You don’t always win your battles, but it is good to know you fought . ~Lauren Bacall


Our long and stressful legal battle is coming to a close this week. I hope. We still have plenty of legal paperwork to get completed and with the help of our persistent attorney, we hope to bring this three year battle to a close in a couple months. However, it is not without mixed emotions and feelings of much anxiety of the future.


At the end of all this, no one really wins. No one goes through this and comes out the same. Not me, not Sam and definitely not Tom. It is easy to look at all this and feel sadness and pity. I however, feel immensely proud to be the one to fight the battle for Tom. But it is not without a lot of sorrow and emmense sadness and some anger thrown in for good measure.   Not one person will win in this. We all have lost. There is no amount that will make this whole. Win or lose, we already did loose it all. Tom will never be the same and our family life will never be the same. He will require 24/7 care all of his life. I didn’t expect this, he sure didn’t and Sam did not deserve this situation. It isn’t fair for anyone.   But we can’t change it. We will care for him as long as we can, and I hope he outlives everyone’s expectations and that it is as good of a life as we can make it.


June 13, 2011 will forever be etched into my brain. It was my first lesson in TBI, aneurysms and the devastating effects that it would have on our family. The look of someone in an ICU hooked up to machines, and IV’s, tubes and all, is not a look suitable for even the strongest of loved ones. I have learned about hospitals and how they work. Insurance companies and how they rule. I know I can sleep standing up or sitting up in a chair. I have learned how much hard work it is to recover from such an injury for the injured and their loved ones…and it does take a village:   Physical therapists, Speech therapists, Occupational Therapists, radiologists, caseworkers, Lifecare planners, counselors, Neurologists, Neuropsychiatrists, Neuropsychologists, attorneys, court investigators, probate, conservatorships, caregivers, friends and family.   I learned to pray. Pray very meaningfully. Not asking for anything, but strength to get through this, and to make the right decisions. Sometimes, I didn’t think it would really help anything. But I did it anyway.


Tom has no memory of what happened. He describes how he didn’t think he would get out of the hospital. He knows the doctors worked hard to save him. He often talks about that it just wasn’t his time to go. That is why he is here. He can describe a place he went, didn’t know really where it was, but he wasn’t suppose to be there. He talked about it often when he first got home from the hospital. Makes you really wonder.   Tom doesn’t know exactly what did happen, he knows he isn’t the same, and he does know something bad happened.   He tries hard each day to get better. He still struggles with daily activities, being cued up to complete a task such as showering, shaving, brushing his teeth, and laying his clothes out in the order they are to be put on. He has no patience. He only has a 3-7 minute memory, no sense of taste or smell, has trouble sleeping, gets fatigued easily. He doesn’t know when or where we met, doesn’t remember when Samantha was born, how old she is, sometimes he doesn’t remember her name. He can swear like a drunken sailor at the drop of a hat.   And then apologize, not knowing why he said what he did. I am the narrator of his life, repeating what needs to be done daily, day after day after day after day. If something isn’t said on what to do, it simply doesn’t get done.


The injury caused deficits in his executive function. Executive function relates to a person’s ability to initiate, plan, fix mistakes, complete and evaluate the results of any given activity. It effects everything in life from making a cup of coffee, to paying the bills. Just think of the brain as billions of little arms passing information back and forth. During a brain injury, some of those arms are amputated, so messages can no longer be sent, or have to take a detour. That is how the brain begins to heal itself, taking little detours to get the job done. It doesn’t always work, though. Sometimes that arm is just gone, and with it, the job it once performed.   No matter how hard you try to get it to work, it is simply gone. Forever. Sometimes there are strategies that will help with the deficit, some can’t be helped at all.


Our life now is a sitcom, a tragedy, drama and a series of short films all pulled together as one. Emotions can go from denial, acceptance, anger, peace, joy, and sorrow at the simplest provocation. It is possible to feel two emotions at one time. Feel lucky Tom is alive, cheated that I no longer have the husband I had on June 12, 2011. Thankful that he can walk and not be in a wheelchair, ungrateful that his days are limited to listening to a book over and over again, or watching TV. Hopeful for any new activities that I can find for him and then hopeless that there isn’t more for him.


Small things will still make me cry: Tom thanking me for taking care of him. Thanking me for making him a meal. Or Tom, making some gesture that is familiar from our past. Sometimes I just weep at any bleak reminder that our lives radically changed. The words: “never the same” will haunt me and will follow me forever.   Every book I read, website I visit, meeting I go to about TBI, always leads to the same conclusion, “things are never the same again”. I have read so many books, and in the end, all say, they have found “peace”.   Maybe that is just a nice way to say that they have adjusted to their own situation. Yet in all that I have read, the end of the story is that the changes are viewed as positive. I have to also see and know that some of this has been a change in a positive way. I know that each day, I will find at least one positive thing or action that I know is because of this. It might be the opportunity to help someone else or it may be something as simple as a thought. I do wonder much about what is in store for our family. What happens in 5 years? 10 years? It feels like a lifetime already. I feel I have aged 10 years this year.


For Samantha, it is a part of her life, part of her story. This will not define her entire life, but it is part of her story. Just one piece of a life, not her whole life. However, it has effected her forever. She doesn’t like to talk about it much, and has a small circle of friends that she doesn’t have to explain much to them. She just knows that she can count on them.


For me, I have the role of Mom, and of Dad, caregiver, breadwinner, cook, housekeeper, accountant, chauffer, repairman, counselor, researcher, teacher and everything that it takes on a daily basis to keep this family running. I feel that Tom’s injury has swallowed me up most of the time. There is sometimes no way to describe or explain the void you have inside. Since his injury, I love him more for his resilience, but also know that I have to build a new relationship with someone that is drastically different than who I knew before the aneurysm. Each familiar emergence will be precious. Fear of the future, I do have that. But I know that my future is with Tom and with Sam.