TURNING THE CORNER
Melisande Randall

My mom has dementia now.  I am resentful that after a life time of growing up and under my mom and her paranoid, schizophrenic delusions and mood swings, that now, we are left with the needy shell of a human being.  It is humanity and duty and respect that give me the strength to set aside my difficult childhood past as I change my mother's soiled clothes, help her to the toilet, clean her up, and cook her meals, much like she did for my sisters and me when we were kids.  I have to remind myself that Mom "wiped your butts" as southerners love to remind children of their duty to take care of the older generation.  My mom cooking and cleaning and running errands has got to count.  Her motherly duties fulfilled have got to matter.  Do I really need to think of this as being "my turn" to reciprocate the favor of being raised?  It is simply the course of life.  We do for our family regardless of who came first into existence.

But for some reason, no matter how much I count the blessings and positive things from my childhood, like mom showing me how to cook, and mom driving me to school though oftentimes fussing about life to the point I was bolting out of the car to escape her tirade, and mom treating me like a doll in college, coming to class sometimes to take notes for her half-blind daughter...no matter how much I live these highlights, why do I cringe each time I walk up the street from the bus stop and reach my mom and dad's avenue?  Why do I hesitate and get resentful as I reach for my keys to open the front door?  Why do I plan in my mind just how fast I can come in and bring dad his paper and cook a meal and do my mom's medications and clean her up just in enough time to get out of there in ninety minutes or less? Why am I just going through the motions?  Why don't I feel joy in helping the two people who did more for me than any other two people did in providing and caring for me?  Why can't or won't I let my Christianity supersede my pain?  Forgiveness is letting go...but for some immature if not selfish reason, I can't be grateful that my mom is still on this planet.  I feel awful typing that.  I have friends who have lost a parent.  I could cry admitting how honest I feel in sharing this awful thought.  Why do I feel this way?

It goes further than the fact that Alzheimer's Disease leaves its victims in a vegetative state eventually.  My mom is just a step above that.  I don't like to see it now that it is getting severe.  But I think that beyond the loss of dignity as one loses control over their bodily functions, I am not happy that my mom never got treatment and that she lived life without knowing how happy she could have and should have truly been.  Undiagnosed and untreated until we learned she had dementia, here we are having gone from the transition of schizoaffective disorder, straight to dementia.  I feel like now, what is the point of it all as Mom can never be treated for the former disorder and know its benefits.  So what is the point now?  Excuse redundancy as I have to repeat things that resonate with me while I write.  I feel like we in the family have all been cheated but it is not my place to say who should or should not still be here on God's green earth.  I think God wants me to come to terms not just with the fact that my mom was ill and did some pretty awful things that she probably could not and refused to control, but now, He also wants me to accept this Alzheimer's thing.  Why do I have to accept all this stuff?  It is selfish because people have to accept all sorts of things like cancer, death, drug addiction, and abandonment. But it just seems extra cruel and challenging to subject children to the lessons of being raised by mental illness, and then have the affected parent, move right on into a state where they don't even remember all the crappy stuff they did!  Why am I having to come to terms with this?  I know it could be worse....BUT WHY WHY WHY?

So when   I stop and hesitate as I walk down the cross street perpendicular to the avenue where I grow up, I have to swallow a lump that rises in my throat each and every week that I come to my parents' to fulfill my care giving duties and I think of my care giving visits as taking yet another plunge off the deep end diving board of a pool that I do not like to jump into.  What mom and dad did for me has got to count, it has got to matter. But apparently, the negatives outweigh the positives.  My parents fought daily as I was coming up.  And their arguments were loud.  And I left for school a nervous wreck virtually every morning of my life and I returned home with this sinking feeling that there would be more fighting between them when I got home, and guess what?  I was almost always right, like 95% of the time right, maybe even 98%.  I endured a lot of unnecessary verbal and physical assaults as my mother's frustrations got the best of her.  It was unreasonable, unkind, and deep cutting.  Daddy did the best he could to protect me.  But unfortunately, it wasn't enough and it sure was not successful.

My dad is in a wheelchair now.  He still has his faculties, but he is defeated by a life where he repeated the patterns of his own upbringing by a schizophrenic mother and alcoholic father.  How did he somehow manage to marry a woman with a mood disorder, and then let himself, succumb to the powers of a bottle in order to cope just like his father did?  My mom, she is almost unable to walk and her eyes are clouded over as the medications keep her sedate so that she won't be combative each and every time we need to bathe her or sit her down to eat.  The medications are totally necessary in my mom's case but her once darting and sharp eyes, are now dull and unsettling.  I get a smile out of my mother once in a while and I think that is one of the few things that helps me turn the corner and walk four houses down to the home that I literally thought of as a prison when I lived there.  I have to bring back memories of my mother's gardening skills that brought forth colorful roses, and bountiful fruit trees, and fragrant foliage.  She channeled her energies into such wondrous creations.  But now the lawn is halfway dry and the flowers that bloom are only doing so as nature has its way without the guidance of my mother's hands and clippers.

I think of the smell of fried chicken and boiling greens and baking corn bread when coming home as a child....but now, when I open the door to the back porch, I am overcome by the fumes of piss and garbage.  I remember my mom wiping down walls when I now clean and wipe up what she no longer can.  And so I know my mom kept a clean home when I see things in disrepair.  She prided herself in holding that house together and keeping it spotless.

Sometimes a blog has a really distinct message or a really thought provoking story to relay.  But today, for me, I just needed to vent a little bit because for the past two years or so, I have forfeited church on Sunday mornings to pitch in at my mom and dad's house because they are in failing health.  I am needed two mornings a week and that really isn't that much, but for me, it is so draining and it is so hard for me to turn that corner as I am walking towards the home of my childhood.  I have to hold on to memories of normal things like plants in the yard and Mom's meals being prepared...that aroma which  neighbors could smell cooking up and down the avenue.  If I don't remember the things that gave me a sense of normalcy, then I won't be able to do what I do.  I have told family members that it is not out of love, being a parental care giver.  It is as I have already admitted, out of a sense of human need and respect, and maybe even appreciation for how I was cared for in the ways my parents only knew how.  But I have a hard time bringing love into it.  Nonetheless, I still hope that humanity and respect and duty count for something.

Dispatches from Dreamland

On finding—and not finding—my mother

by Marin Sardy

29 July:

Outside the air is thick with mist, a mist that winds through the low green islands across the channel. The town of Ketchikan, Alaska, is wrapped in a light rain that doesn’t fall so much as it materializes out of the air, making the place feel a bit like the inside of a snow globe. I have a sense that this is its own world, separate, secret. It is easy to see why it might appeal to my mother, who lives here now.

Two days ago I arrived in Ketchikan, which is remote and accessible only by boat or plane, hoping to find her. I hadn’t seen her in about twenty months, and hadn’t spoken to her since Memorial Day of last year. Now I was coming to visit her and I hadn’t heard back from the letters I’d sent. I could only assume she had received them and was waiting for me. For weeks before I flew in, I fretted about her silence. Since she has no phone, I sent her four letters in three months telling her I was coming to see her, providing all the information I could think to hurl at her. Flight number, arrival time, hotel location, departure date. Mom, I’m coming. Mom, I’m coming—

But no response came for any of them. As the time grew closer, I told myself it didn’t mean she wouldn’t be here when I arrived; most likely she was getting ready for me and looking forward to it. This is her way. I can’t count how many times I’ve prepared to go see her, whether in the same town or not, when the closer the time came, the more she backpedaled. “I’m not sure it’s a good idea to come over now,” she’d tell me. “It’s getting awfully late in the day.” Or, “Are you sure you aren’t too tired? Maybe it’s better to just skip it.”

I’ve made a habit of dodging or just pushing past these objections, knowing that she’d be happy in the end if I just stayed with it. Still, the ritual touches a deep, old fear. As a child I often had a sense that she forgot about me when I wasn’t physically present, that she lived just a step away from deciding not to bother with this whole mother-daughter thing. I suspected that even if she enjoyed being a mother, maybe she just didn’t quite enjoy it enough. She always seemed liable to slip through my grasp. Her mind was perpetually somewhere else, and often she followed these thoughts to distant places she barely spoke about when she returned. North Africa, Europe, New Orleans, Hawaii. I sensed she could flee at any moment, be gone. And that’s how it was whenever she left town—usually for only a week or two while we were staying with our father, but once for six long months. She wouldn’t mention she was going anywhere and then would call from someplace far away. She could evaporate like that. And I, her nervous second child, was never certain she would still be here tomorrow.

Now, as an adult, it’s obvious to me that she was devoted to us, and that being a good mother was by far the most important thing in her life. But it wasn’t obvious then. I took for granted the million small ways she cared for us, however haphazardly.

But despite my mistrust, she always came back, so I knew it was unlikely that I would come to Ketchikan and find her gone. Yet the possibility, and the absence of any response letters, ate at me. I would be stuck here alone for four days if she wasn’t here. The hundreds of dollars it cost to get here would be wasted. I was too anxious even to get angry at my mother for making it so hard.

I looked for her in the airport and my stomach dropped a little when she wasn’t there. So I made my way to the hotel and, as I was waiting to check in, I turned and saw her through the large plate glass window, walking on the other side of the parking lot. She walked toward me, not seeing me, then veered into a coffee shop. I started bouncing around in agitation, and she popped back out and turned toward my hotel, but then stopped and headed in the opposite direction. Afraid I was about to lose her, I asked the boy at the front desk to watch my backpack before bolting outside, calling out to her and hopping the landscaped traffic berm to get to her.

“Oh Marin!” she said, turning back toward me and looking flustered a moment before breaking into a smile and opening her arms wide for a hug. “I was just trying to decide what to do.”

* * *

30 July:

Over the three days my mother and I have spent together, walking the streets in rain jackets, pausing at gift shops and totem poles and whatever strikes us as interesting, I’ve begun to feel that she has slipped further away from me in the time she’s been alone here. In more than a year she has had no visitors, made no friends. Inside her own head uninterruptedly for so long, her delusions have pushed out more memories than ever. 

Earlier, as we sat together in my hotel room, intermittently chatting and watching TV, she said to me, “Marin, where did you grow up?” I stared, feeling something rising in me. When I answered, my voice was demanding and maybe a little bit pleading. “I grew up in Anchorage,” I said, and in the pause before she replied I felt all the bafflement and unknowability of schizophrenia pressing into me, compressing the air. “Hmm,” she answered. “Well I guess I knew that.”

I have rarely spoken with my mother about my childhood. The main reason, I think, is that her illness, unacknowledged by her, was the force behind most of its miseries, and for many years I couldn’t see past that. But on this trip I brought some old photos I found in my father’s house, images of my Alaskan youth with my siblings and with her. There was a small square photo of my younger sister and brother in the driveway by their tricycles, looking about four and five, standing together as if powwowing. There was a picture of the four of us in winter hats and puffy coats, leaning into each other in the white yard, our jeans caked with snow. There was a shot of my mother and the four of us, all quite young, on a white front porch. We were dressed in red and she stood behind us, slim and grinning. When I showed her this one she studied it for a few moments before declaring in utter surprise, “Oh, that’s me!”

“And there you all are,” she continued, “Alicia, Marin, Adrienne …” It was as if the existence of that whole world had suddenly reasserted itself in her mind, after a long slumber. I realized how rarely she thinks of our origins, and the fact that I came from her. Perhaps, it strikes me now, she doesn’t know all the time that she raised me.

Looking around her little apartment, I notice there is nothing in here that is more than a few years old—if that. She so regularly purges her belongings that in her life now she comes across no real evidence of her past. Everything is bright and novel, the reflection of this moment’s fascination. Right now it is Alaska: She’s got a stuffed bald eagle, socks stitched with forget-me-not flowers, and a salmon refrigerator magnet. In her daily life she sees no artworks her mother gave her, no mementos from old travels, no dishes used for decades, no baby pictures of me or anyone.

I call to mind that several years ago she began telling me I was “a good friend,” and asking me if I might call her by the new name she’d chosen for herself, Mara. “I’m just gonna call you Mom,” I said, annoyed. Only now does it hit me that maybe this was the beginning of a process through which our mutual past—the one in which she was my mother and I was a child; the one in which she brought me up and protected me as best she could—came to be shrouded in a foggy landscape in which only occasionally does the truth peek through.

Off and on for more than an hour, she describes some of the things she thinks about in her free time. Her delusions are as elaborate as ever, and as hard to pin down. Listening to them is like following along as someone recounts a long, meandering dream. The details don’t stick, I find. Without the laws of physics, or often any hint of metaphorical significance, I have no organizing principle to which to attach them and hold them in my head. My mind begins to wander after a few minutes. It’s hard to pay attention, to engage with them and their mysterious logic.

I sometimes resent her delusions for pushing out the story of our past—for supplanting the days in which she stuffed me into a snowsuit and propped me on a sled, and the many times she repeated this ritual over the years. The richness of our life back then. But I would resent her delusions much more fiercely if they weren’t what provides the richness of her life in the present.

“A glacier,” she tells me on a walk, “is an animus that reaches out to the things that belong to it—like ice tunnels.” She points to a long cement traffic tunnel through a gray cliff, saying, “That’s an ice tunnel. It looks like cement, but…” She goes on to explain that this tunnel is actually made not only of ice, but also quartz. I consider this. Then I picture what I know to exist: huge glaciers, ice fields, slowly churning down their chasms, poking tongues into mountain valleys, claiming their space in the world and reshaping what they touch. In a way it seems entirely true that a glacier is an animus. I step into the fog of the delusion, get lost in it for a moment, step out again. And in the space between the sense it makes and the nonsense it is, I think, Yes. Okay.

Professional Conference / Emotional Connections

by Melisande Randall

It has been two months since I attended the Child and Youth Mental Health Matters Conference in Vancouver, Canada.  Are you ready for a mouthful?  The conference actually had three in one titles as it was three conferences in one:

First National Parental Mental Health Conference

First International Young Carers Congress

Third International World Congress on Children of Parents with Mental Illness.

Needless to say, it was the third segment that most caught my attention.  Since 2008, I have been connecting with friends on Facebook, colleagues. sons and daughters, and now people whom I refer to as my brothers and sisters in the cause, who are all trying to deal with the issue of growing up and under a family member with a mental illness.  Through the creation of my own group: Adult Children of Parents with Schizoaffective and Other Mood Disorders on Facebook, it opened the door for me to reach out and find others in mental health groups that all offer a perspective and forum for those of us trying to make sense out of a childhood that was affected my someone, usually a parent, who just was not well.  But beyond telling our stories and offering support, many of us are resilient enough, educated enough and now brave enough to say to ourselves, "Where do we go from here once we have told our stories?"  And that is why I decided to address the title of this blog...professionalism and emotionalism.

Thanks to Maggie here at this forum, and others who I won't mention for the sake of privacy, the Crooked House and other Facebook groups posted and shared this Mental Health Conference event that was held just this past May.  From late last year until the conference began, I had to assess who I am and what I do in my spare time as an adult survivor of toxic parentage.  If I were to attend, what would I say and what could I offer?  Then, I had to prepare myself to meet a group of colleagues from all over the world who only knew each other from photos and words printed on a page as we decided to come together as a group and present how social media can affect policy change and research agendas in the field of childhood affects of parental mental illness.  I had to immediately forget about money, time, fear, and stigma in order to focus on how to make my life experiences count towards something that can bring about real change and not just healing. 

There are three things that came out of this conference which stuck with me the most and although I did not expect to cry, of course I did.  I had in my mind that a professional conference would have to be a place where you put emotions aside and talk about statistics and theories and laws concerning the issues which had to be sterilized in order for us to get to the task at hand and share and disseminate information in an educational and formal and professional manner.  WHAT WAS I THINKING?  First of all, emotions could not be taken from the equation of what took place at this conference.  Secondly, validation can be the most valuable outcome when coming together with friends and strangers who share your pain and understand your history.  And thirdly, we need a global mission.

1. EMOTIONS

Why do we act like emotions are taboo?  Why is it that we have to set aside a time and a place where emotions are appropriate?  Why do I feel less a woman if I cry in front of my students because I am having a bad day in the classroom?  Why can't I cry silently during a professional presentation if a chord or nerve is struck?  Why are we so worried about how uncomfortable our emotions make others feel?

At the opening remarks, there were three research specialists who talked about their family history and what led them to the fields they work in as a result of mental illness in the family.  I cried hearing each one.  Was it because this was that type of conference where there is no way to separate the emotional connection from the topic?  Like cancer research or the research of any disease, people come together at conferences to find out what's new in the field, and then, there is always someone who is affected by the disease, and they feel the emotion.

I am both embarrassed and proud to admit that I cried hearing the stories of older men with grey hair and credentials.  I was touched that each could open up their lives and personal experiences and photo albums and put a face to the subject matter.  It took me months on Facebook before I felt brave enough to post my mother's photograph.  She never would have approved of it prior to the onset of dementia.  But I have to believe that now she is undergoing treatment, that her spirit and consciousness are free and hovering over me and letting me know that it is OK to talk about the pain as long as I talk about the healing and we help make way for social change.  These presenters wanted the audience to know that they had a direct connection to the subject matter.  And they wanted us to know that they were done hiding behind the stigma.  And they wanted us to know that it is time to address the needs of the children and it is a societal and governmental and institutional obligation.  We need emotions to fuel change.

2. VALIDATION

I have talked about my need for validation most of my life in therapy in order to realize that what my sisters, dad and I went through with our mother/wife, was not imagined nor exaggerated.  I remember in middle school, seeing a fellow student's mom come to campus to visit her daughter who helped choreograph our dance core routine.  I remembered that this girl was not a very attractive female.  She was tall, incredibly thin, and her face looked sunk in and I always wondered if she was ill.  But she could dance and her mom came up to school to watch her daughter perform and lead us.  After the performance, it was lunch time and the mother and daughter walked across the field and their arms were around each other's waists.  I remember staring and watching them walk across the PE field because I was mesmerized by the outward show of affection.  And for me, this was just a phenomenon.  I saw people hug their kids on TV, but at age 12, for some reason, I just thought that Hollywood candy-coated everything to look extra special on TV but I honestly did not know, at that age, that mothers and daughters could kiss, hug, touch, or be arm and arm and display love IN PUBLIC.  In my case, it was not demonstrated at home like that either.  Love was shown by what my mom cooked for dinner, and by what bills she paid to keep us afloat, and by her laughter when she appreciated one of our jokes.

But screw all the sweet and fluffy stuff.  My childhood was filled with more slaps, and scoldings, and belt threats, and curse words, not just between me and my mother, but also between her and my alcohol abusing father.  The majority of my young life was spent in a household where my mother's screaming fits came from an unexpected place.  My mother threw things to get her point across.  My mother's dark eyes turned shark-like when her episodes began and we closed our room doors as she ranted and raved about how jealous her daughters were of her and how her husband was more in love with his daughters than he was with her.  And there was guilt and shame and water glasses thrown, and garden hoses turned on me when my bike wheels touched mama's grass as she was watering and gardening.  I could go on and on.

Validation came when I wrote my book, but it came even stronger at the conference when I met my friends on Facebook FACE TO FACE for the first time after sharing tales and articles and letters for 3 - 4 years.  I met friends from Australia, Canada, Italy, my own US of A, and then listened to presenters from the Netherlands and UK and knowing we all had this THING in common was so reassuring.  We all survived a chaotic childhood.  Some of us had some supports and some of us had none.  But meeting my social network friends and colleagues for the first time in person was just heartwarming.  Looking into someone's eyes and knowing you didn't have to say a word about what it was like to have a schizophrenic or bipolar mother because you just look in that person's face and you connect and feel and understand because you let your barriers down. And just to KNOW that WE KNOW what it was like to grow up confused and feel emotional abandonment, to see a mom or dad hauled off to a psychiatric hospital, to heal from a beating, to overcome instability, to hide shame, to overachieve to make up for what was effed up at home, to convince our friends and teachers that everything was just fine when it was far from it...that was validating.

I listened and spoke with my new found friends over lunch, dinner, wine and coffee.  There are so many of us affected by mental illness.  There are so many of us who needed help.  There are so many of us picking up pieces.  There are so many of us with family members still in denial, even if a shared ill parent is deceased.

So, I walked away from the conference with validation and I am still wearing it like a badge.  I recently spit out the truth at my aunt and uncle and sisters who all know that something was wrong with our mother but just act like it is pointless to discuss.  But they may not feel comfortable with the baby sister roaring out about the pain and the secrets and the therapy sessions that took place when not even college friends were told where I was going on campus for an hour a week to keep from losing my own mind.

And validation came at the conference when the academic researchers talked about pets adding something to the healing of the wounded child.  I wrote about that in my book without any research needed.  Validation came when we were told to share our stories because story telling is reality.  And that is why Crooked House is here!  And validation came when I left to fly back home to Los Angeles and realized that I never needed one psychology class to explain why I was the fragmented yet strongly glued together woman I am.  My experience had made me more than an expert in the field.

3. GLOBAL MISSION

A group of colleagues sat in a hotel room the eve of our presentation at the Child and Youth Mental Health Matters Conference.  I believe it was May 7, 2012.  Just like Civil Rights, Women's Suffrage, AIDS Awareness, and all the myriad social issues that have taken time, sacrifice and political shifts to achieve, HERE WE ARE.  A group of people saying that it is time to recognize Mental Illness as a social issue that is long overdue for recognition.

How do we make a topic matter to a world where stigma exists?  How do we make governments recognize the needs of children whose parents are probably not even well enough to seek treatment?  How do we give kids a place of refuge without getting them into trouble with family member who don't understand?  How do we get money to treat the ill and their families and not let them get started and then lost in bureaucratic madness?  How do we make ourselves equal when we are the sons and daughters of the mentally ill?  Why are we talking about this now in 2012 when people have undergone exorcisms for centuries when all they were was sick?  How do we make The Church view mental illness like any other physical illness and not view it as some form of sinful state of being?

I ask better questions than I offer solutions.  I refuse to feel guilty about that because at 45, I just now know that I can come out of my closet.  I can stop kicking myself for dumping all the journals that kept me hanging on as a kid.  I can pat myself on the back for creating a group and writing a book and talking openly in forums about my dysfunctional family and my own self destructive tendencies.  So I won't fret about not having answers yet as to how to get started. 

But I am writing and I am ready to talk and I want to be heard.  I want to do my part however small.  Grassroots start with the strong, the weak, the scared, and the meek.  There are followers and there are leaders.  We need both.  We can't be picky now.  We just need to mobilize.

Thank you for reading.

Melisande Randall

Author:  Under the Invisible Umbrella:  Surviving My Mother's Mental Illness

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Melisandewrites@twitter.com