I had a stroke on February 22, 2011 at the age of 33. This is my story...
It was February 22, 2011. I had been sick for a solid three weeks. I had fever, runny nose, watery eyes and all other sorts of misery. I would wake myself up at night with coughing fits so violent that sleep was nearly impossible. I strained so hard at one point that I pulled a muscle in my neck. Finally, after suffering through most of the work day, I left early. I finally decided that for any relief to come, I would need to pay a visit to my doctor. It was a routine visit, like any other. They swabbed me for the flu and assessed my other complaints, and eventually the results revealed that I did not have the flu. The office decided to give me a cocktail shot in the hip and some prescription cough medicine so that I could finally get some rest. I paid my copay, and went to the pharmacy for my prescription. As I waited, I gathered some juice and soup for later and then I went home. As I walked through the store waiting, I was on the phone with a friend. I can remember feeling pretty miserable, but I attributed it to the fact I was so sick.
About fifteen minutes later, I was headed home. I stopped briefly in the parking lot to talk to my neighbor and then headed inside. I started feeling a kind of weirdness that I didn't understand, and still can't really explain. I hadn't been eating a lot due to being so sick and not feeling like I could keep much down, and I thought that could be it. Maybe eating would help. I stood up to get something from the pantry, and I was instantly on the floor. It was as if someone kicked my feet out from under me. I tried to stand up after this first fall, and got some water and a few crackers. I sat back down, and instantly felt sick. As I stood up to go to the bathroom, there it was again. I was on the dining room floor. Only this time I couldn't get up.
I knew instantly something was wrong. I felt so sick and cold. I was sweating profusely. I crawled into the bathroom and made my way to the toilet and pulled myself up on it. I remember feeling almost drunk. My balance was way off. I tried to stand up, but fell to the cold floor of my bathroom. Panic began. I knew something was wrong. I pulled my cellphone out of my pocket and text messaged the neighbor I had exchanged keys with, "in case of emergency". No answer. There never was one.
I dragged myself to my bedroom and made it to my bed. I remember throwing up on my floor and sending a message to my neighbor that I had talked to in the parking lot. My phone was almost dead, and it took everything I had to peck out a message." Help me", I pleaded. "This is not a joke. Call 911". Those words were all I could manage. I honestly thought I was about to lay there and die. That at 33 years old, my fate was to die alone and I didn't know what was happening.
My neighbor came immediately, banging on my window, yelling at me that she couldn't get in. The door was locked. She went to find help to get someone to open the door and let her in. I don't know how I managed, but I crawled through the house and was able to unlock the door. I collapsed on the tile entry way of my living room and vomited until the ambulance came. It seemed like they might never come. What was taking so long? The paramedics kept asking me questions, and I couldn't answer them. I just knew that I needed help. My neighbor kept telling me that everything was going to be okay, and I was going to be fine. I wasn't so sure. She grabbed my purse and locked my door and came to the emergency room with me. Later she told me that she seemed calm on the outside to not scare me but she was terrified.
Once I was there, the hospital put me into a little room where I continued to vomit and gag and feel like death was a second from snatching me up. I can remember wishing it would, if that meant this would stop. At this point, I had her contact my sister. I don't remember a lot about the next few hours. I laid very still, hoping that no movement would keep the vomiting to a minimum. The light hurt my eyes so I kept them closed. I just wanted to sleep.
They came in and tested my blood sugar and my blood pressure constantly. They hooked up an IV, and kept it flowing. Somewhere in the midst of all this, my sister called my mother and had her come. Looking back, I can't help but wonder what each of them thought when they got that call. I had been in the emergency room earlier in the year because I injured myself and ended up on crutches. I imagine that they thought I had done something silly again. After hours and hours, my sister and her husband returned home to be with her kids. It was getting late and they weren't really saying much about what was going on. My mother assured her we would be okay and she would keep her informed. And then it was just us. The poking and prodding continued. I didn't feel any better than when I first got there. They busted in and announced that there was nothing wrong with me except dehydration. They were done. They discharged me. After a solid eight hours, they just gave up on me. My mother collected me and my things and we went to the all night pharmacy to fill the prescriptions they had sent for me. I waited in the car for her to go in and get them for me, and as I sat there the nausea kept becoming more and more aggressive. I cracked open the door and got sick all over the parking lot. All I could think was that I must have looked like a major drunk at this stage. The pharmacy said it would be a while, so she took me to her house and got me settled and then went back.
Throughout the night, I woke up every hour. I felt like I was going to be sick. I can remember the short trip around the corner to the bathroom and having to hug the wall to stay upright. I was no better. I was probably up a good twenty times that night but never could throw up. The next morning, I could keep nothing down. Juice, jell, pudding, it all came right back up. My dizziness was getting more and more concerning. I lay on the sofa at my mother's house and things weren't getting better. At the end of the day, my sister came to check on me and after a very brief visit, insisted that something was very, very wrong. She suggested we go back to the emergency room. Talking to her about things now, I can say with certainty that she saved my life. I agreed to go to a different ER and she tells me now that she knew it was serious when I didn't even put up a fight. It took two of them to help me get in the car, and away we went. I can remember getting into a wheelchair. I can remember giving the admitting clerk my insurance cards and waiting with the pair of them in the waiting room, and then like someone turned off a light switch, it all faded to black.
I woke up in an unfamiliar hospital room. I felt confused and disoriented. My doctor hovered over me as I slowly tried to focus and figure out where I was and what was going on. He and his nurse were speaking to me. "You have had a stroke. You are in Little Rock. Do you understand?" A stroke. But I was only 33. I can remember looking at them. Trying to talk to them, but I couldn't. I was on a ventilator, and couldn't communicate, and almost instantly fear set in. My family will tell me now, that the gap between my visit to Washington Regional and me waking up in Little Rock was pretty intense. In the emergency room, they decided I was only suffering from a severe case of strep throat. My sister refused to accept that diagnosis. I had been sick for so long, and taking antibiotics. She knew in her gut that something else was wrong. They dug a little deeper and looked at a cat scan they had done, and that's when they found it. Within minutes, a neurologist had been paged and he was drilling in my skull to insert a tube to relieve the fluid and pressure from my brain. It was official. I had suffered a stroke.
I do not remember any of this, and all I can think of is how scared my family must have been. Even now, a year later I am so sorry that I was the cause of such worry for them.
Arrangements were made to fly me to UAMS at Little Rock. I would get the best care there out of any place, so I was transported to the airport and loaded onto a plane and with my sister by my side; I was flown to UAMS with my parents driving as quickly as they could to meet us there.
I woke up, not knowing what time it was, or where I was. My mother, sister and father were there. I woke up to a tube in my head, one up my nose, a ventilator helping me to breathe and my left side was pretty much dead. I couldn't communicate. I remember feeling scared and frustrated and so very tired. I slept most of the time. I could hear people talking, and feel the nurses coming in to check my vital signs and other things but I was kind of "just there". I was always hot. There were times that I stripped my clothes off in an effort to cool down. Times that I pulled my catheter out because it was uncomfortable, but I don't remember any of that either. My mom tells how cold it was in the room. I was complaining about being so hot and she was bundled up in a sweatshirt the entire time. These are all tales that were told to me afterwards. My frustration grew more and more each day that I could not communicate because of the ventilator. It was like a never ending game of charades. I would try so hard to get my mom and sister to understand what I was trying to say.
Sometimes they could guess, sometimes they couldn't. I felt so defeated when they couldn't. Once, I insisted I could write it down. I had a pencil and a sheet of paper and to look at it now, it looks nothing more like the scribbles of a toddler. No words. Just squiggles. But I was so sure it said exactly what I needed, and when my sister explained to me that it was nothing, I threw the pencil and shoved the paper at her in anger. More than once, they had to throw up their hands and say they didn't know what I needed or wanted. I started having pretty strange dreams while in the ICU. I had some pretty vivid dreams about how my mom and sister were conspiring against me to kill me. I know that this was only because they couldn't help me sometimes. I feel guilty about those dreams considering they both did so much to be by my side.
I had a feeding tube inserted at some point in my stay at Little Rock. I remember being so hungry and thirsty I thought I might die. This tube was inserted in my stomach because my vocal chords where paralyzed when I had my stroke, and food and water were not able to be digested without choking me. I was fed through this tube for around three months. I just wanted water, but it was against the rules. Another defeat.
The nurses would come in and ask me to squeeze their hands. If I didn't comply quick enough they would pinch my collarbone as hard as they could. It was painful as much as it was annoying. Months later I learned that act was the deciding factor of whether or not to take me to surgery. Luckily I escaped that part. At some point it was discovered that I had my contacts in, and the nurse removed them. Once that was done, I could not see clearly at all. Sometimes I had my glasses given to me, but for the most part I just slept.
There is so much about my stay at Little Rock that I don't remember. I do know that there were no windows in the ICU. No clocks that I could see from my bed. It could have been 3am but I might have felt like it was noon. My doctor would come around and check on me each day. He would ask me the same questions every day. Who is the President? Where are you? What year is it? I asked my mom why he kept asking me the same stuff over and over. He would come in each day and assess the situation and say my tubes were not ready to come out yet. I would wait and wait for him to come but in a matter of seconds, he would crush my hopes. He would always say, "Maybe tomorrow". And I would wait and wait until the next day only to be told "maybe tomorrow".
The staff there was great. My doctor kept telling me over and over that I should have died. For everything that I cannot remember, that is the one thing I will never forget. Those days in the beginning were so hard. Not just for me, but for my family too. They worked hard to make sure my bills got paid on time, they informed my friends of what happened and kept them in the know, they responded to phone calls and text messages that came to my phone. They contacted my work and insurance companies. They talked to my landlord; they took care of my animals. They read me all of the cards that were sent, and above all, they kept telling me I was going to be okay. I wonder sometimes if they really believed it. All this was going on while they had no real idea of what was going to happen. My mother never left my side and my sister worked a full time job, took care of her family and spent every possible second she could with me. She kept a running log of what was happening to me so that friends would know where I was and what was happening. And so that I might know someday too. There will never be enough words or enough time to express how grateful I am for everything they did for me.
As the tubes came out one by one, my mother sat by me on my bed with a hand mirror. She explained to me about the tube in my head and how it had been there since the emergency room. I remember her saying, "You look a little different". She handed me the mirror, and to my horror, my head had been shaved on one side. I had been shaved down to insert the tube without any hair getting in the way and contaminating the area. Not only was I facing that, but my eyes were crossed. I had double vision, and to me I looked terrible. I was embarrassed by the way I looked now. I was finally free of all the tubes and hoses, but things still weren't normal.
I had a birthday when I was in Little Rock. I don't remember it or any of the flowers or gifts that were sent. My best friend called and sang happy birthday to me. My mother held up my phone and put her on speaker. I love that she did it, but I don't remember. Nor do I remember my sister playing music for me on my iphone.
I had been stuck in bed for what seemed like forever. The first time they got me up and out of bed were after I had been moved out of the ICU. I was shocked to find that I couldn't stand up very well. My left side was still a little iffy. I kept getting turned like a little baby while I lay in my bed because I couldn't do it myself. I felt dirty because I was bathed in my bed, but my hair wasn't. I couldn't walk, and sitting up was painful. It was tiring and my tailbone hurt. I have never felt more helpless in my entire life. I was hungry and thirsty. I was hurting, and the only positive thing this far was I was finally able to talk to the people around me, even if I saw two of everything and everyone.
Therapists would come to my room and work with me each day. They would get me up out of bed and work with my standing and walking and have me sit up in the chair. I had to have someone hold on to me at all times. My balance was very poor. They came in and put a tube and camera up my nose to see my vocal chords and they were still not functioning correctly. My mom talked them into letting me have a Popsicle one night, and it was amazing. It was the first food I had in my body since my stroke.
And one day, my doctor came in and told me I could go home. It was sweet music to my ears when I heard this, until I found out that going home, meant going to Northwest Arkansas. I thought I was done with hospitals but I was loaded into an ambulance and taken to a rehab hospital in Fayetteville.
I can remember that ride very well. It was long and lonely because my mother was following behind in her own car behind me. I was strapped down on a gurney and I can still remember how uncomfortable I was. I rode the entire way with my eyes shut. I had no idea what was waiting for me, and I was scared to find out. When we got there I was wheeled in and put into my room. They people that brought me in transferred me into the bed that was there for me, and off they went. My roommate was an elderly woman, and I can recall not making much eye contact with her, or anyone else for that matter. Some administrators came to welcome me but I can remember anger and feeling like this was more like a punishment than rehabilitation. They told me to get settled in, and relax, and someone would be around tomorrow to talk with us and set things up for my schedule to start all of my therapies.
Here I was a grown woman that couldn't get out of bed without help. I was reduced to a wheelchair. Because of my lack of balance and the fact that I could not lift my hands high enough to brush my own hair, I had to have help. It was a stretch to be able to brush my own teeth without help. My shaved head was a glaring flaw. My eyes still crossed, and my vision was still impaired enough that I had to wear an eye patch so that I could manage to focus and only see one image instead of two. Every morning and every night when it was time to brush my teeth, my mother would wheel me into the bathroom and help me get my toothbrush ready. I would look away, or at the floor while brushing. I could not stand the sight of myself in the mirror. I couldn't ever imagine looking normal again. I often wondered if my sight would ever be what it was before. I was fearful that this was the new me and that things might never go back to the way they were.
The hospital set up therapy for me five days a week. My days started fairly early and I would have therapy sessions, usually with a small break between. In the beginning, each session would exhaust me. I would go back to my room and get back into my bed until the next session, and at the end of the day, when everyone else was receiving food trays for dinner, I got a can of formula. My feeding tube was still necessary because my vocal chords still wouldn't function well enough to route my food. My choking risk was still too high to allow any food or beverage. Sometimes the amount that I was given was too much too fast. Other times they would give it to me too close to my therapy. More than one time I vomited every bit up and then some. Without warning I would get sick and create a huge mess. I always felt so guilty and embarrassed when this would happen. And afterwards, I was miserable. I would get some medication to make the nausea subside, but then I would sleep for hours at a time. I stayed so tired. The smallest exertion would leave me with virtually no energy. I slept all the time and still felt like it was not enough.
My mother would get to the hospital as soon as they would let her in. Usually I would wake up and she would be there already. She would take my dirty clothes home and wash them and bring them back all clean and hung up or folded. We would go over my schedule for the day and then she would help me get out of bed and get ready. There were times that she had to get in the shower with me to help me bathe and wash my hair. Not being able to do any of this for myself was devastating to me. I felt so helpless and embarrassed. We would then follow my daily schedule of therapy and napping. When visiting hours were over, either my mother or sister would help me get into my pajamas and brush my teeth. Then they would help me get into bed before they left for the evening. Night time was the hardest. Once my family left and it was just me I would try to go to bed because I couldn't stand being left by myself in that place.
Once the nurses made the night time rounds with my medicine I usually went right to sleep because they gave me a sleeping pill.
Therapy for me was Occupational, Physical and some Speech therapy. I had to relearn so much. I had to learn how to walk again. I felt as if I was a shaky toddler. Once I was able to stand up from my wheelchair, I graduated to using a walker. At first, just walking a few feet was a miracle. With each day that passed I was able to go a little bit further. After a few weeks, I was doing laps throughout the hospital. I wanted so badly to be able to walk with no walker, no gait belt, just like I did before. I had to learn coordination skills again. I had to do things like picking beads from putty, coloring pictures, doing puzzles, stretching my arms to place rings on a rod. I had to practice standing at a table for as long as I could, which was not an easy chore. I would ride an exercise bike, and use equipment designed to exercise my upper body. I would practice throwing a ball and catching it. In speech therapy I did voice exercises to work on my vocal chords to try to get them functioning again. I would practice memory exercises to test my memory, and would be quizzed on mathematical questions. I struggled with these at first. Then one day, I was allowed to try to eat something. I would be rewarded for my work with pudding. Little bites and hard swallowing at first, but it was long overdue. I was not allowed to have any food outside of therapy so I began to look forward to these sessions. Friends and family would visit me frequently, and I was so grateful for them. However, I remained embarrassed by the way I looked and the things I could no longer do.
One day I attended a sort of support meeting for stroke victims. It was required and I did not want to go at all. My sister and my cousin took me down to the dining room, and I sat slumped in my wheelchair wearing a frown and my eye patch. The guest speaker was there to talk about his experience with stroke. He had had one but he looked normal. He was back at work, and even driving a car. I was jealous and wanted so badly to be normal like him. He talked about how hard it was to get back to where he was but insisted that it was possible. After the meeting he came up to me and told me that he knew my mother. He had worked with her at the job she had before she was laid off. He looked me square in the face and told me that I was going to be just fine. He knew it. I wasn't so sure.
With each passing day, I tried to do a little more for myself, with supervision of course. Sometimes I would say "let me do it". Most of the time it was a sloppy effort, but there was so much I had to learn all over again. When I was admitted to rehab, they asked me what my goal was. I simply said that I wanted to get back to normal. When I made that statement it seemed almost impossible. I knew that there as a lot of work ahead of me. At the time I didn't have a clue how much. My therapists were all so nice and so patient with me.
I could only do a little at a time. I had to wear a gait belt and it was a tad bit humiliating. It was like a dog wearing a collar. Or those kids you see wearing a leash at the mall. It was for safety, but still I hated it. It was for my therapist to hold on to since my balance was so wobbly. They each told me that I would get back to where I was before my stroke but I didn't think it was possible. I wasn't myself and feared I never would be. My speech therapist and her assistant made me laugh every day we met. They told me I was funny, and for the first time in weeks, I felt a sense of my old self. I was still stuck with the eye patch. I got a lot of teasing about that stupid thing. I tried to joke and smile about it, but it was just as embarrassing as the leash.
I still remember the day I started to try to walk again. Up until then, the most walking I had done was when someone helped me from the bed to my wheelchair or from the wheelchair to the potty. My family and friends would come throughout the day to visit. If I was in therapy they were able to come observe. First it was a few steps, with a little shuffle to go with it. One person, usually my mom, dad or sister would follow behind me with my wheelchair, and my therapist would walk beside me while I held on to the walker and she held my gait belt. I would walk as far as I could and then whoever had my chair would come up when I needed to rest. Walking sixty feet was such a huge deal back then. Every day I would try to go farther and when we measured and got a bigger number than the day before it was a small victory. Eventually I was doing laps.
Soon into Speech Therapy it was time to do a test to see how my vocal chords were doing. If I did well on the test I was promised food and drink. The feeding tube was getting very old by this time and I just wanted something to drink. I dreaded this test more than anything. It was the same tube up the nose test they did in Little Rock. The camera recorded how my chords swallowed when given different foods. They would give me pudding, water, graham crackers soaked in milk and other things. When I ate some of the foods I started coughing. I knew I had failed. My chords were reacting better, but not well enough to start eating. Another defeat.
I kept plugging along. Each day my doctor would come visit me and tell me that I was doing great and to keep up the good work and my therapists would push me a little harder than they had done the day before. I was trying to use mostly my walker by this time but still needed a lot of help getting things done.
During my stay in rehab, my Grandmother died. The day before her funeral I had one of those episodes of nausea and I was completely and totally exhausted. I had gotten permission from my doctor to leave the hospital long enough to attend her funeral. After my episode I just didn't feel up to going. Plus, I didn't want to be such a burden to the rest of my family. I didn't want them to be worried with looking after me when they were there to say goodbye. My cousin also had her first child. I felt like I was missing out on so much.
My speech therapist announced one day that I was finally allowed to have my first real food since I had arrived at rehab. When I first got there they took away my permission to have popsicles so I was in heaven when my therapist brought me a bowl of mashed potatoes. I ate them slowly, and did my swallowing exercises. Every bite was better than the one before it. I had forgotten what "real" food was like. I was allowed to start introducing real food back in my diet but still had to use my feeding tube. I finally felt like I was going to get to go home when my mother was trained on how to feed me through the tube.
I was getting closer to being me again. I paid my bills online for the first time since my stroke. With help, I was able to balance my checkbook. I was able to text message again, and with that my life line to the world had been restored. Things seemed normal. I was ready to go home.
Only, like when I left Little Rock, going home didn't really mean going home. It was decided that I would need to stay with my mother for a few weeks. My uncles worked with my mom to get her house ready for me. They built me a ramp since the stairs were too hard to use. They got the bathroom set up for me to use. And helped get my grandmothers hospital bed in place for me. I was discharged and felt like I had been freed from prison. I was so appreciative for my new surroundings but I missed MY home. I missed my cats. My neighbor had been caring for them while I was away. My mom continued to take care of me. She cooked things off the approved list and feed me using my tube at night. She helped me bathe, and all of the other things she did in the hospital. I had outpatient therapy three days a week. We would go for three sessions each trip. And then one by one, I was able to stop. By the time I was only seeing one therapist per trip, I could see the light. Of everyone other than family that encouraged me, it was that therapist that made me believe I could do this. I remember the excitement on her face when I proudly showed her one day that I could now lift my arms up over my head. She was just as excited as I was. Another small victory I had was being able to blow dry my hair by myself. That insignificant task brought me to tears. I was visiting my apartment about every other day. We would go over and feed my cats and scoop their litter box. When I was there, I would fantasize about the day I could truly come home.
After about a month of staying with my mom, my doctor said I could go home. I was still having double vision so I couldn't drive. My mom would come pick me up and take me to therapy on the days I needed her to. She would drive me to my appointments or to the store. The day I came home I still had to depend on my walker, but I was HOME. My cats and I were perfectly happy just hanging out. Since I couldn't drive we were confined to my apartment. I had been away for so long though, that it was fine by me. I missed my babies.
By the time outpatient therapy was over, I was walking without assistance. I no longer had double vision. I was able to start driving again. I could cook and clean and do my own laundry. My feeding tube was removed. I had my independence back and it felt so much better than I ever thought it could. I lost my job as a result of my stroke, and that's okay. I have gained a lot more than I have lost. I can never thank my friends and family enough for being there for me. I wouldn't have bounced back if they hadn't been there by my side the entire time.
To look at me now, you may never know the path I have been down.
Chances are if I didn't tell you what happened, you couldn't ever begin to guess how close my brush with death really was. My memory isn't as great as it once was. My balance gets shaky if I get tired. I do get tired very easily now. There are a few things that are still difficult for me, but for the most part I can do everything I did before I had my stroke. I am a survivor.
When people find out what happened to me the response I usually get is..."I don't know how you did it. I would have given up!" my answer is simple. I didn't know I could...