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I had this life once


I have always been socially awkward. For most of my life, there has seemed to be this set of universally applicable rules that I don’t understand. In particular, I find that I am generally neither embarrassed by not impressed with a variety of circumstances that seem extraordinary to the general population. I am not the kind of person who is upset by immodesty or esoteric ideas or the rending of social rules. I never have been. I don’t know why.

The day before my colostomy surgery, I was lying on my couch, trying to take a nap. My phone rang and it was a woman from an ostomy group. I remembered vaguely telling my ostomy nurse that it was okay to be contacted by this support group. I always say yes to stuff like that because I figure it can’t hurt.

The woman on the other end was very sweet. She asked if I was upset. I told her I wasn’t. She was gentle, but she persisted. She didn’t believe me.

“No, I really just want to be able to shit,” I told her, laying my arm over my eyes to block out the sun. “Honestly, I’m a lot more afraid of the damage from my mast cell disease if I don’t get this out than I am of shitting into a bag.” She was quiet for a while. “What?” I asked.

“Nothing, it’s just….You really aren’t upset,” she said finally.

“No, I’m really not,” I answered. And I wasn’t.

She offered me her many good tips on how to hide your ostomy bag. She clearly cared a lot (and felt badly – I was the youngest person her group had worked with) so I listened. She talked about girdles and pregnancy bands and tank tops and belt things with pouches and bathing suits. It was interesting, in a sort of voyeuristic way. I thought about her when I went swimming a couple of months later. My preparation consisted of putting on my normal two piece bathing suit and going in the pool. I didn’t see any reason to hide it. I wasn’t ashamed of it.

When I found out I was getting a PICC line, several people asked me how I would cover it. “With an occlusive dressing,” I answered automatically every time.

“No, like so people won’t be uncomfortable,” they sometimes followed up.

“It’s not my problem if they’re uncomfortable,” I said with increasing irritation every time I responded. “It’s not my fault I need the line.”

Someone asked me how I covered my port a few days after I got it. “I don’t.,” I said, thoroughly tired of this line of questioning. “It’s just not who I am.”

Modifying my body doesn’t upset me, even in the ways I just described. My hair has been in turns purple, blue, red, pink and red again. I had numerous piercings, all over my body, until once, after a surgery, when I just didn’t want to put the jewelry back in. It didn’t feel right anymore.

I am sure to many people, it must seem like my disease doesn’t upset me. That’s not the case. My relative resignation about the state of my illness is a survival mechanism. It looks a lot like not caring sometimes, but that’s not what it is. The pain shows, but it’s harder to see if you’re not watching carefully. It shows in the moments when I am unable to find even a shred of dignity.

Monday morning, I started anaphylaxing at work. I had a little bit of a cold and was overtired and sore and generally sort of walking the line anyway. I walked up to the nurse’s office and gave myself IV meds while she took my blood pressure. “It’s 88/60,” she told me with wide eyes. I didn’t want to epi at work because then they would have to call an ambulance. I knew the IV Benadryl and steroids would keep me stable for a bit so I called my mother. At the age of 30, I called my mother to come get me at work because I was too sick to get home safely. The nurse emailed my boss to tell him I went home sick, which was for some reason a lot more mortifying than it should have been. My father and cousin had to go pick up my car later. It was embarrassing.  It felt undignified.

Then, later on that night, my dog threw up. I completely lost it. I throw up most days, often multiple times. If it doesn’t all get into its intended receptacle, I just clean it up. No big deal. But these last few weeks have been grosser than usual as pertains to my GI tract and I am so sick of cleaning up shit. I couldn’t deal with it. I just hit a limit of grossness and indignity in my life sometimes and it’s like I can feel my self worth just leeching away from my soul into the air around me.  It’s a perception thing and it’s so individual.  I know how strange it is to some people that I don’t mind being transparent about my life, the external signs of my internal illness visible to the world, but sometimes am upset about needing help.  I know people think it’s strange.  But it’s not my problem, and it’s not my responsibility to behave in a way that makes people comfortable with my illness.

Someone posted this week about a “friend” who was upset that they joked about their illness. My response was something like, “That guy’s an asshat, it’s not your job to act how he thinks sick people should act.” And it’s not. I don’t keep my central lines uncovered because it makes some statement about illness. I keep them uncovered because I genuinely can’t be bothered. It’s just not who I am to care.

But I care about my disease, and I care about the life I can’t have because of it, and sometimes, it’s too much. Some days I am tired of cleaning up vomit and emptying bags of my own waste and cleaning blood stains out of my clothes. Do not mistake my resoluteness for apathy.

This ability to move forward, to not be upset about mundane things – it is a learned skill, not a natural acceptance of the terrible reality of chronic disease. We are just trying to find grace in life. We are just hoping to navigate through the rough pockets with some autonomy and a little bit of dignity.



I have spent a lot of my professional life using microscopes. There is this rhythm you get into, when you do it a lot; lifting the edge of the slide out of the book with a gloved fingernail, pulling back the guard to slide the glass into place, spinning the fine adjustment back and forth with your fingertips. Sitting taller to look through the eyepiece into the tiny world below. Looking closely to see the ways you may have changed it.

The process of putting a sample on a slide and staining it can change it, sometimes even if you’re careful. Things look desiccated if you dry them too fast; elongated and distorted if you compress the sample. The dye sits heavy in some places and doesn’t wash off completely. When I look at a slide, I’m not looking at a sample. I’m looking at a sample that I changed in some way. These changes can be misread if not careful, because once I make them, they blend right into that tiny world. They are artifacts of my actions, some damage left behind by the process of being examined.

I spent most of last week in bed. My GI tract felt like I had swallowed lava. I had abdominal neuropathy that felt like electrical shocks spiderwebbing out from just below my xiphoid process. I was tired, weak and foggy from the anesthesia. I slept a lot and watched Netflix and did work from the relative comfort of my bed. These symptoms are not really so much from masto so much as they are from the procedure. Anytime I have a procedure, anytime I take medication, anytime I change my life to accommodate my disease. It leaves a lasting change not from the disease itself, but from the treatment of it.  It leaves an artifact.

I have had several surgeries. I have had hundreds of imaging tests. I have had so many scopes I literally don’t know how many scopes I have had. Every day I take handfuls of pills, infusions, injections, push meds.   This week I am acutely aware of the damage I have sustained by virtue of being treated for my disease. My mast cell medications bring my already slow GI tract to a dead halt. But of course the alternative is that I don’t treat my disease – and of course that’s worse. Right? It’s worse, right?

I know it is worse. I know that I will never live safely without meds. I in no way mean to imply that I am stopping treatment. It’s just getting really hard to know what is from my disease and what is from the treatment. It’s getting hard to know all the ways I have been altered by the experience of living with mast cell disease.

I feel more and more the toll this constant need for medical care is taking on me. With my accessed port, my surgical scars, my ostomy,  I myself am becoming increasingly damaged by this process. I am becoming an artifact.

The speed of falling apart

I saw my GI mast cell specialist today.  I have not been looking forward to this appointment.  I find that whenever the shit hits the fan with my health, it is always him telling me things I don’t want to hear in the small exam room at the end of hall. 

I am having major GI issues.  I am nauseous.  I vomit up most of what I eat.  I am reacting not just to food, but to the actual process of eating.  Beyond this, I have had a major change in lower GI symptoms.  I am bleeding from multiple places and spending a lot of time in the bathroom.  My abdomen is swollen and sore again.  If I lay back, I can literally watch myself digesting. 
We went through all my symptoms.  I told him about my endocrinologist appointment and filled him in on some conversations with my immunologist.  He examined me and palpated my sore abdomen, could feel that my colon was swollen. 
“Your problem is proliferation,” he said.  “If you started with two million mast cells, now you’ve got a hundred. Or more.”  I know.  I didn’t have anything helpful to add.  I really hate when I can’t pull useful more information out of my brain because it doesn’t exist. 
I already have a good surgeon, so he agreed to talk to him and get back to me on who wants to order what.  I will definitely need another colonoscopy with biopsies, at the very least, before they decide what to do for surgery.  He called my GI distress “incredible troubles.”  I laughed when he said it.  “Your troubles, they are incredible,” he clarified.  “A lesser person might not do so well.” But I didn’t feel like I was doing well today.  I wanted to go to sleep, quiet and numb, for as long as I could. 
I have said several times that this has been a strange year.  I feel like I can’t express what I mean by that properly.  While I have gotten sicker this year, I have at the same time found an increasing sense of peace.  I feel like I am helping people, and that was only possible because I am sick.  I learned about mast cell disease because I am sick, and I met all these people because I am sick, and I like this life, that I have because I am sick.  All of this is a side product of being sick. 
I skyped with one of my best friends tonight.  “I feel so guilty because I love what I do and I love all these people but it’s all because I’m sick and I don’t want to be sick anymore,” I cried to her.  I had a good long cry.  It was one of those days. 
But in the dark moments, when it feels like my soul is trying to swallow itself whole, I remember this year, and how as time goes on, I somehow feel less and less at odds with my disease.  I somehow feel the anger subsiding, feel this overwhelming calm as I learn how to live in this body each day. 
This year has been weird.  I am self actualizing at the speed of my body falling apart.


I scanned Astoria’s medical records today to send them to my vet.  As I was removing the papers from the scanner, I caught the name of her previous owner.  For some reason I can’t really explain, I decided to look this woman up. 
I saw pictures of Astoria as a puppy, with captions that clarified some of her history.  She was indeed rescued from a Southern shelter as a very young puppy.  Story lived with this woman until the spring of this year, when she felt she could no longer keep the dog and planned to give her to a shelter.  Astoria’s trainer offered to keep her until a suitable owner was found.  I brought her home last month.  I am in her fourth home in two years.
Every time I go out, Story thinks I am never coming back.  She hangs her head and follows me around when she can tell I am leaving.  After I’m gone, she pulls down the covers on my bed and lay in my spot.  If I’m home and there is a closed door between us, she paws at the door and whines. She wants to be close to me all the time.  Every time I come home, her body vibrates with the intensity of her relief.  It is strange for me to think that she is still wondering why this other woman never came back. 
She is triggered by odd things and it frustrates me that there is this history I don’t know.  She lives around these limitations, but she is still scared.  She does not believe that I will return until I do.  I think she will eventually trust that I am her person forever and I will always come back.  I think someday her past will not hamper her spirit.
My health has been bad for so long that it started to feel like my body didn’t have any good days left in it.  I woke up this morning typically nauseous and sore.  I took a handful of pills with my coffee before disconnecting my overnight infusion from my port.  I knocked all my makeup off its shelf and was gearing up to fight through another difficult day.
As I was walking out the door, I realized I wasn’t nauseous anymore.  It was a cool and breezy morning and it smelled like frost.  I went to work and had a really pleasant and productive morning.  I had forgotten my lunch so I took a chance on a salad from a restaurant down the street.  I ate it at my desk in case I needed IV Benadryl.  But I had no reaction.  I felt totally fine.
I worked a full day and got a lot done.  I was able to share with my coworkers the success of a child on midostaurin, a Novartis clinical trial drug for Aggressive Systemic Mastocytosis.  They were so excited to hear the personal impact of one of our drugs.  After work, I got a Pumpkin Spice Latte at Starbucks and took the train home.  My train was delayed for twenty minutes in a train tunnel for some reason and I didn’t even care.  I didn’t have any bone pain or joint pain.  I had no headache.  I wasn’t short of breath.  I wasn’t flushing.  I wasn’t bowel obstructed.  I wasn’t nauseous and I hadn’t thrown up all day.  I was still a little sore from the port being placed but it wasn’t bad.  I walked between stations rather than switch lines, drinking coffee as I navigated the sunny Boston streets.  It has been a long time since I walked around my city without having to sit down every few blocks.
When I came home, I found that Story had unrolled my yoga mat and was literally doing upward facing dog on it, so I thought, why don’t I do some yoga?  So I unrolled my other mat (because Story was still laying on the other) and did a good 40 minutes of yoga for the first time in a long while.  I brought her out to the yard to play with Harry while my friend came over to give me a massage.  And of course, that was super pleasant and I felt very relaxed when she was done.
I took Harry for his usual ten minute walk around the school yard and as the first stars were coming out, I walked down to the beach with Astoria.  For once, she wasn’t pulling me all over the place and was happily killing a stick as we walked.  We walked the length of the beach in the chilly night air and when we got home three miles later, I felt tired but otherwise fine.  I drank my can of Coke while reading a paper on mast cell biology.  I took a hot shower, which has recently become a lot more pleasant due to no longer having to cover the PICC line.  When I face into the water, I just hold a face cloth over the accessed port.  When I’m done, I just wipe it off with a towel.  It is seriously the greatest.
I took my night pills and opened Netflix on my computer after crawling into bed.  As I looked through new arrivals, I saw a documentary I have been wanting to see.  I put it on and pulled out my other laptop to write this as I snuggle under my heated blanket.
It is now after midnight, so I’m no longer worried that I will jinx it by saying: I had a perfect day.  I somehow, after all this time, and all this pain, had a day where mast cell disease did not affect my life at all.  I had a day with a really great Cobb Salad and yoga and a walk down the beach and a massage and getting to remind my very hard working colleagues on behalf of the mast cell community that what they do can save lives.  I am optimist because I don’t think there’s any other way worth being, but I have to admit that I was doubting whether or not I would see a day like this again.  Sometimes you get what you need. 
Someday Astoria will have a perfect day, too.   Someone will bounce a ball off the ground for her for hours so she can catch it and then a dog will play chase with her somewhere where she can roll around in the dirt.  She will get to pull all the stuffing out of a stuffed crocodile.  Then she will eat several cookies, and when I go to work, she will know that I will come home. 
We both live with these damaged spirits, but I’m starting to believe that maybe they don’t have to be damaged forever.  Because when I have a day like this, I realize it’s still there, as full and as vibrant as it ever was, and I know at once that it is inconquerable. 


Once I hit puberty, I was a fat girl.  I wasn’t morbidly obese, but I was overweight and it was obvious on my short frame.  This was not something I hated about myself, and it wasn’t until college that I felt uncomfortable with my body, but it informed my later years.  The experience of being overweight (and therefore mocked/ridiculed/generally viewed as “unfortunate” or “unseemly” or “lazy”) has affected my ongoing relationship with myself.
In 2007, I lost 40 lbs by training for the Breast Cancer 3-Day.  I also lived alone and worked a lot, on my feet.  I was committed to training, but also still had the privilege of a largely functioning body.  I was tired and had some joint issues, but it was more occasionally annoying than anything else.  Most importantly, I had time and stamina.  I could walk 10 miles a day, in the sun, in the heat, without any fallout. 
My weight fluctuated a little bit for the next few years, until in 2009, when I lost my hearing.  My neurotologist wrote out a long, high dose steroid taper and within a month, I had gained over 20 lbs.  In 2012, after a serious effort (working out 6-8 hours a week for several months), I lost 10 of those pounds. 
This was the point at which I realized that there was some fuckery afoot with my weight.  Like no matter what I ate, or how much I exercised, my body would not lose any more weight, and especially not around my swollen midsection.  A few months later, I had my ostomy surgery and in the weeks after that, I lost 10 more pounds.  The swelling and squishiness was gone.  The proof was in the pudding.  My mast cell disease and its subsequent inflammation were keeping me swollen, and squishy, and fat. 
Fast forward several months and a prescription for high dose steroids was being slid across the desk to me.  “I don’t want to do this again,” I started, but I knew I basically had no other play.  So I took them.  And two months later, I had gained thirty pounds. 
I am still on steroids; very low dose, but still on them.  As I have stepped down the steroids, I have lost some weight, but I am still 20 lbs over where I was.  I walk a lot (10-15 miles a week), and do yoga as I’m able, but my body has taken a serious beating this year.  I got a PICC line placed in March, which meant no weight bearing with that arm, and that eliminated most strenuous forms of exercise I can safely do.  I can’t do cardio.  I couldn’t swim with the PICC.  Now I have a port, and I can’t do any exercise for at least five days.  I’m forever being told not to exert myself while also being reminded that being overweight causes me a lot of problems. 
I have almost no control over the way my body looks.  I don’t mind having a colostomy and a port, I really don’t.  But I do mind that being overweight means that people judge me for being “lazy” or “unhealthy” or “making bad choices.”  I don’t know why anyone would ever comment on a person’s diet or general fitness, but it happens to me, so I’m sure it happens to you.  People are always like, “Oh, anyone can do [insert name of cliché fitness trend],” or “Your problem is that you drink soda,” or whatever. 
Are you kidding me, people?
Are you fucking kidding me?
I think my problem is that I have a rare, severe, life threatening disease that is destroying my body.  I think that’s my problem.
I cannot eat your stupid diet food because it’s full of artificial sweeteners and garbage.
I cannot do cardio because it will cause me anaphylax. 
I cannot do most other types of exercise because my body fucking sucks and has failed me repeatedly.  And the fact that it is fat is the least of the ways it has failed me. 
I throw up a lot of what I eat.
I drink one can of Coke a day.  I will probably do this every day until I die.  And you know what?  That’s 140 calories my body needs, because while you’re thinking about how much less I should be eating, I am not getting the amount of calories or vitamins or minerals that my body needs.  And frankly, for all the shit I have to put up with on a daily basis, a can of Coke is the least of what I deserve.
I don’t like being inactive.  I don’t like lying in bed and needing to sit frequently.  I don’t like feeling weak. 
There are some days when I look in the mirror and think that can’t be me.  I am so tired of living in this shell that doesn’t even look like me.

Last days here

I have a lot of flaws, but one thing I am is fair.  I have always seen the world the same way: balanced in all things, if you wait long enough.  It seems to me that life is just a series of interconnected decisions, a closed system; that if you had a lot of bad, you would have a lot of good to balance it out, to zero the sum.  Part of the difficulty of being sick is that, in the back of my mind, I am waiting for it to balance and it never seems to.  In the quiet moments, it leaves me disappointed and confused.
Life gets a lot less confusing when you realize that even if it balances, it is not fair, and that sometimes things happen without a reason.  It is much less confusing when you accept that sometimes, no matter how hard you fight, life breaks you in a way that can’t be fixed.
I have been trying for a while to remember a particular day: the last day when I was healthy.  It’s hard because every time I think I have identified the window in which it would have taken place, I am reminded of some previous strange illness or reaction that looks decidedly like masto.  I remember my back injury when I was 13 and the bizarre subsequent neuro issues.  I remember breaking out in hives from eating salsa and thinking for years that I was allergic to tabasco, chili and cayenne.  I remember sudden, severe abdominal pain as a child and burning lungs.  The truth is that I lived my last day as a healthy person so many years ago that the memory is lost, and I never even knew it. 
My disease has changed this past year.  It used to be that I would have sick days and then they would pass and I would feel better, normal.  Now I have bad days and normal days, except now on my normal days I am nauseous and flushed and in pain.  Like so many things about my life, it is hard to isolate exactly when it became this way, constant and more pervasive.
I cherish these normal days, so wonderful compared to the bad ones.  In the dark of night, I fear they will end forever someday.  What will I do, when they are all gone? 
I worry that maybe this feeling of transience I experience now is a sign of this happening.  I am afraid that maybe I’m living the last days of this stage of my life, and when it is gone, I will miss it.

A long, long way

This weekend, one of my oldest friends got married.  The wedding was about three hours away.  My mother rented a Mustang convertible, I packed all my various medical supplies and a couple of dresses and we drove up on Friday night.
“Can you ride with the top down?”  she asked, excited.  I thought about it.  I thought the sun might make me feel gross, and it was very hot out.  But it isn’t every day that you get to drive around in a convertible so I figured I’d give it a shot.  I put on sunscreen and sunglasses and away we went.  It was very Thelma and Louise.
I felt gross on Saturday morning, but I didn’t really care.  I loaded up on meds and tried to keep the nausea at bay.  I put on my dress and braided my hair.  I crossed my fingers that I got through the day without vomiting indiscreetly or needing epinephrine.  And I did.
The bride and her family have been close to me and mine for over twenty years.  She and I grew up together.  She and her mother both told me how glad they were that I made it.  They knew how sick I had been, and that making the trip was hard on my body.   So often people don’t understand how hard things are for us that when people do understand, it means a lot. 
It was this month last year that I started having serious bone pain.  It was this month last year that one of my doctors told me that he thought my CT scan had been misread, that my spleen looked swollen to him.  It was this month last year that I lost the semblance of health I had been holding onto. 
It was this month this year that I drove to my friend’s wedding three hours away in a convertible on a hot summer day.  It was this month this year that I went to the wedding and didn’t need epi or IV meds while I was there.  It was this month this year that I reflected on how far I had come while driving home from the White Mountains.  There has been a lot of struggle, but there have also been a lot of good days, and some really great ones that I’ll never forget. 
One of the things about being sick that healthy people don’t experience is how satisfied and accomplished you feel when you are able to do something important in spite of your illness.  I was exhausted and in a lot of pain when I got back to the hotel last night.  But I was also very happy that I had been able to be present for such an important day.  I was proud of myself and my body for pulling it together.
You don’t get a choice in being sick, but you do get a choice in where you place your energy.  A lot of the time, it goes to mundane things, cooking, shopping, laundry.  But every once in a while, I save up and blow it all on something big.  It will take a few days to get back to my baseline, and I took a lot of extra medication, but some things are worth it. 
I can live with this if I can still do the things that are worth it.  Having mast cell disease doesn’t matter when you get to be with someone you love while they have the happiest day of their life.  And when I look back, I can’t deny that I have come a long, long way this year.

Intersecting realities

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


I have this very clear memory that my mind revisits sometimes. I am jumping on a trampoline, holding hands, laughing.  The air is cool but the day is cloudless, the sun glowing and slung low in the sky.  I know I must be young because my hair is still blond corkscrews that stretch and wind as I jump.  

In my mind, this memory is synonymous with ecstasy.  I am weightless.  I am in no pain.  I am happy.  The vision is silent, like I’m watching it through a looking glass.  When I think about how I know it will all be fine, this is the memory my brain conjures for me, the one it plays behind my eyes. When I need to feel comforted and find peace, this is what my mind shows me.

This memory is an illusion.  I know logically that it’s false. We didn’t know anyone with a trampoline on a beach when I was that young.  I can’t remember whose hands I am holding because they aren’t real.  There’s no sound because it never happened.

I fell asleep at a decent hour tonight and woke up because my leg hurt.  Bone pain.  It had been better for months, and now it’s back.  It’s not a surprise.  We have been screwing with my meds, I knew my pain would be worse for a while.  It is prognostically meaningless.  It just means I’m still living in this body and it still has mast cell disease.

And I think, well, if that memory can feel so real and never have happened… then maybe this isn’t happening either. Maybe I’ll wake up now to my real life with my functioning body and all the things I have lost.

Your mind has incredible agency when it comes to protecting you.  It can shatter, solidify, suppress memories, rework them, whatever you need.  It really is a marvel.  

I think my mind built this memory from other true, good memories.  The trampoline is on Yirrell Beach, near where my cousins lived when I was young.  The dress I wear while I’m jumping is the one I wore in my first grade school picture. The sunlight, the salt I breathe in, the clear sky is every beautiful day I was ever grateful for.  There’s no sound because there’s no need to talk.  I have no worries, there is nothing I could need to know.  As for who jumps with me, it could be anybody.  It could any of the people I love and it would be an honor to hold their hands and celebrate together.  

I think my mind made this after I got sick.  I don’t remember when I started seeing it, but I know this last year I have seen it a lot.  I think my mind made it so that when things seem very dark, I can remember this and feel better.

I think this is heaven.  I think my mind is telling me that in many years, when I go to sleep and wake up healed and pain free, this is where I will be.

When I think too hard about this memory, I get this feeling in my chest that is reminiscent of nostalgia.  It feels like I miss something, but how can I miss something that’s not real? And if I went now, I would miss everyone here.  I never wanted to go.  

I only ever wanted to be here with the people I love.  Even if all of this is real.  Even if the rhythm is really the throbbing in my bones and not a trampoline.  

But I don’t think it is.  I think at the end of all of this, I will open my eyes and be weightless under that clear sky.  I think for now, I get to stay here with the people I love, and later, I will get to be free.


I have always been an outsider.  As a kid, I was a wicked nerd.  I read Star Wars books and was bored in school so I wrote fantasy stories.  I got moved to the smart class and people picked on me.  I wore weird clothes and mostly ignored people. 

I eventually started developing an identity through music.  I was a punk.  I am a punk.  And I belonged there, but there’s a caveat – it’s a subculture characterized by the fact that none of its members fit in anywhere.  It is a collection of misfits who like loud music and don’t belong anywhere else. 
I am fortunate to have a lot of close friends (who were also generally misfits in their younger years.)  But having friends is not the same as belonging to a community.  Like I have these friendships and I love these people and they love me, but there are some things about me that they can’t relate to.  Like being sick. 
When I found the mast cell community, I was ecstatic.  These were people who knew what I was talking about.  They knew about the weird taste I get in my mouth when I’m having a mast cell reaction.  They knew about the rash I get when I take a hot shower.  They got it. 
It’s hard though because once you find this community and you feel like you belong, when you can’t find anyone else who has had the weird blood marker you have or whatever, the loneliness you feel is swarming, engulfing.  It’s really not something I expected to feel again at this point in my life. 
There are a lot of things about my health that I keep off the general internet that would turn some heads.  In some ways, I am very different from most other people with mast cell disease.  While I feel that I belong to this community, it further reminds me that I am just never going to fit into a box.  I am always going to be an outlier. 
And you know what?  So are a lot of other people.  These diseases are so variable that it’s virtually impossible to ever find someone exactly like you.  The person I have found whose profile matches mine the best is 2 years old and calls her PICC line a tail.  She has a different type of mast cell disease than I do and has a disorder I don’t and I have a few she doesn’t.  So like I said.  It’s virtually impossible to ever find someone exactly like you.
My favorite thing about being a punk was going to shows and standing in the crowd waiting for the music to start.  You get this buzzing excitement in your head and your heart pounds and then when the music comes up, you’re screaming lyrics with a bunch of other people you don’t really know but who are your friends in that moment, and who don’t really fit in anywhere either but in that moment, you all belong together. 
It occurred to me tonight that the mast cell community is pretty much the same.  We are all medical anomalies who banded together under this spotted banner.  We are all misfits and sometimes for a little while, we belong together.