The Cost of Hope

This is a disclaimer. This is not a post about things we are doing.  This is an essay I have written about me and my process as we have stood by Ben in his illness.  It is not a happy post and maybe more than anyone wants to know, but I feel it is important for my future family who may some day walk a similar path after I am gone.  Mental illness is a tough situation for everyone and the need for hope is critical but hard to find.  I wrote this over the past year.  The initial phone call that is referenced in the essay happened a year ago this month.

THE COST OF HOPE

This is small clay rose that Ben made me
once during one of his hospital stays. It has more
of a story as well, but it reminds me to keep
hope alive for Ben.

When I hung up the phone, the thought came quickly, “Are you willing to hope again?” It has been tumbling around in my head for the past week.  The phone call that started this train of thought was with a stranger.  My son’s current psychiatrist thought we “might” understand each other.  It was a three+ hour conversation filled with laughter and tears, sharing and remembering—a safe place to be understood and to understand.  Hope was the message she wanted to give but hope and I have had a checkered past over the past 13 years since our son was diagnosed with schizophrenia.  Somewhere along the journey I had put it down—one of the casualties of the battle we are fighting—he and I.  She was inviting me to pick it up again.  Could I?  Should I? What if I am too afraid?

To be clear, my family and friends would describe me as a positive and hopeful person.  I have built my life on a foundation of religious belief where faith and hope are critical components.  I have centered my life on them, and they have guided my direction and my decision making for my life.  I have confidence in who I am and the purpose of life with its many peaks and valleys.  I have chosen to have hope despite the difficulties around me.  Except for this one thing—hope that his life will someday be better.

It did not start off that way.  When our son was first diagnosed at the age of 18, we were filled with hope.  Yes, this was a hard and difficult thing, but the doctors expressed confidence that medications would help him.  Our son had insight, he had family support, we had resources, and he was medication compliant. We engaged in therapy and attended NAMI classes. And I read and read and asked so many questions of any provider who worked with our son. Our son researched his illness and learned better how to express his inner struggles to us and his providers.  We supported him as he sought for alternatives for treatment as long as he continued to take his anti-psychotic. 

We had some early “hits” to our hopes when the first two anti-psychotics caused some difficult side effects which caused him to be taken off them abruptly and switched to something else.  Side effects took a life of their own and our son’s focus became fixed on his side effects rather than the symptoms of the illness itself.  After having a stable period of about 10 months early on in his illness, side effects or the illness started causing a circular pattern of symptoms which required frequent changing of medication to allow him and his illness to be managed at home.  Our son’s functioning never returned to anything close to his pre-illness and in fact continued to decline. 

I was early one time to a team meeting at the local community mental health center where our son received the bulk of his services.  My son had not yet arrived, but most of the team was already present. I said, “I would appreciate it if you no longer talked about recovery in these meetings.  Recovery is when you break your leg, have surgery, and then eventually you can ski again, or you have pneumonia and take medication and recovery fully.  It leads our son to have unrealistic expectations of himself, the medication, and of the illness.”  The team argued the point a bit, but slowly the word dropped out of all conversations. A new word was introduced—his baseline, and even that became a moveable target with steady declines over time.  Our son, despite starting off with insight and all of the things which should have predicted a more positive outcome, was getting worse. 

One day about 8 years into his illness, my son’s psychiatrist mentioned that a new medication had been approved and seemed to perhaps work slightly different.  She suggested I research it because she might consider it for our son when it became available.  I knew then that hope had died for me although I did research it, I felt no feeling and my response back to her ended with something like—"I no longer believe that any medication will make a difference for him.  We need to simply help him make the best of things.”  A year later, he was admitted for the first time in our state mental hospital.  I allowed myself to hope for a time that perhaps with close supervision and management of side effects as they happened might be a turning point, but the difficulty of the situation did not seem to allow for that outcome.  So, my hope—our hope—was officially gone.  We had tried “everything.”  There was nowhere else to go, nothing more to do. 

We love our son and have tried to allow him his independence but also give him the support and advocacy that he needs.  We take things one day at a time and rarely talk to each other about the future for him.  This is our reality and his—and if we do not hope for something better, then day by day is not as painful and the grief is not ever present.  I was not or am not proud of where I have ended up, but I was sure that it did not really matter. I was sure that my son was not aware that I had no hope that his life would improve. I still am involved in his life, I still advocated for him, and attended appointments when he asked me.  I still love and cherish him.

After three months of terrible symptoms, our son has recently been admitted back to the state hospital on a new unit with a new psychiatrist.  The staff and the psychiatrist have said and done all of the “right” things to help me to understand and be involved in their treatment of our son, but I did not care.  I was not going to believe that things could be better for him.  After all, if things were better, great, I would celebrate along with everyone else.  What did it matter what I personally thought or felt?  The team was doing the treatment, not me.  But now--the phone call where a stranger is telling me that my son is in the best place possible with a psychiatrist who will take things slowly and will listen to us and to our son.  She is telling me that miracles still can and will happen.  She is saying that hope is what we—what I—need. It comes back to-- should I, could I, am I too afraid to hope again?  I know the cost of hope-disappointment, grief and sorrow, feelings of failure, high expectations which others do not meet, and fear.

The hope we are talking about is not the casual hope suggested in the sentence “I hope the weather is good on Saturday.”  It is the soul-binding action “hope” that helps you engage in the work that is needed with the passion that is unstoppable.  It is a hope that allows you to maintain a long-view while dealing with the realities of the day to day. For me, returning to this hope can allow me to see and acknowledge the tiny miracles that happen even in the middle of this horrible illness.  Having hope can open my heart more to take pleasure in the simple things—a phone call, an “I love you,” without being overwhelmed in the losses of the illness.  It would allow me to once again pray for my son more fully.  This hope doesn’t guarantee any outcome nor even improvement, but it allows me to explore and put myself on the line—all of me—in this battle against schizophrenia.  After all, my son doesn’t have a choice.

I wrote this essay to this point about six months ago—the realization that Ben did not have a choice in his daily battle with schizophrenia really struck me when I wrote it and it became a hinge point for me as I continue to wrestle with the idea of hope in relationship to Ben.  I realized that I was trying to avoid pain and sorrow by giving up hope, but Ben still had to take the “hits” of his illness as they came—no timeout for him. Not that I should be miserable and grieving all of the time because of his illness, but I felt that I also shouldn’t step so far from the battle either. I needed to be engaged intellectually, emotionally, and spiritually and doing that meant that I needed to find hope again.

So, I did what I do—I read, I prayed, and I pondered again and again and again.  And in little tiny moments and in small ways, a shift occurred and I sensed first a willingness and then a little flame of hope growing inside of me.  One day, as I stepped outside of the Reception Building at the state hospital, where you check in before making a visit, I noticed the setting sun—the sky and the clouds were perfect—and the air had that rose tint to it, I took a big breath in and I felt filled with the peace and hope that I had been looking for. And although Ben has had some significant ups and downs in the past month, that same feeling of peace and hope remains with me.  I have hope.

It is not the hope I sought at the beginning of this journey.  Then the hope was centered on Ben getting well or finding the right medication so he could return to the life he and we had planned for him. This new hope is based on a much more eternal view of life and its purposes.  My hope for Ben is to be able to “fulfill the measure of his creation.”  Throughout the rest of his life, I want for him to be where he should be, interacting with those he should impact, and complete the plan that His Heavenly Father had for him.  In my life, I know God has a plan.  It is not any different for Ben.  Schizophrenia may have been a surprise for Ben and for us, but it was not a surprise to our Heavenly Father—it was the plan.  I know that Gary and I have grown because of parenting Ben.  I believe that he has impacted others.  Those who have shown him kindness and respect even in the middle of a terrible illness—someday Ben will stand as a witness of their goodness.

Early in his illness when he still had insight and access to his core self, he told me one night that he had thought about it and if him having schizophrenia was what was needed for me and Gary to make it to the Celestial Kingdom, then he was willing to do it because he loved us. I, of course, began to cry and told him that “it would break my heart if I was the reason that he had to suffer through schizophrenia.  I would rather suffer than watch him.” The reality is that neither of us have a choice about this.  We can only each play the role that we have been given.  From where I am sitting, Ben is working hard.  I can do no less than my best as well. I can and will pay the cost of hope.