Not My Sister's Keeper

I Have So Many Stories About My Sister. Here is One.

My stomach tightens into an instant anxiety ball the second I hear the phone ring. It’s the cartoony pogo stick sounding ringtone I have assigned specifically to my sister, so I know this isn’t going to be good.

I say hello in my best neutral voice trying to give myself a chance to gauge the situation before diving into the conversation. Before I’ve even finished the exhale of my hello, she is off and ranting. Her voice is a storm of rage, righteousness and mania. This particular spew is nothing unusual, nothing new.

Her favorite phrases It’s not fair and It’s not my fault are peppered throughout her diatribe. She’s ricocheting between some of her favorite topics: how Dad and I are ruining her life, how her neighbor has no right to cut off contact with her, how she shouldn’t have been taken to jail (twice) for charges she didn’t understand, and how she doesn’t care she doesn’t care she doesn’t care about anything I have to say.

I try to interject. I try to get her to calm down. I try to make myself remain calm even though my gut is twisted up and my heart is hammering. But she doesn’t hear me, doesn’t take a breath, doesn’t stop ranting.

After several attempts to get a word in, I start my usual countdown. I’m about to block you. You are not letting me speak. You are crossing my boundaries by yelling and not letting me speak. I’m about to hang up and block you. Do you hear me? 3,2,1.

I hang up. I block her number. I breathe. I try to get my body to loosen its grip on its clenched up, uncomfortably vibrating state. The phone rings again. This time the regular everybody else ringtone. I know without looking it will say No Caller ID.

My sister is increasingly mentally ill. She is on the autism spectrum. She is a particular cocktail of brain chemistry that cannot be labeled, accurately described, or fixed. But she is not stupid.

When my mom, my dad and I determined that the only way to stop her harassment when she spins out is to block her phone calls, she figured out how to dial anonymously to get around our only defense.

I don’t answer her No Caller ID calls when she is in a state, but that doesn’t stop her from trying. On days when she’s called me a dozen or more times, I’ll block all unknown numbers. But then I miss calls and messages from doctor’s offices, repair people, potential new clients, etc. There’s just no good way to escape the onslaught.

When my mom was alive, she had trouble managing how to just block my sister or my sister plus unknown callers. So she would often turn her phone off completely. Countless times this resulted in a freak out from me when I couldn’t get hold of her.

A frail and tiny woman who lived alone, my mom had previously fallen while watering plants on her patio, broken her femur, and laid there yelling for help because her phone was inside the house. So I had reason to panic when I couldn’t reach her.

After several instances of me driving the 20+ minutes to her house while fully preparing myself to find her dead on the floor only to find her happily watching the Hallmark channel with her phone turned off beside her, I knew something had to change.

You know those burner phones that drug dealers use? The ones that aren’t connected to your regular cell phone service that you pay for monthly? I got my mom one of those. It was her secret phone. Only her best friend, her niece and I knew about it or had the number. That way we could reach her even when her regular phone was off. Of course sometimes she forgot to charge it or didn’t hear it because it was a quiet little thing, but when it worked - and saved me a frantic wellness check - it was great.

So how did we get to the point where we all had to learn how to block contact and keep secret communication methods to avoid the harassment of my sister? Good question.

When my sister was born, she was normal. Normal weight, height, reflexes, responses, etc. Normal-ish development and timelines for walking and talking. But before the age of two, my mom started noticing that she was different than most of the other kids her age. And she was different than how I was at the same stages of development. She didn’t smile much. She was uncoordinated. She didn’t engage with the other toddlers. She didn’t react normally to things. Something wasn’t right, but it wasn’t something really definable.

My dad was a pediatrician, so of course my parents had all the tests done. There was no diagnosis that fit the mix of my sister’s makeup. Her differentness became more apparent as she grew. But her melange of quirks, disabilities, tics and behaviors did not fit into any slot.

She was prone to outbursts and inappropriate actions. She was fully verbal and pretty developmentally on target in terms of reading and language yet couldn’t engage in a consistently normal conversation. She was way behind in other areas of learning and had major difficulty with physical tasks like learning to tie her shoes or brush her own hair. She never learned to ride a bike. She had a wandering eye and a strange habit of constantly tapping her nose with a pencil.

At the time, she did not fit the standard criteria for an autism diagnosis. But she didn’t fit any other diagnoses either. So throughout our childhood, she was labeled with the umbrella term of “learning disabled.” This descriptor, while exceedingly vague and way less weighty than the strange package of her behaviors warranted, was all we had until the 1980s when the term Asperger’s Syndrome entered the lexicon.

The diagnosis made some sense of the mosaic of markers presented in my sister like her good grasp of language and reading skills but poor and awkward communication. She had trouble with eye contact but no problem screaming out loud in a restaurant. (Or hanging from the ballet barre in a dance class performance saying burp, burp, burp). She fixated on very specific things like radio DJs, repeated herself constantly like a record stuck in a loop, ran out of the room screaming if an actual record hit a scratch. She was able to complete all the activities of daily living like getting herself dressed, feeding herself or bathing, but she moved clunkily, had poor hand/eye coordination, and failed miserably at any physical or athletic pursuits.

When Asperger’s first became an actual medical diagnosis, it was considered a high functioning sort of autism. But as Asperger’s went, my sister was on the low functioning end of the scale. Many people diagnosed with the syndrome were highly functioning, sometimes even advanced, members of society. An Asperger’s diagnosis was commonly assigned to engineers and other highly specialized thinkers who also happened to be socially awkward or considered “strange.” This was not my sister.

In addition to her outbursts and odd behaviors, she was incapable of sustaining a normal interaction or relationship. In short, she weirded people out. If I was talking to someone she didn’t know, she would insert herself next to me, interrupt the conversation and ask me (loudly) Who’s this while pointing at the bewildered person I was talking to. Or she would just walk up to a group of people in a convo, insert herself into their circle and start shaking her head and laughing. She made others uncomfortable. But she was never violent or angry. That came later.

Her mental health has steadily deteriorated for the past decade. She’s been in treatment and on medication consistently, but nothing has helped. She has hit my dad multiple times, she pushed and hit my petite mom on several occasions, she punched my stepmother in the face. She threw a chair and tried to kick her therapist, randomly assaulted a repair guy in her condo parking lot, and has threatened repeatedly to kill my dad and/or the police. (I have actually been contacted by a Homeland Security officer due to her calling 911 and threatening to kill police.)

She has stalked and harassed several people who were just trying to be nice to her. As soon as someone befriends her, she becomes obsessed and gloms onto them. So she has no friends.

She’s the loneliest person in the world.

Nothing makes me sadder, more anxious, more frustrated or more defeated than my sister. She is the only sibling I have. I am a witness to her suffering, but I cannot fix it.

Now that my mom is dead, it is just me and my 84-year-old dad trying to manage her. But we have no power to do anything. Because she used to function independently (with a lot of help), we have no rights to make any decisions for her. This is the law where we live. We can make suggestions to her, offer her all kinds of assistance we think would be helpful to her, but we cannot force her to do anything. And she is adamantly against any suggestions we have to help her have a better life.

We have consulted attorneys, mental health organizations, psychiatric professionals, social services and social workers, We have filed mental health warrants, investigated conservatorships, guardianships and other means to try to manage her life and have been thwarted at every turn. We’ve been told she’s marginally too functional for us to make any decisions for her without her permission.

Many people who have been pulled into her orbit have tried to offer us advice or resources. They mean well, but they have no idea just how deep the gaping hole of lack is for our situation. I politely thank them for their input but silently scream at their implied belief that we haven’t tried, cared or done enough. Until you walk in our shoes, I want to have tattooed on my forehead.

My sister has been repeatedly picked up by the police and involuntarily admitted to the psychiatric unit of our community hospital. Each time we are hopeful that maybe this will be the time that something can actually be done. But each time she is drugged like a zombie so that she is no longer a threat to herself or others (the measuring stick for holding her involuntarily) then released back home. She has even been involuntarily committed at private psych hospitals on more than one occasion, but they keep her until her insurance-sanctioned time runs out then send her on her way.

At the moment, she is in jail. She was out on bail for harassment and abuse of emergency services charges but did not fulfill the court-appointed task of seeing a specific psychiatrist for an evaluation. So at her follow-up hearing, they took her into custody. The charges are misdemeanors, but she is being held in the maximum security section of the jail because according to her attorney, she does not play well with others.

This is the longest she has been held anywhere. She’s had two competency evaluations and has been deemed incompetent both times. We are desperately hoping this will be the time something changes. That she’ll be committed somewhere safe.

It does not feel good to wish your sister was in an institution. It does not feel good to be relieved that I don’t have to worry about raging, ranting phone calls or whack-a-mole crises for the time being. It does not feel good to regret the sister I was to her growing up. It does not feel good to feel guilty that I got the brain I was born with and she got the one she did. It does not feel good to wish I had a different sister. Or no sister.

I love my sister. I hate the suffering she endures. I wish I could be my sister’s keeper, but I cannot. So I try to keep her safe, I try to keep her in my heart, I try to keep hope for her future. And in the meantime, I try not to feel done in by the prayer I have for someone else to keep her.

If you or someone you love is struggling with mental health, please reach out to mental health professionals in your area. Or call the National Mental Health Hotline at 1-866-903-3787.

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