Chapter 19: TBI – Holding On

Once the lithium started to work for Pat and he was more alert again, there were new issues that forced me to face the possibility of him not being accepted at a facility in Mayerthorpe, meaning that we wouldn’t even be in the same town, let alone the same house.  For a while it looked like he might have to go to a specialized facility in Edmonton, leaving me wondering about how I would stay involved in his life without picking mine up completely and moving away from family and friends to a city where I couldn’t afford to live.  It would have been the ultimate blow at the end of all this, and the idea of it crushed me further.

From my Journal, March 7, 2014:

For a week or so it looked like things were going to level out for you and you started sleeping well every night.  But now you haven’t slept properly for the last four nights and you are much more alert during the day, so unfortunately I’m waiting for something to be wrong again.  The alertness is a good thing IF you are also sleeping, but the combination of alertness and not sleeping is a concern.  Today you were more “on” than you’ve been in ages, and while I enjoyed my time with you so much today, I was also saddened because I know I will lose you again and I suspect it will be soon.  This is the cycle and my hope is exhausted.  I now expect things to go wrong and this makes it hard to enjoy the moments that you are very cognitive, because they are generally a lead up to your mania.  When I hugged you goodbye tonight, I just wanted to hang onto you the way you were right then so you wouldn’t disappear again.  But I can’t win against your bi-polar, which threatens to take away what little I have left of you.

Finally we received word that he was able to be accepted to the Mayerthorpe Auxiliary hospital, and while I was very thankful for that option, the move naturally created a turmoil for him and we went through another few weeks of mania – which was a difficult blow for us and for the staff who didn’t know him – and the ongoing uncertainty of whether or not he would be able to stay here at a facility much less equipped to deal with a high needs traumatic brain injury patient.  Again I faced the possibility that whatever good had come would be taken away; by then, I just expected it, and I was exhausted by it.

Eventually things calmed down for Pat to a somewhat manageable level; I found my new routine and began to settle in at home again.  But the day to day struggle of living apart from him and knowing that he missed home and couldn’t remember from one day to the next the reasons he wasn’t able to live with me was a constant source of heartache and sadness.  I knew how much I missed him, but seeing his pain was worse than feeling mine.  In those fleeting moments when he was coherent enough to ask questions, the answers were very hard for him to hear.  Each time he asked it was like a new conversation with the reaction of someone hearing it for the first time.  He shed many tears whenever I had to explain that he would be living at the Auxiliary for the rest of his life.  The only consolation – if you can call it that – was that the moments were short lived because of his inability to hold his attention long on any one thing, and before long he was distracted by something else, forgetting the discussion until the next time the question came to his mind.  I, however, wasn’t easily able to forget the interactions, his tears, or the anguish I felt when I saw him processing the truth over and over again each time it came up.  Then another day he would tell me he was doing his best and that hopefully soon the doctor would send him home when he got better, and I would hold my responses until there was actually a question to answer so that he could sometimes just have his thoughts of hope to keep him going.

From my Journal, after moving back to Mayerthorpe:

I think sometimes that I have moved past the anger, but then something happens, some moment, and I just want to scream and throw things through a window, as if smashing something to pieces will end this cycle for me.  But I know it won’t.  Tonight you told me that sometimes you feel like a burden.  It is only even fleeting when you have these serious thoughts and I rarely have time to address them before you are onto something completely unrelated, but they pierce my heart nonetheless.  When I was leaving for the night, you looked sad and I asked you what was wrong.  You replied that you miss me.  Usually you are settled in watching your music DVDs when I go home, so I can hold onto my tears until after I leave your room.  When you say you miss me and look so disheartened, I just want to hang onto you and at the same time the anger wells up in me instantly because we should not have to part ways every night and live in different places.  I read a quote the other day that went like this: “Life isn’t what it is supposed to be.  It’s what it is.  The way you cope is what makes the difference.”  I don’t cope well a lot of the time.  There’s just too much pain, and you shouldn’t have to suffer an emotional wound that you cannot understand.  At least on a good day I can sort through it myself somehow and know that this is how it has to be in our situation.  That is, on a day that I don’t feel the urge to smash something.

I never smashed things, but I do remember going to my room one evening because I knew I was going to lose it. I shut the door, sat on the edge of my bed and sobbed.  Then I started screaming and did something I’d felt like doing for almost two years: I started kicking the wall and pounding it with my fists while I hollered and let out all the air I had in me until I fell back down on my bed in tears.  It didn’t change anything; all I got was very sore hands and I still felt no response from God. I was trapped in an emotional cage and He didn’t even seem to hear me.

Over the summer I was able to walk with Pat over to my mom’s house, where we spent afternoons in her garage – my brother made a small cement ramp for Pat’s wheelchair to get up over the ledge from the driveway and to save me extra lifting – and Pat enjoyed helping with wood projects I did to provide something stimulating for him.  I was happy to be able to take him out of the facility for a few hours and he liked being outside and watching me work on things.  When the weather turned colder, I was able to find a used wheelchair van and get a mechanical lift put on our house so that I could take him home each day for a visit, and spend time with him in our own familiar environment.  He loved going to the house and was generally sad to leave, which sparked more questions and conversations about us living apart.  It was so nice to be able to have him with me at home even just for a few hours a day, but it reminded him more often that he wasn’t able to stay with me anymore.  He would tell me that he really liked it here at home and wished he didn’t have to leave, and then his face would turn sad and he would cry, and my heart would break some more. Everything was a double edged sword.

But while so many things turned out differently than we had hoped, and our end result was something we had worked hard to avoid, it is important to me to share that there were still things I was able to enjoy and recognize as much better than they could have been under the circumstances.

Once Pat had awakened enough to recognize me and know I was with him, he was always happy to see me come.  When he became more able to speak and interact with us, he was able to show us affection and share his feelings of love and appreciation with us, and expressed his joys and heartaches openly and honestly.  He was sweet, kind, gentle and affectionate and he wore his heart on his sleeve, having lost his inhibitions after the brain injury. He believed that everyone around him was working hard for him and helping him and he thanked people regularly for the ways in which they helped him with his daily life, his lessons, his exercises. He never complained about anything. He frequently told people he loved them and appreciated them, and he was happy about every little thing that was done for him.  He often told me I was doing a good job and thanked me over and over again for taking such good care of him. He was precious and beautiful and he said things in simple and loving ways with the innocence of a child.

Looking after him and working to make his life good and happy taught me about what is important and what isn’t; it taught me what my marriage meant to me and how much love I had for him, and that even in his injured and disabled condition, his hug was still my home, because even though the man I married had disappeared in so many ways, he was still there inside, in his heart, where we were always connected.

I’m thankful that his sweet, kind and gentle personality was not lost along with his many memories of life, and that right up until his final days we were able to enjoy the warmth of his smile and feel the depth of his love for us.  I will always hang onto the image of his face, looking up at me over the top of his glasses with wide eyes, as he would randomly say throughout the day “I love you, Annie … I love you very dearly.”  And often when I told him how much I loved him he said “I know.”

While I don’t know the whole song, one line below continues to permeate my thoughts on a daily basis now, when I’m sad, lonely or even in a peaceful moment, because it expresses simply the truth of my life of loving Pat. It reminds me of what was most important through everything else, that no matter how hard it got, no matter what I wasn’t able to do to fix Pat’s situation, we had experienced loving each other and he had made my dreams come true:

 “If it all falls apart, I will know deep in my heart,

the only dream that mattered had come true;

in this life I was loved by you.”