support me however this plays out.
They are really angry that this happened to me.  Honestly, I am a little surprised at how angry they are.  But I get it.
I’m tired of looking at beautiful things that I can’t have. 
And they’re tired of watching me. 
So disappointing.

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. 

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. 

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.