I had this life once

Screaming at the sun

I woke this morning to several more inches of snow. I watched it fall as I hovered in the doorway, the dog chasing it around the yard. My city has seen over three feet of accumulation in under a week with more on the way. It makes life more difficult, but it wasn’t difficult yet first thing this morning. It covered everything, pushed away the peripheral realities of life. Not a problem yet, just me and this sparkling, crystalline oblivion.

I am grieving right now. The isolation that accompanies snow storms is a good fit these days. I drink entire pots of coffee and fresh juices and type furiously while listening to the Beatles. There is no one to ask about this pain. It is just as well, because I haven’t felt like talking about it.

I funnel this frenetic energy into work, into writing posts, into cutting up fruits and vegetables to juice. I don’t want to sleep because I feel like I should be doing something. I can’t sit still because I am so uncomfortable in this body and if I stop moving, it feels like this sorrow will be upon me.

I grieve all big decisions, whether or not I realize it at the time. This swell of emotion has been building for some time, all the small upsets snowballing around this weighty core. I realized last week that I can no longer feel the difference along the scale of emotional pain. There are no little things right now. Every pain hurts exactly the same.

I will have the surgery and recuperate. I will feel better when I am healed. I will be taken care of. I will be fine. I will do all the things I have to. Everything will get done. I will be fine. I will be fine.

I don’t get upset when I see a blizzard is coming. The sheer enormity makes it pointless. It’s like screaming at the sun. There’s no point.

It’s the same with this pain. I know there’s no point in trying to change it. But sometimes I scream at the sun anyway.

Burning down

A lot of my doctors remember that I was applying to medical school before I got sick. I think this is funny, but I suppose my story is strange enough to be memorable. When I saw my surgeon to discuss my upcoming surgeries, he asked if I was still planning to go.

“I would never survive medical school,” I said casually. I briefly described how I anaphylax when overtired, that stress is dangerous for me, that sometimes I sleep through entire days.

“I think you’d be fine. Never say never,” he replied.

Inside, I was shaking my head. I want to go to medical school. I think I would do well in medical school. But this disease is such a constant unknown. I can’t predict what it will do, and all I can do is try to live around it. I don’t know that I can justify going to med school when four very stressful weeks could disable me permanently. Even more than I’m already disabled, I mean.

Then there are the more practical concerns. Like how I almost never drive anymore. If I drive somewhere, there is always the chance that I will react and need IV meds that make me unable to drive. When that happens, I need someone to come get me and drive my car home. I also can’t take pain medication if I need to drive. And also, it irritates my hips. So I would need to find someone to drive me.

And that most basic adult life skill: waking up to an alarm. Can’t do that either. I have a deaf alarm clock that shakes the bed and two other alarm clocks. They don’t wake me. I have to be woken up by my parents every morning, which is really humiliating. Every time I fall asleep, I’m afraid I won’t wake up in time to do whatever I need to do the next day.

There are more things, of course. There are dozens of things I can’t do by myself anymore. I can’t lift things. I need help to make my bed. If I’m in pain, I can’t walk my dogs. I sometimes can’t take out my trash. When I had a PICC line, it took me forever to do dishes in a way that didn’t soak my dressing and if I covered my site, it made it harder for me to use that hand functionally. Cleaning is really time consuming because I’m allergic to dust. And so on.

I can’t remember when I started losing my independence. It feels like there should be a moment, a specific point in time I can point to. There isn’t. It must have started slow and progressed that way for a while, the change so gradual it didn’t draw attention. And then one day I realized that I was dependent upon other people to execute basic functions of my life. And there was nothing I could do about it. It was like my house was burning down and I didn’t realize even though I was living in it.

Now I am dealing with the reality of again being completely dependent on others for several weeks of my life while undergoing and recovering from my surgeries. This time, I am doing it with the added complication of living alone. After my last bowel surgery, I couldn’t be alone for almost three weeks. I couldn’t lift anything. I couldn’t stand long enough to cook anything. I was at increased risk of anaphylaxis. I am fortunate to have many friends and relatives who signed up to babysit and care for me during that time. I am grateful to the people who cared for me then, but the complete lack of privacy and personal space during that time was one of the hardest parts of my recovery.

It is not lost on me how closely my current situation mirrors the lead up to my ostomy surgery, and how badly things went afterward looms heavily in my mind. Both personally – needing to move out of my apartment very quickly, my longterm relationship ending – but also physically. I wasn’t supposed to have obstructions after the ostomy. I did. The ostomy helped, but the reality that I still had so many problems was difficult. I know I need these surgeries, but I am preparing for the disappointment when new complications arise. And I would venture that the disappointment is harder than the physical recovery.

The last few weeks have been really stressful on pretty much all fronts. I’m taking this weekend to figure out a way to address that, as what I’m doing now is not sustainable.

I can’t be everything I want to be all the time. Sometimes I can’t even be a functioning adult for myself.

The truths I ignore

I had an appointment with my surgeon today. I need to have my rectum and some colon removed. It no longer has function and I essentially have a mast cell twist on diversion colitis. This has been coming for a while.

We talked about what the surgery entailed, healing time, mast cell precautions and how to suppress anaphylaxis in the days after the operation. Never once did he remind me that removing this tissue means that I will never be able to reverse my ostomy. He knew I knew. I was glad he didn’t say it.

“I would never reverse my ostomy,” I told his Chief Resident during the appointment. And that’s true. I never would. I would never want to again be in the position I was before I got it, where my life was one long GI nightmare of amotility.

I am not often surprised by my doctors, but today was one of those rare occasions. Everything that needs to be done can’t be done at once without the likelihood of complications. This means I will get the majority done during one surgery, after which I will be in the hospital for about a week, and will recover at home for 4-6 weeks. Then I will likely need a second surgery.

We set a rough date, agreed to meet again three weeks before surgery to go over everything again, and I left. I hurried down the hall past the brown wooden doors and turned quickly into a single stall bathroom. I locked the door and put my hands over my face just as the tears started, hot against my reddening cheeks.

I would never reverse my ostomy because I would not be able to function without it. I mean it every time I say it. But knowing logically that there is no reason to keep the rectum and excluded colon doesn’t make me feel less robbed. It was easy to pretend that I wouldn’t always need it, even if I only pretended with myself.  I just slammed the door on my last tiny chance at normalcy.

The reality of having an ostomy for the rest of my life is something I have avoided dealing with emotionally for quite some time.  I talk about it a lot, without embarrassment, but it sort of feels like I’m just trying to make myself feel better about this decision two years later.

There are some truths I have to ignore to survive. I have to mislead myself to be able to love the world again every morning.

 

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.

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.

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.