Nick

As with many who I'm sure read your PS story, I am writing to both thank you and simply share in your experience.

My wife has been reducing from the medication Lamictal (Lamotragine) for almost two years, and in addition to her supportive family and our whole-hearted but at times ignorant doctor, I am her primary care provider. Your article intensely resonated with me, and every time my wife has dropped in dosage on Lamictal, I find myself reading your article again. She is experiencing extreme withdrawal symptoms. While we have been very practical and smart about our gradual reduction in dosage, each time it seems to do terrible things to her. And here I am, lying in my hammock after a horrible morning with symptoms she can't control, writing to someone who might just understand.

While she was once put on medication to help mitigate and mediate episodes of mania after the realization of a traumatic event in years past, she is now fighting horrible, drug induced symptoms trying to break free of this med. It's kind of ironic.

UPDATE: things are better, as with many withdrawals. She is stable, and we have a brand new 6 week old (today!) daughter. It was a long and arduous road as you well know...man did it kick our rear ends. But I love my wife, and was prepared for anything. Time heals just about everything, including her brain chemistry after being exposed to Lamictal or so long

***

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Lori

Editor's note: hold on tight for this one. A really powerful story from a courageous mom.
Hello Mark, I just wanted to say your article about your wife has helped me more than anything else. Thank you. My son is 27, unmarried and has had a psychotic break... just a week ago, to my knowledge. It could have been going on longer, but he had decided to live in GA with his grandmother & she only argued & fought with him, assuming he was just being immature & idk for lack of a better word, strange?!  I am estranged from my mother, because of her interference between me and my son.  I'd parent & she would undo it.  It was a never ending cycle of her bailing him out.. Looking back, that was probably this.
 
He called me, a week ago Sunday, and I knew he was dealing with something else. Something out of his control. Something terrifying.  He wasn't making sense, and he was insisting the FBI was tracking him through bar codes on his clothes.  He swore his grandparents were poisoning his food, he kept begging for the milkshake that would reverse those effects.  This call went on for four hours, and my husband was listening in upstairs and would fill in, when he could hear me break down into sobs in the kitchen.  He was a 911 dispatcher years ago & this day he saved my sons life.  We later learned what Zac was doing had a name "talk salad".
 
We flew him home to us in Texas, and I called every agency in the book.  I googled drug induced psychosis, as I knew it had to be this.  Zac had a past of drug use, surely this was a temporary state.  If I could just get him here I could get him into rehab.. That was the thought I kept repeating.  After hours of dead ends I reached a caring women with the state that offered phone council.  I got maybe five minutes into repeating what Zac had told me on the phone & she asked me to sit down.  She then began to tell me my son was a schizophrenic.  That it would be life-long & I needed to prepare myself.  I was dumbfounded.  I argued.. She stayed convinced.  She set up an appointment for Zac to be seen.  She said two trained therapists would come to my home and explain to Zac how the first out-patient appointment would go, she insisted this was best.  I thought it was over-kill & that surely once the "drugs" were out of his system and he was back home, I could manage this.
 
He missed three flights out of the Atlanta airport, until I got a Delta attendant to collect him - saying he was disabled.  He arrived around midnight, and when he turned the corner, and I took a first look at him... I stood there in shock.  It took every strength to compose myself, as he walked towards me looking homeless.  He held me so tight and for so long the reality that he was in far deeper than I had let myself realize, frightened me.  He was showered, but his clothes and shoes were rags.  His backpack was covered in mold.  Every item he brought with him I knew had to be thrown away, but he held onto each thing and wouldn't unpack.  He was pacing the floor and looking out the windows to see who could be watching him.  We got him into bed, and the ache I felt as I walked back downstairs and into my bedroom, as his mother, was a deep pit of a pain that I didn't know existed.  
 
He was here one evening, but the next night he ran away.  We searched.  We reluctantly called the police to tell them he had mental issues. (The woman I had called that arranged his doctor appointment kept stressing to me that should anything happen I should call the police and tell them he was mentally ill, but I remembered I had never acknowledged her) it was all pouring back.  I was now afraid for his life.  He was found and taken to the emergent mental facility here, Green Oaks of Dallas.  The cop that found him, came back to our home afterwards and said he knew Zac was suffering with mental illness, he had seen it many times before.  He told us he would open a file and keep it on record, so that the next time Zac was arrested he would be taken straight to the emergency mental hospital and not to jail.  My mind reeled with his words "next time".
 
He stayed 7 nights, he called me non-stop begging for me to come and sign him out.  His step-dad went every day during the visiting hour, as they would only allow one person, and he knew I wouldn't be able to cope seeing him there.  He took Zac his hoodie, but, I had to cut the draw string out as this could be used to end my child's life, this single red draw string.. He took him coins for the vending machine and the telephone and assured Zac we would figure this thing out together. When my husband arrived home he was broken, when he got to the part that he had held my son & apologized to Zac for being so tough on him over the years, I broke too.  "Is this our fault?" 
 
Zac is home, but it's not much better, and it's causing such stress here. I'm lost as to what to do next. He argues he's "not a minor".  He's right, he's not.. and him being 27 is very hard as a mom, I feel treating him like a child with forced medication & not allowing him to drive, and the daily fears of what he will do next, the now locked doors and disrespect & arguments is just too overwhelming.  I don't know if I can do this.  
 
Reading what you wrote has given me some much needed peace & resolve.  And had you not titled it the way you did, with a nudge towards humor, I may have skipped it.  I just hope I can continue to care for him here, hospitalization or a group home scares me.  But do I risk my relationship with my 17 and 5 year old?  No... it's such a difficult place to be.  - thanks for writing this..  You described my feelings 100% and I feel better after reading your words, it made it real, I felt comfort knowing I wasn't alone.
 
Fondly,
Lori, the mom of four boys...
Zac 27, Jake 21, Ben 17 & Owen 5
 
Since I wrote to you, a year has passed, and we've come out on the other side.  Zac had two additional hospitalizations since then, the last at the state mental hospital, and that was especially heart wrenching for all of us.  We were told in the beginning only the truly sick patients were admitted to "state" so when he was admitted, I felt all hope was gone.  But, he was released, he was med-compliant and feeling some better.  The voices had calmed down in his mind, and if they did speak, at least it made our Zac laugh.  It was better than the alternative. He seems child-like again, sweet hearted and affectionate.  We started with love for this child, and it would seem we were ending up with love as well, and for that I'm forever grateful. 
 
We, as the caregivers, love and adore our child with schizophrenia with everything that we are.  This child was my first born, he has been loveingly raised by me.. as mostly a single mother.  I had him as a teen and we had grown up together..  But this darkness he was experiencing, I just couldn't see it, maybe I was even blind to it.  Nonetheless, he was doing his best to hide it from me - the only person in this world that could reach him, and turn this around for him.  With one call in June of 2015, I heard his cry for help.  I can't imagine had I not.
 
Today, almost a year later.  He is enjoying his brothers and his life again.  He's stopped shaving off all his hair (to include his eyebrows and eyelashes).  The meds helped him gain some much needed weight.  His self esteem has gone up, and he's now even particular about his hairstyle.  It's a 360 degree difference.  He has a fabulous mental professional team of four that come to our home and talk to him, asses him, and bring him his meds, and are here for us at a drop of a hat.  I feel like the luckiest mother in Texas to have found such a group.  
 
But, even with all of that, I can honestly say we have given up pieces of ourselves forever to him, we've all sacrificed our simple way of life, for one that knows at any given minute we may be back in crisis mode again.  We are all on guard, all of the time.  It takes something from you, the word carefree has lost all meaning under our roof.  Something has died.  We are all still grieving, which I don't hear much about.  There's no grief counseling for the living.   
 
My younger sons, especially grieve the brother they knew before his mental breakdown.  As medicated, he's completely different.  He's no longer their "big" brother, they have had to help with his care, and learn what to watch for.  They say "we can remember Zac carrying us home when we'd skinned our knees, and lifting us into his shoulders to see the fireworks.. we remember the snacks he snuck for us, he was a good big brother, and now it's our turn to carry him".  
 
All my boys have moved home again, and I can't help but believe this was the reason.  This is our new normal, and we have to be okay with it, we don't get a choice, and I swear, we are all trying every day to settle there with Zac.
 

Our voice for our loved one with schizophrenia needs to be heard. My voice as his mother, his step-fathers voice, and the voices of his adult brothers are screaming for a successful fight for our BOY!  Because, mental illness is a down and dirty fight, it's a fight to survive.  

Zac is loved.. And we will stay by his side until the end.

Fondly,
Lori, the mom of four boys...
Zac now 28, Jake now 22, Ben now 18 & Owen now 6

***

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Anonymous

I struggle with similar issues with my wife and it is easy to feel alone, especially when she's in the throws of an episode and I constantly feel like the bad guy as I try to help her along. With medication, with sleep, with balance, etc. Reading stories about how others have found a way, reassures me to keep trying, to somehow get through the darkness she that the light will come again. ***

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Lindsay

I am a mother of 3 and have suffered severe postnatal depression with psychotic episodes, your article has helped me understand my husband more than I thought I already did. Reading your article, in parts, took me back to my hospitalisation after our second child. Nineteen years later my husband still sees me as having an illness, while I would disagree with him, I guess similar to your wife, he is right, as long as he doesn't define me as the illness. Yes, I still take anti depressants and am happy to take them, knowing that it is probably a lifelong commitment.

Now my eldest daughter (19 years old) who was diagnosed with severe anxiety depression at the age of 8 is taking us on the emotional roller coaster of mental illness. At the age of 14 she attempted an OD and was hospitalised in a secure unit for adolescents.

My poor husband must feel wrung out- 2 in 1 family.

update: Since then my daughter has been hospitalised, in fact she was just discharged over a week ago.
And so we continue this awful battle...

***

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Ann

I relate to your story as the daughter of a mother diagnosed with bipolar disorder, depression & schizophrenia shortly after I was born 45 years ago. My dad was you.  Until the day he died, he loved & cared for my mom through her illness, many hospitalizations, treatments, med changes, etc.  She was not the woman he married, his dreams shattered I'm sure.  He was the most caring, loving, humble, brave man I've ever known. He always put on a happy face for us & others.  He didn't complain or show any negative emotions.  I think he wanted to protect us from it as much as he could. We know that's not healthy either, but he did what he thought was best at the time. He raised me & my older brothers to the best of his ability working two sometimes three jobs to support us.  As a middle school aged child & teenager, I spent a lot of my weekends visiting my mom in different psych wards instead of doing normal kid stuff.  Long story short, our family was so different from most.  This was all happening in the 70's & 80's when mental illness wasn't talked about much at all & the medication concoctions were a mystery.  I had a great relationship with my dad as a kid & as an adult. My dad died suddenly at age 67 almost 12 years ago, & the only regret I have is that I never took the opportunity to ask him how he coped with it all, what got him through.

I have had the recent opportunity to tell my story, my perspective, to grad students who are getting their masters degree in education, wanting to better understand & care for students whose families live with mental illness. I'm not a professional, so I just tell my story from my perspective.....how my dad loved my mom unconditionally & how it all affected me.  I love & realize how amazing my mom is, still living & surviving with her disease. ***

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Katie

I an in current treatment for a mental illness, still not diagnosed. I am 52, I started a relationship with someone, and it has suffered a practical setback (he has adult kids, I have none).  I thought my internal agony was because of this, but I keep telling myself the story of your wife, how she has a loving husband, a son, and still suffered the agony of wanting to die, wanting to die.

So, I tell myself, truthfully, the pain is inside of me.  No one external - no matter how loving - can take it away.

update: I am "fine", living with a lot more focus on my inner life, navigating life more from the inside, if that expression makes sense to you.

***

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Amy

My husband has schizophrenia, and hospitalizing him, helping him recover, finding a way back from that caregiver/patient relationship to husband and wife has been extremely difficult. He's been stable for three years, but the worry that it will happen again is always there, on the horizon. I'd love to have the opportunity to talk with someone else who knows where I'm at, since the support not only for mental health patients but their caretakers seems completely unavailable, except by our own psychiatrists. It's such a hard road to walk down alone.

update: My husband is now quite stable, and has been for several years. It is always a challenge, as I suffer from PTSD myself, but with good support, both from mental health specialists as well as from family and friends, we no longer feel so alone.

***

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Jenn

While not exactly the same, my husband and I have experienced a similar experience.  We married in 2001 and in 2004 I was hospitalized in the psych ward for 30 days and diagnosed with BiPolar.

Thank you for writing and sharing your experience.

We have two children now, ages 9 & 7.
My disorder is pretty stable and our marriage is good.  I am so thankful for my husband! -from Ontario, Canada

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Lara

I am turning 32 next month, and on Easter had the (tearful) realization that it was 9 years to the day that I was released from my first hospitalization where I was diagnosed with Bipolar Disorder.  I have since been hospitalized three times.  I have successfully managed (to me that means psychosis free) my diagnosis with meds for 5 and a half years at this point.  While psychosis feels far away in some regards, I am in constant awareness that it could jump out at me again.  While the story of you and your wife touched me on a personal level, what I really found myself relating to was your stance.  See, my boyfriend suffers from chronic pain (interesting pair, huh?).  I find myself again and again taking the caregiver role.  Thinking I know what is best for him- better than he knows... kind of like what you'd said about your wife.  I don't know where we'll end up.  Roles may be reversed as I face my own demons at some point.  But listening to the two of you and reading your article has made me realize that we can move forward in this together.  ***

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Janel

Thank you so much for your writings. I found your article up on my husbands phone and he asked me not to read it. Now I think I understand why.
Five months after the birth of our 3rd child, I had an episode of psychosis and a total of 17 days spent in a psychiatric facility. My husband did not respond as gallantly as you. In fact, he didn't visit or take any calls from me. Initially I was livid and wanted a divorce, but my therapist and psychiatrist advised against any rash decisions.
Reading your article made me realize how scary it is for the partner as well. My husband was scared and shut down. Since that time he has learned we can't function as a couple if that is the case.
I wish you and your family the best. (I hope Giulia's dream of 3 kids can become reality)

***

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Mike

I just read your, My lovely wife article. I found it from google, typed in my wife is phsycotic. I'm going through almost the same thing, I'm laying on my coach right now trying to figure out how I can get out of this marriage, while keeping her safe and our 2 yr old girl safe. I love her to death, she's my best friend. We have been married 4 years and been happy for most of that, a year after our baby was born, she started drinking heavily. She went to detox a few times, and a 30 day inpatient, she's been clean for a few months and what I thought was a alcoholproblem turned very quickly into mental health problems. Now I find out she's always been phsycotic. she's also suicidal. She hurts herself.  Today I told her dad he had to come get her because Im scared. The funny thing is, my parents and the few people who know, constantly tell me, you need to leave her, even her dad told me that. No one understands that I love her, and I too vowed to always take care of her, when she's good, we're great when she's bad we fight quietly away from the baby, when I read your article I thought wow, there's a man who gets it. But I know if I leave her she will fall off the deep end, if I stay with her and support her, am I the stupid one for not finding someonebetter? or do I stick it out and know that this is something we have to deal with forever, I drew my cards, deal with it kinda thing.  I'm lost right now and want out for mine and our baby sake. Even though I love her I'm not sure if it's worth it, everything you said is how our marriage has been and how I feel about doctors now is exactly what you said, I was the bad guy by trying to get her help, I was the bad guy by being strict and telling her to listen to the docs. I really enjoyed your article, thank you.

update: My wife ended her life on January 13 2016. Gunshot to the head in our car while I was asleep. I found her 530am. No need for sympathy. I'm past all that and I'm able to talk about it now. My daughter and I are doing well, she's 3 now.  My wife was not a bad person. She just wasn't able to go on with life. I have no explanation of why she did it, she did not leave me a note. But I know she loved us very much and I know that myself or my daughter was not to blame. She had her own demons. She gave me my daughter and I'm thankful for that.

***

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Melody

I have been seeing someone with Bipolar disorder for the last three and a half years. It is a constant struggle and he has been hospitalized about a dozen times since shortly after we started dating. A story like yours gives me hope for the future. However, I am still scared as he often cannot shake the memories he has formed while manic and still believes those occurrences to be true, so it is a constant struggle to help him believe that those things did not really happen and are all in his head. Thank you a million times over. I think about future everyday and wonder if we can have a happy, healthy, successful relationship.
update: Sadly, my relationship ended but it was best for the both of us.

 

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Carolyn

My story is very similar to Giulia's... except that because of my bipolar diagnosis & history in my family, I decided not to have kids.  My young marriage didn't survive my relapse. The interview and your article gave me a new lens through which to understand the struggles my now-ex-husband faced and to have more empathy for him. Your story is important and powerful.  It will help many people.
I'm very lucky that I have family to support me, I found a medication mix that's working & I'm now remarried. I'm now a group leader for Recovery International, a mental health self help CBT program. I still wait and wonder when the shoe is going to drop again.  I go to sleep each night knowing I'm doing all I can to take care of myself.  The rest is up to my body which is outside my control.  The solace I have is that every time I have gotten sick, I have also eventually gotten well.  As bad as it gets, there are no hopeless cases.
"For more information about Recovery International visit Www.RecoveryInternational.org"
Recovery International (RI for short) is a non-profit organization dedicated to providing coping tools and peer support cognitive behavioral training.  It is a valuable community resource that more people should know about. Outside of professional care & medication, going to RI meetings is the best thing I have ever done for my mental health.

 

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Silas and Natalie

Free: 1 unbelievable marriage story. Original owners, seats 4. 18yrs old, a bit worn but runs better than new. A few Dents from 5 collisions with Psychosis. Some minor Paint scratches from 10 mental hospital detours. Scratches can be buffed out, dents add character. Aftermarket Lord & Son seatbelts work great. Insured by JC Fidelity Trust. Safest rig, on and off the road. Not mint condition but Bluebook says priceless. Call to schedule a test drive. Sincerely, feel free to file this away or respond if you feel lead. We have a story, we are not shy, but we are also not proud of it either. It's God's story in our lives.

Three years into our marriage Bipolar-Schizoaffective moved in. It's a mental illness that will bring new meaning to the phrase "they're just not the same person I married". It will make you question your salvation when you hear voices in your head. It will drive you to beg people to kill you. It will convince a young mother that caring for her babies means getting herself as far away from them as humanly possible. And then one day you'll get better. But better is different now: shame, guilt, anger at God, anger at self, & self loathing. The nightmares are the first thing you think of every morning, until one day it's the second thing. Eventually you'll see that you've got another chance at life, and take it. Then one day after a few years you'll wake up and see that it's back.

15 years, 10 mental hospital commitments, 5 psychotic decompensations, 2 beautiful children, and 1 suicide attempt later; we are still here, still married, and still believe that no matter what we are going through... God is good.

***

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Louie

Just wanted to say from another guy, who's been dealing with this for about a year, and is about to share the same fate as my wife, a complete and utter mental breakdown, it was refreshing to know I'm not the only one who has stands by their spouses side.

But most importantly, I'm suddenly and refreshingly not feeling as lonely or isolated as I was prior to reading your article.

***

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Kelsey

I am a 26 year old New Yorker. Also very type A and driven with a clear vision for my life. Similar to Giulia, I have always wanted to be a mother. Though I am not yet, I hope to be sometime soon. A year ago, about 3 months prior to my wedding I had a massive panic attack that spurred an onset of OCD. Since, I have been learning to face down that demon on a daily basis. While my battle certainly pales in comparison to yours, I still take much hope and comfort in your story. When it began, my biggest fear was that my husband would not be up for the challenge. But every day, he wakes up and faces it down with me. It is bringing me to tears to even write that. I am so grateful that someone is sharing the positive side of mental illness. Giving hope. Changing stigmas for the better. ***

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About Reader Stories

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In November, 2012, I published Out of the Darkness in the New York Times. I received roughly 200 email responses, almost all of which shared the reader's experience with mental illness, whether it be their own struggle, or that of a family member. In January 2015, I published My Lovely Wife in the Psych Ward in Pacific Standard, which "went viral." I received over a thousand email responses, and continue to get emails, a full 18 months after the story was first published. It was this massive response that got me thinking that I should make a place dedicated to sharing these stories.

If you want to share your own story of mental illness, you can submit them through the contact page or else by emailing me at mark@marklukach.com. I will use only first names in the stories that are published here, and if you prefer, you can keep your story anonymous. I will not be putting your email address anywhere on the post.

In spring 2017, Harper Wave will publish my memoir that explores the issues from my past writing in more depth. If you're interested, you can sign up to be on my email list to receive updates on the progress of the book.

Thank you for sharing your story, and good luck in your path forward.