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my feelings

Inconstant

The week before Christmas was crummy. I was cold and sore and my mind was fuzzy. My skin burned and my neck was hivey. I lay awake all night, my brain humming faintly. As sunlight crept into my bedroom, I burrowed deep under my covers and slept through the daylight. I woke to darkness, feeling slow and sloppy, dripping with sweat.

Two days before Christmas Eve, I drove my car to get my hair done. I didn’t feel well. I knew I would have a reaction that day, but I was hoping I could delay its onset until I finished my errands and made it home. I couldn’t. In the middle of my appointment, I called around until I found someone who could pick me up and drive my car home. I diluted and pushed IV Benadryl in the middle of a salon while rich housewives cast sideways glances.

The ride home was the setting for my personal favorite type of mast cell reaction, in which I’m uncomfortable in my own body, so exhausted that I am falling asleep, and unable to find the right words to express what I want to communicate. I collapsed into my bed and slept for hours, the heavy and dreamless sleep your body produces when it is too exhausted for imagination.

It has been less than two weeks since I wrote a post about how much better I was feeling. I couldn’t even get out of bed.

This disease has stripped away all the meaningless noise surrounding me. All my whimsical desires are gone. I don’t have any dreams left, except the very big ones. But how can I do something extraordinary when I can’t even stay awake?

In my mind, there are no limits. I can wake up every day. I can eat normal food. I can walk with stars. The limits are in my body. I strain against them, stiff and cold, like iron bars.

The Saturday after Christmas I developed sudden, mysterious and massively painful back pain. I spent most of the next week in bed. These crashes feel harder than they used to. Every time I land on my knees, the scrapes sting longer, scar deeper.

It has been two weeks since Christmas. This week I went into the office four days, a feat I haven’t achieved in almost a year. I have had a big week. I cooked meals and did work and organized medical stuff. I watched documentaries and did laundry. I started the enormous task of organizing my life for the weeks after surgery during which I will be largely unable to participate. I have slept every night this week and woken around 7am. I am tired and sore but it’s manageable.

I can’t know how I will feel in two weeks. This constant inconstancy is so hard.

2014: The sum total

One cold and bleak winter.

One insurance change.

One breakup.

Two central lines.

Three new scars.

A bunch of appointments at the ambulatory infusion center.

51 infusion nursing visits.

48 dressing changes.

32 lbs of steroid weight gained.

One best friend who had a medical emergency and recovered amazingly.

One new niece.

One unexpected hospital admission.

One ambulance ride.

Eleven self administered epipens.

Twenty one days for which I could stand up for less than thirty minutes a day.

One bachelorette party in Maine.

One lounge night of 40’s music.

One trip to Seattle where I learned that I still had magic inside me.

Two and a half days in Portland.

Two weddings.

One new cousin.

One bridesmaid dress that just fit with the steroid weight.

2400 hours (100 days) spent infusing.

Three invasive procedures.

One trip to Water Country on a very hot day.

One new dog.

280L of D5/Lactated Ringer’s.

710 saline flushes.

230 sharps put into the container.

One roadtrip in a convertible.

Two days of apple picking.

100 squash eaten.

2000 lbs of potatoes mashed with butter.

One trip to Disney-on-ice with my nephew.

One trip to Salem around Halloween.

One less well loved hippie in the world.

One friend started midostaurin.

One pumpkin carved.

Dozens of times I felt like I was connected to the heartbeat of the world.

Two new pair of glasses.

Dozens of new squash recipes.

Zero coffee-mate due to its not being low histamine.

114 medical appointments.

97 days on the hospital campus.

7,665 pills taken.

Two new diagnoses.

Twelve bottles of liquid Benadryl.

7500mg of prednisone.

3160 ampules of cromolyn.

110 doses of IV Benadryl.

300 ostomy changes.

600mg of ketotifen.

One drug that helped a lot that I really thought wouldn’t.

Eight weeks of liquids and soft solids.

One white count normalizing.

One iron count in normal range.

Five weeks of feeling better.

One surgery planned for 2015.

10 lbs lost.

Four flights.

Five days in Colorado.

Several nights of crying to my friends.

More laughing with them.

60 times my father drove me to work.

Two times I needed to use IV meds after I drove myself somewhere and had to get a family to pick me up and drive me home.

Millions of times my friends and family helped me out.

272 nights I slept.

365 days I woke up.

Two obstructions after starting IV therapy.

365 days of immunodeficiency.

73 yoga practices.

75 researchers educated on mast cell disease.

42 health care providers educated on mast cell disease.

102 people I taught to use an epipen.

One person I talked through their first epi.

Hundreds of people met with mast cell disease.

Many new friends that make living with this a little easier.

One new website.

252 blog posts.

52 countries with MastAttack readers.

10,000 questions answered.

One big plan for 2015.

One year of living and not just existing with mast cell disease.

These little indignities

My back started hurting in the middle of the night on Saturday. I didn’t lift anything heavy or exercise or slip. I was just lying in bed. I walked around and tried to stretch but I could barely walk. I took round the clock pain meds for the next two days and overthought why it hurt. I thought about the likelihood of pyelonephritis, splenic distress, compression fractures. It was not my best work. (If you’re looking to not sleep when you have sudden onset back pain that started at night, google “night time back pain.” You’ll be all set.)

Pain is a huge trigger for me. My doctors recognize this and agree that managing my pain is very important to avoiding anaphylaxis. Honestly, it is probably the lynchpin to this whole shebang. When I can maintain a workable baseline, I get stable pretty quickly. So when laying on a heating pad is giving me 6/10 pain and walking is more like a stabby 8/10, it bodes poorly for my no epi streak.

I called my PCP’s office first thing on Monday morning. It was easy, since I had been up all night in pain. I told her who I was, that I had a rare blood disorder and that being in pain could cause me to go into shock. The receptionist was dismissive.

“You can see another doctor,” she started before I cut her off.

“I’m not going to spend an hour explaining my disease to someone who doesn’t know me,” I said, wincing. I am all for educating, but not when I am in huge pain and borderline mast cell attacking.

“Well, then it looks like you’ll be waiting until 3:30, because that’s the only time he has room. It’s the same rules for everybody,” she said, her voice half an octave higher than it was when she answered the phone.

“Tell him it is me and that I am in a lot of pain. Just tell him. Don’t schedule anything. Just tell him I am in a lot of pain.”

“Okay, I’ll tell him when he comes in at 8:30,” she answered.

At 8:32, I got a phone call. “He says to come in right away, can you be here at 9:45?” she asked, a little breathless. “Yup,” I said, warm with victory.

It was a small win, but it mattered a lot. “It only took you ten years to find a good doctor,” my mother commented as she drove me a few towns over to his office. It’s true. I have lost count of the doctors who called me crazy, accused me of Munchausen’s, thought I was drug seeking. Also numbering into the dozens are providers who refused to acknowledge or effectively treat my rare disease. The amount of health care losses I have accumulated over my lifetime is staggering.

I take Zofran three times a day, every day, in order to not constantly throw up. I have a prior authorization for the quantity. This summer, my doctor wrote a prescription for 270 tablets per 90 days. The mail order pharmacy filled it correctly and shipped it out. In October, I submitted a refill request. When the order arrived, the prescription had been altered to 27 tablets with 40 refills because “that many ondansetron is obviously an error,” the pharmacy supervisor told me. After three phone calls, they eventually agreed it wasn’t an error. I had to call three more times to get them to agree to change the prescription back and send me the 243 tablets I was owed. Over 15 hours of my life to correct a mistake.

Last week, I went to pick up a prescription at my local pharmacy. I worked for this pharmacy chain in the pharmacy for almost ten years. They told me I didn’t have a prescription to pick up. I gave them information on when it was called in, when I was notified it had been received, and suggested that it had been returned to stock. Two of the staff behind the counter reiterated that there was no prescription, that I was wrong, that it had never even been refill requested so I was just confused. When I explained again that I couldn’t go without this medication, the pharmacist snapped, “You don’t need to tell me that!” before turning away. Awesome.

“You think it was returned to stock?” the third staff member asked. “Yea, I’m pretty sure,” I said, pretty irritated after ten minutes of arguing. “I’ll take a look,” he offered. I sat down and waited.

Thirty minutes later, one of the other staff members called my name. The prescription was ready. “You found it and you didn’t even tell me?” I asked, incredulous. I had now wasted an hour in the store. She rung me out without looking at me, obviously offended by the audacity in asking them to find a prescription for a medication I cannot go without. She shoved the prescription across the counter and walked away. Two months ago, this same pharmacy dispensed me a prescription for 1mg prednisone with both 1mg and 5mg prednisone in the same bottle. I got a phone call with a bored apology.

These little offenses constitute a huge portion of my yearly interactions with the healthcare industry. For every one person who is interested in actually rendering me decent care, there are many more who think my case is too complicated to be worth the time. For every pleasant interaction, there are five incidents in which I am treated rudely. For every ten mistakes that are made, one may actually hurt me. I lose hours and hours to begging people to correct mistakes they made so that I can get my medication or medical supplies or appropriate treatment. The effect this stress has on my health is significant.

Patients are disadvantaged in their relationships with health care providers. The system is not set up to work for us. It can be a struggle to get medication and appointments and records and care. We stand to lose much and they stand to lose nothing. If they treat us poorly, there is very little chance of real consequences. If they make incorrect notes (THIS HAPPENS ALL THE TIME), they are unlikely to fix them even when you point out the errors. If they label you as crazy, all of your providers will see that note for years to come. It is frustrating and insulting and sometimes humiliating. We just have to take it.

But the alternative is to not get care, and that’s not an option for people like me. I have no choice but to regularly submit to these situations which literally sicken me because they have something I need. It’s scary going to doctors you don’t know, and going to unfamiliar emergency departments, and switching insurance, but the only way out is through.

I saw my doctor on Monday morning. We ruled out all the scary stuff and he wrote me some muscle relaxers. We discussed a pain med schedule and he sent me on my way. “Call me if you any problems,” he said on the way out. It was a good reminder that sometimes it’s worth the trouble. We may have to fight for treatment in the system, but outside of it, there’s no hope at all.

We can do this.  Stand up and fight.

 

Winter, the dark.

I am not a summer girl. I never have been. Years before the heat made me sick, I would look forward to fall and the smell of fallen leaves and the way they crunched underfoot.

Summer was never for me. It was just too bright.

September and October are my favorite time of the year. I am a Boston girl and I love everything about New England autumn. I love the way the light looks icier, bluer coming through the trees. I love the feel of chilly air on my cheeks as I walk through the city. I love opening the window at night and falling asleep to the scent of frost. I love Halloween. I love watching scary movies every night while I write in my journal. I love the way bare tree branches silhouette against the swollen harvest moon.

I love all these things; but I still feel the coming dark.

I get very introspective in the fall. For the rest of the year, I look forward, move forward, but in the fall, it seems I can only think back. Festive October gives way to cold November nights, to bleak Decembers, where the horizon swallows the sun before 4:30 and everything tastes like regret. I write a lot about life, about my past. I wonder about the moments that my life hinged upon, about who I would be if I had turned differently.

I like my life. It’s just that the darkness makes the past seem so large. It unlocks in me this door to melancholy and it unfurls around me, splendid and devastating.

Depression is an organic process of mast cell disease. It is part of the disease, not a side effect of living with a chronic illness. I know that these racing thoughts and weariness with the world are from masto. I know that I’m not really hopeless on the bad days, but it doesn’t matter. By the time December is half over, I don’t even think I can tell the difference.

Tomorrow is the shortest day of the year. Then the light will return.

There is beauty in the darkness. It’s just so cold here.

Self evident

For hundreds of years, prominent practitioners of medicine believed that miasma was responsible for disease. This so called “bad air” was thought to arise from rotting flesh and to contaminate its surroundings. This idea was widely believed and identified convergently in various traditions, from the ayurvedics in India to the plague doctors in Europe. As epidemics decimated the population, artists drew black robed spectors with scaly feet and sickles – miasma, the very incarnation of Death.

In 1546, Girolamo Fracastoro described a theory in which epidemics are caused by seeds that transmit disease through either direct contact or indirectly. In the coming centuries, various scientists proved links between disease and organisms –Louis Pasteur, who connected puerperal fever and Vibrio; Ignaz Semmelweis, who realized that women died disproportionately in delivery when attended by physicians responding directly from autopsies; and Robert Koch, who at long last solidified germ theory as the basis for infectious disease. He proved that organisms cause disease. Like all good science in years down the road, this fact seems self evident.

In 1972, Stanley Prusiner met a patient with Creutzfeldt Jakob Disease (CJD.) A devastating neurologic disease, it literally causes the brain to develop large porosities and to look like a sponge on autopsy. CJD is just one of several known spongiform encephalopathies, which include Kuru, a disease transmitted by cannibalism in Papua New Guinea; scrapie, which affects sheep; and the most famous, Bovine Spongiform Encephalopathy, better known as Mad Cow Disease. These diseases are universally fatal. All of them were thought to be due to a “slow virus” that had never been isolated.

Ten years after his fateful encounter with a CJD patient, Prusiner published a paper in Science that identified the cause of these diseases: not an organism, not a bacterium or a virus, but a protein. His experiments described how this protein, found in abundance in the brain, when misshapen, could somehow induce the rest of their proteins to refold themselves the wrong way. His data described not an infection by a living thing, but a completely novel disease causing process. It involved no DNA or RNA, it involved no replication or gene expression. It just involved one molecule with the wrong shape causing everything around it to fall apart.

The ensuing fallout from Prusiner’s publication was nasty. Science, real science, is cutthroat. It is competition for funding. It is spreading rumors. It is discrediting. In 1986, an article in Discover accused Prusiner of seeking fame over science – the very worst slur in research. They said he didn’t care about the damage he was doing to the dogma of biology, that he didn’t even care whether or not he was right.

That’s the thing though – sometimes it doesn’t matter if you want to be right, if you are. In 1997, Stanley Prusiner was awarded the Nobel Prize for his identification of prions (infectious proteins) as the causative agents of these transmissible spongiform encephalopathies. And while prions still have detractors, for microbiologists of my generation, we find prion theory to be self evident.

A hard fact about mast cell disease is that the science behind it is being unspooled right now. That is the trouble with learning things in real time – the pull of history is still so strong for many doctors and scientists. They are loath to unlearn the things they know, to look at the data, to change their perspectives.

In the last few days, I have spoken with several people with masto kids who have either had their children removed from their care or who are at great risk of this occurring. And there is another family that I suspect is right now living this nightmare of losing their child because their rare disease is poorly understood and under recognized.

Medical professionals turning aside solid science in favor of accusations and ego is not just a failing in the system. It is life ruining, traumatizing, unthinkable. It is a tragedy.

I am not a religious person. But I kneel faithfully at the altar of science. When the monsters howl at the door, science protects us, comforts us, promises us that these horrors cannot go on without end. People say that there isn’t a time limit on important discoveries, but of course there is. If it doesn’t arrive in time to help, it is utterly devoid of meaning.

It is not enough that our bodies try to kill us, that the treatments cannot give us our lives back, that current diagnostic methods are inaccurate. We are told over and over again that we are not as sick as we say, or that we are not sick at all, or that parents project these diseases onto their children, that our suffering is the result of anxiety and overactive imaginations. They take our dignity, our livelihoods, our children.

Saying we are crazy, that we are liars and deceivers, does not make us not sick. It just makes us sick with little chance of effective treatment.

I don’t know how much longer we can live like this, how many more weeks like this I can stand. I don’t know how much longer I can wait for doctors to realize that mast cell activation disorders are real. I don’t know how much longer I can wait for them to agree that these diseases, that our suffering, is self evident.

 

Future realities

I love data. I love scores, charts, trends. I collect information, categorize things, make lists. I love data because it’s not malleable, not mutable based upon your current reality. Data does not lie.

I keep track of my life in a little red binder. I record various data in color coded ink. When I woke up and what symptoms I had when I did. What time I took my medication. What I ate. What I thought about. How much pain medication I needed, if I had IV meds, my IV fluid volume. I draw my yoga routines in soft violet curves, map the routes I took to walk the dogs. And at the very bottom of each page, a hand drawn table, double lines under the header, my most important tool in tracking my health.

There are three columns: symptoms, score, notes. I might skimp on other details (on terrible days, I sometimes just write NOOOOOOOOOOOOOOOOO across the page), but I fill out this table every night. I have been doing it for almost three years. Every night in bed, I score my symptoms: nausea, vomiting, GI motility, flushing, hives, headache, GI pain, bone pain, other pain, energy level, sleep. I record how bad they were out of 10. Indelible. Immutable.

Last month, my doctor called me to discuss options for dealing with my ongoing GI issues. They all sounded really stupid. I told him they were sounded stupid. But I’m out of options that don’t sound stupid so I tried the one that seemed least likely to harm me while probably doing nothing. It has helped a shocking amount. I sleep at night. I’m not exhausted all day. I don’t have to brush vomit acid out of my mouth several times a day. I can do yoga regularly. I can cook. It makes my bone pain worse for some reason, but frankly, I don’t care. The global improvement in my symptom profile is that dramatic.

I started a liquid/ soft solid diet in October. I mostly eat pureed vegetables and protein drinks. I drink a lot of bone broth. It is boring and annoying and sometimes upsetting, but it is definitely working. I have been adjusting medication for months, trying to find the balance between coverage and not sleeping for 20 hours at a time. With the gut rest afforded by my easily digestible diet and the addition of this new medication, I seem to have found a working combination.

I saw my doctor on Tuesday. For once, we shared good news. My biopsies were mostly clean. My bloodwork is better. I will need surgery to have the (has no function, hurts and bleeds all the time) end of my GI tract removed, but this is not surprising. I am doing better. A lot better.

The thing about reality is that whatever one you are living right now feels like it has been your reality forever. When you have a bad month, you can’t remember the last time you felt good. When you feel hopeless, you can’t remember life without smothering darkness. Your current experience colors all your other experiences. It makes your present situation seem bigger and heavier and more permanent.

A year ago, I was living the darkest, coldest part of my life. Every day was a struggle. Every minute was a struggle. This was a year of telling myself every minute, “You can do this. You can do this.” Even when I was sure I couldn’t. Even when I felt hollow, my very life force long since sapped away.

But now I can line up the pages of my binder and flip through them. Like an old cartoon, a story appears: the numbers in my tables go down, and I get better. Data doesn’t lie.

I don’t know if this will last. I don’t know how hard it will be to recover from surgery. But it doesn’t matter. Right now I am packing to go to Colorado this week and going to Disney for New Year’s Eve and studying for exams and making big plans that I hope to share soon.

A year ago, I could never have believed that I would feel like this now. I am healing my body. I am recovering my life.

There is no limit to the things we can do. Reality is temporary. There is always a future. There is always the possibility of new realities.

The other side of the sky

I am the type of person who experiences memory through music. I cannot always remember the vividness of color or feeling when revisiting in my mind, but one verse immerses me in the rich details of sense memories. Three right chords and I am reliving it.

A few days ago, as I was stepping into the shower, Wagon Wheel by Old Crow Medicine Show came on. Immediately, I was in Portland, Oregon last July. I was going for a walk well past midnight, my Epipens in my dress pocket, clanging against my thigh with each step. The air was still warm, humid, but not cloying; just sort of close in the way summer sometimes is. I signed along to the song in ASL as I walked, an old habit from when I was learning.

Driving across the bridge into Portland was the culmination of surviving years of surgeries and shocks and lost pieces of myself. I felt amazing there, filled with this lightness, but also sad around the edges. This disease is so unpredictable. I loved it there so much and I don’t know if I’ll ever get there again.

Last week, I scheduled an appointment with my colorectal surgeon for January to discuss the removal of the end of my GI tract. It no longer has any function and causes me a fair amount of grief. That same day, I booked my flights to Colorado. I was not feeling great emotionally because frankly I’m tired of surgeries and procedures but physically I have been feeling much better. I am sleeping at night and not vomiting every day and don’t feel like a zombie all the time. Anything better than normal feels like such an improvement.

In the next three months, I am planning to visit Florida, Minnesota, California and potentially Hong Kong. It’s a lot of travel for anyone, let alone someone like me. That’s the thing about feeling better – it gives you this artificial bravery to do things you normally wouldn’t. It makes you feel like you can do things you know you can’t. What if I could, though? What if I could do all things I think I can?

I had one of those cries in the shower that night, when Wagon Wheel came on, the kind with wrenching, full body sobs. It had been building all week. Every morning that week I woke up feeling okay and all day I waited for it to get worse. I was afraid of how bad it would feel when this good went away. I was afraid I would remember that I can’t do all these things I want to do, and I was afraid that I would be right.

When I have a really good day, I tell people that I feel like I could fly, like I could touch the sky if I wanted to. Feeling good after not for so long does strange things to your mind. It makes it feel like you can bend the limits of your reality.

Standing in the water, I had an image in my mind of me touching the sky only to have it break apart under my hand. And on the other side of the sky, there was this other place, with no limits, and it terrified me.

When I feel good, part of me is afraid of feeling bad again. But I think there is also a part that is afraid for another reason. I think part of me has no idea how to function outside of these confines my disease has built for me. I think if I was healthy tomorrow, I wouldn’t even remember how to live anymore.

 

The other kind of hope

I am an optimistic person. My optimism borders on religious; when I despair, it is all that I have. I am good at finding silver linings, at genuinely feeling fortunate or lucky or grateful for the little upturns of bad situations. I enjoy talking to my father when he has to drive me to work. I like snuggling with Astoria when I have to spend the day in bed. I am grateful for my awesome friends, family and coworkers who help me out. All of these things happen because I am sick, manifestations of the impact my illness has on my life. They give me hope that I can keep doing this.

But there is this other kind of hope, more insidious and malignant. I woke up this morning on my own after sleeping for nine hours. This is the second night in a row I have done this. I felt okay when I woke up. Some bone pain, but overall, better than normal. And then it happened, that dangerous optimism – maybe I’m getting better. Maybe this is when I start to get better.

It never is. I know logically that two days of good sleep doesn’t mean I’m headed for a remission. I wish I didn’t feel these things so intensely. But I do.

Even after all this time, I still can’t believe that I will never get better. I can know it in my mind, but my heart just won’t accept that this is anything but temporary. This hope for impermanence can be so painful.

Sometimes I wish I weren’t so hopeful. It is just so hard to live with the perpetual disappointment.

Expectations

For years I had a print of “The Lady of Shalott” above my bed. It is one of my favorite paintings. The story it tells is based on Lady Elaine, the Lily Maid of Astolat. She fell in love with Lancelot, who didn’t know of her feelings. When she realized he would never love her in return, she mourned for eleven days before dying of a broken heart.

After her death, her father placed her body in a boat and surrounded her with lilies. He sent the boat down the river, where the waterway would pass by Lancelot’s home. When the boat ran aground at the bend, people came out of the castle to see it. Only then did he realize what had happened.

Her story is about heartbreak and regret. But just as much, it is about expectations. Elaine fantasized about Lancelot so much and loved him so intensely that she expected that he had to know. He didn’t.  His ignorance destroyed her and he never even knew it.

I find the harder aspects of my illness come from expectations. I expect to wake up in a functioning body. I expect to not be in pain all day. I expect my brain to work at the speed it used to. I expect people to accommodate me. I expect to be treated fairly. I expect to be independent. I expect to live the life I want. I expect that someday, I won’t always be in pain and I won’t need dozens of medications and I won’t be afraid to eat something outside of my home.  I expect these things.  I want them so badly it seems like it could manifest through the sheer force of my will.

I would be disappointed a lot less if I didn’t have these expectations. But not having them feels like surrender.

I have always loved Elaine’s story. I never thought I would also deeply mourn the loss of something I never even had.

Ablation

The summer of 2013 will probably always be remembered as one of the hardest of my life. It’s painful even to think about; bleak, with a few moments of light.

I could tell you a story about those months and all that pain, but the truth is that I don’t remember a lot of it clearly. When I think of that time, my mind conjures a memory of swimming at my best friend’s house. I climbed into the empty pool and swam to the side. I tucked my legs up against my chest, my feet planted firmly against the wall. I lay back, my hands atop one another, an arrow behind me. I pushed off, my head in the water, and slid cleanly through the water.

Above me, the sky was fairytale blue, the sun behind the dense green foliage of the tree overhead. The few clouds were gauzy, like set dressings. It really was such a beautiful day. There was a whole world before my eyes, but beneath the water, it was drowned out by the pounding of my heart. I closed my eyes and folded in on myself until the water enveloped me.

I find that the sicker I get, the less I want things. I am constantly throwing things away, donating things, evaluating what I really need. Last weekend, I opened a cardboard box with the ominous warning “Don’t open for six months” scrawled across the top. Inside, I found a book, notes, pictures of a dream I lost that summer. I flipped through them, looking through the corners of my eyes, before adding them to the garbage pile.

I’m not getting rid of things I don’t need. I’m getting rid of things that hurt too much to live with.

I live in a two room apartment. It’s small and utilitarian, but well decorated and softly lit. It has hidden places and a talent for finding depth where there should be none. Its limited space is a blessing; I cannot justify keeping these remnants of a personal history I have to turn away from. I clear my shelves of books on places I’ll never be healthy enough to go, donate my rock climbing gear and hiking boots, throw away clothes that will never fit over my swollen belly. After I take them out of my apartment and never have to see them again, I sleep well, swaddled in numbness.

This feels less spiritual and more primal. This is less self actualization and more self preservation. I am occupying a space and time where there is no room for thoughtful processing of my emotions. In this place, I am just cutting out everything that hurts.

I feel like I am surrounded by ephemera of all the things I’ll never get to be. Sometimes it’s all I can do not to tip my head back under the water and let myself be swallowed whole.