Grape Jelly

 I love jam and jelly. My mom taught me to make jam (jelly always seemed so much more work and besides, I like fruit pulp.) We specialized in tomato jam (seasoned with cinnamon and cloves). These days I make cranberry-rhubarb and blueberry.

One day, I wanted a snack, something small and light. I opened the fridge and got out the jar of Welch’s grape jelly. I never buy the stuff: I’ve graduated to Trappist brand. The Welch’s probably entered the house during a family reunion last summer (and is still unfinished a year later). I took a spoonful and had such a feeling of wellbeing: I thought it was the sugar.

But the next time I craved a spoonful, a memory came to mind: a bitter penicillin pill tucked in a spoonful of grape jelly and offered by my mom. I realized that grape jelly, which nowadays I regularly eschew, is a comfort food for me.

I had an odd relationship with pills as a young girl. It was an ordeal for me to swallow pills. I still have trouble, even though I have plenty of practice. Between vitamins and psych meds, I swallow ten pills a day. And I still occasionally gag.

One day my mom and I came upon a solution (when the jelly wasn’t sufficient). I kneaded some white bread into a mass of goo and wrapped the pill completely. Without the bitter taste I was able to swallow it. Mom pointed out that the wrapped pill was larger and should be harder to swallow, but for me the wrapping was just what I needed to get the pill down.

I probably won’t make a habit of buying a large jar of Welch’s grape jelly. My homemade cranberry-rhubarb jam and Trappist’s blueberry, cherry, and ginger, hold charms Welch’s can’t match. But the grape jelly warms something in the deep recesses of my heart.

Clarity?

For my monthly therapy session on July 10^th, I planned to talk about my relationship to my meds.

Working on my memoir, I had remembered an insightful question Thomas, my therapist since 2003, had asked eight years ago. At the time, I was overwrought when a neurologist had suggested my long-term hand tremor might be Parkinson’s Disease.

“What does that mean for you?” Thomas had asked.

I immediately saw the two interpretations the question invited: what would having Parkinson’s mean to my daily life and what did the diagnosis symbolize for me.

I have been terrified of Parkinson’s for fifty years, and his question helped me to see that my mind was spinning uncontrollably towards an imaginary future instead of sitting in the present moment, where the possible diagnosis impacted nothing tangible. I was living in the terror of a constructed, dismal future.

Arriving at the neurologist's office, I  had believed the tremor was medication-induced and expected it to continue, stable and unchanging. I hoped for a cure, but I had made an uncomfortable peace with it. Suddenly an awful future loomed before me. Can we just go back an hour, my mind pleaded, to when I thought I had a medication-induced hand tremor, not a life-altering, lethal disease?

I’ve struggled with this medication for over a decade, trying multiple times to get completely off , mostly without medical supervision. I’d been trying again (under the supervision of my current psychiatric nurse practitioner (NP) this time) and it hadn’t gone well. No catastrophe, but symptoms that worried me, Jim, and my therapist.

As I talked to Thomas two weeks ago, my question mirrored his earlier one: what meaning does this drug have to me? Why have I struggled so long to remove it from my life? I had promised my NP not to do anything until our next appointment in August and I assured my therapist I wouldn't. But after that, I really wanted to try, again, to taper off it.

Thomas looked thoughtful and said, “I’ve heard from my friends in recovery (a.k.a. Alcoholics Anonymous) that doing the same thing and expecting different results is…”

“Yeah, I know: the definition of insanity.”

That shook me: is my quest insanity? Could it literally lead to that state I've experienced three times in my adult life?  I brought the conversation up in a DBSA-Boston support meeting. I rarely say anything so revealing. Why do I chafe against it, I wondered aloud? Couldn't I just try again, tweak the experiment, get a different answer?

Lucy, a longtime friend, talked about the challenge of getting clarity. After the conversation had moved on to other topics, she circled back to say, with urgency in her voice, that a phrase kept coming into her mind: black-and-white thinking. That’s a cognitive distortion, a warped thinking pattern where one can’t see nuance, options, and different viewpoints and interpretations. Everything in life is simply black or white, on or off, virtuous or evil, Nothing in moderation.

This took me aback: was my thinking irrational? I respect her clarity and added her words to Thomas'. Was my quest to get off the drug dangerous? Couldn’t I just try it one more time? Tweak my procedure a bit and get a different result? Or had I made the definitive trial and found an undeniable need for the drug?

Do I need to SWIM!  (Stop Whining Instantly, Mary!)? I’ve been relatively stable for over ten years. The meds and therapy have kept me out of the hospital. I’ve been able to function, live a full life, even find joy and happiness. What is this impulse to cut back, to take none of this particular medication?

Is it insanity to try to taper down again? Can I find peace and clarity after 25 years of struggle against any and all psych meds?

I haven’t admitted this specific struggle to many. I wouldn’t have brought it up in the group except that I was confident that no one in the group would look to my example and stop taking their meds. I’m 63 years old. I present as a mature adult who has made peace with her circumstances. I’m not a reckless teenager, or am I?

SWIM! part two

While scrolling through my blogposts, I noticed Stop Whining! and SWIM! (Stop Whining Instantly, Mary!), which I wrote last April and May. So how am I doing on my campaign? Last Spring, I’d been whining about my inability to read and retain information. Embracing audiobooks has helped me reenter the world of books. It’s still frustrating when I struggle to read, but I have a new avenue for information to enter.

A perennial challenge is my hand tremor. Markedly worse in my left hand (and I’m left-handed), I can’t keep my hand steady without support, can’t handle a spoon or a camera or a needle and thread (this from a woman who made her sister’s elaborate wedding dress.). I don’t have an exact date of onset, but, to the best of my knowledge, it developed after my second psychiatric hospitalization, sixteen years ago, when I was put on a new medication. I’ve asked psychiatrists and neurologists about it and tried various drugs, but nothing has helped. Since the med protects me against mania, and does that very well, I have felt I had no recourse.

I recently consulted a psychiatrist in Boston. He suggested a medication that would probably be effective against mania, could possibly be better for my brain, and might, just might, let my brain heal and diminish the tremor. It wouldn’t be immediate and there are no guarantees, but I’m excited to try. The change will take a few months: gradually taking more of the new medicine then tapering off the old. And then just waiting to see if there is any improvement.

It's scary to change medication. If it ain't broke, don't fix it. But this has been broken, for a long time. Wish me luck!

EIght days on

Eight days after our mental health panel, I’m still recovering. I’m not overwhelmed by the reaction, but there definitely is a reaction.

The impact on me of telling my story to a room full of people surprised me. More powerfully than ever before, I was confronted with my madness. For the first time I was speaking it aloud, not to a group of sympathetic fellow sufferers or newcomers at my support group, most of whom are reeling from their first disturbing, excruciating experience of mental illness, either of their own or of their son or daughter or husband or wife. This time I was speaking to a room full of 'normal' people, who had never dealt with psychosis. The fact of my insanity hit me square in the face. Three times in my otherwise very responsible adult life I had been completely out of control.

It didn’t help that I couldn’t see many familiar faces. Every Sunday, I teach nine and ten year olds while the other adults meet together for classes. New graduate students and professionals routinely move into our congregation while others move away. There were many unfamiliar faces.

And it wasn’t just the madness. It was my description of my physical and mental limitations, the result of psych meds. To demonstrate the tremor, I tried to spoon water into my mouth. I tossed the empty spoon away halfway to my mouth. (Jim said later that it was hard to believe I wasn’t doing it on purpose, though he did believe me; it made an effective demonstration.) I expend a good deal of effort on masking my tremor. I don't drink soup in public and I’ve become expert in controlling the tremor when eating anything else. I eat only crisp and crunchy iceberg or Romaine lettuce salads: I can’t spear baby spinach or leaf lettuce.

Speaking my experience aloud, removed me far enough to see my behavior the way ‘normal’ people would, people with no history of losing their minds and sanity. It was sobering and disturbing.

I’ve written about two of my psychotic episodes in memoir-writing classes I’ve taken online with Gotham Writers Workshop. (I love GWW! Their online classroom structure is brilliant.) The student comments have been positive, and not just because that’s part of the ground rules, to be kind and empathetic, to find the good in every piece. I believe I have the skill to convey the madness and involve people emotionally. Many readers comment that mine is an important story to tell. It's exhilarating to write about the episodes.

But the panel was emotionally exhausting. A week later, as I spoke with a good friend who attended, I was still processing the experience. At first I had thought it was because I didn’t recognize many faces in the audience, that I was afraid of being dismissed as a human being by so many strangers. But, I soon realized that I’m afraid of being dismissed by myself. Can I trust myself to know the difference between mental health and mental illness? A therapist, back in 1996, when the ‘diagnosis’ was still a fresh, raw wound to my psyche, said there was a fine but  definite line between sanity and mania. He was trying to calm me, to assure me that I could trust myself and that I could function in the real world. And in most ways, I can. I don’t second-guess myself about everything; I just live life. But how do I balance the desire for creativity with the need for sanity?

Stop Whining!

No, I’m not talking about bereavement. I will be bereft of our son, David, until I die and meet him again.

I’m talking about some other whining in my life, specifically having to do with the side effects of taking manic depression medications. (For another post: why I hate the term ‘bipolar’.)

It has to do with subscribing to audible.com, after months or years of another son recommending it to me. I recently finished my third audiobook, A Town Like Alice by Nevil Shute. I saw a PBS miniseries back in my late teens and later read the book. I thoroughly enjoyed revisiting it. Listening to it brought me in touch with Mary Hazen. The one who wasn’t afraid of mania or depression, who didn’t have to worry about drug side effects.

What would she think of my whining? She would have no tolerance for it. So why should I? Habits are hard to break, but I’m ready to live onward without this one.

Wish me luck! I’ll let you know more about it next week.