I went out on medical leave at the end of October. I communicated with my work team, with our HR department, and with my short term disability company. I explained the situation and that my return date would be an estimate. I spoke with the three doctors who primarily manage me prior to calling about STD so that they would expect the paperwork. I get in home nursing care and have frequent medical appointments and testing. I am frequently observed by providers and, for once, I looked sick. I was so demonstrably sick that I was not concerned that my disability would be denied.

Ten days after I filed for disability, I received a call from my STD carrier. They informed me that they were denying my claim because they had not received any information to support that I was sick and couldn’t work. Initially, they said they had contacted my providers and that the providers said I was fully able to work. I knew this wasn’t true, especially because I had sent in office notes along with my STD form directly to the carrier. The company then said that the providers said I was unable to work and verifiably sick but because they did not know the exact date for returning to work, the STD was denied. We had no idea how long it would take me to get back to baseline and my STD company had refused to approve it without a firm date.

Without approval of STD, I would have lost my job and health insurance unless I immediately returned to work. Of course that was impossible. I was so afraid that I would lose my insurance that I had a panic attack while on the phone with my insurance company. This triggered a bad mast cell reaction. The company eventually found the office notes sent over and agreed to approve disability for four weeks from that day.

Naturally, I was not ready to return to work by the date my insurance arbitrarily set. I called two weeks before this date to notify them of this fact. I had appointments with my providers who both agreed that I was not well enough to work. We agreed on a tentative return date in early January.

Despite the significant notice and providers who sent in required paperwork, my company once again denied my STD claim. This went on for weeks. Last Thursday, I received a phone call telling me that my claim was denied from early December on because my providers “said I had no ongoing health problems and there is no reason [I] can’t work”. After weeks of phone calls from myself and providers, filling out paperwork, sending clinical assessments and office notes, my insurance company was still insistent not only that I was too sick to work but that I had NEVER been sick at all. This is the same company that covered me after I had surgery so my previous approval for surgery secondary to mast cell disease was known.

Friday night, after a day of frantic phone calls and emails, I received a message that my STD was approved through late January based upon information that had been received weeks ago.

In the time I have been fighting for short term disability, I have slept for upwards of 20 hours a day most days; developed bruising over most of my body; experienced weakness and numbness in my extremities due to vascular inflammation; developed blistering hives; had a daily fever, sometimes quite high; had daily awful night sweats; had a major flare of orthostatic symptoms such that I would pass out upon standing up; had awful headaches and difficulty thinking; developed gastroparesis, making eating and retaining the food very difficult; had abdominal and rectal pain so badly that I sometimes vomited from the pain; and vomited every day, usually multiple times, from gastroparesis, pain, and mast cell disease. Throughout this process, I have continued to receive documented, ongoing care to manage these verifiable conditions. I am currently attached to an IV line for sixteen hours a day with IV push meds throughout the day. I take 20 meds regularly, including multiple daily doses of IV, oral, and rectal meds.

A huge part of the struggle of being sick is having to convince hostile parties of this fact. I am terrified every single day that I will lose my insurance and job because an insurance company has decided that I am just not sick enough despite significant evidence to the contrary. I am tired of having to fight every single day to demonstrate that I am sick and that fight making me sicker. I am so tired of having to beg for things that I need to stay alive.

I have always been fascinated by medicine. I have very early memories of playing with a Fisher Price medical kit with a doctor’s bag and facsimiles of instruments in faded plastic. I had an assortment of “medical books” as a kid, including part 2 of a medical dictionary published in 1993 that covered I-Z. If your condition was in A-H, it was out of my hands.

As strange as this sounds, one of the things I have always appreciated about medicine is the lack of aesthetic sanitation. Medicine shows things as they really are. Not practitioners, not doctors or reports – that’s different. But medicine in the purest sense is inherently graphic, unencumbered biology. It is blood and cells and inflammation and organs, physiology that works around defects structural or functional. There is no pretense. Medicine is gross.

Over the course of my life, I have seen medicine become more visible, more mainstream, better accepted and better understood by society. Initially, the stories about medicine consumed by the public were sanitized. A lot of pain, a lot of consequences, very little blood, puke and stool. Bald heads but not packed wounds, darkened loose skin but not skin taut and stretching to contain the liters of edema beneath it. Society mostly endorsed the idea of being sick without the putrid physical evidence of it.

But then Al Gore put all those tubes together and the internet became a thing. Online articles and email became a thing. Then blogging and social media. Personal revelation became more prized and lauded and the demand for new material was large. This intense interest in revelation and soul searching skewed favor towards people who had a renewable resource of emotionally trying things to reveal. We became invested in the daily lives of these people. A lot of those people were sick.

There is a fetishism about sickness that can be deeply trying. The interest is not just about the illness and how we live with it. It is about the attitude and the perseverance. People think there is an honorable way to deal with illness that is almost transcendent. There are two diverging paths stemming from a single point: the desire for deep, graphic revelation in tandem with the exclusive public expression of hope and lessons learned. There is a currency in suffering.

I am generally optimistic and hopeful. It is my preferred coping mechanism and is genuinely how I perceive the world and myself in it. I am also a deeply analytical and pragmatic person. It is sometimes difficult for people to reconcile the fact that I am hopeful about the future while simultaneously being very realistic and raw about my life.

I am recently having a hard time with the expectation that I should police my speech when talking to others about my health. If I’m honest, it’s less a hard time and more something that enrages me. It’s not okay that sick people are so often put into positions where they are expected to comfort others about the fact they are sick. It’s not okay that by talking frankly about complications of my disease and how sick I am of puking up everything I eat and how it takes me six hours to get stool out of my body, I am accused of being negative.

I believe the world is still a good place and that things will get better but let’s be real. Believing those things is not going to prevent me from having anaphylaxis or a bowel obstruction or gastroparesis. It is not going to make my GI tract move. It is not going to stabilize my blood pressure.

The difference in reaction to serious health news is vastly different among people who are chronically ill and those who are not. And it’s not really talked about because so often, we care a lot about these people who are trying to change the narrative of our stories. The difference is stark. Last week, a dear friend who is also chronically ill asked if I had a current will that had details of who I wanted to care for my animals if I pass. (I do). Shortly after, while talking to a very well intentioned person, I was repeatedly shushed and talked over with such phrases as “God forbid” and “You can’t give up like that” and “That’s giving up” and “You just have to fight”.

Every second of every day is a fight. A gross fight. A fight with blood and shit and needles and so much puke. A fight when your head feels like it is being crushed and you need to not puke to keep down your oral meds and you are in bed 18 hours a day. A fight that generates an unbelievable amount of trash in piles on every countertop and table, flush wrappers and syringe caps, used alcohol swabs, and sharp containers filled to the brim. A fight to remember which pharmacy I have to call today and what I have to get approved by insurance and what appointments I have and which I need to schedule and what meds need to be filled. I fight, even if people think me being frank is giving up. Every second, I fight.

I am real. My diseases are real. The mess and the garbage and the grossness are real. The expectations and the danger of being this sick are real. None of this is internet magic. My port is real, the constantly getting my lines tangled is real, the screaming into a towel while trying to stool is real. My scars from my ostomy, from my PICC line, from my other surgeries, are all real. The voids inside me where pieces have been taken out of me are all real. The planning for a future in which I can’t work or will succumb to this disease sooner than later is all real. The taking medication every thirty minutes while I’m awake is real.

Pretending that my health does not present a tangible risk to my life is just absurd. I can no longer live in a space where people think that thinking positive will save my life, overcome my need to IV meds, overcome my inability to eat, overcome my inability to get waste out of my body. This shit is real. I need every available piece of energy to fight, especially the fights people can’t see.

I am positive when I feel positive and I am not when I don’t. I am happy and mad and sad and numb when I feel happy and mad and sad and numb. I am realistic and pragmatic when I need to be. All of these parts of me are real and they are all part of this fight.

It is not my job to make people feel better about the fact that I am sick. It is my job to stay alive.

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.