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June 2014

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. 

I am not there. I do not sleep.

There is this party line that people don’t die from mast cell disease.  I’ve sifted through a lot of data in search of statistics on this topic.  I haven’t found a lot that I find reliable.  Some of the numbers are derived from one or two studies.  Some of the data is really outdated.  If it existed before tyrosine kinase inhibitors, I don’t think it’s particularly useful.

“You are a resource for a lot of people,” someone recently told me.  “You write about dying and it scares them.  You can’t be scaring them.” 
I appreciate what she’s saying.  But mast cell disease is already scary, and people are already scared. 
I have a great friend with ASM.  He has been through several types of chemo and is coming to the end of his options.  Last week, he was told that he was dying.  It was a reality we both recognized months ago. 
I’m sick of hearing how rare ASM is in response to questions of life expectancy.  People die from ASM, and these people don’t matter less because they are the exception.  These are people, with lives and families and jobs.  Their stories matter.  They do not deserve less attention because their prognosis scares you. 
You learn a lot about people from their secrets.  The things we are afraid to speak lest we give life to them say so much about us.  Over and over, from the deepest recesses of their minds, people bring forth to me this same fear: that they will die from mast cell disease.  I feel like the collective consciousness of this community sometimes.  I keep everyone’s secrets, and so I keep this one, too. 
This one is easy, because I have the same secret.
Most people with mast cell disease will not die from it.  But some of them will.  Some will die from aggressive disease and some will die from organ damage and some will die from anaphylaxis. 

When they die, there is this immediate need to identify the ways in which they are different from us.  We cloak ourselves in these disparities, armor against the same fate.  Grief ripples through the community, a few days of remembrance and then they are gone.  These people exist only in our memories, where they dwell forever as incarnations of a struggle we hope we won’t lose. 
Then time goes on and someone says, “Death from mast cell disease is very rare,” and everyone agrees, but all I can think about is those people inhabiting those memories and that maybe with a few changes I could be them. 
Nobody lives forever.
I have never thought of Death as a person.  Death is a place, one we all must visit.  Like a strange customs office, or the shaded part of a woodland path that children invent ghost stories about.  Not bad in itself, just bad because it is unfamiliar.  Bad because those places are inevitably lonely, and we feel lonely when we think about them. 
Losing someone hurts.  Knowing you will lose someone – that hurts differently.
When I was in middle school, my class went to a cemetery to take gravestone rubbings.  I don’t remember where it was, but I remember the rubbing I took.  It was very tall.  It marked the grave of a child and had angels at the top corners.  It had the most beautiful poem on it. 

Do not stand at my grave and weep.
I am not there.  I do not sleep.
I am a thousand winds that blow.
I am the diamond glints on snow.
I am the sunlight on ripened grain.
I am the gentle autumn rain.
When you awaken in the morning’s hush
I am the swift uplifting rush
Of quiet birds in circled flight.
I am the soft stars that shine at night.
Do not stand at my grave and cry;
I am not there.  I did not die.
When I think about my friend telling me he is dying, I whisper to myself, “I am not there.  I did not die.”
Most people don’t die from mast cell disease. 

Losing my religion

When my great aunt was in her twenties, she was in a terrible car accident.  She drove through a guardrail and landed on the train tracks twenty feet below, where she was found hours later by the conductor of a train travelling that route.  She had two small children.  She was transported to Boston and was not expected to survive.

The family mythology says that my grandmother, her sister, went to church and told God that if her sister survived, she would go to church every day for the rest of her life.  My great aunt survived.  My grandmother is almost 80 and still goes to church every day.  Some of my relatives feel that she goes, not out of love for God, but out of a need to repay this debt her sister generated on survival.  It has created for my family a bit of an interesting dynamic where religion is concerned.

We were raised Irish Catholic, but in the laziest possible way.  We had Christmas and Easter and went to CCD.  We did not read the Bible or attend mass regularly.  Confession made me feel ashamed of insignificant wrongs, and absolution never improved it.  Kneeling down and saying the responses to the priest didn’t feel important.  I thought churches were pretty, with their dark vaulted ceilings and the sad Stations of the Church, but they all smelled like obligation.  There was a lot of being quiet and sitting still and not understanding why we were doing any of this. 
I asked a lot of questions in CCD, and a lot of the teachers couldn’t answer them.  As I got older, often the priests couldn’t answer them either.  For me, the Catholic religion seemed so severe, so punitive, that spending any time in it quickly became stifling.  I read the Bible several times and found contradictions.   I believed in equal rights and birth control and I couldn’t get a satisfactory answer why these things were shameful.  I started resenting Catholicism and everything it stood for.
When I was 15 years old, it was time to get confirmed in the church.  The night of confirmation, I told the Cardinal that I didn’t believe that Jesus was the son of God.  He told me that I had to get confirmed if my parents wanted me to and it didn’t matter if I believed in Jesus or not. 
An hour later, this same man laid his hand on my head and confirmed me as a member of the Catholic church.  His name was Bernard Law.  Three years later, I saw him on the news.  He was charged with covering up numerous molestations by priests in what would become the Boston Catholic sex abuse scandal.  I remembered the priests kissing his ring and the constant admonishments by the church staff to be quiet and not make trouble.  It made me sick.  My already flimsy connection to the church was severed.  I would never identify as Catholic again.
In 2008, my father had a severe heart attack and went into a full arrest while driving a car carrying my entire immediate family.  I gave him CPR on the street while we waited for the ambulance to arrive.  At the hospital, they asked if we wanted to see a chaplain.  My mother asked for a priest.  He came and we prayed together.  I still knew the words but they had long ago lost their meaning. 
In the last few years, Catholicism has undergone a bit of a facelift.  I like this new pope.  I like that he says that everyone needs to treated kindly and that he says it’s not canon for priests to be celibate.  He is personable and funny and humble.  I like that he agrees that unbaptized children don’t go to Purgatory.  But there are still so many things I don’t believe. 
Finding the mast cell community has changed me in a lot of ways, some of them unexpected.  One aspect of this community is that many of these people are deeply religious.  Not in a superficial way, but in a real way.  A lot of these people really love God and believe that He can heal them, even as their bodies are failing.  It takes a lot of faith to believe that.  It inspires me.
People sometimes ask if they can pray for me.  I always say yes.  I’ll take all the help I can get.  I watch these people that I respect give their troubles to God and they feel unburdened.  And if it comforts people, isn’t it worth something, regardless of what you believe? 
I believe that people should be kind to each other.  I believe that they should help each other when they can.  Helping people feels like praying to me.  It comforts me to think that after everything that has happened to me, some good could come out of it.  And that’s a big part of religion, isn’t it, if you read the stories?  To learn from the parables, to do good?
In the very hard moments, I sometimes feel this presence near me.  I don’t know what it is, but it is soothing.  And if I don’t know what it is, couldn’t it be God?  Or the power of the universe?  Or is it all the same, with many different names?
I don’t always know what I believe.  But watching these people I care about be faithful while they struggle – that feels spiritual to me.  It feels, maybe, a little holy. 
Peace be with you.


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.

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?
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.

On invisible illnesses and being judged

I saw something on Facebook earlier this week that really rubbed me the wrong way.  It was a picture of a wheelchair user standing to get something off a shelf in a store.  The caption was something like, “There has been a miracle in aisle 5.”  The obvious implication was that the woman didn’t really need the wheelchair.

The overwhelming majority of people with chronic illness have no obvious external signs noticeable by the casual observer.  This is why they’re called “invisible.”  This causes people to generally assume that the people around them are healthy and able-bodied.  It’s frustrating because chronic illness is so prevalent, but that’s the reality.  So let’s look at how this affects my life.
If I am dressed and my arms are fully covered, I look completely normal.  When I tell people that I am sick, the first thing they say is always, “If you hadn’t told me, I would never have known.”  I believe it.  I have always been very active so even on days when I feel miserable, it’s not unusual for me to walk a couple of miles.  This contributes to the perception that I am healthy, or at the very least not as sick I say I am.
I got into a nasty repeat anaphylaxis crisis in May.  I spent a week largely in bed.  I was also having POTSy problems with my blood pressure and heart rate being poorly regulated.  When my doctor came by to see me, he warned me that I had to be very careful about my physical activity level or I would end up in a situation where I would faint every time I stood up.  For the first week, I could only stand for 10 minutes.  I increased this by 10 minutes every week until I got to an hour, after which time I could resume normal activity. 
Do you know how difficult it to not stand for more than 10 minutes a day?  You use that time just walking to and from the bathroom.  It was so disruptive and obnoxious. 
You know what I kind of wished I had during that six week period?  A wheelchair.  (And accessible housing, etc, but just go with me here.) It would have enabled me to move around my apartment while being safe.
There is this idea that people who have a disability lose 100% of the related ability.  I first realized this when I lost my hearing.  A lot of hearing (culturally hearing) people had no idea that deafness is a spectrum.  Profound deafness, in which there is no hearing at all, is rare.  Blindness is the same way.  Mobility as well.  A lot of people who use mobility aids still have some ability to stand or use their legs.  If I had used a wheelchair for those weeks, it would have had nothing to do with the function of my legs. 
It’s also important to realize that when you are chronically ill, you are forever getting instructions from doctors on what you can’t do.  I am a very compliant patient.  I don’t always agree with a plan, but once we have one that I am comfortable with, I adhere to it.  That said, in that first week when I needed to get the charger for my computer in the other room and my ten minutes a day were used up, I did not drag myself along the floor on my belly.  I stood up, walked to the other room and got it. 
Living with chronic illness is about mitigating risk.  But for those of us who live with it, it’s sometimes worth it to just do something we’re not supposed to.  Spending extra time and energy exercising alternative options can be detrimental if we don’t have much time or energy left.  How much of a pain in the ass something is going to be can be an influencing factor.  I deal with this mostly with my hearing.  Sometimes using a video phone is cumbersome.  I can understand ASL pretty well, but it means I have to really focus.  If I’m tired, I’m probably going to just have a phone conversation and ask the other person to repeat things if I don’t hear it the first time.  Conversely, lip reading sometimes gives me a serious headache.  On those days, if you’re not signing and it’s too loud for me to hear you, I’ll catch up with you tomorrow.
And some days, I just don’t give a fuck.  On those days, I walk around my neighborhood with my headphones on, sit in direct sunlight and eat chicken parm subs.  I suffer for it, but that’s my choice.  I am allowed to choose to do things that are bad for me.  Like standing up for four seconds to grab something off a shelf when I am using a wheelchair.
A lot of chronically ill people make decisions based on how much attention they will have to deal with.  People staring at me has never bothered me, but that’s not true for everyone.  I don’t feel the need to cover my PICC line most of the time, but it guarantees people will stare at me and speculate. 
I had a lot of problems with my right leg after I broke my back as a teenager.  I had a handicapped placard for a few years in my late teens/early 20’s because I walked with a crutch and my leg always hurt a lot.  Sometimes I would pull into a handicapped parking spot, get out of my car without my crutch and limp into a store to get something quickly.  Often, people would feel the need to tell me that the parking spot was for people who were really disabled.
When people make assumptions like that about me, I have two options: educate them, or walk away.  But there’s an inherent problem with being forced to educate people in this situation – it eliminates my right to privacy.  I don’t generally mind telling people about my health issues, but I mind BEING MADE to do it, if I otherwise wouldn’t.  I share things about my life because I choose to.  If I didn’t, no one would have a right to know these things about me.
Let’s say I am borderline anaphylaxing and any unnecessary movement could push it over the edge.  Now let’s say I’m also sitting down on the train and refuse to give up my seat to someone who is pregnant.  People would immediately judge me as being lazy and rude.  Why should I then have to tell complete strangers the reason I need to sit?  When they’re unlikely to believe me anyway?
I do not have to explain my choices.  I have a right not to be judged because my illness isn’t written on my skin for everyone to see.  I’m getting really tired of people like me being mocked in internet memes.  If you think this is funny, pay me a visit.  I will clear all the medical supplies, IV bags, syringes and pills off of a chair so you can sit and talk with me about it. 
This is my life.  It is not a joke.  I am not a joke.

My people

One of my best friends had a sudden medical emergency a few months ago.

“This is hard because we don’t know how to deal with it,” one of our friends told me. “With you, you’ve always been sick, so we expect that you’ll be sick.  But we don’t know how to deal with this.”
I knew what she meant.  I felt the same way.  “I like it better when I’m the one who’s sick,” I answered.  I feel like if I have to live with pain and vomit and the shudder of anaphylaxis that it should shield everyone I love from serious illness.  I would take all of it, for everyone, if I could.  But of course, that’s not how it works.
I have talked a lot recently about how important the mast cell community is to me.  I am so lucky to have all of them in my life and I would never exchange those relationships for anything.  I am grateful for them every day. 
The flip side of belonging to a community like this is that you gain a lot of sick friends.  On a weekly basis, I hear that someone is in the hospital again, or someone needed multiple doses of epi, or someone had an increase in their serum tryptase.  Every time I learn something like this, the utility of my experience living with chronic illness is apparent.  I can take pretty much any medical news without flinching.  No amount of bad blood work or organ damage fazes me.  I am glad that I can support these people when they are having a hard time, as they have supported me.
While all my masto people are special to me, there are some that I feel a particular kinship with.  I call them my people.  I have girlfriends who text and call often, a constant source of bidirectional support. There are a couple of little girls who I feel a sort of responsibility toward.  There is a teenager who reminds me a lot of myself.  I worry about them, but I take comfort in the fact that I am still here, and so I believe they can make it at least as far as I have. 
And then there are the people whose disease is more advanced than mine.  When they suffer, it feels like looking into a crystal ball and seeing my own future.
I have been fortunate to meet someone whose journey closely parallels mine.  We talk on the phone and tell bad, dark jokes about our health and laugh.  It is a very bare relationship.  We experience the turmoil and sadness and anger in the same way.  The gift of companionship on this road cannot be underestimated.  Some days, it is all you have.
Finding out that any of my people are in trouble is physically painful.  It feels like some clawed creature tore the flesh off my chest and my heart is exposed and unprotected.  I worry about them all the time.  It is the only thing I can do.  There is a lot of wait and see in the mast cell game.   There is a lot of “we’ll see how this turns out.”  You never know how people are going to emerge from this latest crisis.  Even if they aren’t in mortal danger, they could lose their house, their job, their marriage.  I feel all these possibilities acutely. 
One of my people is in a world of trouble right now, several thousand miles away.  I was talking to someone about him today.  She noted that it is a double-edged sword, belonging to a community like this.  You both have validation and support and also are guaranteed to witness the suffering of those who are close to you.  She is right.  But if that is what I have to take on in order to have these people in my lives, it is worth it. 
I love you guys.  I mean it.
It is an honor to share your pain. 
It is an honor to worry about you.  I will never stop. 
This pain it evokes in me, I am protective of it.  It reminds me how much I care about you.  It reminds me that this journey we are all taking matters.
I hope that we all live long and happy lives in spite of mast cell disease.  But if that doesn’t happen, I will be with you, until the very end. 
Stay strong.


I talk a lot about the hard stuff.  Mast cell disease is a bummer.  Some days are easier than others, and I still enjoy my life, but it’s still a bummer.  Everyone with mast cell disease deals with insurance frustrations, physical and emotional stress, and feelings of isolation and being misunderstood.  These things affect my life a lot, so I write about them.

But it’s not all bad.  And I don’t just mean my life, I mean the experience of living with mast cell disease.  So let’s talk about that tonight.
I sleep really poorly, which generally means I’m up all night and guaranteed to wake early.  When I’m working in the office, I always arrive early and have a pleasant morning getting organized before everyone else arrives.
I’m allergic (true IgE allergic) to dust, so my apartment is always pretty clean.
One of my goals in the last few years was to become a better cook.  When you suddenly find yourself with a drastically reduced diet, you get pretty creative with spicing and cooking techniques to give flavor to what you’re left with.
I am really good at yoga because of my hypermobility.  (EDS, not masto, but still.)
I am unbelievably organized. 
I feel like every day is a logic puzzle that I have to solve.  But I like puzzles, and when I get through my day and did everything I had to, I feel like I solved something.
I am direct at expressing my needs and concerns in pretty much all aspects of my life. 
I no longer get very upset about a lot of things that used to really bother me, like the weather or the behavior of other people. 
Chronic illness can also be really funny.  The ridiculous things my body does on a daily basis are comedy gold.  Anytime I interact with someone who doesn’t know that I’m sick, I’m pretty much guaranteed to walk away with a funny story. 
There is this amazing thing that you get when you are diagnosed with a rare disease – your community.  I was diagnosed for quite a while before I found mine, but now I can’t imagine my life without all of these people.  Even though we are different, we have taken this same core journey.  There is a lot of power in this common history.  There is such comfort in having someone say, “I know what that’s like,” and knowing that they do. 
The relationships formed by this camaraderie are very intimate and very intense.  You share your triumphs and your misery.  You say things and you’re not judged.  As time goes on, you suddenly find yourself with this ever evolving family of people who understand you and validate you.  They are your people.  They are the gift you get in exchange for all the hard stuff.
I have bad days, a lot more now than I used to.  When they come, it’s hard to focus on anything but the pain.  But then one of my people will reach out to me.  It is like having my hand held from across the thousands of miles between us. 
And just like that, I remember – we’re connected, and I can never be alone in this.

On sharing grief and “The Fault in Our Stars”

I read “The Fault in Our Stars” last fall.  It’s about a sick girl who falls in love with a boy and they have adventures and fall in love.  I had intentionally put it off for a while.  I tend to not like stories about illness, for the same reason I tend to get irritated watching science-based television shows: it’s hard to enjoy the story when it is so inaccurate.  A lot of my friends had loved it and felt that I would like it if I read it. 

The majority of books or other media with sick characters do not accurately relay the experience of chronic illness.  There’s a new show out about a reporter with cancer and the first episode was painful to watch.  That’s not what it’s actually like.  It’s actually like… life.  It’s like life with medications and injections and lots of vomit, and also friends and boring errands and nice weather and victories.  There is this quality in a lot of stories about illness that life stops when you get sick.  It does not.  A lot of living with illness revolves around managing mundane details.  You can’t just run away from your life and have adventures when you get sick for real. 
So I read the book.  I read it very quickly and finished it on the train to work one day.  I literally bawled hysterically on the red line train while people stared at me.  It took me a few days to talk about it.  It was the only fictional book I have ever read that accurately described the experience of being sick.  It addressed the overpowering guilt you feel when you are seriously ill, the omnipresent worry that if you die, you will ruin the lives of those you love.  It addressed the awkward interactions between parents and their sick children.  And it also realistically depicted what happens when your disease progresses to a point that you lose control of your body, both physically and mentally. 
The change of seasons as fall became colder and less colorful was the backdrop to my disease progressing last year.  I read “The Fault in Our Stars” a few weeks before my bone marrow biopsy.  It affected me in a way few other books ever have.  It was heartbreaking both for the ways my story was similar and the ways it wasn’t.  It amplified the loneliness I felt in my damaged relationship.  It both validated my experience and reminded me that I was alone. 
I saw the movie yesterday with one of my oldest friends.  She has been on this journey with me from the very beginning.  It is weird to be a sick kid, watching a scene about eulogizing a sick kid, while sitting next to one of the people who will eulogize me.  It is weird to see my feelings depicted in a Technicolor teenage love story.  It made me remember things in my own life and feel them all over again.
When the movie trailer came out, I commented that I wanted to see it but wasn’t sure if I could.  I wasn’t sure I could handle it, especially as a big part of the book is being loved even when it gets hard and my relationship was so recently over.  As the opening of the movie drew closer, a lot of my friends told me that they wanted to see the movie with me. 
When you are friends with someone, you share a lot of things with them.  We share a lot of happy memories, and now I am sick, and we share that, too.  It feels lonely sometimes, but really my disease is a group experience.  Wanting to do this together is, in some ways, an expression of the fact that they are with me and they still love me even though it’s hard, and that they will keep loving me even when it’s harder.  It is a way to feel this pain together in a confined space. 
It’s funny the things that become meaningful in the context of your life.  To some people, it’s just a movie, but to me, it’s a metaphor for all the things that have happened to me.  It’s a way to share that experience with the people I love and grieve together for a little while.
 “Grief does not change you, Hazel.  It reveals you.”  John Green, “The Fault in Our Stars”