I left our betta fish for dead

google-before-after

“Can you go feed Google?” I asked my six-year-old daughter, Maddie, this morning.

Google is our betta fish.
“Okay!” she said brightly.
When she returned, she gave me a report.
“I gave four pellets. That’s the right amount. Google ate them all.”
I smiled at her. “That’s great! Google seems to be really hanging in there, huh?”
“Yep! I think he’s going to be okay,” she agreed cheerfully.
Then a pause, and she asked me something unexpected.
“Mommy? How is your mom doing?” (Sometimes she says grandma. Sometimes she says “your mom.”)
“She’s doing great!” I told her.
Because she is. This week has been wonderful.
“Oh! That’s good! I think maybe she’s like Google!”
Maddie whisked away to get her book bag and things ready for school.
I just stood there with a lump in my throat at this thought my first-grade daughter had just dropped on me like a bomb.
A few months ago, we got two betta fish. One for each of my daughters.
They each had their own bowl. I did my best to condition the water and acclimate them.
Even still, I warned my girls repeatedly at the fragility of these kinds of fish. It was a stressful 24 hours for all of us, wondering if tragedy was going to strike.
I even told them not to name the fish yet.
“Listen,” I said. “I know you are very happy about these fish, but we have to wait and see at least a couple days to be certain they will make it.”
They nodded solemnly and took my dose of pragmatism like a bitter pill.
Sure enough, a day later, one of the fish died. It was the one Zoey had selected.
Zoey is a deep and sensitive 10-year-old, but she handled it okay.
Maddie’s fish soldiered on. In another day, she named it “Google.”
We had an empty 5-gallon aquarium, so I decided we’d move Google from the small bowl to a luxury aquatic apartment.
I bought real plants, new ornaments, a new filter, and gravel. I prepped it perfectly and moved Google in. I even made a modification to the pump to slow the water current so Google could swim more easily.
Google, in the lovely zen garden aquarium, looked magnificent and happy with the sun shining through the tank in the window.
Yes – the tank was in the window.
After a few days the algae began to bloom. And bloom. And bloom. Sheets of it covered everything in record speed.
In retrospect, it seems obvious why this happened, but I didn’t figure it out right away.
So I cleaned the tank carefully and left it in the same spot.
The algae began again in only a few days.
I was frustrated and busy so I let it stay gross for about a week before tackling the cleaning again.
I didn’t notice Google was beginning to fall apart, literally.
Once I decided to try again to clean it, I looked at Google and was shocked at the condition of his fins. All the flowing iridescent waves of red and blue were missing – jagged fin bones actually poked out.
I gasped. “Oh no. What have I done?” I thought. I felt guilty for leaving the algae build up so long.
“What the HELL is going on with this tank? Why is this fish sick now? Why can’t this just be EASY?!” I whined at myself.
So I googled how to save Google.
I found things about why algae grows and realized the sunlight from the window was working against me.
I learned about something called “fin rot,” that can occur in dirty tanks.
And I gave my girls another speech.
“Listen,” I began. “Google is not doing very well. I know we love him, but he’s really super messed up and I honestly do not think he’s going to make it.”
Tears flowed from both of them as they nodded acceptance.
I’m not proud of this – but I didn’t take care of it right away. I gave up on Google.
I really did.
Here are some of the reasons I validated to myself for leaving him to die.
“He’s super messed up. There is likely NO WAY he’s going to come back from this.”
“He’s just a fish. Why am I spending so much time on this?”
“Nobody else would care this much about a stupid fish. Why should I?”
“This is getting expensive for a fish that cost a few bucks. This is ridiculous.”
I waited for him to die.
Days passed.
I dutifully fed him his pellets.
I tried hard to ignore my guilt.
“Is he suffering?” I wondered.
“Does it hurt?” I worried.
More days passed.
Google continued to hang in there.
“Is he fighting death?”
“Does he know what’s coming?” I wondered.
“Does he have a will to live?”
I didn’t really want to look at him. It made me feel awful.
I wanted to AVOID THE FISHTANK because of this moral quandary.
Finally, after more days and days of Google clinging to the brink of death, I was so moved by his tenacity that I finally felt obligated to partner with him in his quest to stay alive.
Yes. I needed to be moved by his own fight to stay breathing before I finally stepped in.
I went to Petsmart and got medicine, chemicals for the water, a scraper for the algae and a cling to cover the back of the tank to block the sunshine from coming in.
I groaned when the cashier rung it up. $32 worth of stuff for a stupid $5 fish.
I put the cling on the tank, scraped the algae and cleaned the water out. I waited.
It worked.
The blooming algae stopped, and Google has gone from zombie fish to “improving” status.
He’s nowhere near what he used to look like.
But he’s as feisty and active as he was in his healthy days.
More questions.
“Does he feel better?”
“Is he actually happier?”
“Does he know I saved him?”
“Does he know I could have let him die?”
And so you have the story of our ragged betta fish, Google.
Google is a messed up, mangled little fighting fish, whose life is literally meaningless to the entire world except our family.
If he were to die now, I definitely would cry.
The value of a life – whether it is a fish or a human – is often put on a sliding scale, isn’t it?
Who is worthy of saving and who is not?
Who is deserving of our time and efforts and who is not?
What happens when conditions in life out of our control make a mess of us? Will there be others to recognize it and step in?
What if fixing a problem is complicated and expensive?
What if we try our best to help and it still doesn’t work?
Does that mean we shouldn’t try?
Does a person (or fish) have to PROVE they are worthy of living before we help?
bz5a0098-dip
My mom is ragged, like Google.
She’s been shredded up, mentally and physically, by so many circumstances that are not in her control.
She won’t ever go back to “normal,” and neither will Google.
She began life privileged, with a beautiful home, a caring family and all the tools she needed to be successful.
Somewhere along the way, schizophrenia happened.
There have been times when I thought she was done with this hard life.
I lost a grip on hope and waited for the end.
My brother and I were all but certain she would probably die after a very dangerous and months-long recovery from colorectal surgery years ago.
But she soldiered on and surprised us. She came back with a permanent colostomy bag and a joke to tell.
We’ve seen the frustrated looks from social workers and doctors over the years and comments like “Well, we aren’t really sure…”
So many psychotic breaks.
So many involuntary trips to the psychiatric hospital.
But yet, she soldiers on.
She fights. She swims.
And we try our best to keep her afloat.
She’s worth it.
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A phone interview with my mom

If you had caught a glimpse of my mother on December 6,  you might have seen her naked, outside her home, holding a knife and clearly very, very unwell. Someone did see her – presumably one of her kind neighbors, and called the police. They came, and she was taken into custody, in handcuffs, and admitted into the psychiatric hospital where she stayed for the next 48 days over the Christmas and New Year holidays. I wanted to highlight this bizarre scene, not because it’s sensational (it is), or because it’s funny (it’s not), or because we need more depictions of this kind of “crazy” version of mental illness. (we don’t.)

I wanted to paint that picture in your mind first, so you can contrast it against my mom’s very lucid, reasonable and pleasant conversation with me, here. Sometimes it is impossible for us to imagine that someone like her – in the worst moments of a psychotic break – could ever be so normal, or ever was normal, sane, clear.. whatever you want to call it. And the flip side to that contrast, is that even hearing the clarity in her voice and enjoying this wonderful conversation we had, there will almost certainly be, dark days ahead. The threadbare unpredictability wedged between sanity and psychosis is the world she lives in, and the life my brother and I continue to struggle figure out.

Here’s our conversation. (I transcribed it because at times she is a bit difficult to understand and the audio quality is not wonderful.)

Transcription of a telephone conversation between my mother and I, Feb. 6, 2017.

me: Okay mom, you’re on speaker.

her: Okay I want to say this is an honor on behalf of the mentally ill.
According to my daughter we are not that bad of people. we are beautiful in our own way. I think we are very interesting. Not boring at all because we can’t think straight half the time. (laughter)
me: I wanted to – can we go back?
her: Yes, Emily.
me:  I just wanted to um, let people know, because the last time I sent any updates, you were still in the hospital and you weren’t doing very well and so I think a lot of people would be happy to know you are home and that you are feeling well. And so, you want to talk about that? How you are doing?
her: yes, I’m home. I’m not in ideal conditions because I’m isolated from people and I know the hospital is gonna miss me and I’m gonna miss them. They had a great staff, the hospital. High morale. The worst thing about it was coming off the nicotine. I smoke 2-3 packs a day and I got down to 10 cigarettes a day and that was really hard to do.
me: It was hard to come off the nicotine, you said?
her: Yes, weaning off the nicotine was very difficult and they had to physically bring me in from smoking a few times to begin with. And that was very difficult for me.
but they kept us busy with group activities and eating and I know I’m skinny. I only gained one pound. I ate three square meals a day plus Ensure at dinner. I must have a high metabolism. Off the charts.
me: Yeah, I think you do.

her: I’m blessed that I don’t have to worry about what I eat. I think I’m lucky.

me: Are you glad you went to the hospital? Do you feel like you needed to go?
her: I’m glad that I went to the hospital. I was taken in handcuffs and fought the policewoman. But they did what was right. I was dancing outside naked with a knife. Which is kinda crazy if you ask me.
me: Yeah.
her: I thought my ex husband was threatening me in the attic.
me: You thought what, mom?
her: I thought my ex husband, Dave, was threatening me in the attic, which is really crazy. Really, really crazy. And somebody called the police on me.
me: Yeah.
her: I really needed to go in the hospital. Christmas was such a hard time for me. It is every year.
me: Yeah.
her: A lot of people get very very ill at Christmas. There were way more people at Christmas and then it cleared out after Christmas. I was there the longest. Forty-eight days. Some people were sent home too soon and others were kept too long.
me: So you said, some people were sent home too soon and some were kept too long?
her: Yes. yes. I worked hard to go home. I enjoyed the staff very much. Gabby and Cheryl and Troy and big blue and M&M. I called Troy “Mr. T.” He went about his job without flirting and he would work out with weights. And he was a very quiet, solemn man.
I was told I could really dance at 64. And my son told me when I got home I cleaned the house very nicely.
me: Good.
her: And I am back to being isolated. I would love to hear from anybody who cares to write me a letter. And I really enjoy my daughter and my son. They are great. It’s an honor to be their mother.
me: We love you too, mom.
her: And I mean that. It’s an honor to be their mother.
me: Do you want to talk about.. I don’t want you to feel stressed out, but, I know you had mentioned some things you didn’t like about the hospital that you didn’t like so much and that you wished were different.
her: I wished I didn’t smoke so much.
me: You wished you didn’t smoke so much?
her: Coming off nicotine is so hard for me that I was physically brought back in the hospital from the smoking courtyard 2 or 3 times. And also it was a little too cold. It’s a hospital in winter and luckily I didn’t catch pneumonia. They put me on cough drops and I had a problem coughing because of the smoking but, I read an article in Scientific American that smoking helps the brain of schizophrenics.
I did have a terrible voice in my head. And a good voice that I made up that I control. But now, I don’t have any voices. I’m on depakote, a new medicine, that’s helping me quite a bit. Also, I had nightmares before I went in. And the nightmares are gone. So it was a blessing. It was a blessing to go to Laurel Ridge.
me: Good, I’m glad that you feel that way. Sometimes when I spoke with you, you weren’t well enough to have a good conversation. And you seemed really upset and agitated and not very lucid, and I used to feel sad and worry about you and wonder if you were going to be okay. But I’m glad you are…
her: I’m so sorry. We are all are sorry. The mentally ill are sorry.
me: Well don’t be sorry! Don’t be sorry. I know it was not your fault.
her: They (caregivers) learn how to cope with anything because if you can cope with a mentally ill person you can cope with life.
(Laughter)
me: I guess that’s true, mom. Well, we love you.
her: I love you all.
me: If you wanted to talk to someone who is having a really rough day, or who is in kind of a dark place right now, what do you want to tell them? Because you were in a pretty dark place not that long ago and now you are okay. You are talking to me on the phone and you are laughing and having a pretty good day. What do you want to say to anybody right now who doesn’t feel optimistic?
her: Try to see the other person’s side. Try real hard to see the other person’s shoes. There is always someone walking in worse shoes than you are walking in. And if you can see that, you will know you are blessed.
me: Yeah, we do that a lot, don’t we?
her: Yes, yes.
me: Have gratitude.
her: I know the staff wrote a dictionary that they had.. It was their job to write what they saw about me. There was only one girl or man who beat me at staying at Laurel Ridge the longest. I was there 48 days and I wonder if they had better insurance than me.
(Laughter)
me: Possibly!
her: Because I was well long before they sent me home. Also, one of the schizophrenics there said it’s a trap. It seems like it’s the same people who always go. I remember one girl from before. And people there love to share. They share clothes, they share bedrooms, bathrooms, everything.
me: Yeah.
her: And, it’s very nice for social interactions.
me: Yeah. Um, sometimes..
her: And I’m way too isolated right now.
me: Right, right.
her: And I’m honored to have Emily and Seth in my life. They are the best thing that ever happened to me.
me: Thanks, mom.
her: They walked through hell and they are still alongside me.
me: We love you.
her: And they are the blessings of the world.
me: Sometimes I want to talk to you about your experiences and your illness, but I worry that I might stress you out or agitate you or something. I wonder sometimes if you feel like you want to talk about it a little more, but you don’t get the opportunity to?
her: Um, I wonder if mental illness’s root cause is something that happens in childhood or teen years. The root cause that we can’t cope with like other people. Like molestation or bullying, or… or things like that.
me: A traumatic event.
her: Our voices are bullies. Our voices are the bully of schizophrenia. And it’s a very cruel disease. There was one girl there, about four feet tall. Um, my age. But she looked like a little girl. And she babbled. Non-sensical talk. And that is cruel. The disease is that cruel, that she constantly babbled non-sensical talk.
me: Yes.
her: And it is not life-threatening, unless you commit suicide.
me: Yeah.
her: And I don’t own a gun on purpose because I’m afraid I’ll get sick and might use it on myself accidentally.
me: Yeah, yeah.
her: Also, I’m not a threat to other people or would never harm anybody. There are people in mental institutions who would harm other people, but they are the exceptions, not the rule.
me: Do you think some of those people who have more violent tendencies probably could be more successful if they were treated better or had better access to care?
her: I think they need to get the root cause of their aggressiveness out. I am aggressive with my mouth when I’m coming off drugs or narcotics, which I take. Or nicotine, which I take. And I wish I weren’t  passive aggressive. That’s my worst is being passive aggressive. I need to put myself in the other person’s shoes a lot more than I do.
me: When you feel agitated and upset and I guess, psychotic, do you remember how that feels? Can you remember that right now, that you are feeling well and you are lucid and you are having a good day and your nightmares are gone and your voices are gone.. do you know how that felt when you were weren’t well?
her: Yes, yes. I tried to substitute everybody. I tried to correct my thinking that causes schizophrenia. People I haven’t really forgiven in my life, I tried to correct my thinking about those people and think to myself “they must have worse problems than me to have acted like that towards me in the past.”
me: How hard is it to correct your thinking?
her: It’s not that hard to correct my thinking. But it took a miracle drug – depakote – to get me off the nightmares and the voices, so I can be honored to be on behalf of the mentally ill.
me: A lot of people that you don’t know, know about you and know about our story and  root for you and our family and care a lot about you, mom.
her: I know that, and that makes me feel real good and I wished I could be as good a person as they are. Because I think our family is worthwhile, because we have a lot of love.
her: Seth has walked through hell with me because we live in the same city. And he’s always there for me when I have a problem and I try to help him by telling him I love him and I’m proud of him, like I tell you, Emily. That I love you and that I’m proud of you.
I think that’s very important to tell your children that you love them and you are proud of them. It think child abuse is terrible.
me: Right. Do you and Seth sometimes, because you are so close and connected, I think you guys sometimes have some frustrations with each other, but.. you usually work it out.
her: Yes, we have frustrations with each other. And usually I’m wrong.
(laughter)
me: I think Seth knows that, and he loves you and that’s why we, of course, love you and stick with you even when things are really rough and difficult for all of us.
her: Yes, I don’t even remember Christmas Eve in the hospital when he was there and I’m very sad about that.
me: Yeah. That’s okay. That’s not your fault.
her: Oh, I know. I want everyone to know that mental illness is not your fault. And you are all beautiful people. You have a cruel disease that makes you cruel and mean sometimes and if you can change your thinking and try to look… the sun is going to come up everyday and the stars are going to come out at night, even if they are hidden by the clouds.. and there is usually a rainbow at the end of a sunny ray. I would like to think there is a reason we are on this earth.
me: Hey mom, I’m sorry to interrupt. Your phone is kinda cutting out a little bit.
her: Oh, I’m not speaking clearly into it.
me: That’s okay, it was just a little bit garbled there.
her: I do have side effects from my medicine, which makes my hands shake a little bit. But I’d rather have side effects and my brain.
me: Yeah.
me: Mom, I’m gonna take us off speaker now. I think that was really nice what you said. Um, I think people will be really happy to hear from you and I loved how optimistic and nice you were about some of the rougher parts of mental illness.
her: I love you very much, Emily.
me: All the hope and inspiration and niceness in you is really clear to me and to people who know about you and know about us and even though we know life is really hard for you…
her: You are a nice person, Emily. Just as nice as I am.
me: Well, I got it from somewhere, right?
her: Well, hopefully it was from me.
me: Thank you for doing this. I appreciate you being so honest. What you are saying and being so open about your illness, and your life and your thoughts, I think is meaningful to other people who like to hear it. So I just wanted to thank you.
her: Oh I hope so. I hope so. And try to keep a sense of humor. I kinda got in an argument in the doctor’s office with Seth. And on the way home, out of the clear blue sky, Seth said “I love you.” And that was the best think he could have told me. Because I was feeling so aggressive. And then he said something else and he laughed and that broke the ice and then I started laughing. Try to see the sense of humor in the mentally ill.
her: We can say some ridiculous things, can’t we?
me: Yes, yes. But we know that it’s not really “you” saying those things – we understand that your brain is all kinda mis-wired at those moments and I know what you are saying is not making sense.
her: Our brains are mis-wired and firing wrong neutrons at each other or something like that.
me: Right, right. And then when you come back around and you are having a conversation like what we are having today, it’s obvious that you don’t believe those things and that’s just a side effect of an illness.
her: Yes, thank you for telling me. It really is not your fault, you people who have schizophrenia. We struggle so hard to get rid of the voices.  We need more money for research.
me: Right.
her: For better drugs.
me: One of the things I believe, mom, and we’ve talked about this before is that part of the reason we struggle to get more funding and more care and more support is because of the stigma and that people feel ashamed.
her: Yes, stigma. We’re not doormats, and we’re not evil. Some of us do wrong things.
….
me: I think a lot of people need to understand that severe mental illnesses like schizophrenia and bi-polar and really bad, severe depression or severe anxiety, or whatever – there’s a million different versions and variations of tough mental illnesses that people cope with all the time, but that – we’re all just people, right?
her: We’re just people underneath it all, who have wrong thinking wired into their brains.
There was a patient there who couldn’t get over the death of her daughter. It depends on your make up, and your strength. Other people have been molested, raped, hurt.. and they can cope much better than the mentally ill. But I do believe it’s the root cause. If we don’t spend more money on research for the mentally ill, we will never get to the root cause. We are only treating the symptoms.
me: Right, I agree, mom.
her: Thank you for agreeing, Emily.
me: Well, I love you. I’m going to take you off speaker and we are going to wrap up our little phone interview, okay?
her: Great interview, Emily.
me: Thanks, mom. I’m gonna take you off speaker now.
her: Okay.

Compassion: compare and contrast

youareinthisworld-mom2008

My mom has schizophrenia.

But sometimes I’ve been jealous of other daughters whose moms have cancer.

Yes, I said it.
Cancer gets acceptance.
Schizophrenia gets questions and judgement.
Cancer gets meal trains.
Schizophrenia gets isolation and lost friends.
Cancer gets balloons and rooms decorated in the hospital, and flowers and visits.
Schizophrenia gets locked doors in state hospitals and cell phones turned in at the nurses station. No selfies with mom allowed here.
Cancer has clear expectations. It will be terminal, or treatable.
Schizophrenia might mean functional periods or homelessness. The future is wildly uncertain, daily. It might last a few years, or decades.
When cancer looks like cancer – hairlessness or swelling, sunken eyes or weakness, we understand.
When schizophrenia looks like schizophrenia, mumbling to unseen people on the street or urine soaked and manic – we turn away.
Time taken off to care for a relative with cancer is difficult, but understood.
Time taken off to care for a relative with schizophrenia is met with skepticism, judgement and suspicion.
If an ambulance is called to take a very sick cancer patient into the hospital, it’s scary and traumatic, but is handled gently and professionally.
If an ambulance is called to take away someone with schizophrenia, sometimes it doesn’t come. Instead a patrol car arrives. There is no stretcher, but often handcuffs. Sometimes the cops make small talk and laugh on the sidelines. You might overhear “she’s a regular,” from one of them. Sometimes no care comes at all.
Cancer patients get a team of doctors who work closely with the family members to make a support system.
A person hospitalized for schizophrenia sometimes has trouble even using a phone to get connected to their relatives. Sometimes relatives cannot even get ahold of them without a “code.” Doctors, nurses and social workers who actually return phone calls are a rarity.
When a person has cancer and is suffering greatly, nobody asks the family why they are allowing their loved one to suffer this way. Nobody questions that everyone loves and cares for their relatives with all their hearts.
When a person has schizophrenia is suffering greatly, the caregiver is often questioned. “Why is she living this way? Who is cleaning the house? Why is she in the street again? Where is her family?”
Cancer can lead to long years of enduring pain, suffering and death.
Schizophrenia can, too.
I’m going to tell you honestly, writing this makes me very uncomfortable. I do not like comparing suffering, because suffering is relative. One person’s hangnail is another person’s broken leg. My mom’s schizophrenia is not more or less than your mom with cancer.
I get it. If my mom had cancer, it would be heartbreaking and awful. I know this because I can have empathy for people with cancer and I can relate to the grief and heartache their loved ones are enduring, also.
I can have empathy for all suffering people, with any type of disease.
But there is this sad thing that happens when it’s a “mental” illness. We suddenly draw weird lines about who gets our compassion and who gets our judgement.
I would not have batted an eye to say “my mom has cancer,” when I was growing up. But I rarely told people so boldly “my mom has schizophrenia.”
Even as a child, I knew it was a disease unlike others.
If I had a hospital story about “the time my mom had a heart attack,” or the “time my mom was going through chemo,” or the “time she got in a bad car accident,” I would not be afraid or ashamed to describe the experiences.
But my hospital stories about “The time she drank bleach,” or “the time she was shackled after being naked in the streets,” are reserved for the closest of friends.
Here are the things my mom with schizophrenia has in common with your mom with cancer:
She loves me.
She wants respect.
She needs dignity.
Compassion and empathy are important to her.
She’s suffering sometimes, but not always.
Her illness can be frightening and overwhelming to her.
Her illness can be frightening and overwhelming to her family, too.
She did not choose her disease.
She is not defined by her disease.
She is a human being.
I love her, just like you love your mom.
I love your mom, too.

The lie I told

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It was about 9:30 p.m.

I was sitting in my car, in the parking lot of Target, having an odd conversation with a producer for the TD Jakes Show.
Sweat was gathering in the folds of my belly and dripping down my back. My car AC is out – again.
I’m trying not to freak out that I have nothing appropriate to wear on a TV show, or that I’ll be on a flight the next day to Los Angeles.
Earlier in the day, I had to actually block my mom’s calls. She was on a rampage, calling me dozens of times in her angry hysteria.
Everything feels weird in the light of the dark parking lot.
The lady on the phone is so nice, and kind, and explains that this is a survey they do with all guests. Some of the questions are quite personal, she explains, and I can almost hear the apology in her voice.
“I understand, no biggie! I’m an open book!” I say cheerfully, and I mean it.
She also told me I don’t have to answer the questions if I’m not comfortable with it.
No problem, I think.
We get through the household income, what I do for a living, do I have kids? How old are they? What are their names? Am I married? How do I rate the happiness of my marriage?
So far, so good. I’m getting through this, feeling curious about the process and amused at how odd some of the questions are. I think to myself “this is the weird side of show biz.”
Then she asks “Are you taking any medications?”
It came out really fast – “Nope!”
The lie I told. I didn’t even have a moment to consider this.
The answer was like a bullet.
But if I had said “yes,” then I would have to explain.
If I had said “Yes, Zoloft,” my composure would have crumpled.
If I had said, “Yes, I’m taking a prescription to help with my anxiety and depression right now,” I would have also been tempted to add “But I”m TOTALLY FINE! I swear! I’m NOT crazy.”
My easy laugh, my way of smoothly answering questions would suddenly have given way to stumbling and over-explaining and nervous laughter if I had said “Yes, I’m taking Zoloft.”
That part of the interview glided by quickly, but I felt the fire of the lie spreading shame on my shoulders and the nape of my neck.
Everything I stand for – authenticity, fighting stigma, standing up against the shame of having mental illness – was suddenly covered in ambiguity after that moment for me.
Why had I lied? I was not brave. I was ashamed. I still am.
Many more questions… I can’t remember them all – but this one, “What is your greatest fear?”
Without hesitation and all the honesty in my heart, I said “That I’ll never accomplish anything amazing before I die.”
***
I did the show. I said my part and talked easily about what I care about and believe in.
I explained how I want people to understand about mental illness by seeing my mother.
I want them to see how beautiful she is, and understand more about schizophrenia.
It went fast.
Everyone on the set was incredible.
Every person who took care of me was warm, authentic, and passionate.
tdjakes
***
I got back to my room after it was all over and looked at myself in the mirror.
Snapped a selfie to remember this.
I didn’t really look like me. There was more make-up on my face than I’ve ever worn in my entire life.
The glued on eyelashes were weird, and funny.
I peeled them off and mused about how different they look in my hand.
What they look like when they are what they really are – a slightly gross-looking collection of fakery.
***
Those who have been following my project loyally have wondered where I went suddenly. My voice went quiet. The stories and images weren’t posted so much anymore.
The truth? I had a freak out.
My summer was HARD, man.
So here’s the truth – the letters, the messages, the emails crushed me.
Every day the stories and sadness from everyone. I felt every. single. one.
Worse? I could not reply. I could not keep up. I HATE having an auto-reply on my FB messenger.
I HATE knowing that someone felt moved enough to write me and I didn’t have the strength or time to reply with a personal note.
Suddenly I had oddly created a situation where people wanted to connect, and reached out, and got silence. From me.
I never wanted it to be this way. A community formed and I was not a good leader.
And so the anxiety began to build in the pit of my stomach and not go away.
I would wake up and feel like I was on the top of a roller coaster about to drop.
I would read the messages and then want to go back to sleep.
It became difficult to do basic things like make lunch for my kids, or reply to texts from friends.
Lying is so awful, so I hid out, instead.
Hiding is the safer but lonelier alternative, it turns out.
***
It’s been about two months since the Big Darkness loomed over me, and I’m stronger now.
Meds WORK, people.
You know how I know? Because I’m BACK.
I’m doing what I do. Being honest. Truth telling. And fighting.
You know what else? From this experience came the epiphany of my mission here.
My job isn’t to be the only voice.
My job is to connect people through their stories.
I can’t answer all the emails and letters. But I can help people find each other.
And I will.
***
I’m moving forward on getting a non-profit established so I can pursue this goal.
I’ll be focused on creating a web platform that can help people connect directly and be stronger together.
It’s in the beginning stages, but I have so much faith in this idea. There will be many more details to come.
I’ll be using funding from the gofundme to work on this, and also helping my mom with some much-needed essentials, too.
We are not even close to the amount of money it will require to build her the home I dreamed of, but I don’t want to let that stop me from helping other people while we still hope for a better life for her, too.
***
Thank you to every person who reads, comments, shares, emails, messages me and supports me and us.
I cannot always reply. But I hear you and see you and care about you.
Thank you.
Thank you.
Thank you for making my mom’s struggles meaningful in this world.

Dead kitten

deadcat

*** 

Tonight, my mom tried to give mouth-to-mouth to a dead kitten.

It was only a few days old.

She called me sobbing. I knew this was coming.

I hadn’t allowed myself to hope the kitten would make it.

The rest of the litter had already died. The mom, a feral cat that lives in and out of her house, had abandoned her babies. Who knows why.

This situation was very upsetting and heartbreaking for my mom, whose chore has been to gather up dead kittens and put them in the trash this week.

The pragmatist in me felt anger first. “Ugh, MOM, stop feeding these wild cats! They only cause problems!”

I wanted to scream at her, but not because I’m mad about the cats.

I was mad about this moment. The one that came tonight, where she cried her raspy sobs into the other side of the phone and I stood there helpless, letting her grieve and offering my calming words.

“It’s okay mom. You tried hard. Nobody could have done much better, okay?”

“Okay,” she cried. “At least he purred a few times. That means he felt some happiness.”

More sobs.

“Yes, that’s right, mom. Do you want to stay on the phone with me while you put him away?”

“I want to pray over him first. Dear God. Thank you for his sweet life. Thank you for taking him now. Amen.”

“I named him Lorazepam,” she said. “He was a gift.”

This detail is when my own warm tears began to spill out, silently.

My cynical thoughts began to intrude almost at the same time my cheeks got wet.

Hey, that’s awesome. Your mom named her dead kitten after her medicine.

That is an amazing little detail. Of course she named the kitten after her medicine…. Ugh.  Fuck this shit.

I can already hear the judgement from animal lovers as I’m typing this. “Couldn’t she have called animal control? Surely there was someone who could have helped. Maybe if they had tried this, or that…”

No. The answer is NO.

She called the vet. Nothing they can do, they told her.

She called Animal Control – who told her she would need to call the sheriff’s office or something first, to which my understandably paranoid mother said “no thank you.”

I put a post out to Facebook asking for any locals to take up the cause.

Nothing.

Here’s the thing.

The dead kitten? It’s awful.

But it’s not just that. It’s everything.

My mom had real hope she could keep that little thing alive. She was really hoping.

He was the last one left.

But he died.

There is not enough help.

I promise you, there is not enough help.

My mother, a 64-year-old, kindly, creative, grandmother, who wants to save all the kittens, is living alone inside a falling down house, with a colostomy bag, holding on to my words on the other side of the phone, and thanking me for being there, while she bags up the still-warm creature, praying to God and slurring her words because she took extra “lorazepam” to get her through the angst of today.

This is what it looks like.

This is what it really looks like.

And I keep hearing she’s one of the lucky ones…

If you have one single moment of judgement right now, feel free to private message me with your questions – I’ll be happy to spend a few hours explaining the basics about “why isn’t there live-in care?” or “Where is her social worker?” or “Why is she living alone?”

For now, please just trust me when I tell you, there is not enough help.

RIP, sweet little Lorazepam.

*** The image for this post was taken four years ago. It was not her cat. I wrote about dead pets back then, too. You can find another sad essay, HERE.

What we need

The most absolute, crystal clear, important lesson I’ll ever learn in life came from my mom, a woman with schizophrenia, on the edge of a breakdown, in the middle of a house that is literally falling down around her.

“What do you need mom?” I asked, feeling desperate.

I was hours away from climbing on a plane to go back home to Florida, so we were both extra sad.

The question was loaded.

I already knew what I wanted her to say.

In my imagination, she might have (she should have) shouted “I want a new goddamned house! I want to not have this disease anymore! I want a million dollars and a walk in the ocean and a five-star restaurant meal! I want my life back and my college degree and a normal, storybook family with apple pies baking and my own car that I can drive and a fucking loyal dog and soft carpet and a spa-like bathroom.”

I’m not even sure why I wanted her to say those things.

It would have been crushing to me.

Maybe she does want all those things, but she’s my mom, and she loves me, and she knows what’s in my head and heart already when I ask.

So instead, she answers back with what she knows I can deliver on.

“Love.”

It’s one thing I can give her with everything, over and over and over, without running out, ever.

I need to confess that the clip from this video was too painful for me to even watch until just recently. It’s been more than a year since I shot this footage and I knew what was there, but I haven’t wanted to look at it.

Maybe I wasn’t ready to receive my mom’s message to me until just now – when I have the clarity and strength to hear it.

When I made the first video, the one that began this project, I just wanted to give my mom my love. It was the ONLY thing I had to give, and she was the only person I wanted to give it to. But she refused it.

She wasn’t taking my calls.

In desperation, I guess I kinda “gave it away,” to the internet.
“Here, people of Facebook – take my love for my mom and my lessons she’s taught me. It’s all I have to give right now.”

What I have learned about love and giving it away in the few short months since I started this project, is that when you feel the most low, the most afraid, the most desperate and hopeless, you need to give away more love.

That’s right.

Give a hug to someone when YOU need one.

Give your last dollar.

Send a postcard when you feel loneliest.

Extend the grace that nobody has given you.

Withhold your judgement of someone even as you are being judged.

GIVE MORE when you have the least, because your strength will grow from giving it away.

I know this is true, because I’ve heard it from everyone writing me, thanking me, telling me they are grateful for this project, and my mom and our family. I know this because I can see love being extended not just to me personally, but among people supporting one another in the comments on my FB page.

A little bit of love for my mom, given away into the big space of social media grew so much bigger than it ever could have if I had held it inside. I had no idea about any of this when I did it. But now that I know, I want to share my lesson.

And you know what?

Don’t be modest – do something kind for someone, and share it. Talk about it. Tell your friends. Tell ME about it.

I like to hear stories of people who reach beyond themselves and then aren’t embarrassed to actually brag a bit about it. It feels good to help people and it’s inspiring to know there are people out there gaining strength by going beyond just themselves.  And you know what? Share your story and I’ll read it to my mom.

I’ll give her the details and she will hear my message to her:

“Mom, your love has spread far and wide. This is what your love has the power to do.”

A dumpster plant, a three-footed dog and holding on to hope

Sometime around 3:30 a.m. this morning , my dog, Sammy, woke me to go outside.

This is his preferred time to do his business.

My husband and Maddie were snoring in bed next to me, and I’ll admit I lingered a bit to see if he might just hold it.

Nope.  He stuck his nose in my face.

It was on me to take care of this.

I did a silent scream in my head.

“Why do we have this &%^&%-ing dog?!”

We adopted Sammy from the Humane society almost two years ago, now. He is a damn cute dog. Some kind of rat terrier mix.

But he’s missing a foot.

That doesn’t make him any less cute, of course, but it does make him more interesting.sammy-sept29sammy-sonny

A few times, kind people have urgently said to me “Something is wrong with your dog! He’s limping!”

I just laugh and say “Nah, he’s fine. He only has three feet, see?”

I was not seeking a footless dog when I found his photo online at the Humane Society. I was just looking for a buddy for our other dog, Sonny, whom we’d adopted about four years earlier.

When I showed up to check him out, he was just as sweet as I knew he would be. Then he stood up and I noticed the foot. “What the hell? Where is his foot?”

Too late. I was in too deep. He had already smiled at me and I fell in love.

After it was confirmed that Sammy got along like family with Sonny and my girls, we loaded him up. Now he’s here. When he first arrived, he ran and jumped and we were all so impressed with how happy he was and how easily he fit in. Maybe this was his “audition” to us. A few months after that, he began to get skittish outside and want back in, immediately. We realized that the traffic on our busy street spooks him. It’s too overwhelming out there.

It was a puzzle. He had seemed just fine at first, then he got weird. Maybe he settled into feeling comfortable enough with us to be afraid. We’ve speculated he may lost his foot getting hit by a car. We will never know.

So now, we are at a time when Sammy poops in the dark, quiet, middle of night. When we take him out in the daylight, it requires coaxing, standing right near him, and constantly assuring him he’s a good boy, and he’s going to be “okay.” Sometimes he still scrambles inside, despite our attention to him.

It’s super annoying, but this is where we are at.

There is a benefit vs. burden quotient on him now. We love him tremendously and Sonny has a real buddy now. We could not imagine life without him.

But honest-to-goodness, he’s a pain in the ass very often.

….

Maybe I have a need to nurture temperamental things.

In the last year, I’ve taken up house plants. Most of them do very well, and I’m pretty proud of what I’m learning about growing things. They are lovely, but create extra work for me. A few weeks ago, leaving a meeting with a client, I spotted a fiddle leaf fig tree, left for dead next to a dumpster. It only had about 4 big leaves left, most of which were brown. “Oooooh! A fiddle leaf!,” I thought. It was still slightly green, but barely hanging on. “I can save it!”

Whoever tossed this plant had no idea what they just lost.

They didn’t know how to love it. They over-watered it.

I’m sure they meant well, but probably didn’t know what to do when it started having problems and turned ugly.

So they tossed it.

I brought it home, let it dry out. I put it in a good spot. I gave it a bit of fertilizer and I named it Francesca.

“Don’t put it near our other trees, just in case it has some kind of disease,” my husband said.

“You’re right. We aren’t sure what’s wrong with it yet.”

We laughed together at my silly plant obsession.

FRANCESCA-BEFORE

Turns out I was right. It just needed the right kind of care, and faith in it. Everyday I go outside to find a tiny new baby leaf twisting out of the stems. I think she feels good now. Helping her makes me feel good, too.

Benefit vs. burden, you know?

Last night I talked to my mom on the phone.

“I got your letter today,” I said. “Thanks.”

“I don’t even remember what I wrote,” she laughed.

BZ5A5070

This is what she wrote:

Dear Emily,

Just thinking of you. I finished reading “Out of my Mind,” about an hour and a half ago. I’m so glad you sent it to me. It was written by an author that got the Coretta Scott King Award a couple of times – an English teacher. It has no mention of color in it whatsoever. I cried towards the end. It gets very good. Thank you! I love you. Mom. xoxo”

Here’s the Amazon description of the story, for those who have not read it or heard of it.

“Melody is not like most people. She cannot walk or talk, but she has a photographic memory; she can remember every detail of everything she has ever experienced. She is smarter than most of the adults who try to diagnose her and smarter than her classmates in her integrated classroom—the very same classmates who dismiss her as mentally challenged, because she cannot tell them otherwise. But Melody refuses to be defined by cerebral palsy. And she’s determined to let everyone know it…somehow.”

I reminded my mom of what her letter said, and we had a good talk about the story.

“I didn’t even realize the little girl in the story might be black,” my mom said. “I made assumptions.”

“I know. It’s easy to do,” I said. “We are learning constantly.”

We talked about the author of the book, Sharon Draper.

Draper’s own daughter has cerebral palsy, I told my mom.

“Oh wow, that’s why she is able to understand so much. That must be so hard.”

I told my mom Draper’s age – 67.

“Oh! She’s older than me! Maybe there’s hope for me yet,” she said laughing. “Maybe I can write a book still.”

“Yes, mom. There’s plenty of hope left for you,” I said.

And there is hope for her. She’s made it through state hospital trips in handcuffs. She survived drinking bleach in one of her darkest psychotic moments. She nearly lost her life 8 years ago after emergency bowel surgery and has been living with a permanent colostomy bag ever since.

3121062398_1c82406daa_bShe’s still around, and strong, for a reason. She’s 64 years old and her best years might be ahead of her still. I believe it. I still have hope for her accomplishing amazing, important things in her lifetime. More hope than she does, probably.

But unlike an abandoned houseplant, or a 3-footed Humane Society dog, I need more help than I have right now to let my mom be her fullest potential.

I’ve been urged by many to begin a fundraising campaign, but have been reluctant so far because of several reasons. I’ve been embarrassed and ashamed to ask for money. I’ve been afraid people might judge me, or us, or question my motivations in my storytelling project. I’ve been full of doubt that maybe I would ask and nobody would give. I have felt like I need to have all the details just exactly perfect before I ask. What if nothing I’m daring to dream about turns out the way I imagine it could?

But I’m going to swallow my fears and ask now. It’s my hope to give my mom an opportunity she’s been missing for her whole life. I want to build her a small apartment or addition on to my home so she can have a clean, safe, and less lonely situation.

My house right now is only a 2-bedroom, 1-bath. We’ve fit here just fine and had a lovely life here for nearly 10 years in less than 900 square feet. But if I want to allow my mom to be here too, we need more physical space.

Additionally, I want to establish a non-profit, named after this project –  You Are In This World – which will continue for the rest of my life.

I want to allow my mom an opportunity to work with me, side-by-side, on this project as she is able.

I have 1000 dreams and ideas to do good in this world and help tell stories about mental illness to bring us all together. I think stories connect us and make us better, compassionate and more understanding people. I would be beyond grateful if you are able to contribute a little bit towards my goal of helping my mom, so we can keep telling our story, and yours, too. Here’s the link and a little more detail about my fundraising campaign. Thank you. ❤  https://www.gofundme.com/youareinthisworld

Fish food

BZ5A2348Yesterday morning, I ugly cried into the ocean.

I heaved and tried to breathe and thought I was okay, and then I just began again, and again, gasping and crying.

I felt it aching in my gut muscles. It hurts, crying that hard.

I was chest deep in saltwater as warm as a bath. I was alone, looking at a sunrise gift.

The reason I was there was a lie. I screwed up with scheduling for work (my head is not totally clear these past days), and was too ashamed to admit such a mistake to my family.

Childcare had already been arranged. Schedules had been shifted. It was all a big mess.

So instead of telling them, I took advantage of the situation and headed to the beach, alone.

As I was wading into the water, all the comments, letters, emails, messages were swirling around in my mind. I’ve never had so many people tell me how brave or strong or loving or amazing I am in all my life.

I was thinking of my mom, who I still cannot save, and my brother, who is scraping by, and my own family, who thinks I am working at this moment, and I’m not.

I’m nothing. I’m not brave or strong or amazing. I can’t even keep my own schedule straight and I screw up every single day.

I began this project out of sheer desperation. It wasn’t an act of courage.

It was a scream in the dark. The doctors were not keeping us informed. My mom was not communicating. Everything was falling to pieces when I made that video for her.

Nothing, in all these years, has been enough to get my mom into a better situation. Never enough money, never enough time, never any new solutions.

I’ve daydreamed about hitting the lottery, like a child. The house I could build her, the places I could take her, the things I might do for her, and my brother.

I could save them. I could save us all.

But the years have relentlessly passed, and instead of that fairy tale ending, it’s just been hard, brutal reality with harder times ahead.

And looking into the vast ocean ahead of me, I felt so, so small and inadequate. So that’s when I cried.

When I got my shit together finally, I pulled my mask on and stuck a snorkel in my mouth and went under.

It was so quiet under there. Just my breathing, which was panicky, at first.

But as my breathing leveled out, I began to see.

I could see the ripples of the ocean floor and the rainbow light arcs dancing on my arms and the floating specs of sand like glitter in the underwater sunbeams.

The fish began to appear. Tiny, beautiful little things with yellow fins, swimming all around me.

Deep breaths. Floating…

“What is the lesson here?” I asked myself.

“What is the lesson? What is the lesson?” I kept asking.

And then the fish began nipping at me.

“I’m fish food,” I thought. “That is the lesson. I’m nothing but fish food.”

I laughed at myself, and felt better.

Later that night, after most of the petty anxieties of the day had been resolved, I spoke with my mom on the phone.

She was in a good mood.

She mentioned how she had been feeling a bit nervous earlier in the day, but she was okay now. We talked a little about her mind and I said “I think you have a beautiful brain.”

This is not something I normally might say. She paused and said “Thank you. Thank you for saying that. Some parts are not so beautiful though. Some parts are kind of ugly.”

“I know, but those parts are not your fault.”

The next pause was too long and felt too heavy, so I said “Let’s not get too deep.”

She laughed and said “Yeah, don’t go too deep, or you might fall.”

To the caregivers (And my brother, specifically)

This writing is based on my experiences caring for my mother in my early 20s for a few years, and my observations of my brother’s care of her for the last decade after I moved away.

It can be difficult to speak about the burden of caring for a person with mental illness. We love them too much to complain very often in public. We know the stigma they carry in addition to their illness is already terrible enough. As a result, the weight of caring for them can often become very isolating.

We need to help the helpers. They are on the front lines. They are often the only lifeline to a person who is falling away.

I wrote this as a guideline of sorts, to a person who would take on this job.

I’m writing it to my brother, Seth, who already knows all of it. I’m writing it to my younger self, who didn’t have a grasp on most of these ideas at the time I was neck deep in caring for her.

I’m writing it for anyone who is living this, or has lived this, and would take comfort in a familiar story.

How to be a caregiver to my mother, who has schizophrenia

1. Have endless patience and surrender, fully.

She has a terrible illness. Sometimes she fights against her own care.

The $150 you just bought in groceries on a credit card might get tossed on the lawn if she’s feeling psychotic. She will still need food tomorrow and she can not pay you back.

When she’s stressed, she might scream at you that you forgot to pay her trash bill, or that you aren’t picking up the phone when she calls 15 times in two hours while you are at work.

She will tell you that you are conspiring against her when you’ve taken a day off work, drained your bank account, neglected your wife and daughter and showed up to take her to an appointment you fought to get scheduled, just to have her refuse to open her front door.This is just one of a thousand examples that will push you to the brink of walking away, giving up, giving in.

When you consider what would happen if you left her, the answer is that she would probably die.

You are in a committed, abusive relationship when you love your mother with schizophrenia.

But the abuser is the disease. It corrodes her mind and makes her into someone she wishes she was not. When she says she’s sorry, and she often does, she really means it.

You understand this.

When you forgive her, you do it fully and sincerely, then move on quickly.

“It’s alright mom. We’re okay. No biggie. I love you.”

These are the things you will say.

This is the reality of this disease.

You love her anyway. She cannot help it.

She did not choose this, and neither did you.

2. Let go of guilt.

This is not your fault.

There is always, always more that can be done.

When you walk into her home and see squalor and smell animal waste and piles of laundry and your instinct is to run away, it’s okay. Run away for a bit and leave it be.

After years of this pattern of cleaning up, then filth creeping back in, there is no urgency any more. “It is what it is,” as they say.

Create boundaries to preserve your own health and protect your capacity to love her.

You know that analogy about putting on your oxygen mask first? Well, it’s like that. Kinda.

Sometimes the choices you will need to make are terrible.
Delivering her endless supplies of cigarettes while she’s in the beginning stages of emphysema because the alternative is pure, relentless, unmanaged psychosis.

You will feel pulled in all directions and never feel strong enough for all of it. Something will constantly be sacrificed to accommodate something else.

Some days you will win. On these days, you will look over your shoulder, wondering “what the catch” is going to be.

Many days you will lose. It’s okay. On these losing days, love is all you need to remember. It’s the essence of all of it. It’s all that matters in the end.

Try hard to remember it. Try hard.

Some days you will forget the love part, and you will feel anger and hatred. That’s okay, too. It will pass.

Try to give yourself the same grace you extend to her.

Try to remind yourself that you are only human, and you are doing your best, just like she is.

3. Keep your heart and your mind open and take the lessons this situation offers.

Loving her the way you do means you will be a better person.

It means you will understand people better.

You will judge less.

You will care more.

It means you will learn how to soften and harden your heart at the same time.

It means you will learn about patience and forgiveness.

It means you will have separate compartments in your brain that can allow you to deal with horrifying and sad situations while also playing with your kids on the couch and walking your dog and doing the dishes.

It means that you have an elevated experience as a human in this lifetime, for better and worse.

4. Try to live in reality as much as possible.

Stay away from your dark thoughts, or deep sadnesses or burning rages.

You will go there from time to time, sometimes completely unexpectedly.

This task of caring for her, of loving her and living with her illness will spread itself like a fog over every single thing you do.

It will color the overheard conversations in the grocery store when you are picking up her supplies and medicines.

You will feel it in your fingers, holding on to the steering wheel while making the long drives for small tasks – doctor appointments, checking on her, stopping by, the smell of cigarette smoke, the outline of her silhouette in the window when you walk up to the house.

The sound of her snoring when you’ve stopped in to make sure she’s still breathing. You will hear it in real life. You will hear it in your mind before you fall asleep.

You will wish for more money.

You will wish for a miracle.

You will wish for more time for yourself.

You will wonder what it’s like to be someone else, with a different life, a simpler life, an easier life.

You will question where the payoff is. Why is all this happening?

You will wonder why there is not more help, why doctors can’t fix this, why social workers don’t step in more, why people don’t understand, why you feel so lonely, where the hell is everyone?

You will use placeholder phrases like “Whatever,” or “No biggie,” or “It’ll be alright,” so many times, when it is not alright. Not at all.

You will keep the worst stories, the darkest moments, the saddest thoughts close to your chest and not speak of them because it’s too painful to share, or too complicated to explain.

It’s okay to stare into that dark place in your mind for just a moment, but you must never linger there. It will make you weaker than you already feel.

5. Remember gratitude.

Gratitude is your lifeboat to reality. Look up and look around. Be grateful for breathing. Be grateful for having food, a family, a home. Elevate the minimum standards to a treasure.

It could always be worse.

It could always be worse.

It could always be worse.

This mantra is the drumbeat. Believe it, look around and see all that you have, take a deep breath and try to let some joy seep into yourself.

Try hard to let it wash over you and keep your heart supple and porous to receive it.

This mantra is hers, too.

She believes it, too.

It runs through our family like a river.

6. Remember she loves you. Even when it seems like she doesn’t.

She’s so proud of you. She wishes she could do more, be more for you, for her family and herself.

She’s doing her best.

You are doing your best.

You love her.

You love your family.

You are enough. More than enough.