CW: illness, death, and mild gross-ness
I've recently started having conversations about my career development at work. Which isn't surprising. I've been in my current role for almost a year now. My boss and grandboss wanting to talk about my future is a sign that things have been going well; it means they see that I'm talented at what I do and that I add value to the organization. It also means they see potential in me to be able to do more. All of which is supposed to be A Good Thing.
But wow these conversations are hard for me.
If I'm being honest—and I do endeavor to be honest here—this isn't the first time they've tried to talk about this stuff. I've been knowingly putting off the whole "where do you want to go from here and how can I help you" talk since I started in this position. I've deflected every time it's come up, preferring instead to focus on the here and now, the what needs to get done today or next week or even next month.
My boss would be like, "I want to support your career growth in any way I can." And I'd be like, "Thanks, yeah. I'll think about it. So that test we're running next week..."
My grandboss would say, "We haven't really gotten the chance to chat about where you want to go with your career," and I'd say, "Oh yeah, anyway, here are some tactical things on my mind right now..."
Or, one of them would ask the hardest question of all, "Where do you see yourself in five years?" and I'd be left feeling stuck and unsure how to respond, wracking my brain for a good segue to move the conversation in a direction that wouldn't require me to even attempt to come up with an answer.
The thing is, these sorts of conversations are really hard for me. If you asked me the same questions three or so years ago, I would have had answers. I wanted to be a senior manager of lifecycle at the company I was working for and continue to grow my team. I wanted to speak at several conferences a year and get paid to do it. I wanted to be a Thought Leader (writing that now I'm like ugh gross barf). Looking back, I recognize what I really wanted was to be known—something I feel weird about because of family shit and also something I don't judge myself for because of family shit.
But anyway, I kind of knew what I wanted. And then I got sicker.
Which sounds so dramatic—"then I got sicker." Also, it's true. My ability to eat disappeared, probably gradually, though in the haze of memory it seems like it happened overnight. I became perpetually dehydrated. My energy waned. I got weaker and became malnourished. I felt sicker all the time ("sicker" because I always felt sick from my other conditions, but it got way worse). I lost over 20% of my body weight, most of it happening over the course of a couple of months. Shit got bad.
And, as you know, I didn't get better. I won't get better. Instead, I got a feeding tube, which has been its own sort of literal and figurative shit show, with alternating diarrhea and constipation (diarrhea is preferable, but still awful, in case you were wondering), feeding intolerance issues, a much closer relationship with my bile than I'd ever wanted to have, and the realization it's not just my stomach that's slow but everything else too. Like my gastroenterologist told me, I "likely have dysmotility from mouth to anus."
Anyway, all of this is happening and I'm trying to adapt to this new life I'm now living—during a pandemic, even—and naturally I'm having huge thoughts and questions about my mortality. They aren't the kinds of thoughts and questions that result in me asking my doctor or assuming that because I haven't been told anything about my potential lifespan, it probably hasn't changed.
No, they're the kinds of thoughts and questions that have led me down many a rabbit hole of reading study after study to try and understand how long I might live. They're the kinds of thoughts and questions that have resulted in really heavy video calls with my therapist week after week trying to wrap my head around a thing that doesn't make sense, because my whole being seems wired for survival.
The thing is I don't have an answer—I can't possibly. What I've read isn't encouraging, and also all of the studies were relatively small and don't completely match up with my situation. Bodies react differently to medication and treatments. My feeding tube is in place to keep me alive, because without it I would have died. Which is to say, my doctor is already doing what he can and will continue to do so. My tube increases the risk of some life-threatening things—like infections—but it also provides me with life-saving nutrition. Even though I'm still struggling to get my feeding rate up high enough to sustain my body, I'm getting more reliable and balanced nutrition now than I was before.
Even so, I still can't shake the the fear of an early death, though it does get a little less scary each time I think about it. I imagine it's because of desensitization—the more I think about it, the more I get used to the idea and the less afraid I am—and also to some degree I think there's acceptance. I'm not ready to die. So few people are, I'd imagine. But I try and remember that even though suggested lifespans exist for all of us, there's no guarantee we'll get to live them out.
The week after my tube was placed, I was discharged from the hospital in a bit of a rush to get me out before COVID-19 cases started coming in. I'd had some back pain for the last day or two—and it was getting worse—but I assumed it was the whole being in a hospital bed for almost a full week thing that was causing it.
I was looking forward to getting home, getting some Biofreeze on that sore back, and figuring out how even to manage the plastic tube coming out of the hole in my abdomen. Okay, so I wasn't looking forward to that last part and was feeling very much "I hate this thing" (I still kind of am), but I didn't want to be in the hospital anymore.
But that back pain. It just kept getting worse, minute by minute. Between the uncomfortably-large balloon holding my tube in place on the inside of my abdominal wall, the permanent nausea I'd had since surgery, and the worst backache of my life, I couldn't get comfortable. Robbie put some Biofreeze on me to see if it would help, and I noticed it felt weird. Not good weird, just weird. Like I can't even describe it weird. But I still assumed it was just muscle stuff.
We set up my feed and—to try and distract me from everything—made me a spot on the couch that was semi-tolerable, got me some ice (which also didn't feel great on my back), and then turned on some movies.
I started vomiting up formula a couple of hours later. Which, if you think about it, isn't just regular gross because vomiting is gross, but is like extra gross because that shit had to travel all the way up from THE LOWER PART OF MY SMALL INTESTINE. I vomited formula that had been in my bowel. Anyway, we looked at my discharge paperwork and read the part where it said, "If you start vomiting, call your doctor" and we called the physician filling in for my regular doctor, who was away.
"Yeah, that can happen when you go up in feeding rate too quickly," he said. That resonated with me; my hospital care team had tried to get me up to my "goal" rate before I was discharged, standard practice, even though I had nausea. He advised that I slow down the rate of feeding drastically until I felt better. We brought my rate down from 50 ml/hr to 10 and I took a Zofran.
A short while later I started having diarrhea. And really saying "I started having diarrhea" is maybe misleading, because I'd been having it since my surgery. But whatever, I had to go. And that's also when I started vomiting again (into an emesis bag because I was thinking ahead and brought one into the bathroom with me), and also when, out of pure desperation, I had to ask Robbie to come into the bathroom to help me turn off the feeding pump altogether because I couldn't reach it from the toilet and puke would not stop pouring out of me.
Robbie called the doctor again and this time he told us to hold off of feeding for the night and try again the next day if I felt okay. So, that's what we did and I took more Zofran and tried to sleep.
But I couldn't sleep. Not because of nausea, but because of my back. Throughout all of this, my back continued to hurt, and there was nothing I could do to get into a comfortable enough position to doze. And the pain was only getting worse. Sometime shortly after midnight, I realized, "This is not a tight muscle; this is something else."
In the morning, I asked Robbie to call my surgeon. After getting the whole story, my surgeon wanted to get me in for an outpatient CT because the ER seemed like a risky option what with the pandemic. At this point, I was still vomiting, despite not possibly having anything left in me anymore to vomit. And my back was killing me.
The phone tag to get me a CT scan scheduled on such short notice was taking a long time, and there was a point in the early afternoon, when I was curled up on the floor after I couldn't make it back to the couch from the bathroom (where I'd just urinated for the first time all day and it was pretty much brown), and the pain was too awful, that I had a moment of clarity. I said, "This is an emergency and I need to go to the emergency room."
So that's what we did. The wait for Robbie to get the car to the door and to help me to the car was the worst wait of my life. The two-block drive to the ER was the worst drive of my life. And getting triaged and having to answer questions about my elevated heart rate and what was happening was the worst triage experience of my life. All because of that pain.
But soon enough I was in one of the little rooms and the nurse came in and then the doctor came in, and honestly all of this is hazy but I know they took some blood, they flushed my tube with water to keep it patent, and they got me scheduled for a CT scan.
They also gave me pain and nausea medication (because yes, I was somehow still vomiting). The nausea medication started to work a small bit, but the pain didn't ease, not even after TWO DOSES OF FENTANYL AND A DILAUDID. (Did you know that fentanyl is 50 to 100 times stronger than morphine? I didn't before Robbie googled it while I was still writhing—yes, literally writhing—in pain post-second dose.) I think that was the point where Robbie started to get really scared—after they gave me the heavy-duty drugs and I was still hurting so much.
I had my CT scan. It was painful as fuck, because I had to lie flat and the too-filled balloon in my small intestine felt extra too-filled, and also yeah, my fucking back. But then I was back in my room and still hurting and just waiting, and then the doctor came in to say the CT showed air in my abdominal cavity, but that wasn't uncommon after surgery. So then we waited some more, and then one of the doctors who'd operated on me and saw me daily during my hospital stay came in and gave us more info: my white blood cell count was really high and the air in my abdomen was likely an infection. I was being readmitted and would have further testing the next day to make sure my intestines hadn't perforated.
It was that evening, lying in the hospital bed while Robbie sat in the chair by my feet, having done some research about how perforated intestine situations usually work out, that I thought I might die. The thought had certainly occurred to me earlier in the day with all of the pain I was in; it felt like I was dying (and I basically was, given I had an infection that could quickly turn into sepsis if untreated). But it wasn't until I was safely in the hospital, connected to an IV of antibiotics, and had done what I needed to do that I allowed myself to explore the thought.
And "explore the thought" is really quite generous. Because even though the drugs did nothing for my pain and little for my nausea, they sure as shit made me high and sleepy, and I was more or less sleeping and thinking of death and sleeping.
Obviously, I lived. I'm not a ghost writing this. (Lol ghost writing.) When I woke up the next morning, I still felt nauseated as hell but my back was feeling a lot better. The antibiotics were clearly working. I had a truly awful barium study that showed my balloon was too big, so they took some fluid out and wow that got way more comfortable, and also they found I didn't have a perforated intestine.
The consensus was that my feeding rate had been brought up too quickly for my body to tolerate, and that the force of vomiting or dry heaving or whatever—things I'd done a lot of in the last week—caused air and fluid to leak out into my abdominal cavity and fester. I got a prescription for antibiotics and was discharged again. I felt much better than I had since surgery, though exhausted and also garbage from the barium in my system. We went home, and over the next few days, things started to get a bit easier. I felt like I could finally relax a little.
But there's something that, even after three and a half months, I haven't been able to shake: if we hadn't gone to the hospital when we did—if I hadn't had that moment of clarity on the floor—I don't think I would've made it to the next day. It feels hella dramatic to say, but I was close to dead, and while I lived and am, as previously discussed, not a ghost, I'm now haunted by how close I came to being one. I'm now haunted by how close death is all of the time for all of us.
Before all of this—my tube and subsequent infection—I was already starting to see my priorities in a new light. After being diagnosed with gastroparesis last June, my job title lost meaning for me, and a more supportive and secure work environment became much more more important. Better health insurance became more important. I left my in-office job as a director of marketing at an early-stage startup to be a program manager at a mid-sized tech company with higher pay, much better benefits, and remote work.
I started placing less value in the idea of a career, and started to ask myself what I needed in life. I made work work around my illness, unapologetically going to doctor's appointments (something that felt much harder when I had worked in an office), taking breaks, stopping work when I felt extra garbage, and overall giving less of myself to my job. These might sound like very small and obvious things, but they were big steps. At my last job, I was given a hard time for working from home when I needed. It was a relief to finally have space to take care of myself.
I was able to start making small changes, in part, because I work for a company that encourages employees to lead full lives. But, also, I was able to because I viewed my productivity and skill at work as less a part of my identity and more as a means to a health insurance and salaried end.
Put more plainly, I realized that I matter more than the work I produce.
So these career conversations. They're hard. Because the short answer is: I don't care about a career.
If I had the choice and didn't have to worry about a salary and healthcare to cover the expense of my tube and feed, and all of the maintenance, and also oh yeah my other health problems, I wouldn't work. It doesn't matter how great the company is or how well they treat employees. I'd read and write, and maybe color and knit, and go for walks, and maybe watch TV and movies instead. But I definitely wouldn't work.
And yet I don't have that choice. This is the US in 2020 and I do need health insurance and a salary. I have to work. But I've stopped avoiding these career conversations because I know they won't get any clearer later than they are now.
I've talked to a coach. I've talked to my therapist. I've been exploring what I want, trying to pull things apart in the murky soup that is my brain mush these days. I'm not approaching it as a desire for career development. Instead, I'm reframing it to be about what I'd like to be doing in my work time, because it's a lot of time.
I know some things I want and some things I definitely don't want. For instance, I want to continue to make decisions and define the strategy for the work I'm doing, and I don't want someone hired over me to manage it instead (not that I think that would happen). I want to be a people manager for a small team because, ironically, I do like helping people with their career development—and also I don't want to lead a cross-functional team or be a generalist again. I want to be in a position where I still get to do the work and not just oversee. I never want to have to make a major budget decision.
While I'm certainly capable of all of the things I don't want to do—I just don't want to do them. Time feels extra precious. I don't want to spend mine that way.
In some ways, it feels like the easier option would be to lie. To look at upward mobility and be like, "yep, that's for me" through gritted teeth, because maybe the conversations would be over faster and be so much easier since it feels like that's the expected answer. But what if that actually happened? What if I woke up one day as a director of marketing again and had like eight direct reports and had to spend my day advocating for my team's budget or something like that? No thanks.
I also know myself better and know that that kind of lie—the kind that deals with who I am and what I want—that's not me. I know that I'm a vulnerable person, even if it's scary as fuck. And so I'm approaching these conversations with clunky and nervous honesty. I'm allowing space for myself to not know all of the answers. I'm figuring it out as I go along.
And the next time I'm asked the hardest question, I'll tell the truth.
Where do I see myself in five years? I don't know that I do.