Chronic Illness — Persistent Burden. Persistent Guru.
On June 29, 2015 I got nauseous. I’ve been nauseous every day since.
This incessant nausea has been with me for almost two years. Had I a dollar for every joke someone made about me having morning sickness due to pregnancy, I’d be a billionaire. The times I’ve had to pull my car over to vomit are countless, as are the times I’ve had to suddenly stop what I was doing hoping to make it to the bathroom before the vomit came. Occasionally, I’m not fast enough and end up emptying my stomach all over my car or projectile all over the room.
Cleaning up the contents of my stomach is a skill I have perfected — a skill I had no idea I’d need so often. This particular type of vomiting process is abnormal in that it is insatiable. It doesn’t stop with just throwing up what’s in my stomach. No. It wants whatever is deep inside of me. It wants to turn me inside out. Food. Water. Bile. Heaves. Pain. It goes and it goes some more. I drink water or whatever liquid I can find quickly so I have something to throw up — it’s less painful that way. Somedays this will happen 15–20 times. It’s unpredictable, painful, debilitating, and depressing.
Thankfully, the vomiting is infrequent. But the nausea is my constant companion. Some days it’s extreme and accompanied by that incessant, painful, voracious vomiting. Occasionally the nausea is so intense that I begin to sweat. I get weak. I get dizzy. I don’t want to talk. I can’t talk. I just have to move through it. I have to lie down and breathe to pacify my stomach so the vomiting spasms don’t come.
I also have “normal” days. These days are a blessing because I can live my life like a typical human being. I’m still nauseated at some point in the day. Sometimes it’s just a slight, persistent nausea through the whole day, but it’s not debilitating. It’s the kind of discomfort I can live with and still function. Thankfully, for the last 3 months these days with only some nausea are the most frequent. I like these days. It will switch again though to where the bad happen more often. It’s a cycle, hence the name of the disease.
Initially my doctor thought I had a parasite. That was the first thing that came to my mind as well. I’ve seen the show Monsters Inside Me and know that this is how those bugs operate. It wasn’t parasites. Perhaps I am allergic gluten? Maybe it’s my gallbladder? Possibly it’s triggered by something I’m eating? Tests, tests, blood, MRIs, ultrasounds, and food logs. Each time to revealed everything was normal. I’m very happy to hear that I don’t have parasites, my gallbladder is fine, I don’t have celiac disease — however there’s something within me that isn’t normal. I began to fear that doctors would think that I was making this illness up. That I was trying to get attention. Being crazy. A hypochondriac. I knew my nausea was real. And I knew it was taking a toll on my life with countless cancelled plans and sick days.
I tried acupuncture. Chinese medicine. Naturopathy. None of them could figure out what was wrong or help me. Finally a gastroenterologist said I had Cyclic Vomiting Syndrome. My inner monologue assessed his diagnosis with: “He’s totally making this up right now. He’s at his wits end and can’t come up with a real diagnosis, so he’s making this up so I’ll go away. Cyclic Vomiting Syndrome isn’t a thing. People don’t have that.”
Well. I did some research and learned that Cyclic Vomiting Syndrome actually IS a thing. It’s a disease neurologically related to migraines. It’s a mysterious and rare disease and not a lot of medical or scientific investigation have been put in to it. It’s also one of those things that aren’t curable. At least the symptoms can be treated. Sometimes kids will grow out of it. Sometimes they won’t.
I wasn’t going to give up, however. I asked my regular MD if I could get a second opinion from a research hospital. I was tired of messing around. I wanted to consult the big guns and see what was wrong with me, because it wasn’t Cyclic Vomiting Syndrome. That’s a stupid name for a disease that doesn’t even exist. Silly allopathic doctors!
I went to the Mayo Clinic. I knew that these extra fancy doctors would fix me right up and I could go back to a life without nausea and vomiting. I was exceedingly impressed with the Mayo Clinic. They were so courteous, helpful, professional, and kind. I spent two hours with my gastroenterologist. The man had gone through my medical file with a fine-toothed comb. He was patient and intelligent. However, he said that he knew that I was coming to see them in the hopes of them finding out I had something other than CVS, something that can be “fixed”. Alas, the consensus between he and the senior doctors was yes, I did indeed have Cyclic Vomiting Syndrome.
This left me somewhat disheartened. I was hopeful for a cure. I was hopeful they could make the nausea and the vomiting stop. But, no, that’s not possible. I have to live with this situation. As the Buddha invited the demon Mara in to his house to have tea, I must invite this disease in to my house. We are going to be together for perhaps my whole life. I must make my way through the world with it.
As burdensome, depressing, and annoying as it has been, CVS has also been one of the greatest spiritual teachers I have ever had. I have learned acceptance. I have acknowledged that this is how my life is now, and, unless I want to be miserable and fight a losing battle, I must accept it.
I have also learned patience. I must be patient with myself and with my body. Sometimes I have to cancel plans. Both important and unimportant plans. The disease doesn’t care what they are. But it’s here and I must be with it now. The plans can either wait or go on without me.
In many ways, CVS has given me a lot of freedom. It has made room for and called me to fully put in to practice the spiritual teaching of Buddhism, Yoga, and Advaita Vedanta that I have been studying most of my life. It has given me new respect for the body, and a much greater appreciation for good health.
When the nausea is here in this body, it is firmly here. So am I. Unfortunately, that means I have to miss other experiences I wanted to have, but that’s okay. I’ll stay home and have tea with my demon, my guru, my teacher, my disease. In the end, everything will still be okay.