I was hospitalized with a serious disease, but apparently, I had bigger problems.
(Names have been changed.)
Admitted to the Hospital: February 29, 2016
My neurologist was a man around my parents’ age named Dr. Miller. He might be a bit younger than my parents, but still a baby boomer.
I laid quietly in my hospital bed as nurses brought in what was needed for the spinal tap aka lumbar puncture. Dr. Miller was seated by the bed.
“Is it hard being single?” he asked. I felt my eyes widen in shock. How did he know I was single? Maybe my chart said I had never been married. I was silent as I thought about what to say.
“Sorry,” he said, after a pause. I was still thinking about how to respond. I finally said something about dating being easier in cities. That Iowa consists of families and college students, single adults being the minority. He agreed. In retrospect, I think he was probably inquiring as a father of single adult children. I’ve moved around a lot and have experienced various regional dating differences.
But… right before the spinal tap? And how did he know I was totally single? I’m not married, but I have too many ex-boyfriends, and hypothetically, I could have had a boyfriend at the time. And by time, I mean two minutes before having a lumbar puncture.
Before asking about the presumed difficulty of my single status, Dr. Miller had asked if I planned to write a book. I told him for the second time that I had two poetry collections published by two different presses. “No,” he said. “A real book. Like Harry Potter. Are you going to write a book like that?”
The first time I had said the word poetry to Dr. Miller, he flinched and blurted out, “I don’t know why anyone would read poetry.”
He did the spinal tap four times, saying my swayed back wouldn’t round enough even when I contracted. He explained how to round my back to me half a dozen times, even though I had told him earlier I was a professional modern dancer for six years when he was probing me about my life. The first time he said “round your back,” I told him my lower back was swayed. “You have a swayed back,” he said repeatedly as if I had never said anything.
Before the Hospital: February 8 to February 28
I knew when the spinal fluid test results were in, I would immediately be given the official diagnosis of Guillain-Barré syndrome.
I should have been admitted to the hospital much earlier than I was. By mid-February, I could only get upstairs by crawling. I had to hold onto something in order to walk. I had fallen down multiple times.
My own doctor had sent me away and told me to come back if things didn’t improve. She did rule out other possibilities first. I had an MRI which showed I didn’t have MS and a CT scan that showed I hadn’t had a stroke.
Weeks earlier an on-call doctor had told me I had a sinus infection. At that point, I could still move somewhat normally (I was stiff and achy), but I had already had tingling and numbness in my hands and feet for at least a week. “But my hands and feet are numb and tingling,” I said multiple times as she held to her diagnosis of “sinus infection.”
I went to the emergency room twice. One ER doctor told me it was “just anxiety.” I could barely walk. I told him about my autoimmune disorder (vitiligo) and history of autoimmune diseases (a former bout with Bell’s Palsy). He again told me it was anxiety.
“It has to be Guillain-Barré or Fibromyalgia,” I told my mom after researching online. “Or else I’m dying.”
The part of me that thought I would die without a diagnosis thought often of my brother’s friend, Hunter. He had grown up on our street and had died a few months earlier in a hiking accident. He had been living in the southwest and had been very committed to social justice and worked for the Innocence Project. I had thought of him often since his death that fall. I felt I should be more like him, devote more of myself to others. It was such a tragedy that he died at 26. The weeks following his death I kept making the same note to myself. How do you avenge a mountain? Hunter, who had so much left to contribute to the world, was gone. The idea of me dying young from an undiagnosed condition seemed logical to me. I remember struggling to walk and thinking, “If it’s my time to go, then it’s my time to go.”
Finally, another on call doctor said he suspected I had Guillain-Barré and finally, after three weeks of Guillain-Barré symptoms, I was admitted to the hospital.
In the hospital, I had to wear a bracelet with the words FALL RISK. I turned the bracelet so I just saw the word RISK. I like the word risk. There was a matching FALL RISK sign outside my room. Like the bracelet, it was bright yellow and larger than necessary, with a blocky black font. I fully understood that I was a fall risk, but couldn’t help feeling insulted. I’m a millennial. I was a professional dancer. Even when I could barely stand up, the sign felt slanderous.
I had to be attached to a heart monitor at all times due to my rapid heart rate which Guillain-Barré causes for some people. My lungs had to be tested multiple times a day, another possible complication. A fourth of all patients with the disease have serious issues with their lungs. I’m lucky I didn’t have to be hooked up to a ventilator. After over a decade of moving around by myself and living in different cities and states, here I was at the hospital I had been born in.
My second day in the hospital I had an EMG test also referred to as a nerve conduction study. It is worse than it sounds. After an hour of being shocked, I found out the Guillain-Barré was axonal, meaning the axons of the nerves are damaged, not the myelin which is more common. Rare the doctors said to me without attempting to soften their voices. They said severe case, and to me, the way they said severe made it sound like I did something that broke the law. If someone would have handcuffed me, I wouldn’t have been shocked.
Guillain-Barré develops when someone has a bad virus but otherwise has fairly mysterious origins. Only one in one hundred thousand get the disease (perhaps that number will rise slightly with the Zika virus) and it is more common in men and older people. Anyone can get it though and even after significant recovery, I still get choked up thinking about children with Guillain-Barré. There is a five percent fatality rate. When you have the disease it is hard to hear five percent. All that registers is fatality rate, fatality rate, fatality rate. When you have it, it’s easy to imagine yourself dying from it. The dilapidation is real and rapid, and it’s hard to believe your body will be able to recover at all. Most people do make a full recovery, but it can take months, years… Some are left with some of the symptoms and/or pain, some relapse, and others develop the chronic form of the disease, CIDP. Many suffer from chronic fatigue long term. Some suffer from depression and anxiety, some experience PTSD.
What bacterial or viral infection did I have that led to this? There is more than one possibility. Perhaps even being sick multiple times created some monster virus, I don’t know.
In late January, I threw up in a date’s car. A few hours later, I felt better, but I hadn’t had that much to drink. It was violent projectile vomiting and it was a first date. I should have been horrified. But, the truth is, I’ve gone on so many bad dates that I felt relieved. Relieved that for once I was the bad date. I felt another kind of positive emotion. Pride?
I’ve been dating for seventeen years. I feel that I should get something for this. A prize or present to acknowledge my effort. Even something I don’t want, but could sell for cash, like a jet ski.
After the violent throwing up episode (I mean, date) I was in Minneapolis, and then Madison, Wisconsin for about a week and a half total. I felt OK but had low energy.
Then I went to Ohio to do some guest teaching at a college and give a reading. I felt as if I was losing my voice, but no one seemed to notice.
My health deteriorated as soon as I got back to Iowa from Ohio.
I was supposed to go to New York and give two readings while I was in the hospital. I was shocked that I couldn’t leave to do the poetry readings. I shouldn’t have been shocked. I needed almost constant supervision. Still I couldn’t wrap my head around it. It was my first time in my entire life I was missing a performance or reading. When I was in a dance company, I performed a series of shows on codeine and muscle relaxants. When I wasn’t on stage I was wearing a neck brace. I’m not saying that this was a good idea, but to me, it seemed totally normal. The New York readings were scheduled on a Thursday and a Friday. Up until that very Thursday, I kept asking everyone “Do you think I’ll be able to go to New York?” I had already told the curators of both reading series I was in the hospital, but I didn’t quite believe it even as it was happening.
Scent of Another Woman (or Man)
I had five days of IVIG treatment in the hospital which basically means I was hooked up to an IV with plasma for hours at a time. My blood pressure was taken every fifteen minutes during the first hour of each treatment. The blood pressure cuff would become painfully tight. Had my right arm grown to a giant size too large for the cuff? Was I Alice in Wonderland? Was I really being hospitalized?
I smell like a stranger to myself. Actually, to be more specific, a collection of strangers. The IVIG treatments and lingering effects have made my own natural scent disappear or at least temporarily hide out. When I sweat I smell like someone else’s B.O. Even when I’m cold and my skin is overly dry, a scent is seeping out that is completely human, but not at all my own. The first three weeks I am out of the hospital I continue to smell like other people. A different person every day.
The physical therapist had me walk around the hallway. First, I had to put on a second gown to cover my backside. Then she secured a large black belt around my waist. Before each walk started she would grab a hold of the belt at the small of my back which she continued to hold onto until the walk around the floor was finished. I felt like a circus bear being transported from the truck to the tent. I don’t know if this is how circus bears are actually transported, but I can totally imagine it. My steps were awkward and birdlike.
When I knew what stretches to do, the physical therapist asked if I do yoga. “Sometimes…” I responded. I couldn’t bring myself to say that I used to be a dancer, a dance teacher, a Pilates instructor…
A second physical therapist started to work with me. When I did more reps than she asked for, she asked if I was in sports growing up. “Umm, no… Dance…” I said shyly.
When I am released from the hospital is based on how far I can walk, even if the walk and body itself are still in bad shape. I know I was released much earlier than expected because of the IVIG treatments and years of dance. I could control my damaged body with the small bit of strength I was regaining. I could compensate for the weaker areas of my body with the areas that were recovering slightly faster. I don’t mean to sound arrogant saying this. It was the only tiny advantage I physically had.
Super Tuesday and Other Primaries
As much as the doctors stressed me out, the nurses and patient techs were a calming presence, always trying to be cheerful and helpful. (I don’t deny that my doctors were/are brilliant. IVIG was the right treatment for me.)
I had to have a shot in my stomach every night to prevent blood clots and I could see the dread and pity in the nurses’ eyes before giving me the shot.
One nurse accidently stuck one of my multiple IVs directly through a vein. Even though it was painful, she was too sweet to hate.
A young male patient tech would dash in every time I pressed the call button. He worked in the middle of the night and he at least appeared to enjoy working at that time. I wasn’t allowed to walk from the bed to the bathroom without someone watching me. The bathroom was only about six feet away from the bed. The first few days I protested, “I’m okay on my own,” but every time I was shut down and told I needed to call for someone. All the patient techs and nurses would watch me walk to the bathroom and then close the door behind me. The young male patient tech would always close the bathroom door without it latching all the way. I was mortified. I felt too young for all of this. After reading more on Guillain-Barré, I discovered I was lucky I could tend to myself in the bathroom with my barely, but partially, working hands.
One late afternoon when I was lying in bed, a nurse turned to my mom and said, “She’s so pretty.” It was the way someone talks to the parent of a child. I guess for all intents and purposes at that moment I was.
In the hospital, I got into the habit of watching MSNBC because what else is there to watch during the day? There was a commercial where a young man and a young woman ran up porch steps. I wondered if I would be able to do that again. I wondered every time I saw the commercial. There was also a commercial about addiction specialists featuring drug addicts’ confessions. I remember thinking I would prefer an addiction to Guillain-Barré. I remember feeling actual contempt for addicts, even jealousy.
The three previous semesters I had taught at a local university as an adjunct. An adjunct’s lifestyle is like being a used tissue dropped on the ground and then kicked at by a dirty shoe. One day a patient tech asked me if I wanted players from the college football team to visit me. I said no.
“Some of them might be her former students,” said my mom, who had popped in for one of her frequent visits. I wanted to tell the patient tech about the long days of conferences I would have with composition students. Many of them would not bring their drafts to the conference for feedback which was the whole reason there were conferences. Before each long conference day, I would listen to the Nicki Minaj song “I Am Your Leader” which includes the lyrics “I am your leader. Yes, I am your leader. You’re not a believer? Suck a big dick.” I wanted to tell the patient tech about that too, but I just smiled and said “I don’t need anything. Thanks!”
I was finally allowed to take a shower when I could be approved to be off my heart monitor for a few minutes, but I hadn’t fully thought it through. I hadn’t thought about how I would have to be naked in front of strangers and (even behind a closed shower curtain) monitored. When I dropped shampoo on the floor, I couldn’t pick it up. Someone had to hold my underwear for me to step into when I was dry. A month later when I could close my eyes in the shower at home without holding onto anything for balance, I savored the moment, just standing with my eyes closed under the shower stream. Just hanging out.
Before being discharged, the king of neurology, Dr. Bates came to see me. Dr. Bates is past retirement age and has been at the hospital the longest. Sometimes he writes for the local paper. “I love your column,” my mom said while sitting on the couch next to my bed.
“Are you married or single?” asked Dr. Bates. I said single and then he scowled.
“I’m going to go to my parents’ house and my mom is going to take family medical leave for a while,” I explained quickly as if I was the last single person born in the 80’s in all of North America. His facial expression suggested he found my recovery plan and life choices only mildly acceptable. I did some of the strength tests I had done with the other doctors. He cheerfully congratulated me on my progress and left. Later a nurse brought me my discharge papers and I was finally free of the heart monitor and IVs.
At My Parents’
Out of the hospital, I was still struggling physically, with movement, strength, and pain. I was on several medications. The pain made me emotional.
Even if I had been living further away from family I would have had to drop everything to come and stay with them because I wasn’t ready to be totally on my own again yet and wouldn’t have had the money to hire an in-home caregiver/helper-person. I’m lucky my mom could and would take family medical leave for me. While everyone seemed in a huff about my single status, I felt grateful for family and enough of a recovery so far to get me out of the hospital. My friends and extended family were wonderfully supportive too. Single does not mean neglected. There are various kinds of love. I wanted some citizens of Ancient Greece to time travel to speak on my behalf.
I was still stumbling around a bit the first few days out of the hospital so my mom insisted I sleep in my parents’ room since it’s close to a bathroom. My parents slept in my brother’s old room. I felt ridiculous, but was still having bad headaches and body pain, and the bed was really comfortable so…
I thought of Regina George in Mean Girls making her parents trade bedrooms with her because it’s the bigger room. My dad wanted to know when he’d get his bedroom back. My mom said not for a while. I thought of Amy Poehler as the enabling mother in Mean Girls, excitingly taking pictures of Regina in her skimpy bunny costume, and I thought about the father with his disapproving and baffled expression.
Staying with my parents did not revert me into a childlike role, but the PTSD I was experiencing did. At one point I texted my mom, I feel like Peeta in The Hunger Games when he’s recovering from being brainwashed and has to ask what is real and not real. I’m in pain and anxious, but I’m okay and I have to find out if I’m actually okay. My mom (like Katniss) reassured me that my progress so far had really happened and that I would make even more progress.
A month-and-a-half later, I saw the text again on my phone and laughed. A moment later I felt nauseous when I realized that I wrote the text just two days before I gave a reading and did a Q & A at a college thirty minutes away. The reading went well and I was determined to do it after missing the readings in New York, but I didn’t realize how fragile I still was physically and emotionally. A person not physically appearing sick or stressed is not an indicator of wellness.
Growing up, I was never very interested in superheroes and superhero origin stories. I was a girly teenager and an artsy girl, usually lost in my own thoughts.
After having IVIG, I started thinking more about superheroes. I thought receiving IVIG for Guillain-Barré would make a good superhero origin story. After all, in real life, the treatment gave me strength, and I could literally tell through smell that what was going into me was human, but not my own. It didn’t seem like a stretch that the IVIG could have accidently been mixed with something else, leading to a superwoman of sorts. I started listening to the Bionic Woman theme song.
My regular physician was not happy that my heart rate was still up. My heart rate had always been consistently average before the Guillain-Barré and she felt something needed to be done about it.
I went to the cardiologist. I was the only non-elderly person in the waiting room. I had an ultrasound on my heart, walked on a treadmill, then had another ultrasound. (Eventually I could run again, but still wasn’t there yet that day.) My heart was functioning fine, but the heart rate was too fast. I was put on a heart medication. There is a fifty-fifty chance that someday I can go off of it. I can never get a flu shot again. The Guillain-Barré “souvenirs” were adding up. Soon I would be feeling a bit better and would then discover the chronic fatigue.
The nurses at cardiology were very nice. As one smoothed gel onto me as I was lying on my side, I started thinking about Patty Duke. I thought about her in Valley of the Dolls, fighting to get out of the straight-jacket-bathtub thing by poking at a hole in the fabric with her toe. I saw this so clearly and wondered about Patty Duke and her life.
As soon as I got home, I saw on the news that Patty Duke had died that morning. I felt sad, but not at all shocked. I recognize this as a coincidence, but I also like to think that my superpowers were starting to kick in, even if the superpower was only mild intuition. I thought to myself, half-jokingly, that the rest of my powers would kick in eventually. I was still in the discovery period.
Attack of the Texting Sister
I don’t know what triggered the first panic attack while recovering. I kept thinking to myself, “You’re okay. You’re safe. You’re okay. You’re safe…” and pretty soon I was okay.
The second one was brought on by reading about the Elizabethkingia virus all over the news.
News of this illness (it could have been any illness that day) made me start panicking and my anxiety settled on pregnancy.
Since I’ve had Guillain-Barré syndrome, if I ever get pregnant, it would automatically be classified as a high-risk pregnancy. Sometimes women develop Guillain-Barré or Bell’s Palsy when pregnant when they’ve never had either before. Sometimes women who have never had GBS before developing Guillain-Barré after giving birth. These are healthy women. Pregnancies or giving birth can trigger relapses for women who have had GBS or have the chronic version, CIDP, and can trigger a relapse of Bell’s Palsy. And who knows what else could happen to someone with a high-risk pregnancy.
During this panic attack, I texted both my brother and sister-in-law, who are already expecting their first child, that I want them to have “lots of babies. At least three.” I explained the situation. I explained that on top of it all, “I don’t know if I would ever have a supportive enough partner” to have children with, as a regular woman and especially as a woman with health issues. I texted that I “don’t want to miss out on some life experiences so I want to be a busy aunt.”
They both responded to my texts speedily, reassuring me that everything will work out.
Later that day, I wonder what’s happened to me. My anxiety has made me crazy. I’m telling my sister-in-law what to do with her body as if I’m a Republican senator.
Hot Sick Girl
I had a new physical therapist for outpatient physical therapy. The first question he asked me was “Are you married?”
“No,” I said, not elaborating on my answer and letting an awkward silence grow. I was getting really crabby that this was everyone’s first question for me.
Having a husband wouldn’t heal my GBS any faster. It would be great to have a supportive partner, but I refused (and still refuse) to worry about being single during such an urgent situation and the recovery process.
I understand this physical therapist (who turned out to be great) had to ask me questions about my home life, but why not start with a question about whether or not I had stairs at home?
One of my first nights out of the hospital, an ex-boyfriend contacted me on social media. He said he was glad I was out of the hospital (that was all he said about my current situation) and then went on to tell me he would be in the area the following night. I knew what that meant. I didn’t respond. Who tries to hook-up with someone right after they are discharged from the hospital and are still ill? Up until a few years ago, I sometimes gave into the ridiculous social pressure to look and act sexy as often as possible. This social pressure seems to be exclusively for girls and women and applies even when you are seriously ill. If you can’t be healthy and sexy then be a hot sick girl, the world tells us. By ignoring my ex, I firmly said no to the pressure. (And of course, said no to this asshole ex-boyfriend.) It’s all about healing for me. But I still felt society’s pressure to be sexy again ASAP.
All the medical sources I read suggested therapy for GBS patients and survivors. None of the doctors suggested this to me. I found a therapist and immediately felt I was doing the right thing. There is no way to have this illness and not be stressed out and emotional.
My regular doctor wants me to get off of Lorazepam. That’s going to be hard. Doctors put people on anti-anxiety drugs, but then want them to stop taking them. I’ve settled into a routine dealing with my anxiety. Now I’m going to have to change it.
I was right. I’m even more anemic now because of all the blood they took in the hospital plus blood tests after being discharged. The specialist said so. Was only slightly anemic when admitted to hospital.
Have been able to walk up stairs at a regular speed without holding onto a railing for a couple weeks. Still on various medications. Still several doctors appointments every week. Can do 20 minutes on exercise bike and short walks. The hospital hasn’t asked for payment yet. The clinic business office constantly hounds me to pay more than my monthly payment plan.
45-minute workout on exercise bike.
I’m so tired of people acting like you should hate yourself if you’re not in the New Yorker. What are you supposed to do? Hold a gun to Paul Muldoon’s head? You should accept yourself as a poet not in the New Yorker. I had to accept myself as a young woman going to the bathroom with an IV pole.
Two months and a day after being diagnosed, my feet still hurt off and on.
Worked out for an hour today. (Exercise bike.) Able to walk outside longer.
Last physical therapy appointment.
Can do a lunge, but uncomfortable in Pigeon.
Work out for 90 minutes. (Exercise bike.)
Orlando shooting. Continuing cycle of watching and reading the news and crying.
Still hurts to crouch down. Still need lots of sleep.
I wish I could conclude this essay by reporting that everything is now amazing for me. In truth, Guillain-Barré has made a mess of my life, but, I’m grateful I’m almost healthy enough to put it back together.