My Mother Died From an Under-Researched, Underrecognized and Undertreated Illness

Tomorrow my brother and I will meet in Florida to clean out our mom’s apartment. She died sometime between Sunday night and Monday morning in her home, at the age of 64, alone, exhausted and utterly broken. She left a note I’ve chosen not to read for the time being. The toxicology report won’t be back for months, but I already know that she died from the disease of mental illness. It is an insidious and potentially fatal disease that is still under researched, under recognized and undertreated.

I feel fortunate, despite my long history of fighting alongside her, to be sitting here remembering beautiful sweet moments and wishing we’d focused on and talked about those more. Perhaps I knew they were mine to cherish, to nurture and take care of. Maybe knowing the memories of my life with my mother could quickly morph into something sinister and be used to hurt me, I protected them until now when I will need them most. Unpredictability was a predictable pattern I lived throughout my life with my mother.

But she was my mom, and I loved her.

Sewing at the dining room table, comforting smells in the kitchen, great music dancing on the arms of a Florida breeze swirling through the house, laughter and affection. She wasn’t the monster she once accused me of believing she was, she was sick and the very things she wanted most in life — deep meaningful connections and unconditional love — are the things her demons would not allow her to accept, like really take in, in ways that could have collaboratively created a revised narrative of her perception — of herself, of others, of the world. No matter how I said it or tried to show it and genuinely felt it, unconditional love wasn’t a gift she could accept, even from her children.

It hurts as a small child to know that “the mother” is hugely dependent on “the child” to meet their emotional needs. I had a graduate school professor that described this type of dynamic as “emotional incest.” I remember feeling I had just been punched in the gut from the realization. More devastating though was the horrifying discovery, after decades of trying to meet her needs, that the depth and breadth of them was infinite and more than another human being could fill.

The capacity to be authentic must exist as must the willingness to share those places with others. These are the very things that create relational connections. My mother rarely let her guard down. Vulnerability was too painful. She was characteristically not capable and went through life suffering the consequences feeling unloved, misunderstood and unsafe, always feeling deeply, desperate to fill the vast empty space inside. Emptiness consumed her… life became all about her and her needs, and she couldn’t see that pushing others away moved her further from the very thing that could have saved her and the love and acceptance she most desired.

My brother and I know more than anyone the extent to which our mom was haunted by mental illness. That type of battle doesn’t happen without collateral damage; in our case originating generations ago and morphing slowly as it plays itself out over generations, the legacy of trauma. Growing up with a mother who has a mental illness catches you on both sides of the nature versus nurture coin. Nature, challenging me to go against all the defenses put into place to guard and protect myself, some even before I had language. Pushing me to ask for what I need and to tolerate the discomfort of “the V word.” I always liked talking about the “V word” running adolescent counseling groups; helping kids to choose vulnerability or in turn risk the potential consequences. I knew early in life, in a deep painful way, that I wanted to (in my eighth grade language) help people not have to feel how I felt. The field of counseling was a no brainer given my temperament and aptitude. I am blessed every day I get to do my job because I view the educational journey I took to get to my career as my contribution to lessening the collateral damage for the next generation.

I care about this issue because it has been my story. I’ve seen and experienced the damage first hand. I saw my mom fight and claw her entire life even when she was exhausted, even when there was no one and nothing to fight, at least from what we could see. Eventually I realized the fight was inside. It wasn’t about us. I know how tired she was, how disconnected, scared and tortured she was. Perhaps her biggest gift to me is to truly make me a survivor. I hope she has found the peace she has been so desperately seeking. I love you mom. I’m sorry you suffered. I’m sorry I couldn’t do more. I’m sorry no one could have saved you. I’m sorry you weren’t able to save yourself.

Mental health is everything. It is entwined into everything we do, think and believe. Without it and in its poorest form, quality of life and over all life expectancy are significantly decreased. It is a cat and mouse routine where no one wins and everyone hurts and no pill can fix it. Intervention needs to happen early and we need to make services readily available for everyone in ways that don’t feel like another exhausting obstacle to climb. It is too easy to give up because for some the pain is that bad and the desperation that scary. There is no shame in psychological pain. It is important to pay attention to it and do your best to ask for what you need from those who can best provide it.

Reach out; talk even when you don’t feel like talking, seek professional help.  We all have mental health.

Author’s note: The University of Redlands, Alliance for Community Transformation and Wellness (ACTW) will be hosting Vibe, an interactive wellness festival February, 18th, 2016. Follow us to stay up-to-date on all things wellness and forthcoming festival details.

To learn more, get involved or make a donation to the Alliance for Community Transformation and Wellness (ACTW) please find here.

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