Day Twenty: The Things We Treasure Today’s Prompt: Tell us the story of your most-prized possession. Today’s twist: We extolled the virtues of brevity back on day five, but now, let’s jump to the other side of the spectrum and turn to longform writing. Let’s celebrate the drawn-out, slowly cooked, wide-shot narrative.
Good luck to all who read the whole thing and I promise never to write this much again!!!! 4189 words
It all started innocently enough. I first noticed I couldn’t feel my fingers. As things progressed and I told my story over and over again I realized it actually started weeks before.
I couldn’t feel the cigarette smoke go into my lungs. I remember telling Jax, “I can’t suck. I suck at sucking.” I was also eating a lot of Tootsie rolls. Every time I generated some Tootsie roll flavored saliva I would cough, sputter, choke almost. I blamed these things on a sore throat and slight fever. Little did I know that these simple, little things would turn into what it did. I went from dead fingers and a throat I couldn’t control to not being able to hear what I say and my brain not communicating properly with my body.
My brain doesn’t always register what my fingers type, but knows if it’s right or not. Sometimes I care sometimes I don’t.
At Christmas dinner I noticed one thing. I couldn’t feel myself swallow. I was still not concerned. I did not think anything of it. I just thought it was some weird freaky strange thing. Nothing to worry about, It would go away. I slept well that night. The next day was different. I woke with no complaints. I still couldn’t feel my fingers, and was still not concerned. I thought to myself, “I will mention it to my doctor when I see her next week.”
Within a few hours I couldn’t open the sliding glass door to let the beagle in. BUT, I could open the refrigerator to get a bottle of water. I started thinking that maybe something was wrong. If I can’t open the door for my dog or light my own cigarette, there might be a problem. Jax and I both thought it would be best if I called the doctor. Of course this was the day after Christmas and the office was closed. The doctor covering was actually closer to my house and they wanted to see me at 2:30. This is when I began my first lesson of this whole experience. 2:30 was a long way off, I would learn how to wait.
At 2 PM I could put on my sweatshirt. 1 hour later I could not take it off.
All I thought about was “it is the day after Christmas, in New England and I am only wearing a sweatshirt. The sun is shining bright and the temp is reasonably warm. The fact that my arms don’t move doesn’t really bother me.”
We didn’t stay at the doctors long, they wanted us to go straight to the ER. I must briefly mention this doctor’s office. For a place I had never been before I felt very comfortable here. There was a Dustin Pedroia “fat head” on the wall and I knew the medical assistant. I knew I had to be a bit nervous as I repeated over and over again, “it should be Kevin Millar on the wall not Dustin. Kevin Millar, not Dustin. It should be Millar not Pedroia.” The medical assistant talked to me. She kept me calm. This was the first incidence of thoughts coming into my head and straight out my mouth. The doctor I saw a week later described it as me “losing my filter”. I basically spoke without thinking.
When leaving the doctors, I noticed I was walking very slowly. Whatever was going on was progressing and I was starting to get a tad concerned.
At the ER 5 minutes later, walking was very hard. Jax had to fill out the paperwork as I could no longer write. Very little waiting here. They got me right in. I was amazed at how quickly they started to care for me. I have never seen a small town ER come alive as quickly as this one did. One nurse was drawing blood as someone else started an EKG. I was getting nervous and asked for Jax. It took 2 hours for him to find me. They never went and got him. OH well, except for this, they were taking very good care of me. Plus their focus was on me, not on finding him.
While waiting (there’s that word again), I sensed I had to pee. I couldn’t feel it, but on some level, in my head I knew I had to go. I didn’t think walking was an option at this point. Bring on the bed pan!!!! After quite a while of trying to relax parts of my body I could not feel, I only managed 3 drops. Plus, peeing while lying down is not that easy when you are in control. Forget about it when you have lost that control.
Later without thinking, I made a slow trek to the bathroom. I got part of the way there when it was suggested I ride the rest of the way.
You have no idea how proud I was when I peed. I announced it to the whole ER. Remember “no filter”. It was good that I peed as they wanted a sample. They also did a cat scan which showed nothing. At this point I could lift my arm to scratch my head, but couldn’t put my arm back down. The doctor did some neurological tests like follow my finger, now squeeze it. I don’t know if I passed. This ER knew they couldn’t help me so it was off to the big city hospital. By way of ambulance.
On the way to the big city, I lost the ability to talk.
What a trip this big city ER was. A nurse said it was a calm night, but boy was it ever busy. There were people everywhere. Voices on top of voices on top of more voices. Patients never stopped coming in the doors. I liked my ‘room’. I could see it all from my vantage point. My ‘room’ was the hallway. Two people occupied the stretcher down the hall a bit. I don’t think this was another space issue, I think it was love.
I still couldn’t talk and was very scared. I never realized how frustrating it could be to not be able to talk. Until it was taken away from me, My name tag did not have my name on it. I was incapable of telling anyone. Finally by way of frantic hand signals, nods, and shakes of my head, a nurse finally understood what I was trying to say. They gave me the right name.
Jax arrived quicker than expected. I saw him from a distance and was able to wave. Couldn’t do that at the other ER. When he got here, I had already seen one doctor. It was very frustrating trying to tell this Doc. all that had been happening. All I could get out was “Call the other hospital.” This Doc. knew everything any way. He just wanted me to say it all again. Wicked not funny. I must say, “Jax, not the Doctor, is a very smart man.”
Jax noticed almost immediately that if I didn’t try hard or think too much, it was easier to spit words out.
The neurologist was next. He was difficult to understand as he was definitely not from this country. I pointed to my ear every time I couldn’t understand him. Jax was right, if I didn’t try, it was easier to do things. We told the neurologist this. With much effort and little thought, I was able to add, “my sense of humor is one of the best and I am doing everything I can to keep it.” For some reason I felt this was more important than whether I could squeeze his finger or not. I have never spent more time with one Doctor. His questions and tests lasted forever.
At one point I don’t think this Doctor appreciated my humor. He wanted me to remember three things. They were auto, bowl, and New York City. Being a diehard Red Sox fan, my brain would not allow me to say New York City. It kept saying “Yankees suck”. He laughed the first time this happened, but not all the other times. I was trying so hard to be good, it just wasn’t happening. I was freakin’ out inside and laughter helped. Finally after doing more and more tests, he left my hallway.
After a short bit the original ER Doc came back. He had good news.
“There is nothing wrong with you. You passed all the tests we have and we couldn’t find anything wrong. You’ve seen the best neurologist. The best Doctors. Had every test. We put our heads together and came up with conversion disorder.” He explained a bit of what this was and continued, “You can go home. See your psychiatrist as soon as possible. Here are some names, numbers, and instructions for weakness of unknown origin, depression, and suicidal thoughts. There is nothing we can do for you. You can talk to a Psychiatrist here before you go if you’d like.”
This was all a tad shocking. As far as I knew I still could not walk.
How was I supposed to function without the ability to move?
I had a feeling he was going to come up with a psychological reason for this crap.
I am having trouble believing my brain is capable of this.
After a short bit they sent a Neurological Psychiatrist dude down to talk with me. I think I wanted him there to convince me that yes, my brain was capable of completely shutting down my body in this way. This Doc made sure I was ‘not at risk of harm to self’ and left.
Impossible earlier, I again had to sign some papers.
With Jax’s encouragement I was able to write my initials. It took a long time, but I did it. I figured if the doctors were right, and there was nothing physically wrong, I could sign my name. I just didn’t know I could do it. I had already walked to the bathroom with help. I was so proud that I was able to pull my pants up by myself. I didn’t think about it, I just did it. Still “no filter” as I announced this small feat to the whole ER. The nurse who discharged me rolled me to the door, said Good Luck, and left me. Eventually Jax found me.
When we arrived home, I felt gratitude that there was no snow on the ground as my feet were covered in just hospital socks. I would not have enjoyed walking in snow. It was just too hard to think about putting my shoes back on. Without thinking too hard, I struggled up the few steps to my back door. I kept telling myself that there was nothing wrong and I could do it. I trusted that I could do it. Funny, this was how I got through an anxiety provoking situation a few weeks prior. I just kept telling myself that I could do it and there was nothing wrong. Hmmmmmmmm, The power of the mind comes up again. There wasn’t much to do once we got home. Jax helped me smoke a butt, (which is something I really, truly wanted). And I went to bed. Didn’t even waste time peeing. Couldn’t be bothered.
The next day was interesting. I woke up before Jax and went straight to the bathroom. I didn’t think about it, I just did it. I was so proud to tell Jax what I had accomplished all by myself. Maybe this wasn’t going to be so bad after all. The big city Docs recommended I see a psychiatrist for follow-up. Luckily I already had an appointment scheduled. I have a history of depression, OCD, and anxiety. I am being treated for all and am or thought I was feeling better.
On Saturday I was able to do a few more things…. stand up, walk to the door, smoke (with help), and pee. Getting TP was very hard, but someone how I managed. I am also noticing that I can do stuff, I just don’t know I’m doing them. I am not sure how to better explain it. I basically just went on with my day, did what I could, trusted that I was doing what I thought I was doing, and went to bed.
My constant thoughts were “I can’t handle this waiting thing anymore. I am getting too much practice with waiting. I should be better at it by now. I can’t wait to see my shrink. I just want this crap gone and I want it gone NOW!”.
Sunday morning was the best. When I awoke, I immediately announced to Jax that I was back. I had walked to the door without a problem and may have even opened it. A few minutes later, after fully waking up, I noticed that I still couldn’t feel my fingers. I didn’t care that much, I HAD HOPE. Hope is pretty powerful. Just like the brain. My symptoms slowly returned throughout the day. I was having trouble turning on the bathroom light and getting TP was still a tough chore to tackle. Jax suggested we take a ride. We ended up going to NH. I could walk slowly and get into a car. Dealing with the door handle and putting on a seatbelt was not happening.
It is these simple, little things that I am grateful I am able to do today.
Monday was Monday. I couldn’t do much. Jax was very helpful, yet I sensed he was tiring of it all. I know I was. Jax kept me fed. He did a fine job with this. Eating was still very hard, but I managed. I could talk, but couldn’t hear myself talk. I was constantly asking Jax, “Did I say that out loud? Did you hear me? Did I say that?”
Tuesday was Mom’s day. Jax was getting a break from me and got to go to Work. Technically, there was nothing wrong so I couldn’t ask him to take another day off from that joyous place. He really does love it there. I don’t blame him, It is a fun place. I had already spoken with my mom and explained what was happening. I assured her that I was okay, I just needed some help. Jax had left the slider unlocked and I was able to open it all by myself. This was tremendous progress. Mom’s job for the day was to get me to the doctors. This is the Doc who has the dog. I think it is way cool that my doctor has a dog with him. How can I not trust the man? We got to the doctors early so I got to experience waiting again. I didn’t care anymore, I was getting real good at it. I couldn’t talk to the receptionist, so Mom helped me. Jax had written down most of what had been happening just in case I lost my voice again. I’m glad we thought to do that. It was less stressful that way.
I ran into my doctor in the hallway. He apologized for being a few minutes late and would be right with me. I tried to respond, but again could not talk. I handed him the paper Jax had written out. I tried communicating that I could not talk, but couldn’t get my point across. I figured if anyone could relate to my struggles, it would be him. He is deaf and uses an interpreter. He also uses a very cool dog for help. That dog makes everything okay at our appointments. I once told my doc that I didn’t come there to see him, I only came to see his dog.
Humor is so important in my life.
This Doc asked a lot of questions. Sometimes I could answer, sometimes I struggled with answers, sometimes I could not answer. He checked out my body, looking for any physical reason for what was happening. He did notice Parkinson like symptoms. He said I was shaking a bit. I couldn’t speak so telling him that I shook all the time was not possible. I couldn’t get it out. I like a doctor who knows and admits when he doesn’t have the answer. Makes them more human like. He needed some time to look some stuff up.
He asked his dog to sit with me. I loved this. I love dogs. At one point the dog put his head on my foot. Things were still weird for me and I wasn’t sure if this was actually happening. After asking the interpreter “Did I say that?” numerous times, I asked if the dog did in fact have his head on my foot. He did. This was important because of what happened later. I told her I tried using the few signs I knew in the ER when my voice failed me. No one understood what I was doing so it didn’t make a difference.
Communication has become very important to me.
When my doctor was done with his research, he gave me his diagnosis. He decided that a medication I take for OCD was reacting with one I take for heart burn. It didn’t matter that his diagnosis was different from the doctors at the hospital. I was willing to do whatever I had to do to feel better. If that meant decreasing a medication and a recurrence of OCD, I would deal with that. Obsessing over some numbers and recurring intrusive thoughts was nothing compared to not being able to wipe my own bum.
Wednesday was Mom’s Day again. I needed a ride to see Joan. Joan is my therapist. I had called her earlier in the week and left her a message. “Look up conversion disorder and become an expert by Wednesday. Hope you have a nice day.” I figured if the doctors couldn’t fix me maybe she could. I had never heard of conversion disorder before so I figured I’d give her the heads up just in case it was new to her as well. When I first saw her I asked if she had read my file from the day before. She had not. It would have been good if she had as I really didn’t want to have to repeat myself again. I wasn’t even sure I could.
Anyway when I first got in her office she told me she had looked up conversion disorder. The site she read stated that it was caused by trauma. I was told it was caused by severe anxiety. I have no trauma so I am going with anxiety as the cause. Looking back, I realized a nurse at the original ER had asked me if I thought this could be anxiety. I thought about how the anxiety I had been experiencing had been gone for over a week. I said, “No. It is not anxiety.”
I always need to sign a form when I get to therapy. I took one look at it and told Joan I was having trouble doing stuff like writing, but I would do my best. It took me 20 minutes, but I did it. This is important. Even a little progress was very important to me. I cannot expect perfection. Every little step I took was important. I did my best to tell Joan what was going on. It was a struggle, but with a lot of patience on her part, I got it all out. I was talking better than the day before. Still not great, but better. Progress.
Thursday was New Year’s Day. Jax worked in the morning. Mom and I made tentative plans for lunch, but I wasn’t up for it. I spent the day doing the best I could. I still wasn’t sure when I talked. I couldn’t quite hear myself speak. Simple tasks were getting easier. I still had trouble believing I was doing what I thought I was doing, but I was doing it. My body and brain seemed disconnected somehow. I take supplements. I could open the bottle and pour the pills, but needed Jax to tell me how many I had in my hand. Eating was hard, but I did it. I still couldn’t feel my throat. I quickly learned to chew very well. I couldn’t feel myself chew and was afraid I would choke. Today, even though all symptoms have subsided, I still find myself concentrating on chewing.
I never really thought about chewing before, now I do.
Friday I became more confidant. I had spent plenty of days asking for reassurance that I was actually doing what I thought I was doing. Today was going to be my day of just doing. I felt good. I felt like I could get things done. It had been over 3 weeks since symptoms began. Exactly one week since I became concerned that something was wrong. I was given two diagnoses. Conversion disorder and medication interaction. I did not know who was right. I did not care. I was getting better. I would listen to all the doctors and do what they all said.
I continued to feel better. Each day I was able to do a bit more. I shuddered to think it might happen again. If it was the medication, problem solved. If it was anxiety, I could work on that. Anxiety can be tricky. Ever since my depression got better, I noticed an increase in anxiety. Almost like I woke up and bang, FEAR. A lot of fear. I was more aware of feeling anxious and was getting more practice dealing with it. Here too I was looking for progress, not perfection. Despite feeling anxious, I would still do things. I would not let anxiety stop me from doing what I had to do. I figured everyone felt anxious at times. I may feel it a bit more, or a tad stronger, but that shouldn’t matter. I could walk through my fears. I thought this was dealing with anxiety. I was able to overcome the anxiety, but never realized I was still feeling a tremendous amount of it.
I was in the middle of making a major life decision. I was feeling very stressed about this decision. Finally after weighing all options, the decision was made. The stress was gone. There was no more anxiety. The knot in my stomach had disappeared. I felt relief. I almost felt manic. Manic-like is the only way to describe how I was feeling. Maybe ecstatic is a better word. I didn’t know at the time, but the anxiety I had been feeling was turning into a monster. A monster I never saw coming. I didn’t know that within a week that anxiety would take over. Completely take over.
I have learned a lot from my experience. Yes, I learned how powerful anxiety can become, but I have learned so much more. I know how important it is to be able to do the little things. I can talk. I can walk. I can see. I can drive. I can write my own name. I know how easily all of this can be taken away. It was all taken away from me slowly. It was given back even more slowly. Today, I do more. I talk more. I feel more. I believe more. The bottom line is I feel gratitude every time I pee by myself.
There isn’t a lot of information about conversion disorder. I read numerous descriptions of what it was. Differing ideas on how it’s caused. I’ve learned it is not as uncommon as one would think. The one thing I couldn’t find was how to fix it. Mine went away. It took time, but it went. I had a lot of family support. I would not have gotten through this without them. I am afraid it may return. If this whole experience was medication related I have no fear. The problem is solved. If it was all caused by anxiety, I worry. I am now very aware always of how my fingers feel at all times. I think about whether I can feel myself swallow or not. I had a brief experience where I felt disconnected from my body. I immediately realized I was feeling anxious.
I took a deep breath, said “LIFE, it happens” and went on with my day.
I almost forgot. The dog putting his head on my foot was important to my beagle. When I got home that day all he cared about was the fact that my foot didn’t smell like it should. It is the little things in life that really matter. Ask a dog.