I’ve been somewhat quiet on this blog lately because…well, I really wanted to try to keep the majority of posts upbeat and positive and all about how well Aradia is doing since we got help. But I’d be lying if I told you that. The truth is, neither she nor I know from one moment to the next how she will be feeling.
One day I’ll drop her off at her part-time job and she drags herself in but comes bouncing out later when I pick her up talking about how she loves it. The next day she might go in perky but a few hours later she will send me three texts as I’m driving to pick her up asking me if I’m almost there. Then she will shuffle out sadly and tell me she’s been depressed most of the day. No particular reason, she still loves her job but can’t escape the ever-present sadness.
One day she’ll talk far too much and very loudly and want to stop at the store and spend every dime she made in tips and carry on a conversation with the clerk that is so long the people behind her in line start getting antsy. She’ll come home and ask me to dance with her on the Wii. She might come up with ideas that would never be practical or advisable in reality. Or she might be extremely irritable (for her) or even angry with us. Sometimes she doesn’t even remember. She might even start having auditory and visual hallucinations again. She might become extremely anxious again and worry about what will happen to her if I die first. Who will help her remember her medicine? I have learned that is an example of mania.
The next day she’ll neither care how much she made nor if she ever does anything with it. She’ll get in the car, put her headphones on, lean her seat back, close her eyes, and either sleep or pretend to be sleeping. Some days it’s hard to get her to look at me or give me more than one word answers. And she will and act look so very forlorn (one of her favorite words). Nothing I say or point out touches her or brings a smile to her face. Sometimes she shows no emotion whatsoever. Completely in her own little world.
Sometimes she will hug me and laugh and give me that beautiful smile and I cherish every fleeting glimpse of that and sometimes she will sleep. And sleep. And sleep. We are still getting her medications adjusted and from what I read on various support groups this may be a regular thing. Increase the dosage on one, stop another completely, keep the same dosage on the third. Then bring the second one back at half the dosage. “How’s she doing?” Great, I’ll tell them, but that was yesterday or two hours ago, and I spoke too soon.
So, I’d be lying if I told you it’s all better since we got her diagnosis. It’s a day by day, moment by moment guessing game. But I believe in her and I and her family will always believe in her and we know she can beat this. I know she is capable of handling this. Of living a full and joyful life. Of staying strong. When she can’t tell me what’s going on I turn to the online support groups to gain insights from those who have Schizoaffective Disorder and other brain-based dis-eases and those who care for them.
Here is what I’ve learned: Those that have family or friends that never give up on them have a better shot at controlling this sadistic thief of peace. Those who believe in a higher power cling to that faith to get them through the darkest periods. Those that do their best to help and encourage others even when or especially when they are hurting seem to keep themselves under better control. Those who refuse treatment, don’t believe they need treatment, or are unable to get treatment (meds and therapy) suffer the most frequently and the longest. Many of them become addicted to illegal drugs or alcohol instead, self-medicating whether they realize it or not. I’ve learned that up to 50% of those with this disorder commit suicide. FIFTY PERCENT.
I’d be lying if I didn’t say that statistic chilled me to the bone. In the last week three women have posted that their child or father or grandfather was one of those. But so many of the amazing, incredible, indescribably beautiful people with this disorder rallied around them and comforted them and offered them words of wisdom that only they could know. I’ve seen the SDA people lift each other up and brag on US, the caretakers and provide encouragement to US. They remind us to never give up hope either. They’ve thanked us for being there when they felt completely unlovable. When some of them became violent or self-destructive or confused or even disappeared for years. It matters they say.
So many of them have families or friends that won’t even bother to learn about their disease. Their loved ones begin to distance themselves, to tell them it’s just for attention, for pity. These people do not want pity. They want someone to LISTEN. They want someone to remind them what they are worth and point to the light when they can’t see it anymore. They want people to at least acknowledge if not understand what they are going through. They want people to not look at them like they are freaks. To not avoid them or be afraid of them. To not stop inviting them, even if they never come. To give them something worth living for. To take the time to check on them or remind them about their appointments or medicine. To give them rides because many if not most are afraid to drive. To not be ashamed of them. To not forget them on holidays or their birthdays. To tell them about our own lives even if they seem like they are not listening. They are. They are just struggling to hear your voice over all the other voices and noises clanging in their heads. To not take it personal if they can’t handle a commitment or are afraid because so many people have left them already. To notice the accomplishments that seem small to us but took every bit of resolve and energy they possessed at that moment.
They want people to talk about IT, not them. They want people to believe them. They want you to understand that the mind they were born with is their own worst enemy and they battle with it each minute of every day. Even in their tortured and erratic sleep. They want to be respected. They want us not to take it personal when at times they cannot love us back because it is all they can do to keep their frayed pieces tucked in. They want us to realize that they are not lazy. They are tired to the very core of their soul. That they are warriors but they are worn and battle scarred. They want foundations and fundraisers for research to cure or prevent mental illness. They want people to care enough to learn and share with others what they are dealing with. They want to not be thrown in jail when they need medical and psychiatric help. They want peace. They want to be loved.