Even though I turn 30 next month, my sister turned 40 years old a month ago. My mother bought a Chinese cake at Ranch 99, you know, those Chinese cakes that aren’t as sweet as American cakes, with the canned peaches and grapes and mandarin orange slices layered in a totally unsweetened yellow cake base. No singing, nothing particularly joyful, just a cake to acknowledge a milestone in her life while Taiwanese news plays in the background. Afterwards, she went back into her room and closed the door behind her.
Her cocktail of drugs has kept my sister’s psychotic episodes in check, but it has had its consequences. She has gained rapid weight; more weight than me. When she’s doing “well,” her eyes glaze over – she’ll make simple statements and I do my best to answer in clear, concise statements and to talk about light subjects. Stuff that was taught to me one weekend when I sat in a Border’s, skimming through books of families of people living with schizophrenia. Sometimes she’ll burst into laughter, and when asked whats so funny, she’ll quickly reply, “nothing.” “Always laughing,” my mom would say. “And nothing to laugh about.”
Those are the good days. There have been bad days. I’ve written about those. I haven’t seen them in a while, but once every couple of months or so, my mother will make a frantic phone call late at night: “Wo bu sufu. Ta you shenbing le.” Literally: I don’t feel good. She’s sick again. How I interpret it: I don’t know how much I can take of this.
If there was any hope for her having a full recovery, it’s been gone for years. Any hope that my parents had for her to find a job, become an integral part of society through medication, all that has gone away; they – maybe it’s we, I’m not sure – want to keep her medicated. Being medicated is better than having her hurt herself, or people she doesn’t know. So she does what she knows – she takes public transportation early in the morning to a large metropolitan city like Berkeley or San Francisco, where I presume she walks around. “Preaching to the homeless non-verbally,” to paraphrase her, more or less.
Years ago, my parents would argue with her or lecture her or console her with suggestions, suggestions that have ranged from counseling to programs to experimental drugs to sending her to China to find her a doctor husband. Now, my parents are exhausted. My father has moved out. My mother is left to deal with the situation, bitter and angry.
That’s what saddens me the most about this whole situation.
And as for me: I will be her legal guardian in ten to twenty years, approximately around the same time I start deciding on separate living arrangements for my mother and father. I’m scared – fucking terrified – and I don’t know how I’m going to handle this alone, but I have approximately ten to twenty years to figure this out, and I won’t have time to be exhausted once the time comes.
My sister had her birthday last month, and I will have my birthday next month. Both monumental, for different reasons entirely.
thats some heavy stuff. hopefully with stem cell research, we would have a cure by then
Dude, I’m really sorry to hear about all that. Dealing with a mentally ill sibling is a tough situation. I know because my brother is the same way and when my parents can no longer take care of him, I become his legal gaurdian as well.
If you ever need to talk to somebody about it or need support, let me know.
It must be hard to write about this sort of thing. For what it’s worth you and your family seem to show a lot of courage in the way that you relate to your sisters illness. Here’s wishing you and yours all the best for the future.
It’s so hard – I’m sorry you and your family has to go through all of this. I’ve got a neice and a nephew whose father is schizophrenic; they’re 6 and 7 right now, and watching them grow up is like wondering if/when the guillotine blade is going to drop.
Hang in there…it’s good to see you blogging again (I’m a longtime lurker).
your strength is so admirable.
love and warmth from new york city.
Ever think of introducing your sister to art? At this juncture, I’m sure your family has tried everything… then again, with a traditional Chinese family in mind, having an artist as a son or a daughter is mildly preferable to owning an insane chimp, flinging his feces at the random passerby in hopes of landing a random piece of fruit. Art (something like painting and sculpting– not the other activities I’ve been involved with recently like, say, firing and spraying bronze with potentially lethal chemicals in order to achieve some wicked patinas) could be a productive outlet to her emotional state, if not for money, then in a possibly better way to understand what she might be going through for others. The other nice thing about it is that it tends to have no idealistic, religious or secular boundaries– creations of a religious artist could still be appreciated by one with more secular convictions…
I don’t know, man. It’s heavy stuff either way. If you’d like to try, though, I have a bunch of acrylic paints I can give you for her to try out.
Just wanted to add my endorsement to the art idea. Susan Weinreich is an artist in NYC that has been living with schizophrenia for the last 25 years. She is an artist and has used that as a way of expression and recovery. The idea actually came from her therapist. I’m not saying that it will work for everyone, but it may be something to look into. Her website is: http://www.susanweinreich.com/
I’m sure you get a lot of folks who nod and send their sympathies. I applaude your strength and thank you for sharing this with us.
Hey Ernie,
I don’t usually comment, but I have some experience in this, so I thought I’d pipe in.
I work with people with disabilities, and the thing that seems to work the best is to form a network of support around you sister. Before that time comes, make a plan (with or without your parents, but ideally with your sister). Ask friends, other families, the guy who drives your sister’s bus, anyone who knows her, and who cares for her, and share the responsibility with them. It shouldn’t be all on your shoulders. It takes some time but it makes you life a bit easier.
I have a sister who, while not psychotic, is unstable. and causes me to worry constant (about her and her kids). I have a mom who relies on me for everything and was just diagnosed with Parkinson’s.
When I read your entry today, it brought tears to my eyes. I could never t understand completely what you’re going through but my heart aches for you and I hope for your continued strength.
I feel compelled to offer support, but I’m at a loss for words. You and your family are in my thoughts.
i’m so sorry to hear about all of this ern.
if you ever need me, email/call/send a pigeon.
*hugs*
i also turn 30 next month and am trying to brush the monumentalness of it under the doormat. i thought my family’s greatest burden was behind us as my mother’s mentally-ill brother died last year and her other mentally-ill brother has had things under control for awhile by living a strict, regimented, medicated life that we don’t worry about him anymore. a recent visit with the grandparents has brought on the guilt of not personally taking care of them in their last years and anger towards all their children who grew up and moved to the other coast (to be away from the burden?).
Ernie, I’ve been reading your site for about five years now, and I just want to say it’s nice to have you back on my internets. You talk about having grown up, and clearly you have, as have I – but you’ve always been this insightful and affecting and I just want to thank you for your perspective and your amazing candidness and honesty. It’s always striking to me when you write about your sister – this sounds fucking cheesy, but you put a very real human face on an issue people pretend to know and think a lot about. Your sister is a person, and she’s a person to you – but you make no bones about how hard it all is, and you don’t try to act like you’re a saint for dealing with and writing about it, and you don’t pretend it’s not happening to YOU as much as it is to HER. I guess that’s the attitude I’m thanking you for.
You courage is heroic.
My mom was ill for more than 25 years. She couldn’t go out of the house and had to be carried around most of the time because she can’ t use the wheelchair properly. My dad, my sister and I had gone from denial to acceptance to empathetic trying to make her life as comfortable as possible. She was sad, saying that sometimes, she felt like a burden to all of us. But she was our mom. Our mom. She passed away last year and even though many of our relatives and friends gave us their condolences, the unspoken sentence was – now, you can get on with your lives. I find that laughable. No matter what, she was my mom. I need her, even if we have to take care of her. Though there were times when she was alive when I feel frustrated and angry at our situation, it’s worse now that she’s gone. I miss her so much every day and would give anything to have her back in our lives again. She’s my mom.
My thoughts are with you Ernie. I know how hard it is to live with a member of the family who is sick. You have to look for that silver lining each day. And just live, one day at a time and not think too much of the future. God bless you and your family always.
It sucks getting older, yeah? You’re in my thoughts and wish you the best.
Glad to see the site up-and-running, and glad to hear you sharing even those most difficult situations. Hopefully, for your sake it serves to work through feelings and thoughts.
Really tough.. but I’m glad you have the courage to write about it.. maybe having an outlet will help you somewhat.
In case your family hasn’t tried it, I’d third the art idea. My mom lives in a small Italian village that until a few years ago had a resident schizophrenic. He was in his 50’s when he died, he would sometimes go off medication and act erratically, but I was always very impressed at how the villagers treated him with compassion and empathy, rather than, say, annoyance (and having him institutionalized or whatnot). Anyway, this guy was a phenomenal painter.. he’s very well known and fairly famous around this particular area for his artwork. His paintings are still highly in demand and when he was alive, he even designed the logo for my step-father’s business t-shirts.
I don’t know if your sister is at all attracted to art, but it strikes me as a fairly constructive way to funnel her energies, as well as a way to express the things she sees, hears, feels, etc.
I know it’s difficult to face what’s looming on your horizon, but my thoughts and best wishes are with you.
It’s difficult living with this but I can tell you still have courage in your to face it. That is so admirable.
I gues in the next 20 years you better get some thinking done. Btw, ever think of introducing her to art? It make keep her more stable. Best wishes.
Gosh, this is sad. I’m dealing with my mom getting older. I’m dealing with me getting older. Life is hard, but it’s what we have. Hope you have a good support network for yourself. Take care.
what courage ernie, i don’t have the balls to use the internet to share on the wounding folly of those close and it’s effects on me. a sort of open secret that those about me share but everyone believes ‘you just have to live with’
I’m in the same situation with my Mom and Brother. My mom being stuck alone, my brother being metally handicapped (and from the sounds of it, taking the same type of drugs). What helped my brother a lot is going to community theatre group setup specifically for people with special needs. They put on several productions a year, and it helps my brother out a lot. I’m not sure if you have something like that where you live (i’m in Vancouver), but I’d definitely recommend it a lot.
hey ernie, i dont know anything about your sister’s mental health history or your family’s coping strategies, but have you guys looked into community mental health teams? they deal with people and families with chronic mental health issues in terms of support and referrals- support during crises and referrals for counselling, support groups, social groups- anything so that the burden is not all on the family. it sounds like she’s functional while on meds so it might be worthwhile to look into? all the best xx
Your courage and opennes is very moving.
I have nothing but the best to wish for you in your time of struggle.
Hang in there, Ernie. I’ve been there, so I can relate. It’s not an easy thing to live through, and you’re going to worry (and going to be terrified -whether it’s justified or not) because you don’t know when the ball is going to drop or if it’s going to drop in the near future. And it can wreck a lot of havoc in a short period of time.
Keep the faith and my thoughts are with you.
I just had this conversation myself with both my family andsome friends. I face something similar myself. It’s like this weight pushing on the back of my brain. I know it’s coming, and like you I hope I have the energy to get through it when it hits 10-20 years from now.
[...] My sister has phases; she has her depressive phase, her psychotic destructive phase, her manic phase. When she’s in her manic phase, it’s like a game of word association: idea A leads to thought pattern B, which naturally goes to ideas C and D. She naturally brings up idea D, and I try to rationalize to myself that ideas B and C exists; it convinces me that there is a method to her madness instead of her “just being crazy.” [...]
I am currently at that juncture that you fear and I always have. My ill brother has lived with my Mom and now my Mom is 77 and unable to remain in her home. My back is so tight and my face has broken out like I’m 13 again but I haven’t dropped dead of anxiety YET. My biggest fear is that my brother goes off his meds or really acts out when he finds out he has to go into a group home situation. I just wanted to let you know that looking back, I can see that I spent a lot of energy worrying about the situation . While it’s not something I would choose for myself, I am getting through it. We all have a strength inside that surprises us. My plan for tomorrow is to start slowly cleaning out my Moms house without my brother figuring it all out too soon. Wish me luck. Life is a roller coaster. Enjoy the ride.
[...] To me, it just brings up the issue of Asian immigrants, Asian Americans and the stigma of mental illness. Of course, most people who are mentally ill do not commit violent acts, but it’s a subject that hits close to home because I have a sister that has been diagnosed with bipolar schizophrenia. While I’m not going to speak on behalf on all Asian-Americans (Christ, when have I ever?) I can tell you that the idea of mental illness is something difficult for my family to accept, even to this day; the “public face” is a big deal in Chinese culture, and the concept of psychologists and psychiatrists are relatively unfamiliar at best, and “weird” and “foreign” at worst. Only when the situation is dire (In my case, its when my sister ran away from home at 23 to meet someone she met in her mind) does the situation get the attention it deserves; by then, it might be too little, too late. [...]