Sometimes things come together: I sleep well enough to enjoy my day, and, after checking my daily to-do list, see that there is nothing that really needs to get done. It suddenly occurs to me that I could visit my friends Jesse and Shay, who live a little more than an hour north from me, and have my caregiver Jenna drive me.
When she arrives, I tell her my idea and find out she’s up for it. Let’s get out of town!
The day is perfect for an outing. It’s nearly the end of August and there’s a bit of coolness in the air, the heaviness of summer lifting for a bit.
We leave town and immediately get on the highway. We pass steep hills full of leaning redwoods and pines and I feel my senses awaken. Traveling – even a short trip out of town, always opens up my world, reminding me there’s more to life than the inside of my mind and the confines of my home.
Jenna and I converse on the way there. She’s only been working for me for a short time and this gives me a chance to get to know her better. She tells me a little about her unhappy childhood – growing up as an only child in a small town outside of Madison, Wisconsin and how she tended to her lonely spirit by climbing trees and watching all kinds of critters. I learn that she has moved around a lot since an adult, until she arrived in Mendocino County ten years ago and realized she had finally found her home.
I tell Jenna I need a break from conversing, knowing that when we arrive at Jesse and Shay’s, there’ll be plenty of it. I don’t want my brain to go on over-load before we get there and spoil the visit.
I turn and look out the window. We are passing through the tiny town of Laytonville, which holds not a whole lot more than a gas station, a general store and a few small restaurants. Old hippies live here side-by-side with rednecks pretty much amiably, it seems to me.
The road flattens out as does the scenery – there are less trees here, revealing gentle hills that are golden brown from parched grasses.
Finally, we reach Bells Springs Road and I direct Jenna to turn right onto it. The car immediately climbs, pavement turning to dirt and gravel. The washboard road jostles our bodies as we drive up and up, rounding one curve after another, a cloud of dust following. Occasionally, there is a break between madrone and manzanita on the right, revealing spectacular views of ridges spreading out for miles, with no houses in sight.
Eventually, just as I am becoming impatient, the road straightens out and we arrive at their driveway, which is steep but short, guarded by a large gargoyle leering at us at the base. We park at the top at level ground and get out.
I am always struck by the quiet here. I pause and take a moment, breathing in the stillness, which is settling after such a long and bumpy ride.
We stretch our legs and look around before nearing the house. Two large goddess statues line the pathway, almost as tall as full-grown women. Flat rocks nearby them have been carefully stacked creating a natural tower.
The house is unusual – what I would call a Northern California home, probably built back in the 70’s. It is weathered and rambling with two stories and sits amongst trees. Two decks are connected by a narrow walkway, which leads to the front door. As we walk in that direction, we pass potted plants and a large stack of wood, forcing us to walk single-file.
I hear voices call out and see Jesse and Shay out on the front deck. When Jenna and I reach them, I introduce everybody, then hug my friends hard – it’s been too long since we’ve gotten together.
A big oak tree bends over the deck, one of its huge branches almost touching it. Beside us is a carefully and lovingly constructed ornamental terraced garden. There are small, meandering pathways and a tiny pond with a run-off that’s gently burbling. It’s truly a thing of beauty.
Gardening has always been one of Jesse’s passions and has kept her busy over the years, but now that she’s in a wheelchair, she can no longer tend to this incredible creation of hers and has taken to making what she calls “faerie gardens”, that line the deck. These miniature gardens that she has worked on meticulously are made up of tiny plants made to look like trees, with elfin bridges, houses, and even people, and not one of them is the same.
They reveal the patience Jesse has, which is one of her most admirable traits, along with her great intelligence.
We take our seats and immediately launch into deep conversation. I have known these women for a very long time, so there is no need for small talk and pleasantries. Although I haven’t seen them for months, in many ways it feels like yesterday.
Inevitably, the conversation turns to health. Last year, Jesse was diagnosed with cancer. Surgery became necessary and she has recently finished rounds of chemo. Her hair has just started coming back and when I rub my hand across her head, I’m surprised with how soft it is. She talks about frequent doctor visits, anticipating test results, and the hardship of having to go to Ukiah for appointments, almost 2 hours away. As she talks, I check out her appearance more closely and realize she’s lost a lot of weight, which concerns me. Nevertheless, she seems cheerful and talkative, and my concern, at least for her emotional well-being, begins to wane.
It’s Shay, really, that worries me more. She has suffered from depression since she was a teenager. Her voice is often flat, and she sleeps a lot and has little vital energy. Jesse’s cancer has certainly added to her mental state, and so our talk turns to her struggles.
She has been on antidepressants for some time. At first, she had a hard time adjusting to one medication, but then they gave her some relief. But not long after, the effects abated then stopped working altogether. The doctors wanted to increase her dosage, which she did, and that helped briefly, but then again, stopped working. Discouraged, she cut back, but found it difficult on her body and even though she’d like to go off altogether, it became too hard to do, so she has given up and stayed on them, even though she no longer feels any relief.
She has also gone to therapy, read countless books on depression, quit sugar altogether and changed her diet. But all this has had no effect on her body/mind.
“The only thing that really helps”, she says, “That really gets me out of my head is being creative.” She closes her eyes for a moment. “I can get in this zone and it takes me away from everything and into this other world.”
Shay is an incredible artist, with many interests. Her main focuses have been jewelry, painting and drawing. Her studio is a work of art itself: Sketches are set up here and there. Cups and cases hold pens, colored pencils and brushes in various shapes and sizes. Tiny drawers hold all sorts of beads, necklaces, chains and clasps. Easels lean against walls. There are leather-bound journals with her creations in them, reams of paper for watercolors, as well as others’ artwork – from small sculptures to paintings to help inspire her.
After Shay speaks, Jesse adds, her voice becoming soft, “What’s hard for me is seeing how her depression affects her self-esteem. She’s so damn hard on herself!” Tears spring to her eyes.
I know this to be true. Shay constantly puts herself down, downplays her artistic abilities, compares herself to others in many areas of her life, and often, in her mind, coming up short. It’s painful for me to see this in her. I love my friend dearly and know her not only to be talented, but extremely kind, sensitive and thoughtful. I only wish she could turn those qualities towards herself.
Jenna chimes in, “Well, I’m not clinically depressed, but I have my days and my cycles with it. When the days turn into weeks, I start to microdose myself with magic mushrooms. It works for me. It interrupts the cycle.”
We’re all interested in what she has to say, and barrage her with questions. What kind of mushrooms? How much do you take? Do you get high? Can you take it with antidepressants and other medications?
Jenna answers carefully. “I can only speak from my own experience. I take a teeny weeny bit of psilocybin and I don’t get high. But, I feel…” She thinks a bit, “I feel better, is all I can say. Different. Something shifts inside, and my brain resets itself.” She shrugs, as if to say, “That’s the best I can do to explain myself”. “And I want to be clear here: I don’t know if it will work for you. I don’t know if you can take it with your meds. I don’t have all the answers.” She shakes her head with a sad expression on her face. “And unfortunately, I’ve run out of mushrooms myself and don’t know where to get any.”
We’re all quiet, taking in all this information.
“I do think,”, Jenna adds, “That if you ever try it – don’t do it alone. Have someone there with you. I’d be willing to do that with you, if you’d like.”
“But you don’t have any,”, Jesse says, making sure. “No. But I’m looking. I could let you know if I find anything.”
Shay sighs, sounding weary, but says “Well I like the idea of taking something natural…” She drifts off, “I’m not sure if I’m up for something new.”
I understand this reaction. I’ve tried so many other things over the years and got my hopes up: Maybe this will work. Often, I don’t get the results I want, or it makes me feel worse and/or gives me intolerable side effects. Even something as simple and benign like vitamin B-12 to help feed my nervous system, took me a long time to try out. I just did not want to be disappointed yet again.
There’s a lull in the conversation and suddenly, seemingly out of nowhere, their scraggly black, Noche (with a tiny spot of white on the tip of his tail), shows up demanding attention, putting smiles on our faces. More shadows have moved in on the porch, taking over most of the sun spots. As much as I don’t want to leave, it’s best that we get on the road before it becomes too dark.
We reluctantly say our goodbyes and as we pull out of their driveway, I look back and see Shay holding Noche and waving at us.
We’re quiet as we head home as I process the visit. Seeing these beloved friends always warms my heart, but breaks it, too, if that’s possible. I realize I want to “fix” Shay, as others seem to want to “fix” me, but I know it’s not possible and that hurts. Maybe, if Shay wants to try them, those mushrooms will help, I think, as we whiz by trees and hills. And maybe they won’t.
Microdosing – disclaimer: I am not endorsing the use of illegal or potentially dangerous drugs/medications.The subject of microdosing is only to inform my readers.
“It’s also important to know that not all psychological disorders lend themselves well to psychedelic treatment. While there is no scientific basis for the propaganda that psychedelics can “make you crazy,” it has been suggested that those with latent schizophrenia could have their condition triggered early by a strong psychedelic experience. Keep in mind this is still a new frontier of research, and people with certain medical conditions or on certain medications should absolutely not take certain psychedelics. Any properly run treatment clinic will have a full physical and mental health screening before treatment, and walk you through any contraindications that may be revealed. We do not endorse any illegal behavior, but from a harm reduction perspective, anyone who chooses underground treatment should exercise extreme levels of research, discernment, and safety precautions throughout the process.”
“Finding Integration Support – Beyond the psychedelic journey itself, integration of the experience after the fact plays a critical role in ensuring that the insights, progress, inspiration gained are translated into daily life in a sustainable way. Whether you are fresh out of an underground ayahuasca ceremony that helped you deal with childhood trauma, or a recent outpatient of an iboga center that helped you detox from an opiate addiction; a few weeks or months of integration support from someone who understands psychedelic treatment is immensely beneficial in securing your new goals, perspectives and commitments.” …
“Releasing the Stigma – One of the most insidious aspects of mental illnesses is the stigma that surrounds them. Despite the statistics that show how common these disorders are, our culture still often adopts a “toughen up and go it alone” approach, leading many to isolate themselves and be fearful of speaking up about their condition, much less seek help. Psychotherapy, prescription medications, and conventional rehab centers do help many people stabilize their lives, but sometimes these routes are not enough to fully eradicate the pain, trauma, and stress that lay at the core of the disorder, leading people to simply numb their symptoms without seeking true healing.” “Radical shifts in behavior, self-image, and wellbeing are something that psychedelics excel at when used appropriately, but not everyone is able to travel abroad for psychedelic treatment or willing to find underground options. The single most important thing that anyone suffering from an addiction or mental disorder can do is to speak up about it to their loved ones and seek help. Shame and stigma surrounding these issues should be forever discarded, as these conditions are an integral part of the human condition, and everyone faces stress, challenges, and addictive habits in their own way.”
… “Carina*, a 59-year-old therapist in Oregon, sees the ripple effects of the anxiety and stress of our current cultural climate every day in her work—and in her personal life. She has struggled with depression for much of her career, managing it with regular therapy sessions and movement practices like yoga and dance, but when she found herself struggling with a particularly challenging depressive episode in the wake of the #MeToo movement, she began exploring alternative treatment modalities.”
“That’s when she was introduced to microdosing for depression. “So much of depression is feeling stuck,” says Carina. “Microdosing has helped me get out of preservation mode; it helped me get out of the stuck places and see that there are options.”
“Shrooms (aka psychedelic mushrooms) and LSD have a rich résumé of providing a hallucinatory high, and we’re in the midst of a psychedelic resurgence. The recent interest in psychedelics isn’t a throwback to the ’60s so much as it is the potential future of mental health treatment—especially for depression and anxiety.”
“The goal of microdosing is not to get you high. As the name implies, the practice involves taking a small amount—a microdose—of psilocybin (in the form of mushrooms) or LSD every few days. Unlike higher doses of psychedelics, which typically produce the “trip” experience these substances are most known for, the effect of microdosing is much more subtle. Most people start with “around 10ug of LSD (around a tenth of a tab) or 0.1g of dried psilocybin mushrooms,” according to The Third Wave, a psychedelic education resource. (The “right” dose varies from person to person. You should never take any substance without consulting your doctor first.)”
“Psychedelics aren’t legal—they’re currently classified as Schedule I drugs by the U.S. Drug Enforcement Administration, meaning there’s “no currently accepted medical use and a high potential for abuse.” (For the record, cannabis is also classified as a Schedule I drug by the DEA.) That poses some considerable risks. Because psychedelics aren’t legal, they aren’t regulated. There’s no way of knowing what you’re getting, where it’s coming from, or how strong it is, which can put your safety in jeopardy.”
Medical News Today “Psychedelics: Risks and benefits of microdosing revealed: New research, published in the journal ACS Chemical Neuroscience, finds both potential benefits and risks of using psychedelic microdosing to treat mental health problems. The study reveals effects on cognitive skills and sociability, as well as metabolic and neuronal consequences.” By Ana Sandoiu on March 4, 2019 https://www.medicalnewstoday.com/articles/324609.php#1
“An emerging body of research is making a case for using psychedelic drugs to treat mental health issues.”
“For instance, two studies published last year showed that psilocybin, the active psychedelic compound in magic mushrooms, alleviated symptoms of treatment-resistant depression.”
“Moreover, the psilocybin did so without causing any side effects of conventional antidepressants. Such side effects typically include emotional blunting or apathy.”
“People who use psychedelics to improve their mental health and boost their overall well-being tend to do so with a technique called microdosing. Taking microdoses of a psychedelic drug means taking only a fraction of a dose that is required to have a full-blown psychedelic experience, or “trip.”…
“The lead researcher is David Olson, Ph.D., an assistant professor in the departments of Chemistry and Biochemistry and Molecular Medicine at the University of California, Davis.”
… “conflicting results may suggest that an acute dose of psychedelic substances affects the brain differently from intermittent microdoses.”
“Side effects notwithstanding, say the authors, the current results are promising because they suggest that researchers can separate the psychedelic effects from the therapeutic ones.”
“Our study demonstrates that psychedelics can produce beneficial behavioral effects without drastically altering perception, which is a critical step towards producing viable medicines inspired by these compounds,” says Olson.”
“This is the first time anyone has demonstrated in animals that psychedelic microdosing might actually have some beneficial effects, particularly for depression or anxiety. It’s exciting, but the potentially adverse changes in neuronal structure and metabolism that we observe emphasize the need for additional studies.” David Olson, Ph.D.”
“Microdosing, or taking tiny amounts of a drug daily, does more than just get people mildly high. Specifically, psychedelics such as LSD (which is very similar to psilocybin, pharmacologically speaking) act on the neurotransmitter system, serotonin, which is widely used in traditional antidepressant drugs, says Harriet De Wit, PhD, founder and primary investigator in the Human Behavioral Pharmacology Laboratory at the University of Chicago. “So, there is some neurochemical rationale for the possibility that it improves mood,” she says. Compared to traditional antidepressants, which can take weeks to take effect, microdoses of LSD have been shown to have marginal subjective effects after just one administration”, she adds.”
“All of this points to the greater need for research into promising drugs like psilocybin. Most experts agree that psychedelic drugs have a lot of potential — either taken in microdoses or in combination with psychotherapy with psychological guidance. “This is an exciting new chapter in psychiatric research,” Dr. De Wit says.”
“The artist is a receptacle for emotions that come from all over the place: from the sky, from the earth, from a scrap of paper, from a passing shape, from a spider’s web.” ~ Pablo Picasso
The following is another excerpt from my unfinished book.
Years ago, during a meditation session, I realized we are beings that are constantly creating, if only in our thoughts. I also realized that when we are in the act of creating something, we are connecting with Creation itself. A special relationship is forged as we link up with that essence, and we feel energized, plugged-in, an open channel. Any act of creation begins with that connection and ends with an outer expression of that connection. This process is healing as we feel those creative juices flow through us and we find yet another way to connect with our innermost self.
Finding a creative outlet can be very useful for those of us with chronic health challenges. Instead of vegging-out in front of the TV, getting lost in cyberspace for hours, or spiraling into depression or anxiety, we can focus our energy toward something that really nourishes our spirit. When we are being creative, we can shift our mood and
redirect that energy, transforming the chaos of fear or despair into the exciting chaos of creativity and by doing so, free up any numb, stuck places. It gives us a constructive outlet for all that we experience.
Being creative doesn’t require a certain level of expertise. Anyone can pick up a pen or a paintbrush. What is required, is a desire to play, to experiment, to explore, and to listen to what wants to be expressed. It also doesn’t mean you have to end up with a polished finished product. The outcome is often beside the point. Being creative can be as simple as playing your favorite music while dancing in your kitchen, or doodling on a piece of paper while you wait in a doctor’s office. It doesn’t mean you have to write a novel or to be published to write, or paint a landscape and have an art show to dabble in watercolors, which is really good news for those of us with limited energy. What’s important is to be engaged in the process and to allow the creative force to move through you with as little constraint as possible.
Most of us, at one time or another, experience blocks in our creativity. I think a large percentage of the time the reason for this is the critical voices in our head: “I’m too old for this”, “I’ve never taken a class”, “this is stupid”, or “Debra is really good at this – I’ll never be as good as her”.
During meditation, when critical voices arise, I try to recognize their tones for what they are, and to the best of my ability, take note of them and continue meditating. They can be handled the same way in regard to creativity. When the critic starts in, we can just say hello and continue what we’re doing. If it persists, we can set aside what we’re doing and take out a journal and let the voices have their say. We can write it all out as if they were talking and write until we can’t write any more. We may uncover something useful: We may recognize the voice of our mother, or our second grade teacher. Then, when we’re through, we can go back to writing that poem, creating that dance, painting that picture.
Another way of freeing up blocks is to try a different outlet for a bit. If we’re blocked with the still-life we’re painting, we can try our hand at a clay sculpture, or pick up the kazoo. There is something about trying out a different venue that can free up stuckness in another. It may be just that by taking a break from your particular creative endeavor and putting your attention elsewhere that makes a difference, or just allowing space for the flow of creativity, but I’ve seen this happen many times within myself.
Tapping into the creative can be a powerful and intense process that can have the side effect of bringing about a healing catharsis. I have a friend who began to have memories of early childhood sexual abuse. She started to make abstract pictures – nonverbal expressions of what she went through so long ago. She had never tried her hand at art before, but suddenly felt a compelling need to do so. During the process, she became possessed – spending hours working on them, for weeks. Afterwards, she had a series of probably ten pictures, which she shared with friends. The pictures were haunting and disturbing, especially the first ones, and then they became lighter and more hopeful, reflecting her inner process.
Another friend of mine had a car accident and suffered head trauma. She ultimately had to leave her job, because of her incapacitating symptoms. The accident changed her life completely and she was obviously distraught. She, too, began to make abstract pictures with an urgent need to express herself. Making these pictures became her main focus, churning out several pictures daily.
Creating an expression of your particular health challenge may be something you want to do.
Also, finding an outlet that is non-verbal can reach into the deepest parts of ourselves that are beyond words, and
can satisfya profound need in us.
One particular hard time in my life, I was experiencing partial seizures regularly. Because of cognitive problems, describing in words how my body felt was too difficult for me, so I drew a picture instead that was
much more expressive of my inner experience. Everyone I showed it to, had a visceral reaction to it that gave me a sense that they understood how it must feel to be me, leaving me feeling more connected with them and less isolated, altogether.
When I’m not feeling well, but want to dabble in something new and different, I can easily become overwhelmed and can’t think of what I’d like to do. When that’s the case, I choose from a list of things I made up when I was feeling better. You might want to do the same for yourself. The following is a list you might want to consider, made up of activities that range in energy level.
Try this: Take a small jar and fill it with some dried beans. Put on your favorite music and shake your new, instant percussion instrument.
Try this: Take out a pad of paper and pick a topic, any topic, and for the next ten minutes, write without stopping and no crossing out. Just let your mind take off. This technique was developed by Natalie Goldberg, who has written many books on writing as a spiritual practice (1986). To stimulate your creativity, I highly recommend Julia Cameron’s books.
Try this: Make a collage. Your library or your doctor’s office may have old magazines that they’ll let you have. Bring the magazines home and cut out images and/or phrases that appeal or inspire you. Have fun with it. You may want to have a theme in mind when you do it, or just want to create something of beauty you can look at later.
Try this: Buy a cardstock and envelopes at a craft store. Use some of the images you cut out for collages and in no time flat, you have pretty cards for various occasions.
Try this: Make a model from a store-bought kit.
Try this: Buy adult coloring books at your local bookstore. Instead of using crayons to color with, buy a small set of watercolors, instead.
Try this: Buy a set of colored pencils and a pad. Put on your favorite music and let yourself go.
Try this: Go to the library, to the arts and crafts section and peruse. If something catches your eye, check it out.
Try this: Make a list of all the creative hobbies you’ve always wanted to do. Remember how you’ve always wanted to knit a sweater? Now’s the time.
Try this: Go for a walk. Collect pine cones, sticks, shells, a feather. Buy an embroidery hoop at a craft store. Make a mobile.
Consider this: Creativity with others.
The other day, when feeling too ill to write, I took out my colored pencils and pad of pages, and my caregiver and I made some drawings. I decided my cats were the perfect inspiration.
Try this: Using watercolors, colored pencils, pastels or??? and a big pad of paper, create an abstract picture of your symptoms. Don’t overthink this … just grab colors that speak to you, and go. Because symptoms fluctuate, you may want to do a series of pictures. What was it like to do this? How do you feel afterwards?
“The idea is like a blueprint; it creates an image of the form, which then magnetizes and guides the physical energy to flow into that form and eventually manifests it on the physical plane”. ~ Shakti Gawain
“In a general sense, all artists are shamans, insomuch as they are channeling images or concepts on behalf of the collective”. ~ Vicki Noble
Taggart, Emma (September 6, 2018). My Modern Met. Artist Illustrates His Battle with Depression as a Mystical World of Spirit Animals. https://mymodernmet.com/depression-illustration-jungle-animals-dawid-planeta/
I arrived at this hospital yesterday. When checking in, I told them I had been feeling suicidal. Someone put me in a wheelchair and brought me up to the 4th floor: the psychiatric ward. Someone else went through my belongings and found a pair of draw-string pants and pulled out the thin, cotton strip that would cinch around my waist. Did they really think I would kill myself with that?
Then, I was shown to my room with a single bed, the only window looking out at a drab grey building. I was told someone would check in on me every fifteen minutes. Instead of this unnerving me, I felt a great sense of relief. I felt safe for the first time in what seemed a long time.
The next day, I meet the other patients. There’s Andrea, who has obviously either been here for some time, or has come here before. She shows me “the ropes”: where to do laundry, where to shower, what time meals are. She rooms with Jasmine, who appears to be about Andrea’s age and it’s clear they have formed a friendship. One time, I hear a commotion, so I poke my head out of my room. Jasmine is in a wheelchair and Andrea is pushing her hard and fast down the corridor. They are both laughing and whooping it up and I find myself smiling a much-needed smile.
Then there’s Oscar with his droopy mustache and shuffling walk, who hangs out often with the waif-looking Toby; the two of them often having private conversations.
And then there’s Henry, who is wall-eyed and Asian, whose black, untended hair stands straight up. He can’t bear to look anyone in the eye and his whole body language is apologetic. He exudes both sweetness and confusion.
Victor is the only patient I am afraid of. He exhibits that kind of behavior that you see on the street that you want to avoid. He stands in a corner and argues with someone – someone the rest of us can’t see. Sometimes his voice becomes louder, turning to rage. Because I am so very anxious, and because there often seems to be no orderlies around, my fear escalates. I wring my hands; will he become violent? Will he unleash his violence on someone here? Me, even?
The other patients and I keep our distance from him. We all, excluding Victor, gravitate to one another, forming a kind of short-term family, while he remains a loner. I don’t know about the others, but I want it to remain that way.
But on my third day here, something changes that.
We are all gathered in the community room, including Victor. We take our places – Victor in the corner arguing, the rest of us sitting around the table, loosely interacting.
The TV is on, as usual. Today, someone has put in the DVD “Ghost”, which we look up at occasionally. Then the famous scene comes on with Demi Moore at the potter’s wheel, while Patrick Swayze comes up from behind, puts his arms around her, his hand joining hers. Then the familiar song, “Unchained Melody”, by The Righteous Brothers starts up, enhancing the scene.
Suddenly, Victor stops arguing. He turns from his corner and walks towards us and looks at the screen. He listens for a second, then opens his mouth and starts singing. His voice is full. His voice is tender. His voice is full of feeling. He knows every word, and every word is pitch-perfect. His gaze, usually hard and glazed over, becomes bright and clear, his blue black face is beatific and glows with an inner light. He is angelic.
The rest of us watch him, our jaws dropping. We are transfixed. We can’t believe what is happening. We know we are experiencing some sort of miracle.
And then the song stops – and when it does, Victor’s demeanor changes, and he turns away and goes back to his corner, resuming his argument.
For a full moment, no one says anything. We are stunned into silence. For a full moment we drop our roles (and our guard) and fall into that silence.
And then the moment passes. Patrick Swayze removes his arms from Demi Moore. Andrea and Jasmine look at each other and giggle. Oscar and Toby exchange glances. I bite my nails, my nerves returning. Henry hangs his head, as if embarrassed to be alive.
∗ ∗ ∗ ∗ ∗ ∗
Now, looking back at that incident, I realize many things. The first, most obvious realization is that music has the power to heal, if only for a few minutes. Everybody knows this, to a degree. If I’m feeling funky, I can, for example, listen to Al Green’s “Belle” and my whole mood shifts. When his beautiful, soulful voice enters the room and for some time afterwards, I feel uplifted, changed.
The second realization is that for as long as “Unchained Melody” lasted, Victor was no longer “other” – someone to be feared and avoided. For those few minutes, he became a part of our weird, dysfunctional family. He became a part of us, and we were a part of him.
For years afterwards, I thought about that incident and wondered about Victor: How did he get that way? Why was he so angry? Was it purely a “chemical imbalance”? What was his life like before he came to the hospital? Did he live on the streets? Does he now? Did he ever fall in love, have a family?
Of course, I don’t know the answers to these questions. I only know he is my brother of sorts. I know his metamorphosis made me believe in miracles. I know I want beauty to be always a part of his life.
And, wherever he is today, I hope he is singing.
Unchained Melody by The Righteous Brothers/Produced by Philles Records (1965)
“I’m sorry. I’ll be quick. I want to let you know a caregiver won’t be coming today, after all”.
“Oh. Who was on”?
“Liza”, I say.
And then I quietly leave the room, closing
the door gently behind me.
As I return to the living room, I reflect on our relationship. Cari and I met through a mutual friend. I had heard she had epilepsy, too, and I really wanted to know how she managed.
I had a lot of compassionate friends, but I knew it would be different if I met someone who dealt with the same issues that I did. I wanted to know: how did she cope? Did she have seizures often? What kind? Did she take meds? Were they under control?
We eventually got together and shared information, and shortly thereafter, became friends. The friendship turned into attraction and we fell in love. A year later, we exchanged vows in a wedding ceremony in our front yard.
When I knew we were falling in love, when I knew this was a relationship I wanted to pursue, I realized at some point we would need help (I had learned in the first few months of knowing her that she had other health challenges, including debilitating migraines, chronic sinusitis, and what eventually culminated in arthritis throughout her body, due to past injuries and years of playing sports. On top of that, she occasionally walked in her sleep!). At first, this help came from friends who were willing to step in when we were both down for the count, mostly to do needed errands. But I knew as we aged, we would need more assistance.
Evening is my favorite time of day, because it means that Cari will come out of her den and we’ll watch TV together for a couple of hours before the caregiver shows up for the night. One of our cats (Reggie) curls up between us as we watch our favorite programs. It’s family time for us.
I love this ritual. We may not talk much, but that doesn’t matter; her presence is really all I need. She gives me something that no one else can, because she understands what it is like to live with chronic conditions and because some of those conditions overlap.
Over the past 25 years, we have seen each other through seizures, pain, emotional ups and downs, struggles with doctors, changes in medications and even menopause. We have figured it out. We get each other. And that gives me incredible comfort, and that is what has kept us together.
There are times, though, when one of us becomes insecure and wonders: Am I too much for her?
Here’s my response when it’s she that feels this way:
All people I know who have chronic illness challenges struggle at some point or another emotionally. There are times when our emotional suffering can overtake our physical suffering. Fear can grab a hold of us and spiral out of control, turning into anxiety or panic attacks. Thoughts turn dark and the spiral becomes depression or despair.
We’ve already explored the difficulties one faces at the onset of our illness; loss and the fears that often go hand-in-hand with it (refer to my previous post of April 8, 2019 Excerpt from My “Book” “Introduction and Initiation to Loss”). But, there are other scenarios that can cause difficult emotional responses, making it hard to maintain our equilibrium. One might be that we’ll go through a period of time when our symptoms are minimal and we have more choices available to us, our life opens up again. We might start to make plans, we may think we can get our career back on track. We may even believe that we are restored to perfect health, never to deal with the illness again. Then gradually, or perhaps suddenly, something shifts again, and we take a turn for the worse. It’s easy to see that these sets of circumstances could trigger our old fears of isolation and dysfunction or launch us into depression.
But sometimes, even if we’re doing okay physically, intense, dark emotions seem to rise out of nowhere and we are carried away by despair, hopelessness or dread. What’s going on here and what can be done to ease our minds and hearts in all types of scenarios?
First of all, it’s important to understand that because of the intricate relationship among them, when the body is in a weakened state, so is the mind and therefore, the emotions, creating an atmosphere that most of us find very challenging. I notice this with able-bodied people as well and more clearly, when they get something like the flu. At first, they’re unperturbed, and take remedies or pills and rest, knowing it will pass. But then, as the days go by and they realize this particular strain of flu might go on for a few days, they become grumpy. But then, if the flu goes on for weeks and the symptoms are difficult; high fever or stomach cramps, accompanied by sore muscles, for example, their usual cheery and determined disposition changes. They become a little nervous: When’s this going to end? They exhibit insecurity and question their significant other: Do you still love me? As people dealing with chronic illness, our challenge is on-going, which includes our emotional and mental reactions to our ill health, as well.
Secondly, it’s important to understand that some of the emotional and mental challenges that arise for people with chronic illness can be symptoms of Post Traumatic Stress Disorder. This understanding took me years to realize. It wasn’t until I saw a tv program about a Vietnam vet with PTSD, that I recognized myself – a lot of his symptoms were similar to mine: insomnia (although I believe mine is partially due to my neurological makeup), hypervigilance (for me, during the night: what if I have a seizure?) and occasional panic attacks (heart pounding, stomach in knots, persistent anxious thoughts). To come to the understanding that I have PTSD, was an enormous revelation for me and extremely validating.
In the past, when I exhibited these symptoms, I felt a certain shame with it: Why am I so weak-minded? Why can’t I sleep like everyone else? Why am I so fearful? Now I had a name and a reason for these particular reactions, which made me feel better about myself and therefore, more compassionate. I understood that for me, having grand mal seizures are traumatic, and that even though it’s been 20 years since I last had one, the fear of grand mal seizures is still great.
Because of this understanding, I could become kinder to myself and admit, with less shame (I’m still a work in progress), that I needed help. So, I hired caregivers. This way, at night, for example, when my anxiety becomes too much for me, when depression enters the room once again, I don’t feel like I have to “power through” – I can get up, wake up my caregiver and we can talk, have a cup of tea, and I can calm down more, and maybe even laugh!
sleep disturbances, hypervigilance, difficulty at work, impulsive destructive behavior, problems with concentration, strained relationships, changes in personality, loss of identity and sense of purpose
Physical symptoms of PTSD
headaches, colitis, and respiratory issues, ulcers
Of course, some of these things could be attributed to other causes, as well. It’s probably best to talk with a practitioner who is familiar with PTSD in people who are chronically ill, but if you have some of these symptoms and something resonates in you that their cause is PTSD, then I’d say chances are you are right.
As people living with chronic illness, we can feel we no longer trust our bodies, that they aren’t safe or reliable. This feeling affects the very core of our being. We feel unprotected. We live with the fear of a recurrence of our worst symptoms. We sometimes feel unsupported and misunderstood by our friends, family and doctors who think it’s all in our head, or that we aren’t trying enough to get well. This can further compound our doubts, fears and shame about our innermost selves and cause further isolation from community and society at large. Our financial position may change drastically, which affects us on a core survival level: How will we pay for any medical help? All this can be very traumatic and shouldn’t be minimized.
A direct quote from Counseling and Psychotherapy reads:
“A recent study showed that people whose worst event was a life event such as chronic illness, had more PTSD symptoms on average, than people whose worst life event was typically traumatic, such as an accident or disaster”. I feel the truth of this statement in my bones and I believe the reason for this truth is that our trauma is on-going, not a one-time occurrence.
According to studies, treatment for PTSD is multi-faceted, using a combination of education, medication, and therapies to address the effects. This is certainly true for me. In order for me to have any hope of even a fair night’s sleep, with my psychological and neurological makeup, I need a combination of hypnosis techniques, emotional support, medication and remedies. If you think you suffer from PTSD, it’s probably best to tell your practitioners (ones that understand this phenomenon) to get the help you need. It may take experimentation to figure out what works best for you, and what might make the best combination of therapies, support, medication and/or remedies. Understand that you may not ever “get over” the feeling of being traumatized but can look towards improving the quality of your life.
“Long married, Fiona (Julie Christie) and Grant (Gordon Pinsent) find their mutual devotion tested by her struggle with Alzheimer’s disease. When it becomes apparent that the condition is worsening, she checks into a rest home. Grant visits her a month later and finds that his wife has grown close to Aubrey (Michael Murphy), a fellow resident. Jealous and hurt, Grant finally seeks help from Aubrey’s wife (Olympia Dukakis) when Fiona suffers a crisis.
Release date: May 4, 2007 (USA), Director: Sarah Polley, Screenplay: Sarah Polley”, and David Wharnsby, editor
My observance: Julie Christie is extraordinary in this role. You can almost see the deterioration of the disease by the expressions on her face as her memories slip and slide away from her. Great acting
I recently saw a documentary called Teddy Pendergrass: If You Don’t Know Me (Flooks, Lichtenstein & Tempest, 2018), about the life and death of Teddy Pendergrass. For those of you who don’t know, Teddy Pendergrass was a soul singer who became popular in the ‘70s. But at 31, at the height of his fame, he had a bad car accident that made him a quadriplegic. Fortunately, he was able to breathe on his own, talk, and raise his arms half-way.
Understandably, he fell into a deep depression. Can you imagine? He went from being a famous, successful star to suddenly becoming some guy in a wheelchair; hardly able to move. He hadn’t invested his money well and didn’t have much to support himself and his family. Talk about changes in identity!
He ended up
going to a therapist who was also in a wheelchair. Session after session, Teddy
showed up, but finally came to the conclusion to end his life. His therapist
told him that he had a moral obligation to tell his family his decision, and
Teddy agreed to have one last session with all of them there.
When the time came, his family begged him not to take his life, but Teddy was adamant he was not going to change his mind. On the way out the door, he said to his therapist, “Well, I probably won’t see you again, so good-bye”.
therapist hung on to the word “probably” and then suggested the most surprising
thing: that he set up a time for his family and close friends to get together
and stage a funeral for him, during which time Teddy would be covered with a
sheet. He was not to say a word while everyone spoke about him as if he were dead.
everyone finished, the sheet was lifted and he said, “I want to live”.
He then concentrated
on building up his strength and because he was able to lift his arms, he could
exercise his lungs and was eventually able to sing.
who hadn’t been in a wheelchair that long himself, said, “saving his life was
like saving my own”.
I love this
story. Not so much because he went on to find fame and fortune again, but
because he took his suicidal thoughts as far as he could without actually playing
it out. This unorthodox ritual is finally what it took to turn him around and
give him the inspiration he needed to find purpose in his life again.
what his friends and family told him that changed his mind? What would I say to
a loved one in a similar situation? Why hadn’t their desperate pleadings in the
therapy session make a difference, but what was said in the funeral did. What
would I want to hear if I were playing dead?
What would you need to hear to help keep you going in the worst of times? Can you tell yourself these things now? How do we accept the unacceptable in our lives? What abilities do you still have, and what can you do to continue to develop them? Can you find purpose and meaning in your life just the way you are? What do you value about yourself? Can you ask your loved ones now what they value about you, what it is they would miss if you were dead?
too, reminded me of the book Tuesdayswith Morrie, a true account by Mitch Albom
(1997). Morrie was Mitch’s mentor who ended up having a terminal illness.
Morrie decided that he wanted a memorial service while he was alive, so that he
could hear what it was that people loved about him. His thought was: why wait
until I am dead when I can’t hear what they say?