Schizophrenia and the Small Miracles: Hope and Reality

Posted on May 13, 2013 by Randye Kaye

        

Contrary to the popular saying, you don’t have to be careful what you wish for. Wishes are dreams, and it’s nice to dream. However, do be careful about what you expect. Unrealistic expectations can be the root of unhappiness with the reality of your life.
My son, Ben, who lives with paranoid schizophrenia, used to seem lost to us almost completely…maybe 20% of him was occasionally glimpsed by us behind his symptoms.  Now, with treatment for schizophrenia, he is back with us – about 65-75%. Depends on the day. But I’ll take it.

If Wishes Came True...

Sure, I wish for Ben to return 100%. Oh, my, what a nice dream that is.  I hope that research will result in even better treatment options, and that Ben would be willing to try them. But do I expect it? Not at the moment. It would only interfere with my gratitude that, much of the time, Ben is functional and coherent, able to work part-time and care about school , carry on a conversation, and – yes – have some friends (at long last).
Is it “enough”? Of course not! But it’ll do. We have seen worse – much worse – and many families are still dealing with more heartbreaking crisis, I know. But, yes, sometimes I still miss Ben – or, rather, the parts of him still masked by residual schizophrenia symptoms, in varying degrees. His sense of humor, his sensitivity to the feelings of others, can change from day to day. And, sometimes, it’s hard to pinpoint why.

“Realistic Hope” in Schizophrenia Recovery

What does that mean? Where exactly are we now?
You know how, after a cold, it is a miracle the first time you can breathe again through your nose? Or how, after surgery, it’s a thing of pure joy when you can walk to the mailbox and back?
Well, that’s how it can be when someone you love is coming back from episodes of psychosis. The “small miracles” are only miraculous because they had been taken away – and you feared you might never have them again.
Still – you’ve got to know the limits, and realize what isn’t along with what is. And rejoice when you can, mourn on occasion, and eventually accept – with a glimmer of hope for more improvement.
For example: it isn’t always easy to connect with Ben, still.  That’s the reality of treatment – at best, it manages many of the symptoms. But – it does not cure. Ben in not back with us 100% – oh, how I wish.
He still has schizophrenia, after all, despite the management of symptoms provided by his treatment. Still, there’s a lot that goes on in his brain that I will never know – and cannot really ask about anymore.
For instance – he refuses to cut his hair. Some kind of Samson thing,

Samson could not cut his hair

I suspect. But I don’t fight that battle. He still can be found glancing off to the side, as if he sees things that I do not. He retreats inward when there is too much, or too little, stimulation. As depicted in a previous post, he can be affected by everything from the flu to a stress of any change.
And – the easy flow of conversation and laughter? Boy, I sure do miss that, always. But – it that flow is there sometimes, in moments of connection that break through the clouds of his illness.
I just have to capture those moments and hold them close to my heart. And know their limits.

Living With Mental Illness Limitations

Fairly consistent connection subjects, for us, right now:

• Making family plans
• Sharing music – singing together, asking about what he likes
• When I compliment him
• When he is proud of something
• Scrabble or Boggle, or other family game
• Seeing a movie or play

Trickier, at best:

• Reminding him to comb hair, cut nails, do chores
• Large events with too many conversations at once
• Asking about what his goals are, he plans do to in the future
• What will he “do” with his college degree?
• Discussions about smoking

Yep, we’ve got to know the current limits of the symptom management. We must always keep one eye on signs of relapse, or of too much stress. The other shoe could fall at any time.
Still, there are moments to treasure. Ben danced with me last night at my nephew’s wedding. It was a treasured moment of normal.

Never Give Up Hope

But – what can you hope for, given the reality of current treatments, and lack of consistent support services?
Hope for everything. And fight for what you can.
What can you expect?
That will take time and experience to tell. Get support and education in the meantime…and count the small miracles when you can. Sometimes, they are all you have – and, some days, they just have to be enough