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Schizophrenia and the Small Miracles: Hope and Reality

May 13, 2013 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.

[caption id="attachment_1467" align="alignleft" width="170" caption="If Wishes Came True..."]wishbone[/caption]

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,

[caption id="attachment_1469" align="alignright" width="136" caption="Samson could not cut his hair"]Samson[/caption]

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.

APA Reference
Kaye, R. (2013, May 13). Schizophrenia and the Small Miracles: Hope and Reality, HealthyPlace. Retrieved on 2022, November 26 from https://www.healthyplace.com/blogs/mentalillnessinthefamily/2013/05/schizophrenia-and-the-small-miracles-hope-and-reality



Author: Randye Kaye

Thinking
June, 13 2013 at 7:53 am

Dear Randye
Thank you so much...I really appreciate your concern.
Well, here in Pakistan, psychology and the psychological disorders are not that much evolved...so I am not worried about any rights or no rights since here if anyone is ill...its the family responsibility whether family or patient likes it or not...
My brother goes to a Occupational Therapy in the hospital where he is in treatment...but it seems that he is much better for such therapy now. He seems like bored going there and may be needs more practical work to do than to be with those people who are worst than him.
Actually..he was never a study type person...he always used to talk about having a big supper store where he can sit on the cashier seat and he is very good in purchase and calculating amount.
And here in Occupational Therapy...when I asked him he said they do the monotonous work...like asking him everyday the same questions what you like to do for your life...and asking him to write about his plans...even the normal people get bored with monotonous work...so I really want to educate myself as well on this Occupational Therapy sort of things so that I can find out new ways to help him and make him more engaged in normal life than to send him to Occupational Therapy where he feels like he is not well....
Anyways...once I start living with him I will see what I can find and do for him so that he also can feel his presence and can earn to feel like independent although I know that he can start his own living due to the jobs conditions here....but I really need help on it....
I would be grateful if you tell me how I can purchase your book and if you can help me find those online support groups where I can voice out my concern about him?
Thank you so much again.
HR.

Thinking
June, 13 2013 at 12:05 am

Hi, just read your article and found it so inspiring. I am in Pakistan and my brother diagnosed with Schizophrenia when he was almost out of our hands. My mother (late) was so courageous to took him to have him properly medicated since here in Pakistan...people still believe that if someone is has mental illness...s/he is dangerous...people are hiding their relatives and are reluctant to go for the proper medication...by my mum...being the best mum in the world took all the burden...I am the youngest in my family and the brother I am taking about is only a year older...I am married...have a job while he is still there where he got the disease...I don;t know whether to call it a disease or not...anyways...people says he loves me so much even I can feel that....if I am making faces or even by the way remark that I am not feeling good he ask me about my health...sits with me whenever I visit my mum's house....but now since my mother died...being the only family member (we are six siblings all of them are abroad...Canada and London) in Pakistan I will going to take care of my brother...since he is older than me...and I seldom used to go to his doctor...I am a bit confused...whether I can do it or not...? I don't want him to suffer again...he is quite okay...now...as you said in your article...65% to 70%...he is back...but still he is schizophrenic and I am so so confused...he suggestions for me?

In reply to by Anonymous (not verified)

Randye Kaye
June, 13 2013 at 3:27 am

Hi to "Thinking"...
Your story transcends any cultural borders, and is oh so familiar. I wish I knew more about the rights and responsibilities of families in Pakistan when it comes to mental illness. I do know that there has been a request for copies of my book from a Medical School there, with an eye toward adding it to the curriculum so psychiatrists can see schizophrenia from the family's point of view, and how they can be helpful in the recovery phase if given access to support and education.
It's so heartwarming to see how much you love your brother, and I know you want to do all you can for him. In the U.S., families may be involved in treatment with the patient's permission...but there are many issues to be worked out. Is there a lawyer you can contact to find out what your rights are as a sibling?
There are online support groups in the UK and the US, and you might be able to access some information there as well.
Any readers know more about this? Your ideas welcome!
thanks,
Randye

Dr Musli Ferati
June, 5 2013 at 8:02 pm

Your observation on schizophrenia and its current psychiatric treatment reminds me on clever statement of William James: To study abnormality is the best way to understand the normality. In parallel of useful impact of psychosocial activity to patient with schizophrenia, social skills improves the global life performance of anybody. Therefore, it is of great importance develop and to perfect daily social activity, in order to rise the probabilities for satisfying psychiatric management of this serious psychosis. This didn't seek any sophisticated ability; it is suffices to had the desire to make plans that should insist to realize. This creativity in psychology is named as will. The will exhibits the whole mosaic of humane achievements, but the will is underground of appropriate of psychiatric treatment of schizophrenia, despite numerous accomplishment of neuroscience researches. As to belong to management of patient with schizophrenia, the possession of will is necessary for both: it ought to be active the patient and its social milieu, particulary, the members of family. By this manner of approaching, we definitively increase the level of global life functionality of patient who suffer from schizophrenia.

mary duffield
May, 19 2013 at 11:09 am

This is a wonderful story full of inspiration and hope for families. i agree 100% with the authors message, something my own family discovered many years ago when you could at least[if you had Insurance] get someone in the fam very ill with schizophrenia into a psychiatric hospital. [yes, another shameful statement about access to treatment] Our family too, realized the importance of relying on family strength and being open..but also came front and center with the reality that sometimes being open about schizophrenia in the family can come with a vulnerability to be considered suspect yourself...but don't let that deter you. Silence has gone on far to long. What gnaws at me still, is the fact that schizophrenia is a real, medical illness and the perceptual alterations that its sufferers endure shapes thinking and behavior . It should get the same recognition and research that other medical illnesses get. I am sick to death of seeing persons with this illness kicked to the curb. So they are often unable to recognize they are ill and don't ask for treatment and just become more disabled, who cares, seems to be the public mentality. well lots of families care and I encourage them to continue to become educated and speak out. I thank Randy Kaye for her story . Persons with severe and persistent mental illness, can and do with the right treatment and support,go on with their lives,though there may be compromises along the way. My experience is that as a group, persons with schizophrenia are some of the bravest and courageous normal people I know.By the way, I am also a strong advocate for assisted outpatient treatment because as a nurse working in an outpatient treatment facility, I know folks who have thanked others for helping to secure treatment for them. You see, Schizophrenia run amok, goes nowhere fast.The illness just takes over. But using current treatment approaches,until research gives us more precise tools, goes along way in bringing comfort and the return of functionability, all in varying degrees.

In reply to by Anonymous (not verified)

Randye Kaye
May, 19 2013 at 3:59 pm

Mary, thanks so much for your perspective! You make some excellent points - and I'm really glad you like my posts, and my book.
Best,
Randye

Beth
May, 14 2013 at 10:39 am

Just found your blog, glad I found it. My son was diagnosed 2 years ago at the age of 16 with schizopheniform. I always refer it to a roller coaster ride. Many ups and downs. Cant wait to read your book.

Kari
May, 14 2013 at 8:43 am

I love those moments of connection that peek out from behind the cloud of my daughter's illness. And I often wonder what is going on in her mind, but she started writing a blog about being a teen with scza, and now it's heartbreaking to find out.

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