my feelings

The GI tract moves. You chew food and swallow it but after that, the tract is on its own. Smooth muscle contracts and relaxes in rhythm, marking time by the forward propulsion of what you consumed. The food is pushed down the esophagus in a matter of seconds before entering the stomach. The GI tract moves. Hormones and enzymes and acid are released in the stomach. Digestion begins. The GI tract moves. This partially digested product is pushed through the pyloric valve into the small intestine. The GI tract moves. The food is degraded and all of its useful parts liberated. They are shuttled out of the intestine to nourish the body. The GI tract moves. The remaining substance is pushed to the colon. The colon reabsorbs water and minerals. The GI tract moves. Devoid of any nutritional role, the stool is passed through the rectum and the anus, where it leaves the bottom. Meters of GI tract. It all moves.

There is a line when you have serious GI motility issues. The issues are serious on either side of the line but we become defined by the choice to step across it. It changes everything and you can never go back.

This is the line: when you are afraid to put food into your body because you don’t know if you can get it out.

To say that my GI tract doesn’t move properly is laughably understated. It is so hard for me to get stool out of my body that I had an ostomy for years and will probably have an ostomy again. I currently rely on the magic of lidocaine gel, glycerin suppositories, and disimpaction to stool. The colon is the hill my GI motility has chosen to die upon. Above that, I have trouble, but it hasn’t been appreciably from dysmotility. I puke a lot and sometimes there’s blood in there and I need multiple doses of multiple meds daily to manage my nausea, but that was never from upper GI dysmotility.

Except this week, after several weeks of bad epigastric pain with eating on top of my abdominal neuropathy, colitis, and rectal pain, I am now vomiting up mast cell safe meals hours after eating it, completely undigested. My stomach is not moving food into the small intestine and it’s not digesting it either.

There is almost nothing I can do to my diet to improve GI motility beyond not eating solids. I can’t add in foods that are known to help because I either have serious mast cell reactions to them or they are contraindicated in colitis patients. Anything with fiber is dicey if I’m having colitis and I basically have colitis all the time. Up to this point, I have been able to minimize gastric pain as long as I ate foods I didn’t react to and that weren’t colitis triggers.

That is no longer the case. My stomach won’t do it anymore. It just won’t move food and it won’t break it down. Whatever does get below the stomach, mostly by gravity, eventually arrives at the colon and we all know how well that goes. I can’t keep food in my upper GI tract and can’t get it out of my lower GI tract, a sort of wicked symmetry.

The GI tract is composed of related but dissimilar parts. They are only really related because they are connected. The small intestine and the stomach and the rectum don’t have a ton in common if you remove this fact. Their allegiance is real but fragile. It is not that hard to break it.

For reasons that are hotly debated (including mast cell degranulation, nerve damage, and microbiome disruption), the GI tract stops working when you touch it. Post operative ileus is the most classic example of this phenomenon. Usually, the tract starts working again. But there is a limit. There is a limit to how many times you can touch the GI tract before it just stops working.

The continuity of my GI tract has been altered, sections removed and non-contiguous pieces sutured together. I have had scopes via all three access points to my GI tract, so many of them, and so many biopsies. All these little pieces torn out of me with cold forceps, these little pieces fixed in formalin. These little pieces that leave little craters, until the topography of my GI tract is as foreign as the surface of the moon. A moon that doesn’t even recognize itself and can only appreciate a wicked symmetry.

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.

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.

In the fall of 2013, my health took a serious turn from shitty but manageable to completely out of control. For the next several months, I spent most of the time in bed. I was having classic POTS symptoms but I didn’t know anything about POTS yet. I was having excruciating bone pain and was puking every day. It was the first that my worst symptom was pain and not exhaustion.

Within the next six months, I became so sick that I was largely confined to my apartment. I worked but mostly from home. I put on a massive amount of weight from high doses. I had a PICC line placed and started doing infusion and IV meds at home. I went low histamine and lost a ton of foods that I was never able to add back in. I had hives all over my back, neck and chest. I had anaphylaxis a number of times.

I have always kept journals. I periodically go back and read old journals. In the fall of 2013, I was miserably sick. But my entries didn’t focus on the symptoms or the pain. They focused on the fear and despair. My fear had become its own world, superimposed upon this one. I would lay awake at night, alone in the dark, trying to find the edges of that place.

Part of the fear was confusion. I was used to arguing with insurance companies but now I was arguing over things I didn’t fully understand. Arranging nursing and line care, identifying pharmacies for compounded and IV meds, scheduling procedures with doctors who didn’t know me and thought my special requirements were ridiculous and unnecessary. I was constantly having to insist that, I was in fact, really sick.

Perpetually having to relive your worst health experiences for the benefit of an unforgiving audience is scarring. The frustration, uncertainty, and fear made for a dark emotional landscape.

In the last 18 months, I have largely improved. I had much more stamina, POTS symptoms were much less severe, anaphylaxis was much less frequent, food reactions were not as bad. I could exercise again and lost the weight I gained on steroids.

I have been having worsened GI symptoms/abdominal pain as a result of the herniation. The last few months have been phenomenally stressful and that has made things much, much worse. At the end of the summer, I started having severe GI pain anytime I ate anything. I thought I was reacting because of the heat. Then it wasn’t as hot anymore and I was having severe GI pain and night sweats and blistering hives and strange bruising. I thought it was from the change of seasons.

I am now having severe bone pain in my pelvis and both legs to the extent that it is painful to walk. I am having low blood pressure and getting tachy when I stand, even though I use IV fluids to stabilize POTS. I am still having severe GI pain anytime I eat. I continue to lose weight despite the mathematic certainty against this, given my caloric and fat intake and recent level of activity. I wake up in a fog with a buzzing in my head that it seems I have had before.

I had the same symptoms in the fall of 2013, the sentinel announcing the onset of a health nightmare. It’s happening again.

I am frustrated and upset about this development for obvious reasons. I’m scared but not scared like I was in the fall of 2013. I have a port, ready access to IV meds and fluids, weekly nursing care, line care, excellent insurance, a pain management plan, and a team of doctors that treated me in 2013 and has learned a lot since then. I am much, more experienced in managing this disease and fluent in the academic aspects of mast cells and mast cell disease. I understand how to deal with this and have the appropriate infrastructure to do so.

I saw a friend this weekend and filled her in on my ongoing spiral. “You seem to be handling it,” she remarked in her Masters in Counseling verbiage. “You don’t seem scared.” She’s right. I am exasperated and so unbelievably tired of living in this body. But I’m not scared like I was before.

I was strong before but not like I am now. So much of this has become routine. I’m going to be sick whether I’m mad about it or not. More than that, so many of the things that scare other people bring me comfort. My port is like a security blanket. All these meds have bought me a measure of independence. Even using an epipen is rote. I’m not happy about needing these things but I accept them.

Adversity forges you, hammering you over and over in a relentless rain of blows. You either shatter or you strong enough to withstand it. The metal splinters or a blade forms. You disappear or you become a weapon. You succumb or you learn to fight.

I am not responding to emails, messages or comments, or answering questions. Some of the blog posts will be made private. The problem is not that I’m not asking for help or need help from other people; right now, that would actually make a lot more work for me. I have limited energy and have to work within certain constraints because of my job.

Part of this decision is because my body needs a lot of rest and quiet. Part of this is because I anticipate my health issues worsening before they improve. Part of this is because of the stress of being accessible online and the anxiety I have after this summer. I am just so unbelievably weary. I am tired of having to defend myself. I am required to report accusations of misconduct, baseless or not, to my employer. I am exhausted in the very core of my being.

Hope everyone is coping with Shocktober and has a happy Halloween. Take care.

On Sunday night, a friend got in touch to let me know some truly awful news: that Ginger Newton, fellow mast cell patient, connoisseur of lemon cakes, purveyor of dark humor, and friend, died at home the day before. She was 49 years old.

I knew Ginger for years. One of the more fascinating aspects of rare disease communities is that you often develop close relationships with people that you would otherwise be unlikely to know. These bonds are not generally related to personality as much as they are derived from a common suffering. But that wasn’t the case with Ginger. If I met Ginger in real life, we would have been friends.

She was a thoroughly entertaining person. She was loud and sarcastic. Ginger had a razor sharp wit that managed to bite without devouring you. She was unapologetic and shameless. In a strange way, the fact that these qualities endured in her gave me hope for my own future as a loud and sarcastic woman.

Ginger was also very knowledgable about mast cell diseases. When I met her, I was piss my pants terrified of what was happening to me physically. I was spending a lot of time stumbling through threads in mast cell groups and googling things. Since that is basically a two step recipe for scaring the shit out of yourself, I was pretty wound up by the time I talked to Ginger about my health. She answered my questions evenly and was neither impressed with nor scared of my disease. I was overwhelmed and scared and needed help. And she helped me, something I will never forget.

I have spent all week trying to figure out how to write about her. I have a lot to say. I feel a lot of things about Ginger’s death and they are so contradictory that it’s hard to get the thoughts out of my head cogently. I am sad. I will miss her. We didn’t always get along and we disagreed a lot. But I will miss her and mourn her.

I generally write posts and essays around a particular theme, usually how I feel about something. But I think the theme here is that there isn’t one. Sometimes things just happen and they don’t serve any purpose. I think this is one of those times.

Goodbye, Ginger. I am grateful to have known you even if things were difficult at the end. Thank you for the years of reassurance, friendship and help that you gave me. Thank you for reminding me that it’s okay to have strong emotions. When I see a lemon tree or use the word ‘fuckety’ or hire a cleaning lady that can’t clean without ruining furniture, I will remember you.

I don’t know where we go when we leave these bodies, but I think we go somewhere. I’ll see you when I get there. Try not to burn the place down.

The first scientific theory that really intrigued me was the endosymbiotic theory. I don’t know if I think it’s true or not but I think it’s a fascinating idea. It goes like this: many years ago, all life is single celled organisms, like bacteria. At some point in history, a bacterium brought another kind of bacterium into its cell. You now have one bacterium living inside another bacterium.

So what’s the benefit? One of them provides safety for the other by keeping it away from the outside environment. And the other provides energy. Over time, the bacterium brought inside becomes a mitochondrion, the place where many cells make energy. Mitochondria are noteworthy in that they have their own genes that are completely separate from the rest of an organism’s genes. Cells that were able to make energy like this evolved into complex organisms, like humans.

Evolution is an amazing thing but it comes at a cost. Both bacteria eventually lost their ability to survive on their own. One cell needed the extra energy and the other needed protection from the environment. Both of these cells lost their individual traits in the progression toward something larger. They became trapped.

I have been actively involved in the mast cell community for several years. I have been very involved for about three years. I will never forget the feeling I got when I realized that these people understood what it was like to live in a body ravaged by this disease. I will never forget the first people who made me feel welcome and valued in this community.

In the last few years, I have laid bare my secret pains and fears to a bunch of people I had never met and might never meet. These people carried me through some of the hardest days of my life. They listened to me scream and cry and forgave me when I was an asshole and tried to soothe me when I was desperate to not feel like this and not live in this broken body anymore.

Whether or not we want to be, the people in this community are all connected. We share a common fate. These relationships are laced with primal and fierce emotion because they could be over in an instant. When you are very sick, and you have friends who are very sick, you live in a world where death is an ever present threat. You learn to not be surprised but you can’t learn to not hurt. The pain is the same, every time.

Caring about people and their struggles is not optional. We are too much the same. When the worst happens and one of us dies, it is impossible not to feel your own mortality on top of the sadness of losing someone who is too much like us. You remember the kinship and the shared suffering and a mutual understanding that all of this sucks but we can still have good days and good lives.

The people in this community have become a larger, living thing, bigger than our individual selves. We are bound together by the smoke and dark magic of these diseases and the lives we make despite them. We have evolved to become more powerful and dependent upon each other at once.

I am a big believer in the emotional memory of the physical body. Our mind is the province of feelings but not of the visceral responses they evoke. Once we have received information and churned forth a limbic reaction, it is stored forever in our skin and muscles and bones. When I see something that reminds me of a deep loss, the percussion of my pulse swells and tears cling to my lower lashes before I even feel sadness. The body first, the mind second.

Earlier this week, I developed hives on my hands and arms. I occasionally get hives at this point but not like this. Within a few hours, they blistered. At the same time, I realized that I had bruising all over my arms and a few hives and bruises were developing on my chest and abdomen. It was well and truly bizarre but I wasn’t surprised at the onset of peculiar symptoms this week. This week, it has been a year. My body remembers.

It remembers laying on my yoga mat talking to Kristina about Seth. It remembers the hum of panic overlaying the dull bass of exhaustion. It remembers the headache from reading papers well into the night. It remembers the twisting pain and breathlessness of awful news. It remembers the way my skin burned like fire when anxiety woke me after two hours of sleep.

It remembers the soft click of the keyboard as I talked to friends thousands of miles away about this shared horror unfurling before us. The quiet pain of waiting for them to respond, both of us typing and deleting, sharing these things we cannot say. Conversations in short, informal sentences. For me, experiencing these awful moments in Facebook groups and group chats with a worldwide community has becoming an indelible part of having this rare disease. It is hard to pull masto away from social media. They are so intertwined for me.

It seems impossible that it has been a year. Last fall changed me fundamentally as a person. It is hard to realize that in some ways, things have not changed a lot. But there has been progress. There have been soul rending struggles. There have been moments where you dredge up tiny flecks of courage when you were so, so sure that there nothing left. There has been acceptance and perseverance and devotion. And in some ways, there has been healing.

We are alive. We are still here. Sometimes that is the only triumph.

I have to believe that there is a point to all of this. I have to believe that I am more than this vessel and its physical limitations. I have to believe that one day, I will be free of it.

But for now, I am still here. We didn’t lose anyone.  My body stores these emotions, a silver thread woven into every part of me that catches sometimes when I don’t expect it.

Every year for several years, before I had any idea why, I would get sick the third week of September. It was bafflingly consistent. The fact that it was so reliable led a number of doctors to insist that this was clearly psychologically induced, a re-experiencing of some nameless trauma.

It took me longer to figure this out than it should have, if I’m being honest. I was diagnosed with mast cell disease in 2012 but it wasn’t until the fall of 2013 that I figured it out why I always got sick that week. As a student and instructor, my life had been built around the school year. Every year, I would recommit myself to exercising, which I often stopped over the summer due to feeling sick in the heat. The first week of exercise at the start of the school went fine. The second week of exercise was progressively more difficult but I was still intoxicated with the impossible optimism of the new school year and pushed through. Then I would crash in the third week of September, often in spectacular fashion. It would take me weeks to recover.

Turns out I’m not the only mast cell patient who has trouble this time of year. As a community, we just cannot hang. For the last several years, I have affectionately referred to September and early October as the “Death Zone”. I’m kidding but only just. You may remember the Death Zone for such features as Seth’s miraculous survival despite significant evidence that he would not, and Kristina’s brainstem stroke. The rest of us take turns shocking and puking and sleeping for days while Mother Nature sorts out her issues. Despite my cliché love of fall, pumpkin flavored things, Halloween, boots and thick tights, it is always an uneasy time for me.

Last week was the third week in September and good grief was it a week. As if his body has a preternatural need to reset itself during this week, Seth once again crashed. He is hanging in there. The similarities between last year and this week are uncanny and not a little spooky.

I met Yssabelle and her parents a few years ago when she was airlifted to Boston after shocking on a weekly basis. She is 7 now and one of my little people. Yzzy has dense colon infiltration like me and a host of complicated SM issues. True SM in children is extremely rare and she has true SM. She has had a difficult few years and has spent a lot of time in the hospital.

This past year has seen the advent of a truly terrifying series of episodes: without any obvious provocation, and irrespective of her mast cell reactivity that day, she would spike fevers of 104F and 105F, have severe abdominal pain, and her metabolic function tests would tank. After a few days, it would just stop. She has had over a dozen of these episodes this year and every time, no one knew what it was and was not particularly concerned with diagnosing it.

Yzzy spiked a screaming high fever and started vomiting blood about two weeks ago. This time, someone knew what she had. She was diagnosed with another rare blood disorder, hemophagocytic lymphohistiocytosis (HLH). In pretty short order, she was on a hemonc floor being prepped for chemo by a team that didn’t know her.

There are a lot of things I don’t like about having my life all over the internet but it can be really helpful sometimes. The blog serves as a credential; if a provider wants to know if I actually understand these diseases, they can google me, find my work, and verify that I do in fact have a deep understanding of these conditions. I talked to Yzzy’s hemonc on Monday night and we talked about rescue protocols, anaphylaxis, and her generally complicated health. I poured over literature all week and spent the next few days putting together directly cited primers for Yzzy’s team. (The primers I have been posting are the ones I prepped for them).

It never ceases to surprise me that after so long, I can still be terrified by the danger of these lives we lead. It’s different with mast cell disease. I know mast cell disease. I know anaphylaxis. I can rattle off facts seconds after being woken out of a deep sleep. There is almost no thought involved anymore when I answer questions. I just know. And because I understand, I am not as scared.

But while the danger of mast cell disease feels smaller to me than it really is, the danger of everything that’s not mast cell disease feels much larger. I’m experiencing this right now with Yzzy but I have experienced it many times before.

It never gets less scary and is lonely somehow, something you have to experience on your own to contribute to this common desperation. There is so often nothing to be done. The fact that it will end at some point is little consolation.

I didn’t realize when I got sick that I would never get used to it and that it would never stop being scary. I didn’t realize how much worse it would be to watch people I care about suffer than to suffer myself.

But it is. I’m caught here in the void between two distant stars, trying to hold on until the light reaches me.

One of the benefits of growing up in Boston is that it offers a lot of places that make for decent field trips. A lot of America’s short history happened here. Boston kids know the pain of walking the Freedom Trail in the winter, memorizing Paul Revere’s Ride, and not being allowed to touch anything anywhere ever as we crammed into small rooms in historical buildings all over the city. Nothing on the Freedom Trail is going to hold the attention of elementary school kids for long.

The good news is that Boston does have some places that will hold the attention of elementary school kids. My favorite place for field trips was George’s Island. George’s Island is one of the Harbor islands and entirely occupied by Fort Warren, an active post from the late 1800’s until after WWII. I have lots of memories of wandering through the dark, damp rooms with a flashlight and a healthy dose of fear of the paranormal to keep things exciting. Like most old buildings, Ft. Warren has a ghost story. A Southern woman pretended to be a man to fight in the Confederate Army. She was captured and eventually hanged at Ft. Warren in a black dress, the only article of women’s clothing on the island. She haunts a narrow stone passageway that frankly would be creepy enough without a ghost.

This week, I went to George’s Island with my friend and her kids. Dana is one of the uncommon gifts that I got in exchange for the mast cell life, a great friend and mom to two masty kids. We caught the ferry at the wharf near the Aquarium and sat in the front in the sunshine. It was warmer than I expected but the wind is cool on the water. As the island came into view, an ominously thick fog rolled into the harbor.

I haven’t been to any of the harbor islands in years. The last time I was there, I think it was when I volunteered to chaperone for a summer camp group. But that’s not the memory the island has of me. It remembers me as 12 years old, on a field trip in seventh grade. It remembers the inherent awkwardness of middle school and of trying too hard to be liked. It remembers the boundless energy of youth and that I could be reckless with my body because it worked and it did the things I wanted it to. I never even considered that my body could fail me in the way it has in the intervening years.

Dana and the kids and I explored lots of dark rooms off the courtyard and walked the ramparts where the cannons used to be. The island isn’t big but the ground is uneven and inclines are steep. We followed the path all the way around the perimeter, stopping to investigate secret passages as the fog settled atop the water. We had a great time.

There is something very poignant about going back to places I visited before I got sick. It’s not just that it keeps this memory of before I grew up and before I made all these choices and before I got sick. It’s that I can’t not think about how different things would be if I could be twelve again and make all the right choices. And then maybe I wouldn’t lose all those years because dozens of doctors would rather think I’m crazy than believe that something awful was happening inside of me. Of all the things I struggle with, that is probably the hardest.

When we made it back to the visitor center, I was flushing and starting to feel less than stellar. I took meds before and took more while I was there. Nothing dangerous was happening, I just felt a reaction brewing. It was hot, humid and sunny. It was bound to happen and I was prepared for that eventuality.

We sat inside on the return ferry to get out of the sun. I waited for my meds to work as I watched the island grow smaller and smaller. Behind us, the mist closed around the island, my own personal Avalon where I will always be twelve.