Borderline Families

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I wrote a guest blog for Sandy at “A Glass Half Shattered“.

Please stop by and check out her blog.

As an advocate for change in the mental healthcare model, I hope that alternative methods will be as mainstream as the medical model that is prevalent today.

It is about choice.

Sandy has chosen the psychiatric model to help her. I support her and her decision.

Sandy describes herself as “a normal 26-year-old paralegal, wife, and mother living with borderline personality disorder”.

Sandy writes with brutal honesty about how hard it is to navigate the commonplace some days. But, rarely does a week go by that she doesn’t let her readers glimpse a snapshot of her darling kids or comment on the fact that her garden is growing. By reading her blog, we know that Sandy is struggling to present a frank and sincere account of her effort to maintain an even keel for her kids and husband.

Lately, Sandy has been writing about wearing a mask so well that people no longer know how hard the battle is for her.

When my daughter was entrenched in the psychiatric system, the most harmless encounter at the grocery store left me completely exposed and ducking for cover. Gardening next to the sidewalk became a tactical maneuver: ipod and sunglasses attached like armor, no one stopped to talk. I walked the dogs like I was a woman on a mission; I was busy and could not be interrupted. I deflected all party conversation to the other person’s interests, immediately. If my daughter was coasting, feeling good, I might be more adventurous, but when she was stuck, I closed off, marshaling my resources, and stayed close to home.

All this to avoid the simple question, “How are the kids?”

I didn’t want to tell the truth. Or lie. Or really even have to explain. That is the mark,  the stigma of “mental illness” – exactly what I want to leave in the dust.

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I wore a very heavy cloak for a long time. It got in the way of everything that I did. I tripped on it. I fell on my face. My momentum got so tangled up in it that often I was stuck in the same place for days. Some days it felt like there were extra weights sewn into the lining.

This mantle was forced on me by the psychiatric community who wanted me fixed and dependent on them. They, the minions of the industry – psychiatrists, psych ward staff, nurses and administration of residential communities, social workers, NAMI –  all added layers so carefully that I rarely noticed until I tried to walk away.

Out the double doors with the chicken-wire embedded in the windows, through the ante-room to collect my bag, and by the time I pressed the button for the elevator, I could hardly breath.

The cloak, the unbearable weight of language – all the labels and symptoms, each syllable a ton.

The “professionals”  reassured me that they would lift the hem and get me going again. With promises like “affordable extended care” and “trained professionals on staff” I could glimpse out into THEIR future.

We plodded along. My daughter was lost in the system and we, her family, felt our shoulders slumping under the burden of her “mental illness”. How to help her? Who to listen to? The advice of the professionals was like dead weight handicaps. Her life was seeping away right in front of us and we felt powerless.

Words can be too heavy. I am often asked by facebook friends if I am a member of NAMI or WRAP or any of the other organizations which, I think, keep the idea of “mental illness” alive with clever wording which, at first, makes them sound sympathetic and understanding until you analyze their mission: to keep feeding the system. Keep the people “patients” and the families scared.

This system kept my daughter hopeless and her family weighted down by the burden of “mental illness”.

The relief at dropping the cloak of “disease” has been enormous.

Like I have written before, I can now see into MY DAUGHTER’S future. From my point of view, my daughter was given back her life when we both shed the system.

I only wish it could be as easy for my daughter as it has been for me. The burden of proof of her well-being is constantly questioned. “But, your records say…”

For the rest of the family, we have always been able to close the door, walk away, take a breather. Not so for my daughter. And, even though she is SO much better and not the person who was sucked into the psychiatric system, she is burdened with the labels in all her medical records. She is an object of curiosity. The troubled girl. The child of that weighted down couple…

“She is better !” I want to take an ad out in the paper. I want to rewrite the history. I wish I had refused the cloak and hadn’t spent years trying so hard to stand upright. But, it happened and now we need to move on.

Actions speak louder than words. With time, my positive attitude and advocacy for reform in the mental healthcare will budge the hand offering the cloak out of the way.

With time, my daughter will show how she has managed to create a life despite her history.

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I fired my therapist on Wednesday. We were going along splendidly with me cringing only a couple of times over his broad generalizations of “mental illness”. His philosophy seemed to have been, “Whatever works for you, I will help you get there.”.

I walked into his office nearly nine months ago bound and determined to regain my life after a particularly difficult fall of care-taking my daughter. In hindsight, I now know that my daughter was shedding the worst of the psych meds and the withdrawal was stripping away her stability.

She endured and began rebuilding her life. I, on the other hand, had a breakdown and needed space. And, a therapist to help oversee the rebuilding of my life.

My therapist and I had a amiable relationship. He even revealed to me that his mother had Borderline Personality Disorder. He had chosen not to see her after a certain point in his adult life when he decided that a relationship with her felt abusive.

Unfortunately, I think he wanted me to follow suit with my daughter. His guidance leaned towards me keeping the distance from my daughter that I had established not long after I started seeing him and me not reassuming the care-taking duties that I had done in the past.

Day to day care-taking mostly consists of paying her bills and making sure that there is money for food in her account. Other than the financial responsibilities, I am also the one with the safety net. She calls me when she needs it. Other than that, I have learned to foster her independence. (SO THERE, to everyone who said that she couldn’t do it.)

After I read Robert Whitaker’s book, Anatomy of an Epidemic, our weekly meetings got more interesting. My therapist told me that he was very much in the camp where I was heading. He supported my budding advocacy for change in the mental healthcare system. He also admitted that he did know that there is no evidence to support the idea that “mental illness” is caused by an imbalance of brain chemistry.

I took this as a personal offense.

He read my book. He read how we were told repeatedly by the psychiatric community that the immense amounts of psych drugs they forced on my daughter were for her own good to “correct the chemical imbalance” in her brain.

“WAIT A MINUTE! YOU KNEW THIS!”  I bellowed.

This was the first significant chink in his professional armor; he withheld information. Why was he letting me carry on with this earth-shattering misconception at the helm of our lives?

We had been committed to the medical model that dictated drugs, restraints and long-term psychiatric care. At the same time I was desperately worried as my daughter had been off of all psych meds (other than benzos) for almost a year at that point and I thought that she was being irresponsible. I wanted therapy and drugs and a secure, safe environment for her. I had cried long and hard when the verdict was handed down by psychiatrist after psychiatrist. She would never live alone or off of a heavy regimen of psych drugs.

And, my therapist let me believe that was the final decree.

My daughter saved herself and although I knew that something was broken, I just didn’t yet know what it was. Something in the system, but where? Little did I know, until after I read Whitaker’s book and started networking on Facebook and blogs, that the ENTIRE psychiatric model was built on this erroneous bit of information.

My therapist and I began to have language difficulties. He used the lingo provided by the DSM-IV. The symptoms and labels and prognoses were part of his daily life. Okay, I reasoned, I had other issues that I was tackling other than my daughter. I figured that I could use his guidance in a constructive way, even if I took offense at some of his language.

That was up until two weeks ago when he told me to stop “trying to arrange the chairs on the Titanic”. Huh? He explained that he didn’t think that my daughter would ever get better and that all this searching for alternative treatments and support was like, again, “lining up the chairs on the Titanic”. I was dumbfounded. He said it twice. I couldn’t misread his meaning.

Then he asked if she had ever had electroshock therapy.

I gave him a look that shut him up and I soon left his office.

This past Wednesday, I sat down and immediately told him that this would be my last session. To say he was surprised would be to put it mildly. I felt mildly sad, a little weepy but relived when I drove away.

It dawned on me while I was talking to him that I had used him as the sounding board for only the bad things going on. I rarely told him about he good. Or, if I did, it was in passing to get the the complicated stuff – “She made it back from the photo shoot in Australia but now….”

My plan is to do the same thing on my blog that I maybe should have done with my therapist. I am going to talk about the good, too. (But, really, isn’t it his job to sort out the cruddy stuff. I can deal with the good stuff quite well on my own.)

I want to convey that my daughter is healing. The surgery has been very hard, both physically and mentally. But, each day she is getting better – on both fronts.

My daughter is funny and cute. She is ridiculously smart and wonderful with children. She is well-read and an astute reader of people and their intentions. She is absolutely unique in every way possible and even though her problems are a toothache-like distraction for me sometimes, I am in awe of her. She broke free on her own. She has done what everyone for years said wouldn’t be possible – she is making plans for the future.

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I have been taking care of my daughter after foot surgery she underwent yesterday. She’s been in a great deal of pain. This is real, tangible pain. Her foot is bandaged and her toes are bruised and swollen sticking out of the end of a heavy gauze and ace bandage. She is absolutely miserable. Last night, she couldn’t breathe, it hurt so much. Her body was trembling as waves of pain washed over her, over and over again.

Another time, not long ago, I was sitting on the edge of my daughter’s bed with my hand on her back, trying to soothe the pain away. This pain was real, too. But, there were no outward signs. Some self-inflicted bruising, some reckless tattoos that she regrets, but no bandages. Her pain was deep inside, unseen, but just as gut-wrenching as a two-hour surgery and the aftermath of anesthesia.

Last night I ran out to Walgreen’s for  a third prescription for the pain that was increasing minute by minute. Toradol is used for severe pain after surgery. The Percocet and Vistaril had absolutely no effect on on her pain. In fact, the pain seemed to be increasing until she added Toradol to the mix.

Maybe this is the legacy of years on psych meds. Neuroleptics and mood stabilizers, antidepressants and anti-anxiety meds, long ago abandoned, continue to take a toll on my daughter’s body; she no longer reacts to the “wet-blanket” of narcotics. Either her tolerance is sky high or some brain chemistry was altered by the years of chemical abuse at the hands of too many psychiatrists. She has been off of psych meds for eighteen months, but the aftereffects are still plaguing her in unexpected ways.

Last night, she resorted to the pharmaceutical smorgasbord they sent her home with. She was sleeping by mid-night and when I came at 3AM to give her more pain meds, she barely woke up. The howling pain had subsided.

For the other pain, the invisible, heartbreaking unhappiness, she writhes in her bed and looks out at me with haunted eyes and begs for relief. This too passes. Never did a pharmaceutical take this pain away. They only made it worse.

Unfortunately, she can’t hold that pain at bay any more than she couldn’t keep from feeling the bone of her toe cut and rearranged.

I stop by Facebook pages and other blogs to share what I have learned about alternative mental healthcare. I read as much as I can to learn and stay open to diverse and creative ways to help turn my daughter’s pain off.

I am like every other mom I know. My daughter has a good day and I see the world unfold for her in unexpected ways. The weight lifting off feels like a ton. On a bad day, I am like mama bear at the door protecting her with tooth and nail. And, then, there are those in-between days. On those days, it is the pain that I keep an eye on.

There is today’s obvious torment but I think the silent one that comes without warning is worse.

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