The end of February was one of those spectacularly awful periods where it seems like the entire world is conspiring against me. I woke up with sudden, severe back pain so bad that I literally got stranded in the middle of my bed for twenty minutes until the spasms stopped. My dog got into some not safe for dog food and got sick. It was bitterly cold. I felt like I was generally fucking up the lives of those around me just by existing. Not my best work.
In the middle of this, I told everyone about my decision on surgery. A few days later, I realized I could not say colectomy out loud with feeling this profound emptiness. I got the letter confirming my surgery date and pre-op/post-op appointments. I couldn’t even open it. I threw it into my filing cabinet and slid the drawer closed.
I am very strong willed. It’s not always a good thing. I can talk myself into doing anything if I feel strongly enough that it’s the right thing. I can talk myself into ignoring my fear, but sometimes fear serves a purpose. It protects us. It shows us where the line is, and what side we’re supposed to be on.
So I decided to take a little time and explore my fear and figure out its purpose. I didn’t talk about my health in depth or do any research or write about being sick. I focused on all the other parts of my life. I cleaned my apartment and cooked and worked and took care of Astoria. And I thought. I thought a lot about my life and my disease and this surgery and my fear.
When you are chronically ill, you are in a constant struggle to not have less. Less time. Less money. Less health. Less hope. You work so hard to make your life workable and any setback chisels away this richness of your life, takes pieces that you may never get back. That is what I am afraid of. I am afraid of less. I’m afraid that this will all backfire. I’m afraid that I should live with this pain and poor function. Because I know the space I have with this life, and if I make the wrong choice, I could end up with less. And sometimes this life feels so small, and how could I live with any less?
I am brewing an obstruction right now. I felt it on the train ride home, the pain spiderwebbing out from about an inch behind my stoma. Tonight, I ran a very hot bath to try and move things along in my bowel. I deaccessed my port and took off the ostomy bag and appliance and stepped into the water. I felt myself turning red as I lowered myself down. I leaned back, resting my hands on my hard, distended abdomen.
I looked at my body, really looked at it for the first time in a long time. I saw the way my skin flushed and mottled. I saw the hives around my stoma where I react to the adhesive from the ostomy appliance. I saw my body struggling to digest. Is this more? Is this the best it will ever be?
I think it’s a blessing that you’re not forced to ever know the exact magnitude of the wrongness of any one decision. I’ll never really know if I made the right choice. I could choose to change nothing and in six months, something completely unforeseen could happen. There’s no way of knowing. I’m grateful for that.
My decision is already made. This sense of loss is normal. This fear of less is normal. And at the end of the day, I am not built for caution. I’m just not. I can’t live with less because I’m scared when there is a chance for more.
I walked around for several minutes after I got out of the tub, just me and no devices. No dangling port access. No occlusive dressing. No ostomy bag.
I became interested in science very young. In particular, I found the body fascinating. I thought the ways in which bodies can differ but still function the same was so interesting. I read medical dictionaries and physiology books in droves. I watched science fiction shows and movies like it was my job. I had a little microscope that came with a methylene blue staining kit for making slides. I liked knowing the answers to things, and I liked that science got them for you. My destiny was sealed. I wanted to science.
I am fortunate to have grown up in an environment where science opportunities are accessible to women. I am fortunate that much of the media I consumed depicted women in science roles as smart and capable. I think my life could have been very different were that not the case.
To my generation of women scientists, Star Trek is an iconic touchstone. For many of us, it was the first time we saw women depicted in science roles. This was certainly the case for me. Dr. Beverly Crusher was my hero. I never wanted to be on the away team. I wanted to put everyone together when they came back.
My sister graduated from Boston University a few years ago. Leonard Nimoy was one of the speakers at her graduation. He put his hand up in the Vulcan salute and said, “Live long and prosper.” The entire audience stood up and did it back. It was one of the most iconic moments of my life. A stadium filled with thousands of people from all walks of life understood the cultural significance of this moment. For people like me, Leonard Nimoy represented an ideal – a society that successfully harnesses the power of logic and science.
I feel like right now I am often forced to defend science. People cherry pick data or believe headlines or issue propaganda without any real understanding of the scientific process and how it works. It is heartbreaking for me. It frightens me to think that a mass disregard for regimented science could be coming. It frightens me to think that everything that has been accomplished will be undone.
Leonard Nimoy died yesterday and it feels like a real, actual loss. Not only to me, but to science.
It is so easy to lose yourself when you are sick. In the beginning, you are two beings, you and your illness. Together but separate. Independent. Slowly, you bleed together. And then one day you are contained in this diseased vessel and everything is harder and you can’t get out. Every choice you make, every tiny decision, matters. Everything has consequences.
I have been mulling my GI surgery for several weeks. This is such a nuanced situation. Each solution has its own consequences. None of the options are benign. I always made my health decisions right away. Whatever my gut feeling is, that is my decision. Then I spend a few weeks justifying it to myself and making myself feel better about it. It’s sort of a weird quirk of mine.
That didn’t happen this time. I think about it all day, every day. It makes everything else seem more difficult, this looming decision and impending consequences of my choice.
I am terrified that I will choose wrong and the consequences will harm me. I’m also terrified that what I didn’t choose could have helped a lot. It is hard to know, especially for someone like me, with multiple unusual conditions, and big dreams. I count my big dreams as one of my conditions, something that must be accounted for. I have to be able to live with my choice.
After much research and discussion with my relevant specialists, I have decided on a surgical option. I am having some tests repeated in a couple of weeks, but they are merely to confirm what I already know. Almost exactly two years after I had my colostomy placed, I will be having the entirety of my colon removed save for a little bit of salvageable rectum. My small intestine will be connected directly to the rectal tissue and my ostomy will be reversed. If this fails, I will have a permanent ileostomy and accompanying nutrition problems for life, made worse by the fact that I can’t eat many of the foods used to mitigate this issue.
In the fullness of time, all your choices either fade into the ether or are absorbed into your being. If I choose wrong, it will become a part of me or become insignificant. Nothing is absolute. These choices become part of the constellation of our lives and you can follow the stars all the way through the story.
I wish everything wasn’t so hard right now. I feel like I am in the middle of a raging storm, the kind you get in New England summers, when the humidity is too much and the sky unleashes it. I’m standing in the downpour, lightning whipping and thunder crashing around me. It is awesome and terrifying. It feels like change.
I don’t remember the first time I was amazed at what my body could do, but a few episodes come immediately to mind. In 2007, my friend and I got lost while hiking in Norway near Bergen. We lost the moderate grade trail and instead found ourselves very carefully descending rock faces and hiking for several hours longer than expected. We had adequate food and water, decent weather and the benefit of a very late sunset, but almost twelve hours of physical exertion made for a long day.
When we got back to the hostel, it took almost an hour in a hot shower to get all the dirt off. We were exhausted. I crawled into bed and slept deeply, a narcotic, dreamless rest. Just before I fell asleep, I thought to myself that I couldn’t believe that I hadn’t injured myself.
In 2009, I fell through the floor of my attic, which was the ceiling of my front porch. I grabbed a beam as I fell and pulled myself up without hesitation. As I sat on the beam, remembering the image of my legs in the hole with my porch below, I was pretty impressed that I had managed to catch myself. I hit a different beam as I fell and had lots of bumps and bruises, including a huge one right at the top of my leg. In the bathroom mirror, it looked like a black smile. I was otherwise fine.
There are other moments. The first time I did crow pose. The day I ran a 5K. The several 3-day walks in which I walked sixty miles in three days. Actual feats of physical prowess.
I can no longer do things like that. Maybe I will again someday, but right now, it would be impossible. Still, there are moments when my body amazes me.
I walked down to the harbor yesterday. After weeks of suffocating greyness, 35°F felt like spring. The world outside was thawing, liquid, burning bright with reflected light. I didn’t care how much pain I would be in tomorrow. I just wanted to be alive in a world that was finally thawing, even for a short time.
Boston Harbor was frozen. There were no waves. The water was motionless. Large white globes of ice hung suspended, a crystalline sheen atop the surface. It was otherworldly, and really very beautiful. By the time I got home, I was in a massive amount of pain from the muscular strain of staying stable on ice and snow. I spent last night in bed on muscle relaxers with my heated blanket gathered against the small of my back.
Today the pain is worse and the world is once again encased in ice. But I am renewed in the knowledge that sometimes, my body is still capable of impossible things. I may never climb a mountain again, but in the brief reprieve from a legendary winter, my body walked to the ocean and saw the world doing impossible things, too.
Hello, dear readers. I am reporting to you from the frozen wasteland of Boston. You may have heard that we got some snow. And we have. We have gotten all the snow. All of it. At once.
People seem to be very curious about this, so I’m going to give my version of events. Because before I was a scientist and before I was a mast cell patient, I was a Bostonian. And whether or not I’m happy about it, I am witnessing Boston history being made right now.
I have lived in the Boston area all my life. So have my parents. For people who aren’t familiar with Boston, we get very hot, very humid summers; pleasant, rainy springs; amazing, colorful, brisk autumns; and Winter.
Boston winters are snowy. They are stormy. Boston is situated in the northeastern US in a region called New England. New England is known for a very specific type of storm, called a Nor’easter. These are serious storms and can be very dangerous. They cause very strong winds (sometimes hurricane force), major coastal flooding, and very heavy rain or snow, which can bring the visibility down to virtually nothing.
Anyone who has spent a reasonable amount of time in Boston has experienced a Nor’easter. We get memorable ones a few times a decade. In February of 1978, Boston was hit by the Blizzard of 78, a catastrophic Nor’easter in which blizzard level snow fell for 33 hours. Snow accumulation in Boston totaled 27.1 inches (69 cm). Over 10,000 people had to evacuate from their homes. 54 people were killed. A ten year old boy walked into the snow outside his house and vanished. His body was found three weeks later, mere feet from his front door.
The Blizzard of 78 is a very important cultural touchstone in Boston. I was not alive for the blizzard, and my friends who were alive were young. However, our parents were the right age to experience the full brunt of the storm. People were forced to abandon their cars on major highways and try to walk to exits. Power lines and phone lines were down in many places. Stores were closed. Public transportation was not running. Gas stations weren’t open. It was impossible to get in touch with friends, family or work for several days.
My parents remember the mayhem of 78 and I grew up hearing about it anytime it snowed. Bostonians have a very specific pattern of preparing for storms. We go to the grocery store (supermarket) and buy milk and bread. I’m not clear on why those are the things we are told from a young age to buy, but that’s what Boston parents do. When you get home, you pull out all your candles and flashlights. If you live directly on the beach, you may have additional preparations, like boarding up windows. And then you wait. You watch the news. Sometimes you lose power. Sometimes you lose heat. It all eventually passes.
This winter we had almost no snow at all before January 26. On January 26, the Blizzard of 2015 (also known as Juno) hit Boston. We had warning, and being a good Bostonian, I went to the grocery store to the day before. In addition to going to get groceries, there also seems to be an unspoken rule among a significant portion of the Boston population that you must also panic and behave irrationally. And that is how, on the day before the Blizzard of 2015, I came to be at a Whole Foods in Charlestown, MA, watching hipsters ram each other with their shopping carts trying to get to the last bunch of organic kale. I got home, pulled out all of my candles, cooked a bunch of safe food, and bunkered down. The state instituted a travel ban that night so there would be no repeat of 78 on the highways.
I live in a basement apartment, so there was a real concern I would not be able to get out of my apartment with the anticipated snowfall. I woke up on the 27th to about two feet of snow against my front door. My stairs were buried. I started pushing the snow around but Astoria just ran right up. My door opens into our fenced yard. The fence is about six feet high. The drifts almost obscured it. The gate couldn’t be opened.
It was overcast and grey. The world seemed sort of muffled. The snowflakes were big and the snow was light and fluffy. It looked like the snow in one of those sparkly Christmas cards. That afternoon, I went to my parents’ house, three doors down. Astoria and I had to leave through our upstairs neighbors’ home because we couldn’t open the gate to the yard. The snow outside was fully up to my waist. It was unreal.
Waist high snow outside of my home.
A week after the blizzard, on February 2, we got another major winter storm. Snowfall in Boston was 16.2 inches (41.2 cm). Then on February 8, we got another storm with a snowfall of 22 inches (56 cm). There was still 37 inches (94 cm) of snow on the ground.
We were not managing well with the snow. I don’t really think this is the fault of any one thing, but we weren’t. We didn’t have enough plows or enough people to shovel sidewalks or curbs. People were walking in the streets because the alternative was wading through three feet of snow on the sidewalks. And the streets were icy and snowy, too. Drivers couldn’t see around snowbanks. Traffic was unbelievably bad. It took me 2.5 hours to drive to work. I live less than ten miles from work as the crow flies. And it took me 2.5 hours to get home, on the train. On February 10, all train service was suspended. Before this happened, there had been trains disabled on the tracks for hours.
On February 14-15, we got another 12 inches of snow (30 cm). Except this time, we also got an unprecedented cold snap. On February 15, when I let my dog that morning, it was -3°F, and wind chill brought it down to -25°F. It was shockingly cold. The transit system couldn’t cope with cold of that magnitude and public transportation was again shut down. The city was offering people $30/hr to shovel off the train tracks.
That’s a six foot fence behind her buried in the snow.
No big deal.
-25 with wind chill
There was also another storm in there somewhere that I can’t remember because so much snow and also it has basically snowed at least a little every day since the first blizzard at the end of January. As of yesterday, this winter has seen a total snowfall of 96.3 inches, second only to the 1995-1996 season, a record of 107.6 inches. But in 1995-1996, that snow fell over the whole season. Boston has gotten 96.3 inches in 22 days. And let’s be real, this winter isn’t over. In Boston, it can snow well in “spring”. My freshman year of college, the day I took my last spring semester final exam, it snowed.
This week, the Boston transit organization (MBTA) announced that after weeks of awful commutes, it would take 30 days to fully restore service – and that’s only if it doesn’t snow anymore. It is impossible to get anywhere. I have friends who live ten miles from work who are spending six hours commuting. I can’t drive to work because if I get stuck for two hours and need IV meds, I can’t drive. I’m afraid to take the train because I can’t get stuck standing for two hours. I also don’t want to be the first person to ever give herself IV meds on the MBTA. The situation is pretty untenable. It takes forever to get anywhere. I have never seen anything like this. We are buried in snow and there isn’t even anywhere to put it.
My street after the most blizzard. Photo credit: Whitney Vieira-Wall
Mountains and mountains of snowSidewalk roulette: is it safer on the sidewalk or in the street?
It’s really isolating and people are starting to snap. The Boston mayor recently requested that people stop diving out their second story windows into the snow. So things around here have been more difficult than usual.
A couple of days ago, I decided to take Astoria for a walk. We were both going stir crazy. So I bundled up and took her to run around in the snow. On the way back, we walked up a sorta shoveled path that terminated abruptly about ten feet before a plowed parking lot. I figured I could trudge through the snow to the parking lot rather than go all the way around.
I was about half way to the parking lot when I fell into the snow. It was up past my waist and I couldn’t get any traction. I was 30 yards from my apartment in the middle of town. I was stuck in the snow. Really stuck.
I struggled for about five minutes before I decided to push the snow back and dig toe holds. I was able to pull myself out. II was sweating all over, my hair plastered to my face, my nose running. lay back on the snow and laughed. Because what else is there to do?
BUT! BUT! It won’t last forever. Spring will be come. Even if it’s a late Boston spring, it will come. And the snow will melt. We might be walking around in sundresses and sandals, climbing over snow piles, but it will melt. I know it all seems so bleak right now, but historic winters like this don’t happen often. So we just need to get through another few weeks and things will get better.
And I know it seems like the world betrayed us. But it’s still the same world. It’s the same world that brings us gorgeous breezy New England beach days and the way the air smells when you walk through the Public Garden in May. It’s the same world that brings us campfires and cookouts and pool swimming the dark under summer skies. It’s the same world that brings us that first delicious day when you don’t need a winter jacket. It’s the same world that is going to bring us more sunlight tomorrow than it did today, even if it doesn’t feel like it’s the same.
Summer is coming.
And besides. This is fucking Boston. We survived 86 years without winning a World Series. We survived the Big Dig. We survived all those awful fucking actors who think they can do our accent. We are not a people who will be defeated by this onslaught of snow.
And there will be grass! And buildings! And detail that isn’t buried under snow!
This is the 78 of our generation. This too will pass. So when you wake up tomorrow and you have dig out your car again and this bullshit is still real, just remember. It won’t always be this hard. Soon it will warm and things will be growing and it will be wonderful.
In December of 2012, my surgeon told me I probably needed a colostomy. I wasn’t really ready to hear that. It didn’t seem like it should be so complicated. I just wanted to be able to go to the bathroom. But my lower GI tract was fundamentally broken. There would be no easy fix.
When I had my surgery in 2013, my rectum was not removed. I think they were worried I would have buyer’s remorse and want to go back to bowel prepping myself twice a week. I remember thinking that leaving the rectum in was a bad idea, but there wasn’t any obvious reason to remove it, and it wasn’t clear if it was a problem by itself or because I couldn’t go to the bathroom. So it stayed. And became a problem.
It was always very clear to me that if I got an ostomy, I would have it forever. I had seen several people about this, gotten several opinions. I did not think I could heal enough to ever not have the ostomy. A fair amount of ostomates get their ostomy reversed only to need a second one placed within a couple of years due to major issues. If I always assumed that if I got the ostomy, that that would be it. I would live with it forever.
I got some news on Tuesday that I wasn’t expecting. My mast cell specialist told me that he felt there was a second surgical option for me. This other option would be more complicated up front and less of a sure thing. But if it worked, I would no longer have an ostomy.
I was stunned. I am stunned. We had mulled this option over for my 2013 surgery and decided it wasn’t a good idea. But now, he thinks, it’s worth discussing. I fired off an email to my surgeon and sat down to stew about it. I’ve been stewing ever since.
I feel like this should be good news but I’m not sure that it is. It’s complicated. It would require removing a lot more tissue. It would be more invasive, with a harder recovery. I think it is less likely to work. I think it will work for a while and then I’ll need more surgery and a second ostomy in a few years. It’s not the safe decision, for sure. It could be a huge failure. In several ways.
I don’t really know how I should feel about this, or how I want to feel about this. I prefer not to think about the possibility of not having an ostomy. I had to write it off to survive. I couldn’t focus on an idea that would probably never be real. So I didn’t.
I’m super casual now about my ostomy. I make jokes about poop and colostomy bags and farting in meetings. I don’t care if people see the bag or the lump under my clothes. I incorporated this reality into my identity two years ago and I never looked back.
I don’t regret getting the ostomy, but this is making me realize that I might be happier if I didn’t have it. It’s a lot of work. It’s a lot of work anyway, but it is especially a lot when you have both an ostomy and a central line. I am sterilizing things constantly. And the ostomy works better than my rectum did before, but I wouldn’t say it works well. It works okay. Maybe less well than what they could whip up surgically. Maybe.
I don’t know how I got here, to this place in my life where it’s no big deal to talk about constipation or my rectum on the internet. It was less of a transition and more like diving into the ocean: sudden, jarring, but not bad. And this is hard for me to say, but I think I am a better person for doing it and I feel like reversing the ostomy would change me. I think when you live with a bag adhered to your body that it makes you less self conscious and less concerned about things you can’t control. I really don’t care about how people perceive me because of it and it factors very little into my self image. And I think that’s a good thing.
And what if they reverse it and it works for a while and then they have to reverse the reversal and I’m in the same position as I am now? Can I live with that? Can I live with the disappointment of regaining normalcy in this one very crucial way only to lose it, again?
When I was young, I had this very clear idea of how my life would go. It did not include getting sick or having an ostomy. It did not include these things being so mundane that I can discuss them anywhere, with anyone, without getting upset. But they are. This is my reality and I don’t know that I can take having to get okay with this reality a second time. I don’t know that I can take even the fear of it.
And the very hardest part: that I don’t want to be responsible for my own suffering. I don’t want to be the one who decides not to take the chance at reversing the ostomy when doctors are telling me it could work.
I’ve always been the kind of girl who goes big or goes home. But it’s getting harder to take risks. And I don’t know whether or not it’s time to just go home.
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.
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.
Optimism when chronically ill is like a cult. You just show up one day and decide to be optimistic. Because you are optimistic, everyone around you is also optimistic, and for a while, that makes it seem like things will be fine. Optimism is a reflex when presenting with a protracted, terrible situation. It is a defense mechanism, a sort of emotional shock that allows us to move forward.
But optimism is also a distraction, a slight of hand. It draws your attention away from the seedy underbelly of this type of thinking. When we are alone, we sit with the nameless fears we don’t share lest we shatter this illusion of positivity. You’re not supposed to talk about the bad things that could happen when you’re part of this cult.
A lot of us are worse off than we tell people, sometimes even people close to us. There are words we can’t give shape to. A sentence we type and delete.
Over.
And over.
When things started getting bad, I decided that I couldn’t control what happened, but I could control people’s expectations. I think I will be fine, but that doesn’t mean I will be. The wrong med during surgery, undercooked egg whites, a bad car accident that triggers anaphylaxis. The night is dark and full of terrors, and all that.
Believing I will survive won’t make me live longer. I can’t control that. But I can control whether or not people are surprised if something happens to me, and I don’t ever want them to be surprised. I don’t ever want anybody to say that they didn’t know how bad it was. It’s painful for me to lay it all out for them, to say the words, to share the risks. But not doing this feels like treason.
We live in a world of secondhand information, where people so often don’t remember how they know things. It makes so much of medicine and disease impersonal, removed. When someone wonders about what it’s like to live with chronic disease, I don’t want them to read emotionless facts and statistics. I want them to read this and feel my heart bleeding across the screen.
I want them to know that we’re optimistic while being scared, that being optimistic makes it easier to be alive with a disease like mine. I want them to know that optimism is a sort of bet, borrowing against a future we know might not exist. I want them to know that optimism doesn’t save lives.
A couple of days ago, a friend of a friend died as a result of chronic illness. He had many heart surgeries throughout this life, so many that he was known as Openheart Dave. He was in this cult of optimism, too.
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.
