I promised when I started writing here that I would write about the vulnerable and the ugly just as much as I write about the beautiful. Well, here it is. The raw, vulnerable and ugly.
Life has been heavy lately. That is probably the simplest way I know how to say it, even though there is absolutely nothing simple about any of this.
I guess there are a few different ways I could look at where I am right now. There is the grateful part of me, and she is very real. I am grateful that I’m alive. I’m grateful that after severe calorie and protein malnutrition, as far as we know right now, I didn’t end up with permanent damage. I’m grateful my body is accepting nutrition again, that I’m eating, that I’ve gained weight and that in so many measurable ways I am doing better. I thank God for that because I know this could have gone differently.
People are happy to see me getting better, and I understand why. In a lot of ways, I am better. But in a lot of ways, I’m not, and that is the part I haven’t really known how to explain.
Behind all of the gratitude is still me, the person who feels absolutely everything and has never really known how to turn the volume down. There are so many emotions wrapped around what has happened over the last few months that I don’t even know where one ends and another begins anymore. There are what-ifs I don’t say out loud, frustration that comes out sideways, fear I try to reason myself out of, happiness that I’m getting better and guilt that I can be getting better while simultaneously feeling like I’m falling apart emotionally.
Somewhere in there, depression found the cracks and quietly worked its way back in. I didn’t really notice it at first because there was so much else happening that being exhausted, overwhelmed and wanting to crawl into bed seemed pretty reasonable. But lately my bed has become my favorite place. My brain doesn’t want another thing to process. There are moments when I don’t even feel sad exactly. I just feel numb, going through the motions because things still have to get done whether I have anything left to give them or not.
So, welcome back, Depression. Apparently you missed me.
I know this too shall pass. I have lived enough life to know that feelings move and seasons change and somehow I eventually find my footing again. Knowing that doesn’t make the middle of it any lighter, though. And right now, damn, does the middle feel heavy.
When I was in the hospital, I gave updates constantly because everything was happening in real time. Then I came home and got quieter. I think part of that was because I was so busy trying to navigate actually living this that I didn’t know how to keep explaining it too. Suddenly there were weekly appointments and weekly labs, endless MyChart messages, medications, formula deliveries, feeding-pump supplies, FMLA, Short Term Disability that still hasn’t been processed, credit cards becoming late because I haven’t been working, and all the completely ordinary responsibilities of life that apparently didn’t get the memo that mine had temporarily fallen apart.
There was also embarrassment. Frustration. A lot of remembering how resilient I am and trying to lean into that version of myself because she has gotten me through a hell of a lot before. Except lately I’m tired of needing her. I’m tired of everything needing to be something I overcome.
I wake up attached to nutrition and fall asleep attached to nutrition. There is this obnoxious mechanical whir from the pump that has become part of the soundtrack of my house. I know its sounds now, which feels like such a strange thing to say. I know the normal hum and I know the beeps that mean something needs my attention. If I increase my rate and the formula runs out before I wake up, sometimes that alarm is what pulls me out of sleep. Then I’m half awake, disconnecting everything and priming the pump because air has gotten into the line before I can even think about starting my day.
Or like this morning, when I got up, bumped my pole and the bag fell, spilling liquid everywhere, only to realize that when it was beeping at me at 3:30 a.m., my sleep-deprived brain apparently forgot to make my hands close the lid of the bag. Fun.
It never really becomes background noise to me because every sound, every alarm and apparently every puddle on the floor is another reminder that this is still happening.
And visually, it isn’t even the tube itself that bothers me the most. It’s the port sticking off my cheek. I hate it. There is no subtle way to hide it, no angle where I can pretend it isn’t there. It sticks off the side of my face like this obnoxious little medical flag announcing something about me before I ever get the chance to decide whether I want anyone to know.
I still haven’t found tape that will reliably hold everything in place without creating another problem. I tried skin-colored tape. I tried silicone because of my adhesive allergy. Eventually I decided screw it and bought the actual NJ adhesive strips with designs on them. If I have to walk around with a tube coming out of my nose and a port sticking off my cheek, I would rather put something there that gives me a reason to smile than stare at some boring medical crap every time I look in the mirror.
The inside of my nostril is raw. The tube pulls constantly, and certain foods, especially breads, create this awful sensation that is hard to explain unless you have felt it. It feels like someone inside my body is grabbing the tube and trying to pull it farther back in, making it incredibly taut against the inside of my nose. There is no shifting away from it or getting comfortable because wherever I go, it comes with me.
And yet, I’m eating again. Actually, sometimes I am EATING.
My appetite came roaring back, but apparently it didn’t come back with any sense of moderation. I seem to have developed this ridiculous pattern where I binge for two days because I simply cannot get enough food. My stomach can be visibly distended and hurting because I am so full, and I still want to eat. Then for the next few days I can barely manage a bite. I’m still struggling to drink enough water. None of it has found a rhythm yet. My body feels like it is trying to remember how to be a body again, and I’m trying to remember how to trust it.
Then there is the weight. I lost around thirty pounds. I have gained 18.5 pounds back. That should feel like a victory, and medically I know it is. My body needed it. I know that. The weight has been its own mindfuck, though. I watched myself become much thinner. I watched clothes start hanging off of me. I lost strength. I barely ate. I became dehydrated. I ended up in hospital rooms, hooked to IVs, and eventually with a tube shoved through my nose because my body could no longer reliably give itself what it needed.
I don’t want that body back, but apparently knowing that doesn’t automatically make me comfortable inside this one. Anyone who actually knows me knows how intensely I struggle with body dysmorphia. A slow change gives my brain time to adjust. This has been anything but slow. My body changed drastically in one direction and then rapidly started moving back in the other, while my mind was somewhere several miles behind trying to catch up.
When the body dysmorphia gets loud, it is all-consuming. It fills the seldom-quiet spaces in my brain. The fullness in my stomach becomes something I notice. The way clothing touches my body becomes something I notice. A reflection I wasn’t expecting to catch becomes something I notice. And then the words people have said to me over the years start playing again, because apparently the brain likes to save the sentences that hurt us in a special little file for exactly these occasions.
“I like you skinny.”
“This is how a real woman is supposed to look.”
I hate that those words still have power. I hate even more that knowing they shouldn’t have power doesn’t make them disappear.
Today I was in the shower and saw how much hair I was losing from what malnutrition did to my body. It was alarming. I stood there looking at it and wanted to cry because it felt so incredibly unfair. I’m eating now. I’m getting continuous nutrition. I’m gaining weight. I’m doing what I’m supposed to be doing, and my body is still showing me the receipt for what happened months ago.
That did something to me today because I think part of me has been desperately trying to believe that because I am getting better, what happened is behind me. Then I look at the hair in my hands, or my hands start shaking while I’m trying to do something requiring fine motor skills, or my heart rate climbs while I’m literally lying down, and I’m reminded that my body might not be as far ahead as I want it to be.
And I desperately want it to be.
Going back to work is getting closer, and I feel like there is this invisible 10 day countdown running somewhere that only I can hear. It feels like everything has to somehow fall into place before I walk back through those doors. The tube should be gone. My labs should behave. I should be stronger. I should be able to eat normally and drink enough water. I should be able to stay upright and functional for ten hours. My paperwork should be figured out. Short Term Disability should finally be processed. The bills should stop staring at me. My brain should pull itself together.
I know there isn’t actually a magical date by which my body is required to have its shit together, but try telling that to the elephant sitting on my chest. Because underneath the relief of returning is the thought I really don’t like looking at too closely: what if I’m not as strong and healthy as I want to think I am?
There is absolutely relief in going back to work. Financially? Hell yes. I need my paycheck. I also miss the students. I miss having somewhere to be in the morning and a reason to get dressed. I miss the stupid little pieces of an ordinary workday. I miss feeling useful. I miss my routine and my independence. I miss having parts of my life that aren’t somehow connected to doctors, labs, appointments, medications, nutrition or whatever my body has decided to do that day, and I want them back. But “going back to work” sounds so much simpler than what going back actually looks like for me right now.
It means continuing to take time off for appointments while losing PTO. It means being around 350-plus people every day with this damn thing coming out of my nose. It means bringing cartons of formula with me and keeping nutrition running while I work. It means either carrying around the feeding-pump backpack like a child or having the thing sitting on my desk because the tubing only reaches so far, all while its motor whirs away beside me. And again, I’m still not even close to 100% yet.
And then there are people. Students. Coworkers. Parents walking into the office. Faces. I read faces. I always have. I notice the tiny change in someone’s expression, the second glance, the person who looks and then tries very hard not to look. I hear the quiet words people don’t say, and sometimes those are louder to me than anything they could actually say. Rejection is a real, living beast for me. It can be every bit as loud as the body dysmorphia.
Other people’s opinions shouldn’t matter. I know that. I could probably give someone else a beautiful speech about why they shouldn’t care what anyone thinks of them and believe every single word I said. Then I would walk away and worry about what they thought of me. That is the irritating reality of knowing something logically and feeling something completely different emotionally.
And what if I get there and my body can’t do it? There are still times when thirty minutes or an hour of doing something wipes me out for the rest of the day. How do I turn that body into one that can be gone for ten hours? I don’t want anyone disappointed in me. I don’t want to be the person who comes back and then can’t handle it. So part of me already knows what I’ll instinctively do. Smile. Keep going. Make sure everyone else thinks I’m okay. If only I weren’t so damn sentimental about everything, maybe I could actually pull that off.
Then there are still all the unknowns.
My phosphorus has apparently decided it has no interest whatsoever in consistency. It drops, sometimes really low, then comes back up, and we still haven’t found a pattern that makes any sense. Phosphorus is essential to ATP and the energy our cells use, so when mine nosedives, it isn’t just a red number sitting in MyChart. I feel it. Getting out of bed becomes harder. Everything aches more. I get restless. I feel weak and completely depleted. One lab number can change the way my entire day feels.
And maybe the biggest unknown of all is that I am still 100% undiagnosed. We still don’t know why this happened. That scares me more than I probably let on. I can eat again. I can gain the weight back. I can get stronger, go back to work and eventually get this tube out of my face, but none of those things answer the question of what caused my body to suddenly stop tolerating food and hydration in the first place.
So even while I’m trying to move forward, there is this cloud that follows me around asking, what if it happens again? What if I finally get all the way back to myself and one day food starts making me sick again? What if the pain comes back? What if I start losing weight again? What if I end up right back where I was? I don’t have the comfort of being able to say, “They figured it out,” because they haven’t. And it is really hard to feel safe inside a body when you still don’t know why it stopped feeling safe in the first place. Personally, I still think my pancreas is involved.
But I think deep down, some of my fear comes from knowing instinctively that I’m not okay yet. I feel it. I’m not healthy yet. I’m still completely depleted in ways that gaining weight and being able to eat again don’t necessarily show.
There are still days when I eat almost nothing, or I eat something so small that I know it isn’t contributing anywhere near enough nutritionally to what my body is trying to rebuild. I still feel dehydrated every single day. I don’t even know anymore if not drinking has become a habit after months of struggling with it, if my body still isn’t giving me the right cues, or if it’s some combination of everything. Right now, though, I have the tube. If I’m not drinking enough, I can put water through it. If I barely eat, I still have formula running into me. There is a safety net attached to my face that I absolutely hate.
And maybe that is one of the hardest things for me to admit. I desperately want this tube out while knowing there is a reasonable part of me quietly saying, You’re probably not ready yet.
That is a silent battle I fight every single day. Sometimes hourly. Sometimes multiple times within an hour depending on where my head is. I look at the tube and want my face back. I feel the port against my cheek and want it gone. I hear the pump and want silence. I want to sleep without being attached to a machine. I want to go back to work without carrying nutrition around with me.
And then there is the other voice asking, But what happens on the day you barely eat? What happens when you realize at the end of the day that you’ve barely had anything to drink?
That is where wanting it out and knowing I still need it collide. I hate that the thing making me feel the least like myself is also giving my body something it still cannot reliably give itself. Maybe that is what scares me most. Not simply that I could get sick again, but underneath all of my determination to move forward, I can feel that I’m not done being sick yet.
I’m still shaky too. Sometimes I’m doing something with my hands and my fine motor skills start shaking, and instead of feeling compassion toward my body, I get pissed. Why am I getting continuous nutrition and still this weak? Why does my heart rate keep climbing, even when I’m lying down? Why can’t I increase the medication helping my blood pressure without ending up with worse headaches? Why can’t my body just pick a single lane for a minute and stay there?
Every one of those things sounds relatively small when I separate them. Together, they feel like Jenga. I can almost see my tower swaying. Pieces are being pulled out from underneath me while more blocks keep getting stacked on top. The foundation feels less stable at the exact same time the load gets heavier, and I’m standing there trying to keep everything perfectly balanced because God forbid the whole thing fall in front of somebody.
I think that is part of why I have been avoiding some of my brain-spotting therapy appointments too. I know. Believe me, I see the irony. The exact moment I probably need therapy most is the moment I don’t want anyone touching the wall I’ve built around all of this. It feels like everything is collecting behind an invisible dam. I’m afraid if I poke one little hole in it, the whole thing is going to break open, and I don’t want to do that in front of someone else. So I hold it, which, yes, is probably exactly why it feels so heavy.
My GI doctor keeps reminding me that this is a marathon, not a sprint. I hate when she says it. Not because she’s wrong. That might actually be the most annoying part. I just don’t want to be in a marathon. I am a sprinter. Once I’m in, I’m all in. Give me the problem. Tell me what I need to do. Give me the finish line and watch me go.
I don’t want to pace myself through months of uncertainty. I don’t want to lovingly embrace the journey of having a tube shoved through my nose into my small intestine. I don’t want this experience to teach me patience. I want the tube out.
I’m meeting nearly every goal they told me I needed to meet except reaching the tube-feed rate they have as my goal, and that one gets tangled up with everything happening inside my head around food and weight. My brain cannot make sense of running that much formula while I’m also eating. I didn’t consume that many calories on a normal day before this entire shit show happened. So when someone looks at the pump and sees a rate that needs to increase, I see the calories. I feel my stomach. I see the scale. I see my body changing. I hear those old words.
It isn’t just pressing a button. I am so desperately ready to be done with this tube that I have already imagined setting my phone up, hitting record and pulling the damn thing out myself. I’m not going to. I know that decision needs to be made with my medical team. But the fantasy is alive and well.
And somewhere in all of this, I keep catching myself minimizing it because I know there are people who have it worse than I do. Of course there are. There will always be somebody living through something that looks bigger, scarier or more devastating than whatever we are carrying. I have perspective. I know how lucky I am in countless ways. I know there are people who would trade places with me without thinking twice.
But this is my bad, and I’m trying to stop apologizing for that.
Someone else’s pain does not require mine to become smaller. Their battle doesn’t diminish mine, just as mine doesn’t diminish theirs. This happened to my body and my life. It changed my relationship with food. It changed my body. It affected my finances, my work, my mental health and the way I move through ordinary days.
I’m allowed to say this has been hard. I’m allowed to be grateful and still be angry. I can thank God that I am alive and getting better while standing in the shower holding my hair and wanting to cry. I can desperately want to go back to work while being scared I won’t physically be able to do it. I can be incredibly grateful that I gained back weight my body needed while struggling to look at myself in the mirror. I can know that I am resilient and still be completely exhausted from having to be resilient. I can be better and not be okay yet.
That last is probably the hardest for me to accept.
Everyone around me gets to see the parts of recovery that are visible. I’m eating. My weight is coming back. I’m not lying in a hospital bed. I’m talking about returning to work. I laugh. I go appointments. I have good moments. Those things are real, and I don’t want to take anything away from them. I am getting better. I just wish getting better felt better.
Because inside of me there is still this invisible countdown, a body I’m trying to recognize again and a brain that is so incredibly tired of thinking. More than anything right now, I am desperate for some gentleness for my soul. Not another reminder that I’m strong. Not another opportunity to prove how resilient I am. Not another lesson I can someday look back on and be grateful I learned. Just gentleness. Something soft enough to let me put all of this down for a minute without worrying about what will fall apart while I’m not holding it.
My GI doctor will probably continue reminding me that I’m in a marathon, and I will probably continue wanting to tell her exactly where she can put her marathon. Maybe someday I’ll appreciate the metaphor.
Today, I’m tired.
Today, I’m better and I’m not.
Today, both are true.
And today, I think I just need life to be a little gentler with me while I find my way through the space between them.
Express Yourself!