Victor

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.

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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)

Belle by Al Green (producer, 1977)

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No Separation

 

If you think you are

not the drunk at the post

office reeking of alcohol

and loneliness, you got

another thing coming.

Pain is pain.

Nobody wakes up one day

and decides to be homeless

and carry around a bottle.

What happens in that space

between the precious baby

and the stumbling man?

If there’s one thing I know,

even though at times it

may seem otherwise,

is that there is no such

thing as “us” and “them”,

and until we realize that

there will be no peace.

So lend a hand, a smile,

some money, sign a petition,

say a prayer, tip higher

if you can.

Each act helps us yield

to the simple truth that

there is no separation

between me and you.

No one is going

to come along

and save us from our

own undoing but ourselves,

interconnected reflections

of each other, each of us

a part of the holy web.

                        ~ Maluma

 

 

Cari

Cari Looking to the Right (2)

I walk into Cari’s room. The lights

are dim and the TV is on. When she looks

up at me from her recliner, I notice she is

squinting.

“Oh. Migraine”, I say, keeping my

words to a minimum.

She sighs. “Yup”.

“Again”.

“Yup”.

“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:

 

My Rock

 

You are my rock

not my hard place.

I lean back on your

solid stone so I can

feel the sun on my

face and the breeze

on my skin.

You are an artist.

You take the pieces of me

that are broken

– shattered shards –

and make them into

stained glass

the light singing through

all of the colors

not leaving even one of them out.

Cari and Maluma Peaceful (2)

 

Another Excerpt from the “Book” I Never Finished: Chronic Illness and PTSD

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!

Here are some of the classic symptoms of PTSD:

Emotional expressions

irritability, angry outbursts, guilt, shame, despair, disgust, anxiety, panic, nervousness, sadness, loss, depression, and overwhelm

Overall symptoms

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.

Movie Review

Movie: Away from Her – synopsis by Google Search

“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

My Offer to You

Would you like to have my poetry books?

Please comment if you are interested in receiving one or both of my books at no cost. For more details and to arrange shipment, I will use your contact information from your comment.

An excerpt from my poem “Savior

… “a small bird whose body

I could not see, saved me.

I sat in my recliner

with all my complaints,

when this tiny chirp

burst into the air.”…

 

Excerpts from my poem “Breakthrough

…”go through this messy and blessed life

thinking we can clean it up

and make it orderly”…

“and we don’t have a lot of say in the matter.

But there is one thing we can do

when grief sails by”…

Accepting the Unacceptable

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”.

            His 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.

            After 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.

            His therapist, 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.

            I wonder 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?

            This movie, too, reminded me of the book Tuesdays with 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?

            Would you want to do the same thing?

Would I?

Book Reviews and Suggested Reading

I’d like to recommend a few books that have resonated deeply with me.

  1. Finding Freedom in Illness by Peter Fernando From the point of view of someone with chronic illness, Fernando uses meditation techniques and contemplation to explore the physical, emotional, and mental difficulties that often come hand-in-hand with chronic illness. Including personal stories, he emphasizes self-kindness as a way to relate to the negative self-talk that can arise with an on-going illness.  He encourages us to be present with all that surfaces in the mind and body, including an entire chapter dedicated strictly on pain. You can trust what he is saying, because you know by his words he’s been there, unlike many health practitioners who haven’t. This is a book to come back to again and again, to remind you what your true worth is. It feels like a real friend.
  2. The Alchemy of Illness by Kat Duff – Review on the back cover of this book: “Illness is a universal experience. There is no privilege that can make us immune to its touch. We are taught to assume health, illnesses being just temporary breakdowns in the well-oiled machinery of the body. But illness has its own geography, its own laws and commandments. At a time when the attention of the whole nation is focused on health care, Kat Duff inquires into the nature and function of illness itself. Duff, a counselor in private practice in Taos, New Mexico, wrote this book out of her experience with chronic fatigue syndrome, but what she has to say is applicable to every illness and every one of us. For those who are sick, this book offers solace and recognition. For those who care for them either physically or emotionally, it offers inspiration and compassion. Finally, this fresh perspective on healing reveals how every illness is a crucible that tries our mettle, tests our limits, and provides us with an unparalleled opportunity to integrate its lesson into our lives. “Published by Bell Tower, an imprint of Harmony Books, a division of Crown Publishers, Inc.”, 1993]
  3. Grace and Grit: Spirituality and Healing in the Life and Death of TREYA KILLAM WILBER by Ken Wilber – Review on the back cover of this book: “Grace and Grit is the compelling story of the five-year journey of psychologist Ken Wilber and his wife, Treya Killam Wilber, through Treya’s illness, treatment, and, finally, death. Ken’s wide-ranging commentary-which questions both conventional and New Age approaches to illness-is combined with Treya’s journals to create a vivid portrait of health and healing, wholeness and harmony, suffering and surrender.” Shambhala Publications, Inc., 1991