Not In My Head (Part Four): The End Of My Story – Or Is It?

My speech capabilities began to improve. It would be a stretch to say I was articulate, but I was making sense most of the time and my wild relapses dwindled to mere confusion that I could think my way out of within minutes, with some effort. My son, Cameron, was helping me learn to write again while I was still in the hospital, which was fine because I was bored. My first effort at cursive was about 1/8″ high. He said, “Can you make it a little taller?” We laughed as I practiced. I had a book with me since the very beginning when Michele first drove me to the ER (because I always have a book with me), but I couldn’t concentrate enough to read. I opened it a few times and tried to read a few lines and would give up. A terrible thought entered my head when I wondered if I would ever be able to write fiction and poetry again. This scared me because I knew it was not assured.

I remember one very nice nurse at York and one who was apparently assigned to torture me. The latter got me out of bed my second day there and said we had to walk and she was taking me someplace I wasn’t supposed to go. Seriously, that’s what she said. I was not enthusiastic…I had no energy and all I wanted to do was sleep. We walked past the nurses’ station and, without thinking, I reached out and touched the counter as we passed. She said, “Why did you do that?” – like she was the Gestapo. I looked at her and said, “Do what?” I had no idea what she was talking about. She said, “Touch the counter. Why did you touch the counter? Do you always do that?” Now I’m wondering which one of us is the crazy person. I do have a habit of touching things. I didn’t know that was not allowed. Not to mention, duh, I had a fall-risk bracelet on my wrist.

She took me to a computer room (the off-limits to patients place) she had described so mysteriously. She knew I was a Realtor and wanted to “test” me to see if I would be able to “work” when I went home. She seemed to have no consideration for any recuperative period or physical therapy I might plan on having. Now, I couldn’t really write and could barely type. In fact, my first few days home I spent a good deal of time fixing typos on super short emails I needed to send. She forced me to go to realtor.com and do a property search for her. Well I had some difficulty. I explained to her that I use three different mls’s for all my work (much more intricate than what she wanted) and don’t use public sites like realtor.com. Not to mention they had recently revamped their site which tends to confuse a normal person with a properly functioning brain. She was not happy and asked me to do something simpler. I looked up the hours of the nearest Perkins Restaurant and that finally satisfied her. I don’t remember the trip back to my room, but I’m pretty sure I didn’t touch anything.

I was unaware until weeks later that there were some heated discussions about sending me home. Jess overheard the nurses talking about a terrible bed shortage they were then experiencing. I wanted to go home, and Cameron always wants what I want. Jess always wants what she deems best. Cameron and the doctor won and I was released Wednesday night. Jess was worried although I didn’t know it at the time. They were releasing me although they had no idea why a UTI infection had affected me so severely and didn’t know if there was anything else significant going on. While waiting for the car, I felt sick and had my own reservations about leaving the hospital. I couldn’t tell Jess or Cameron since I had pleaded to be let go. So, it seems everyone was in the dark.

Home again, I felt a little better…because home has that effect on people. Looking back, Jess was right and I feel I was released too soon. Thankfully nothing horrific happened. They remained with me, taking shifts, and nursed me back to some semblance of myself. I did sleep a lot and it took weeks before I could go without a daily nap. Encephalopathy does make a person exhausted, but I was lucky to recover. Some people don’t. There was still a little bit of residual confusion for a few weeks. Three weeks after coming home I had to go to Johns Hopkins for a regular visit with my doctor there. Cameron drove me and Jess was meeting us. They called me from the waiting room to take my vitals after which I rejoined Cameron to wait again. I looked at him and said, because I was concerned, “Cameron, my temperature is much lower than usual. It’s 196 degrees.” He tilted his head and gave me a grave, questioning look (a clue). Supreme concentration crossed my face and I said, “No, that’s not right is it?” I said, “It was 96.1”, which, sighing with relief, he then believed.

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Subsequently I did a great deal of research on encephalopathy and encephalitis. There are many, many causes and the symptoms are quite odd. They can also be fleeting or extended like mine were. All of them should be considered serious enough to get to a doctor or, preferably, the ER asap. If you suddenly can’t speak, for instance, even if it is only for a minute, get to an ER. If someone becomes disoriented and/or is not making sense, get them to an ER. This can come on quite abruptly. It could also be a stroke, but you can usually rule that out (as my friends did in my kitchen) by asking them to stick out their tongue and then to smile. If they can’t do that…probably stroke. If they can, probably brain swelling from infection. In any case, this is serious.

I am still considering following up with a specialist, although my new family doctor is basically telling me I’m being ridiculous and I should let it go. I expect to have another doctor soon. I was trying to find a specialist online on my own and was frustrated by my search. I suddenly had a brilliant idea. I typed in Johns Hopkins and encephalopathy and, to my surprise, I learned that Johns Hopkins is the only hospital in the country that has an entire department dedicated to the study and treatment of encephalopathy and encephalitis. If I do get another opinion as to what happened to me, I will go there.

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Not In My Head (Part Three): ICU or the Psych Ward?

I don’t remember anything about my arrival at York Hospital but I must have been conscious because according to Jess they were not at all happy to see me and I kept trying to take my clothes off. What I remember is waking up hours later in a very odd triangular room that looked nothing like a hospital room. There were many people around me talking, none of whom I knew. I didn’t see my kids anywhere, but it seemed late and I guessed they must have driven back to Gettysburg. I touched my hair and it felt like cement which somewhat alarmed and confused me further. I wondered why it was like that for a few seconds and then I was out again.

In the morning Jess and Cameron returned. It was now Monday, seven days since I began my visit to the dark side. Cameron was his usual sweet self. Jess seemed a little put out with me. With hands on her hips she began, “You know, you can’t tell anyone your freaking name but you are able to describe your doctor in great detail.”

I had no idea what she was talking about. I didn’t remember even seeing a doctor, yet this came out of my mouth, “Yes, he was tall with dark skin. I think he was Indian and he had nice teeth.” I thought what the hell am I talking about?

But Jess answered, “Yes, that would be him…and another thing, I really didn’t appreciate you calling me last night at 2:30 am to tell me they had tied you to your bed.”

I had no recollection of calling her and briefly wondered how I had managed that, but again, words flowed with no provocation from me. I said, “Well, they did.”

She swore to me, “They absolutely did not tie you to your bed.”

We argued about this for a time and she tried to convince me it was those crazy leg things they put on you that are connected to a machine for the purpose of pumping up and preventing blood clots. I realized much, much later than she had to be correct as they are no longer permitted to tie down patients. They use bed alarms. As in Gettysburg, they had my bed alarm on. Basically, if you stick your big toe over the edge of the bed, the silent alarm goes off and nurses come running to see what you are trying to do and either help you or stick all your toes back where they belong. I kept them busy.

The kids told me a nurse had given me a bath upon my arrival in York…and washed my hair, which explained the concrete feeling. Apparently rinsing was beyond the call of duty. I really had needed

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Not In My Head (Part Two): The Doctor Arrives

Michele and I were ushered into an ER room where nurses went through their preliminary routine and then we waited. My kids arrived and shortly thereafter the doctor. I had never seen him before, but I liked him immediately. He was older, slightly padded and quite jovial looking. He could have been Santa Claus. Without even examining me, he said, “This is not a stroke.” Well, we actually hadn’t thought so, but it’s always nice to have things confirmed for you. However, he immediately said, “This is probably a UTI.” We looked at him as if he had two heads, and he added, “urinary tract infection” and we continued to gape at him as if he was crazy. I was comatose for three days and now couldn’t speak. This seemed a bit more serious to me than a UTI. No, he assured us, he was fairly certain and tests then confirmed it. It is apparently common to go batshit out of your mind when you’re an older person and have an infection. I believe we all thought, okay, that’s not a bad diagnosis, and I would only need antibiotics. I thought, I’ll go home tomorrow. Forgetting who we were talking about here…it was me after all, and nothing goes according to plan in my world. I know the doctor didn’t even imagine what would happen over the next few days.

The official diagnosis was encephalopathy caused by UTI. Later I did a lot of research on encephalopathy and encephalitis, which occur when an infection lodges in your brain and swells it, resulting in a vast array of strange symptoms as you can imagine. You can actually die from it – so glad I did not know that at the time. Normally you are not out of your head and comatose as long as I had been. I was admitted Friday evening and began IV antibiotics. I endured two days where I would be lucid and could hold minimal conversations, then would relapse into nonsense, animal sounds and disorientation again within seconds. The doctor was baffled and my kids were alarmed. This should not have been happening once I was on the antibiotics. The two days in Gettysburg Hospital were an ordeal. The first night I woke up and had (gross alert) vomited all over myself in my sleep. I felt paralyzed and was softly calling out “Help me, Help me” over and over. My roommate arrived at my side and looked horrified…fortunately the nurses rushed in and got her back into bed. The next morning, I learned this sweet woman only had one leg and I could only guess she had jumped across the floor to get to me. Lucky for her she went home that morning and got away from me.

Saturday night I couldn’t sleep. I felt really sick, confused and pretty much as miserable as I’ve ever been. I couldn’t call home to my kids because I couldn’t remember my phone number. When one of the nurses gave it to me, I couldn’t push the buttons on the phone and gave up in a fit of extreme frustration. My room was in the front of the hospital and I was by the window. I sat up for hours in the dark watching the large spotlighted American flag out front waving in a light wind. When one of the nurses came in and asked me what I was doing, I remember nodding my head outside and saying, “Just watching. It’s so beautiful.”

Sunday morning I was still begging to go home. My kids, Jess and Cameron, came in to visit and I was fine. They left for one hour to go eat, came back and I was insane yet again. I saw them standing in the hall looking shaken. When they came back in, Jess said the doctor asked if I knew who Cameron was. I nodded my head and he asked again. I said, “Yes.” He said, “What’s his name.” I didn’t know. The doctor then gave me that silly little, “follow my finger”, eye test which I thought I had done. Jess told me much later than my eyes never moved. In any case, that’s when he said, “I can’t send you home. You’re going to go to York Hospital and see a neurologist. We’re going to call for transport right now.” My plans to get out of there were foiled again, but it’s difficult to argue when you can’t speak. It’s amazing the power of the spoken word and how vulnerable you are when it is unavailable to you.

In any case, that’s when all hell broke loose and things went downhill by the nanosecond.

Forgot to mention, one of the strange symptoms of encephalopathy is uncontrollable sobbing – not crying – sobbing. Well I sobbed and screamed and sobbed some more. While they were waiting for the York ambulance, they decided I needed an MRI. My doctor asked me later if I remembered the nurse in the tube with me. There had been so many people in the MRI room, probably just to watch the show I was putting on. I was sobbing and thrashing and I told him, “Yes, she crawled into the tube on top of me.” He laughed and nodded that she had. Holding up my hand inches from my face, I said, “She was this close to my face and was shaking her finger at me and telling me I had to be still and stop acting like this.” He thought it was funny. I just remember being angry and wondering why she was being so mean to me.

The MRI attempt was unsuccessful and they immediately wheeled me down the hall into a small room with no lights and one man who seemed to be mad at me. I guess I was afraid because I recall sobbing there as well and moving about and pushing him away. I asked Jess weeks later what I was doing in this dark room with just this one man. She said he was trying to do an ultrasound of my carotid artery…then it all made sense. Jess added no one was mean or mad at me, but that’s how I remember it.

Well, the York ambulance guys arrived and, in my opinion, they weren’t nice either. From what I’ve been told, I think they were shocked to see me when they got there. According to Jess, I appeared to be some kind of possibly dangerous mental patient. They strapped me onto a gurney and loaded me into the back of the ambulance. I was strapped so tight I couldn’t move any part of my body and I howled and screamed and sobbed some more. I remember watching Gettysburg disappear behind me in the rear window and the further we went the louder I screamed. If I had known Jess and Cameron were following the ambulance, I might have felt safer. In hindsight, if I had been the ambulance crew, I think I would have wanted to knock me unconscious, and I’m pretty sure that’s what eventually happened because about the time we were coming into New Oxford, I was out like a light. I’m guessing they had to call ahead to get permission to do that…I hope.

Again, weeks later, Jess told me when we all arrived at York Hospital, the staff said, “This is not what we were expecting. She is not what was described to us.” Lucky for me maybe, or I might have been rerouted to some mental institution. Jess said, “The nice Kathy left Gettysburg and the horrible, crazy Kathy arrived in York.” Then things got really funny…at least I thought so.

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Not In My Head

Some of you may have been wondering where I’ve been…well, nowhere and everywhere might be the best answer. It’s a bit of a fascinating but long story, so I’ll break it down in segments. If you enjoy the bizarre you might be interested in continuing. This is all true.

My son calls this period of time when I was “not in my head”. My daughter, always colorful, prefers to say when I was “batshit crazy”.

On the first Tuesday in February, the 5th, I made a phone call to a coworker at 4:00 pm. I was not sick, had no symptoms of any illness, but this was my last conscious memory on that day. I spent, what I discovered later was three full days, upstairs in my bed, unaware of anything that was happening, unaware that anything out of the ordinary was even occurring. The only thing I recall during this period is very fleeting, yes, like a dream. At some point I remember taking off my nightgown and throwing it in the shower, later, in bed, wondering why I was naked. I remember once I went into my daughter’s bedroom and lay down there, then realizing I was in the wrong place, went back to my room. I couldn’t tell you whether these events took place Wednesday, Thursday or Friday. I remember trying to drink water from my bathroom faucet, possibly because I was becoming dehydrated. That is all…I spent 72 hours in my bedroom and that is the extent of my recollections.

Meanwhile, in the real world, I was missing appointments with clients, not responding to emails and texts, mail was overflowing the mailbox, papers were piling up in my driveway, my car was there, and no lights were on – literally and figuratively. I was in bed unable to do anything to help myself because – hey, I had no idea I needed help.

Looking back, I wonder at the various ways this could have ended…all of them worse than how it did.

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Somewhere, deep in my brain, I heard noises, pounding, voices – and I thought that sounds like Michele. Where is that coming from? It became like a drone in my head, growing louder and louder. I stumbled from bed and walked into the hall. I realized two things at once – there were people at my front door and I had no clothes on. Lucky for them I had sense enough at that moment to throw on my bathrobe.

They had been prepared to call 911 and/or break into my house. A client/friend/neighbor had called my office to explain she had not been able to reach me for days and was concerned. The office called my friend Michele, as she and I often work together. Michele was there on my doorstep, along with two of my neighbors, within the span of about five minutes. When I opened the door late that afternoon, they all looked terrified. At least one of them had expected to find me dead.

I said, “What are you guys doing here?” I was still in la la land but doing a good job of pretending I was fine at this point. In unison, they peppered me with questions, “Are you okay? Do you know what’s been happening? Do you know who we are?” I said, “Of, course I know who you are.” Not believing me, I had to prove it by identifying them. Then Michele scared me to nth degree when she asked, “Do you know what day it is?” That was the question that put me over the edge because I suddenly realized I had no freaking idea what day it was. I said, “Stop this, you’re scaring me.” They came into the house and began to explain that no one had seen or heard from me since Tuesday and it was now late Friday afternoon. My poor kitties had no food or water this entire time and Michele fed them and filled their water bowls. They love her.
When I realized I had been upstairs for three days and nights, I said, “Maybe I lost weight?” I was grasping for some sense of me and humor is my fallback safety net.

Michele called both my son and daughter in DC. She told them, “I don’t want to alarm you, I’m here with your mom and she’s fine (well, not really), but she doesn’t exactly know who she is right now.” Michele was a master of understatement. Of course, they said they were leaving work, packing and heading for Gettysburg. My neighbors left and Michele went upstairs with me to help me dress to go to the ER. I would love to have a video of that (or maybe not). I remember Michele kept asking me what I was doing and I told her “getting dressed”. However, I was trying to wear a bath towel. I tried several times but couldn’t figure out how it was supposed to go on. She finally said, “I think you need some sweats.” “Oh, okay,” I agreed.
She supplied what I needed and I said, “These don’t match.” My fashion sense was still functioning. She said, “No one will care.”

She drove me to the ER. I guess you could say I was confused but compliant. We walked into the ER at Gettysburg Hospital and that is when I completely lost the ability to make any coherent sounds.

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