Champagne and Hospital Food: A Love Story

Senior year of high school, on the day of my long-awaited AP Calc exam, I found myself writhing in pain in a hospital bed on a morphine drip that didn’t seem to be doing a doggone thing.

Meanwhile, in another hospital bed in a different hospital across town, the love of my life was doing the same thing.

The cause of my pain? Endometriosis.

His? Sickle Cell.

As my parents filled out a novel-sized emergency surgery waiver packet, the fallopian tube that had twisted over on itself due to the weight of a baseball-sized cyst, seemed to magically correct itself. According to a last-minute ultrasound, the doctors determined that the cyst had ruptured therefore releasing the pressure on the tube. After hours of excruciating pain, I avoided surgery for the day and was discharged the following morning.

Although it would be another 4 years before I’d get an official diagnosis, that day was the first sign that something inside me was terribly wrong. Every month since my first period at 13, I would get hit with such horrendous cramps that I would vomit daily. Bad periods seemed normal, but THIS, this day was most definitely not normal.

For my high school sweetheart, Rob, that day was unfortunately very normal. From the moment he was born, he’d spent countless days and nights in hospitals. By the time I met him, we were 16, and he was so good at hiding his pain, I almost forgot he was ill. Hanging out in hospitals just became our thing. Who needs champagne and filet minion when you’ve got pudding and mystery meat? We would watch “The Little Rascals” on the one channel the hospital television provided. We would joke about the nurses coming in to check vitals always at the EXACT moment you finally doze off. We made a young friend in the pediatric ward with a liver condition and killer drawing skills, who would draw us pictures of Tweetie Bird and Batman. I would bring Rob his favorite -- Taco Bell crunchy 5 layer burrito no sour cream add Baja sauce -- and every time he would get discharged, I would make him a Tiramisu (or “Tira Miso Soup” as he would call it) to bring to his house. Despite the circumstances, life was good.

Rob and I dated on and off while I went away for college at Duke University. While at Duke, my endometriosis pain worsened, and my room mates would often rush me to the on-campus hospital in the middle of the night after my muffled cries would inevitably awaken them. Luckily, Duke Hospital happened to have one of the leading departments for Endometriosis research and treatment in the country. It can typically take up to ten years for a woman to receive a diagnosis, but my junior year, at the age of 20, I underwent laparoscopic surgery to remove the cysts and scar tissue that had been wreaking havoc on my body since my teens.

For those who are unfamiliar with what Endometriosis is, its when the lining of the uterus that normally sheds and bleeds out during menstruation is located in other parts of the body causing sufferers to essentially bleed internally once a month. Since this blood has nowhere to go, it forms little bubbles of blood which get bigger and bigger each month with every period. As this blood gets older, it turns dark brown resulting in large brown cysts affectionately termed “chocolate cysts.” Although it is common for women to have cysts for a multitude of reasons, these chocolate cysts are a sure sign of Endometriosis. Because these cysts are so traumatic to the body, scar tissue often forms, and these adhesions can latch on to various parts of the body. In my case, the scarring was so severe that all of my lower organs were adhered to each other and to the walls of my abdomen. This damage frequently leads to a host of other issues such as bowel and bladder problems and infertility.

I left the hospital that day feeling like a new woman. And in a way, I was. My doctor started me on Depo Lupron injections which are a chemotherapy drug used to treat prostate cancer in men. In women, however, it interrupts the body’s hormone production thrusting it into a medically-induced menopause. I was a 20-year-old woman, and I was officially in menopause, complete with hot flashes, deep muscle pain, and brain fog. My doctor said that if I ever wanted the chance of possibly conceiving a child, I needed to start working towards it as soon as possible. But I was about to graduate college with a $100K student loan debt, and the one man I wanted to be with was halfway across the country. Y’all know having a child was the LAST thing on my mind at that time. After a year, I decided to stop with the injections because the side effects were too unbearable, so instead my doctor started me on normal oral contraceptives with a “take the 3 active weeks, and skip the placebo week” regimen. It has been 10 years, and other than occasional spot bleeding, I have still not had a period, and I still have no clue whether or not I’ll ever be able to bear children.

When I graduated, Rob and I dated again briefly, and all was right with the world. We would spend hours just driving around town and talking about life. He would share his desire to be a police officer but felt he would never pass the physical. We would visit his mom and his grandma and watch their faces light up as they doted on their Little Rob. I would book some low budget theater show and he would bring me flowers on opening night. He would end up back in the hospital, I’d bring him a burrito and then make him a tiramisu a week later.

But the reality of his chronic illness was much different from mine. Unfortunately, Sickle Cell doesn’t typically carry the highest life expectancy. And once again, he was so good at hiding his pain (physical AND mental), that I often forgot that. I would sometimes get frustrated with him for not setting big goals and being more ambitious, but in hindsight, when getting through each day is a victory in itself, why fret about the future? Rob was 3 days shy of his 25th birthday when Sickle Cell landed him in the hospital one last time. I’d gotten so use to the routine, that I didn’t expect the routine to ever end. But it did. Much sooner than I would have ever thought. But his spirit is no longer tethered to the broken body with which it had entered this world. And the love that he radiated each and every day that he was here, has only multiplied since then.

With only 24 years under his belt, Rob never got to complete college, never got to get married and have kids, had just begun a career in law enforcement. But none of that really matters because everyone that meant something to him knew how much he loved them. He traveled. He had fun. He helped people. And although I’m sure he could’ve added so much more to this world these past 6 years, he didn't necessarily need to. He lived the HECK out of those 24 years, honestly, humbly, and with constant integrity. As much as I, at 30-years-old, feel like I haven’t reached my goals yet, if I were to leave this Earth today, I know that I would’ve left it my best self, thanks to him.

It’s been six years since he passed, and I’ve been perpetually single since. I don’t know if my suppressed hormones have anything to do with it (I once met a guy on Match.com and he remarked that I seemed “asexual” #wtf), or if my fear of a man not understanding me as deeply as I’d been used to or not being cool with the possibility of an infertile wife has deterred me from even trying. But I found love through chronic illness once, and I wouldn’t trade it for the world.

Now excuse me while I go make some Tira Miso Soup.