Raise or Raze?

Marking Death

Our Journey Losing a Sister and Mother to Mental Illness

Today marks the one year anniversary of when my big sis passed away. I wrote this remembrance exactly one year from the date that I lost her. It’s today for me- I’m in Scotland right now traveling. It’s the home of our grandmother and her family. It’s the line of ancestry that we can trace back through time. And for kids who have had their family line destroyed for many many reasons, it matters to find some sort of grounding in this crazy world.  And so it’s time that I’m thinking about right now. Because I long for connection. For identity. Yet for the rest of our family, it’s still yesterday-the day before we remember her passing. What is a date anyway? Why does it matter so much that I am marking it? Thinking about it? So sad about it? It’s only a cycle on a calendar or the hands ticking away on a clock. Why do they matter so much to me right now. To us. Will they wake up tomorrow with their breath catching in their throats like I am today?             It’s all loss. It’s all eternal.

One year ago our world fell apart.

She took her last breath. One year ago, our sister, mother, and grandmother passed away. Passed. That verb makes me want to scream. Or probably more like vomit. You’re with the person and then they are no longer with you. You see their body but you cannot interact any longer. Our culture prefers kinder ways to share about death and that’s fine. We’ve lost so many in our family that it’s getting ridiculous to adhere to the “acceptable” calmer ways of discussing loss. Our family members gone: mom. dad. big brother. now big sister. It’s becoming a bit of a panic: who might be next? I’m now the oldest so I worry about this stuff.

Her death wasn’t a gentle event and so when I think of using the verb “pass” something makes me angry. I don’t know if it’s the washing over of something awful like you’re supposed to only use what helps others around you gloss over the death or the fact that I’m stuck on a verb and then all I can think about is the three plus decades of teaching English. What’s wrong with me? (“Squirrel!”)

On top of everything, I feel like I’m being watched and judged for how I speak about her death. I feel a bitter divide in how I want to talk about it and how I have to talk about it. I have to be the smart one. The only educated one. The one who got away. The one everyone goes to for advice and strength. I have to hold my head up and put my glasses on and put on a show.

She died. No beating around the bush and avoiding what really happened. It’s painful. It’s anguish. So doggone it. She freaking died.

There’s been so much death. Like our mother, she died of lung cancer. Both of them smoked their entire lives. Our dad’s lungs were so trashed from a lifetime of smoking (emphysema) that they didn’t survive an open heart surgery. This older sister of mine threatened to sue me if I followed his wishes and initiated my rights as the executor of his estate and healthcare directives and just unplug him from the machines. It was my call and I let her bully me into keeping him alive on machines. OK so I’m off topic here. But only a little.

Why would I let her do that? To avoid a probable avalanche.

To be honest, we lost her and our family fell apart way before her final breath. She suffered from a schizoaffective disorder. She was bipolar paranoid schizophrenic and then some. So while she may have died from the lung cancer, she left us way before that.

Our sister began acting differently as a teen. She began abusing serious drugs. She dropped acid quite young. She stopped. She began. We know now she was self medicating but we didn’t know then. She got pregnant at 16 and stopped again. Dad shipped her back to us from New York to California because he couldn’t handle her. She became a mother 5 weeks after she turned 17. I was soon to be 16 (we were 15 months apart). Becoming a mom was difficult for her and she couldn’t handle the stress. She ached for a life of fun and games just like she always did. Dad allowed her free reign. After she had her baby, mom couldn’t handle the crying or stress so she made her and I move to an apartment nearby with the baby. That’s how I finished high school: raising her baby for her when I wasn’t in school (don’t get me started talking about our mom).

We don’t know if it was the drug abuse early in life. Oh we wish it were so simple – blame it on drugs. Let’s wrap up the mystery with this convenient tale that is acceptable to talk about. It’s the story we told everyone for years and years. It was the drugs. Because talking about mental illness is so much harder. And people treat you differently when you do.

So maybe she was born whatever was ailing her. And none of us knew or understood what was going on. She fell through the cracks. Talking about or thinking about her mental illness this way makes me nervous. Why her? Why not me? Maybe it will happen to me if it happened to her. Maybe one of my kids will develop what she has. This way of understanding mental illness burdens us. It grabs and twists our souls and pulls us into a deep pain that screams from an abyss. No amount of fake smiles or pats on the back or nods of understanding can pull your thoughts away from the dark water’s edge. Fall into it. Just let go and fall. Fall.

She was paranoid. That’s putting it mildly. She had delusions. Hallucinations. And her mood swings hurt like hell. She worshipped some pretty weird things. She wore some pretty weird shit too. She could not function in the same world that the rest of us lived in.

By this time, she had two daughters -her second born when she was just 20. She could not handle parenting or being a good wife. She checked in and out of reality. She adhered to strange ideas requiring her to plaster every window in a house with dark paper so no light would enter. She didn’t allow her kids to be kids. The stories we all have. Especially those girls.

How weird did stuff get? When the girls were very young, our elder brother popped by for a visit with her midmorning and found the baby sticking a screwdriver into an open electrical wall socket. He scanned the room and saw that all of the covers for all of the sockets were off and copper wiring was hanging out. He heard sizzling and darted into the kitchen where he found the three-year-old making breakfast standing on a chair to scramble eggs. Alone. Unsupervised. Knew how to turn on the burner, scramble the eggs, and get herself a frying pan and spatula. He was furious. His niece was proud of how she was taking care of her family. But the danger they were in.

When he tried to talk to her, she did more than ignore him. We got the usual governmental services involved because the girls were most definitely in danger and our sister most definitely was not parenting them. The wires hanging out were only one of the dangers those girls were in. All they do is knock on the door, ask the parents some questions, and if they respond with the “appropriate” responses, they leave. I understand that they don’t like to break up families, but if they had just dug a little deeper-had returned a few times to check in-they would have seen what was going on.

Because there was inadequate advocacy for help in this situation, we felt that WE failed in every way because we had no idea yet what was going on and she was never evaluated for a mental health disease. With the “follow what you’re supposed to do and call this agency” failure, our sister accused all of us in her family, who loved her and wanted to help her, of trying to destroy her life. Her paranoia began to take over her thinking. She hid from us for seven years. She dragged her kids and spouses through hell and back. She ruined marriages. She left us to worry and in fear in this world before the internet and cell phones. What would make her run and hide? What made her do things that most people would call “out of the ordinary”? 

If you knew me during high school or college, you may have seen someone who may have looked the part. But I didn’t feel the part. I lived in fear and I masked in every way I knew: drink. drugs. try like hell to fit in, have sex, and laugh and be the life of the party. I didn’t know how to talk to anyone about anything beyond what was cool.

Throughout college, I tried to hold myself together while my family fell to pieces. I did well but then I began struggling academically and refused to even learn how to get help.I hid deep inside myself and felt like I didn’t belong because I came from a messed up below-the-poverty-line family who lived in a trailer with a drug addict teenaged mom as a sister who had absolutely nobody rooting for her. I worked part-time and got student loans out so that I could support myself and those girls in whatever way I could. I felt that I was destined for a loser life and would probably end up living in a tin can too so why bother. Bottom line: I fought my own demons and I lost terribly. I was falling apart but I didn’t even know it then. I’m off topic again (“squirrel!”).

Throughout all of it, our sister took her wrecking ball to each and every one of us. And not just once. Sometimes it was interaction to interaction. But she left her mark. And boy did it hurt. If she didn’t have one daughter by the literal neck wreaking havoc then it was the other. And then a sister. Then the other. She abandoned her daughters and it’s no wonder they dropped out of school.

Friends can walk away to protect themselves from her abusive chaos. They could leave. We could not.

As the girls got older, they tried very hard to help her. We know that unless someone is willing to accept another’s help, they won’t accept it, and she was too far gone to accept any help. She wouldn’t stay in the care of social services or the healthcare system. She even accused them over the years of abusing her. Nobody was safe. More recently, she began money laundering for foreign mafia group – I am not exaggerating!! She said hello to a rock star on a social media group and they saw a sucker and took advantage of her and nothing we could do would convince her what was real.

If you have someone with mental health issues in your life, then you may know what I’m talking about. No decision is easy. Our sister would just refuse treatment or refuse care in every form or even speak to a professional and she could just walk away and do whatever she wanted. Because she was an “adult.” This went on for decades. Her falling apart. Refusing her medications. Abusing her family members. Upheaval. And the cycle would begin all over again. We tried to care for her ourselves and we begged her to go into care but she would not do it.

Through the struggles and suffering to support her, we all made agreements with each other to back off and make her use the services instead of using us as her punching bags. Did it work? You probably know the answer.

Watching your older sister, mother, close friend or relative destroy themselves and every relationship around them is indescribable. The shock you feel is so painful. The words are impossible to locate. You cannot cry enough tears or scream enough to drown out the sound of their suffering. You cannot begin to explain what you’re going through to anyone. You feel completely ashamed that you’re such a failure to be unable to help someone. I mean how hard can it be? Just make it happen. Drag her in for heaven’s sakes! And for another, you know for a fact that no matter who you try to talk to, they could never begin to comprehend or offer empathy because you don’t even understand it yourself. Did that just really happen? Did you just get slapped by your sister or your own mother for trying to help her? Did she really steal your diamond earrings that your husband gave you when you got married? Did she just steal money from your wallet to go and buy drugs? Did she just make a pass at your husband? Or lie to you to get what she wants? Or manipulate you? Or say some of the most hurtful things to you when all you want is love from her? Or Understanding? Or just peace.

It would be grand if we could call it a wrap and simply say it is over. But the fallout. The upheaval, and trauma. She may be gone physically but for forty-five years, we tried to support her and during all of that time, we hid the struggle, pain, and emotional abuse we endured. When did she leave us? We were ashamed and we were overwhelmed and believe me, nobody can understand unless they’ve been there and most people have not been there. How do you let go of all of that? It’s like your body and mind are on autopilot for chaos control. You lurk in the shadows waiting for the attack. You become so accustomed to the flare-ups, and I think this may be part of why it is so hard to say goodbye. It’s why I sit here trying to process what I’m feeling.

It can be overwhelming when so many feelings and emotions grab you from every direction. From 40-year-old memories to the ones that happened just a couple of months ago. Decades of sadness and attempts to help her. To help our own children and loved ones cope with her disease. It’s not just grief and sadness I feel but relief. I then begin to feel guilty and I look around and wonder: how do I share that? Thankfully the world is not the same as it was back in the 1970s and ‘80s. Back then nobody talked about it. Ever. It was like the Fight Club rule.

By writing about this, I am hoping to address the stigma associated with mental illness and living with someone who has it. We have each other to talk to about our lives but beyond that, we feel nobody understands or believes us. Our sister and mother, aunt and friend refused our help. We tried endlessly to get her and her advocates to listen and change her care. We suffered through years of this cycle and now we feel ashamed and guilty for not doing more. We always have but it somehow feels worse now that she’s gone. But don’t go through this alone. There are so many wonderful resources but if your family member refuses them, what then? Our family truly believes that there needs to be better advocacy for adults who suffer from mental illness. There needs to be a better way to keep adults who legally have a right to make decisions for themselves in care. It’s such a slippery slope but the slope needs some way to make something stick.  The balance for such care is crucial for not only the patient but for their loved ones.