This begins my story and my hard look at America’s health care. Why I write this is in the preface and at the end of this chapter. It is not just my story. There are other voices that will be heard. We can do policy paper after policy paper as we have since at least 1929-1932. Without our voices nothing will happen. We need to be heard, not silenced by the system’s constraints or the rules of the game. After all, it is our lives and the lives of those we love.
Chapters will be published episodically. Please read on to follow the journey.
Chapter One: I Have No Business Being Alive–My Stroke
I was on the floor almost three days before I was found. My whole body was purple, green and blue. My eyes were closed and swollen like an exotic fish. But I was severely dehydrated. My left side was immobile. It was not clear if I was breathing. If I did not have close friends I would be dead. I was not expected to live.
I remember only scraps of what happened to me. I knew I had been sick with intestinal problems. I knew I had asked friends to pick up some Pepto Bismol and Alka Seltzer. I live in a large condominium complex. I knew someone would be going to a store. It would not be an inconvenience. Luckily when I returned home in March the bag with the medicines was still intact. The receipt was dated Sunday, January 19th at 9:36 AM. I was taken to Harborview on Tuesday, January 21st probably around 10 or 11 in the morning.
I had not been returning phone calls and e-mails which is unlike me. My friend Karen called a mutual friend who is a realtor and she knew how to reach the condo manager. The manager found the door unlocked. She did not want to go in. She called another resident who said call 911. She did but the EMT’s were out on another call. They told her to call the police. She did. The police asked if I was breathing or if there was an odor.
The EMT unit soon returned and rushed over. They put me on a stretcher but it was too wide for the elevator. Instead they wrapped me into towels, sheets, or whatever was handy and took me down two flights of stairs “like a sack of potatoes” as the manager said. When they found me I was apparently having seizures. I was intubated on the way to Harborview. I had seizures for three days in the hospital.
I was moved from the ER to ICU to Neurology. I moved from a shared room to a private room or vice versa. I finally went to Rehabilitation on January 29th. I have no memories of those eight days before Rehab.
I do, however, remember telling what must have been the ER staff: “You can’t keep me in this hospital overnight without my permission. That’s illegal. I know. I’m a health care professional.” I joked with friends later that at that point they must have either drugged me or restrained me or both. When I read the hospital’s records later at home, I read they actually had restrained me. A friend who was there also confirmed this. I had no idea he was there.
The same day? They put electrodes on my face and connected them with some sort of goop that stuck in my hair. “I want my comb.” I was told I did not have one. “I have one. It’s in my purse.” I was told I did not have a purse I came by ambulance. “No I didn’t. I would have remembered that—six cute guys; siren; red flashing light. I would have remembered that.” But, I was taken by ambulance with a siren and a red flashing light. I still don’t remember that.
What I Remember
I can read Harborview’s notes about what happened and hear stories from my friends who visited. I remember virtually nothing of that first week. I know people came by, but I am not sure who or when. After I reached Rehab, people kept telling me I would not stop talking about a garage sale.
I was very dehydrated when I was found and dehydration comes with hallucinations. My ‘garage’ sale was in my hall closet. People kept coming in to buy things. It was close quarters. Items people wanted were behind the mirrored closet sliding doors. Somehow a Russian mafia hit man made it in. He was disguised as a Japanese sumo wrestler but was too small. I knew he was a hit man who cared less about my life than swatting a gnat. He could dispense with me without a wink of conscience. He hung out at far end of the closet where I keep my shoes in a hanging rack, far from my front door and far from help.
I knew he wanted to kill me. I kept telling myself: “get away from him.” He would not blink an eye if I died.
I know friends came while I was in intensive care. But only because they told me. I don’t remember the rooms I was in. I was told I had a private one. I have glimpses of that room because some people visited me there. But I cannot remember if that was before or after the room I shared with another couple. My memory of them, however, is seared into my brain.
The couple was there because she fell from a ladder and landed on her head. She was rushed to Harborview by a Medivac helicopter. She and her husband lived about a two hour drive from Seattle. Her husband tried to ride with her but the Medivac crew said he was too heavy. He took their dog to a neighbor and drove to Harborview. The entire time they were there he slept in a recliner next to her. He kept telling her “You are my life. My everything.” I don’t remember how many nights we shared the room or if it was only one.
Once I heard a man scream and scream. It was night. I was scared. Harborview is a public county hospital that takes all patients. The loud speaker called Code Grey, a code I did not know. I later learned it is for help with a patient who is a security risk.
And then, my bed. It had guardrails on both sides by the head and shoulders and by the hips and the legs. I was told briefly if I moved the guardrails that an alarm would sound. The guardrails were to keep me from falling or moving by myself. If I needed to use the bathroom I had to ring a nurse. I also had a phone.
I was told not to bend my left arm with the IV because it would set off an alarm. I remember bending it and hearing the alarm.
Later (where?) there was suddenly a loud dial tone. I thought I had accidentally dropped my phone. I searched and searched because I did not want to disturb the nice couple. I couldn’t find it. I grabbed the guardrail. The bed started moving. No one came to stop the alarm. I couldn’t find the phone.
The dial tone ended. The bed stopped moving. A nurse came and told me grabbing the guardrails caused the mattress to move. I don’t remember if they had told me before or not. I remained afraid of their beds my whole stay.
Months later a therapist asked me if the bed incident could have been a hallucination. It is possible given my vivid memory of the fictitious garage sale. When I returned home the closet was a mess. A bamboo pole the Japanese use to heat tea and hangs from the ceiling was leaning by the window instead of being in the closet’s back corner.
Later I learned the EMT’s had returned and straightened my furniture. Another neighbor had cleaned and vacuumed the house. She and other friends took the produce from my refrigerator so it would not rot and smell. When I returned all was back in place. The hit man was gone.
The brain can be a capricious critter sometimes but it is not static. It can heal. Much depends on where the stroke is and the type of stroke. I could recover in large part because I had a very rare stroke—a cerebral sinus venous thrombosis which has an 80 to 90% recovery rate. People seeing me six months later would never think I had had a stroke because I had no visible impairment of speech or movement.
As I emerged from my fog, I felt like a passenger suddenly tossed into a life boat with other passengers. I did not know if I could row, or how to row. I didn’t know the other passengers, what they could do or if they were friend or foe. I didn’t even know what skills I needed to survive life in a vast open sea. I felt lost and adrift.
I did not really start to heal until I went to Rehab. They made me exercise my brain to regain my mind and my body.
The hard reality is I have Medicare, Medicare supplemental insurance, knowledge of the health care system and the good fortune to have a vibrant network of supportive and generous friends and colleagues who wrapped themselves around me and took care of so much of my life.
Too many people don’t have such gifts. Which is why I write.
Kathleen O’Connor © June 2, 2014/August 2014