In 2011 I lost my mind. After I had Samara, I remember sitting in a hospital bed hysterically crying. When she would cry, I would cry. It hurt to nurse her. Every time I placed her on my breast to nurse I felt my uterus contracting and I yelped in pain like a puppy that had its paw stepped on.
I told my brother in the hospital when he visited “I don’t know how I’m going to do this. I’m scared.”
“Don’t worry,” he assured me, “mom and dad will help you if you need them to.” His words reassured me, but I was still scared. I was afraid to be a mother of two. I’d had Ari for almost three years and he was my one and only. I doted on him, I read to him, we painted colorful watercolor works of art together and we went out to eat muffins and juice frequently.
But now things were going to change. I had a new little person to take care of and add to our family. I had a little girl. She was beautiful and squishy and pink and I loved her immediately. However, I had no idea how I could love two human beings equally.
So I tried to be the best mother I could be. I did not stop. I went to the library with an infant and a three year old, I went to the playground with an infant and a three year-old, I went everywhere with an infant and a three-year-old.
One day, when my friend Lisa came to visit, I randomly touched my face and felt a hard bump on my cheek. I couldn’t figure out what the bump could be. I obsessively touched it. I couldn’t leave this strange bump alone. The next day, I looked in the mirror and the bump was red and swollen. I went to the hospital emergency room with my soul sister and friend Donna. An overworked and annoyed resident diagnosed by bump as folliculitis and sent me home with antibiotics.
The very next day, my bump was so large and red that I couldn’t open my right eye. I went back to the hospital and demanded they admit me. They listened. I was started on a course of IV antibiotics and the doctors told me that they would have to drain the mass on my face. I was so scared.
A doctor performed the drainage procedure at bedside and then continued me on IV antibiotics. I was told I had to stay in the hospital. An attending physician came in and gave me some other infuriating news.
“I would recommend that you stop breast feeding.” Said the doctor “The antibiotic we want to give you is not safe while you are breastfeeding.”
“No.” I responded plainly “I want you to give me an antibiotic that is safe for nursing. There are plenty of them.”
He grumbled and conceded with my request. I also demanded that I speak to the lactation consultant. I asked the hospital for a breast pump so that I could continue to feed my four month old daughter. Samara was four months when I was hospitalized for a staph infection.
I missed her every day (of the five days) I was in that hospital. I had my friends and family coming to the hospital to do “milk runs” so my baby could continue to eat.
After what seemed eternity, I was released and returned home. But I had surgical packing in my wound on my face, so a visiting nurse had to come to my house every day to change the packing and tend to my wound.
After being on antibiotics for a prolonged period of time, my body began to have a strange reaction. My doctor changed medications while my wound was mending to expedite healing time.
One evening while I was laying in bed, I had an intense burning sensation in the back of my head. It was so pervasive that I couldn’t sleep. My heart began to race with fear. I couldn’t fall asleep and I knew something was wrong with my body.
After a sleepless night I called my doctor. “Stop taking the medication immediately.” He said definitively. He put me back on the previous antibiotic I was taking. Unfortunately, the burning sensation in the back of my head persisted and I called my doctor back to ask what I should do.
“That’s not normal.” Said my doctor. “You should see a neurologist. At the sound of the word “neurologist” I had trouble breathing. I started to have a panic attack. He seemed to be saying that something was wrong with my brain.
“What do you think it is?” I asked him.
“Hard to say,” he replied. “But you should get evaluated.”
“What could it be?” I persisted.
“Could be Lupus, could be Lyme disease.” He said flippantly.
Now I was really panicked. I was convinced that I was dying. I called my brother on the phone.
“Jonathan, the doctor said that I might have Lupus or Lyme Disease!” I said unable to control my breath.
“Sarah, I can’t believe a doctor would say such a stupid thing. I’m sure you don’t have either of those things.”
“He wants me to see a neurologist.”
“Don’t worry, I’ll find you a good one.” He said confidently.
My brother found me a neurologist affiliated with NYU hospital to see. I was so nervous to go through the myriad of tests to find out what could potentially be wrong with me and I was still convinced that I had days to live and probably had a brian tumor, Lupus or Lyme disease.
Because I still had the burning sensation in my head and continuous muscle spasms throughout my neck and back I had persistent insomnia. For two weeks of my life in 2011 I slept 1-3 hours per night and I could not figure out the cause.
I saw two neurologists, a man and a woman. The man was lovely and accommodating, he was the one my brother recommended. The woman was okay but condescending at times.
The neurologists suspected that the cause of my pain was probably musculoskeletal but said they would humor me by going through a battery of tests including a brain and cervical spine MRI.
I was still convinced that I was dying and they were going to miss whatever was causing my impending demise.
During the two weeks that I didn’t sleep, I hallucinated. I saw a floating face as I was in a hypnopompic state. I managed to fall asleep for 5-10 minutes and upon waking I saw (with my eyes closed) a man’s floating face. So now, not only was I dying but I was also going completely insane.
I called the neurologist in a panic. What was happening to me?
“Lack of sleep causes hallucinations.” Said the female neurologist. “Sarah, you have got to calm down. This is just anxiety.” She said.
I was infuriated. Just anxiety? It may have been “just anxiety” but this level of anxiety was causing me severe pain and now hallucinations. I was terrified.
I had disturbing intrusive thoughts during this period of time. I thought “if I don’t sleep soon I just want to die.” “I can’t live like this anymore.” But I had no medical professional to turn to for help because everyone thought I was crazy.
Also, I was still convinced that I was going to die, just in case you forgot that part.
Every time I called the neurologist to complain about symptoms the female neurologist would tell me that I was anxious and that I had to be patient while testing was taking place.
The brain and cervical spine MRI revealed nothing significant and confirmed that I wasn’t dying. There was a blip on the brain MRI that the female neurologist identified as “an incidental finding.” When I asked her what that meant she said:
“Oh, everyone’s brain is different and this is something that makes your brain unique from other people’s brains. We don’t know what it is, but we know it’s not dangerous. It’s not a tumor or anything.”
This did not reassure me. I was still convinced that my demise was imminent.
In the end, it was decided by Western medicine that my pain were a combination of mental and physical symptoms all leading back to anxiety and depression. So I made a very hard decision to go back on antidepressants. I had been off of them throughout pregnancy and nursing, but I decided that my sanity was worth more than any of this anguish.
In conjunction with taking antidepressants I went to intensive acupuncture and physical therapy to rehabilitate my neck and back for four months.
The thing that struck me about this year of my life was how I was treated by the medical profession as a person dealing with anxiety plus a mysterious medical condition. I was told repeatedly that I was nut case. I was told to stop calling the doctor. I was called crazy under all this subtext. I was discouraged for reaching out for help. This is not the way that patients with mental illness should be treated. We are humans. We are not defined by our diagnoses.
Please share my story if you believe that people with mental illness should be treated with respect when interacting with doctors.