Posted in About Me

Daylight to Dark.

Inside this binder is how my life went from normal to abnormal.

The day started off like any other day. Getting up and beginning to get ready for work. My daughter and I had a daily routine each morning before I went to work and she went off to high school. Putting our make-up on to styling our hair, and making sure neither of us had anything between our teeth. You know, “Do I have anything between my teeth statement.” But this day was different, not normal, off in some way, but how? My daughter turns to me and says, “Mom there is something wrong with your face, it’s drooping, just not normal.” My reply, “Come on we need to finish up here and get ready to leave, or we’ll be late.”

You see my daughter road to work with me each day, as I had worked at the elementary school and she would board the school bus that transported her to the high school. That ride was like no other, concerned, yet not concerned, to my daughter telling me, “Mom you need to go to the ER, something isn’t right.” Once we enter the building of the school, we continue our walk to the office only for me to ask a few co-workers if they saw anything wrong with me. They recalled the same as my daughter did, my right side of my face is drooping, and that yes I needed to go to the ER.

As I’m preparing to call my husband to have him get ready I’m telling my daughter goodbye, have a good day, and everything will be okay. And assuring her that I’m going to the ER. The ride home to pick up my husband seemed longer than its normal fifteen-minute ride. Felt more like hours. I didn’t know to cry, or not to believe what was happening. As I had walked through the door to our home, one that I knew to be familiar was one lost. I knew the sounds of the dogs barking and them running across the floors excited to see me. The sounds of them welcoming us home every day after work and school. The smell of our perfume and to the house looking a mess. At this point I decided I needed to clean, I had to get everything put in order before we left for the ER.

My husband stands and watches as he is confused about what is going on. He hadn’t been home from work before we left for our daily duties at work and school. Once he could get me to look at him, he finally said, “Eve we have to go, we need to get to the ER.” With him walking me to the car hand and hand, I could feel the fear in the both of us, the confusion of how did this all happened. The ride to the ER got longer and longer it seemed, the weirder I felt. Feelings I couldn’t explain or even try to figure out. As we pulled into the parking lots, my right side of my body was becoming weaker and weaker. Was I having a stroke, a heart attack, what was going on!!! No, I couldn’t be having a stroke or could I? Not a heart attack because I wasn’t falling to ground gripping my chest in pain. So what??

Here we were in the ER getting ready to talk to the registry to get me checked in and answer the questions for why I’m having these issues. Those questions you are asked every time you visit a doctors office, do you have your insurance card, what is the issues you are having that brought you here today? Well, if I knew maybe I wouldn’t be here right now, is what was running through my mind. The longer I stood there, the more my right side became numb. The lady in her cute nurse’s scrubs hands me the clipboard with the million papers that need to be filled out. Only for me to almost drop it. With my husband standing beside me, I tell him, I can’t hold the clipboard it’s too heavy. He carries the clipboard and walks me to the waiting area. I begin filling in all the blanks when all of sudden I turn to my husband and say, “Honey, I don’t feel good, something is really wrong, you need to go get that lady at the desk?”

He and the registry came back to me, only to learn I can no longer talk, or move I was paralyzed. But how? How could this be happening to me? I could hear, and see, but what good is that going when you’re asked questions? Not good at all. The registry called for a nurse, which brought a wheelchair. I remember so clearly, the little old couple sitting across from us. Their scared emotions on their faces, but what really ran through my mind was, I hope my husband and I live that long. As the nurse began asking me questions, I became angry and aggravated because I couldn’t talk, and the questions continued to be thrown at me one after another. The more they asked the madder I became. The nurse asks my husband, “Has this happened to her before, his reply no.” As the nurse is asking me to get into the wheelchair, so we can go to a private room and begin the figure this all out. Once in that small, cold, stale sounding room, the questions began again. Looking at the nurse and then to my husband, I began to cry. But why am I crying, I’m still confused. My life is flashing before me. The Doctor is called in and just like the others who had seen me, was in shock, he’d never seen anything like it. He begins to examine me, looking in my eyes, listening to my heart, taking my blood pressure and asking if I could feel him touching the bottom of my feet, to the insides of my hands. My reply: BLANK! He orders lab work, CAT Scan, X-Ray’s, anything that would give us some answers. I began having seizures, my blood pressure shot to the moon, my eyes became sensitive to light, my teeth started chattering, and I had this awful pain, burning sensation, stabbing behind my right ear. At this point my husband is holding my hand but lost, in tears, yet trying to stay strong and not let me see him crying. The doctor turns to my husband, asking him a ton of questions with the same answer of No this hasn’t ever happened.

Puzzled was on everyone’s face. The Doctor begins asking about medications and health issues. My husband lists off all the medication I’m taking and for what reasons. I’ve been diagnosed with PTSD, Depression, Bipolar and high blood pressure, I was up to date with my OB-Gyn, and Primary Doctor so other than that I a healthy 45-year-old woman. Living life to the fullest. I had a job that loved and had been doing it for 11 years. Our son had just proposed to his girlfriend, so wedding plans were beginning to take place. Our daughter was about to graduate from high school. In the process of filling college applications out, and scheduling dates and times to tour colleges. Our year was pretty full with lots of activities. I was fearing I wouldn’t be a part of all these blessings, and how would my family move on without me. The confusion has worsened, and my anger has become even clearer. I wanted answers. And I wanted them right now. The doctor at the ER requested that I be transported to another hospital that could do farther testing and help us find the reasonings.

The staff was ordered to arrange to for an ambulance a room and the staff ready for me when I arrived. Only to find out an hour later, there weren’t any rooms available, the ambulances were also being used. The waiting game began. An hour went by, an hour in a half ticked by, to hours later, still at the ER waiting. Within that time, I began to get feeling back in my body. With a few places still numb. My upper legs felt like gel, as though my heavy hands were melting through them. The bottom of my feet were on fire, the pain I’d never felt before. I was able to talk some and was telling my husband my feet hurt. He began to rub them only to make them hurt worse. My husband calls for the doctor. Walking into the room the Doctor is shocked, lost for words, and confused. My bladder is working full force, I’m needing to potty. I announced I had to pee and now. I began getting myself up off the bed and trying to walk to the restroom. Nurses were called for help. But dumbfounded when seeing what was happening. I began stomping my feet on the floor, I had to use the restroom. One nurse runs for a portable potty and others, try to help me with my fancy ER grown. Doctor taking notes, my husband talking to me softly telling me to hang on the potty was coming. I’m moved to the potty with help, the doctor and nurses leave the room for some privacy. I look at my husband and say, “Can we go home please.” As I’m told no, while sitting on the pot, I begin to cry and begging my husband to take me home, that I was okay. When I finish peeing, I’m once again moved back to the bed, and looking at all the tubs, and tape, gauze, everywhere. Every machine possible was hooked up to me.

After 4 hours of being at the ER, I was finally transported to the Hospital. I remember asking, “Do you have to turn on those sounds and lights?” Yes, Yes we do ma’am. I’m thinking really, I don’t think so. But of course, as we’re pulling out of the parking lots there goes the sounds and lights. I had a nice lady with me in back. Who asked me questions about home, work, my kids, pet etc. The questions helped block out the sound and lights. Just like the doctor ordered, the staff was ready for me (as I thought?) and I had a lovely room overlooking traffic. The nurse who took my case wasn’t aware that I had arrived and put in the room. As I sat and looked at all the pokes, bandages, the gown and at the cold white room, I teared up. This own time my husband is filling out more papers. They should have written a book. A nurse passes by my room, peering in she asks, “How long have you been here dear?” Me, “Oh’ about an hour.” As she puts her hands on her hips and excuses herself, she walks to the nurse’s station and lets them hear it. I could hear her ask, why didn’t anyone tell her that I was there and in the room, why didn’t anyone go check that patient, what is wrong with you people? I hear her footsteps coming towards my room. She tells me how sorry she is, and that this isn’t normal, and she will talk to the head nurse about this. She was not happy.

Just a few of the MRI’s I’ve had done.

Within a few minutes of meeting my nurse, I begin to have my attacks (as I call them). She yells for help, just like that, there are a million nurses, well it seemed like it in my tiny room. My nurse breaks out her little flashlight shining it into my eyes, I try to block with the arm that had little movement. Walks through the door, my husband. Question after question is asked, he tells them, “She’s never done this before, we don’t know what is happening, that’s why we were sent here. The round of tests was being put into place, my few hours stay became a 4-day stay. My children came to visit just a few hours after me arriving at the hospital. Only for when my son and his fiancee to walk in the room with two dozen roses, it was Valentine’s Day. Staff is called to the room, to make their way through the maze of people because I’m having an attack. My son standing at my feet, surveying what’s happening. I could picture the worry on his face. Within moments I’m back to normal, only dealing with the burning on the bottom of my feet. Our daughter walks through the doorway, only to begin to cry in her daddy’s arms. I am so thankful that our dear friend brought our daughter and her boyfriend to see me. Once again I go into having an attack, moments later peers a normal mother.

As the late afternoon turns to into evening, the nurse comes in with the orders for the blood work, tails right behind her, the lovely person to take my blood, followed by a bed on wheels. WHAT a bed on wheels, where am I going? Mrs. Stokes are you ready for your CAT Scan, my husband replies, she had that done at the ER. Sir, it’s in the orders to have another one done. Off I go with a new set of people, to have a set of test done. I couldn’t wait to get back to my family in that fancy so call hotel room in the hospital. Yep, all my family were all still there waiting on me. Ma’am, the nurse says, “I’m sorry but we have another set tests we will be continuing tomorrow morning.” Me, “Tomorrow? What I thought I was going home.” No Ma’am, the doctor here at the hospital has decided to keep you another day.” Tomorrow morning, you will have an MRI, EEG, EKG and more blood work done. WHAT!!!! On this “Tomorrow day” is when we found out I wouldn’t be going home that day either, but 2 more days from that day.

The darkness

Friday had arrived, I was doing great, having no issues, except for the droopiness on my right side of my face. The speech doctor came in to visit, did some exercises with me, and handed me a package of papers that had the exercises on them so I could continue to do them at home. Then followed a Neurologist, which had not answered for us, Except Mrs. Stokes from the MRI, it shows you have Demyelination and you have Bells Palsy. Well, I knew about the Bells Palsy, my loving speech doctor told me that. But what is Demyelination? I asked the Neurologist. He casually says, “Its a form of MS.” My husband and I look at one another and asked at the same time what does that mean? Again the Neurologist says, “Well, she can be in the first stages of MS or in the second stages.” Yes, but what does this mean for her life from here? The Neurology asked us questions as to why I was brought to the hospital as we tell him, he tells us I quote his words, “Hmmm, I’m confused, I don’t know what is wrong with you, but you have MS, Mrs. Stokes.” He get-ups hands us a business card and walks out like nothing had happened.

As my husband and I sat and sayidnothing at all to one another, my nurse walks in and asks us how we are doing. We didn’t say much of anything except for Confused. The Neurologist who just left the room gave us no answers just more confusion. God Bless the Nurses that go the extra mile. She went and got my discharge papers along with a few business cards for other Neurologist I could contact. I was sent home with a list of new medication, I wasn’t allowed to drive, or be left alone. I basically was adult-sat. I wasn’t able to go back to work either. I continued to have small attacks at home, only to find they were happening more often. As a family, we sat down and had a discussion on what our next plan was. We decided I would go back to seeing my Counsellor, which I had been seeing for years.

We found a new Neurologist, who once again did a ton of tests. We were finally getting some answers we thought. The MRI’s weren’t showing why I was having these episodes, but they did show I had 2 small white spots on my brain. What caused those we don’t know, and we never figured it out. I had a lumbar puncture done, in hopes that the fluids from my spine would give us some answers. No, those came back clear, nothing. The Neurologist couldn’t figure out why I was having these issues. Except he did tell us, that my clinical symptoms do seem to be related to my underlying psychological state. For the Bells Palsy that went away with time and medication but it seems to be separate from either anxiety problems or MRI findings.

The wedding didn’t go as planned. Lots of stress, misunderstandings, miscommunications, not feeling involved to hurt feelings. Our son married and moved their belongings out of our home, and into his and his wives home almost 7 years ago. The day out son moved his belonging out, was a volcano. Arguing, saying mean things to one another, not wanting to work on things, the issues became a battle. I was sick of being sick. We were hurt because we weren’t included in the wedding plans, although we offered, we got nothing in return. The rehearsal night came, we had not a clue where the wedding would be taking place, except for using our invitation. The wedding day came, and nothing had been mended. But we carried on as a family as I had thought.

I continued to see my counsellor every week two times a week, being taxied by my mother or family in-laws. Our daughter graduated, went on to college and graduated in four years. Her time at college was hard, she worried a lot about me and my health. And struggled with not hearing from her brother. Yes, he walked away from her. Everything came to a complete stop just a week after the wedding. My life continued this path for 5 years, having the episodes, having MRI’s done, lab work, EEG’s, all the test every three months to being scheduled farther apart to 6 months. Nothing had changed. And still not seeing or hearing from our son. Carrying the hurt, stress, loneliness, the why’s, what if’s, how come. Which only dug me farther into my illness which we still didn’t have an answer.

On my 5th year of testing, and the whole nine yards, we finally came to my sickness had to do with the stress, of work, wedding, home, and life. Yes, Life…My life was falling apart and I was working so hard to keep it afloat. To just learn that yes, Mrs. Stokes you have Conversion Disorder. The stress had taken hold of me and my life. I was allowing the stress to control everything about me. How was I going to get better if I didn’t feel myself from the stress? I resigned from my position at work, a place I worked for eleven years. Excepting the way, things were between our son and our family. And finding joy in our Daughter and her adventurers.

The following year, my sixth year of dealing with my illness, I had my final MRI. Had finally seen light at the end of the tunnel. I was diagnosed with Suedo Seizures, Conversion Disorder or none as Functional Neurological. My life has been very good, not having andy attacks, able to do what I want when I want. Although I’m not able to go back to work. I can enjoy my home, my safe place that familiar place, a place I know I can get away if I need to. I have been released from my neurologist, to continue my medications, and to continue to see my Psychiatrists every three months and to see my neurologist once a year unless otherwise.

Just a small amount of information that I carried with me for six years.

https://rarediseases.info.nih.gov/diseases/6191/conversion-disorder

https://www.merckmanuals.com/home/mental-health-disorder/somatic-symptom-and-related-disorders/conversion-disorder

https://www.psychologytoday.com/us/conditions/conversion-disorder

https://www.medicalnewstoday.com/articles/322016.php

https://emedicine.medscape.com/article/1184694-overview

https://www.mayoclinic.org/diseases-conditions/conversion-disorder/symptoms-causes/syc-20355197

https://www.mayoclinic.org/diseases-conditions/conversion-disorder/symptoms-causes/syc-20355197

Author:

Wife of 30 years to my high school sweetheart Jon. Mother of 2 adult children, grandmother of 2 granddaughters. Pet lover of 6 dogs, 2 fish and 1 cat. I love genealogy and learning more about my ancestries. I like paying it forward through genealogy also. In enjoy crafts, reading, shopping, antiques and much more.

6 thoughts on “Daylight to Dark.

    1. Writing this took over 8 hours. I had to take small breaks as the emotions poured from me. This was a big process in our family, one that I feel we can build off of​, when we come to something else so big. I love you Rae

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  1. How scary for you. Sorry to hear you had to deal with all of that! What a horrible thing to have to go through. Your a trooper and a very strong woman!

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  2. Thank you for sharing all of that. I was on pins and needles reading it. It really makes me take a second look at how I am dealing with stress. What a scary thing to have happen to you. Prayers for you and all of your family.

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