Why I Still Hate Schizophrenia
Let me be clear, I love my son Ben with all my heart. That will never change. If you've followed this blog or read my book, you already know that about me. If you, too, love someone who has a mental illness, you share that feeling or you wouldn't be here on this site looking for support.
But, let's admit it. These illnesses suck.
Love my son, hate his schizophrenia.
[caption id="attachment_1677" align="alignleft" width="170" caption="Not Fun in real life"][/caption]
Why this post, today? Because, once again, the game of Chute and Ladders that is "recovery" has made a move down the chute - and I don't even remember throwing the dice to land on that fateful spot.
Spotting Relapse Symptoms in Schizophrenia
Family members of those with mental illness get extremely good at spotting signs of relapse. In our case, phase one is when Ben gets overly talkative, but in a very forced way. "MOMMY, HOW WAS YOUR DAY? TELL ME, I CAN'T WAIT TO HEAR!". Too cheery, too loud, too forced. Almost as though he is trying to drown out increased noise in his head by imitating social graces.
That is how Ben was acting yesterday - and also argumentative, childish, and distracted. If we aren't careful, phase two will come on its heels - distracted almost beyond engagement, depressed, uninterested in the things that have come to give him so much pleasure and meaning when his mind is balanced: friends, school, his job, cooking, family time, board games, video games, bike rides and walks. He will plug in his ipod and headphones and tune us all out.
I hate that phase. But if gone untreated, the next phase is even worse: psychosis. The
wait for him to be "sick enough" to be hospitalized. And, even then, the difficulties of getting him to take the meds that work. The law is NOT on our side, even when he gets a bed in a psych unit. This we know from experience: he can languish there for too long, taking ineffective meds at best or none at worst, while we hope and pray and plan for a way to "get him back on the right path."
So we try to nip relapse in the bud before in blossoms once again into chaos.
Can We Find Reasons and Solutions for Relapse?
First question: Why might this be happening? And right now, we have no clear idea.
- Could Ben be tampering with his liquid meds again, diluting them despite the lockbox that holds them? Did he get hold of the combination somehow? So we have changed the combination, and fortunately his refills are due so we will have a new bottle tomorrow.
- Is it the fact that right now Ben has no structure? Spring semester hasn't begun, he is still in seasonal-layoff from his job, his "room-mate" (a friend that currently lives with us, and is Ben's best friend) was away this week, and I haven't been home much this week due to work. So - stress? loneliness? lack of structure/purpose?
- Did he somehow smoke marijuana, or drink? Ben goes to meetings to stay clean/sober, and has been for years. But - well, you never know.
- Did he purge this week after taking his meds? He used to do that but had stopped, and we require "sitting time" after he takes his meds. But were we too lax? Does he need to be watched for more minutes?
This morning Ben is still asleep, at nearly noon. This is often a good sign that his meds are effective, but I don't know. Right now, we're just enjoying the peace and quiet of Ben, asleep. Then, it's all serenity prayer stuff: do what we can (call the psychiatrist, get new meds, etc), let go of what we can't do right now (cure schizophrenia), and try to stay with the idea that we have handles this before, and will handle it again.
Why Hate Schizophrenia?
Parenting is not about perfection, as we all learn very quickly when parenthood is real. Hopes and dreams must change as life happens. Why hate schizophrenia? Because we don't hate Ben. We love him - but that damn illness sure gets in the way of so much possibility.
I often think about my friends who have raised a beautiful son with Downs Syndrome. Their son Eddie is now 40, and is doing quite well - loves music, works part-time, enjoys photography. But my friends' job as parents is quite different from what it would have been without the Downs. Caregiving lasts longer, vacations always include Eddie, medical issues come up frequently. Yes, they love him and will always care for him. But it isn't always easy - nor is it "fair", if there was such a thing in life.
I hate schizophrenia because it prevents Ben from moving ahead with his life. It gets in the way of every job he applies for, every friend he tries to make, every dream he has had so far of having a girlfriend, getting married, being a Dad. It forces him to be dependent on medication that he does not believe he needs. It puts him in a position that he knows is a drain on the family. Schizophrenia steals - even when treated to the best of current medicine's abilities.
Schizophrenia has stolen joy from his eyes, clarity from his mind, possibilities from his future, depth from his relationships, money from his wallet. He wishes for a car of his own, a job above minimum wage, a life that includes progress - but he seldom complains. His old high school buddy is now the dentist that fills his cavities. His little sister has accomplishments he may never see. Yet he is one of the nicest people you'll ever meet.
Today, though, it may be hard to be around him. Today, Ben may spend his day sitting at the local Starbucks, the "weird kid always singing to the music in his headphones" sitting in the corner with one cup of coffee for hours (though he does tip well). I hate this. I hate the ticking time bomb, always in danger of being re-set, that is schizophrenia.
Kaye, R. (2014, January 19). Why I Still Hate Schizophrenia, HealthyPlace. Retrieved on 2019, August 21 from https://www.healthyplace.com/blogs/mentalillnessinthefamily/2014/01/why-i-still-hate-schizophrenia
Author: Randye Kaye
Whatever. Odds are they don't give a **** what you think. The person with schizophrenia probably thought of some deep **** that you refuse to acknowledge.
Y'all know about global warming, mass extinction, how ridiculous religion is. You won't admit it. That is the tip of an iceberg. Your family members schizophrenia may not even include the few topics I just mentioned.
Overwhelmingly the odds are that there is an honesty being prevailed.... And your family wants to know why they have to see this truth. They want to find the fault. Be careful what you do with that fault. It really does matter. To them. To all of us. To you.
I accept my diagnosis but I DO NOT accept my prognosis.
As there are billions of individuals on the planet so are there Trillions of forms of this illness.
My TRUE belief is that psychiatry is in the stone age. Yet necessary, they do not have grasp of the scope of individual manifestations.
I hate the psychiatric community, I feel beyond stifled by them.
If you take me personal success and weigh it against my psychiatrist assessments of me you will finds light years of separation.
MASSIVE progress on the scope the world cannot yet understand is needed for psychiatry until TRUE HELP for individuals fighting this illness can truly honestly and successfully take place.
Momma B's Hubby
I never know what to write on blogs about him because it is all so overwhelming... I do not know where to start.
I am glad and thankful for all who have posted because your postings help me to know that there are others who do understand.
I have suffered from anxiety since I was 9 years old but wasn't diagnosed until I was 18. My first experience with depression was later in life. I was lucky that time--the first medication tried, put it into remission.
In 2007 an incident at work pushed me into another depression. This time it is treatment resistant. I am currently taking 6 different psych meds. I have previously been treated with ECT. I am presently enjoying a break from that.
I wish you, Ben, and other family and friends all the best. Thank you again with sharing your experiences with Schizophrenia. It helps those of us with a mental illness understand other illnesses and how families are affected. More importantly, I hope those that are completely ignorant when it comes to mental illness will take another step toward understanding.
We're on the lookout too. Tim takes the opposite tack this time of year. He is more withdrawn, more easily irritable, headphones on 24/7, sleeping with a fan on even though it's 5 degrees outside for the white noise. Tim's longest ever hospital stays were in March, and every year as winter drags on, I get nervous.
Here's to hoping - for Ben and Tim this Winter.
Happy to say that today seems brighter. Ben seems to have balanced again, for now. Extra vigilance on our part re meds supervision may have helped. There are just so many variables.
Self- care, including getting help and hope, is a choice you must make to get through this. Sometimes it feels like the only choice. As the book progresses, more tips emerge that I help will guide and comfort, while being really clear about the downside as well.
My very best to you,
With thanks and hope, randye