This post is a very personal one for me, and one that took me a bit of time to write, as it is still something I struggle with almost daily and is a subject very close to my heart. It’s such a rare thing to get paid to do something that you truly enjoy, and though my path to get there wasn’t a direct one, I felt lucky to have found it, and am grateful to this day for all the people to whom it has introduced me and the places it has brought me in life, both literally and figuratively.
The role of work is one that many with IBD have a love/hate relationship with. Work helps give us a sense of purpose, allows us to meet people and socialize outside our normal circles day to day, and offers a welcome distraction to the daily rigors of symptoms. Many will struggle at times with being able to work, depending on the symptom severity, the type of work that you do, and how understanding your employer is about your disease.
While I have an educational background in psychology, I fell into a career in hospitality in my early twenties as I was attending graduate school. As I mentioned early on, this is essentially the same time that my IBD symptoms started, so I have never really known a time in my working life that didn’t involve all of the many factors we have discussed earlier. Simply putting myself through graduate school, I started work at a hotel at the front desk and within a year transitioned to an Assistant Manager and finally a Director role. I took to the role like a duck to water, and was fortunate enough to have an amazing boss who was aware of my symptoms and was very flexible with my schedule needs as I bounced from one doctor appointment to the next. I worked mostly during the days and would then hop on the train across the street after my shift to attend my graduate school classes in New York City three days each week.
I loved being part of a team, part of a business that kept going round the clock even after I left at the end of the day. I loved the constant change and the fact that no day was similar to any other. I was good at it too, as I found out, and the long hours and intense days kept me distracted from the disease that was beginning to take over my life. I ran a team of about twenty at the time, and over the years the size of the teams would grow to thirty and most recently to around seventy. It is difficult and often thankless work, but there is nothing quite like the feeling of becoming part of a hotel or restaurant “family”. Sure, in other professions you make friends with coworkers and commiserate over your day to day challenges. I’m talking instead about partners in crime, those who will help you distract arriving wedding guests while a dead body is snuck out the back door by EMS, who will help you try to have a rational conversation with an intoxicated individual who is attempting to receive oral sex from a jack-o-lantern, and who will give you a laugh when it’s been a fourteen hour day and there’s still no end in sight.
Over the years, my teams and I went through more than some people do in a lifetime. Unable to have children of my own, in some senses I do very much view them as my “children”, and I mean that in the best of ways. I have watched the young ones develop in their own careers, some continuing on in the hotel industry, and others pursuing opportunities in nursing, music and education. I have held some while they cried over the loss of family members, have helped others apply to college, and have been asked for bail money on several occasions. I have led teams through difficult circumstances, such as the death of one of our own and an internal theft ring that left us shaken to our core and questioning how much trust we could really have in one another. Through all of that, I could remain steady, remain the rock that held everyone together and kept us reaching for our goals, even as my own body crumbled and I feared the deterioration that was happening on a daily basis.
Each time I began a new job, I’d let my General Manager and our Human Resources Director know about my condition, just so they would be aware in case anything sudden were to happen (an obstruction, a surgery, etc). I prided myself on the fact that my symptoms never affected the quality of my work or my dedication to my job. I was constantly being given more responsibility, beginning to crave it like a drug, as I proved to myself and everyone else that I could do this, and that my disease wasn’t going to stop me, despite constant warnings from my doctors that my sixty to seventy hour workweeks weren’t doing my body any favors. I convinced myself that I could be the exception. I was in charge, not my body. I led a team of seventy people, for god’s sake! How could I be in charge of all of them and not my own disease?
Despite some bumps, overall I managed very well until this last year, when a job transfer for my husband relocated us from Philadelphia to Austin, a move which I was very excited about and was able to find a great opportunity of my own. The hotel was massive, the biggest in the city, and the last four of my predecessors had gone on to work as Regional Directors of Operations for the company. It was a huge team, but I had always had great confidence in my ability to lead a team and produce results, so I wasn’t worried. Determined, yes. My husband was not as thrilled with my new job, worried that I was finally going to push my body to its breaking point. The fact that I did not listen to him wasn’t so much about the fact that I am stubborn as a mule (which I am), or that I didn’t value his opinion (which I do). In the ten years since I had been diagnosed, I had challenged every limitation I had ever been given and I had won. Doctors didn’t know if I would work again, eat again, even survive several of the surgeries that I had undergone. The final takedown surgery I had in June of 2008 was only about eight weeks before I got married, and I had to convince the surgeons to do it, as they worried that I wouldn’t have enough time to recover before the big day. I did. I walked down the aisle that day like a boss, proving all the naysayers wrong once again. Each challenge had given me more of a craving for that high that comes from doing what many others thought wouldn’t be possible. This was about me proving to my own body, to the disease that was still raging inside of me, that I was the one in charge, goddamnit, and I wasn’t going to let my own body get in the way of the future I had worked tirelessly to pave for myself.
I started the new job within three days of relocating to Austin, and it was a great coping mechanism for moving to an area where we knew absolutely no one. I was thrown into a team and hit the ground running, doing what I do best, putting out fires as they arose and restructuring our team from the ground up. I informed the HR team about my illness as I always had in the past, never thinking my body would start to retaliate so quickly.
The hours were insane and the stress was constant. My husband and I saw incredibly little of each other, and the days at work were often so crazed that despite my best attempts, I missed meals, slept like shit, and postponed doctor’s appointments. The obstructions started again, as did my bouts with pneumonia and the flu. After about six months, my husband pleaded with me to look for another job away from the operations side of things, toward something with more stable hours in the hotel world, like human resources or sales. And I tried. I did. I could see that my body was rebelling, so I thought I would just shift gears and regroup a bit. But no one wanted me for anything other than my operational background, because that’s where I had a great track record and produced all-star results.
The weeks came and went, and as my health continued to decline, my husband began talking to me about just quitting completely, and taking some time off to rest. That notion was inconceivable to me. I had never been without at least one job since I was fourteen, and was certainly not ready to face my disease head on, without even the pleasantries of a distraction from work. There were so many straws piling up so fast, it was hard to tell which straw actually broke the camel’s back, but the situation came to a head one November day when my husband had to fly out of town at the last minute to visit his ailing father who was back on the east coast. I had been fighting off a cold for a few days and was feeling like crap, but I assured him I would be fine and that he needed to go tend to his father. The weekend coming up was going to be a huge one at the hotel, as it was the weekend of the Formula One Grand Prix, and I knew that I would be working fourteen or fifteen hour days anyway, so I figured this would keep him off my back.
The cold continued to get worse, and by that Friday, I was sitting in my office bundled up in every article of clothing I could find, freezing with my teeth chattering as my body trembled violently. I had been at work since 7am that morning, and by 8pm that night, I wasn’t sure I would even have the strength to get myself home. There were still tons of guests arriving, but I knew my team had things under control and I left the hotel. Talking to my husband a short while later, he convinced me to go to the ER, which at that point I agreed was a good decision. After about an hour there I was diagnosed with pneumonia again, and even in my severe state of denial, I knew there was no way I was going to be able to go to work the following day. I called my boss to tell him and let’s just say that the response was less than I had hoped for. Despite all of the hours I had put in, despite all of the results I had already given them, despite my warning them early on about my health condition, I was being told in no uncertain terms that I needed to be there the next day.
Like an idiot I went in, did what I needed to do and left early that day. I called in sick for the next three days and when my husband came home, I told him I was ready to put in my notice. Me being me, I wanted to give them about a month’s notice, not because I felt I owed my boss anything, but because I owed it to my team to tell them individually, wrap up any projects we were working on, and help find my replacement. My husband reluctantly agreed, and the following week I sat down and told them that I would be resigning. I don’t think they believed me, and I didn’t even believe the words myself as they came out of my mouth. Alarms were sounding off inside my head, reminding me that I had worked so hard to get where I was, and that I was so close to reaching the top. The top of what? Was this what success looked like? I was 33 years old, fifteen pounds below my normal weight, hadn’t slept well in months and hadn’t spent a single day off together with my husband in close to eight months. I was tired, weary and knew that I was giving in to the disease. It was one of the worst days of my life.
It has been almost a year since that day, and I am physically much better than I was then. I am now working part time in a different field, sleeping eight hours a night and eating well and regularly. I spend nights and weekends with my husband, which has been wonderful, and I’ve caught up on all my doctor appointments. Save for the last few months, where I had pneumonia again and four obstructions requiring hospitalization (I have a lot of scar tissue and need to get that surgically corrected), I’m in a much better place, health wise. And I know this is the part where I’m supposed to say that I’m so glad that I quit and it was the first day of the rest of my life and that I don’t miss it. The truth is, I can’t say any of that. Do I know that logically it was the best choice for me and my health? Of course. I can’t make my heart understand that, though. I so miss my crew, my sense of independence, and the career path that I had set for myself that was doing so very well. I miss the feeling of walking out of the building at the end of a long and crazy day, knowing that the shit almost hit the fan but that my team pulled it off, and the guests were never the wiser. I miss watching my team members learn and grow, seeing the results of all their training and practice. I wonder what I could have been. I wonder if I will ever do anything again that will give me the same sense of satisfaction, that feeling of watching a team in motion with all its moving parts and knowing that I helped to create that. I don’t know. It is something that I think about every day and that will probably never leave me. We’re always told as children that we can do anything we put our minds to, and I believed that for a long time. But what if you can’t? What if your own body is your worst enemy? How do you fight an aggressor when it is your own reflection in the mirror? I wish I knew the answer, and I hope I’m getting a bit closer to it each day.