Last week, when we asked for your stories on social issues that get less coverage than they should, one of the topics we wanted your input on was mental health. Health care for those with mental disorders is a maze of physicians, pharmaceuticals and differing diagnoses that all too often fail to bring the sufferer any real relief.
But not only does mental health affect those with the disorder, but it affects those around them profoundly as well. One of our readers/show viewers (who asked to remain anonymous) sent us her story:
I grew up in a household with mental illness. My mother was diagnosed manic depressive paranoid schizophrenic when I was a young child. I remember the first time when she had a “break down” at the ripe old age of 27. I remember her being very calm when she came home from the hospital. My mother is not one to be told what to do. She does what she wants…the medicine they would give her would make her feel “not in control.” At least that is the excuse I’ve always been given. Things would be complete chaos until something landed her in the hospital, then she would come home totally serene. By the time I was about 10, I had seen her stab herself, down a bottle of pills, break windows while in a manic mood, and drink excessively. To everyone else, she would say I was a wonderful angel, while telling me to my face I was a failure, a brat, and to get out of her sight.
Over the years, I got used to dealing with the multiple personalities and paranoia. I never knew who was going to be my “mom” when I got home. I always walked on eggshells and any little thing I did I was usually grounded. She also had this spiritual side to her. While she grew up Catholic, she also believed in reading tea leaves and cards. She told predicted a few thins growing up that turned out to be true later on in my life. Things would constantly go missing—her glasses, her keys. Half of me wondered if she was that forgetful, the other half now wonders if anything supernatural was happening. Were the voices she heard really her delusion or were they from the other side? Experiencing what I have in the paranormal world makes me wonder now. Of course, some of her would believe in this, the other would call it hogwash.
An incident happened when I was 18 where my dad had to go find work in another state and leave us behind. I was in college getting ready to move when I could tell my mom was having another one of her “episodes.” She wouldn’t sleep…I think she said it had been 2 weeks since she slept. I kept waking up in the middle of the night with her in my room telling me things like “I just let your dog go” and “Why do you want to try and kill me?” My dog was part sled dog and ran really fast. As soon as he would get out of the yard or the house, he would take off. She had let him out the front door and I had to go chase him down blocks away…in the middle of the night! The other reference was about a true crime novel I was reading and I had told my boyfriend about it over the phone. She must have heard our conversation and twisted it thinking it was about her. Paranoid people think we talk about them, and it was far from the truth. Well on this particular night, I brought the dog back into the house and tried to go back to bed. A few other things happened so I decided to call my aunt, my mom’s sister. I could no longer do this myself and needed some “intervention.” My aunt talked to her for a while and things seemed to calm down.
I woke up to a sound of what I thought was my mom vomiting. I distinctly remember closing my door but it was now open. It was a little early for me to get up, but I figured if my mom wasn’t feeling well, I’d just get up early. I remember calling out to her and asking if she was ok. She had said she hadn’t been feeling good since she hadn’t slept, etc. As I got up, I noticed she wasn’t in the bathroom, located in the hall right outside my door, she was standing outside of my doorway, which I thought was strange. As I approached her, my eyes adjusted to the light in the hallway and I saw her standing there with something in her hand and blood gushing out of her throat. It’s all a flash of images in my head over 20 years later, most of which I try to forget, but sometimes they come back to light and I start to shake. She said, “I let the air out. I had to let the air out!” I said, “Oh you really did it this time, didn’t you?” I managed to get the knife out of her hand and throw it into my room. I turned around and called 911 and she disappeared. They told me to put something on the wound to keep it from bleeding. As I was on the phone, she walked back in the house from the backyard and was soaking wet. She had jumped into the pool (I still don’t know why she did that). I grabbed a towel from the chair and put it on my mom’s throat and I guess she thought I was trying to harm her because she put her hands around my throat and started choking me. It was weird because she looked at me like she didn’t know who I was.
The ambulance showed up, the police showed up…the house smelled of blood I was interrogated by 3 EMT’s an policemen about what happened. They took my mom to the hospital, then to the psychiatric part of the hospital, where she was for about 2 weeks. I had to call my family to let them know what happened and I moved out that day to live with my boyfriend and his parents. I wanted to go to school later that day to get my mind off of what had happened, but I just couldn’t. I sat in class with the images in my head. Every little speck of anything on the ground looked like blood to me. Can I say that it’s unfair to have to go through that at 18? It’s better to go through it at that age than earlier, but still….no one should have to see their mom with a knife to her throat ripping apart her flesh. I cry everytime I even think about it.
The aftermath was…well, as an aftermath should be…I told my mom I wasn’t coming back home, not after that. She called me ungrateful. My dad sent me to a psychologist for a while, at my request. The issues run a lot deeper than just “my mom is crazy.”
I try not to spend too much time with her unfortunately. She had a few episodes after that where she landed back in the hospital. I assisted her in selling her house and was even told by the realtor that she should have a conservator. The pain is too great for me to have much contact. I had too many issues later on that my doctor advised me not to have contact with her.
The pain that is caused by this disease is far greater than what people normally talk about. It affects entire families, entire communities (in the case of the California policeman who killed a mentally ill man), and financially, we aren’t able to take care of them. Jails are not the place for these people. Many only need to take medications on a daily basis. Some do need to be locked up, but something should be done. Many mentally ill people take to the streets and those who are already on the street may become mentally ill from being there.
In the old days, the idea to lock up mentally ill (or mentally challenged) people was, in my opinion, somewhat of an over exaggerated, yet necessary, solution. They should be taken care of as the physically ill are taken care of. Unfortunately, they don’t know any better to get help. I hope that anyone reading this thinks twice about that mentally ill person you encounter. That person has a family…somewhere that cares about them. Deep down I still care, but I cover up my emotions with jokes and disregard. It hurts too much. I am a stronger person for having gone through what I have, but I would not wish it on anyone.
As I read this story, I realized that I had to contribute from my own experience – to get my skin in the game. Very often, when we are no longer anonymous, we self censor to avoid hurting people’s feelings. But this is a topic where I have personal involvement. It’s not fair to ask someone to share their story without having “skin in the game” myself.
For the better part of fifteen years, I was in a relationship with someone who suffers from bipolar disorder. It wasn’t diagnosed until after we were together, and it was my choice to stay in the relationship. I can tell you from first hand experience that it changes you.
My ex-wife and I moved in together in the spring of 1993. It was fairly typical for a new couple, getting used to each other’s quirks. We had met in the theater, and most everyone I know in theater has a bit of “eccentricity” to them. Nothing major, but they’re usually more free about letting their personalities come out.
Before she was diagnosed, it was hard to put things together. The first clue that three was something going on was when she took a job selling cars. She started, and got real excited about it. In fact for the first month or two she was there, she was the top sales person. She was full of energy, and making good money.
Then, things started to slip. Her sales were dropping off. Her mood was less buoyant. She felt less motivated. As the weeks wore on, this got worse. She seemed to be picking fights, her mood depressed and irascible at times. She lost the job – tried taking a job at a department store instead, thinking it was just the car business. What we didn’t realize was that it wasn’t the business. It was the downside of her mood cycle, and that she was a slow cycler – she could stay at the extremes of moods for two to three weeks, then slowly slip toward the other extreme, almost impercrptibly. Not knowing what I was seeing, I was confused and frustrated.
It wasn’t for a few months – and after an extremely tough stretch – that she finally went in to see a doctor about what was going on. She was diagnosed with bipolar disorder in the latter part of 1994. Suddenly all the mood swings, the periods of intense energy, later followed by periods of just as intense lethargy all made sense. She didn’t cycle fast, but she cycled deep. Highs were high, lows were low. She tended toward the manic side, which meant she was in danger of trying riskier things, of high levels of impulsivity, and the real danger for manics: Feeling so good that they stop taking their meds.
Of course, there are lots of reasons to stop taking meds. They can make the person taking them feel slow, lethargic, like their mind is slogging through thick mud. In some cases, they cause rapid weight gain. When my ex-wife and I met, she was about 165 pounds. After about 5 years of taking lithium, she had grown to 435 pounds. The meds affected her stomach, to the point that we couldn’t take a leisurely drive without knowing where the next restroom within 10 minutes was. The meds were supposed to help her mood. Instead, they depressed her further by essentially trapping her in a body she couldn’t control and hated looking at.
It took about five years to find a team of doctors that got her behavioral cognizance therapy and the right meds that let her start to lose weight and start to take control back. During that time, I had slowly learned to become hyper-vigilant to her moods. I got to the point where I could tell, within 2 hours, if she had missed a dose of meds. Missing one dose out of three a day meant it would take 24 hours for her to be completely back in control. Missing a day’s worth of doses meant a week of rollercoastering.
Until we split, I never knew how much energy it took to be that hyper-vigilant partner, how much of me I had given up to make sure she would be ok. That’s not a martyr complex. Anyone who has dealt with the issue will affirm to you that they don’t do it to be a martyr. They do it because they care. But the toll is profound, and insidiously slow. You don’t notice it – you just feel tired. Drained. And you don’t complain because you know that they have it worse.
Our marriage ended just after my daughter’s fourth birthday. My wife had changed medications to a new cocktail about 90 days prior, and things had changed. We started arguing more. And when I asked if she had been taking her meds, she got angry and indignant. The fact of the matter was that she had. Yet she appeared to be in an increasingly manic state.
Things grew increasingly sour, but we decided to work things out. We bought a new house, and moved in December of 2006. In January, she asked for a divorce. We tried to go to couples counseling, and I expressed my concern that this was all the result of a manic episode. There are a number of signs of a manic episode. She exhibited many of them.
This blew up and she accused me if being just like the guy who blames his wife’s anger on PMS. But by this point, I’d had over 13 years of experience recognizing mania in my ex. It was confirmed when three days after the session, she called me and said “I fucking hate it when you’re right”. She hadn’t slept in three days and was entering the hospital to be treated for mania. The meds she was on had been dosed incorrectly, and for four months she had been slowly dropping below the therapeutic level, resulting in an extended and very gradually increasing manic episode.
She had been taking her meds. And I was correct in noting a manic uptrend. But it was too late at this point, and the relationship had been basically destroyed.
Since that time, she slid into alcohol and drug abuse, and sees my daughter infrequently. She’s attempted suicide multiple times. I’ve talked with her parents (who I’m very close to) many times to try to explain what it’s like, as I understand it, to be bipolar. How someone who is manic doesn’t want to take the meds because they feel like they are superhuman. They have unbounded energy. Everything is bright and beautiful. Why would they want to take something that diminishes that.
And eventually it crashes. And now, they don’t want to take the meds because in their minds, the meds are what brought them down. And if the meds make them feel lethargic or physically ill, the meds are the excuse for feeling down, not the illness.
And those who are partners with someone who has a mental disorder have to deal with it all. They are gatekeepers and safety monitors. They watch for changes in behavior, and do what they can to make sure it stays within a defined range of “normal”. And when it doesn’t you analyze – Did they take their meds? Are they just tired? When was the last mood swing?
And it takes its toll on others. My daughter has seen her mother four times in the last year, the last time almost three months ago. For awhile, she asked about her mother, and on occasion, she says she misses her and wants to call her. We tried yesterday, but got no answer. Don’t know if it is because she wasn’t answering, her phone was off, or if she no longer has a phone. But she has had sparse contact with her mom for nearly five years, over half of her life.
At times, her mom has disappeared for months. Then I would get a call that she was going into a psych ward. Once, the call was to let me know she had nearly succeeded in killing herself and was on a respirator for days. She hasn’t been able to hold down a job for most the last 4 years. This means there’s no money for medication, no health insurance. She has to rely on what the state will give her. In many cases, if the meds are wrong, she will end up in the hospital again, they’ll try to stabilize her and see if they can fix the meds. But they’ll only hold her for three days, and then she’s out again.
And this is the situation many people with mental health issues face. They can be treated, but can’t afford the treatments. They lose the ability to medicate and end up in the psych ward at the hospital, only to be booted back out on the streets. Untreated, these conditions do not improve, and the brains tries to cope any way it can. Paranoia and fear become coping mechanisms rather than things to avoid. And these people’s lives melt slowly into despair – with those around them having to pick up the pieces. Often they do, because they care. Many times, they’re left to their own devices.
At the state level, funding for mental health services are being drastically cut. In 2/3 of the states, the finding for mental health services has been cut by 40%. According to Michael Fitzpatrick, executive director of the National Alliance on Mental Illness, “On any given day, half the people with serious mental illness in this country receive no treatment”. Half.
Like poverty, like homelessness, this issue gets very little coverage. Perhaps its because there is a stigma attached to mental illness. The association with “Crazy” still permeates discussions. But these folks didn’t make a choice to be mentally ill. When their illness causes them enough trouble that the lose their jobs, their livelihood, there’s a good chance they’ll end up on the street. And then the problem gets worse.
It’s easy to ignore the problem, pretend it doesn’t exist. Pretend that those people are suffering because of something they did, and not because they were born with a condition that affects even the most basic decisions. And it’s easy to think that it’s just them that’s affected. That we don’t need to treat them.
And it’s wrong.