Chapter 14: TBI – To Have and To Hold

First trip back home, August 11, 2013

First trip back home, August 11, 2013

“Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.”

I recently saw this on a sign in a store and I took note of it because it struck me as a simple expression of how a person is able to endure one trial after another for the sake of someone else.  It seems a good place to start in sharing something particular about my experience – with no intention of sounding boastful, just honest about a reality as I continually strive to be –  and that is the number of times I was and still am told that I am “strong”.

I first began to question these comments when I was at the Glenrose with Pat and I shared with our social worker there that I didn’t feel strong at all and I didn’t know why people thought I was.  They saw only from the outside that I held myself together while I was with Pat, working hard to never let him see how scared I was, how sad I was, how lost I felt.

They didn’t see how hard I had to fight each night not to cry myself to sleep because I knew I then wouldn’t sleep at all and wouldn’t make it through the next day if I was exhausted.  They didn’t see how I woke up each day crying and wishing that it had all been a bad dream, but realizing it wasn’t and having to choose to get out of bed and start all over again instead of just lying there, safe from anything new that might come up to make everything even worse than it was. They didn’t see me in my car at the end of each day, crying, sometimes screaming in agony because I could no longer reach the mind of the man I married and loved so much.  They didn’t see me struggle to remember every day things, to eat properly, to drink enough, to get through a day without melting down in a public place.  They didn’t know I had learned to force myself not to feel certain things out of necessity for my own survival.  They didn’t see my weakness, they only saw what I did for Pat, not what I couldn’t do.

I expected I was doing what any wife would do for her husband in our situation and “strong” was the last thing I felt.  I was falling apart and clearly putting up a good front that hid my brokenness well.

She told me that often spouses walk away from brain injury, that they just can’t handle it and they leave, that I wasn’t necessarily the norm, and that people admired my strength because facing the reality of a brain injured spouse was something that not everyone could do.  She said they didn’t see me just showing up, they saw me involved wholeheartedly every day, hands on, making sure Pat had everything he needed, including my love and support.  That this was somehow admirable didn’t register in my brain.

It was confusing for me, because the thought of leaving Pat for this or any other reason wasn’t on my radar.  The only place for me to be was right there, with him.  I couldn’t imagine anyone walking away from someone they loved and leaving them in such a vulnerable state when they most needed the love of their spouse and family.  But according to people who worked there and watched family dynamics unfold, some people did.

I have to say here that I cannot judge another spouse who doesn’t hold on and persevere in a relationship that is hit with brain injury and all that goes along with it.  I have experienced enough confusion, fear, pain and despair along the way to understand how some would want or need to walk away for their own sanity and well being.  I also know from spending many months in facilities dedicated to brain injury that each one is different and some people are changed so dramatically that there might be nothing of the previous person left to hang onto at all.  No one can know the pain of a spouse forced into such an unimaginable situation, or understand their reactions, without having lived through it.

I just know that for me there was no doubt that with Pat was where I needed to be, for him AND for me.  He was mine no matter what, and as broken as he was, nowhere did I feel as much at home as I did with his arm around me holding me close to his chest, where for just moments, with my eyes closed, I could experience something familiar: the feeling of “home”.

I never saw myself as strong; I knew though, that I was faithful.  Perhaps being faithful gives a person strength, purpose, and enough of what they need to get through each day of suffering, I don’t know.  I can’t explain these things because I only know myself and what I felt.  I just know that each time someone reminded me that I was strong, I felt a twinge of denial because the turmoil inside of me was breaking me down piece by piece and apparently what people saw on the outside was something else.

Later, during the time we spent at Halvar Jonson, I encountered the same comments, even though things there eventually got worse for Pat and for me and my ability to cope was threatened more than ever.  I again shared with the social worker that I didn’t understand these comments or how people saw me as strong.  Yes, I was there every day working with Pat, spending time with him, doing whatever I could to help him get well, but again, wasn’t this what any wife would do?  Again I was told that no, it wasn’t, and that it was clear that Pat and I had shared a deep love and connection that not everyone gets to have in their lives.  And again, all I saw was that I was faithful, and doing the only thing I could do in my heart, which was to stand by him and hold onto him and fight for him because he couldn’t fight for himself.

I wonder if what people saw was the human fight for survival that we all have in us when the chips are down.  I wanted to survive this tragedy, I wanted to still have my husband forever, I wanted my life back, even though it was going to look different.  I didn’t want to  give up and stop fighting for any possible shred of familiar territory that might have returned to me.  Is that “strong”?  Or is that merely human?  I don’t know.  I just know I was faithful; I knew I would always be faithful, and that when all was said and done I would remain faithful to my husband in whatever condition he was, because he was mine and I was his, and nothing would take that away from me, not my weakness, not his brain injury, because I loved him.

I thought I knew how much I loved him before the accident, but I didn’t.  It was only after many months of rehabilitation, watching him struggle in his disabled state, that I recognized how much I truly loved him if I could still love him so much as he actually was in his current condition with all his limitations.  I realized as I had been making decisions about my own health and future well being solely based on ensuring that he would always have whatever he needed, even at the expense of myself, that his life was more important to me than my own.  I loved him more than anything.

Is that strong?  I don’t know.  Everything I did, I did for Pat.  Perhaps I couldn’t see what others saw.  Maybe whatever strength I might have shown came from the fact that I was loved by Pat.  I just know I was faithful, as he always was to me. It wasn’t just because I promised to be so, it was because I chose it, every day; I chose HIM every day.  If that somehow helped people to appreciate the loves in their own lives, then I am glad of it.  But it is my suspicion that anything about me that might have appeared to be strong was really about love and the things we do when we’ve found it, because “being deeply loved by someone gives us strength, while loving someone deeply gives us courage.”

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One thought on “Chapter 14: TBI – To Have and To Hold

  1. Thanks for sharing your heart Ann. I remember our time at the Glenrose with Mark (our multi handicapped son). The staff would often ask me if I was Mark’s mother as it was very common that a severely disabled individual would be placed in a foster home and not stay with family. So sad for the others that have family but don’t see them. 😦

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