Lois’ Personal Brain Injury Story
Fourteen years ago, I was thirty-three years young, newly remarried just 9 wonderful months to Larry, and working as a sales and customer service rep for 15 different companies in 20 retail stores. I was happy, loved my life, and was looking forward to a bright future full of possibilities. Super-mom to our four children, Andy and L.J., aged 7, Cassy and Amber aged 5, wife, daughter, sister, neighbor, volunteer, and entrepreneur – often with too much on my plate. I was determined to do it all and do it well. And I did, or so I thought. With a capacity to remember details, and the ability to multi-task with ease, I had an abundance of energy, confidence, and a positive outlook. No challenge was too great, for I thrived with the sense of accomplishment from achieving my goal. However, I was not prepared for the overwhelming, life-changing challenge that I found myself unexpectedly facing.
CAUSE OF TRAUMATIC BRAIN INJURY and MISDIAGNOSIS
One sunny morning on my way to a job, I was rear-ended by a big repair truck at a high rate of speed. My car struck a pedestrian, flinging her body up onto my windshield. I lost consciousness briefly. My car was totaled from the impact of the accident and unbeknownst, so it was the same with my body and my brain. Initially, my examination revealed no apparent injuries. I was sent home with instructions that if I did not feel better in a few weeks I should follow-up with my doctor.
Along with the shoulder, neck and lower back injuries I was having tremendous headaches, disturbed sleep patterns (insomnia and frequent awakenings), extreme fatigue, extreme short-term memory problems, inability to focus and concentrate, delayed and slow comprehension, communication difficulties (saying wrong words and loss of vocabulary) and difficulty with performing routine tasks (such as walking off in the middle of doing something and never returning to finish). Weakness on my right side, clumsiness, and a right lean caused me to trip and fall often. I experienced offensive odors of burning rubber and dog poop smells and heard ocean sounds in my ears. I was diagnosed with post-concussion syndrome and was led to believe that my brain injury would repair itself within 6 to 9 months. At the time, that was good news to me and my family!
REALIZATION and ACCEPTANCE of Living with a Brain Injury
After 6 months, I attempted to return to work at half of my previous work schedule. I was making mistakes, missing deadlines and couldn’t get my jobs done in the time frame allowed. Headaches increased while my level of functioning continued to decrease both at work and home as I pushed myself towards the 9-month mark. Seeking answers, I switched doctors, was diagnosed with depression and referred to a neuropsychologist. It was at that point I was tested and diagnosed with a minor brain injury. I went through all the various stages of learning what I could about brain injury and frantically searched for the magic doctor or magic pill to fix me. I had denial that this was a permanent condition, panic and deep anger (realizing that there was no quick fix, perhaps no fix at all), severe depression (wanting to go to sleep and never wake up), feeling like such a loser (since my self-esteem came from all the things I used to be able to do well), extreme frustration (unable to perform simple tasks in the manner I was accustomed to), and of course, fear (that I would lose my family, either because I was an embarrassment, or a burden). Still, I had the determination to regain all of my previous abilities and restore my life.
It was at least 2 years before I would start to accept that I was going to have to learn to live with a brain injury and that I would never be the same young woman that I loved, admired, and deeply missed. It took even longer for others in my family to come to that same acceptance. As long as my husband, mother, sisters and brothers saw me fighting to regain my abilities, they were filled with hope and were in denial that this was a permanent condition. They believed it would only be a matter of time before my determination and drive would restore my health and abilities. Outside of my family, it was often perceived that because I no longer worked outside our home, I was lucky. It was as if my challenges of living with a brain injury were the same or even less when compared to the challenges of full time employment. As I grew tired and frustrated trying to help people understand what living with a brain injury means, I found myself little by little accepting that it was useless. Brain injury is still very misunderstood, even by many professionals in the medical field. The less I talked about my difficulties and limitations, the more it reinforced to others that I was doing well and had recovered. And so much more, even today.
RECONNECTING with GOD
Feeling alone, miserable and certain that my life no longer had value or purpose, I felt scared about my future. I feared that I lacked any potential to make something of myself, and worried that I would turn out to be an embarrassment or a burden to my family.
Overwhelmed and confused, I cried out, “God help me. I don’t know what to do!”
A short while later I received an unexpected phone call from our Pastor. “Haven’t seen you in church lately,” he said.
I responded, “I know. I’m angry with God.”
Pastor replied, “God can take it. Tell me what’s going on.”
I explained the details of my auto accident and the challenges of my brain injury. “I’ve been praying for God to heal me and restore my abilities and my life. It’s not happening,” I cried.
Pastor asked if he might pray with me. For one-split second, I thought my prayers were about to be answered. But I heard him say, “Lord, we ask you to help Lois adapt and cope.” Now I was angry with the Pastor, too! He was praying the wrong prayer! Pass on the adapting and coping skills – I asked for healing and complete restoration!
In a fit of rage, I vowed, “I will show everyone. I’ll do it by myself. I’ll work really hard at rehab therapy and I’ll overcome this brain injury.”
And so I did. I showed everyone…just how mean I could be. “Mean as snot” was how my husband Larry described me. Larry noticed what I refused to acknowledge. Therapy was teaching me skills to manage my deficits, and it was a painfully slow process. He came to me and asked, “Lois, are you going to let your brain injury ruin every day?”
I gave his question careful consideration of three seconds, “Yes, I think I will.”
Larry responded, “Well, I don’t think you have to.”
How could I accept that my life was forever changed? But, I was too weary to keep resisting my new reality. I was tired of acting angry and sick of feeling sorry for myself. So, I surrendered the fight. I cried out to God, “If you could help me to feel good about who I am and feel happy, that will be good enough.”
I started to hear a “little voice” in my head, helping me remember and guiding me through my day. My husband cautioned me, “I would use careful consideration about who you tell about the “little voice” in your head. After all, you have been diagnosed with a brain injury.”
I knew my little voice was The Holy Spirit. Each time my “little voice” helped me I would stop and say, “Thank you, Jesus.” We laugh about it now. Whether you refer to your “little voice” as the Holy Spirit, intuition, sixth sense, gut feeling, or following your heart, deep within each of us resides an internal wisdom.
Connecting to my “little voice” was one of the treasures born out of the trials of living with a brain injury. I no longer felt alone or afraid, because I knew – for those who need a little extra help, God always provides it, if we ask.
My brain injury has affected my relationships with everyone I know and love. My children were so young when I was injured that they don’t remember me any differently. That makes me sad. My son, Andy , largely expressed anger and frustration with me about my areas of confusion (and justifiably so, he was just a little boy). A good example of this was the day I was supposed to have him to the baseball field by 5 o’clock and I thought I was to pick him up from his friend’s house at 5. Andy was benched the first half of the baseball game because of this. He was also impatient due to my constant repetitive questions (just how many times do you have to tell your mom that you don’t have any homework?), disappointed when I failed to do something (lying in the sick room at school waiting for your mom to come and get you, she forgets where she is supposed to be going and ends up at the chiropractor, then the hairdresser, all the while wondering, “Why is she taking so long to get here?”), embarrassed when I was tired and acted goofy and inappropriately (the counselor determined that when my brain became exhausted, I would act like someone who had been up all night at a slumber party. In other words, I was the only one who thought I was funny. She advised that we come up with a signal for my family to give me to tone down my hyper-active behavior. The first time my son raised his hand to give me the “signal” I gave him a high five. Andy told the counselor, “I got reprimanded.”) It is not a good feeling to act immaturely, and not be able to stop yourself from embarrassing your family. I often felt that my son looked at me as pathetic and defective. Not realizing at that time, because I was over sensitive to my shortcomings, I would over-react to looks or comments that might even hint that I was “stupid” and always take them very personally.
My daughter, Cassy, became my protector and suffered from separation anxiety by always worrying about me. If I were late to pick her up from dance class, she would panic thinking that I had been in another auto accident. I added to her fears and anxiety because I was consistently late and sometimes didn’t show at all. For a period of time after the accident, Cassy felt it necessary to be with me at all times to prevent anything else from happening to me. She became my helper, taking it upon herself to remind me of when and where to turn when I was driving and would write me notes to help me remember. Unlike her brother, Cassy would enjoy my moments of silliness. One breakfast when I had asked Andy a question (probably for the fourth time), he held up his hand and said, “Speak to the hand , because the ears don’t hear”, a saying very popular among middle-schoolers at that time. I don’t know where these responses would come from, but I turned my back to him, lifted up my nightgown and said, “Speak to the cheeks”. Andy was disgusted! Cassy burst into laughter, spitting cheerios all over the table. I have always felt loved and accepted by my daughter, even when I would embarrass her. I introduced myself to her middle school counselor as Cassy’s Dad. She gasped in horror as I stood there totally unaware.
My husband’s children, L. J. and Amber would stay with us for two months each summer. They were used to living in a house where there was no structure or routine. After my accident, I had to develop strict structure and routine, including the duties of being a mother. I actually had a chore chart that helped me keep track of baths and hair wash days. I had to develop a system of who’s turn it was to ride up front in our van and who’s turn it was to do which chore. I had to make a note of when allowance was paid because the boys would try to get extra allowances. My children were used to “our structure”, however my husband’s children felt that I was too strict and would argue with me. L.J. used my poor memory to his advantage whenever he could (largely by responding to my requests or questions by answering, “I can’t remember”).
HIGH NOISE AND HIGH ACTIVITY ENVIRONMENTS and ANGER
I could not tolerate high levels of noise or activity without rapid cognitive wear-down or confusion. I remember the boys arguing during a game of chess and many times yelling for me to solve the argument. About the third time, I stomped over to them shouting like a mad-woman and threw the game pieces all over the floor. I scared them half to death sometimes throwing temper tantrums and saying swear words. My kids would race to see who could first tell my husband how many times they heard me swear each day. Larry would reprimand me and then I would say more swear words. My daughter once yelled to me from the bottom of the basement stairs, “Mom, the washing machine is going again without any clothes in it and the lid is open.” I went storming downstairs, kicked the washing machine, slammed the lid, screamed at the top of my lungs, and then started to cry. My daughter then started to cry and said, “Mommy, I’m sorry. It’s my fault. I shouldn’t have told you.” It broke my heart that Cassy took responsibility for my bad behavior and at that moment I made a commitment to learn to control my temper and clean up my language. If I had only known that over-stimulation leads to agitation which leads to rage, I would have had some insight to help me overcome my anger sooner. To maintain the concentration required to drive safely, I needed absolute silence which meant no talking and no radio playing. Music is standard equipment to most preteens, so this was an aggravation to them. In an effort to compensate the kids for their sacrifice, I bought them each their own walkman and went broke buying batteries so they could listen to their music and I could have peace and quiet in the car as well as at home. When attempting to cook a meal, I needed total silence and full concentration. I was not able to visit with someone while cooking, which meant I was off limits during that time. Even then, the dog wouldn’t eat some of the meals I made. However, Larry always ate everything I made. He would say, “Part of life is having to sometimes eat things you don’t particularly like.”
And then the teen years arrived. It is common for teenagers to think that their parents don’t have a clue. So imagine how clueless a mom with a brain injury must appear. Even worse, the dynamics of an oversensitive mom asking, “Are you calling me stupid?!” Returning for more family counseling, my teenagers were educated on how my thought processes and abilities were impaired. They were taught to take responsibility by leaving me notes, following up with reminders and adjusting their expectations of my abilities with the hour of the day. (In other words, after 4 PM your mom could start to repeat herself and her thinking processes are slowing down, so don’t expect too much from her.) Trying to help with homework was a process, since my oral comprehension was so poor by the end of the day they could rarely ask me a question that I could answer without my having to read each problem or question several times. Understandably impatient, Andy would often react with disappointment. He started to think that I wasn’t very smart, and he didn’t want me to help him. Cassy would be so unbelievably patient and sit through my slow processing. As my stepchildren grew older, they noticed my impairments and I found them making constant comparisons of me to their mother. This is something that is probably typical because they were often just making comparisons of the differences in the two households they were familiar with. However, I did not recognize this and I took their remarks as criticisms. I suffered so much heartache feeling defective and rejected, particularly by the boys. A lot of my heartache was self-imposed.
I was not prepared for the changes that happened in my relationships with my sons during their senior year of high school. Andy’s English teacher phoned, saying, “Lois, I am calling to tell you about the essays that your son has written titled, “The Person I Admire Most” and “Someone I Know that Has Overcome a Life Challenge”. In complete awe, I asked, “Could you repeat the name of the student you are referring to?” thinking that my son thinks I am pathetic, so she must have phoned the wrong Mom. I will never forget the overflow of emotion I felt when this teacher repeated Andy’s name. Andy started to treat me with compassion and understanding, and apologizing for his moments of frustration with me. He even has started to treat me with a certain caretaking attitude. My husband’s son, L.J. has shared with me that looking back, he understands me so much better now, realizing that I insisted on structure and routine as a method of survival and not control. I see him marveling at how I actually make it through each day without getting lost or hurt. He told me, “I think you work really hard and I hardly ever see you goofing off. I don’t understand that as busy as you are, you don’t seem to get much done.” I could have taken that as a criticism, but 10 years post therapy, I took it as a compliment that he sees me as determined and is in amazement that I just don’t give up. So many times I could not see past my own losses and the losses my family had suffered. So many times I could only see the effort that I was making and not the effort my family was also making. So many times I overreacted to situations and blew them out of proportion.
RELATIONSHIP WITH HUSBAND
My husband had a hard time accepting that his wife of 9 months was never going to be the same woman he had married. He, too, loved and missed the “old Lois”. The very thing that attracted Larry to me was my ability to do so many things, my never ending energy, my bubbly personality and my positive outlook. One of Larry’s biggest pet peeves is dizzy women. He was in denial for a period even longer than I was that my condition was temporary. He could see that I hadn’t lost my intelligence, so how come I did or didn’t do the things I was doing? Why was I always so tired? How could I get so confused? “Think! Watch what you are doing!”, were a few of the things Larry would say to me. I felt like he was embarrassed by my state of confusion. He never intentionally hurt my feelings but my feelings got hurt a lot. Whenever he hurt my pride or feelings, I would react by getting angry and telling him off. I gave little consideration to his loss or feelings about the changes in me. It was all about me, or so I was acting.
Larry’s job as a retail store manager was very time consuming while the responsibilities of managing the home have always been mine. While some husbands might be willing to take over most household responsibilities, the roles in our marriage were pretty traditional. We each had certain chores that we were responsible for. I don’t know that I would have allowed Larry to take responsibility for my share, at least not permanently. I think I might have been offended, assuming he thought I was incapable of doing anything. Larry did try to help in his own way. He gathered up the laundry and put it in the hamper one time (unbeknownst to him that I had just presorted the laundry into loads.) He didn’t do dishes, but offered to eat from paper plates. Larry didn’t clean house, but he rarely commented about how poorly I kept house. Neither did he cook, nor did he complain about the quality of meals I cooked or didn’t cook. His work shirts often had parts that I neglected to iron-one time it might be a sleeve, or just one side of the front. He considered it an adventure to identify what part of his shirt wasn’t ironed each day and it was a bonus if perhaps his entire shirt was pressed! Larry has always pushed me to put my health above everything, so I can be the best I can be. He has never complained about the cost of my medical care. He has been my greatest support, but he has also pushed me the hardest to get better. To this day, he can still demand more from me than I can give. We have the battle of “Quit using your brain injury for an excuse” versus “My brain injury is the reason” for some of my poor judgments. It seems that the better I perform, the higher his expectations become. I am fortunate that my husband is a kind, loving, and reasonable man. When I feel he is pushing me too hard and I communicate this to him (in my own snotty way), he backs off. He says that I have made such great strides and if I use good judgment, I function near such a “normal” level that he can forget I have limitations.
It took me five long years to figure out this next situation. My husband usually sees only the end results of my daily efforts (which have improved greatly), such as a relatively clean home, most always a decent meal and clean and pressed laundry. Then, I am meeting his expectations. Usually when he has a day off he is golfing or we are doing something recreational together. If my husband is relaxing at home on his day off and I am going about my normal daily routine, he starts observing the manner in which I am doing my household chores. He is in awe, and often asks me, “What are you doing? You seem to be having some trouble. What’s going on with you?” Or he shakes his head in amazement and laughs. This would really make me feel self-conscious around him and it usually put me on the defensive. One day I blew my stack and told him, “I’m tired of your criticisms. Today is no different than any other day. Every single day is filled with one screw-up after the next. Some days are even worse. You only see the end result and the end result is much better. But not the process that I go through to get there!” Larry responded, “Honey, you seem so normal to me most of the time and I forget.”
BEHAVIOR PATTERN OF OVEREXTENDING AND REGROUPING
Larry’s frustration with me stems largely in my taking on activities and responsibilities outside of our home to the point I neglect my health and personal responsibilities at home. I struggle with maintaining a healthy balance. The more capable I become, the more I attempt to rejoin the real world full time. My rapid wear-down from noise and high activity environments still holds me back and causes me to have a setback when I expose myself to more than I am able to tolerate. Brain injuries never go away. It takes constant effort to manage a brain injury and maintain a consistent level of effective cognitive function. I am well equipped to self-assess and self-correct my behavior patterns and adjust negative thinking with the “regrouping tool kit” I have built with years of therapy. And so it is, my pattern of regrouping, over-extending, setback with the return of cognitive difficulties, low energy, low mood, frustration, regrouping. Even though I am better able to stop my craziness and regroup before suffering a major setback, I repeat this pattern time and time again. You would think I’d learn. Each time I do this, I get warnings and my husband expresses his concern. I rarely listen to his advice. It is only after someone else says the same thing Larry does that I take notice. I will tell him that I have received some good advice from someone and maybe I need to rethink my position. Of course, he reminds me that he’s been telling me the same thing but that I don’t listen to him. I usually say, “Oh, yah?” Although this pattern is frustrating and exhausting, I still maintain that without periodically testing and pushing past my limits I would have remained static and not have expanded my abilities and increased my intolerances inch by inch.
CHANGES IN SOCIAL LIFE
As much as I still have a very outgoing personality, our social life has changed because I am not able to tolerate social activities easily. Evenings can be a challenge since my comprehension is much slower and my wear-down is more accelerated as the day progresses, particularly in high noise and activity environments. The more tired I am, the more sensitive to noise I become. My noise filtering system fails. I think part of it is a pride thing-I don’t want people to see me in a bad way. If I have evening plans, I have to give up a part of my day to rest so that I can stay up with the crowd. Even then, my thought processes are much slower in the evenings. It is an extreme effort to have intelligent conversations and the possibility for me to act socially inappropriate is much higher. Events that contain a lot of noise and activity like a basketball game wear me down extremely fast, to the point of severe headache. We rarely go to the movie theater in the evening. Following the plot of most movies that I watch even during my peak comprehension times is a challenge. Larry has to constantly answer my many questions during the movie. I am proud to say that I now have a strategy that enables me to go to the restroom in the middle of the movie and remember which movie theater to return to. Now if I could find my way to the seat beside my husband and not sit down and cuddle up next to another man, that would make my husband happy. You can only expect so much from this girl!
Intimacy is an important component of every healthy marriage. It is hard to be “in the mood” when so tired. I know that this is a woman thing-men are always in the mood. In fact whenever I am having a really bad day, my husband tells me he knows just what I need (the male cure-all for everything). But sometimes he’s not too far from the truth. A therapist once told me that our body will shut off appetites it can live without, in order to preserve energy for life sustaining functions. Perhaps, people can survive without intimacy, but marriages suffer without it. If it takes resting and planning a romantic time or if it’s a little love in the afternoon, I have learned the importance of not neglecting this part of our marriage.
Communication can sometimes be a chore. Larry says I don’t remember to tell him things and that I repeat myself more than is necessary. So I say, “Since I forget to tell you some things and I tell you other things twice, that makes it even!” He often gets irritated (and confused) when I say one thing and mean an entirely different thing. Sometimes I argue, “Maybe it’s not the way I say things, maybe you have a hearing problem!” You can see that occasionally I have “attitude”. I have learned a few tips to help me, such as constantly watching the expressions of those I am speaking to. If I notice they have a confused expression, I know I am not expressing myself properly and it is a cue for me to find a quiet spot to settle my brain. I always repeat instructions back to another. I never ask them to repeat information back to me because I can comprehend information incorrectly a second time. However, if I repeat the information back incorrectly they will correct my error. In any event, I get frustrated too. I rarely get the benefit of the doubt if there is any miscommunication. It is automatically assumed that I am the one that made the mistake. I often repeat myself, wanting to make sure that I gave correct information. This can be interpreted as I am treating someone like they aren’t listening to me, or I am repetitive, annoying and find I am being tuned out.
MONEY MATTERS and MEAL PREPARATION
I have gotten myself into trouble at the mall more than once since I can be impulsive and have used shopping as a medicator. I must have an exact plan and precise shopping list before going to any store. So, do I? Always! Do I always follow my plan? No. I am easily distracted. One of my biggest downfalls is overspending at the grocery store due to lack of meal planning. The mix of groceries I have on hand is not well coordinated. To prepare a meal plan involves taking into consideration the work and activity schedules of my family. It takes a good deal of time to coordinate and plan a week’s menu and then prepare a shopping list. Even when I put forth the time and effort to pre-plan and shop accordingly, I would find that I might not have enough time, energy or ability to concentrate after the drain of the day and could end up not cooking what I had planned. I seem to have better success with planning meals one or two days out, and making short runs to the store. We have several soup and sandwich days, take-out days, and “everyone’s on their own” days each month.
RELATIONSHIP WITH MOTHER
If there is one thing I can count on, it’s my Mom. She is one of my biggest supporters and tries her best to always be there for me. She is available to lend an ear when I’m angry or depressed, dry my tears when I cry, fold towels, vacuum, clean bathrooms, or wash dishes (she’s washed more dishes at my house than her own.). She never quits. In fact if someone is being hard on me, she always defends my honor, even if I’m partly to blame. It was difficult for my mom to accept that I was not going to be able to completely regain my abilities. I remember her telling me several times, ” Lois, I know your determination. You just have to keep trying and you will overcome this. I know you can do it.” I still remember the day I told her firmly, “Mom, I keep trying to do things the same way I used to but it isn’t working. It’s time to consider that I may never be the same person I was before this brain injury. Maybe I need to work more on figuring out a new way.” We both cried that day. My mom is my biggest advocate and my best cheerleader. She knows best how hard my days still are. She always makes me feel that she couldn’t be more proud of my accomplishments. This can set the atmosphere for unconscious jealousy of my siblings because of the additional attention and her protective nature towards me. What Mom struggles with the most is my inconsistency. She has her own expectations of me, and I let her down sometimes. I take on things that wear me down and I’m not always available when she would like me to be.
RELATIONSHIP WITH SIBLINGS
My relationships fluctuate with my two younger sisters and two younger brothers. At the time of my injury, all of my brothers and sisters had their own families and were living on their own. Initially, I believe that my sisters and brothers saw glimpses of change in me, but since they did not witness my daily “dysfunction”, they never fully understood the difficulties, challenges, and the loss I felt. My brain injury is not something that we talk about openly. I feel it is perceived as something of the past, which has been resolved over time and no longer exists.
At times, I don’t feel that I am viewed seriously as having much potential outside of taking care of my family and household. When I attempt to take on something more and struggle in the process, I am more often urged to give it up rather than encouraged to continue. When I have suffered a set back or am going through a period of regrouping, I sense their confusion and frustration with my ups and downs. I think what hurts me the most is their lack of understanding of what it means to have your health and abilities forever compromised and the deep hurt and sadness over the loss of choice for future plans. The longing to pursue and experience a life that is more than daily survival never goes away. My never-ending search to find nutrition or medications to improve my health and abilities and my attempts to find my life purpose have been a source of annoyance. Instead of feeling hurt from the “Now what’s she trying or doing, and I wonder how long this is going to last?” impression I get, I long to hear them say, “I am proud of you for your determination, and I believe in you.”
I have had several miscommunications with my brothers and sisters for which I rarely get the benefit of the doubt. I have been perceived as a “know-it-all” from times I have shared what I was learning in therapy. For as many times as I have been avoided or hurt by remarks insinuating that I am responsible for the challenges I face, I have also received love and support when I was going through a rough period. For support, my baby sister called me everyday trying to cheer me up when I was battling a deep depression and a brother encouraged me to take up a hobby and even paid for my quilting classes.
Does this sound like brothers and sisters who don’t care? I hope not. It is not lack of caring or trying on their part, but a lack of knowledge and training to understand the inconsistencies of brain injury. Brain injuries are family affairs, yet the extended family are rarely exposed to opportunities to learn about the many faces of brain injury, nor have the time due to the demands and challenges of their own lives.
When my nieces and nephews were younger, they used to make comments like, “How come you don’t have to work? I wish my mom had a brain injury so she wouldn’t have to work.” Or they would see me acting silly and say, “I wish my mom had a brain injury so she could be funny like you.” They didn’t understand. I have a sister that lives in another town. We took a trip together a couple years after my accident. That was a real eye opener for her. As close as we were, and as often as we spoke on the phone; she didn’t come close to realizing my impairments until she spent just three full days with me. Even after her realization, she quickly forgets the impact of what living with a brain injury encompasses. The few times my sister became ill from a virus and was not able to function at her normal level for a few days, she thought of me and for a brief moment could relate to how it must feel to struggle with low energy and lose your ability to care for your family or to work. How quickly things pile up when you are feeling this way. I get very nervous when my husband’s family visits us from out of state. I am self-conscious that they are observing me and I feel uncomfortable with what they see. Since my relationship with them is largely on the phone, it is easy for me to appear very normal until they spend a few days with me.
Many previous friendships fall apart because friends or acquaintances may never fully understand or even believe the brain injury since they do not see any “dysfunction” or real difficulties. I used to try to convince doubters by sharing examples of my daily screw-ups, and I would often get the come back, “I do that and I don’t have a brain injury!” Or, “Gee, I must have a brain injury, too!” The demands and challenges of life in general are so great, not working outside the home is often interpreted as a cure for my disability. “You are so fortunate to not have to work. You have your whole day to do what you need to.” They do not realize or understand that it takes my entire day to do so little.
New friendships can be even more of a challenge initially. I am often told by people that I meet for the first time that I don’t appear to have a disability. Some don’t believe I have a brain injury at all. This used to make me feel that they might think I am faking, but now I accept it as a compliment. I still have some pride and I plan and rest for events and errands outside the house so that I can be at my peak performance when I am out in public. I have often heard my Mom say, “Lois can put on a good show, but she doesn’t last very long.” And she is right. When I start to feel like my comprehension is slowing, my speech is becoming difficult, and my concentration is strained, I retreat to a quiet spot for a while. I spread errands out over several days because I can’t do them all in one day. When I get tired I get confused, forget things and make mistakes. Ironic, isn’t it? My peak times of performance are spent outside the home and not with my family. My family gets the bulk of my time, which is when I’m tired, struggling and frustrated. A wise man once told me, “Those whom we are closest to and love most are often those which we give the least consideration and kindness to. We are often more polite and considerate to perfect strangers that we are to our family members.” I try hard to save some energy and set aside quality time for family and friends. It takes planning.
FINDING MY BELIEF SYSTEM
I believe that every detail of our life has significance, even the tough times – to teach us a lesson, provide an insight, develop a deeper understanding, prepare and equip us to overcome challenges or turn us on to the path leading to our life purpose. It is our weakness that makes us strong. Looking back, I realize that the adversities of my childhood and young adult life provided the training for me to develop the traits and skills I would need to overcome the challenges of living with a brain injury. Believing that every detail of our life has significance gives value and meaning to our troubles and reduces panic and fear when things don’t go as planned. Believing that help is available if we ask empowers us with the courage to try new things and instills confidence that no matter what happens, we’ll be able to figure it out. Believing that E.H.F.A.R. (Everything Happens For A Reason) stimulates us to look for positives in the midst of disappointment.
Living with a brain injury was not what I had planned for my life, nor was it what my husband had planned for his marriage to me, nor my children for me as their mother.
It takes a lot for those of us who have brain injuries to adapt, build a new life and go on. Sometimes we are so self-centered, we forget to remember that this brain injury also happened to our families and friends and they have been forced to adapt and build a new life with us. I think we also need to keep the perspective that all people struggle with the challenge and demands of life and relationships, not just those with brain injuries. We are very susceptible to idealizing our life and abilities previous to our brain injury, and quickly forget that previously we made poor choices, mistakes, forgot things, lost our temper and didn’t always have a clean house or home-cooked meals. Our brain injury may be a reason that we have additional challenges or struggles with relationships, but never our excuse. It is easy to become self-centered and not see situations from any other perspective. Sometimes we need an outside source to help us find a way to work through difficulties and troubled relationships.
WHAT NOW? REDEFINING MY LIFE PURPOSE
Even as every passing year worked against the probability for me to do more than just exist in my structured and isolated environment, I never gave up my hopes and dreams to find something I was passionate and capable to do that gave my life purpose and meaning.
Brain Injury Survivor was not on my “who I wanted to be when I grew up list. Neither was motivational speaker. When I asked my doctors why my brain function was improving after twelve years, they all said the same thing. “It is a result of your consistent effort of doing many small things over an extended period of time.” Patience, persistence and perseverence … the qualities that helped me learn how to manage the challenges of living with a brain injury are helping me to develop the systems and strategies that I need to build my speaker business and tolerate “real world” environments.
This version of my personal story was written in 2004 to post on the BIAM (Brain Injury Association of Montana) website. At that time, I was 14 years post injury and just starting to explore my potential as a motivational speaker. Much has happened since writing this first edition of my personal story. Even though my ego begs for me to re-write it, I choose to leave it exactly as it was first written and label it Part 1, because of the feedback I have received from people who have read it from all over the United States. Particularly touching were those who searched the internet for explanations to ease the confusion and hurt surrounding their own brain injury … and found my story.
I am in the process of writing an update of my personal story, which covers the last four years and will include the story of developing my speaker business. Please check back in January of 2009 for Part 2.
Lois McElravy, Lessons from Lois, entertains, inspires and motivates audiences with humorous keynotes, workshops and adversity trainings. She provides life-changing insights, humor strategies and practical solutions gained from her personal experience of adjusting to a sudden life change when she sustained a brain injury nineteen years ago.
Her signature story provides family members, care-givers and professionals with a deeper understanding of brain injury from a survivor’s perspective. Lois inspires hope and motivates survivors to accept their new reality and redefine their life purpose. She equips them with strategies to manage their challenges, improve relationships and feel happy.
©2012 Lois McElravy, Lessons from Lois – Permission to reprint or repost this article is granted by including the above byline and Lois’ contact information. http://www.lessonsfromlois.com