There’s a sadness that gets into your bones. It climbs on your back and weighs you down, seeps into your lungs and clenches on to your every breath. It lays in the empty space where your loved one should occupy, it’s the dead air on the other side of a telephone line. It takes the song out of your voice, and the words out of your hands making it taxing and difficult to get it on paper. That is the sadness, if you’ve ever felt it you know what I mean. If you’ve never felt it than I am happy for you. It comes once you’ve gotten too comfortable, when your shoulders start to come down, and you begin to feel like you can actually breath again. This type of sadness doesn’t just creep up on you, this is the kind that hits you like a brick and leaves you reeling, trying to find your bearings. It is the caregivers sadness.
I don’t have a mental illness but I live with it,
I am the wife of mental illness, I am the mother of mental illness.
I have been silent for the last couple of weeks, so overwhelmed from the current state of events that have taken over our family. The depths of my emotions so cutting and deep its hard to put into words. I am numb I feel like the wind has been knocked out of me, I feel beat and broken. It’s my own fault, when things are level you have your everyday ups and downs you take those good times for granted because it just becomes normal. You forget how bad it can get when your loved one is not well. We know that life with mental illness is unpredictable. One day everything seems fine only to come crashing down on you the next. There are of course the signs that you’re heading for imminent disaster, but by the time you begin to notice that something’s off often times its too late. The disease comes roaring at you like a lion, your caught before you even had time to run. We are caught.
With the mentally ill when things are good you start to get a false sense of security, you start to breathe a little easier. Hoping maybe this time everything will stay level and we can just be, but mental illness is cruel it doesn’t work like that. Eventually it comes creeping through the door. Bipolar came pounding on the door, I begged you not to answer but you let him in any way. He took you far away with him and in your place left the madness.
We’ve been for a long time, level, balanced navigating the course, it lingers in the background the mental illness, it’s present in our lives but it’s certainly not the focus of it. It’s just a chronic condition that is managed with medication. Much like any chronic condition you take your required medication, regularly check yourself to make sure your on the right course, stay up to date with your doctor, live a heathy lifestyle and that’s it. He’s done well to keep it at bay, this isn’t the kind of thing where he’s non med-compliant, in and out of hospitals trying to find the right formula. He provides for that family and holds a job he’s a skilled worker. He knows his limitations and I’ve done my best to protect him as well as I could from the everyday stressors and burdens especially since Ranee became ill. But it wasn’t enough.
You can only help, offer advice, provide support but you can’t control someone else’s thoughts and actions. You can’t live inside someone else’s brain to really see what’s going on in there. How it processes information, or reasons on what they feel is best for them. You can only trust that they’ll make decisions based on the well being of everyone not just themselves. The mind can be deceptive, but a mind that’s been overrun by mental illness is a battlefield of sorts. We’ve been through so much together, things that can test the bounds of a relationship loss of a parent, loss of dear friends, financial stresses, teenagers that question a faith they once clung to, we’ve ridden the storm with a sick child, we did that together. We weathered the seasons of change and the storms of our life together. Now for the moment it feels I am weathering this storm alone. I am fighting for him and he fights against me. In his delusion I am the enemy, not trusting his judgment that he’s okay. He is not okay, we are not okay.
How do you care for someone who doesn’t think they are ill? Caught up in the grip of sickness they believe they are fine, blind to how far off course they’ve become. The ones closest, bending over backwards to care for their needs take the brunt of the abuse. For the moment their world revolves around them as it rightfully should they are sick. There’s little appreciation, or recognition most of the work of the caregiver goes unnoticed while the faults are layed bare. As much as you want to place blame, they should have stayed on the meds, they should have said something sooner, they should have….it doesn’t matter because you just have to deal with what’s in front of you, you can’t reason with someone who is not well. Your voice falls silent. Except you can’t stay quiet, it is your job to be the voice of reason, the doctors look to you. Your loved one is looking to you to be their voice. But in sickness they don’t like what they hear. In wellness there are things that you discuss, an emergency preparedness plan of sorts. They ask if you start to notice them doing this or acting this way, the red flags. Say something do something. But sometimes it’s just too late. He won’t remember half of what was said and done when the mania ultimately subsides. I will be left to sort out what the madness has done in impulsiveness. He won’t remember but I will. And love will cover that.
Being the spouse of someone with a mental illness is so different from being a parent to a mentally child. A child looks to you for guidance and direction even if they resist your help it is your responsibility to parent them. A mentally ill spouse they don’t necessarily realize just how much they need you, instead they may resent you a power struggle. When in reality this isn’t a position you would readily step into, it’s part of your vow. In sickness and in health. Through thick and thin but it’s difficult, painful to watch, it can be downright ugly. In the course of recovery there are glimpses of your loved one, they are there but suddenly you don’t recognize them as the person you know and love. The common thread whether it’s a child or an adult is the process. It doesn’t just happen overnight it takes time for the medication to regulate, trial and error to get the right cocktail. It’s frustrating for everyone.
I can’t say it’s not a heavy burden to bear, I am tired in so many different ways. It’s a juggling act, between demands of the children and care for my husband I’m hardly keeping everything up in the air. A dear friend gave me another perspective that really struck me. As difficult as it is on you, as hurt and betrayed by their actions as you may feel it’s a terrible sickness to endure. They are sick, they are lost in their heads, their actions truly are not their own. Think of the good times when they are well, who this person really is at the core of their existence. The man who I love and adore would never intentionally hurt me or our family. And when he is well again and the effect of his actions hit him, he will need me to help him resolve that too. I love this man, I’ve built a life with this man, I adore this man, his heart is pure gold. He has shown me love like no one ever has. Those are the things I have to set my heart on. It’s difficult to think of those things at times, in the midst of it all. I want to fall on the ground and cry until there are no more tears left, I want to throw things and scream, I want to curse and yell up to the sky Why? Why us? Why now? I am so tired and broken down, every once in a while I’d just like a minute, just one.
Can I just have a minute to fall apart?
Life doesn’t stop for the sickness we just navigate around it and try to do the best we can for the sake of the family. We had a pretty good couple of weeks new beginnings, sending the boys off to new grades and starting down the home school path with Ranee. She has reached so many milestones, she is blossoming, she is learning and growing and learning and using her new-found coping skills. She decided on her own that she wanted to start dance class again. She did dance class as a young child about six or seven years old. It was an enjoyable experience but nothing she was really passionate about. She had no qualms about giving it up she hated wearing tights anyway. But just recently she brought it up that she wanted to dance again. This is huge, our anxious child is taking interest in something again. This is good, this is good. But another expense on an already tight budget, so again we rearranged made some cutbacks to enable her to do this. So despite the constricting tights and having to wrangle her hair into a neat bun she was motivated. We practiced for weeks wearing tights as her occupational therapist recommended, we painfully and slowly detangled her hair so putting it into a bun wouldn’t be too difficult. She was ready. And so she went, and came out in tears the first day, the anxiety and the low self-esteem too much to bear, but she didn’t hallucinate. We talked about what we could do so the next class she wouldn’t be so anxious. When you go across the floor think in your head with every move,
I am good, I am strong, I am Awesome
her ballet class came two days later, I waited in the car outside the studio ready to rescue her if she needed me. But she didn’t need me,
She is good, she is strong, she is capable
she came out with a huge smile, and told me all about how she did it when it was her turn to go across the floor, she held her head up high and said her mantra. It was good, it was all good until the sadness came to our door. And you know what it’s still good for her, because I make her world what it is. I can control her world despite the chaos and the fear that resides in me, I can give her something to smile about. We’re all navigating this new set of circumstances that we find ourselves in, the chaos just comes no one invites it in, it just happens. But it’s what we do with it that matters. One of my friends was telling me how strong I am for dealing with everything we’ve gone through this last year. For carrying on under such a heavy load, I said I’m not strong I have no choice in this, I’m just doing what I have to do. But she reminded me that isn’t true, some people would find themselves in the bottom of a wine bottle, or laying in bed for days, or turning to other negative coping vices.
So I’ll take the complement maybe I am strong and I am capable even though most days I just feel like I’m faking it. In the caregivers sadness there is a silver lining
it’s that little girls smile as she stands with her head held up high with her hair in a bun.
Its my babies sweet kisses and head nuzzled in my neck.
Its my sons arm around my shoulder telling me mom turn that frown upside down.
It’s the twinkle in my child’s eye and the reassuring head nod mama you’ve got this.
It’s the late night text message from the college dorm saying I love you.
We don’t know from day-to-day what the next day will bring, what set of challenges we may have to endure. The main thing is to just keep going. Even it’s just going through the motions of your life. Navigate through the chaos with your tears but also look for the reasons to smile. Even if it’s something small find it, hold on to it, cling to it better days are ahead. They have to be.