Chapter 18: TBI – Sink or Swim

IMG_1821 When I first started sharing this story, I was honest in writing that it wasn’t “going to be a story about how faith and positive thinking kept me from losing hope…”, that it’s “a real story with raw feelings and emotions, and pain that never goes away.  It’s a story of lost hope, lost faith, and the lonely existence left at the end of this path of TBI – Traumatic Brain Injury.”

I don’t remember ever not believing in God.  I was raised in a Catholic home, we went to church regularly, and this continued into my adulthood, marriage and the parenting of our children.  Pat was also Catholic and we were both involved in our parish for many years.  I studied and taught adult catechism and helped organize programs designed to help others find God and their place in the Catholic Church.  I didn’t understand how people could not believe in God, or how they could go to church for many years of their lives and then just stop going.  I confidently answered questions from others with information that I had learned was true, and had no reason to doubt.  I knew many things on an intellectual level, about the Church, about faith, about prayer, and about life.  What I didn’t know was that despite all I had experienced in my faith for over forty years, my “knowledge” meant nothing once real life handed me something that proved I really had no answers.

When Pat had his accident and was in a coma for so long, I held onto the hope and belief that if God had saved his life in a situation where he could easily have died, then the only good reason was that he would wake up and be fine.  Nothing else made sense to me.  For weeks, I thanked God that Pat was alive and prayed he would wake up and remember our life together.  I went to church, I prayed often, I persevered, confident – from everything I “knew” – that it would help and that I was doing what I should do to make sure Pat would be OK.  I wasn’t angry; I was scared and lost and devastated by the tragedy, but I didn’t feel anger towards God. I don’t remember when I first recognized the anger; I do remember moments when I needed to scream out loud in the privacy of my car because the anguish and my inability to fix anything were choking me.  I knew I was frustrated beyond imagination, because Pat had come out of the coma and was far from fine, but I didn’t recognize it as anger.

I was scared to be angry with God.  Everything I had learned trained me that was wrong, that somehow it was a terrible offence to question his way of doing things.  I think I was angry sooner than I was able to admit and I just suppressed it out of fear for  the safety of own soul. When I expressed any sense of doubt, I often heard words from others like “God’s ways are not our ways”, “trust in God and He will take care of you”, “keep praying and don’t lose hope, there is always hope”, etc. and wanted to scream because they just made me feel more alone.  I already knew all the lines, the Scripture passages, the cliches that reminded us that suffering was part of our earthly journey and that we don’t always understand it.  I just needed people to acknowledge how hard this was even if they couldn’t understand.  Trying to be helpful and keep spirits up, they were well intentioned, but with the turmoil in my heart and the loneliness of not being able to share it without correction and reminders, their words just added to the pain.

I was having a faith crisis for the first time in my life and it was scaring me.  Pat wanted to pray more than ever because, in his vulnerable state – unaware of the extent of his disability – he was thankful to be alive, thankful that God was so good to him, and he knew God’s love for him in a way that I clearly didn’t understand myself.  I went through motions with him to make him happy and inside I was falling apart because the last thing I wanted to do was pray to someone who had the power to help us and wasn’t, someone I had been taught to love and honour who seemed to be abandoning me when I most needed help.  I still attended Mass on Sundays, because I knew I should go, but it was no longer because I wanted to or felt that it helped me. I was protecting my soul, or so I thought.

“Seek counsel from every wise man” (or woman…)

There was a chaplain at the Halvar Jonson Centre who I believe saved me from completely turning my back on my faith at that time.  She wasn’t Catholic – which I note here because all my life it had been my feeling that only Catholic clergy could properly guide and advise me on faith matters because they had been ordained in the Church and knew the teachings, and seeking counsel from anyone outside the Church was a foreign thing to me.  It wasn’t something I would even have considered before and I felt a twinge of fear and discomfort at the thought of it.   However, there were weekly prayer evenings in the chapel and Pat enjoyed attending, so I took him regularly and I felt a sense of peace in her presence.  Eventually, one day, when I realized that I was in spiritual distress, I asked for an appointment to see her.

When we met in the chapel that day, I was crying, and I told her I was having a “God crisis”.  She took me into her office where we sat down and she asked me to tell her what was going on.  So I let it all out:  I told her that I just couldn’t help questioning and doubting and being angry, because everything was so hard and I didn’t understand why God wasn’t helping us, why it just felt like he had left us alone and every good thing that came along was taken away so quickly, that it was so hard to hold onto any hope.  I was worried I was headed for hell because I couldn’t reconcile how I was feeling with what I thought I understood about faith.  And when I was finished sobbing, she gently told me that the whole situation WAS unfair, that what I felt in my situation was normal, that I had every right to be angry, and that God could handle my anger because he was God, that he knew how I felt, and that he would still love me and want me whether I was angry with him or not.  It was such a simple thing to say, but no one had responded like that before and I felt certain that she was the pastor I needed right then.

She didn’t try to remind me of Bible verses or cheer me up with promises that everything would be OK if I just kept praying and hoping.  She didn’t tell me God would fix things and that I just needed to trust him.  She didn’t have those answers and she knew it – working in a brain injury and mental health facility had offered her many opportunities to learn that things don’t always work out, and sometimes the results we get are devastating. It was a very enlightening encounter and I was grateful she was there.  I began to feel more comfortable in my own thoughts and accept the changes, as experiences continued to turn my familiar world upside down.

I won’t say that things just got better after that, because they didn’t, but I felt less guilty for feeling the real things I felt and I began to understand how people could not believe in God, or how they could walk away from a faith they had practiced all their lives.  I understood why they didn’t always have clear explanations for those changes and that sometimes a life experience can affect us so deeply that nothing stays the same, even our faith.  I was no longer afraid to admit that I had serious questions about what I really believed and what it meant, and what I was going to do with all of that.

The day to day challenges of Pat’s ups and downs took their toll on me and I felt like God was dangling carrots just close enough for me to almost reach and then snapping them back again, as one medication after another was tried, appeared to work for a short time, and then failed.  I got angrier about what I saw as a cruel game being played with our lives, but I was open about it in prayer and realized that if I was feeling something, I might as well say it out loud because God knew anyway and I was hiding nothing from him by holding back words.  I did thank him whenever something good happened, but I learned to stop expecting anything good to last.  I had lost my hope, I was losing my faith, and I was losing even more of Pat than I had already lost to his brain injury.  I knew my attempts at prayer were forced and that I had little faith left in anything, but I prayed each day that if Pat was supposed to get a miracle, God wouldn’t keep it from him because of my lack of faith.

If you feel despair, it means you still believe in something.

There was a point when I noticed over the course of a few days that the ultimate doubt was getting stronger and stronger in my mind: did I still believe in God or was this the point at which I was realizing that we really are on our own here? I dismissed the question because I didn’t want to feel guilty or focus on something that could have been a mere temptation.  But one night as I was trying to go to sleep, it was going around and around in my head and I couldn’t ignore it anymore, so I turned on the light, sat up, and faced it.  I told myself out loud that I had to make a decision one way or the other and then put it to rest.  I looked at both options and, as angry and hurt and frustrated as I was, and as much as I felt I had every reason to walk away because I didn’t think I had anything left to lose, I couldn’t imagine a life not believing in God.  It just didn’t work for me.  So I made the choice to believe.  And I went back to bed.

From there on, that’s all I had and I knew it, but it was enough.  I no longer knew what believing in God was going to mean; I no longer knew for sure who or what He was for me or anyone else, but it was enough to know I believed he was really there, somewhere.  I figured that the rest was now up to him because I had tried my best to hold on and every shred of hope had been taken from me despite my efforts and prayers, and I was done.  I had nothing left.  So I told him that my faith was in his hands.

My anger peaked just before Christmas, 2014, when I had been asking myself for a few days just what God could do at this point that would make the situation “better” so I wouldn’t be angry anymore; I knew Pat wasn’t going to have some miracle allowing him to get up and walk and be himself again, and couldn’t think of what would actually satisfy me.  Then one day in a conversation, someone asked me out loud the question I’d been unable to answer, and I had to admit to myself that there wasn’t anything that would make it better anymore, that it was what it was, and that I didn’t want to live the rest of my life as an angry, bitter person.  I wanted to have a life and to make Pat’s life as good as it could be, and I couldn’t do that until I accepted what was not going to change.

Certainly anger is a natural – and I would say necessary – part of the grieving process for most people, depending on their individual circumstances.  We are human and we have responses to events that are real and normal, and often suppressing our feelings just hides them away to come out in stronger ways later on.  Facing the anger and answering the question helped me move through it to find a peaceful acceptance on the other side.  Acceptance in grief is not a place of “happiness”; it is a sad but necessary place to reach.  It seems that I found it just in time to learn that Pat’s health issues would take him away from me completely and forever and, in the end, much sooner than we had anticipated.  And again, I threw up my hands and thought it typical that there should now be one more thing to learn to deal with, because I had finally made it through the previous trial.  There was never any breathing room to regroup; from a human perspective it was, from day one, a series of suddenly changing and ever hurtful steps towards this end, and getting past one hurdle only brought the next one closer.

My relationship with God has gone through monumental changes during this past two years.  I don’t know where it’s going from here, but I know that it’s now much more real than it ever was before.  I’m a real person living in a human world, not a saint with some kind of protection, and I no longer seek to do the “perfect” thing or work so hard to be “good” in hopes that this will save my soul.  It didn’t and it won’t.  I no longer believe things just because I’ve been taught to believe them, or hold opinions or perspectives that are dictated by whatever I understood my faith to be.

None of this should be taken to mean that I’ve turned away from my own religion or that I place blame anywhere, and it’s not to say I don’t care how I live, or about others, because I think I care more now than I did before; I live based on my experience which has changed the way I see the world, the way I see other people or respond to their choices, the way I look at life, and the way I see God.  I know things I didn’t know before, and what I thought I knew doesn’t seem terribly important now; it isn’t even something I can clearly explain out loud.  I just don’t know if it was supposed to be so hard to have faith – to find Jesus – or if over all these years since He walked on earth, we’ve just made it hard.

There are things I can no longer accept without question, and I’m not afraid anymore to have doubts or to look at things differently.  I don’t know if anyone really has the answers.  I just know that there have been people who saved me over and over again from complete despair and some of them had no connection to my church or any other, so I’m certain that more than just select people are placed in our path to help us get through the trials of this life and find our way to making the decisions we need to make. I’ve experienced tremendous goodness and kindness from people in all walks of life, some who might not even know about or believe in God, but they cared about me and our family.  I’ve known dedicated doctors, nurses, therapists, social workers, and care aides who did whatever they could to make tragic lives better, and it just doesn’t matter to me if they ever went to church on Sunday, because I don’t think that is what makes people good.

I still struggle every day to find my way back to any sense of hope, trust, or expectation of anything other than a worst case scenario, because my experiences have stored data in my brain that doesn’t allow it to compute things the way it did before.  I have no interest in studying the books I used to read, saying specific prayers I used to say, or in worrying about whether or not I say and do the proper things to meet expectations of what my walk from here to eternity “should” look like.

Some might read all this and think that I didn’t hang on tightly enough, or that I gave in to temptation and that my loss of faith was my own choice, and I won’t blame them, because had I heard a story like mine before experiencing all of it myself, I might well have had the same reaction. But I’ve given up the idea that we ourselves are always responsible for whatever goes on between us and God.  We say that he is the almighty power and authority, not us, so I choose to stop feeling guilty for doubting, questioning, and recognizing that once all the things we’ve been trained to do and believe are stripped away, what we are really left with is the personal question of whether or not we actually believe in God. Answering it then, when all else seems gone, affords us the opportunity to start over again from a fresh perspective.  Even though at some point I might again desire more, at this time it’s enough to know that I’ve chosen – in freedom – to believe, and I no longer feel the need to analyze that.

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3 thoughts on “Chapter 18: TBI – Sink or Swim

  1. thank you Anne for being so honest in your feelings. Perhaps someone else who is experiencing a crisis of faith may find comfort in knowing someone else has experienced the same. I often ask myself if my faith is truly strong to weather a true crisis. I thank God that so far I haven’t been put to the test. I am amazed at the strength you have shown despite so many heartbreaks in the last few years. I pray that God will continue to put people in your path that can support you through the joys and trials to come.

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