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my feelings

I’ll see you there

My Nana, my mother’s grandmother, died when I was five years old.  I remember my mother telling me that she had died.  I didn’t understand what that meant.  She told me that when the people we love die, their spirits stay close to us to protect us.  They become guardian angels.  I am grateful to my parents for many things, but one of the things that I most appreciate is the way they treated death.  It was never frightening or scary to me.  It was just a milestone, like marriage or retirement.  It was something everyone did. 

I liked this idea of their spirits being close.  I used to talk to Nana as if she was in the room with me.  I said good night to her when I went to bed.  I started first grade a few weeks after her wake.  I was very cool with the idea of her still being around in spirit, so I would draw pictures of myself doing regular things, except Nana was also there in her coffin, just keeping an eye on things.  It made me feel safe.
My first grade teacher was very creeped out about this.  She called me up to her desk and judged me with her wide eyes and unnecessarily slow speech.  I thought she was a fool.  Obviously her mother had not told her about how their spirits stay close to watch over us. 
My teacher told my principal, who called my mother in for a meeting.  They told her that they were worried about me because I thought Nana was watching me all the time.  My mother explained our family’s beliefs on that.  The teacher and principal were very concerned that I didn’t understand the difference between life and death, even though I had seen my Nana in her coffin.  They reiterated this concern repeatedly. 
“Look, my daughter realizes that my grandmother is not rolling around behind her in her coffin,” my mother told them.  She knew I understood what had happened.  Now she was the one judging.  I don’t know how the rest of the conversation went, but I’m sure it ended with my mother using some curt language and strategic eyebrow raising before leaving purposefully.  I get my righteous indignation from her.
My great-uncle and grandfather died a few years later.  I was fine with death by that point, but my sister was small and had been an infant when Nana died.  My mother read a book to her about a leaf named Freddie who learns about death when the leaves fall off the trees.  It was the first time a book made me cry.  When the winter came, Freddie fell off his branch and onto the ground with all his friends.  It seemed so peaceful.  It seemed quiet and like a relief. 
I told my sister about how the spirits stayed close.  We lay in bed together and talked to them.  We missed these people we loved but we didn’t think of death as something bad.   It wasn’t punitive.  It was just another part of life.  You left here and you went somewhere else.  And then your life continued, in this new place. 
My great-aunt was a therapist.  For my tenth birthday, she gave me a book called “Remember the Secret,” by Elisabeth Kubler-Ross.  It was about a girl who is friends with a boy who falls ill and dies.  But when he dies, they go dancing in the stars together and the little boy is not sick anymore.  It is not a sad book, not really.  I was so happy for the boy that he wasn’t suffering anymore.
I have seen a lot of death in my life.  I have literally watched someone take their last breath. I remember every person I have lost and I never fell out of the habit of talking to them.  I know that they are all close to me.  
I have knelt down and paid my final respects to people who died of old age after long happy lives, to those who died young of illness, to addicts who overdosed, to some who died by their own hand, to one whose heart suddenly stopped at the age of 13.  Some of these losses are harder than others.  Some of these losses are defining, in a before/after kind of way.  We had one of those in my family this weekend.   We lost someone young and my feelings are complicated and messy and it feels like my soul is an exposed nerve ending.  It feels like we will feel this loss forever.
I don’t know where you go when you die, and I won’t until it is my turn.  But I believe that we go somewhere, and that when you die, you are reunited with the people you love and you can all be together again forever. 
Every time I kneel down in front of a casket, I say the same thing: I don’t know where you’re going, but wherever it is, I will see you there. 
I’ll see you there.

Punk rock and fighting the establishment

I was never very good at conforming.  I was a weird kid.  I liked to read fantasy stories and comic books and was a geek before it was trendy.  I didn’t care very much about clothes or how I looked. Growing up, I had a few very close friends, and spent most of my time in school ignoring the people who teased me.  I didn’t fit in there and I never would. 
I first heard alternative music when I was 12 years old.  My older cousins were staying with us, and one of them was in a punk band.  I spent the summer between 7th and 8th grade listening to Nirvana, Alice in Chains and Pearl Jam.  This gateway drug led to the large scale consumption of metal, hardcore and punk and by 8th grade, I was wearing plaid skirts with ripped tights and combat boots. The music made me feel understood.   It was a role I had been waiting to assume my entire life.
I went to high school equipped with an arsenal of vulgar music and a bad attitude that carried me through college.  I went to countless shows in shady, filthy venues and listened to the Misfits with the volume up in the lab.  By the time I finished school, my hair had been black, purple, blue, pink and red, and I had accumulated a dozen piercings.  I wore punk rock like armor; it was easy to retreat into loud, angry music. 
Then I got older and I grew up and sold out in the way we all do.  I had various jobs and wore business clothes, went to conferences and dropped my (very thick, Irish working class) Boston accent.  I signed leases and bought a car.  I did charity work.  And I got sick.
Being sick makes you vulnerable in this long-term, uncomfortable way that I can’t compare to anything else.  It makes your world unstable and therefore you are unstable in the world.  It’s hard to be prepared when you don’t know what’s going to happen.  And when it happens fast, it’s even worse.
I was feeling pretty incapable the day that I was told I would never get my hearing back.  The person who told me was a well-known doctor at a world famous hospital.  He was an excellent researcher and had an awful bedside manner.  Without even looking up, he told me that I should learn to sign.  When I got upset, he shushed me.  (Pro-tip: Don’t ever shush me.)  He told me that he had patients with Meniere’s disease who couldn’t stand up without falling down and who would gladly be deaf in exchange for equilibrium.  He told me that there were patients in the hospital with cancer who were losing their hair.  Then he told me that I should be grateful that it wasn’t worse.
That was when I felt it.  It was the same feeling I got when I was 12 years old and first heard the Ramones.  Punk rock.  I was tired of doctors walking all over me and I was tired of crying.  And this doctor was going to be sorry.
I stood up and didn’t move for a solid twenty seconds.   I wasn’t sure what I was going to do.  The doctor turned and looked at me.  I walked past him, shut the door and sat back down.
“You don’t know me.  You don’t know anything about me.  And you don’t know anything about my life.”  This swell of anger at the establishment was rising inside me.  “You think I should be grateful for going deaf?  You think I should just get in line behind all those sicker people because since my hearing loss isn’t as bad as cancer, you don’t give a shit?  I don’t fucking think so.  If you think this is an acceptable way to treat people, then I’m sure you won’t mind defending yourself to the head of your department and Chief of Medicine, because I am writing a letter and you had better fucking believe they are getting copies.  I’ll call and make an appointment with someone who gives a shit that I’m losing my hearing.  I don’t ever want to see you again.  If you see me, don’t talk to me.  You fucking suck.”  I stormed out, in that really satisfying way where you can hear your own soundtrack blaring in your head.
I wrote my letters and got a few very frantic phone calls from the hospital.  They scheduled me appointments with other specialists and assured me I would never have to see this asshat again.  And I never did.
The next few years were exhausting and frustrating and sad, and maybe I was belligerent, but I wasn’t a doormat.  I wasn’t afraid of them anymore.  I got my punk rock back. 
There are some days when I think that my illness has defined me more than anything else.  But if you look closely, that’s not true.  More than anything else, more than a loyal friend, more than a know-it-all, more than a scientist, I am a punk.  I was born with a problem with authority and I’m not afraid of a fight.  Every cell in my body lives for rebellion.  It is the heavy bass undercurrent of my every action.  Every time I argue with a doctor or refuse to accept substandard care, Black Flag is playing in my head.  I have punk rock in my soul, and more than anything else, it armed me for this ongoing struggle.  It saves me over and over.
Last fall, when I started getting much sicker much faster and I wasn’t really feeling up to the challenge, I called an old friend and she dyed my hair bright red for me.  I went home and put on my Operation Ivy shirt and blasted the Pogues and Bikini Kill.  And I felt braver and ballsier and ready to not take shit from anybody.
And what’s more punk than refusing to let mast cell disease ruin my life?  Pretty much nothing.  That’s what.


I have seen several mental health professionals over the years.  In 2011, I was trying to break in a new therapist.  The first few appointments always go the same and are always exhausting.

“Have you suffered any life-changing losses?” she asked, voice neutral, note pad on her lap.  I listed the people close to me that had died up to that point in my life.  She made some notes. 
Later on, I mentioned that I was comfortable conversing in both English and ASL.  She asked how I learned to sign and I told her that I had lost most of my hearing.  “Oh, that is definitely a life-changing loss,” she remarked, flipping back a page to list it in the appropriate section.  “You can grieve the loss of health or a sense the same way you can a person.”  I had never realized that before, but of course she was right.  You can grieve any loss.
Grief is, for me, the hardest part of being sick.  It is also the aspect I find people are least likely to understand.  Our experience with grief is largely confined to the death of a person.  This grief can be huge, all consuming, but in many instances, fades over time.  Not always, but often, it is easier to remember a person without pain as time passes.  Even this familiar type of grief is uncomfortable for many to watch. 
Grief because of illness is completely different.  It is a distinct entity.  You don’t grieve because you are sick.  You grieve because of all the things you have lost, friends, jobs, opportunities.  You grieve because the life you wanted, and all the things you wanted to do, became impossibilities as you watched.  I talk a good game about my life.  I like my life.  I really do.  But there are things I wanted that I will never have because of my illness.  It’s an unpopular thing to say, but it’s the truth.  I will never have the life I would have if I hadn’t gotten sick.
The thing about this grief is that it cycles.  It’s not always present, and when it will return is not always predictable.  You can never deal with it enough that it goes away forever.  I go weeks, even months sometimes, without mourning the loss of the life I thought I would have.  But something will happen, often something very minor, and this darkness will bloom inside me, spreading further with every beat of my heart. 
I have been journaling for most of my life.  I reread them every so often, just grab a bunch of them and read them in bed.  It used to be soothing.  It’s harder now.  I was so intensely hopeful, so sure that I could do everything, have everything, be everything, that I sometimes have to stop.  Reading these pre-diagnosis passages is like looking directly at a solar eclipse – you know it will be swallowed up in darkness soon, and it hurts too much to watch. 
It gets easier as time goes on.  It happens less frequently, but still, it is.  My grief follows me, a sort of shadow self.  Even when the sun is overhead and you can’t see it, it is still there, waiting.  The sun can hide it, but it can’t make it a memory. 

We all have shadows, after all. 

Myers-Briggs Testing; or, the day I told my coworkers I was sick

Last fall, I took a Myers-Briggs workshop for work.  This event determined our Myers-Briggs Type ahead of time and then used several exercises to explain how we perceive the world and make decisions, compared with how our coworkers did so.  It classifies you are being one or the other in each of four pairs of preferences: extraversion vs introversion; sensing vs intuition; thinking vs feeling; judging vs perception. 

On the morning of the training, the woman leading the course handed out thick reports to each of us.  It revealed our results in explicit detail, and was unbelievably accurate.  My result was one of the most uncommon types, ENFJ.  I am extraverted, intuitive, feeling and judging. 
The ENFJ person is sometimes called “The Giver” in Myers-Briggs literature.  They address things primarily by how they feel about them.  More than any other type, they have excellent interpersonal skills, usually knowing the right thing to say in most situations.  They are empathetic, understanding and caring.  They are very honest and forthright.  They are especially good at developing talents in others, and do well in positions where they can lead and inspire.  Their main interests are giving love, support, and encouraging others.  They like to make things happen for people.  They are extremely organized, planning out everything in their lives well ahead of time.  They have a strong need for close relationships and will expend significant energy maintaining them.  They are very loyal and trustworthy. 
Because they are so good at handling people, ENFJs can be good manipulators, able to elicit desired reactions with ease.  Their motives are not usually selfish, but they can easily get under the skin of other people.  ENFJs tend to judge themselves harshly and to have deep, upsetting thoughts when alone, and to place others’ needs above their own.  ENFJs have strong values and opinions, but are likely to let go of a strongly-held view if doing so would serve another person’s needs.  ENFJs are not good at impersonal reasoning. 

We broke up into groups of similar attribute (all extroverts, all intuitives, etc.) to demonstrate the differences in how we address situations.  When we broke up in groups of thinking vs feeling, there were only two feeling people out of twenty.  We were given a scenario in which we had to cut some people from a planned trip, and asked to explain how we would determine who would be cut.  The thinking group had a very clear, logical decision tree.  We, the feeling people, also had a decision tree, but it was clearly based on helping people the most.  The thinking group wanted to send the most qualified people, who would best represent the company. We wanted to send the people who had never been, who would appreciate it the most, who might never get to go again. 

The reaction we got to this was largely incredulous.  Some people obviously felt this was a poor use of theoretical company money.  This exercise was very upsetting to me.  It upset me because my life often forces me to appeal heavily to this empathetic side of people.  It upset me because so often in previous situations, I had been refused opportunities because I was sick, and it didn’t make sense to give responsibilities to someone who was sick.  It upset me to realize that so few people thought that it was worth it to give a chance to someone because it would mean a lot to them. 
This specific exercise was the subject of a lengthy discussion at the end of the class.  One of my coworkers, a man I like and respect, was very curious as to why we felt the way we did.  We went around the table discussing our feelings, me feeling unsettled the entire time.  When it was my turn, I weighed my options and decided it was time to lay it all out on the table.  There’s never a good time to “come out” as a sick kid, and it seemed like it was time. 
“I have a rare, life-threatening blood disorder,” I said quietly.  A couple of the people present knew, but I had started having new, more severe symptoms.  I wouldn’t be able to hide it much longer.  I felt the flush rising on my chest but there was no going back.  “I know I don’t look like it, but I’m very sick.” I tried to choose my words carefully, both for clarity and for maximum effect.  “I think that it is a privilege to give people opportunities based upon the fact that it will mean a lot to them.  It costs you nothing to be nice to people.  Good will means a lot to people who are struggling.  And maybe for you, this is just a job.  But for me, it’s probably the last job I’ll ever have.  So I’ll remember kindnesses like that for the rest of my life.”
The instructor had mentioned earlier that people rarely change their Myers-Briggs type without a major life trauma.  This wasn’t my first Myers-Briggs test.  I had previously been ENFP, more spontaneous and adventure-seeking.  Every chronically ill person reading this knows that those behaviors become memories once you are diagnosed.
“I used to be an ENFP person, but then I got sick.  And now I have a plan and several back up plans for everything.  Someone mentioned earlier that it’s impractical to be a judging person, because you can’t plan everything.  I am prepared for everything, because I have to be.  I have to plan everything because it is the only way to keep myself safe.  If you don’t plan everything, probably nothing terrible will happen.  If I don’t plan everything, it could kill me.”   The room was silent.  Some of my coworkers looked stricken.  Some were crying.  “So when we talk about this stuff and how we make decisions, remember that these things aren’t abstract.  Every decision you make has the power to affect someone positively or negatively.  It’s your choice.  I just think it’s the better choice to always be positive, if you can be.”
This was the very first time I had decided to use the power of my story to positively impact the way someone viewed the world.  It was both empowering and terrifying.  Several of my coworkers came up to me afterward to hug me or tell me they were sorry I was sick.  A lot of them asked about my disease and I told them.  They cared about me and accepted me. 

Being around someone who is chronically ill often brings out the best, or the worst, in people.  It is rarely neutral.  One of the privileges I have in life is to work with people who have shown me an incredible amount of compassion and understanding.  “The other day I sent my friend flowers for no reason,” one of my friends told me a few weeks after the training.  “I thought about your ENFJ speech.” 

It made me smile.  They matter so much, these little things.

Broken heart

Emotional stress is my biggest trigger.  Not emergencies, mind you – I am good at reacting, administering, directing in an emergency.  I mean the type of emotional stress that can only come when someone who loves you wrongs you.  I can deal with people I care about minimally treating me poorly without risking anaphylaxis.  But when it’s someone very close to me, someone whom I love deeply, it is very dangerous to my health.

I got a colostomy in April of 2013.  My doctor expected that to resolve the majority of my systemic symptoms, as the long term bleeding and physical stress that necessitated the surgery were also triggering my mast cells.  His aftercare instructions were very clear: don’t lift anything heavy, eat a low residue diet, do not go anywhere strange, stay out of pain and do not get upset.  If I could do all these things, he expected my mast cell symptoms to subside considerably. 
I had five weeks of no mast cell activation.  I lost my swollen, pregnant midsection.  The act of sitting, walking, existing, was no longer inherently painful.  I had energy.  I was getting better. 
Six weeks after the surgery, my ex-boyfriend left me abruptly almost four years into our relationship.  We tried to work it out.  I think it might have been alright, but then we found out we had to move.  
We had moved into this apartment a year and a half earlier.  I was clear when we looked at the apartment that I didn’t want to move until I bought a house.  Moving is dangerous for me.  New apartments, with the possibility of hidden mold and environmental triggers, are dangerous for me.  I have true IgE allergies to several environmental allergens and exposure to any one of them can cause anaphylaxis. 
Our landlord knew this and reassured us repeatedly that we didn’t need a long term lease because he would never make us leave.  He lied.  When he told us we had to leave, I completely broke down.  “This could take years off my life,” I sobbed, dignity lost.  “I feel bad about that,” he muttered.  We were excellent tenants, he agreed, he just wanted his daughter to live there instead.  He didn’t care.  They never do.
The next day, I got a bowel obstruction.  The mast cell symptoms returned in force, all at once.  “I told you not to get upset,” my doctor said, as if I could possibly control any of this.  But I understood his point.  When you have mast cell disease, the ones you love can truly be your undoing. 

I ended my relationship for good in February.  I would rather be alone than be with someone who handles my illness so poorly, though this is no comfort when there is no one moving against me at night.  I wanted to stay, but I could no longer ignore the fact that the stress of trying to fix this had taken a very serious physical toll on me.  It wasn’t worth my life.  And my heart was already broken, anyway.

I have been through a lot, all things considered.  It has made me stronger, all of it, even the things I wish hadn’t happened.  Every time I am grateful for my steel will, for my ability to make hard decisions without hesitation, for my ability to not get upset every time my body fails me in a new way, I have to admit that it was the hard times that made me this way.  I can’t imagine surviving any other way.  But the wounds – those are real, too.
There are nights when I can’t sleep and start sobbing uncontrollably.  I press my hands against my chest, against the hardness of my sorrow.  I run my fingers along the edge and it is shaped like a broken heart.  It feels like being half awake and reaching for him, before I know where I am and that he will never be there again.  There is no physical pain on earth that can compare to the memory of a love that is no longer real.
My mother used to have a seashell in her bathroom.  When I was little, she would hold it up to my ear and I could hear the ocean.  I feel sorry for that shell now.  It remembers the sound of the waves but can never go back.  I know what that’s like.
They say you can’t die of a broken heart.  Maybe they’re right.  But years from now, when they open me up to see what happened, they’ll find glittering shards in my chest and know that they cut me every time I breathed.

On blind faith and believing things will get better

The very first person to recognize that I had a systemic disease was the doctor who performed my sinus surgery in 2008.  The previous June, I had gone on a three-week backpacking trip through Scandinavia and contracted a sinus infection I couldn’t shake.  In November, after several rounds of different antibiotics, I was referred to an ear, nose and throat specialist.  He took one look at my massively deviated septum (a casualty of my wild child teen years) and scheduled surgery to clean out my sinuses. 

He also advised that I contact an immunologist as soon as possible, as I was a 23-year-old in seemingly good health, yet had been unable to clear an infection for six months.  I set up an appointment and became an active player in a game I hadn’t yet realized I was playing.  The hunt for mast cell disease was on.
This doctor’s greatest asset was the longevity of his career and, owing to this, the fact that he had seen thousands of patients over the years.  “You remind me of this woman who used to be a patient of mine,” he told me during a follow-up appointment as he looked through the scope snaking into my sinuses.  “She looked so healthy, like you.  But something was wrong with her.”  He remembered the specifics of her case very clearly.  She had Hashimoto’s thyroiditis, like me.  She had hearing loss.  She had also required sinus surgery.  “She knew there was something affecting her whole body, but I didn’t know what it was.”  He had thought at the time that it might be an endocrine issue. 
This woman took on a mythical status in my imagination.  I hadn’t been convinced that what I had wasn’t just a collection of mild, treatable ailments.  But once I heard about this woman, I knew.  I knew that this wasn’t all a coincidence. 
I haven’t seen that doctor in years, but when I was diagnosed with mast cell disease, I called his office and left a message for him.  He called me back a few days later.  He remembered me and my collection of symptoms.  He was fascinated to learn that I had mast cell disease.  I asked about the woman, in case she had never received a diagnosis.  “Oh, she died some years ago,” he told me casually.  I was too afraid to ask how she died.  I don’t have any reason to think that it was from mast cell disease, or that she had even had it in the first place.  But the news that she had died, this woman I had never met, hit me strangely. 
There are so many tiny things that affect you when you have a disease like mine.  You feel an immediate kinship to anyone like you.  The emotion you feel can sometimes be disproportionate to the actual intensity of the relationships.  You take things personally.  You are acutely aware that you are different from everyone else.  You can’t freak out about the big things, so you freak out about the little ones instead.  You get very good at cataloguing the suffering.
But there is this other about being sick.  You see good in everything because some days you need all those little beacons of light to scatter the darkness.  Hope begins to feel like a religion.  Making plans, thinking things will improve, believing that you can still have the life you want – these things feel like acts of faith.  Every step that moves you forward is a prayer to the universe to let you have one more.  The act of staying alive feels sacred.  You have to believe it will get better.  There is no other way.
Many languages do not differentiate color in the same way that English does.  Several of them use the same word to refer to both blue and green.  I can only think of hope now as being brilliant against this dark horizon.  That’s how I feel when I plan my trip around the world, like I’m executing a divine will.   I don’t have any words for that, but when I close my eyes, the light it shines inside me is blinding.   

The doctor-patient relationship and the danger of self-advocating

I had an appointment with one of my immunologists yesterday.  I like this doctor.  We have an excellent relationship.  He has been with me through a lot.  When I met him several years ago, I didn’t know what I had but I knew my diagnosis was wrong.  He didn’t know what I had, but he believed I had something and was willing to try some unusual choices.  Some of them did nothing.  Some of them worked.  The ones that worked gave us information that ultimately led to me being diagnosed with mast cell disease.

At the same as I was being seen by this doctor, I was also being seen by a doctor, a rheumatologist.  This rheumatologist thought I had rheumatoid arthritis and did not think I had anything else wrong with me.  This rheumatologist went so far as to state that all my (anaphylaxis) attacks were due to anxiety.  He thought I was a hypochondriac.  He wasn’t alone.  I was seeing several specialists at the time, and all of them thought I was generating abnormal lab results by being upset about life.  All of them except this particular immunologist that I saw yesterday.
About two months before I was diagnosed with mast cell disease, I stopped believing that the disease was damaging my body worse than the many medications I was taking without a solid diagnosis.  I was tired.  I was mentally unable to fight anymore.  It is so hard to keep believing something is true when so many people who should be able to find it insist that there is nothing there.  I decided to discontinue all of my many medications in a last ditch effort to identify what I had.  Predictably, I anaphylaxed and went to the hospital to be monitored and tested for a few days.  But no one recognized it was anaphylaxis, so they didn’t find anything.  I gave up and went home.  I told my immunologist that I was done and I meant it.
Two weeks later, the week of Christmas, he called me.  He told me that there was one more person he wanted me to see.  I told him I didn’t want to see anyone else.  That I meant it when I said I was done.  He told me that he thought this person would know what I had, and that if nothing came of this one appointment, he would leave me alone.  And because he had believed me for so long when no one else did, I agreed to go. 
That appointment happened on a Tuesday four weeks later.  It is the appointment where I was diagnosed with mast cell disease.  I never saw that rheumatologist, or any of those other specialists, again. 

I was very lucky.  I was lucky that I didn’t die from anaphylaxis prior to diagnosis.  I was lucky that my family and friends (most of them) continued to believe me when it was unclear if I was right.  I was lucky that I had even one doctor who believed me.

This is not always true for people without diagnosis.  This is not always true for people with diagnosis.  There is a very real tendency by medical professionals to ignore or downplay things they do not understand.  There is a desire to always be the most informed person in the room.
I interact a lot with providers who don’t know very much about mast cell disease.  I explain a lot of things to them.  Some people are grateful for the knowledge.  My stoma nurse recently said to me, “I love you because I know you’ll tell me exactly what you need.”  Sometimes they appreciate my directness.  Sometimes they refuse simple requests for no reason other than the fact that I had the audacity to know about it when they did not.  No one likes to be told what to do, but for people like me, there isn’t always another option.  I can’t assume that they will eventually arrive at the appropriate conclusion when they don’t understand my disease.
Once they get mad, they are not interested in providing me the best care anymore.  They think I’m a know-it-all and they tolerate me at best.  “Smart people like to feel smart,” the floor intern told me during my recent admission, as explanation for why the resident was frustrated when I understood my symptoms better than she did.  “I’m smart, too,” I reminded her. 
I am not a medical doctor.  I was too sick to go to medical school.  Before I knew I had mast cell disease, I spent years researching various diseases that I thought I might have.   I have worked in medical research for thirteen years, worked in pharmacy for ten years, and have both undergraduate and graduate degrees in the biological sciences.  Additionally, I have direct access to mast cell fluent people through my job.  These experiences have taught me a lot about medicine, physiology and pharmacology.  If I sat the med school admission exam again, I would do well.
When I was diagnosed, I spent months doing nothing but learning mast cell biology.  I got books, read papers, emailed researchers, called doctors (some of whom even called me back.)  Even still, I read papers about mast cell disease and related topics on a daily basis.  I do not know everything, but when it comes to mast cells, I know this shit cold.  But that only helps me if my doctors see me as participating in my care and not making outrageous demands or insulting their intelligence.
Yesterday, my immunologist and I discussed whether or not I needed to go to the hospital after self-administering epinephrine.   I am anaphylaxing a lot these days.  I regularly lose four days of my week to intense pain and borderline anaphylaxis, in that “safe to not use epi if I drink Benadryl constantly, but very uncomfortable” stage.  He agreed that when that happens, I can give myself epinephrine and IV Benadryl at home and not go to the hospital if things stay stable.  This is a huge relief.  He knows that if I feel unsafe, I will go to the hospital.   He knows this because after years of seeing me, he understands that I can be trusted to make decisions like this for myself. 
Many people don’t have doctors like that.  It makes me so mad to see people talking about how their (non-mast cell aware) doctors won’t increase their antihistamines, prescribe mast stabilizers, learn about their disease.  It makes me so mad when my friends are told by specialists that they “don’t know about their disease,” as if they shouldn’t be expected to educate themselves beforehand.  It makes me so mad when doctors ascribe any problem you have to mast cell disease when we so frequently have comorbidities.  It makes me so mad that we have to argue for the things that keep us safe when getting tests, procedures or surgeries.  It endangers us and forces us to understand our disease in order to prevent injury, something that isn’t always possible. 
There is no remedy for this beyond education and a new paradigm in medicine that involves active patient participation.  I worry about my friends who don’t have a good relationship with their doctors.  It makes me extra grateful for people like my immunologist. 
Last night as I was drawing up my IV Benadryl, I literally thanked him out loud.  I am one of the lucky ones, and I know it.

On losing my hearing

I have this philosophy about my illness, that I’m not my illness and I’m not my body.  It keeps me sane a lot of the time.  It is easier to see it as something separate from me, an antagonist.  It is easier to not feel complicit in all this.

I started feeling that way when I lost my hearing.  I lost it in 2009, and never got it back.  I have no hearing in my left ear, some in my right ear.  The hearing in my right ear fluctuates.  I stopped seeking technological interventions when I was accused in 2011 of Munchausen’s by a specialist and referred to a psychiatrist.  The psychiatrist agreed I did not have Munchausen’s.  I never tried to get a hearing aid again. 
A few short weeks after the appointment with the psychiatrist, I was diagnosed with mast cell disease.  “We’re not sure why, but a lot of people with this disease have trouble with their hearing,” the doctor agreed kindly.  I cried when he told me.  It felt so final.  A tiny part of me had always hoped that once I was diagnosed, the treatment would give me back my hearing.  But it didn’t, and it won’t.  I am Deaf.  I will be Deaf for the rest of my life.
It is impossible to describe how it felt to lose my hearing.  It was like slowly bleeding with no way to stop it.  There was panic and anxiety.  I couldn’t focus on anything else.  And then eventually, it stopped.  I was damaged, and I moved on. 
The thing about your hearing is that you use it for everything.  I had never even noticed.  Very early on in my Deaf life, I looked both ways and stepped into the street.  A friend pulled me out of the way just before a car hit me.  I had seen the car, but because I couldn’t hear it, my brain told me it wasn’t moving.  It was a jarring realization that I used my hearing to keep me safe, and now it was gone.  The whole world felt different.  It felt alien.
Losing my hearing represents the first time in my life that I couldn’t make my body work through force of will.  In 2009, I was having joint pain, tiredness, fevers, rashes.  I had a few inaccurate diagnoses.  In spite of that, I could still make my body do whatever I wanted, even it hurt.  I could overcome the pain.  I could not will myself to hear. 
It was also the first time I had to demand accommodations.  I had to tell people to look at me when they spoke.  I had to get an earpiece to talk on the phone.  I had to request interpreters for medical appointments.  It was my introduction to self-advocating, and that has served me better in my adult life than any other quality.  I am not afraid to fight. 
I have adapted over the years to the point that I barely notice my Deafness.  I can hear on the phone if it is quiet; I sign well enough to use a video phone.  I watch the tv closed captioned, use a vibrating alarm clock and a lamp turns on in my living room when you ring my doorbell.  Learning to function as a late-deafened adult was hard but not impossible. 
In many ways, my hearing loss is hard to talk about.  It is still a wound, one that comes raw with too much touching.  The entire experience affected me and changed me in ways I could never have expected.  It was a loss I felt more acutely than anything else that has been taken from me.  It was the point of no return, after which I would never recover the health I had previously had.  My life is divided into two epochs: before and after I lost my hearing. 
But I owe a lot to my hearing loss, I think.  It forced me to learn another language, to become a part of a culture I had known nothing about.  I have made friends I would never have made otherwise.  I found out who in my life really cared about me.  It made me think differently about my health.  It made me realize that deafness was not a disability, but an attribute, a facet of who I am.  It made me realize that I could still have the same life I had before, if I wanted to work for it.
I recently went on high dose steroids to treat my mast cell disease.  It was a treatment I had been given for my hearing loss, one that worked, but was discontinued due to terrible side effects.  I woke up in the middle of the night a few months ago, and I heard a strange noise.  It was sort of a soft ticking, a sound I didn’t recognize.  I turned on the light and tried to locate the source.  I eventually realized it was the fan.  It had been so long since I had heard one that I had forgotten what it sounded like.  It was like being visited by an old friend.  My dosage decreased and this brief glimpse of my old life vanished.  The blades spun silently now. 
My life isn’t better or worse for being able to hear a fan.  It is a reminder of both my damaged body and the ways I have learned to live with it. 

Not a war

People use battle terms when they talk about disease.  “Keep fighting!” they say.  They talk about health in terms of “winning” and “losing.”  They call my life a “battle.”  War makes it easier to be merciless.  You want to win at all costs.  War turns the enemy into a faceless horde, and the consequences of your actions aren’t important.   You can scorch the earth if you know that eventually this will end and life will spring forth from the ground again.  You can imagine a future in which the scars have been consumed by nature, this history swallowed whole and invisible to a new generation.

In the beginning, I thought like that, too.  My disease was my enemy.  My medications were weapons.  In learning more about my illness, I was arming myself for the future.  Sometimes I was advancing; others, retreating.  Every day I made tactical decisions in my fight to overcome these obstacles.  I was a soldier, drafted into a conflict I didn’t want to fight, but doing it nonetheless.
But this isn’t a war.  This is my body.  It tries to kill me, but it also allows me to walk at night, balance in Crow pose, drink coffee.  It is sick, and it is damaged, but it is the only body I’ll ever have.  There is no known instance of a person with no mast cells surviving.  They heal my wounds, thin my blood and protect me from infection.  It pains me to admit it, but I need my mast cells. 
It’s harder to envision this as a war when you know you will never win.  I will never be able to kill off all my mast cells; I have to live with this faceless horde.  I can only appease them and mitigate my damage.  When you think about this every day, it begins to change you.  You might still see your body as an adversary, but you grudgingly find ways to work together.  And not often, but sometimes, you find that by doing this there are things you can do that couldn’t before.  In some ways, you can learn to play your disease to get everything out of your body that you possibly can.
My disease has caused me to accept my body.  It is scarred and misshapen and swollen, but it is still here.  Looking in the mirror is like visiting a monument to the resistance.  We’re outmatched, but we try anyway.  Sometimes it is better to work with your enemy than to fight them on principle.  There is a kind of quiet honor in that. 
Some days it is still a battle.  But most of the time, it is just my life, living in this body, trying to work with it.

The memory of pain

“It’s so hard to forget pain, but it’s even harder to remember sweetness.  We have no scar to show for happiness.  We learn so little from peace.”  -Chuck Palahniuk, Diary
I’m a medical scientist.  At a conference a few years ago, one of the doctors was recounting a phenomenon we are all familiar with – the patient who swears that their current illness is the worst they have ever had.  It’s not, though.  “They just forget how bad it is,” he surmised.  They are lucky, these normal people.  They get sick a few times a year, so infrequently that the light of their health overwhelms those dark spots. 
I’m not like that, and I don’t think I ever have been.  I’m very grateful for my good days, but when I look back over the landscape for the last few years, that’s not what stands out.  I remember the happiness and enjoyment of those days, but not the physical feeling.  It’s hard to commit the sensation of “less” or “better” to memory; it is merely a fact I can regurgitate when my doctors ask me.  It evokes nothing in me physically. 
I remember pain more than anything else.  I feel like this says something about me as a person, but it’s true.  I spend a lot of time with my pain, after all; it changes and evolves, but never really leaves.  It started in my hands and feet, arthritis that I feel as soon as I open my eyes.  Then my other joints, stiff and sore with motion, throbbing when still.  My lower back, that feels like a seam along which my body will break when I bend.  My lower abdomen, my entire GI tract that burns and twists.  The throbbing in the long bone of my thigh, the twisting in my chest.  The bright red sunburn of anaphylaxis all over my skin.  I have become skilled at cataloguing it, at knowing what is normal and what is new. 
Whether I like it or not, I have learned a lot from my pain.  It has forced me to prioritize my life, to actively pursue the things I want and to eschew what I don’t.  It has forced me to really want things, or to forget about them.  My pain makes me tired and irritable; it guarantees I only spend time with those people who are deeply important to me.  I never do anything just for the sake of doing it.  And in many ways, that is a blessing.
It used to bother me when people talked about being grateful for their illnesses.  I’m not grateful for my illness.  I would rather not have it.  But I like my life, and I like who I am, and my disease is part of the shaping forces responsible.  I am more empathetic now, more organized.  I expect less of people and am let down less.  I deal with disappointment better.  I accept that I cannot do everything I want to.  I suppose I’m grateful for those things, even if I would rather have come to these realizations by another route. 
Sometimes I’ll have a couple good days in a row and I think to myself, maybe this is when it gets better.  Maybe this is when things start steadily improving.  Maybe this is when my pain subsides and I get back the life I had where I could stay out late and drink alcohol and run a 5K and do yoga every day. 
Realistically, that’s never going to happen.  I will never be healthier than I am now; there is too much damage.  But every once in a while it feels like a possibility, and it doesn’t erase the memory of the pain, but it does soften it, just a little.