My mom passed away 3 days ago. So my thoughts may seem a bit jumbled. I am free flow writing and just capturing some raw emotions. I tried to edit briefly, but it is what it is.
The social norm would suggest that I should be very sad. But instead…a flood of other emotions are the reality. Like Relief. Confusion. Guilt. Mystery. And a yes sadness in recognizing her life has officially ended. Her anchor uprooted. And I have received so many beautiful sentiments and condolences which a greatly appreciate.
But this sadness is an unconventional and confusing sadness. I’ve already lived the sadness of a thousand little deaths all along the way. Sadness that she was not able to be what she wanted to be, what I and my brother needed her to be, what her grandchildren would have hoped her to be, what friends thought she should be.
My mother had schizophrenia, and honestly like 5 other labels that I didn’t bother remembering because in the end it didn’t matter. None of the doctors that used the fancy words were able to help her with any fancy methods on a long term basis anyway. She just had to endure it. A torturous life really in many ways. So many years lived in the shadows of darkness with momentarily lapses of reason and light here and there.
I have often said that living with someone with a severe mental illness is very much like living in the shadow of an eclipse. The person with the greatest need gets all the resources, efforts, support. Everyone else around them live in the dark and their needs are completely overshadowed.
Ironically…she died 1 day before the Super Blood Wolf Moon Eclipse. Upon further investigation – turns out she was born 2 days after a lunar eclipse. There are so many astounding analogies here – when I think about it.
Only those closest to us will even understand those analogies – and honestly – they are so shocking and horrifying I could not in good taste write about them here and now. But all the words in that title – Super. Blood. Wolf. Moon. Eclipse. Actually mean something and represent different, very hard memories in her life timeline. We’ll leave that right there. I have been working on a book that I may one day publish and finish and all those hard details may show up in there. Or they may not. Some things are better left forgotten.
One of the saddest memories was when she realized no one liked her “as is”…that she had to take all kinds of medication for people to even like her. We had the best talk in that moment. In fact, the rarity and authenticity of that moment caught me so off guard all I could do was acknowledge her sentiment and we cried together. What hell it must be to know the world does not accept you as is. It is strange that THAT is one my fondest memories of her. I realize now – it was because I was chasing the light. In that moment, the clouds and darkness opened up and I had a real, honest, brief moment with the authentic her. Something I craved my whole entire life. And it was gone in a flash.
If you are into photography at all, you know what I mean. When I am doing a nature photo shoot and needing direct light to make the subject really pop – it is like a waiting game of chasing the light, waiting for the light. You have to be extremely patient and be ready for that moment when the sun does appear. It especially true when trying to get a great macro shot of a dew drop or icicle. And on those cloudy days…you wait and wait…and wait. And you may only get a few moments of bright light and just when you start shooting like mad – the clouds cover over again. That is a lot like what life was like with mom. A long string of moments in the clouds and a brief glimpse of light. And if you are not ready for that light you may squander it.
This may be the very reason I was drawn to macro photography – the very symbolism of it is pretty amazing. For me – macro photography is all about finding the beauty in the ordinarily overlooked moments. Finding beauty in the chaos. The ordinary. Even the most unsuspecting places of all. People say I have a unique perspective and see the world in a different way. You bet I do. I’ve had to learn that as a survival technique and apparently it found it’s way out through actual photography.
So what I wish I could have said in that moment – I wish I could have been better prepared for that moment of light – was that the medication gave her a chance to be who she really was – not the other way around. She was witty and sometimes downright hysterical. She was very smart. And what some of the meds did was give her a chance to let the real her come out. What I wish I could have said was that the disease is NOT the real her. The darkness that takes over and used her like a puppet was not the real her. Just like any other disease…the failing kidney or heart is not the person…the medication gives the patient a chance to be somewhat normal. Not the other way around. I wish I had been ready for that moment and been able to say that to her.
And this is the take away for anyone reading this – and its huge. This is a hard concept, though it should not be. The actions of someone with mental illness is NOT who that person is. Those are symptoms of the disease! The person is literally being hijacked behind the foreign actions their chemically imbalanced brain is carrying out.
When a person has a seizure or a blood clot or any other terrible thing – we don’t just judge the person on that moment. We don’t just say “What a weirdo – look at them flopping around like a maniac”. I can’t even have a conversation with them. NO WAY, right!! Not in a million years! So don’t judge the mentally ill for moments they are not acting right.
The hard difference is that with mental illness it can come and go so sneakily and without warning that it is easy to confuse the illness with the person. When they are somewhat normal one moment and then hurl debilitating insults at you the very next – it is very hard to understand. And witnessing that as a child – it completely warped my sense of love and trust without me even knowing.
Often time you just don’t know where they end and where the disease begins. And the person can live years being mentally ill and not even know it. And by then they probably burned SO many bridges by being so destructive, belligerent, needy, confusing, infuriating and downright exhausting that you really don’t even care anymore.
I had a 10 year period of life where I had to distance myself from her – in order to survive and get my own head right – so I get it. During that time I had to sort out my own mental illness that I did not even know I was carrying around – this is what I mean by being eclipsed – living in the shadows. I suffered severe depression from years of living in those shadows and not addressing my own needs. Living in complete denial. Knowing something was off, but in comparison to her – I was pretty normal. Living in the darkness of that eclipse almost killed me. So I needed to create some boundaries and distance to even start to heal and be anything positive in the world and for my own kids.
Again – I liken this to an analogy to photography. It is about 9 degrees outside right now and we had an ice storm so I was out there trying to get some shots of the beauty of it. With the windchill it is about 11 below zero and my hands confirmed that. I could only handle having my hands exposed for about 2 minutes or less at time before they started freezing up to the point they couldn’t move. I was so caught up in what I was doing that the at I didn’t even notice my hands freezing up. They were nearly completely locked up by the time I recognized they were on the verge of frostbite.
This is also what it was like with mom. And take note of this as well – when dealing with the severely mentally ill – especially a close family member – you need to be careful of how much you expose yourself to the situation. You need to take cover sometimes. And there is no shame in it. You have to get them the help they need, and you need to get YOU the help you need.
You cannot change the situation. No more than I can change the weather. You cannot fix the person. All you can do is manage how you deal with it, handle it, and how much you expose yourself to it. How you take care of yourself through it as well. If I neglected my freezing hands long enough – there would have been long lasting consequences. Know when to put your hands in your pockets and take shelter.
And when that wind kicked it – it was much like those moments when the disease would take control of her and she would hurl the most debilitating of insults at me. Her words like icy negative 11 degree weather freezing up my heart and soul. Twisting things into something they should not be. Throwing icy daggers into my formative insecure psyche that left enormous holes and scars. I had to take cover. Shelter myself from the situation or I would have surely not survived it.
And then there is the guilt that you experience because you DID take shelter and set up boundaries. You feel guilty for not being there more…not doing more. The could haves, should haves. The beating yourself up. This is a game where there is no winning.
Honestly, it’s is very confusing and very hard to navigate, and if any of you out there have a relative with a serious mental illness (not just mild – I am talking serious) you know exactly what I am talking about. You are probably not on great terms with them yourself. Because they make it hard to love them. And even the moments they are acceptable – it is tempered with caution – as if handling a wild tiger that is giving you a hug. You may enjoy that brief moment immensely, but know that at any moment they could reach out and rip your heart out. And 9 out of 10 times they do.
She had windows of reason, windows of joy and laughter. They were great moments. Belly laughs. Those glimpses of light let you know she was still there. But at any given moment her mood and thoughts would be hijacked without notice. Literally the person you were just laughing with can give you a cold hard look and start yelling at you and belittling you with every fiber she had. Unsettling is an understatement. As a child it was completely life altering. Those were the times when it was hard to separate the disease from the person. Those were the times when, as a younger person, I mistakenly labeled her as a monster. I didn’t know any better.
I remember thinking sometimes that I wished those glimpses of light were not even there. Because it made it even harder to process and separate out. It made it harder to understand what healthy love looks like. What love even is. In fact, I went on and entered into many unhealthy relationships as a young adult as I tried to navigate through that and sort it out – which only added to more heart break. Those very glimpses of her kind and loveable character are what kept me coming back and setting myself up for more abuse. It set a terrible precedent.
My childhood was just a very different childhood. And all the while I was trying to pretend like everything was normal as school. Put on my mask to hide what – at the time I couldn’t even accurately describe or make sense of.
Life with mom – there were the episodes where she would slowly start getting sicker and sicker – which I would come to find out later was when she stopped taking her medications. And at these times she would be completely out of her mind. No rational thoughts. Incoherent ramblings, pacing floors, heavy breathing, erratic movements and nothing she said during these times made sense. These would end in long or short stays in the hospital.
Then there were the extreme times when She would have hallucinations about aliens coming in through electrical sockets, or Russians doing xrays through the floors upstairs – just complete nonsense, but as a child when you are forced to stay in the closet in the dark for hours to be kept safe from the aliens. As a child I kind of new her imagined things were not real, but it was still scary as hell.
And of course there were the very dramatic moments of attempted suicides. Some were overdoses. Others were graphic and too horrific to talk about here. But those are the moments that threw my brother and I – him probably even more so – into complete darkness. Total and complete eclipse.
But the majority of the times were like a death by a thousand tiny papercuts. Like she was there, but not really there. Life behind the clouds…in the fog. Partial eclipse. It was like she couldn’t filter or sort out important events from the mundane. She wasn’t aware or even capable to acknowledge and truly enjoy the special moments happening right in front of her that every mom should have the privilege of enjoying. Specifically I remember putting my wedding dress on for her for the first time – you know that moment you are hoping for – a gasp, an accolade of how beautiful you look. Unfortunately I never got that moment. She never got that moment. She just kept talking about something completely insignificant and barely even looked up. There was never even a break in the clouds. She missed it.
My older brother suffered the worst of it. For reasons I’ll never understand she had it out for him from day one. There was a lack of a bond…a noticeable tension, missed connection, more than an inconvenience, more like a nuisance or toleration. Contempt. What an awful burden to live under. To this day, he is the hardest working person I have ever known. Was it because he was a male? Did she have such contempt for men that it skewed her ability to love her own son? I’ll never know this answer. Those are scars he will bear for a lifetime. That is the dark side.
On the light side – and in lieu of it, or in spite of it – or maybe just because of who he is – he went on to become a great physicist. He overcame such odds and studied like a relentless madman to become one of the best in his field! Developing some of the most sought after lasers on the face of the planet. He tackles issues in an unconventional way. Approaches problems and finds solutions by seeing the problem in a different way than most scientists. In other words…sometimes he goes rogue. He finds a way. Even in the dark. He’s a bad ass.
As for me – she loved me in ways she couldn’t love him. It’s not something I was fully aware of as a child, but it is the clarity of adulthood. But because she did love me, she also couldn’t let go of me – even when she should have. Just because she loved me as best as she could in her own limited way – doesn’t mean she could nurture, provide, protect and guide me. Sadly, she ended up putting me in harm’s way with good but warped intentions. I suffered some unimaginable consequences just from the lack of awareness or ability to assess and protect. I was also the brunt of her episodic anger and sometimes hallucinations. Those are my scars to bear for a lifetime. That is the dark.
But on the flip side – the light side. I see things in unconventional ways as well. Where my brother has used it in science – I use it in art, music and photography. I am just now fully letting myself discover this.
So – light out of the darkness. And light in the light. I am not saying my mom was darkness. To be clear. Her disease was the darkness. And it held her captive for so many years. But now she is free of that! We are free of it!
Her struggle was real. It was a life long one. She endured incredible tragedy as a child herself – and to this day we wonder – did those event trigger her own disease? Or did the disease cause the tragedy and it simply carried on through the genetic bloodline? She witnessed brutal violence against her own mother that ended up taking her mothers life. I won’t go into more detail here either because that is a whole different story.
I am simply writing this mostly for me. Yes. To get it out. To tell a little about the very extreme childhood my brother and I endured. To open the curtains and let in the light on a situation that most everyone would like to keep hidden in the dark. And that doesn’t help anything! To pretend it never happened is actually more damaging than just acknowledging it. My mom’s life was a huge struggle bus! She fought her way through the entire time! She was a true wounded warrior.
So I am writing it for her too! To give some small insight to what hell she lived. The disease was relentless and pursued her always. It was like she was standing at the edge of a wild ocean getting pummeled with wave after wave. She kept getting back up only to get hit again, and again. And anyone standing with her at the time got hit with it again and again too.
I write this out of love. And pain. And the confusing space of where those two emotions meet. It is a very cloudy and dark place.
And I am writing this lastly for anyone else that may have experienced anything like this. With a relative of some kind. You are not alone. And there are more of you than you will believe. Because we all hide it. Pull those curtains, put on that mask. Pretend all is normal. Carry the weight of the world. Smile. “Oh I’m great, how are you?” we reply in hall ways and at water coolers.
I loved my mom. I hated the disease. And I will not be afraid to talk about it, fund it, support it and be the voice for it any longer.
There will be no service for my mother. She moved so frequently, and lived the last years of her life in somewhat seclusion – there is no need for it. So there is nowhere to send flowers or cards or anything. But if anyone reading this is moved and want to do something – you can make donations to one of several places in her memory.
Good Samaritan Behavioral Health in Dayton Ohio
Stoneridge at Woodbury Nursing home, Hampstead NC
And most importantly – if any of you reading this recognize your own need to get some support or help – please do not ever hesitate to do so. Mental illness is on the rise in both adults and children for multiple reasons. And open communication around the topic is increasingly important.
Nationwide Children’s of Columbus Ohio is building the largest behavioral health facility in the nation currently and launched the On Our Sleeves campaign. It is a much needed and bold move which I commend and am very thankful for and also an initiative very worthy of funding.
Start the conversation.
Address it head on.
Open the curtains.
Sweep the dirt from under the carpet.
Step into the light.
Change starts now.