On warm summer day in July of 2005, the side of my face went numb. Little did I know that day would change my life forever? The weeks leading up to that day, I was having difficulty with my balance. I chalked it up to my sinuses. Then I had a severe migraine headache. Again, I assumed it was due to my sinuses. I was suppose to drive two hours away to a meeting when I woke up with the numbness. I decided it was time to have it checked out. My husband took me to the hospital and they told me it was probably the result of a sinus infection and sent me home. Over the next few days, I got progressively worse. The year prior to this, I had lost my grandmother, nephew and father.
My parents had moved out of the home I grew up in and into a bigger house so they could move in my mom’s mother. My grandma found out shortly thereafter that she would need dialysis three times a week. My dad had cancer and while my mom was taking him to get his chemo treatments every day, my brothers and sisters (there are seven of us) took turns taking grandma to dialysis. She fell and hit her head in November of 2003. She had surgery to stop the bleeding in her brain but never fully recovered. She passed away two weeks later on November 18, 2003. My father had been battling cancer for a few years. First, he battled throat cancer and eventually had surgery to remove his voice box. The day my parents came home with the news that my dad’s cancer was in remission again, was also the day that grandma fell. After a brief remission, they found an unrelated cancer in my dad’s lung.
On September 24, 2004, we lost my 27-year-old nephew, Jason, suddenly. My father’s second bout with cancer was progressive and his health steadily declined soon after my grandma passed away. My sisters, Wendy, Lynn and I were with my parents at our cottage, for what we all knew was dad’s last pontoon ride around the lake. While we were still on the boat, my husband called my cell phone to give me the grim news of my nephew’s passing. I was stunned! How could I possible tell them what had happened! They all knew by the look of terror in my eyes that something bad had happened. At first, I couldn't bring myself to say the words out loud. It was as if it couldn't possibly be true! It was with disbelief that I told them.
We finished the ride with barely a word between us. It was surreal but the hardest part of the day was yet to come. My sisters and I jumped in the car as soon as we got to shore and drove to be with my brother, John. My two brothers, Mike, David and my younger sister, Joy were already with him. Mom and dad stayed behind to close the cottage up and to share their mutual grief alone before returning home. We were all in shock. The ride home was a blur. Several years earlier, at nineteen, my brother’s oldest son, Brandon, was injured and had been a quadriplegic since. He was sitting with that son, and two other sons, Ryan and Nathan, when we arrived. Joy and I sat with him that night.
Having watched him grieve so deeply, knowing there was nothing we could do, I felt completely helpless. Two months later, on November 17, 2004 just 364 days after we lost my grandma, my dad passed away too. 2 My parents were everything to me. Dad’s hugs were legendary. His laugh was infectious. Mom always kept everything together at home. My parents would always spend time alone when dad got home from work. We never bothered them. That was their time and we all respected it. My dad worked hard so they could afford to send all seven of us to catholic schools, mom had a full time job cooking, cleaning, shopping and keeping us all in order so everything would be peaceful when dad got home. My mom would have the house vacuumed and straightened when dad walked through the door at the end of the day. She would have all of us accounted for and then she would “put on her face” (makeup) for dad.
I remember her telling me once that when she would have, in her eyes, an unproductive day, my dad would say, “Barbara, if you woke up with seven kids and you still have seven kids when you go to bed, you have done a full day of work.” They were so in love with each other. They met when my mom was just fifteen and he was eighteen. They got married when mom turned eighteen and they started our family when she was twenty. They were married for over fifty years. They were a team and their love was eternal. When my dad passed away, it left a huge gaping hole in mom’s heart. Having lost her mother, grandson and husband within the span of a year, we all knew that it was up to all of us to be there for her as much as possible. I couldn't stand the thought of her feeling sad or alone, ever. Mom never showed that side of her to us. She kept up a positive attitude and had us laughing as often as possible.
I remember the first day at the funeral home when dad was laid out, we all gathered around to say a prayer and without a thought in our heads we all began “Bless oh Lord and these thy gifts”!! Some of the fondest memories of my dad always had something to do with food, so naturally we started to say Grace! I guess that was dad’s spirit lightening us all up. We shared a much-needed laugh at that moment. My husband is an alcoholic. He was a functioning alcoholic so it was easy to hide. We both had great jobs, a nice house and never had to worry about money. We were not extravagant people. We never wanted anymore then we needed. The first five years of our marriage, we were never apart and everything seemed to be going well. I had a job that allowed me to work from home most days. My office was two hours away and I would make the trip a couple of times a month. As I grew with the company, I began to travel. At first it was around the state, and then around the country. The more I loved my job the more my husband resented it and me.
His drinking got increasingly worse. He was skipping work to drink all day. I never wanted to tell him when I had a day off because I knew he would call in sick, start drinking at 8 am and not stop until he passed out that night. He began emotionally abusing me. I remember thinking if he would just hit me and leave a scar someone would notice and then I could divorce him. He was at his worst when I was dealing with all the deaths in my family, but everyone was dealing with their own grief and I didn't feel comfortable telling them what I was going through. He told me, two weeks after my dad passed away “to get over it!” 3 I got sick the summer after my dad died. After we got home from the hospital, the first time, my husband was not concerned and he decided to go to his father’s cottage for the weekend. He never called to check in on me while he was gone.
When he left Friday afternoon, I knew something was terribly wrong with me. On Saturday, my sister Wendy asked if she could come use my washer because hers was out of commission. We decided we would go to church with my mom and our two other sisters first. I was feeling lightheaded. My balance got worse by the hour and I felt like I had a line between the left and right side of my face because the right side was so numb. Over the last year, I had lost a lot of weight and looked terrible. My mom and sisters talked about taking me to the hospital that night but decided I should wait until Sunday afternoon so I would be there first thing Monday morning when the doctors made their rounds.
My husband didn't think it was necessary for me to go back to the hospital, so my sisters took me instead. The hospital admitted me for testing Sunday afternoon. On Monday they took blood, gave me a lumbar puncture, an electrocardiogram, and MRI. When all the text results came in, they told me I had MS. The first thing I said was “okay, what do I need to do? I was just happy that they knew what was wrong and I wanted to know how to manage it. Little did I know things were about to get much worse. I wanted to go home and the doctor said if I could walk down the hall unassisted, and have a physical therapist come to my house to make sure I could get around safely, they would release me. I was able to make it down the hall and then we called the physical therapist and asked her to meet me at my house. I went in on Sunday and they released me on Friday.
My husband and his Aunt Patty (she had become my best friend) came to bring me home. When I got in the truck, I began to have a laughing fit. It almost seemed as if I was drunk! When I opened the car door when we got home, I fell right out laughing my ass off! Neither one of them knew what to make of my bizarre behavior. They picked me up and got me in the house. Shortly thereafter the physical therapist showed up to check out my house. Patty had left, and my mom and sisters had come over. By then my husband was already drinking. The physical therapist was horrified at my rapidly declining condition and said I could not stay in my house. I was still laughing hysterically, but to add insult to injury, I was in my bed and could no longer control my bladder. That was the last straw for my mom and sisters, but my inebriated husband said, “she’ll be fine, let her sleep it off!” They called Patty and she confirmed what they were already thinking and told them to get me back to the hospital ASAP.
Joy literally picked me up and put me in Lynn’s car and off we went back to the hospital. 4 When we got to the hospital, a guard met us at the ER entrance, they got a wheelchair for me, and my sister went to park her car. When she got back, they had given me paperwork to fill out and that was when I realized I could no longer write. Lynn filled everything out for me and then we went into the ER where we waited to see a doctor. I had to go to the bathroom and really wanted to go home. As the time wore on, I became increasingly agitated. I also suffer from chronic pain and everyone thought I might have taken too many painkillers so they had my blood tested. When they couldn't find any potential drug impairment, they knew something was very wrong. A nurse came in and told me if I could make it to the bathroom on my own I could go home, but when I went to stand up, I fell flat on my face.
I had no control over my legs! They admitted me immediately. The next couple of days are sketchy at best. I remember they started me on heavy doses of intravenous corticosteroids. They are a normal course of action for MS; however, I became increasingly worse. Communication was extremely difficult. I asked them, as best as I could, to take me off them because I thought they were making me worse. With MS, I should have been getting better, not worse. They switched me to the pill form to wean me off them over the next several weeks. My body had given out on me, but the thinking part of my brain was on overdrive. When it appeared as if I was showing signs of improvement, they moved me to the rehabilitation floor so I could learn to take back control of my body. My mom came everyday to help me eat lunch and dinner. My siblings visited often during the next couple of weeks. Joy was a beautician so she did my hair and kept me looking a bit more like myself. Lynn was an occupation therapist, she helped kept me moving. My husband rarely visited. I remember mom, and my sister’s were visiting, and my husband was suppose to come later that evening so they decided I needed a shower. A shower was a hard thing to do with a person who is all dead weight. When we were in the middle of the shower, I felt horrible. I had absolutely no control over my body and I felt completely helpless. I started thinking, why don't they just drown me right here right now because I can't live like this! That was the only time I let my circumstances get the best of me. It is strange but I never questioned what was happening to me.
I never blamed God or anything; I just wanted to get back to my life. I figured it was Gods way of telling me to shut up and listen instead of trying to control everything in my life. I had no choice, so I listened, to everything and everyone around me. At this point, I looked like a deer caught in the headlights. I looked mentally impaired and that is exactly how I was treated by people all around me, doctors, nurses, even my family and friends especially my husband. Truth was, I was fully aware of everything and I was taking it all in. I had many conversations in my head with myself during that time. I would catch a glimpse of me in the mirror and I would think, oh my god! You look like a fool! Sit up! Get that stupid look off your face! No wonder everyone is acting so strangely around you! From that moment on, I refused to look at myself in the mirror while I was recovering. Then my conversations with myself took a turn. My family has always dealt with bad situations through humor. I kept trying to crack jokes, but they always ended up coming out like gibberish. I wanted so badly to get through to someone to let him or her know I was still in that mess of a body. I finally figured out a way to get through to my mom.
At this point, I didn't have much control over my hands but I managed to get my mom’s attention to show her I could still flip the bird accomplishing two things at once; I could move my fingers and that I still had my sense of humor. After that, she made me flip the finger at everyone who walked in door! When I went to physical therapy, they too treated me the way I looked. I knew that somehow I would have to get through to them too. I wanted them to know I was aware of everything that was going on around me. On a Friday, I heard two of them talking about their weekend plans. One of them was going to babysit for the other ones kids. On Monday, when I was brought down to physical therapy, my speech was getting better and I manage to ask how the kids were for her while she babysat over the weekend. She was visibly shocked! She said, “You knew that I babysat over the weekend?” I told her, as best as I could, that I was there when they were talking about it. Then I got out “I wasn't like this two weeks ago!” something I would repeat a lot. I wanted them to know I still had a sense of humor. The therapy lasted an hour. I noticed that the clock in the hall was fifteen minutes fast, so forty-five minutes into the session,
I said “all done” and the girls said “not yet.” I started pointing to the clock in the hall and they started laughing. Finally, I got through! I was so glad to hear laughter! Most people would look at me with so much sympathy. I was slowly getting through to everyone that I was in there somewhere! It took some people longer to get that, like years in some cases. 5 The worst part of my stay was going to the bathroom. I was stubborn and refused to have a catheter put in. On my medical record, I was listed as a three-person transfer, which meant at 114lbs it would take three people to get me out of bed, into a specially made chair and into the bathroom. They would wheel me in and get me situation on the toilet, give me the call cord to signal them when I was done, and then they would close the door. There I was, in the dungeon, as I began to refer to it. I could barely sit up on my own but I just refused to have that one thing taken out of my control. I realize now how hard I made it on the nurses, which is probably why they would wait so long to get me when I would pull the call cord. It is very possible that they came within seconds, but at that point, in my illness, seconds seemed like minutes, minutes seemed like hours, and hours like days.
My family was just starting to heal from losing my grandma, nephew and dad. The last thing I wanted to do was add my illness to their stress, so I did my best to stay positive. I was happiest when I heard people laughing but inside I was scared to death. I thought I was handling everything well until one day they had a psychologist come in to see me. He asked if I had been crying at all. I said no, but then my roommate spoke up and said I had been crying in my sleep all night. I had no idea! I guess when I was relaxed and sleeping all my fears would show themselves. As the days wore on, my 40th birthday was approaching. My goal was to be out of the hospital by then. Just days before, there was a rumor going around that one of the male patient on my floor was a peeping tom. Most people found it amusing. I was terrified! If someone came in my room and tried to attack me, I was helpless.
I was so scared that I convinced Lynn to spend the last night with me. On August 8, 2005, the day before my birthday, they released me I was still unable to walk or get to the bathroom on my own, but I was determined not to spend my fortieth birthday in the hospital. I remember Lynn asking me where I intended to go when I was released. As much as I didn't want to cause anymore stress to my family, I wanted to get out of there more. I told her I could stay at my mom’s until I was back on my feet, literally. I knew it was going to be hard on everyone but I planned to work twice as hard with my in-home therapist, so I could get back to my life and out of everyone’s hair as soon as possible. When the doctor came in to release me he asked me if I was sure, that is what I wanted to do? I explained that my mom already had a twin adjustable bed from when my dad was sick. I told him the house was a ranch, and that I had six brothers and sisters that could help care for me.
My brother, John, had been caring for his son, Brandon, who was a quadriplegic. He was experienced with transfers and he was living in the house with my mom at the time. Lynn was an occupational therapist, and Joy had taken care of my nephew as well. My husband was not included in that scenario by then. Because I had made such a big deal out of being home for my 40th birthday, he reluctantly released me. I think he assumed that I would be back, but I was never admitted again after that day. I remember a social worker coming in and telling me, with a diagnosis of progressive MS, as oppose to relapsing remitting MS which can go into remission for years at a time, I would be back several times over the coming years. I just simply said, “No I won't” Moreover, I meant it! 6 I learned a lot from my stay at the hospital: One: I learned not to treat people by the way they look on the outside. Each person has a heart and soul on the inside and they deserve to be treated with dignity and respect. Two: Not to take your own life for granted because you could become invisible to everyone around you in a heartbeat. (People would do things in front of me they wouldn't be caught dead doing in front of anyone else. For example, a volunteer worker who causally passed gas in front of me and looked around to make sure no one else heard. Apparently, because of the shape I was in at the time, she thought I wouldn't notice. News flash, I did!) Three: Be your own advocate. Do not be afraid to speak up if you have questions. (Find a way to make people hear you even if your communication skills are impaired) Do not assume the doctor is always right. I had so many doctors coming threw my room it was crazy! One doctor would prescribe what I needed, and another would come by a few hours later and change it without consulting the first doctor. I also learned that they would continue to take your blood everyday even if it is not medically necessary.
When I finally did ask them if it was medically necessary, they stopped. Four: Be polite and respectful to the people who are caring for you. The nurses, techs, volunteers, therapists do not get, the much deserved, credit to which they are entitled. Five: Never give up the fight! Even when you feel the odds are against you and you are all alone, fight, fight, and fight! Never give into your illness. Never ever, give up the fight! Six: My marriage was in serious trouble!
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