I’ve been sitting here stewing about this post for the better part of a week now, and though I know it is something that I need to talk about, it is something that makes me uneasy, as if somehow recalling or mentioning it will bring me right back to where I was that fateful November day seven years ago. Seven years ago, not eight. As I’ve mentioned before, November 2nd, 2006 was the day of my emergency colectomy due to Toxic Megacolon and the beginning of my surgical journey, which commenced a bit more than eight years ago. What few people know is that exactly one year later, on the chilly afternoon of November 2nd, 2007, I got married.
While far from a perfect solution to our country’s healthcare crisis, I often wonder how the course of my life would have changed had Obamacare come to fruition that year. A big believer in fate, I’m fond of the saying that everything happens for a reason and while I am grateful for where I am at today, there were some really rough years getting here. I’m probably getting really vague and will apologize for that now, as this will probably be a somewhat messy and disjointed post, but that’s how all these memories still come up for me – a jumbled heap of highs and lows, of ill-fated decisions made in the depths of a health and well-being crisis so deep that I’m still climbing my way out all these years later.
I had been diagnosed for about two years and my symptoms were somewhat stabilized the summer of 2004 when I started dating my first husband. Never one to beat around the bush, I was up front with him about my diagnosis on our first official date, and didn’t really sugar coat anything. I figured if he could handle it then maybe he was worth keeping, and if he couldn’t, I was better off on my own. He took it well, and our relationship moved fairly quickly from that point, with us moving in together about five months after we started dating. He was ten years my senior and had been married once before; while I was only 24 at the time we started dating, I knew I needed someone who could handle the difficulties of my illness, and he seemed unfazed by all of it.
Though my symptoms would return with a vengeance and then wane a bit, I was able to maintain an insane work schedule during this time, at one point working three jobs in order to be able to pay for my mounting medical bills (thanks to the 6MP causing pneumonia, hemolytic anemia and bone marrow suppression, I was stuck with about $7,000 in hospital bills) in addition to rent and other expenses. Monday through Friday I worked as a counselor at a local mental health facility, weeknights at Ann Taylor and weekends at a hotel – I’m exhausted just thinking about it now. We moved a few times, mostly to accommodate his job changes as he was much farther along in his career than I was at the time. Both of us seemed content to keep things the way that they were; I don’t think he really saw a need to get married again after his first had ended in divorce, and I never really thought about it much. Being the child of a divorce had impressed upon me that a piece of paper does not a relationship make.
I guess it was in the beginning of 2006 that things began to get a lot worse with my disease. Many of the details up until the first surgery are such a blur, so it’s hard to pinpoint exact time frames. I know we had moved again, this time to northern NJ, as I remember having to commute about an hour south to visit with my regular doctors whom I had kept as it was too much of a pain in the ass to try and get situated with new ones when things weren’t even close to being stable. The 6MP wasn’t really working, and I was on massive doses of Prednisone, which couldn’t have made me very easy to deal with. He was often there for me if I needed someone to talk to, and he began to see the very ugly side of this disease that few people knew about. I slept all the time, my hair was falling out, and I spent hours in the bathroom every day. I remember being constantly amazed that he didn’t just walk out.
By mid-year I was barely hanging on to my full time job, as it was taking superhuman amounts of strength and energy just to crawl out of bed every day. September and October of 2006 were months that I’d rather forget, as my body wasted away more each day and I really thought that I was going to die, either from the disease itself or the incredible amount of pain I was constantly in. The final days of that October he had driven me to the hospital after I couldn’t even keep water down and the skin on my stomach was turning a mottled purple color, which later turned out to be from the necrosis of my own intestines inside of me. Awesome.
Without having to go back into all of the surgery details again, obviously I emerged from that hospital stay with an ileostomy and a newfound hatred of my body. I no longer considered myself human, and couldn’t understand how anyone would ever look at me the same way again. And still, he stayed. He proved to be very insightful over the months that followed, and never seemed to view me any differently than he had before the surgery. My job had afforded me paid short term disability, which was a blessing as I navigated the long road ahead to recovery.
Of course, in the months that followed, there were more surgeries and more deterioration in my health, which we’ve gone into already and I really don’t want to rehash again. I was able to return to work briefly before the ill-fated obstruction surgery in March 2007, and once again I was happy to be able to make use of the short term disability offering afterward, as I wasn’t able to return to the office until late July of that year given all of the recovery that was needed. I had thought I was in the clear at that point, given that the reversal of the ileostomy had been completed the month before. I was living with a friend temporarily at that time, as right after the obstruction surgery my ex had received a job offer he could not refuse. I wasn’t able to move with him at that point being that I still needed the insurance that my work was providing, so he had packed up our apartment and moved in with my family outside of Philadelphia until I could find some work in that area. He began to talk about wanting to buy a house, and I was desperate for any kind of stability I could find at that point. We had moved around so much in the last two years, and my body was constantly changing the rules of the game on me, and…he had stayed. I figured if he had stayed with me through all the shit in the previous two years and whatever my disease had in store for us in the future, it was the least I could do to humor him and look around at properties. I still remember trying to find something to wear the day we went out looking with the real estate agent; after six weeks in the hospital on a feeding tube after the obstruction surgery, I had lost an astonishing amount of weight and absolutely nothing in my closet fit me anymore. I have no idea why that memory sticks out, but it does. I don’t think I expected that we’d find something so quickly, but there it was, a two bedroom condo conveniently located to Philadelphia and in a nice neighborhood. Before I knew it, we were putting in an offer, and I was happy I would finally have a place to call home for a while. After three moves with him and so many hospital stays, I was starting to feel very much like a nomad, and I craved anything with permanence. It was a chaotic time, but I really thought the worst of the Crohn’s was over. We closed on the condo that September, just two days after the fistula symptoms had started.
There were a flurry of visits to gynecologists, surgeons, GI’s, and we all knew I was in for more surgery. My parents began talking to me about leaving my full time job, as it was draining me and they wanted me to focus on my health and the long recovery that was going to lie ahead. The location of the condo had meant that my commute was now an hour and a half each way, and the strain was taking its toll. As much as I resisted the idea, I saw their point, and we began looking at insurance policies to see what I could sign up for so that I would have the medical coverage needed in the months ahead.
I expected premiums to be incredibly high, of course, given my pre-existing condition. Never did it occur to me that I would be flat-out denied by every insurance company we approached. Blue Cross, Cigna, United Healthcare, Aetna…the list went on. My mother, a Nurse Case Manager, got on the phone and did her best to try and weave through the bullshit they were burying us in, but the bottom line was simply: No. Denied. So the question then became, now what?
In the midst of this I went back into the hospital for more surgery, this time to re-divert my j-pouch to a loop ileostomy so that my system could rest while I began a course of Remicade infusions to attempt to heal the fistula. They placed setons in the other fistula during this process as well, and the result was a pain so constant and uncomfortable that I practically lost interest in anything other than painkillers, which included food. My weight started dropping steadily again. It wasn’t pretty.
I honestly don’t remember who initially came up with the idea; it may have been each of us at one point or another. At the time, my boyfriend and I had been together for three years and now jointly owned a home, so it didn’t seem such a far stretch to get married. I don’t believe either of us saw it as a temporary fix either, it just seemed like a natural progression of things that would answer the most immediate and pressing need of me getting some health insurance so that I could leave my full-time job, which my body was struggling with every single day. I know I loved him, and I truly believe that he loved me as well, so it just made sense. Since we needed to arrange things quickly, both of us got on the phone with just a few immediate family members to let them know what our plans were, and we set a date for the following week. I was barely two weeks out of surgery. I made it clear to my parents that I did not want anyone else to know right away, even my siblings, because I didn’t want them to associate my getting married with being sick. In reality, I don’t think I wanted to make that association in my own mind, because at this point, I was fairly certain that my life wasn’t going to be a long one, and I wanted to keep things as “normal” as possible. I figured if we had time, we could plan an actual “wedding” for the following year, which would allow our families to celebrate together and would give me something other than my rapidly deteriorating body to focus on. Had I not had that distraction, I’m pretty sure I would have given up any and all hope of ever recovering.
The day was crisp and cool, and I wore a long white coat so that in pictures you couldn’t see how much weight I had lost. I was happy, but that day I began to feel as though I was trying to check off items on a bucket list before time ran out. I could see the looks reflected on my parent’s faces that day; though their smiling faces appeared happy, their eyes told a different story, as if they knew this wasn’t the best choice, just the only one that was available to us at the time.
I don’t mean for any of this to reflect poorly on the man that became my husband that day. He had many good qualities and could have run for the hills any number of times in our three years together at that point, yet he did not. The last fact was really the only one that mattered to me by that point anyway – he didn’t leave. I don’t really think either of us were prepared to make that kind of commitment that day, and to this day I wonder if he felt pressured into it due to my rapidly failing health. No one should ever be put in that position.
A few days later, we got me signed on to his insurance policy at work, and I gave notice at my job. I still needed some sort of income, though my parents had said they would help us bridge any gap in order to cover our expenses until I was well enough to work full time again. I spoke to my old boss at the hotel up north and once again, he was amazing, telling me that he would give me a few shifts each week and put me up at the hotel during that time so I wouldn’t have to worry about the hour and a half long commute to and from our home. I approached my new husband with this information so we could work out how often I would need to work and what he could do to help out in the short-term, and was stunned when he told me he didn’t want to work any extra hours on top of his full time job. Granted, I wouldn’t have wanted to do that either, but for a short term period of time I absolutely would have stepped up to the plate. Again, I reminded myself that I was lucky he stayed with me at all, let alone married me, so I called my boss back and told him I would take four shifts each week at the hotel, which was only slightly less than I had been working before at my full time job. I convinced my parents it would be okay, and they trusted my boss enough to know that if it became too much for me he would be the first one to say so. My parents told me not to worry about the financial part of things, and while none too pleased with their new son-in-law, they helped me out with the difference each month so I could pay my half of the mortgage and my other expenses.
This arrangement went on for about six months, during which time I was able to focus more on my health, get rest and gain some much needed weight. I drove up to the hotel on Thursdays and worked shifts Thursday evening through Sunday morning, when I would make the drive back down south. On my days off, I went to doctor appointments, got Remicade infusions and rested. We started planning details for an actual “wedding” as well, which was set for September of 2008. It gave me a welcome distraction from the train wreck my body had become, as well as a goal to work toward while going through infusions, surgeries and recovery. As I got stronger, I began looking for a full time job again in the Philadelphia area; though I wasn’t out of the woods yet at far as surgery was concerned, I felt bad about my parents having to help me out and wanted to support myself again.
The job search didn’t take too long, and I vividly remember suffering through a few rounds of interviews while the pain from the setons stabbed uncontrollably. I have no idea how I faked being “normal” during the interview process, but they bought it, and I was offered a job the next day. A few days into things, I stopped by the HR Director’s office and told her about my health history, letting her know that I would likely be needing more surgery in a couple of months to reverse the temporary ileostomy. She was supportive and told me I didn’t need to worry. The job turned out to be working with a great team, and I had a lot of support there. The hours were long, but I didn’t care, because I was honestly happier there than I was at home.
Things continued on with the planning of the wedding reception despite the tension that was mounting at home. My husband was becoming more and more frustrated with some of the complications from my illness, not that I could blame him. A chronic illness in a marriage is like an unrelenting third wheel, the inconsiderate and ill-mannered relative who moves in and simply refuses to leave. I continued to meet regularly with my surgeon as we progressed through the treatment plan, and I was laser-focused on a takedown surgery date by the end of June to ensure that I would have enough time to recover from that surgery in time for the wedding reception. I had made it clear to him early on that there was no way I was walking down the aisle with an ileostomy, and he knew I meant it. All was going well until one visit in May, when we realized that the Remicade wasn’t going to fully heal the fistulas on its own. I would need a small graciloplasty to repair the remaining opening, using a piece of muscle from my inner thigh. After telling me this, Dr. S sat down in front of me and took both of my hands in his, telling me that while he fully understood and appreciated my goal of being ileostomy free by the time of the wedding, it wasn’t likely going to happen at this point, as I would need recovery time after the graciloplasty to see if it worked before takedown could be done. I was devastated. My eyes filled with tears and my voice shaky, I told him I was confident we could still make our goal, but if he honestly felt I couldn’t handle the final surgery so close to the wedding date that I would respect his decision.
I went in for the graciloplasty the following week, which was a fairly minor process and I was only out of work for a few days. I continued to keep the image of myself, whole and in one piece, celebrating with my family on the day of the wedding, and it was around that time that I began to admit to myself that this reception was far more about me showing everyone that I had beaten my disease than it was about celebrating the union with my husband. If nothing else, I wanted one day where I felt and looked beautiful, that I could be surrounded by my friends and family in celebration of life. Whatever else happened after that, I knew I would always have that day, and that was all that mattered.
By the end of June, my checkup visit with Dr. S revealed that the graciloplasty had healed the remainder of the fistula, and at that point, there was just one decision left to make. We could go ahead with the surgery to reverse the ileostomy, which would have given me roughly eight weeks to recover to enjoy my big day, which Dr. S felt was not enough time. I sat there and looked him straight in the eye, reminding him of all our history together and how many times I had defied the odds against me. I knew it would be a lot of work, but I knew I could do it. He looked at my face and his expression softened, and he told me that despite all the evidence to the contrary, he believed me. We scheduled the surgery for the final days of June. I was almost there.
Takedown surgery was a breeze compared to all the other surgeries I had in the past, and I was out of the hospital in four days. I took a week off of work, and was going for dress fittings while there were still staples in my abdomen. I didn’t care. I took one look at myself in my wedding dress, all put back together, finally whole again, and I burst into tears. The poor Italian seamstress thought she had done something wrong, and all I could do was thank her, smiling and sobbing at the same time.
My family began arriving for the wedding only weeks later, and the day was everything I had hoped it would be. As I walked down the aisle that day, I looked at each of the smiling faces around me and thought of all the support each of them had given me over the past several years. I thought of all the hurdles I had jumped to get here and how much I had fought through the last six years. I wondered how long this surgery would last for before the next one was needed. I wondered how long my husband could hang in there for, and if we had done the right thing by getting married the year before. He looked happy that day though, regardless of the horrible fight we’d had only the day before on the way to the rehearsal dinner. He was still upset that our honeymoon had to be delayed by two months as it was out of the country and I couldn’t get cleared medically to go until the beginning of November.
The honeymoon came and went, and while we had a wonderful time wandering around Rome and Tuscany, we were simply different people who wanted and valued different things. Once we returned home, I threw myself into work again, much happier there than I was in my downtime at home. As my self-confidence grew from flourishing in my career and taking control of my disease (at least for the time being), I began to realize that someone not leaving you isn’t the same as someone loving you. We retreated more and more from one another until I made the decision that I had fought too hard for too long to simply stay married because he played the trump card of not leaving me when I was sick. Both of us deserved better than what we were giving each other, and I think our reasons for being together had simply run out. We separated two years after we married, and I didn’t know if I would ever find someone again, but I knew someone simply “staying with me” was no longer enough. I remember my stepmother bursting into tears as I told her that, finally seeing that I was beginning to establish my sense of self worth again after living as a shell of a human being for the last five years.
I remain grateful to my ex-husband for offering the support he did during a very difficult time in my life. I am certainly not the easiest person to deal with, and my disease threw us more than our fair share of curveballs over the years. I still feel guilty that he had to marry me under the circumstances he did, but that was our life at the time and I think we each answered a need in the other. I was lucky to come out of that with a very clear picture of the type of person I did want to share my life with, and am happy that we just celebrated our second anniversary last week.
So the next time someone starts bashing Obamacare, take it from someone who didn’t have that option, and the multiple lives that were forever altered because of that. It may not be a perfect solution, but insurance should be available and accessible for everyone, not the chosen few who are fortunate enough not to have drawn the short straw when it comes to their health.