Brain Injury: from where I stand today
If you have never cared for or lived with someone with a brain injury, this post may help you understand a little more about this devastation. If you are or have cared for someone with a brain injury than I am hoping you will find comfort in the fact that you are not alone; that broken heart, those frustrations, questions and cries are something that many of us have experienced or are experiencing. In my case, I am in the "thick of it" as we speak. I am not going to explain the medical or scientific side of brain injury, I am going to explain what brain injury looks like from the view of a brokenhearted wife.
Brain injury is a thief! An alien that gradually took hold of my husband and has not let go...yet! I will always refer to the brain injury as something that is holding my husband captive. This person with these limitations and needs is not my husband! I don't know him! I am still trying to get to know this person. Someone who has not experienced this may not understand this statement. Prior to the brain injury my husband was energetic, hard working, a man who loved to read and write, study the Bible and study some more. He wasn't a man of many words, but when he was in the mood to converse, it would be an amazing time of connection and laughter. As our son, who is challenged with cerebral palsy, grew and became heavier, I was no longer able to carry him or carry out some of his daily care without injuring my back. My husband became my strong right arm, doing the heavy lifting and such. He took care of what most men of the house do; he mowed the lawn, trimmed the bushes, pulled the weeds, handled the car maintenance and took out the trash; if he was there, he drove and I enjoyed the scenery. Gradually things began to change; not sudden changes; we didn't experience a sudden catastrophe such as an automobile accident, a gun shot wound, or explosion, as many have experienced these devastating circumstances. My husband's brain injury gradually took over, squeezing his brain until his whole personality changed, until he was confused, forgetful; unable to drive or even complete a sentence. His ability to read and comprehend has been taken captive; which I think has been the most devastating for him. Gradually the man I knew and married, disappeared and now this stranger with so many needs stands before me. I have to care for him as a caregiver to a patient, as well as, learn how to be a wife that will meet his needs as a husband. Do you have any idea how difficult it is to move back and forth from wife to caregiver, back to wife. Throw in mom and special needs mom in the mix! Yikes, this calls for a wine-prozac cocktail! There are days where I long to just be his wife again; care giving is exhausting, please, just one day...
I am not a stranger to brain injury, as I mentioned before, we have a son with cerebral palsy; however, he was born with this brain injury and although he demonstrates the desire to do and want more, because he hasn't experienced it, his main goals and our main goals for him are: health, happiness, comfort and fun! When all of these ducks are in a row, he is a happy camper. My husband was completely independent, knew how to read, write, teach. This has been stolen from him by his brain injury. He experiences deep depression, I am still not sure if it's caused by the brain injury or his emotional response to the losses he has experienced. When I see him trying to explain himself or find the words, I see a prisoner trying to find a way out. How can I be a wife? How do I know when an inappropriate behavior is the brain injury or just him being a (fill in the blank) I watch from a distance, many friends, new found friends whose husbands have also experienced a brain injury or in some cases multiple brain injuries. Some of these women endure heavy and constant verbal and emotional abuse; some experience physical abuse, yet stay because they know that this is not their husband, it is the brain injury. The financial burdens some of my dear friends carry along with guilt and unending worry and questions about their future are unimaginable. My heart cries "it's not fair!" for them and for me. It's not fair! How dare this thief come in and steal our husbands! Some of my friends change their husband's diapers, others are contemplating leaving for their own sanity and the sanity of the children. Some of these women watch as their husband's health deteriorates, knowing they will soon be widows.
My husband is what some refer to as high functioning, although this changes on a daily basis. Some of his days his head seems so straight, almost carrying on a conversation, color back in his handsome face. These days give me hope, maybe we have gone through the worst and now things improve, my heart starts to mend, just to wake up the next morning to remind your husband that the plate of food in front of him is to eat and to please not use his hands. Brain injury breaks my heart over and over again. I know it also has broken my husband's heart. I am so grateful that we have a God who picks up our hearts and mends them, on a daily basis. Brain injury is a very scary thing! It's face changes every day! Our hope, God never changes!
I do not post this to belittle or embarrass my husband as his symptoms and limitations are no mystery to others, but to help all to understand the seriousness and to validate other's emotions, scary thoughts and doubts. God didn't call us to be fake; He wants us to be open and transparent and He will take care of the messy side of us. I am very messy right now. However, there is no doubt that I love my husband, even as he is being held by this brain injury, I love him and I was here before the injury, I am here during and will be here when he is freed from this neurological prison! No place to turn but to God.
To my friends who have never experienced this, please be comforted. There isn't an easy answer, a solution or a way out for us. Only God has the answer and we are well aware of it. We just need love, friendship and lots of patience.
My prayer is God give me and the other wives strength for whatever tomorrow will bring. Thank you for giving us the strength to get through today. Give us wisdom, understanding, love and compassion as wives and caregivers. Mend our broken hearts daily and help us to realize that you can take this mess and make it into something beautiful. I don't know when or how, but you are God and we are not. You know what you're doing. Help us trust you. In Jesus Name, Amen!