Past present

My grandmother was murdered when my father was a teenager. He spent the next several years bouncing from home to home, often staying with his friends. One of those friends became like a brother to him. Our families were very close. And when I growing up, my very best friend was that man’s daughter.

She is a year older than me and was a grade ahead in school. We lived within a mile of each other for our whole lives until she was in high school. We were together constantly, easily six or seven days a week. We had almost the same life. It is impossible to overstate how important she was to me. I loved her and wanted to be just like her.

She has struggled with addiction for more than half our lives now. Our paths diverged in high school and never crossed again. I have seen her a few times at family functions. She never looks like herself. I often see things that remind me of her or that she would like and wish I could text her to tell her. We have very different lives now. But I still miss the person she was.

I visited her today in the hospital. I had appointments in the same hospital where she is a patient. Seeing her today was a jarring experience. I wasn’t really sure what to expect. When I opened the door, she turned toward me. It was the first time in twenty years that she looked like herself. I wondered for the first time if we could ever be close again.

I stayed for a while and caught up with her before going to my appointment. My doctor and I compared my symptoms and talked about how generally improved I am. I enjoyed pretty decent health from June 2015-August 2016. “Your symptoms are more like they were after your surgery,” he commented, referring to my recovery post GI surgery in 2015. He’s right. They are.

I often wonder if the reason why I so often reach into my past to compare the present to is because I am expected to literally do this at every appointment. I’m always looking for changes since the last time I was seen. Or since the last time I felt pretty good. Or since I was diagnosed with mast cell disease. Sickness is assessed by the changes it brings about in your body, and you can only do this by dragging the past into the present.

The past can be the precarious face for the present to balance on. We can never go back. Any of us, for anything, for any reason. It is over. But sometimes it feels like I catch the past in my present. In the drudging of old wounds and deeds, pieces of our old selves and our old lives are conveyed to the now. We can fit these pieces in our growing lives. We can remake lost connections.

Our lives will never spin as freely with these old pieces, weighed down with history. But they can still be strong enough to hold you up.

Loud

I am a dramatic person by nature. This is directly at odds with the logical habits and orderly thinking of a scientist. As you might imagine, I am not infrequently conflicted on how to behave or how to react in many situations. I am also bossy. I like to be right. These aren’t good qualities but it’s who I am and I know it.

I’m also loud in just about every way. My hair is fire engine red. I have a violet streak behind my left ear. I wear large colorful glasses. I do unusual and interesting things to my hair and trap it with flower clips or jeweled hairpieces or brightly patterned bobby pins. I dress like a 50’s housewife. I am physically loud, owing largely to my hearing loss and my inability to modulate my own voice level, but I was loud before.

It is a different loudness I’m thinking about tonight. I’m thinking about the loudness of a voice when you scream for help. This is likely the only way in which I am not loud. I used to be. It was never helpful. I am self reliant in large part because I learned early that screaming for help because I was sick or something was wrong with my body was a fruitless endeavor. It never helped and I gained a reputation as being dramatic and attention seeking, a hypochondriac. I learned to swallow those sounds, the ones that signal that I am wounded, that tell the other creatures that I am prey. This unmet need formed the core of my self esteem as a teenager, or lack thereof.

I met up with an old friend this week, a guy I went to high school with. We were friends when I was starting to become aware that something was wrong with my body. I was always having weird health issues and had episodes of inexplicable severe abdominal pain at the most inopportune times. We chatted about my health, then and now.

“So you always had this and just found out about it as an adult?” He asked.

This is more or less what happened. I’m not convinced that everything I had as a teen was related to mast cell disease, but probably a lot of it was. He mentioned that at the time, he wasn’t sure what was going on, if I was sick or just dramatic. This didn’t upset me at all, and was not new information. We have discussed this in the past, some time ago.

“I actually wasn’t sure either,” I admitted. When so many people think you are just inventing these things, it’s hard not to become convinced yourself. Still, I haven’t often said this explicitly. It seems like a betrayal of my deepest self, the one that swallows those sounds, and feels unnecessarily loud.

It has been a long time since those days, when I was 16 and confused about what exactly was happening to me and how much my mental health played a role. But even now it is a reflex to think I am being too direct. I have to remind myself that telling the world what is happening to me is okay and that wanting empathy and help is okay. I’m gaining volume. But I don’t know that I’ll ever be loud.

Somebodies

I’ve been trying to get this post out for a few days. I feel like it’s not finished and sharp in the wrong places but I feel like this needs to be said so I’m saying it now.

When I was first diagnosed with mast cell disease, I was pretty relieved. I had been sick a long time and was so tired of being abused by doctors and called a liar. I could have been diagnosed with anything. I could have been diagnosed with weekly limb falling off disease where every week one of my limbs fell off until I had no limbs left. I needed something to hold onto and a diagnosis had that. (I am grateful to announce that I do not have limb falling off disease.)

I do, however, have mast cell disease. It was a few months before it occurred to me that having mast cell disease might be scary. There wasn’t a lot of information available on it and I didn’t have great journal access then, so I wasn’t able to validate those fears. But I was still afraid. Just a little, at first. And then another several months past and I started having major organ involvement. And I started being afraid for real. This time, my fears were validated.

One of the more common questions I get is whether or not people can die from mast cell disease. I get it a lot from people who are newly diagnosed but I get it from people who have been diagnosed a while. I realized recently that people who have been diagnosed a while only ever ask me this question in private message or email. I’ve been thinking about why that is.

The answer is simple: people are afraid to ask if they can die from mast cell disease in a public forum because, overwhelmingly, the responses are not kind. I am guilty of this, too. Those of us who have been in this community a long time have learned to stratify mast cell patients by level of hematologic malignancy – that is, to separate mast cell patients into those who have malignant forms of mast cell disease (aggressive systemic mastocytosis, mast cell leukemia, and mast cell sarcoma) and those who don’t. Because typically the people who lose their lives to mast cell disease are those with those malignant forms, and those who don’t have them don’t die from mast cell disease. The medical institution views malignant mast cell disease as dangerous and the other forms as not dangerous. Specifically, the establishment touts to everyone who will listen that you don’t die from mast cell disease if it’s not malignant.

But the truth is that’s not really the case, if you think about disease and what it does to a person and all the ways it kills them. It’s true that a person with ASM is not likely to die in the same way as an MCAS patient. A patient with ASM will die from mast cell disease if the thousands of extra mast cells burrow into their organ tissue and destroy that tissue so much that the organ stops working. That’s not what happens in a patient with MCAS. But a patient with MCAS can die in other ways. They can die from anaphylaxis and complications of huge steroid doses and side effects from chemo and sepsis and not being able to afford their health care costs and not having insurance and not being able to face one more minute of the humiliation and desperation that is begging for care from people who don’t want to provide it. All of those things can kill a person, too.

Defining death from mast cell disease along by delineating along the lines of organ failure is disrespectful, unfair and missing the point. All of us who have spent years living inside the data of this disease have done it, including me, and we should be sorry. I am. It has never been my intention to characterize MCAS as less serious than other forms of mast cell disease but I think I did anyway, and whether or not I wanted to do it doesn’t change that. I am sorry for doing this. It is not okay. I am committed to doing better in the future.

Fall is a difficult time for mast cell patients. It’s a lot of change at once. It’s new routines and major environmental upheaval. It’s triggers on crack. Season changes are always hard for us but autumn is harder, I’m not sure exactly why. But in the same way that I associate September with ports, I associate fall with mast cell patients crashing and dying. This year has been no different.

In the last several weeks, we have lost a number of mast cell patients across a variety of diagnoses, to the tune of six in six weeks. It’s painful to even type that. One of them was my friend, an SM patient who died of complications of anaphylaxis. Another was a touchstone in the MCAS community, a young woman who did a great deal to comfort others, and who undoubtedly died of complications of MCAS. Still another died of suicide. These last few weeks have been so, so crushing.

There is a very, VERY good chance that you will live a full life with a normal lifespan as a mast cell patient. But it’s not enough to say that people don’t die from non-malignant forms of mast cell disease because “almost nobody does.” Those “almost nobodies” are somebodies, and they are people with lives and dreams and futures they don’t get to experience. They do not deserve to be lost in the data, digits rounded down to zero.

We owe it to them to remember that they were real and that they were here and that they mattered.

I owe it to them. So let’s do that.

Additional posts on prognosis and disease progression:

Progression of mast cell diseases (Part One)

Progression of mast cell diseases (Part Two)

Progression of mast cell diseases (Part Three)

Progression of mast cell diseases (Part Four)

Progression of mast cell diseases (Part Five)

The MastAttack 107: The Layperson’s Guide to Understanding Mast Cell Diseases, Part 15

The MastAttack 107: The Layperson’s Guide to Understanding Mast Cell Diseases, Part 48

On prognosis and dying from mast cell disease

I am not there. I do not sleep.

 

 

 

Monster

I have a sunburn. Today, I embarked upon that most quintessential New England autumn venture: apple picking. It was supposed to be about 70 degrees with a breeze and some clouds. Instead it was almost 90 degrees with a little breeze and a sun beaming directly down upon us. I always wear sunblock on my face and cover a lot of my skin, even in the summer, so it wasn’t too bad.

The sunburn is on my chest and shoulders. It’s not serious. It won’t blister. It looks red and angry and kind of hurts. Not a lot of pain, but there. Persistent. Stinging.

I have been sick a long time. And that means have been in pain a long time, too. There are lots of different pains and I know them all. I know the loose instability of stretching a joint too far. I know the burning of flushing skin and the stinging that remains after the flush is gone. The abdominal neuropathy that spreads like lightning across my midsection, electric fractals emanating from a central point. The hard swelling of my colon when fluid is trapped in the tissue. The way it feels like broken glass when my GI tract reluctantly moves things through its lower portions. The white hot fire of something passing over an open wound. The acid throbbing of vasculitis. The beating against the back of my skull of a terrible headache. The pressure of food that will not move as my stomach swells around it.

I have needed pain medication of one kind of another for several years. I have lived a very privileged life and I have been very lucky to have a medical team that has been largely the same for several years. My doctors know me pretty well. And because they have seen me screaming in pain and seen the damage that caused the pain, they are willing to help me manage my pain. It is a never ending process of adjusting medications and behaviors and foods but I have options that many people do not. I am lucky. Very lucky.

Drug addiction is a hell I wish on no one and one that has affected me personally in many ways. Heroin abuse is often a complication of opiate abuse: it renders a similar high but is cheaper and easier to get (as I understand it – I do not have personal experience with heroin). Sometimes people who are prescribed opiates for legitimate reasons become addicted and are forced to buy pills illegally or resort to other products, like heroin. Often, people with addiction come to heroin or pills another way, without ever having had a medical reason for using them.

Last year, the CDC made broad recommendations regarding prescriptions for opiates, probably the most well known drug class of pain killers. I had anticipated their recommendations with dread and I was not disappointed. In brief, their recommendations were that every other avenue for pain management be thoroughly exhausted before use of opiates, which would almost certainly render pain relief. The quantities to be prescribed were small and the courses short, irrespective of whether or not this was appropriate to the pain condition or realistic in any way.

Patients would all be drug tested frequently so that we could prove over and over again that we are not drug addicts. Our medication would not be filled without us proving over and over again that we are not drug addicts.

And for those patients like me who have debilitating, chronic pain, there were provisions for trialing removal of pain meds so that they could determine whether or not we actually needed them and if it was possible to reduce the dose at all. Most alarmingly, in my state, they adopted guidelines that could people like me to be evaluated by a doctor who knows nothing about me or my rare disease in order to determine whether or not I really needed these drugs. I am not an addict. I take my medication as directly. I fully comply with any and all guidelines and am happy to pee in a cup every time they instruct me to. But I am still afraid. I am afraid that I will do everything right and still end up in severe pain with no drugs to manage it because government agencies are conflating the epidemic of drug addiction with the necessary pain management of chronic pain patients. And that fear is getting larger and larger as time passes.

This past week, a large pharmacy chain in the US announced that they would only dispense seven days of opiates for “new” patients. There is already a lot of debate about what exactly this means but I guarantee it means more trouble and stress and fear for people like me. I cannot imagine a system in which a pharmacist can know my personal health and pain situation better than my provider of many years. What if the pharmacy decides I’m a new patient and just won’t give me more than seven days? What happens then? There are no answers yet on what will happen, but I don’t need to specifics to know that the people who will be most affected are people like me.

There are many practical reasons why this particular practice is a terrible idea. For one, it requires patients to be seen again to get a new prescription after seven days. For a pain situation in which a patient might need pain meds for a month, this would translate to four office visits instead of one. That’s four copays. That’s four trips with associated expenses. And that’s four copays at the pharmacy. That’s four office visits that already overextended provider’s office now needs to find time for. And when they can’t find the time, those patients may be left without any pain medications until the next appointment.

But these are not the reasons that literally keep me up at night so that I am writing this post at 12:50am despite being absolutely exhausted. What keeps me up is that no matter what, no matter what the intentions are for all these restrictions, and who they are supposed to affect, me and people like me will suffer. We already know what it is like to be treated like a junkie. We already know that we have to convince every provider we interact with that we use pain medication responsibly as directed at appropriate doses for our pain condition. We already know that we’re never totally convinced that those providers believe that.

But most of all, we know pain. And we know that in the current climate of increasing restrictions on pain management, we will have more pain than we used to. Pain that could be treated effectively if there was not such a stigma upon using opiates for chronic pain when everything else has failed. Pain we remember and are afraid of.

Pain is such an abstract quality to those who don’t live with it. People who don’t have it often do not empathize with those of us who do. We are often painted as lazy or attention seeking. Some day, those people will know about pain, and they will feel guilty then. But it will be too late at that point. People like me can’t wait for that day.

Pain is a monster with many faces that haunts every moment of your life. It eats our sore muscles and swollen joints and ruined organs and twisted bones. It eats and eats and eats until there is nothing left that suggests a person lived in this vessel. That there was once a life here, and dreams, and aspirations. That beautiful things lived here before they were destroyed.

Pain is not something you can overcome as a society by pretending the people who have it will be able to figure out another way to manage it when you rob them of their best tools. Chronic pain kills people. We know this fact. It is not disputed. Pain causes inflammation that can cause strokes, heart attacks, cancer. It causes despair and loneliness. It causes suicide.

I am afraid that we will not be remembered as the generation that overcame opiates. I am afraid that we will be remembered as the generation that pain destroyed. If we are remembered at all.

 

 

The really important things require much more than that

I have two best friends named Allison and Alyson who are both very, very into music. With few exceptions, all of my musical influences arrived to my ears via one or both of them. Alyson lives in Seattle. Alli and I went to visit her there in 2014 when I had a PICC line and 40 lbs of steroid weight and a constant flirtation with anaphylaxis.

While we were visiting, the three of us went to Portland, Oregon for the weekend. It was a really amazing and cathartic experience for me. It feels like that was when I began to reclaim myself and my body and my life. It was an experience I will never forget.

Alyson has always been the type of person who follows bands around the country because she is much cooler than I am. In the last few years, she has been obsessed with Kasabian, a British rock band. She flew into Boston for less than 48 hours to see them in Boston two days after seeing them in New York and a few days before following them to Chicago.

I hadn’t really heard much Kasabian before but tonight I went to the Kasabian with Alli, Alyson and Alyson’s mom, Charlene. We were having some hairy health care moments in the line outside, waiting to get in, so I wasn’t really sure how things were going to go. But I decided that if we got into the venue that I was going to be a huge Kasabian fan for the duration of the show. It didn’t matter that I knew virtually nothing about them. I knew I loved the people I was with. I was happy to be well enough to even go to a concert. So I was a Kasabian fan. Sometimes it’s enough to just believe something, even when there’s no good or logical reason for it. Believing is enough.

We stood right up front and jumped up and down and screamed at the band. I really shouldn’t have sang along since I knew literally no words but that has never stopped me before. I jumped and bounced and screamed for two and a half hours. The energy in the crowd was amazing and the show was great.

I said to Alli tonight that I think that concert years are like dog years. I am therefore 132 concert years old. It sure as hell feels like it. I’m going to need a cane to walk tomorrow. No thigh blaster workouts necessary.

The Portland Sisterhood does Kasabian

I have a Wall of Hopeful Things in my home office space, where I do most of my MastAttack work. It is covered with things patients or parents have sent me. There is a trinket dish on my Wall of Hopeful Things that says, “It is not enough to put your heart and soul into something, the really important things require much more than that.” I think of this as the MastAttack motto. You can’t build something without leaving pieces of yourself among the blocks.

In the last few weeks, I have painstakingly mapped out the next year of my personal, professional (work) and professional (MastAttack) worlds. I have monster goals for MastAttack for the next year. I have started putting together the materials for the course videos for the spring. I have been networking a lot to work towards some other MastAttack goals. I have professional development and program goals at work. I have lots of personal things that I have forced myself to find time for. It is an intimidating amount of life I am trying to fit into these time constraints. But I decided that I could do it, and as soon as I did, I became capable of it. You have to believe it and hold your nerve. So here goes nothing.

Hope you all are having a super weekend. Be on the lookout for some MastAttack announcements this week.

It is not enough to put your heart and soul into something. The really important things require much more than that.

Cobalt

The university I went to had a nuclear reactor. A real one, underground. The radiation source was an unstable isotope of cobalt that glowed an eerie and otherworldly blue at the bottom of a huge pool.

I was a student there a few years before I found out. I walked over it on almost a daily basis.  I had no reason to know it was there until I did and so I didn’t. Naturally, as soon as I found out about the (really woefully and shockingly insecure) nuclear source under my campus, I became very paranoid that it would meltdown or be hijacked by terrorists. I wonder how many hours I have spent worrying about this.

I found out today that a friend of mine has cancer. She told me about her recent appointments and test results. We talked about the grieving process when you receive seriously health news. She hadn’t been having symptoms and the diagnosis took her completely by surprise.

We make a lot of the connection between our minds and bodies. We feel that this linkage is not only real but deeply spiritual, that it is the basis for our awareness of our very selves. We expect there to be signs when something is wrong with our bodies. We feel that we will intuitively known something is off when our bodies harbor such significant health issues. When we don’t, the betrayal is even more searing. We feel that we have failed ourselves in some way and that we have no one to blame but ourselves.

It is harder to reconcile your reality with your experience when the physical state of your body is at odds with your experience of living in it. It makes you wonder what would have happened if you just didn’t know. How many things do we notice only because we know this thing? How many things are significant only because we know this secret hidden inside ourselves? When would you have started to feel sick? Would you ever have noticed otherwise?

I am a scientist and the currency of science is inherently facts and truth. I have always felt it is better to know the facts both in my work and in my health. But it does make me wonder how much time I have lost to perseverating about unlikely worst case scenarios because I demand that knowledge. How much time I have spent being afraid of these things that never came to pass and probably never will? How long have I looked at this shimmering blue and convinced myself of a danger that was never real?

Hole

Ports were developed expressly for the administration of chemotherapy to cancer patients. They addressed a couple of specific issues in cancer care.

Chemo can be very damaging to blood vessels. Many drugs are caustic and can cause sclerosis of the blood vessels and damage to soft tissues around the vessels. Port lines terminate in very large blood vessels close to the heart so the risk of damage was much lower.

Chemo patients are also at a significantly increased risk for infection. Ports are implanted between the skin and the muscle so they are entirely within the borders of the body. In order to use the port, you push a very large needle through the skin and into the port. This is called accessing the port. When you are done using the port, the needle is removed and the port no longer has contact with the outside environment. They were designed to be accessed occasionally for treatment and to be deaccessed as soon as that treatment was done.

Like so many other things in medicine, ports were not designed with mast cell patients in mind. I am part of a cohort of patients that currently have ports for chronic, continuous use. My port is accessed all the time. There is a needle going through my skin and into my port all the time. The needle is changed once a week and I take the needle out for a few hours sometimes if I am going swimming or taking a bath. Otherwise, the needle is never out.

My port is a bit unusual in that it is very difficult to get the needle into the port without going straight in through one spot. Most patients who have accessed ports move the needle to a different spot when they change it weekly. This allows the skin to heal a bit between accesses. This has never worked for me. For this reason, over the last three years, I have developed a literal hole in my chest over my port where the needle is placed.

Last spring, I accidentally tore the needle out of the port. It made a hole that was already pretty big much bigger. I started deaccessing for a few hours a couple of times a week to try and help the skin to heal. I slathered cromolyn cream all over it and hoped for the best.

In June, I had a temporary IV line called a midline placed in my arm so that I could stop using the port for a few weeks and give my skin a rest. Unfortunately, that didn’t go well. Aside from all the pain in the ass things about having a line in your arm (which I had forgotten), using IV Benadryl through the short line caused phlebitis, a form of vasculitis that affected the vein where the line terminated. I was diluting it to a ridiculous extent (1:50) and it was STILL causing really severe pain both while I was pushing it and for hours afterward. We pulled the midline after a week.

The result of always accessing in the same spot is not just a hole but a hole surrounded by thick scar tissue. My nurse was able to get it accessed at different angles by pushing through the scar tissue but it was shockingly painful. The port was getting inflamed and it was getting to a point where the inflammation looked just like a pocket infection. It wasn’t infected but the fact that I could no longer tell the difference was alarming.

The pain surprised me. I can tolerate a lot of pain. This is unbelievable. The hole is now large enough that my body recognizes it as a wound. I have been really tired and achy lately and I think it’s because my body is expending energy trying to close this hole.

I did not expect the emotional effects of this situation. Memories from 2014 keep cropping up. My life is unrecognizable compared to the life I had when it was placed. I knew it was necessary but I was really nervous. I didn’t like having a PICC line but I was finally used to and troubleshoot it without panicking. I was worried that the port would get infected or I wouldn’t be able to access it myself. It was the coda to a year of abysmal health.

It’s funny to reminisce about how anxious I was about getting it placed because my port is my lifeline now. It gives me confidence. It makes me feel secure. I have travelled to the other side of the world with this port. It has allowed me to work full time. It has saved me countless ambulance rides and admissions. It is part of me now, a part that has given me back a lot of my life. A part I don’t want to use.

Because we are concerned that the hole makes me much more susceptible to infection, we decided to just cut our losses and pull the port and place a new one on the other side of my chest. I will be getting this done in the next few weeks. I think things will stabilize without the inflammation.

For me, Septembers will always be tied to pumpkin flavors, the smell of falling leaves, harvest moons, and ports.

Mastos abroad: The China Chronicles (Part 1)

It surprises me how often people think I am unflappable. A lot of times people asking questions say things like, “I know this is stupid,” or “I did a really stupid thing” or “You are going to think I am an idiot.” We all do dumb things sometimes. We all get confused.

I do not think you’re stupid and I do not think you’re an idiot. In that spirit, I would like to share some stories to ensure you that sometimes I am not just flappable but next level flappable. I flap. A lot.

People who have been following along for a while may remember that I went to China in 2015. Seeing the Great Wall has always been a dream of mine. I am fortunate to have a dear friend who lives in Hong Kong for half of the year. She has MCAS and we met because she came to Boston for treatment. She invited me to Hong Kong and suggested we take a tour to mainland China. After spending a few days in Hong Kong, we flew to Beijing on November 10.

There really was no way to prepare myself adequately for mainland China. Hong Kong struck me as a European city with Chinese sensibilities. Mainland China could be compared to nothing. It was like an all you can eat buffet that somehow also had a scarcity of food. I’m amazed I didn’t see anyone get run over while I was there since the locals just hurled themselves haphazardly into traffic. The pollution was unlike anything I have seen before and the entire city smelled like coal.

There was no social understanding that people should be orderly and wait in line or take turns. Louise, our tour guide, warned me, “Do not be a gentle lady.” I am not a gentle lady so I was tossing old ladies out of the way in no time. I will remember this for the rest of my life because it was the only time I have ever been called gentle and it will probably never happen again.

I had wanted to travel to Asia for years before I actually got there. The main reason I hadn’t gone was because my health is unpredictable and I was afraid to receive medical care there. I was also worried that they would confiscate critical meds or supplies. I don’t speak any Asian languages and I was concerned that I wouldn’t be able to communicate effectively in a health care setting.

Because of how nervous I was about needing medical attention in Beijing, I basically traveled there with nothing but meds and supplies for both routine use and emergencies. I flew with a set of three nesting luggage pieces, my backpack with infusion meds and pump, and another bag. The only things I brought that weren’t meds or supplies were three changes of clothes, sneakers, spare glasses, my journal, an electrical converter, a plug adapter, and an iPad. I bought everything else there or got it from Pat.

The other thing that had held me back from travel to Asia was food. I couldn’t eat soy, seafood, vinegar, or fish sauce. It is almost impossible to find food in China that does not contain any of those. I was fine in Hong Kong because I was staying at Pat’s house and we had ready access to fresh groceries and a full kitchen. I didn’t have those things in mainland China and didn’t expect to have them.

The staff at our hotel (the Peninsula) were unbelievably helpful and accommodating of our food restrictions. They came to our room to get a list of what we could safely eat and what we could not. They made us boxed lunches to bring with us on the tour. They made breakfast items that weren’t on the menu because I couldn’t tolerate anything else. Our dinners were carefully made without contamination. We didn’t need to get food anywhere else. Truly, it was an amazing experience. They could not have been more accommodating.

I sometimes print images of places I want to go and paste them into my journal as a reminder to live my life with purpose. The Forbidden City was one of those places. We visited it the day after we arrived. It was a palace for the Emperor that was more likely a small city. The day after we arrived in Beijing, Pat and I passed under a spectacularly large picture of Mao Tsetong and entered this magical place. It was stunning and amazing and better than I had imagined.

The following day was a day I had waited decades for. I was finally going to see the Great Wall of China. Our tour guide recommended that we visit the Wall at a less visited site called Mutianyu to hopefully avoid big crowds. As we drove out of Beijing proper, Louise told us things about the neighborhoods we passed and stories about Chinese history. We chatted about the effects of Communism on her generation versus her parents’ and grandparents’. She was intelligent and spoke really impeccable English.

I lost most of my hearing years ago. I can’t hear high pitched sounds really at all. As we were driving out, Pat turned to me and asked, “Can you hear that?” I couldn’t. I asked what it sounded like and she said she wasn’t sure. She kept hearing it. I kept not hearing it because Deaf. She started looking around in the car. “It’s like a chirping,” Pat explained. Finally, she asked Louise if the chirping was the ring tone on her phone.

We were pulling into a parking spot when Louise answered that she thought it was the driver’s. She asked him in Mandarin if it was his phone. After he parked the car, he reached into his jacket pocket.

I wasn’t looking at them when he pulled it out. I turned back to find him holding out a small cage with an enormous cricket in it. This was the biggest cricket I have ever seen. Easily the size of my palm and black. It was so large that you could see all the features of its creepy little face including its eyes looking back and forth.

If I had been aware that I was going to encounter a cricket the size of Rhode Island on this trip, things might have gone better. But I wasn’t so they didn’t. I’m not sure exactly what happened but I screamed and starting flapping my hands hysterically while making a noise that was sort of like turkeys gobbling.

“Is that the international sign for “get that thing the hell away from me?” Pat asked. It was in fact the international sign for get that thing the hell away from me.

I felt it best not to make eye contact with the cricket as it sized me up. The driver explained that this cricket was a fighting cricket and that people would have cricket fights and bet on the outcome. He kept it in his pocket in case he came upon an impromptu cricket fight. You know. Just to be prepared in case that happened.

Pat asked if this cricket was a champion. Louise translated his response.

“He wants you to know that yes, this cricket is the champion, and also, that if this cricket bites you, you will bleed.” And you know? I believe that. It had to be carried around IN A CAGE. This thing was clearly a menace.

 

This is a different cricket our driver brought the next day. Sadly, this cricket is not a champion.

 

 

The Great Wall was a good distraction from the fact that this cricket was sharing the van with us. It was so foggy. Like walking into a cloud. It seemed to swallow the wall and me with it in the cold damp. After we took the cable car down from the Wall, Pat and I went into a shop looking for something to warm us up. There was a little coffee shop in the visitor’s center. I ordered a small coffee to have something hot. Pat did the same. We sat at a little table outside drinking our coffee while we waited for our driver to pick us up.

For the record, this cup of coffee was the ONLY thing I consumed in Beijing that was not made by the Peninsula. Somehow, despite my excessive fretting over food and drink contamination in China, I decided that this shady little café was definitely capable of making me coffee safely and that it would be fine. I have no excuse. I just flung caution into the polluted Chinese wind.

 

The Wall disappearing into the fog

 

 

As I sat there, sipping my coffee and staring into this grey abyss, I thought to myself, “This is a lot sweeter than I thought it would be.” This didn’t worry me at all. I have no defense. I continued to drink it. I drank the whole thing in about five minutes and got into the van to go the Ming Tombs, the next stop on our tour.

As you might be expecting, that van ride turned into a circus real fast. About fifteen minutes after drinking the coffee, literally within seconds of each other, Pat and I both started having symptoms. It quickly became apparent that this coffee wanted out of our bodies. For me, the coffee felt that vomiting would be the path of least resistance. For Pat, it charged through her GI tract all the way down.

The road we were driving along was punctuated by people sitting on the side of the road and burning hell money, a ritual that they believe will provide their deceased loved one money to spend in heaven. Literally every 100 feet or so had what looked like a small garbage fire being tended to by locals wearing masks. When we finally got to a stretch of road that wasn’t hosting small fires of fake currency, I told Louise that we needed to pull over. I threw up on the side of the road. I threw up enough that poor Louise got out of the van to pat my back while I puked everywhere. Making memories.

I felt better after I threw up but Pat was still having some problems. Our tour guide assured us we were only a short distance from the next stop. After fifteen very long minutes, we jumped out of the van and ran to the bathroom. We told the driver to park as close to the bathroom as possible in case we needed to get out of there quickly. Our tour guide ran with us while the driver went to find a parking spot.

Once Pat was safely in a stall, I walked out of the bathroom to see if the driver had found us. As I was looking for him, the gates flew open on the far side of the parking lot as a van came screeching through the fence. The van pulled up close to the bathroom and slammed on the brakes. The driver jumped out and opened the van door so his passengers could get in quickly. It was our driver.

The good news is that Pat did not shit her pants. The bad news is we were trapped in that bathroom for a while. There were a couple of chairs near the bathroom entrance that we commandeered for a while while we waited to see if this was going to pass or not. Long suffering and committed Louise knelt down on the bathroom floor holding a map and calmly telling us the history of the site while we waited to see our intestines would continue wrenching. We learned all about the Cultural Revolution and how adherents to communist philosophies had permanently damaged ancient monuments and works of art. On the bathroom floor. At a very busy tourist attraction.

After about half an hour, we told Louise that we were ready to brave the world outside of the bathroom. She was very pleased by this turn of events. She led us into the main courtyard and told us about the people entombed there. There was a door where it is traditional for people to walk through, then to walk backwards and hop over the threshold backwards so as not to be trapped in the land of the dead. I was feeling pretty cocky since I hadn’t puked in 40 minutes so I went for it. (I did not get trapped in the land of the dead, if you’re wondering. I think.)

I looked at Pat to ask her if she was feeling up to it. Her response was, “If I don’t keep both feet on the ground, something is coming out of one end or the other and I’m not sure which one.” She’s a lot more practical than me. We carried on with the tour.

Pat and I had some other adventures in China that I’ll get around to writing about someday. I’m sure we’ll have more if I ever get to Hong Kong again.

Anyway, see my point? I’m totally flappable. Your questions are not stupid. You are not stupid. It’s all good.

More posts about my trip to China here:

Great Wall

Just before waking

River stones

Eight

I went to the New England Aquarium yesterday afternoon with my two nieces, Miranda and Amelia. Miranda is 13. Amelia will be 9 next month. On our way to the Aquarium, Amelia asked who the people coming to Boston to protest were. I told her that some of the people who announced they were coming were verifiably white supremacists. I gave her examples of what certain groups believed about other people in society. I told her that many more people believe that you should treat everyone the same regardless of race, religion, gender or sexual orientation.

I stopped short at the end of that sentence in a way that surprised me. My body literally would not push out the next few words. What I was about to say was that you should treat everyone the same whether or not they have disabilities and differences. But Amelia already knows that. She was sitting next to her sister, and her sister has physical and intellectual disabilities.

In the US, disabled persons are considered a protected class. This basically means that it’s harder to discriminate against someone based upon their disabilities. In reality, it’s very hard to enforce. It can be very difficult to prove that you were discriminated against directly because of your disabilities.

Disabled Americans have won important battles in the last few decades. We saw the passage of the Americans with Disabilities Act. We have access to Family Medical Leave Act if your employer meets certain requirements. We have legal rights to some accommodations at school or work. Our situation has improved without a doubt.

But disabled people are still trying to navigate a society that views them largely as a nuisance at best and a freeloader at worst. There is still open scorn for people who aren’t able bodied. It is politically incorrect maybe, but only just. You are constantly accused of wasting society’s resources. You are irritating. Annoying. If you don’t tell people about your illness, you’re hiding things. If you tell people about your illness, you’re always talking about your disease. If you post about your disease, you are looking for attention. If you don’t post about it, people message you privately for savory details. You can’t win. You seek validation and acceptance with every interaction and you seldom find it.

I couldn’t get the words out yesterday because Amelia is going to know soon anyway. The days when she is not regularly confronted by the marginalization of disabled people are rapidly coming to an end. But she has still has some days and I couldn’t take them from her.

If you live in the world, you may have heard that there was a political rally slated to happen in Boston today. Some high profile racist groups had announced their intentions to attend. But so did tens of thousands of Bostonians. I wanted to go so badly. But I can’t. I can’t walk into a charged situation where I could be robbed of my immediate access to lifesaving medication or emergency care. I can’t risk getting maced or hit with tear gas.

Because I can’t, people often feel that I don’t care enough about standing up for my beliefs and values. And they often feel like it’s okay to say that, too. Because there aren’t really any consequences except my hurt feelings. Society just expects you to fit into this role and if you can’t fulfill those expectations, you are difficult or whiny or weak.

Today was a beautiful day in Boston. I spent it with my mom, my sisters, my niece and Kristin’s mother in law to be, Ellen. Strong, intelligent, hardworking women all of them. I thought about a day in the future when Miranda might help Amelia into a wedding dress and when Amelia would be a champion for her sister.

Those days are coming. But today, she gets to be eight.

 

Waves

I used to think a lot about death. I imagine I still do think about it more than most people. It is something that both comforts and terrifies me. On the hardest days, it seems like a gift. On those days, I just want to lay back and close my eyes and sigh my last breath and be transported to oblivion. A reprieve. Nothing. But on every other day, I just want to get survive until tomorrow.

I sometimes find myself passing these thoughts over each other until they have lost any sharpness and danger. What if this kills me? And hiding just under my breath, in that space where my mind hides its deepest unspoken mysteries: what if it doesn’t? What if I am never saved from this?

The fall of 2013 was a big turning point in my health. It was the first time that I was so sick that I thought I would die. Not when I got my colostomy. Not when I was having severe mast cell attacks and anaphylaxis that debilitated me for weeks before I was diagnosed. Not when I had a GI bleed that lasted for months. In the fall of 2013, for the very first time, my pain was my worst symptom, worse than the exhaustion. And when I was in bed and in so much bone pain that it hurt to stand, so much that I couldn’t go to work, I thought that this must be what it feels like to be dying.

2014 was mostly a blur punctuated with hospital stays and epipens. So, so sick. Vomiting blood and bowel obstructions and anaphylaxis. I got a PICC line and then a port. I started using IV fluids and meds. I drafted my first will and advanced directive in 2014 at the ripe age of 30. I organized my whole life around my disease. I literally wrote letters to friends and family in case I died. It was bad.

But then something happened that I did not expect: I got better. I was still pretty sick but I no longer felt like I was constantly flirting with death. I was able to travel a little with heavy support from my friends. In 2015, I had GI surgery and worked very hard on reconditioning myself. And I got even better. Like, a lot better. That lasted for over a year until last fall. And then this past spring, I recovered. I would say I am in probably the best health state than I have been since 2013. These things come in waves for me. Feeling better doesn’t always last but feeling like I’m dying doesn’t always last either.

Today, I was able to meet a mast cell friend who was in town for an appointment. Her illness and diagnosis are much more recent. Like most mast cell patients shortly after diagnosis, she is still in a really difficult spot. I told her about my own ups and downs with mast cell disease. I told her that she wouldn’t always feel this way. And I’m sure she won’t.

I wrote this post to say something that I don’t think gets said often enough in this community: That it won’t always be like this. You won’t always be like you are right now. There will be improvements and there will be setbacks. But whatever reality you are living right now will assuredly be replaced by something new. And this means that every day, you have a reason to be hopeful. Just get through the day. If you can get through it, tomorrow could be the day that you could get better.

Don’t give up. Stand up and fight.

It gets better.