Saturday, November 21, 2015

It is What it Is

This particular post has been brewing in my head for a long time now.
I've not been sure how to title it, how to share it and whether it would be detrimental to my friends, family and even to my career to "put it out there".

Frankly though, the older I get the less I care what other people think of me.
I care more about my actions, how I show love to others and being the best possible me I can be. I have less patience for people who are close minded and critical and if they're going to be toxic, I'm just going to move along and "pay them no mind".

The older I grow the more I think in my head a wonderful phrase my cousin Eric uses: "No Fucks Were Given".  (Side note: Eric, if you ever see this, you should know you are my hero. Your candidness, intelligence, fabulous sense of humor and ability to call it as you see it are beautiful qualities I aspire to emulate.)

This post is about removing stigma. This post is about how I have overcome shame. This post is about the pain caused by those those who judge or unknowingly hurt me from a place of ignorance.

Here's the story for you:

In late 2013/early 2014 I began to feel very sick. I lost a lot of weight. It was clear to people around me something was really wrong. I was struggling to keep up in the face of a really busy time at work (and yet I still managed to close a HUGE deal at work). 
I eventually became so sick I had to go to the hospital by ambulance. I was hospitalized and diagnosed with cancer and placed on life saving medication. 

I was afraid to tell my company - specifically my boss and colleagues and friends. I made up a lie and told my boss I'd had a heart scare related to my blood pressure and it sounded plausible enough to explain my hospitalization.

Also, I was a bit in denial. I couldn't process the diagnosis and sometimes it felt..unreal. This couldn't be happening. I did tell a few very close friends (and I apologize in advance if you weren't one of them...it was distressing to share my news with even close family. Many of them still don't know.)

My job provides our medical insurance and time away from work would put us in (greater) financial distress. I didn't want to be assigned fewer accounts or provide my boss a reason to fire me. I didn't want anyone to see my weakness. I decided to just "gut it out".  
My family was shell-shocked and afraid for my survival and it damaged us all. It changed our entire family dynamic. 

Through it all, I hid the twice weekly in-clinic treatments with bogus appointments on my work calendar so my boss wouldn't know. It took more than a year for me to go in to a sort of remission and grow stronger. It took major health changes - diet changes, more self care like yoga and meditation, really dedicating myself to get enough rest. 
These changes also impacted my family. The more I took time to heal, the less was doing my share of "being with" my family and doing the normal things it takes to run a busy household with kids.

Also, I lost the ability to do things I'd always loved to do. For a very long time I was literally unable to read. (I had always been a voracious reader - a huge book lover.) I would stare at the walls in pain and couldn't even escape into NetFlix or a book.

Moreover, the (costly, but necessary) medications are not something I can live without for the foreseeable future if I want to hope to remain in this tenuous remission. 

I have come to accept that I may well have to be hospitalized for treatment again someday, and while I dread this, I am determined to fight like hell to avoid it. This hangs over my head and weighs on my family's mind and each sign of a symptom - any twinge or sign - is enough to worry my kids and husband and this makes me feel horrible guilt despite the fact it is beyond my control.

I hated 2014. Hardest damn year of my life. Painful for my family in many, many ways. In November of 2014 I had major surgery unrelated to the cancer. I was in the hospital for nearly a week - and this time it wasn't in the cancer ward. (And fortunately it was at HCMC, rather than Abbott, which held the bad memories of my prior hospital stay.)

My boss was definitely unhappy with my time away from work - and this just strengthened my resolve that she and my coworkers should not know about my health. It garnered some awkward and in many cases unwelcome comments from my coworkers and that once again validated my decision to hide the cancer treatments (which were ongoing at that point).

This led to tremendous shame and stress at work. Eventually I was put on a sort of probation at work (I still think this was not due to my professional performance, but who cares) - and this was enough to finally spur me to look for a new (and better) job. 

The fresh start has been wonderful in many, many ways. Sure, I miss friends and colleagues from my old job...but the new work environment I'm in is...freeing. I feel more able to speak my mind and be honest and up-front. I'm not fearing for my job and I feel that my performance and hard work are being valued and that any medical appointments I need won't cost me my job.

I tell you all of this not because I want your sympathy. I am confessing all of this because I want to reduce the stigma. The stigma of mental illness. 
Go ahead and re-read the story above and every time you see the word cancer replace it with Bipolar II or mental illness.

Yes. In my 40s, after career success, marrying a wonderful husband and building our lovely family with these amazing kids... I almost died.

I can't explain it adequately...but there are a few songs and lyrics that I think might help.

Try listening to Sara Groves song "From this One Place

The lyrics she wrote were about her late-in-life diagnosis of an Anxiety disorder:

[ I was about to give up and that's no lie...

...from this one place I can't see very far
in this one moment I'm square in the dark
these are the things I will trust in my heart
you can see something else
something else ]

And another song she wrote sums up how Jeff has provided support for me.
It's called "Twice As Good"

And..finally the song that I heard long after it was popular, but that really helped spur me to write this post is by Mary Lambert. You've probably heard "Secrets" before..but her FIRST line in this song were the confessional words I need everyone to hear. 

I can just slightly adjust the lyrics and it fits me perfectly when I sing the song (rocking out in the privacy of my car!):

[ I've got bi-polar disorder
My shit's not in order
I think I'm overweight
I'm always late
I've got too many things to say
I rock mom jeans, bee earrings
Extrapolate my feelings
My family is dysfunctional
But we have a good time teasing each other

[Pre-Chorus:]
They tell us from the time we're young
To hide the things that we don't like about ourselves
Inside ourselves
I know I'm not the only one who spent so long attempting to be someone else
Well I'm over it

[Chorus:]

I don't care if the world knows what my secrets are, secrets are ]

That one fits pretty damn well. 
And it's comforting to see her success. It's comforting each time I read my BP magazine (yes, there is a magazine that gets mailed to my home monthly - and they have a website) and read about other people just.like.me. 
People diagnosed late in life. Or not. People who nearly destroyed their lives. Or not. People who have been "successful" in spite of major mental illness. Or not.

I say "successful" because even if earning an income and not losing my family are considered "success" - that doesn't mean that other people with Bipolar are any less successful even if they're just putting one foot in front of the other and surviving. 




I told my story (above) the way I did not to minimize cancer, but to help point out the difference between how people treat those diagnosed with the two illnesses. 
I have two people near and dear to me fighting for their lives at the moment and going through chemo and soon radiation and it SUCKS. It is probably the worst season of their lives to-date. From all I can see from the outside it looks like hell on earth. 

However, when they were diagnosed they received sympathy. People send cards and flowers. People embrace them. People make meals for them and drive them to medical appointments. Sympathy, empathy, understanding...not stigma, avoidance and even doubt.

My careful balance to "get better" has involved DBT (google it), medication carefully tailored to my needs - and one of them at the maximum dosage because my particular form of bipolar is the most dangerous - because in the depths of a mixed state (google that, too) I am more likely than others to very skillfully commit suicide. 
My recovery has included exercise, a routine, getting adequate sleep and mediation/spiritual focus. My year of DBT is completed, and I use the skills constantly. I'm in a good place - good enough to not really need frequent therapy. I have to be mindful that this could all change at any moment. For now, my 5 pronged approach is keeping me in "remission". 
I can take care of others again. I can be a supportive friend. I can socialize and make friends. I can honestly present a happy face to others. I can be a loving mother and wife.

I am tentatively going back to reading and quilting again. At first I could only read books in paper (no Kindle)..but I'm experimenting with my first kindle book this month and I'm half-way through...so I have hope.
TV doesn't usually interest me anymore..but reading and writing have come back, and frankly those capabilities are far more important to me. 

I am sometimes a better wife and mother than I used to be. 
In general however, my changes - mainly for better, but perhaps some for worse, have taken some major "getting used to" for my kids and Jeff. 
Imagine knowing someone for nearly 2 decades, or in the case of my kids - their whole lives - and then their personality changes drastically
Like I said, on the whole, they are good changes. My kids appreciate that I am a more compassionate, mellow person, don't drive aggressively like I used to and I am slower to anger.

But they are disturbed when I am friendlier with strangers - chatting in the checkout line or any other "outgoing" behavior they don't remember from "before". 
They are wary for any act that might signal hypo-mania. They are suspicious anytime I spend money (a sign of possible mania can be impulsive purchases - although this is not one of my common signs of mania). When I rush around because we are late they worry that my moving "too fast" = mania. Basically, they worry. Which is horrible because they shouldn't have to worry. 

Running has been a major (and cathartic) component of my recovery. Vigorous exercise is actually recommended for those with bipolar. It's part of one of the many DBT coping skills. 
The time that running takes away from my family is also something that they (understandably) resent to a degree, too. 
It's a solitary activity for the most part - and not one of their interests..so it appears (and often to me, feels) "selfish". 

The main reason I am finally divulging this, however, is because of something that happened to me this past week.

Jeff was traveling so I had to get Michael to Catechism and pick him up.
I haven't been to church much since I "retired" from teaching Sunday school - mainly because it's been tough to go back. And, moreover, I've been getting my spiritual needs fulfilled elsewhere (a women's Bible study, yoga, meditation, prayer while I run)..and I sometimes I also falter in my faith. 
This is in large part to the sort of dogmatic "religious" (rather than Christian - notice I'm discerning between the two) reaction to mental health. 

I know a lot of people (and frankly, to a large degree I used to be one of them) that are skeptical of mental health diagnoses. 
Thoughts like:
Is it real? C'mon, isn't depression just an excuse for laziness? They don't look sick. Sure, he blows up sometimes - but he's got a good/stressful job and so what if he drinks too much. Or...some people are JUST EVIL. That's why they do/did that.

This week a man I know very well from my church saw me waiting for Michael to finish up in Catechism and approached me. He said: "Long time no see!" (Fair comment. I've been avoiding our church.) We chatted for a while on a variety of topics. 
Let me stress first that I really LIKE this person. He's an older man who helped me very much in the past with a mission project. He is generous and a humble servant of God. He is a faithful and longtime member of our church.

AND, early in our conversation, seemingly out of nowhere he shook his head and rolled his eyes and said: 

"I mean, c'mon, this Bipolar and Schizophrenia - that's just the devil. You know what we (this country) need? A REVIVAL. Bipolar and Schizophrenia - those are entirely of the devil."

I was stunned. So much so that I wonder if he noticed that I stopped responding in our conversation for a while. (He kept talking, and eventually we got to a topic I could respond to...but my brain was still reeling from the shock.)

I walked away and thought to myself: My very Christian and godly Psychiatrist with a Doctorate in Chemistry, Psychiatry and Pharmacology would beg to differ. My Christian DBT instructor and therapists would also disagree strongly.

If you look up the definition of Cancer it reads: Cancer is an abnormal growth of cells which tend to proliferate in an uncontrolled way and, in some cases, metastasize (spread).

If you look up the definition of Bipolar it reads: Bipolar is a treatable illness marked by extreme changes in mood, thought, energy and behavior. Bipolar disorder is also knows as manic depression because a person's mood can alternate between the "poles"--mania (highs) and depression (lows). The change in mood can last for hours, days, weeks or months. There is no single cause. Genetics, neuro/biochemical changes and stress can play all play a role.

In my case there was certainly a genetic and stress component. And, I can see, in hindsight that I had undiagnosed cyclothymia. (Apparently people with cyclothymia can easily be "tipped" into full-blown Bipolar by a stressful life event. This came as news to me - but is apparently very common according to the doctors I met in the hospital.)

I can also tell you that like many women I have "rapid cycling" Bipolar II and mixed states. This is challenging, and yet helpful in the sense that I can often employ DBT skills to "balance" things out before the pendulum swings too far to one extreme or another - IF I can observe (or in DBT speak: "be mindful") what I am experiencing and employ a counter strategy.

If it sounds like hard work - that's because it is. If it sounds like a rough thing for my family to experience - to live with someone with an entirely different personality and new behaviors - that's because it is.

If it sounds like I'm shamed by this...I can honestly say that is no longer the case. Like the song says: "Well, I'm over it. I don't care if the world knows what my secrets are, secrets are..."

This is an illness. Like cancer. Or diabetes. It is the hand I was dealt and I didn't ask for it - but it's up to me to live with it. Like it or not, it is what it is.

1 comment:

Anonymous said...

Great post honey! We love you. Jeff