I had this life once

Seattle, redux

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

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

The person I never wanted to be

“I wonder if I’ve been changed in the night? Let me think: was I the same when I got up this morning? I almost think I can remember feeling a little different. But if I’m not the same, the next question is, ‘Who in the world am I? Ah, THAT’S the great puzzle!’”
– Lewis Carroll, Alice in Wonderland
My mother ran a daycare in our house when I was growing up.  When we would play Disney princesses, the other girls would quickly claim their favorite characters while I tried to find one who was suitable.  “I want to be Alice,” I would say.  I’m such an Alice.  “This is only for princesses,” the girls would whine.  I would choose someone else.  It was easier than fighting.
We don’t always get to be the people we want to be in life.
Growing up, I wanted to be a doctor.  I did all the things I was supposed to in order to achieve this goal – get a science degree, work in health care, take the MCAT, get recommendations.  I did everything I was supposed to.  But when it came time to apply, I was too sick to do it.  This was years before I was diagnosed and was having increasingly strange issues.  I did not want to be in a situation where I had to decline admission because of health issues.
So I went to grad school instead.  I graduated both college and grad school young, and I figured there would be time to get healthy and go to medical school later.  Time is so enormous when you’re young.  It stretches out before you, overwhelming in its enormity.
And then one day you wake up and you’re 30 and you never got healthy enough to go to medical school.  There is this idea that you can do whatever you want in life.  That’s not really true.  You can do whatever you want if you execute a series of decisions in a certain time frame. 
It’s so hard to look back sometimes. 
If there is any universal truth about chronic illness, it is that it changes you fundamentally.  You can never again be the person you were before you got sick. 
In some ways, I am grateful for this fact.  There are a lot of things that I didn’t like about myself when I was younger.  There are still some things I don’t like, but I am proud that these number far fewer.  Being sick has made me more compassionate, less judgmental and more patient.  Of course, I’m not always like this.
In 2012, I went to Seattle for my friend’s wedding.  While there, I got very, very sick.  I was fortunate to be travelling with a very old and dear friend who took care of me for the duration.  I’m most fortunate that he put up with me.  I am not fun to be around when I’m in pain.  The desperation you feel when you’re suffering eliminates the mental route that takes you through manners and social graces.  I was so heinous at the end of that trip, I am mortified looking back.  Knowing that he forgives me and that we are still close friends does not negate the horror I still feel.
People say a lot that chronic illness molds you into a better person.  I disagree.  I think it splits your very nature in half: your best qualities amplified on your better days, your worst apparent otherwise.  It is like sharing a body with doppelgangers, light and dark, never knowing which one will be behind your face.
Some people feel that because it is part of the disease, it is acceptable to lash out at those around them.  And though I do it too, I disagree that it’s excusable.  I don’t want it to be okay for me to be mean to my friends and family.  I don’t want it to be an inherent part of a relationship with me.  I am responsible for the damage I wreak, even if it’s not my fault.
Whether or not these behaviors are driven by illness, we are still responsible for the people we become.  And though I never wanted to be this person, I am, and I am responsible for that. 

Free

I walk a lot.  I walk in short bursts, 5-10 minutes every couple of hours.  I walk with fast, confidant strides, music blaring, around my block, maybe two blocks.  I walk even when my joints are sore, when my bones throb, when I am short of breath.  For those few minutes, I am not sick.  I am just me.

It takes me a few minutes to recover after these walks.  As the night grows later, I am increasingly exhausted by these brief moments of exercise.  I lay on my couch and am too tired to get up.  I want something to drink but my legs feel impossibly heavy and I have that warm shudder starting up my spine.  Even simple tasks become insurmountable.  In these desperate moments, I recognize my body for what it is: a prison.  These shackles have been on for so long that I barely notice their weight.

You can get used to anything.  It feels in some ways like this has always been my life, that I have always had this broken body.  It seems impossible that I could ever just go for a walk without consequences.    

I want so much to believe in an afterlife where I will be healed.  I want to know that after all this pain, there will be this oblivion and that I will be whole again.  This is all I have sometimes.  

Tonight is one of those nights when I am so tired that my eyes hurt but I cannot sleep.  My body is struggling against itself and I am so tired of this illness that it makes me cry.  I have to believe that it can’t go on forever.  I have to believe that there is an end.  

I just want to be free.

Ask me anything (kind of)

Someone asked me recently if I would do an Ask Me Anything, Reddit-style.  The answer is no, because there are things I don’t want to put out on the internet at large.  I am a pretty open person, but there are things about my health and life that I don’t feel comfortable sharing. 

I do recognize that a lot of people who read my blog/see my posts on Facebook probably don’t know very much about me as a person, so I figured I’d do a post about me.  I’ll answer some questions I’ve gotten at the bottom.
I was born and raised in Boston.  For college and grad school, I went to UMass Lowell, where I got a really excellent biology education.  I strongly urge anyone looking for a serious science school with affordable tuition to look at UMass Lowell.  My undergraduate degree is in Biological Sciences, my graduate degree is in Biology (concentration in Microbiology.)  I planned to go to med school, and took my MCAT, but was too sick and too unstable.  It is still my dream to go, but I realize that’s unrealistic. 
My parents are both from Cambridge.  My mother, Gail, works as in Operations for a non-profit.  Her background is in childcare, and we had a daycare in our house when I was growing up.  My father, Mike, worked in the automotive industry until he had a heart attack in 2008.  He is now disabled and does not work.  My sister, Kristin, is five years younger than me and has degrees in Mathematics and Economics from Boston University.  She works for a large financial corporation in Boston. 
I am very close to my parents and sister.  I live three houses down from them and spend a lot of time at their house.   I have a large extended family including several nieces who always cheer me up.
I have a dog named Harry who is eight years old.  He is extremely handsome but not very bright.  He enjoys walks and cookies.
I also have a rabbit named Sadie B, who is going to be nine in the fall.  She has a terrible attitude and is currently chewing a hole in my wall as I type this.  We are not friends right now.  She likes lettuce and electrical wires.
I put myself through college by working in a pharmacy.  At the time I worked there, having a federal license enabled technicians to compound, so I did a lot of that.  I worked in pharmacy for almost ten years.  It was often frustrating, but I learned a lot about health care, insurance and medication in that job. 
After grad school, I worked in Research and Development for a small biotech company that developed diagnostics for blood stream infections.  I helped to develop tests for bloodstream and urine infections that are now FDA validated or EU CE marked. 
I now work in the biomedical research division of Novartis, a very large pharmaceutical company.  Novartis makes some drugs that are used to treat mast cell disease, as well as a drug in clinical trials for mast cell disease.  I do a lot of operations work now due to my often needing to work from home.  I learned how to do some coding last year and have done a lot of that.  I like coding and it’s easy to do from home, so it’s a good fit.
How long have you had mast cell disease?
I was diagnosed with mast cell disease in 2012.  I had been actively seeking diagnosis since 2008, and had been sick for a few years before that.  It has gotten progressively worse and more disabling for me.  I am fortunate that some of the top mast cell doctors practice in Boston so I am able to get excellent care.
How are you able to work if you are so sick?
I live alone and still work full time, which a lot of people ask about.  I have a lot of help.  I can still drive, but only if I don’t take pain medication, so I generally prefer to have someone else drive me.  My father usually drives me to work, which is about twenty minutes away.  I either take the train home, someone gives me a ride, or I take a taxi, depending on how I feel. 
How are you able to live alone if you are so sick?
My friends and family help out with household chores, like food shopping and cleaning, as I often don’t have the energy to do these things.  I am also able to give myself IV meds/epi at home without going to the hospital if I have anaphylaxis.  My doctors are comfortable with this because of my lab background, which means I am trained in keeping things sterile while accessing my PICC line.  Mostly I am able to live alone because if I call someone and need help right away, they are going to come.  If I can’t get in touch with whoever I called, I’m likely to get in touch with someone who will help. 
Why do you have a PICC line?
My IV access is terrible.  Over the years, frequent blood draws and IVs have caused hardening of a lot of my veins.  There has also been “mast cell deposition” at the site of access, which feels like sand when you rub your finger over it.  This means that it is easy to get a needle into my veins, but you often can’t get blood return or fluid in.  The PICC also enables me to give myself IV therapies at home. 
Was it hard to learn to access your PICC line?
No.  I watched once and did it.  I have many years of lab training to back me up, so I am very comfortable with sterile technique and syringes.  I also have a good understanding of the medications and the procedure and how to troubleshoot it if necessary.  I realize it is not always so easy for everyone.
Can you do a video about your PICC line?  My daughter is getting one.
Sure. 

If your family is Irish, why is your last name Klimas? 

This is my grandmother’s married name from a previous relationship, which became my father’s last name, and so on down the line.  The name Klimas is Lithuanian.  We are not Lithuanian.
Do you get Novartis drugs for free?
I have very good insurance and yes, I get Novartis drugs for free.  Yes, I realize how lucky this makes me as a mast cell patient. 

Does anyone else in your family have mast cell disease? 

My sister has had anaphylactic reactions to specific medications.  She has been tested for mast cell disease and is negative.  She does not have ongoing mast cell type symptoms.  My father has a hematologic disorder and autoimmune disease, but has been negative for mast cell testing, including bone marrow biopsy. 

Do you do research on mast cell disease?
No, but I know people who do, and they are often able to answer questions I can’t find the answer to. 

Are you Christian?  Do you mind that I pray for you? 

No, and no.
Has any of your research been published?
Yes.
You talk like a teacher, were you one?
Yes.  I taught microbiology at UMass Lowell while in grad school.  (This is how I paid for it.)  I also taught ASL classes out of my home for several years.  I like to teach.  Explaining things helps me understand them better. 
What do you miss the most from your life before getting sick?
I miss not having to plan every aspect of my day in advance.  It’s exhausting.  Also being able to try new foods without risking anaphylaxis.
What food do you miss the most?
Seafood.  I was actually saying yesterday that I’m going to pick a day this summer, premed the day before, give myself some IV Benadryl and have some.  I will probably need epi, which I have accepted.  I grew up eating seafood all the time and I miss it so much.
Do you speak Spanish?
Yes.  I have been speaking Spanish for almost twenty years, mostly with native speakers.  I generally speak with a Puerto Rican accent and slang, but am familiar with other dialects.  Castillian Spanish is the hardest for me.  Last time I took a proficiency test was in college and I was rated “near-native fluency.”  In college, I took literature, history and politics classes taught in Spanish.  When I lost my hearing, it became harder for me to understand spoken Spanish.  It has improved, but it’s still not always easy for me.  I read books in Spanish a lot.
Are you married?
No, and I’m not in a relationship either.  I also have no children.
What’s the best advice you’ve ever gotten?
I think this was masto related, but the best life advice I’ve ever gotten is to not do your favorite hobby as your job. 
I love languages and have been taking classes in various languages for pretty much my entire life.  I was originally a Modern Language major in college and switched to Biological Sciences after getting this advice.  I took three years of Italian and three years of German in college.  I took French in high school, four years of Russian over the course of my life, three years of ASL as a kid, a semester of Mandarin, a semester of Ancient Greek.  I spent a few years learning Arabic with the help of a native speaker.  I’m taking Hindi now.  My Irish is quite terrible, but I can exchange pleasantries.  Same for Danish.
What is your biggest dream?
To travel around the world.
Are you a microbiologist or molecular biologist?
Both.  There’s a lot of interplay between the two.  The diagnostics I helped develop were molecular tests, but my training is in microbiology.   
What is your favorite movie? 
Nightmare Before Christmas.  The Crow.  I have a lot. 
What is your favorite TV show? 
I love a lot of TV shows.  All time favorite?  Probably Battlestar Galactica. 
What are your hobbies?
I like playing games (card games, etc.)  I read a lot.  I also watch a lot of tv and Netflix now.  I enjoy hiking and rock climbing, but can’t do them anymore.  I walk a lot.  And I write.  Obviously.
If you could change one thing about your life, what would you change?
I don’t really know how to answer this.  If I could regulate my sleep, that would be great. 
Can you exercise?
This year has been kind of a disaster health wise, making exercise really hard.  Yes, I can, but it’s very difficult for me.  I walk a lot, at least 2-3 miles a day.  I am starting to do yoga again after a long hiatus for various reasons.
Have you gained a lot of weight from your medication?
Yes, in particular from long term high dose steroids.  I weighed 145 lbs when I started and now weigh 170 lbs after weaning down to 5mg prednisone.  It always takes me years to get back to my normal weight and I really hate steroids.  None of my other meds have caused weight gain.
I heard that long term high dose steroids are bad for you, and that doctors who prescribe them don’t know what they’re doing.  Why were you on them?
This is an example of things I’d rather not project onto the internet, but I get asked this really frequently so I’ll give you a pseudoanswer.  Long term high dose steroids are only worthwhile if the benefits outweigh the risk.  I was sick enough that my doctors and I felt it was worth it.  I do not regret doing it, even though weaning has been a nightmare, because I think I would have spent a lot of those months in the hospital otherwise.  Mast cell disease is not the only chronic disease I have, and the steroids were necessary to control all of the things happening in my body.
I feel bad asking you questions all the time, do you mind when people ask you questions?
Not even a little.
What things really bother you?
Rudeness and unfairness.  I am a very fair person, and it bothers me a lot when I give people the benefit of the doubt and they treat me poorly in return. 
It seems like you still have a lot of friends, how did you manage this?
My friends are amazing people.  I have lost a lot of friends, including some close ones, but I am lucky to still have a lot of very close friends.  A lot of them have been on this journey with me since the beginning. 
Is your colostomy permanent?
Yes.  I decided I did not want to try to reverse it and risk needing another surgery to reverse the reversal.  It improves my life.
Are colostomies common with mast cell disease?
I wouldn’t say they’re common, but I’m certainly not the only person I know who has mast cell disease and an ostomy.  Everyone’s disease process is different, so the need is very individual. 
Was it hard to adjust to having a colostomy?
Not really, for me.  I was so relieved to be able to go to the bathroom that it made the transition easier.  It depends I think on whether or not you feel it improves your life.  Sometimes before I shower, I catch myself in the mirror and see my stoma and it makes me feel kind of weird.  I am also not easily embarrassed and never have been, so the idea that my colostomy will fart in a meeting is not disturbing to me.  It’s just funny.  And yes, it has happened.
How do you know so much about mast cell disease?
A lot of this is having connections to researchers and also having really good journal access.  When I got sick, I spent months learning this stuff.  I took immunology in grad school and always pretty current with recent happenings in that field.  I literally read about mast cell disease every single day.  So I guess I know this stuff by brute force.
You seem very happy, do you take antidepressants?
I take doxepin for its antihistamine properties, but it is an antidepressant, so yes.   I have taken Effexor in the past, but not for years.  I get upset and mad and sad about life.  I just don’t do it all the time.  Having appropriate dosing of mast cell meds helps a lot.  I don’t really have an explanation for how I can be happy other than I like my life and think I’m lucky to have it. 
Can you travel?
We’re about to find out.  After a two year moratorium on air travel, I am flying to Seattle next month with my best friend to visit one of our dear friends.  To achieve this, I have to ship twenty pounds of medical supplies ahead of me.  Literally.  I also would not be able to do this if I did not have IV meds and IV access. 
What’s one piece of advice you would give to someone with mast cell disease?
Don’t worry about it.  It’s going to be fine, and if it’s not, worrying about it’s not going to change it.  I know this is easier said than done, and I certainly worry sometimes, too.  But I honestly don’t most of the time, and maybe that’s why I’m happy.
 
Have more questions?  Ask them in the comments.

Stand up and fight

Last fall was a low point in the turning wheel of my life.  I was getting sicker and my life was increasingly unstable.  I spent hours on the phone every day arguing with my insurance company about paying for testing, infusions, medications.  It was obvious to me even before the test results came back that my disease was affecting organ function worse than before.  It was becoming harder to envision a life that looked like the one I wanted to live.  My multitude of medications weren’t managing this anymore.  I was watching the life I had worked so hard to build be laid to waste by this disease.

I was mentally exhausted and so tired of fighting.  Every minute was a struggle.  I was so tired that I no longer cared what happened.  In the worst moments, I would whisper, “I just want it to be over.”  I didn’t want to die.  I just didn’t want to do this anymore.  I just wanted to stop fighting and go to sleep.  No one wanted to hear this.  If it happened to me, after all, it could happen to them.
I made it through this winter, with its bone pain and emotional upheaval and endless hours of doctors, hospitals and insurance.  Every day, I had to decide if I wanted to give up and just accept what would happen.  I would decide to keep going in the morning and if it felt insurmountable that day, I would tell myself that I could stop the next day.  But I never did.  I kept fighting, not because I wanted to, but I didn’t want to let everyone else in my life down.  Sometimes that is enough.  Sometimes we just some reason not to stop, and it doesn’t even matter what that reason is. 
There will come a day when I stop fighting, when I just accept that this is as good as it will ever get.  On that day, I will not argue with my doctors anymore, or send them papers on protocols I want to try, or write letters for them to sign so I can send them to my insurance company.  I will stop trying to stem the losses piling up in my life and just let them go.  I will sleep.  On the worst days, this seems like consolation.  It is comforting to know that at some point, I will be able to rest.    
A lot of us are struggling hard right now.  Really hard.  I am anaphylaxing weekly, sometimes more than once.  I am sleeping for 18 hours at a whack and get winded walking for a few minutes.  I have friends in the hospital, friends with sick kids, friends who are dying.  I know that some of them wish, like I did last fall, that it would just be over.  I know that some of them feel the strain of this endless struggle. 
But this is not the time.  This is not when we give up.  It’s not always this hard.  IT’S NOT ALWAYS THIS HARD.  If there comes a time when you can’t fight anymore, you will know.  Until then, you can’t give up. 
Every day this week, when I was done brushing my teeth after puking, I looked into the bathroom mirror and said, “Not today.”
Don’t give up.  You can do this.  You are doing this.
Stand up and fight.

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.

Grief

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.