My dear, sweet broken brain

How I got the treatment I needed for depression

It seems my fellow bloggers have coaxed me out from behind the woodwork.

I’ve often heard that the late teens and twenties are quite the formative years. I wouldn’t know. From the ages of 17 – 29 I was sick with depression. A chronic depression that was at times suicidal. Once I got the treatment I needed I never felt much shame or made any kind of an effort to stay in the closet with it because like with infertility, I felt I had done nothing wrong. After including it in my medical history at a doctor’s appointment about fifteen years ago I was told by one of the office assistants in a concerned tone that “(I) you shouldn’t let people know that.” “Why not?” I challenged. Not surprisingly she had no answer.

Truth be told I hadn’t thought about writing about depression. Been a little busy lately grieving the loss of my children and all. Upon recovering in my late twenties, I began my race to make up for what I felt were lost years, and in the process had little time for advocacy. Which slid into a complacency of sorts. Although the climate has become a bit more informed since the days a decade and half ago when crazy rebel that I am I started including depression in my medical history, I figured the heart wrenching tragic death of Robin Williams would become just another situation where people would judge and even the best meaning people would again not get it, and thus the stigma would continue. Instead, I was wowed by post after post acknowledging depression, all of them thoughtful, accurate and substantive, and some downright bold and transparent. Thank you, Silent Sorority, RIP The Life I Knew, Ever Upward, Real Life and Thereafter, and all others who I’ve seen post about depression in the past.

In her latest post on Silent Sorority, Pamela astutely points out during her recovery from surgery to remove basal cell cancer from her leg:

“I’ve had more than usual time to reflect on society’s response to certain topics.

Skin cancer – Socially acceptable

Mental Health Issues: Socially unacceptable

Infertility: Socially unacceptable

As scary as it is to get a skin cancer diagnosis, I can now say definitively it’s easier to have a socially acceptable condition than a socially unacceptable one”.

Yeah, I’ll say, having both in the socially unacceptable department as threads that are part of the fabric that is me. It’s no wonder I feel like a bit of a perpetual misfit. Mental Illness robs you of yourself, infertility robs you of your offspring and of the future of which you dreamed. That’s a lot. It got me thinking, what else do they share?

 

Mental Illness: Could happen to anyone

Infertility: Could happen to anyone

 

Mental Illness: Cannot be fixed by willpower alone

Infertility: Cannot be fixed by willpower alone

 

Mental Illness: Not my fault

Infertility: Not my fault

 

I’m choosing to highlight the biochemical aspect of my story, since in my opinion the biochemical aspect of mental illness is a critical component that is also one of the least understood. Plus if I tell my whole story it’ll read like War and Peace – The Mental Illness Version, and I already burden my followers with War and Peace – The Infertile Version. Enough’s enough. Although I’m pleased the stigma is less than it used to be, I see the media coverage of Mr. William’s death, like most other news items related to mental illness, heading straight to the contemplation of all of the subsidiary topics while failing to get to the real point. Which is that people can be born with or develop brains, that, just like other organs, are broken. And that their less than optimal function can have very damaging ramifications. Furthermore, the victims of such situations, without the right treatment, have very little control over the fixing of it.

It all started…..well I don’t REALLY know where it all started, but I’m going to start at my senior year in high school when I was seventeen and got the mono virus. The flu like symptoms eventually went away but even seven and eight months later I was not better as I was incredibly fatigued and depressed, a shadow of my former self really. (I would later learn that the symptoms of one of my imbalances (pyrrole disorder) are called forth/exacerbated by other depleting life situations). Depression wasn’t understood to be a physical issue back then.  My mom kept taking me to the doctor and Einsteins that they were they kept retesting me for the mono virus and definitively reporting that, since the virus had officially left my body, I should be fine. How quaint. Leaving stones unturned clearly their forte, it was probably a good thing these people weren’t homicide detectives, or there’d have been a lot of murderers running loose in the vicinity of Groton Massachusetts.

So, off to college I went, my undiagnosed life threatening illness tagging right along with me. Swell. I improved somewhat, as I ended up liking college except for the academic part, and had been handed down the idea that I on my own could make myself “feel better”. Little control freak that I am I of course ate this right up. However things ended up sliding back downhill and in my late twenties I again found myself very sick, with this time no mono to blame.

Therapy hadn’t worked, a typical sign that the roots of one’s depression are biochemical. Even worse, therapists looked down on me and treated me as though I was in control of this, compounding the problem as part of me felt like a failure for not making any “progress”. Unfortunately, back in the nineties depression was still mistakenly considered a personal flaw. But does talking about a broken leg, or a broken pancreas for that matter facilitate its healing? No, my past therapeutic geniuses. I do not believe that it does.  I’m sure it didn’t help that we had just come from the hard work equals everything, will power conquers all worshiping eighties.  The sheer number of “If you can dream it, you can do it” posters that littered my childhood classrooms could likely wallpaper my whole house.

Although at this point I had been diagnosed with depression by a therapist, I had always sensed there was something physically wrong with me that was causing it. Because of this, I had decided to seek help at the Pfeiffer Health Research Institute, a place in Illinois I had heard about from my aunt. In short, they analyze blood, hair, and urine samples (they don’t do hair anymore), hopefully find any excesses and deficiencies, and based on their large body of research, create a nutrient therapy program taylor made to treat your specific imbalances.

In the meantime I had refused drug therapy, even though in the opinion of one therapist I “really needed to be on something”. Sounds promising, but I was bothered by the fact that if these therapists didn’t know what was wrong with me then how in the heck were they going to fix it? It seemed to me to be common sense that one can’t fix what one doesn’t know. Furthermore, the voice I hear from time to time that I often reference in other posts chimed in loud and clear: “Don’t do it S. They are going to give you the wrong drug, and they are going to fucking kill you.” I knew at the time I was dangling from such a thin rope that there was no margin for error, so I did my best to hang on. I would later find out that patients with one of my imbalances (high histamine levels) typically do very poorly on drug therapy, and are often made worse by it.

MY DIAGNOSIS (and a laymen’s explanation of them) are as follows:

Hypoglycemia (low blood sugar) – as goes one’s blood sugar, so goes one’s moods. Fortunately, this problem is easy to rectify with dietary changes.

High histamine (under methylation) – Histamine is a brain neurotransmitter that has a major influence on human behavior. This genetically transmitted condition is associated with a deficiency of methyl groups in the body which results in low levels of serotonin and other “feel good” neurotransmitters. The most common characteristics in addition to depression are obsessive compulsive tendencies coupled with a high energy drive. Untreated individuals in this group are at a great risk for committing suicide. It is suspected Marilyn Monroe had this imbalance.

Pyrrole Disorder (in me resulted in a major zinc deficiency and a copper zinc imbalance)

Pyrroles are a normal by-product of hemoglobin synthesis. They grab trace amounts of zinc and B6 as they make their way out of the body and are excreted through the urine. Those of us (such as yours truly) who make an unusually large amount of pyrroles in the process of manufacturing red blood cells become zinc and B6 deficient, which brings on a whole host of problems. Though usually extremely creative, in addition to depression these individuals untreated can suffer from fatigue, nervous exhaustion, tremors, palpitations, and insomnia. It is suspected that Charles Darwin and Emily Dickinson had this imbalance.

We all have minor differences as each person’s biochemistry is unique. However some of us have more marked, more outside of the range of normal imbalances than others. I’ve always speculated if my brain were to be photographed next to a few other brains without these imbalances it would be a clear “one of these things is not like the others” situation.

After I was on my program for a few months, life was so much easier. Although individual cases vary, in my personal case I did not need meds or counseling of any kind.  I realized, among other things, that I had been too nice to people since I thought everyone in life generally felt as horrible as me. And most people in my life at the time had taken advantage of that. However, I was able to rebuild and go on to have a successful marriage and businesses, and being treated with this program allowed me to go through almost four years of infertility with relatively little depression.

Unfortunately, the year before we started trying to conceive, other stressful life events exacerbated the characteristics of my pyrrole disorder, and anxiety started to rear its ugly head. So there I was, unbeknownst to myself embarking on a life crisis in possession of a serious biochemical predisposition for anxiety and PTSD.

 

I explained my symptoms to a doctor at Pfeiffer during a follow up visit.

“When my stress level goes above, say a three, on a scale of one to ten, and it might even be good stress, my body completely freaks out as though I’m going to die. My heart pounds, I shake, I can’t think straight. It’s like my body doesn’t match my brain. I don’t know what’s happening.”

DR: That is exactly what’s happening. I see this in pyrroluric patients all of the time. Your brain doesn’t have the chemistry for average stressful situations so it goes right into fight or flight.

Sarah: So in other words, my brain is missing numbers 4 – 9 on the stress handling dial?

DR: Yes, that’s correct. So when you stress at, say, a level 6, your brain reads that as fight or flight and sends your body fight or flight signals.

Sarah: But, I’ve been taking all of my zinc and my b vitamins, and over all I’m much better….

DR: Yes, but the vitamins initially go to your blood. And what’s in your blood is not necessarily what’s in your brain.

Sarah: Shit. That’s tragically fascinating.

 

It was during this conversation I was hit with the realization that I will be in this fencing match, this irreconciliation between brain and body, one way or another for the rest of my life. The anxiety and panic attacks hold me back and I’m still trying to figure out what to do about it. The supplements they gave me haven’t worked and I’m considering turning (oh so carefully) to meds (which can work in conjunction with a nutrient therapy program). Many pyrrole disorder side effects subside when stress subsides, but the ebbing of stress is yet another privilege taken by infertility. So on goes the battle to get my body to match my soul.

Going through life with a broken brain is not easy. I suffered a greater degree of mental debilitation from fertility drugs than my fellow infertiles. Likely because with me, the already hugely mind altering fertility meds went on top of an already unsteady brain foundation. The “performance nerves” my fellow band members describe are infinitely more benign than the extremes I experience. Even when treated, when going through life with a broken brain most things are just simply harder.

 

Sarah: They don’t really “get” the human brain yet, I mean, isn’t understanding the human brain the last under explored scientific/medical frontier?

DR: (eyes light up) Yes, absolutely. In my estimation it’ll take at least another one hundred years of scientific research before we begin to really get there.

 

I’ll never forget the first time my husband saw a huge grocery bag full of my vitamins. My nutrient therapy program is the only thing that could rival in volume the drug and needle stash of an infertile patient.

Julio: (Shocked) What is that?

Sarah: Everything it takes to keep me sane, my love.

Julio: (Strange, disbelieving look)

Sarah: Well. It’s a dirty job but SOMEBODY’S got to do it.

 

Taking these on top of one involved infertility drug protocol after another was really super nifty.

I pay for all vitamins and visits to the Pfeiffer Health Research Institute out of pocket.  When I fought my health insurance company’s refusal to cover it initially, my appeal was denied as they claimed that this treatment that saved my life “was not medically necessary”.

I often think about what I’d have been without this disease. How I would have done better in school and been more successful in my career, had more fun in my youth. My short term memory wouldn’t be so shoddy. I’d be more confident and have better self-esteem. Things would roll off my back more easily. Maybe I wouldn’t have to work so hard to feel like enough. I wonder what I’d have done with the time, brain space, and money I spend taking care of myself, setting myself up just so I get to “be”.

But then I wonder too if without it I’d be so brave, persistent, determined and self-reliant. When coming from such a weak deficient vulnerable place one’s innate qualities have no choice but to immerge as exaggerated compensatory coping strategies. And I have to say, in an emergency, my fiber optic brain network is quite useful. My ability to vault quickly into fight or flight got me out of a carbon monoxide scare in my home extremely quickly in the aftermath of hurricane Sandy. I can’t help but wonder what would have become of my more “normal” fellow humans in that situation as they would have been stuck with their slower dial up systems.

I don’t think I’ll ever really fathom the fact that I don’t control this. I do know I have learned to be a lot nicer to myself, a necessary compensation for that which medicine is not yet able to solve. I actually used to try and modify all of the things people don’t seem to like about my dear, sweet (and slightly obnoxious) brain. Things that I believe are at least in part the result of my unbalanced brain chemistry. I’m not relaxed enough, I’m too neurotic, I need to calm down, I’m too intense, too analytical, I think too much. I’m too hyper vigilant, too hyper period. Too dramatic, too sensitive. Yes, I’ve heard it all and then some. Unless one of these characteristics runs the risk of unnecessarily hurting someone, I no longer make an effort to curtail them. I accept who and what I am, and although I try and cultivate things to bring a bit of balance to the situation (the ability to listen, accept imperfections, yield, slow down, and pause), I no longer try and feign the invisibility of my more pointed characteristics.  All I desire is to be a functional me.

I now think of my brain as my own personal signature cocktail. Signature cocktails are off of the run of the mill menu, take a little more work and a willingness to try something different, and are often very very satisfying.

This unexpected merging of my mental illness and infertility world got me thinking of how one affected the other. It’s ironic I’ve had to work so hard to try to get to “normal” my whole life only to reach middle age child free not by choice and feel as though I will be forever different. My success with nutrient therapy as a treatment for mental illness resulted in me having too deep a faith in holistic modalities which ended up yielding nothing as a treatment for infertility. On the other hand, in having a scientific explanation for my mental illness I may have struggled less with the notion that infertility isn’t my fault. My history of mental illness is one of the main reasons I stopped fertility treatments. I had worked too hard for my life and was not willing to flush myself on any level down the toilet. Twelve years in the toilet was more than enough. There are many victims of mental illness who do not come out of it with the privilege of being alive. I don’t forget this and I think in this sense my past drives my present. It’s possible I value general health, wellbeing, and the enjoyment of life – all of the things infertility takes a giant crap on while threatening to obliterate altogether – differently than someone who hasn’t had to live without them. Perhaps I have a respect for self-preservation that only one who had to deal with their own mortality as a teenager could harness.

It’s easier to blame and get angry than it is to say we don’t know. Robin Williams likely had a problem we human beings are not yet capable of solving. It’s easier to lash out at Robin Williams than to face that this was not totally within his realm of control and, that it’s more likely than not any one of us in his position would have done the same thing. Blaming the victim really is a lot easier, isn’t it? And a very natural thing to do when we don’t have compassion for ourselves. But, it’s not enough to fill the next one hundred years it will take in my doctor’s estimation for science and medicine to unlock the mysteries and complexities of the human brain. In a world where we have so many answers and solutions, it’s still important to create space and capacity to deal with those things for which we don’t. At this point and time, mental illness has the ability to take down the best of us. Surviving and thriving does not make me any better than those who don’t. I’d venture to say one wouldn’t find a lack of persistence, grit, or soulfulness in those who take their own lives. It boils down to the fact that I received the help I needed in time. Barely, but barely was enough. Robin Williams didn’t. I’m lucky. He wasn’t.

I may not live to see the scientific breakthroughs that make it possible for everyone who wants children to have them, or for people to be their true selves and not suffer from mental illness anymore. But I know I will live to see society as a whole become more yielding and compassionate towards that which we don’t control, and that for which we don’t yet have all the answers. That so many were willing to write about something that has also heavily impacted my life touched me deeply. Silent Sorority, Ever Upward, RIP The Life I Knew, Real Life and Thereafter and to all others who have posted compassionately on this issue past and present – good job everybody.

For more information on the Pfeiffer Health Research Institute, click here: www.hriptc.org/content/about.php.