Skip to content

my feelings

River stones

The day I was diagnosed, I left the hospital holding a piece of scrap paper with notes all over it. I occasionally come across it again while looking for reports in my massive collection of medical documentation. The paper is soft along the folds, but the ink is still bright. Words jotted down haphazardly surround a crude drawing of a mast cell heavy with granules. Words to explain my disease and its accompanied wreckage.

These words meant more than too many mast cells, too much activation. They meant the pain and stress of being sick. They meant all the things I had lost. They meant fear and loneliness. They meant desperation and need for validation. They meant that this was real and that meant that it wouldn’t go away. The words were arbitrary. They had no power on their own. They had power because of what they represented in my mind.

In the weeks that followed diagnosis, I said the words out loud when I was home alone. I turned them over in my mouth until the edges were smoothed, the jaggedness smoothed like a river stone.

I arrived in Beijing on Tuesday afternoon. It was cold and raw there, the kind that makes every movement feel heavy and dully painful. The city was overlaid with soft fog, fluffy and moist. It looked sleepy. Our wonderful tour guide apologized for the poor visibility but I liked it, this ethereal dressing. In fairy tales, that’s where magic happens.

On Thursday morning, we went to the Mutianyu portion of the Great Wall. We walked up to a cable car that delivered us into the heavy mountain fog. We made a short climb up slick stone steps to reach the wall, visible only in glimpses through this wet cover.

The shrouding was so complete that I could almost believe that if I stepped off the wall into the fog, I just might disappear. We were high above the world. We were in the sky.

There was a sharpness to walking through the mist in this place that had borne witness to eons of man. I can’t find the right words to express how it felt to walk along the Great Wall. If let down was a positive feeling, it might feel like that. I was awestruck by this experience. It could not have been more amazing for me. It feels like putting down something I carried for so long that my body began to accept it as its own. It is the knowledge that after so long, I will never again see the Great Wall for the first time because I already did.

I saw the Great Wall after years of doubting I would see it at all. I did this impossible thing. I wanted to cry tears laden with the salt of all the impossible things I had hoped for in that place where it seemed the very mountains were crying, too. Hope is the only way forward, but it can be so, so heavy.

Our tour guide explained the function of the Wall, its amazing length and structure. It was designed to prevent invaders from returning, watchtowers manned with sentries. It surprised me that the mountains themselves weren’t enough protection without the wall. I’m not sure that the wall was ever any better than the mountains alone. But the people believed it did and that made them better. Maybe it gave them hope.

A lot has changed since I was diagnosed. The words I smooth are different now. They are still painful. But if I think of the coolness of the stone, the feeling of another world encroaching, the realization that dreams come true, maybe when I say these words, they can mean that, too.

image

 

image

 

image

Raw

Summer packed up quickly. Humidity and too hot days were gone in an instant.  The days are short now, the last waves of golden autumn sun just barely shadows when I get home from work.  It was below freezing as I walked to work yesterday morning. Two nights ago, when I stepped outside, it smelled like snow.

I blinked and suddenly the ground was covered in dry leaves, the chorus of fall sung in deep musical gusts.  It really seems like just a moment ago I was eager for summer to end and now it has been gone for weeks.

This year’s autumn has been fraught with emotions.  I am having some big feelings these days and they are leeching from my other reservoirs: patience, kindness, love.   But mostly patience.  Loss of patience is where it shows the most.

We were so scared that Seth would die, and he didn’t but we still don’t really know how to feed him.  I read papers by the hundreds, make notes, send emails.  He is better but not good.  We still don’t have a good plan.  What happened with Seth felt immediate, traumatic. Like the pain of landing hard after falling, hands and knees stinging, blood seeping through the wounds.  Startling, alarming but survivable.

Then I picked up my phone and read a text telling me that my friend was having a bad reaction in an emergency room.  I relive that night constantly.  The back and forth, my let’s not panic attitude when we should have been panicking.  I am too used to this, I have seen us all be fine after so many panic-worthy episodes.  I am too used to us all being fine.  But we should have been panicking.  And by the time we understood what was happening, she had already had a stroke in her brainstem.

It feels so slow in my memory, like a parchment map being slowly unrolled.  By the time we knew where we were, it was too late.  There is this heavy sorrow inside of my heart that makes it hard to breathe.  We didn’t even know where we were and now she is locked inside of her body. It is suddenly the end of October and the sorrow doesn’t feel lighter. I am just learning to carry the weight.

Everything is a fight sometimes.  Every. Thing.  Insurance companies, doctors’ offices, hospitals and pharmacies all call to inform me about the ways in which bureaucracy and the broken American health care system is messing up my care again.  Not in a way that will kill me, just in a way that requires a patience I no longer have.  My eye has started twitching again when I have to explain something about my healthcare again to someone who has already heard it and was previously unmoved.

Someone called me today to say that they could waive part of my bill. I had a panic attack in a grocery store, because even receiving good news about my healthcare is too stressful right now.

I was medically cleared to fly to China by all relevant medical professionals but had to undergo a medical clearance by the airline since I needed to use an infusion pump during flight.  I filled out forms, provided notarized letters.  In their infinite wisdom, the airline decided it wasn’t safe for me to fly alone.

I paid a visit to my PCP’s office after having a mid-level nervous breakdown on the phone with a nurse about the fact that the airline may not let me go to China. I apologized for getting so upset.  While she wrote another letter for me, I told her that mast cell patients get labelled as psych patients a lot because we look fine until we are in liver failure or having a stroke. I told her about my friend.

She called the pharmacist working downstairs and he came up to notarize her letter.  After some back and forth, the airline relented and agreed I can fly with my pump.

My skin is burning this week. I am flushed a deep pink all over.  I realized today that I am reacting to my ketotifen after eighteen months of taking it every day without an issue.  More phone calls with my fingers pressing on my eyelid in a vain attempt to stop the twitching, heat creeping up the back of my neck.

Last week, some guy kept obstructing my path down the sidewalk in an attempt to make me donate to some charity.  When I finally maneuvered around him successfully, he made a snide comment.  I turned around and yelled at him.  Because get the fuck out of my way.

I am grieving and angry and impatient and raw and exposed.  In two weeks I will be in Hong Kong and it feels wrong that I am stable enough to travel to Asia, a sort of betrayal and survival’s guilt.

 

 

 

 

Great wall

I have always wanted to travel. From a young age, I was fascinated by language and traveling seemed an extension of that, places to hear foreign words and see strange alphabets. When I was 19, while sitting at my desk one night, it occurred to me that there was no reason I couldn’t just save up and go wherever I wanted to. I planned my first trip abroad and spent 26 days in Europe the following summer.

Traveling made me happy in a way that I have never been able to replicate in any other way. Over the next several years, I spent all my money on travel. I didn’t care if I ate the same thing every day or drove a junkbox. Nothing mattered to me like the joy of being in strange, faraway places. I started planning my magnum opus: a nine month trip around the world that took me through six continents. It was slated for January 2011.

In 2009, I lost a lot of my hearing. I spent all of the money I had saved for the trip on medical expenses, much in an effort to stop my rapid march towards deafness. I lost my hearing anyway. I haven’t travelled out of the US since 2010.

For a while, I went through the motions, even when I was clearly in no shape, financially or physically, to go anywhere. I bought guidebooks, priced flights and drew maps of places I hoped to visit. I printed out pictures of every country in the world and glued them to cardstock. I hung them in my apartment, passive encouragement that I would once again be strong enough to see some of them.

Then my health declined rapidly and I was in massive pain and puking constantly and unable to go to the bathroom. I stopped everything. I couldn’t fly anywhere anyway, so there was really no point. I couldn’t even think about it. I was so tired and the pain was so bad and I was scared. My illness was this huge wall around my life and I couldn’t even try to climb out. I could only hope not to be buried by it.

Last year, I decided that it was time to try again. I flew to Seattle with my best friend, emboldened by my ready IV access and growing restlessness. I took a few other domestic trips, Colorado, Florida, California. My health was mostly fine and when it wasn’t, I knew how to manage it with medication to stay safe. Every new trip gave me confidence that I could be independent in travel, provided I had a predetermined, safe place to stay and eat, and someone to help me if I got sick. The majority of my luggage was medication and medical supplies and I didn’t care.

In less than a month, I will be flying to Asia and fulfilling a lifelong dream of seeing the Great Wall of China. It has been logistically complicated, with medical notes and forms and notaries and translations and all the doctors. I will be taking a sixteen hour direct flight from Boston to Hong Kong, where I will spend some time with a dear friend before we travel to Beijing and then the Great Wall.

I feel it again. And even though I’m scared, I am happy.

Happiness is a kind of fighting. It is a way of saying that maybe today was miserable and so were a lot of yesterdays but maybe tomorrow will be different. It is the refusal to be subjugated by pain and fear and uncertainty. It is the memory of joy and the knowledge that even if you don’t believe it, you could again. It is the way memories catch light in your mind, a technicolor feeling that goes on forever. It is the only fight that matters.

Some things are best viewed not as they are, but in the light of a prior incarnation and the hope that it could reascend to this splendor once again. It took years, but I climbed out of the high walled prison of this disease and next month, on the other side of the world, I will put my hands on another Great Wall.

The violence done unto us

It was a Saturday when I found out about Seth. One of my masto friends called to give me a breathless update at almost 11pm.

“He’s in liver failure,” she said with a rising lilt in her voice, the kind that barely masks panic.

I laid down on my living room floor while we talked. Seth is my friend who has MCAS and he is three years old.

Less than 48 hours before, he had begun presenting with severe neurologic deficits. By Sunday morning, he could no longer speak, see or clot properly. He was air lifted to a different hospital with tanking vital signs.

The next several days were a blur, more one long impossible experience than individual actions. Things were grim. For a time, it looked very much like he would not survive.

Seth’s parents are good friends of mine. Our friends and I communicated every piece of information to each other and anyone we thought could help. I woke up to messages every morning asking if there was any news. I was 3000 miles away and out of helpful ideas and utterly powerless.

By some miracle, Seth did not die. He is still in the PICU and will need involved care for some time. There is still not a great treatment plan for the future. But he is alive. And he is still Seth.

On Friday, I found out that my friend, the friend who called me about Seth, was having her own medical event. Things were fairly progressed by the time I was in the loop. It was literally sickening. A couple of days passed until I got a phone call telling me she had a catastrophic injury. I ran to the bathroom and threw up.

There are moments when you lose pieces of yourself. Sometimes it is organic, a skin shed as you move forward. Sometimes it is violent, a piece carved out with deep gouges, more than you could afford to lose. A piece you never get back. A piece that leaves a hollow so deep that no matter what you use to shore up the edges, it never feels strong again.

I want to go back to the time before this violence but I can’t remember what it feels like. It’s already gone.

These are my people and they are every bit as connected to me as the family I was born into.

How could this happen?

The only constant

Summer is over.  Maybe astronomically speaking it’s not, but it is.  When you close your eyes on August 31, warm windy days and bathing suits and beach towels and eating outside are all packed away by summer faeries and pushed to the back of the closet.  When you open your eyes on September 1, it is fall.

I had an amazing summer.  I could never have imagined that I would have a summer like this again.  I went swimming in the ocean and went to a water park and got sunburnt and walked around in the sunshine. I worked a lot and took the train and ate solid food and exercised.  I still have mast cell disease and it will never go away and no, my GI tract does not work well.  But I feel better in a lot of ways.  I feel better than I thought I would ever feel again.

Last week was a difficult week for me.  I have been pushing it the last few weeks, trying to do more than I probably should.  I started feeling gross again, burny hot skin, really bad nausea, more GI trouble than usual.  I started needing to sleep a lot longer.  It was so defeating.

I crawled into bed one day and lay awake, too tired to sleep, reliving the last several months.  I was scared.  I was scared that this was over.  I was scared that these three months were all I was going to get.  I was scared because it felt like I was finally living again and losing that would be too painful.  Because I was finally entertaining the thought that I could go back to school and travel and have fun without risking ending up in the hospital.

Last Friday, I realized I had a fever.  I was sick because I had a cold or something.  It hadn’t even crossed my mind that it was anything other than mast cell disease.  I slept most of this weekend and am getting better.

It only took a few days for my dreams to turn from school and travelling back to a stable accommodating job with good insurance.  You know.  My fall back dream.  The dream that I will retain the means to treat my myriad health issues and live independently in a clean, safe place.  That dream.  It sounds silly and narrow to people who have never been sick but let me tell you, it’s not silly to me.  Even when I am feeling better, even when I think I could do things I put aside long ago, even when I am embarrassed to admit it, this is my dream.  This is the dream that needs to come true for any other dream to be realized.

I like my life.  I have a great job.  I have an apartment I can afford in a convenient location.  I have a great support system.  I receive excellent health care.  I can walk my dogs at night.  I can pay my bills.  I am lucky.  I am so lucky.  And it feels wrong to risk losing all of these things to pursue another dream that could prevent me from getting the care I need.

So I push these thoughts aside and feel grateful for all that I have.  I focus on living the life I have now and try not to rock the boat.  I don’t make any changes.

There is this idea that by doing nothing, we can preserve our lives just the way they are.  That if we don’t change, we are guaranteeing the future provided by steadily travelling this same road.

It doesn’t work that way.  It never did.  Everything changes.  The only constant is you.

Yesterday I found out about some changes at work that will directly affect me and how I continue to do my job.  Maybe not in a bad way.  I went back to my desk and cried for a few minutes because I’m a crier and I get very attached to people.  Then I got up and got lunch and went back to work.  I was sad and anxious but also a little relieved and excited.

I don’t know the name of this feeling.  But I do know that I could choose to stay here in my little apartment with my job that I love close to my family and friends and doctors.  I could make that choice and it could all change anyway.

And I could make the choice to give all of this up and I could find myself without healthcare or money or a home.  Or I could find that I give it all up and succeed.

It feels like the stakes keep getting higher and higher.   But that doesn’t mean I shouldn’t try.

The shadow edge

I was in the process of applying to medical school when it started to become obvious that I was sick. I chose not to complete the application process out of fear that I would be accepted and too sick to attend. I ultimately got much worse and would definitely have been too sick for medical school. As it turned out, I was sick for several years. And in the last couple of years, I have been too sick to do much of anything.

I am 31 years old. I finished school almost eight years ago. I have been sick for that entire duration. Somehow in my mind, being sick is recent, a brief interruption to my normal state. Eight years is not brief. I have now been sick longer than it took me to complete my undergraduate and graduate degrees.

In the middle of those years is the time when most people transition from one stage of life to the next. It is the time when you take fun vacations, go to parties, focus on your career, meet your significant other, marry. They achieve their earlier goals and move onto the next ones. They grow up, calm down and settle down.

I was sick for those years and never really made that transition. There is still a riot, loud and unyielding, in my heart.

I have dreams for 31, but I also had dreams for 25 and 28. When do you have to let them go? At what point do you not have enough time?

In some ways, it is easier when all of your dreams are washed away at once. It is harder to choose which dreams to lose. It is hard to accept that those years weren’t lost, but that they prevented me from achieving these things that are so important. Those years may prevent me from ever achieving some of them.

I feel a lot better these days than I have in a couple of years.  But now that I feel more functional, I find myself constantly taking inventory of life, of the things I never did and the things I might still be able to do, if I start right now.  It is overwhelming sometimes.  It feels like the shadow edge of hope.

I knew I would one day run out of time to do everything, that eventually pushing things into the future would mean they fell over the edge and disappeared forever. It just happened sooner than I thought.

This universe inside

Last summer I went to Maine with my sister, cousins and some friends for my cousin’s bachelorette party. I had a PICC line and couldn’t swim, was throwing up most of my food and the loop of bowel behind my stoma twisted on itself. I slept a lot and spent all day in the hotel room with air conditioning in order to muster enough energy to go out at night. I still had a good time largely due to good company, but it was a good time I fought pretty damn hard for.

This past weekend, I went back to Maine with the same group of girls with a couple of substitutions. We stayed in a hotel with a pool about 200 yards from the ocean. It was sweltering in a way that makes even healthy people tired. I crossed my fingers and hoped for the best.

On Saturday night, we all went out and had a nice dinner at a restaurant in town. After, I went for a long walk before bed. It was still hot and sticky out, but the wind blowing off the ocean felt like a big hug. It was one of those nights when you feel connected to the world. The waves crashed on the beach, this soft, wet percussion. The stars were bright.

It felt like I could look all the way across the universe. It felt like I could look all the way across my universe, the one I contain inside my body. I walked along the water and thought about my limits, the limits of that expanse.

The next morning, I deaccessed my port, put on my bathing suit and sunglasses, and went to the beach. I waded into the ocean. The water was cold, but not frigid. I floated in the shallows, rising and falling with waves. It was very serene.

I took some IM benadryl at lunch since I was deaccessed. I went swimming in the ocean again. I swam in the pool. I reaccessed my port. I ate a fancy dinner at a nice restaurant. I fell asleep at a reasonable hour, slept all night and woke up in the morning. The trip was completely uneventful concerning my health. My body worked fine the entire time.

It doesn’t feel like this is my body. It is like I borrowed one, a better model. It continues to demonstrate its new durability. Eating sweet potato fries with ketchup. Taking the train to and from work. Being in the office 3-4 days a week. Walking in oppressive heat. Swimming in the ocean. Thirty minutes of cardio. It is tolerant. Sturdy, even.

I am torn between being cautious in this capable new vessel and pushing all the limits. I am afraid of not knowing how far I can go. I am scared that all of this will go away.

But it’s here now. It feels like the universe inside me is expanding, the boundaries pushed further away with every beat of my heart.

Phantom

I have always been fascinated by both the human body and the diseases that affect it. When I was about ten years old, my parents bought me a medical dictionary. I read it cover to cover. I wrote little stories about people with Legionnaire’s Disease and Tetrology of Fallot, describing the symptoms and treatments in vivid detail.

It was in this dictionary that I first read about phantom pain. It always made a weird sort of sense to me. Bodies are creatures of habit, just like us. Of course your body expects to have all of the parts it started with. Of course your brain would assume it was merely misinterpreting signals when suddenly a limb was missing. The alternative was too awful to consider.

It never occurred to me that the body could experience phantom pain from a part of the body that was never supposed to exist. As soon as my epidural line was pulled five days post-op, I started having severe sporadic pain where my stoma used to be. It was distinct from the other pains – the burning in the lower colon, the sharpness in the rectum, the soreness near the incisions.

This was something different. It felt like when my body tried to pass stool through the stoma, but couldn’t because of an obstruction. It was the same exact same sensation. My body remembers the route of a path that should never have been there to begin with.

I lived 29 years without an ostomy. In the two years that I had it, I believed it was the best solution for me, and for most of that time, I believed that I would always have it. The only way to survive was a radical acceptance of this defect. I told myself that this was the best option for my body and I made myself believe it. I believed it so much that even my body was convinced.

I still have a wound where my stoma was. It is closing slowly. Mostly the pain is manageable; I know it will never really go away. Several times a day, I feel my body mimic the pressure of an obstruction behind the stoma, the twisting and lines of pain spiderwebbing into my lower back. The pain isn’t real, but my brain won’t believe it.

Phantom pain is notoriously resistant to pain medication. One of the better options is the use of psychological “tricks” to convince your body that it is still intact. I am thinking about how to do this. But I don’t know which version of my GI tract my brain thinks is real.

 

The high water mark

I spent most of the latter half of May in bed. People woke me up take medication on schedule and I fed myself small meals periodically. I watched movies and TV and drifted in and out of sleep, pain killers and Benadryl making the world soft around the edges.

Every day, even as I felt myself healing, my strength and stamina waned. My legs felt weak when I stood up. I got winded walking around the block. Holding my head up felt difficult. All of the stamina I had built up before surgery was gone. All of my progress was undone.

I spend so much energy trying to get somewhere I’m never going to get – to this place of physical health where I can exercise and sleep at night and wake in the morning without bleary eyes and a pounding headache. I have been trying to reach this milestone since well before I knew I was sick.

I’m not even sure I know the closest I ever came. What is the highwater mark of this particular struggle? Was it the few weeks before my last birthday when I was sleeping at night and waking without an alarm? Or that really good day last September? The few weeks after my colostomy healed? I don’t know. I’m not sure there is a high water mark. Everything is relative.

Living with a sickness that causes regular setbacks – and requires treatments that sometimes do the same – is difficult. This halting start has become a sort of rhythm, the timing an inherent part of this experience. I’m never getting anywhere. I’m always getting it wrong. It feels like if I could do the right things in the right order that it would make a difference. `

But what if every time I started again, it didn’t mean that every time before was a failure? All those times before, all the moves in the wrong order, kept me alive and participating in the world. How wrong could they be? What if the high water mark of this struggle is just being alive?

Reversing the ostomy was the right move. I am noticeably less inflamed and my body is responding. I am having fewer reactions. I am eating without vomiting. The squishiness, the swelling weight is melting away so I can see the features beneath. I am still in pain, but I think I always will be.

I’m getting stronger. It’s slow, but it’s happening. I can walk for twenty minutes now, Astoria happily padding along beside me. I’m short of breath and sweaty when I’m done, but I can do it.

Maybe it’s time to stop blaming myself for all the times I had to start over. Maybe it’s time to see these setbacks as opportunities to understand my body and learn from it.

Maybe this is enough.

 

Winding in the light

I have a wound on my abdomen, a literal open wound where my stoma was. Every night I undress it, removing long thin strips of gauze before replacing them with clean packing, manipulating the tendrils with sterilized scissors. It is graphic, visceral. But I prefer to do it myself. I prefer this active stewardship of my body.

It is healing, closing up along the seams that have formed on my skin, one on each side. I am participating in the act of healing my body. Soon the line will be continuous, all the tissue underneath knitted together. Just a line that keeps a secret, like lips sewn shut. No one will ever look at this scar and know I had an ostomy until I tell them.

My GI tract is trying to figure out how to work with this new continuity. It hurts. It feels like everything holding my abdomen together on the left side is trying to give out. I am starting the very slow and arduous process of regaining strength and routine. It feels like a lot on some days. Today it feels like a lot.

But two years ago this was unfathomable. Even six months ago, I thought I knew pretty well the path my life would take it, and it was a short road, a straight line to pain and anaphylaxis and liquids and soft solids forever. I still see that road, but it is longer and it winds its way more into the light.

I don’t believe anymore that there is any fear that is so wide and so deep that you cannot meet it. I just don’t believe it.