Two Sides of the Coin

G-J’s comment about sainthood on “Monitoring” started me thinking. Then Denise’s question about how we learn to live with the fear of loss during Wednesday’s “Hot Topics” show also dovetailed into my thought process.

On an earlier podcast I said that I am an “optimistic fatalist,” which sounds oxymoronic. But it’s oxymoronic only if “optimistic” and “fatalist” are viewed as concepts with only one specific meaning or application, rather than existing in many forms simultaneously.

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I am nowhere near either of the two extremes on this coin — if I thought I was, I’d be in a lot of trouble! :-) I’m in that murky middleground. Sometimes I lean one way; sometimes I lean the other way. Sometimes I lean both ways at once.

One side of my “optimistic fatalism” coin is this perceived “sainthood,” a combination of how others sometimes view me and my own spiritual underpinnings. I see what you all do and I feel humbled — and I try to learn from your examples. I’ll just say that Mother Teresa on the left represents a “halo effect” that I get sometimes. As I see it, I’m just doing my job.

The other side of the coin is Maj. T. J. “King” Kong from Dr. Strangelove or: How I Learned to Stop Worrying and Love the Bomb. Kong is riding a nuclear warhead to its inevitable conclusion, whoopin’ and hollerin’ like a rodeo cowboy. I’ll just say he’s my “background radiation.”

One side enables the other side to exist and both hold me in balance when it comes to my being a caregiver for someone whose flawed reasoning, combined with tremendous stubbornness and force of will, places me in a situation that the rational part of me finds intolerable. I feel this way particularly when I feel our safety is being compromised.

One side enables the other side to exist when I try to remedy that situation with the help of authorities — doctors, social workers, lawyers, police — only to be shoved further down the rabbit hole. Namely, being told (twice under threat) to solve the problems myself, but receiving no help whatsoever in enforcement. In other words, responsibility without accompanying authority to carry that responsibility out. And, more often, hoops to jump through with stumbling blocks placed before the hoops.

I had not yet embraced the Kong side of me when I was trying to navigate all those hoops and do “the right thing.” These events span 2009 through 2012:

1. I had my GP call DCF on my behalf, only to be told by the DCF inspector that my house was in danger of being condemned due to my partner’s hoarding. The DCF inspector then handed the case off to Therapist #1 when he learned my partner had gone into therapy.

2. Therapist #1, after making little if any progress with my partner, quit (I have no idea whether those two were related). My partner got handed off to Therapist #2.

3. Therapist #2 threatened me with arrest due to the clutter and said my partner would be taken away. Therapist #2 later apologized to me after I learned and told her that no, I am not my partner’s legal guardian.

4. The following is taken from a journal entry detailing my meeting with Deputy R, badge #0663, in March 2011, after a particularly frightening outburst by my partner while I tried to clean up the house:

I told him I was looking for guidance. I gave him the details of my situation, backed up by a box of my partner’s medical records.

Here’s what he said:

(a) My partner overinflating — unbeknownst to me at the time — her 35 psi tires to 60 psi is no big deal; those tires can take much more (her blowout on our state road (speed limit 60 mph) notwithstanding).
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(b) My partner bringing feces in from the street and putting them in the fridge didn’t faze him at all.
(c) My partner hitting a nurse is not unusual behavior. You see that a lot in hospitals. Her other hospital behavior didn’t faze him, either: her walking naked from the shower into the hallway, her keeping her room temperature so high it raised her temperature to 102.8 (requiring an extra day for observation), and her storing cottage cheese in her bureau drawer “to finish later” so that it became smelly — documented in writing on patient flowsheets.
(d) I won’t be arrested if the house isn’t cleaned up. What my partner’s therapist told me was wrong. “We handle criminal cases,” he said. “I don’t tell the therapists how to do their job and they don’t tell me how to do mine.”
(e) He didn’t know what DCF would do. Probably tell me to clean up the house.
(f) As for my worry about my partner’s impulsive behavior on long drives (which has included sudden yelling, jostling my arm at the wheel, squirting windshield wiper fluid, and undoing her seat belt to squirm and get stuff from the back seat while I was in a center highway lane, unable to pull over), he said, “Just put her in the back seat and keep her distracted.”
(g) He said getting her Baker Acted or filing an ExParte “wouldn’t help.” (Friends had suggested Baker Acting. The DCF inspector had suggested I file an ExParte.)
(h) He responded to my clutter photos by saying he’d seen much worse.
(i) When I told him about the escalation in my partner’s behavior, he told me I was doing all that I could do under the circumstances.

Our house was in this kind of shape at the time:

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KONICA MINOLTA DIGITAL CAMERA

KONICA MINOLTA DIGITAL CAMERA

5. Therapist #2, seeing that my partner’s original therapy goal could not be met, changed the goal to “improving communication” between us. That way we could “meet the goal” before my partner and I were both “maxed out” at the clinic. My partner was referred to an ICCD Clubhouse, to which she does not want to and cannot be forced to go.

6. Lawyer told me that my partner is not in bad enough shape for a competency hearing. (Neurologist in Tampa said he could tell when my partner was on her best behavior.) Lawyer then added that becoming my partner’s legal guardian would heap all sorts of additional responsibilities and liabilities on me, but I still would receive no help in enforcing anything.

7. After years of gathering medical data and finally getting a definitive diagnosis (from obsessive-compulsive disorder to schizophrenia to the current MS that acts like traumatic brain injury), following the instructions of therapists and doctors, we were told by disability lawyer #3 that we don’t have the right medical records from the right time period to qualify my partner for disability benefits.

8. Therapist #3, a private therapist of my partner’s own choosing, was equally unsuccessful. At the end of a year of therapy, she retired. (I have no idea whether those two were related.)

Through it all I kept banging, banging, banging my head against a brick wall, trying to bust through. I often asked myself WWKD: What Would Kafka Do?

“You were so friendly to me earlier on,” said K., “and you explained everything, but now you abandon me as if I were nothing to you.” “You have to go,” said the priest. “Well, yes,” said K., “you need to understand that.” “First, you need to understand who I am,” said the priest. “You’re the prison chaplain,” said K., and went closer to the priest, it was not so important for him to go straight back to the bank as he had made out, he could very well stay where he was. “So that means I belong to the court,” said the priest. “So why would I want anything from you? the court doesn’t want anything from you. It accepts you when you come and it lets you go when you leave.”
― Franz Kafka, The Trial

Kafka never met Maj. Kong. Or Dr. Strangelove.

Sometimes what another person might call “sainthood” in me, I call learned helplessness.

The term “learned helplessness” is often associated with depression, and I’ve been there numerous times. My journal is filled with what I affectionately call “existential crap.” The Kong side of the coin keeps me from being depressed these days.

My bomb-riding takes a quieter form, but it is still bomb-riding. I live in what I view as an unsafe environment. I do what I can to make it less unsafe. The rest of it I let go — whoopin’ and hollerin’ in the Kong fashion (which in me means doing the things I enjoy — being creative, enjoying nature, reading, etc.) — because life is short and fickle and the least I can do is enjoy myself however I can, in a way that is within my power to do.

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Finding ways to communicate with my partner gets better results than locking horns with her. The more stressed she feels, the more bizarre her behavior can become. Admitting to her that I feel “helpless” when it comes to her using her burner as a space heater has made her more willing to decrease its use. In short, it lets her do something for me, which in turn makes her feel better.

In Wednesday night’s show we talked about the resistance to showing our vulnerability, especially to our carees. In my experience, sometimes showing my vulnerability to my partner aids our negotiating process.

Better communication — and better understanding of her situation — has also made my partner a much better passenger on long drives. She herself suggested that she could sit in the back seat. She had made that suggestion after her fidgeting bumped my automatic transmission from Drive into Neutral on two occasions, making for some — *cough* — excitement on the highway. I later learned that the shift is supposed to do that and is actually a safety feature. I don’t think the car designer ever had someone like my partner as a passenger.

This is also where the “Mother Teresa” side of the coin comes in. My spirituality keeps me going. My blind faith, for lack of a better term. As I told the woman I met last Friday, I’m still on this side of the grass. That’s my bottom line. Everything else is gravy.

That serenity also keeps me from getting depressed. The worldly “shoulds” fall away. “It is what it is” becomes a talisman.

My partner hates that saying. “What is it?” she asks. “It has no meaning!”

Precisely.

Or, as I like to think of it, hidden meaning.

“If a man wishes to be sure of the road he treads on, he must close his eyes and walk in the dark.” — St. Juan de la Cruz (1542-1591)

“Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain.” — Bene Gesserit Litany Against Fear, from Frank Herbert’s novel Dune.

Profile photo of ejourneys

About ejourneys

Ejourneys cares for her partner, who has MS that acts like traumatic brain injury.  Author of Caregiving in Five Lines (all proceeds from sales benefit Caregiving.com) and contributor to several CareGifters anthologies, ejourneys is a panelist on Your Caregiving Journey's "Hot Topics" show.  She manages the groups Gay, Lesbian, Bisexual, and Transgendered Caregivers; MS Caregivers; and Caregivers Create; and is a co-founder of VRide.

4 thoughts on “Two Sides of the Coin

  1. Profile photo of Janisis

    Thank you for sharing this. You have put a lot of thought into your role as caregiver. Perhaps I should start journaling.

    Reply
  2. Profile photo of @gail

    @ejourneys and @Janisis, as usual ejourneys? I learn so much from you! As much as I might be succinct? You are elegantly prolific! I love it! Oh yes, Janisis? I think journaling has helped me greatly and I have a 3 ring loose leaf notebook for each month I have been at caregiving.com with copied articles and blogs etc. (and many are ejourneys) which I keep in it. Then I journal in between. It is a goldmine for me. I read and reread it frequently. BTW? Wait until you get the two “COMFORT BOOKS” from Denise! You will cherish them and can even get quotes to blog off of for the site! We would love hearing from you too! You have a wonderful way with words which I know I could learn from too!

    Reply
  3. Profile photo of DeniseDenise

    Hi EJ– I realized today I had missed your post.

    And, what a miss. Mother Theresa and Franz Kafka in the same post. When I was in Prague a few years ago, we stopped in a coffee shop that served packets of sugar with a photo of Franz on the packet (aka a free souvenir).

    I love the idea of facing and living beyond the fear. Just letting go and letting is. I just might try that tomorrow. :)

    Thank you, EJ. You’re a find.

    Reply
  4. Profile photo of BobBob

    Incredible blog EJ. I related to the two sides and to the learned helplessness. I still get frantic sometimes. I have to remember to let go. I really liked the piece by Kafka from “The Trial”. also loved the two last quaote from St. John of the Cross and Frank Herbert. I especially was drawn to the quote from St. John. I need to not rely so much on my own understanding. I would say every morning while I lay in bed dreading what may happen, once I get up the day rarely turns out the way my fears were predicting. I need to walk more by faith and not by sight. I need also to see that in my defenselessness lies my safety–something I learned from “A Course in Miracles.” When I’m in my right mind and going through a difficult time, I also need to remember a tool I often use….Lord God, take control. Thanks for sharing. See what you did, You got me blabbing:)

    Reply

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