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November 2016


My family didn’t travel much when I was growing up. In fact, my parents have only left the country once, to Bermuda, for their honeymoon 33 years ago. As a child, my family went to Disney. We spent weekends in New Hampshire at a campground where we had a seasonal site. Otherwise, we didn’t travel.

I have worked full time since I was a junior in high school. It sounds really silly to say this but it didn’t occur me to until college that I could just save up my own money and travel on my own. I just realized on my way home for the weekend that I could price out airfare, sightseeing and hostels on my own. I sat up late that night, googling Eurail passes, train maps and admission for museums and tours on my family’s iMac with dial-up internet. A year later, I backpacked through eight countries over 26 days.

In the past 12 years, I have visited twenty countries, some more than once. Almost as much as science, my need to travel has been the factor that propelled my life forward. I have never been able to replicate the feeling of wandering through a landscape that has never seen me before. I have never been able to find a substitute for the release of travel.

I have also never been able to find a substitute for the feeling of coming home. Homesickness is a symptom of our primal urge to belong somewhere, even if it’s somewhere we don’t particularly enjoy. I went to Scandinavia in 2007 and had some adventures, including getting lost in the woods above Bergen, Norway, for several hours. But the enduring memory of that trip is of walking into my apartment, closing the door behind me, taking all my clothes off and leaving them in a pile on the floor, and making coffee. You exchange one kind of freedom for another when you travel. You lose something by not being at home.

Home is a feeling. It is comfort and predictability and warmth. I lost this feeling several years ago but it took me a lot time to identify what I was experiencing. I feel a constant discomfort and exasperation now and it is caused by being sick. I am homesick for a healthy body.

The last several weeks have been difficult. I feel gross. I am listless and bored and unmotivated. I am tired of living in this body. I am tired of this being my reality. I am grateful to be alive. I am aware that I am in a much better situation than many others with this disease. But some days, I am just so, so tired.

I know a lot of people are worried about me. I’m sorry. There’s nothing I can do about that. I don’t have any reason to believe that my life is in anymore danger than usual. Not a lot has changed. We are trying some new meds to get me more stable. There’s just not much to report.

Several people have said that they feel I am not being forthcoming when I respond “I’ll be okay” or “I’m fine” to inquiries. I’m not being evasive. I think I will be okay and I am fine. Living with health issues this complex requires a ready acclimation to changing conditions. I may be asleep most of the time and having bad GI pain but unfortunately, this has been my reality before. After this passes, it will almost certainly be my reality again. That’s just how it is.

There are still good things here and good people. The world is still a luminous place. There is still joy and I still find it in the space between the hard moments. I am not an emotional mess or despondent. I am just waiting. I am waiting for this to pass like I have waited every other time.

I thought I might be able to allay some concerns if people understand my life a little better. I do live alone with my dog and my bunny but I live in a basement apartment in a house that is occupied by my landlord and landlady with whom I am close. Astoria will bark relentlessly if she thinks I am “in trouble” until someone shows up. My parents live a few houses down the street. If I yell from my house, it can be heard at their house. I see my parents every day, my sister often, and assorted friends and family a few times a week. I do not live an isolated life.

If I am in trouble, or need help, I am not shy about asking for help. I have help with my animals and friends and family to help with errands and chores. I live in a two room apartment so that even if I’m feeling disgusting, I can keep it clean easily. I have home nursing care and am well equipped at home to deal with symptoms and emergencies. I have regular medical appointments. I have help and health care and excellent support.

So if you are worried about me, I understand. But I am fine and I will be fine. Even if I am still homesick. Even if I still dream about laying down these burdens, pushing the door open, and being home.

Someday soon, there will be more joy in one day than pain. Things will get better and I will get better.

Be hopeful. Always.

An eventuality

I don’t dream lately. I think it is because I am so tired. I am sleeping for 16-20 hours at a time and fall asleep uncontrollably. I sat down on my couch with my laptop earlier this week and woke up several hours later. For many years, I have struggled with the amount of time I lose because of my illness. Hours and days that I wanted to do things and feel things and say things were stolen.

This feels different. My eyes close and hours later when they open, there is no sense that time has passed. I am no longer losing time. That time doesn’t exist.

I am really sick right now. Sicker than I have been in years. I am currently on medical leave and have stepped back from my other responsibilities. I spend most of my time on my couch or in my bed. I have a hard time reading and writing so I mostly watch movies.

I started having unusual symptoms in August but I thought it was because of the heat. When they worsened in September, I thought it was because of the season change.

Now it’s November and clearly something else is happening here. My blood pressure plummets when I stand, fast enough that I actually hit the floor once before I realized what was happening. I have had blistering lesions, mostly on my hands and arms. I am running a persistent fever, waking up in a puddle of sour sweat, and losing weight. I stopped trying to lose weight ten pounds ago. I am now the thinnest I have ever been since my freshman year of high school. I have weakness and numbness in my extremities. My legs feel like they will give out though they have not yet.

The weirdest symptom is probably the bruising. I have bizarre bruising on my extremities. Last week, I felt weakness in my left hand and looked at my arm. As I was looking at my arm, I watched a blood vessel burst in my tricep. My vessels are so irritated and rupturing in some places.

I am having really bad GI pain that is distinct from my normal pain pattern. It feels like I need to stool immediately but of course my colon doesn’t do that so there is no output. Every time I eat, no matter what I eat, I have severe GI pain. Doubled over pain. Electric shiver running up my spine pain. Even with safe foods. Even with liquids, if I drink enough.

My doctors and home care team are all on the same page and I’m getting attentive care. But when things like this happen, there is not much you can do but make changes and wait to see if you will improve. I watch documentaries and eat mashed potatoes very slowly. I degranulate anyway and shortly my skin is bright red and stinging, my abdomen hurts and I am drawn into the dreamless narcotic oblivion of sleep.

It is tempting to think of the disease as devouring me but really this is much more passive. Being devoured implies a struggle. It implies that you can fight. I can’t even see this. What is happening is less active, an eventuality. I am not removed from the world. The world just grows over me.

I have had bad days and bad months and even bad years. I survived them and recovered to a reasonable extent. I remind myself that I spent most of 2014 in a spiral and that I am much better equipped now to address issues on my own or with my care team. There is no way to know how long it will take to improve or when this will stop or how much of my life I will lose in the meantime.

I will survive this, too. I will recover from this, too.

I feel sad and scared and frustrated.

It wasn’t supposed to be like this.


Expectation of hysteria

Trigger warning: Violence against women, domestic abuse

I try my best not to wade into sensitive topics that don’t relate to mast cell disease when I am functioning in my capacity as the author of MastAttack. As an individual, I have no problem discussing my personal views and opinions. But as a figure in the rare disease community, I avoid it at all costs. Our lives are stressful enough as it is.

Despite this, I feel compelled to write about something that has weighed heavily on my mind for the last several weeks. The following post has no information about mast cell disease and reflects my personal experience. It includes description of graphic violence and domestic abuse.

Lisa is not my full name. My full name is Lisa Lillian. At some point in college, my student record hyphenated my name to Lisa-Lillian. I never corrected it. Lisa-Lillian is the name on my diplomas and the name I use professionally. I like the idea of having two almost distinct personas with a clear division between my profession and my private life.

I was named after my grandmother. Her name was Eugenia Lillian Hannagan Klimas. She mostly went by Lily. I don’t know if she went by Eugenia or Eugenia Lillian at work. I don’t know if she had two personas. This is the least of the things I would like to know about this person that I will never, ever know.

My grandmother was born on December 8, 1919, in Ireland. A number of years later, I would also be born on December 8. I share with this woman my name, my birthday, and my father.

She was adopted by an American couple of French Canadian descent and lived for the latter part of her childhood north of Boston. She married and took the name Klimas. The marriage was unstable and violent. She eventually left but never divorced her husband. I don’t know for sure why but it was culturally very unusual for Irish women to divorce at that time.

She had other relationships after leaving her husband. On January 1, 1969, my grandmother’s boyfriend attacked her in their apartment. He stabbed her repeatedly in the kitchen. She ran into the backyard and bled to death before help arrived. She was 49 years old. I am connected to this person despite the fact that I know almost nothing about her and never will.

The last several weeks have been downright frightening for me as a woman. There has been a lot of conversation about women and women’s bodies. There has been a lot of conversation about what constitutes assault, something I cannot even believe requires explanation in this world where we can readily find information in seconds. There has been a lot of conversation about what language is “a joke” and how women should know how to “take a joke” and “not be so sensitive”. It is nauseating to think about all the things that have been said, some of them by people I trusted to understand the rights and agency of women.

The fact is that women are treated differently than men in many situations, even in company that you would expect to respect parity. The path of my experience with the medical establishment has been defined at least partially by the fact that I am a woman.

As a woman, there is an expectation of hysteria that you must overcome to get to a baseline level of respect. A great many providers assume that women are embellishing or mistaken when they describe their health issues. Many women that pursue treatment for chronic health issues are told that they need to “stop focusing on these issues because you are making them worse”. We are told that our physical issues are in fact due to anxiety or depression (I was). Our health problems are routinely mischaracterized (mine were). At best, they may be recorded as psychosomatic; at worse, we may be accused of malingering or Munchausen’s (I was).

I have had the same care team for several years. They know me pretty well. I am fortunate that they respect me and my understanding both of my body and of mast cell disease. I have a long track record of being cooperative and compliant. I have a mountain of documentation demonstrating that I have mast cell disease and other chronic illnesses.

Despite this, every single time I need to directly ask for something, I am scared. I am scared that they will reveal that all along they have thought I was lying about my health. I am scared that they will refuse whatever I have asked for. I am scared that they will fire me as a patient. I think paranoid is a fair characterization. I understand logically that I have done nothing to warrant such treatment, and that I have no reason to expect it from this team, but I’m still scared anyway. I have been scarred by years of providers dismissing my concerns or outright calling me a liar while I suffered with a condition they didn’t believe was even real.

As a woman, I struggle to present myself as not being weak despite the fact that I am assertive and not afraid of confrontation. I am a crier though, especially when I’m frustrated. That immediately turns into me being a hysterical woman, as if I have no right to be emotional. Emotional displays are considered hysterical in women, a defect that should have been eliminated by now.

On days that I work, I frequently encounter street harassment. I walk past people and they make comments about my body. I don’t want to make eye contact but then if I don’t, they sometimes try to get in my way to force me to run into them. If I get past them without acknowledging them, then they are talking about how much of a stuck up bitch I am for not even saying hello. Because in today’s society, there is also an expectation that women be polite even to people who mistreat, abuse or actively try to harm us.

There is no way for me to avoid situations like this because I do nothing to provoke them. I just happen to walk by. I walk by with my earbuds in, eyes down, and all I can do is hope that on this day, no one is going to tell me that I have a nice rack or that they would love to slap that ass. It is stressful and upsetting. And it is the norm. There is no public outrage that a man can sit next to me on the train and lean in close and try to get a response from me while I try my best to pretend he’s not there. There is no public outrage when a man yells at me at the train station because I don’t respond to his questions.

When I was 20, I went to Paris with my 15 year old sister. We were harassed relentlessly by two men while hundreds of people stood there, looking away. In Italy, a man stuck his hand up my skirt and started masturbating. A few years later, when I went back to Rome, a man sitting across from me on the train was openly masturbating. No one said a thing.

I can never assume that a comment was just a comment. I can never assume that it won’t progress to a physical altercation. I can never assume that if it does progress to an altercation that people will help me. This world is already inherently dangerous for women. We cannot risk that it becomes even more dangerous.

A quote often attributed to Margaret Atwood describes this risk well: “Men are afraid that women will laugh at them. Women are afraid that men will kill them.” Every time I am marginalized for being a woman, I am reminded of the fact that a woman with my name and birthday was murdered in a domestic assault.

Be careful. Be aware. Help where you can.