When I left off last time around, I was in the midst of the longest winter, literally and figuratively, of my life. I truly identify this period of time as the Dark Night of the Soul. The pain and dis-integration of November led into the freezing ice-cold days and nights of December. I begged for my roommate to find me in the depths of my despair, hiding from myself and dropping statements of victimization, powerlessness, and despair. I was completely lost and wanted others to join me in the darkness.
Christmas Day I was on call for work, and I went to a home visit with a young girl dying of a brain tumor. New Year’s Eve, I had a horrific session with my therapist, interrupted by a rude phone call with one of the pharmacists from the hospital. I got home and imploded emotionally, crying and sitting in the darkness of my house. I spent New Year’s Day in bed, barely functioning and barely eating. That evening, my roommate confronted me about my emotional health. She advised me to seek out more intensive therapy, find a way to take care of my physical self, and to figure out how to get out of bed in the morning. She informed me that I had to own my place and take over my story.
I saw absolutely no way to accomplish this, as I felt empty, useless, worthless, and unlovable. But I found a new therapist who I could schedule myself to see up to three times per week when needed. It was all I could do to get out of bed and make it to work on time in the frozen tundra of Minneapolis. I hated the winter more every day, because the sky was so dark and the world was so frozen. My heart felt the same.
I started to experience physical symptoms of illness, like nausea and lack of appetite. My heart raced at night, and I woke up in cold sweats after bad dreams. I ate crackers and drank ginger ale when I could force myself to eat. My therapist advised me to schedule an appointment with a psychiatrist, who changed up my anti-depressant medications and diagnosed me with anxiety. This was both a relief and a shame to me, as I so desperately wanted to sleep better but also wished I did not have to take medications to treat myself.
I underwent an endoscopy, convinced I had ulcers or severe reflux. To my disappointment, the endoscopy was clear. As I continued to work with my new (much different and better) therapist, different subjects would bring up physical reactions as I talked, and I would have to pause for a few minutes. I very slowly started to unpack the wounds which had reopened in the months before, wounds from my young childhood, from family relationships, from church, and from adolescence. I was deconstructing the scaffolding surrounding my heart, which was weak, chipped, and breaking. The parts of my history I thought I had conquered were suddenly back in the forefront of my being.
On a Sunday morning in the beginning of April, I woke up and was frozen in pain. The right side of my back was totally cramped, and I could not turn from one side to the other to get out of bed. I crawled to the bathroom, trying not to cry out, and slid myself on my hands to get down the stairs. I asked a colleague to drive me to urgent care, where I was prescribed an anti-inflammatory and a cold pack. After two days of trying to complete my tasks at work, I could not be on my feet at all and called out for an indeterminate amount of time. I saw a chiropractor and underwent a few manipulations, then at a volunteer meeting was in so much pain I could not stand. Late that night, I now had prescriptions for opioid medications from the emergency room and was scheduled for diagnostic procedures, which then confirmed a herniated disc in my lower back. I was disabled, could not exercise, and was a danger to the roads, driving on such strong pain medications.
It became clear to my roommate and myself that we could no longer inhabit the same house. My illness, my presence in the house all day every day, and the unraveling of my heart, soul, and body was too much to expect anyone to share. So in the middle of the incredible pain I was experiencing, I moved into a small duplex apartment and painted, decorated, and settled as much as I could.
I hated taking the strong pain medications in order to be somewhat functional. I still drove my car (I do not advise this!), went grocery shopping, and attended physical therapy appointments. I saw an acupuncturist, and for a few minutes each session, my pain was gone. My therapist and I dove into the origins of the back pain and the connection between mind and body as we moved through how much I carried and refused to let go.
I again began losing my appetite. I started sleeping in later and later and needed naps to get through the day. My doctor prescribed me iron, as my red blood cell levels were dropping. I could not keep up a good diet, and began to experience significant constipation. I also started needing to use the bathroom much more often, despite not drinking very much. I woke up in the middle of the night drenched in sweat, limping to the bathroom and changing my sheets. I noticed small red spots on my legs that looked like they could be a rash, but I attributed them to gardening.
I was scheduled for an appointment with a hematologist to delve into the reasons why my red blood cell counts were dropping so much. I had always had difficult periods, and had surgery previously, so I presumed that this was behind the changes. I went to dinner with my former roommate on a Monday night, and she commented on how pale I was, but I told her it was because I was inside so much that I wasn’t getting any sun. I could barely manage to take a few bites of the appetizers we shared and kept using the restroom, afraid I would vomit up the food.
After a therapy session, I picked up more food at a favorite Thai restaurant in hopes to eat more once I got home. I did, and I went to bed in anticipation of another doctor’s appointment the next day.
I woke up vomiting undigested food, everything I had eaten the day before. I lay in the fetal position on my bed and begged for a ride to the doctor, since I did not feel safe driving myself. No one was available, so I gathered every ounce of strength I had and purchased some 7Up on the way, to have some sugar in my body.
My doctor was shocked at how I looked. I could not raise my head from the exam table once I got into the room, and I was dizzy, barely able to describe my symptoms. She ran a blood test while calling the hematologist, and my red blood cell levels came back dangerously low, like blood transfusion needed low. She then advised me to go to the hospital, get a blood transfusion, and then go home for the night.
I drove myself to the hospital, and to this day I am not sure how I made it there. I parked in emergency parking and slowly shuffled to the admitting desk of the ED. I was brought back immediately, and many more lab tests were run. The results showed that there was much more going on than just low red blood cell counts. The medical team suspected a tumor on my kidneys and admitted me to the hospital for more tests in addition to two blood transfusions. I became more and more ill, numerous consultants were called and I was scheduled for a kidney biopsy the following week.
With all of my symptoms added up together, I was not a straightforward case. I was blindsided by all of this and could not believe the possibilities, because for so long I had attributed every physical symptom to an emotional cause. But this time it was real. I was on my back, powerless to determine what would happen the next minute, and experiencing the irony of being the patient, not the caregiver.
After a severely high fever, I was told that the next procedure would be an echocardiogram – a three-dimensional ultrasound of my heart. I also had numerous blood samples taken to check for infections in my bloodstream. I was stunned and panicked, not knowing what was going to happen next. As a nurse with a lot of experience in the cardiac field, I knew what an echo was looking for, and since I was born with a heart defect, I had undergone numerous previous ones to determine how my heart was functioning.
At this point I should mention that about 3 weeks prior to my hospitalization, I had a vision. I don’t often experience visions, but this was a very distinct and clear picture: my physical heart was being punctured and torn by numerous thorns in the middle of a jungle, and was tied down and trapped by vines. It was gasping and choking for air. I did not realize it at the time, as I was still working so hard in therapy to learn how the body and mind are connected, but it was powerful and jarring.
Two hours after the echo pictures of my heart were taken, the nephrologist walked into my room and gave me some news. I no longer needed a kidney biopsy, because my illness had been diagnosed. I had endocarditis, a bacterial infection which was attacking one of my heart valves. All of my other symptoms were being caused by the infection, and the infection had spread to my bloodstream and spread throughout my body.
I was stunned, shocked, and scared. I was weak, malnourished, and alone. I called my mom and asked her to come be with me, as I had no idea how long my hospitalization would be. I needed several weeks of IV antibiotics and likely heart surgery to repair, or replace, the bad valve. My body had had enough and could not continue to function under all of the wounding and pain and trauma of the past many years. What I could not do emotionally my body did physically, forcing me to rest.