New Chapter, Joyous News!

21 Monday Feb 2022

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Much time has passed since I have posted an essay here on Visions of Song! Some time ago, I shared my thoughts about living with chronic cluster headaches (trigeminal autonomic cephalalgia), a devastating experience of facial nerve dysfunction. I have traveled the country, following leads for novel approaches to care, and have participated in clinical trials through Yale University.

For more than four years, I have lived with this condition. It has affected me in many ways, both emotionally and physically. Staying hopeful is difficult at times, but essential.

It was with the greatest astonishment, then, that I entered into a serious relationship. He and I have been dear friends with for many years. We realized that we had new feelings for each other, though there were many things we needed to think about, in order to move forward.

Orrin is a remarkable, kind and wonderful person. A key question, considered at length, was: could I be a good partner, with the toll that my condition has taken on me? I am still Deb: loving, generous, intelligent, and creative. Nevertheless, I am not nearly as patient as I used to be. The daily grind of doing all I can to “keep it together” and often failing, becoming astonishingly emotional over things that I might have readily let roll off of me in the past, is distressing. I can see it happening, yet I don’t always have the inner resources to be calm, collected, and fully express my wisdom and compassion. This is hard on both of us.

We have decided that the kind of challenges we’ve faced over the past couple of years are things we can withstand, and which we can work on together. We are certain that we love each other very much, that we can be good for each other, and a help to one another.

It is this introduction that leads to an exciting and wonderful announcement: Orrin and I shall be married in the coming weeks. We will be able to share it with a small gathering of family and friends, and look forward to having additional celebrations with other friends and loved ones in the future.

Please send all your prayers and hopes and care our way!

With love and affection.

Chronic Pain – Part ONE

26 Saturday May 2018

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Grateful for the opportunity to guest blog for Hearing Elmo. This blog addresses many topics beyond hearing loss.

Hearing Elmo

Welcome to guest blogger, Deborah Marcus, long-time friend (sister), fellow advocate and writer, and professional photographer. It is always great to have guest bloggers on Hearing Elmo because although I have lived with disability for 27+ years, I do not and cannot understand chronic pain conditions as it is not something symptomatic of my own challenges. I have always been thankful for that — for one thing I am a wuss. I have loved and admired Deb for a long time, in part because I consider her a warrior woman who DOES live with chronic pain. This is part ONE of a multi-part posting. Follow up posts in the future will link to this one so that her story chapters will remain connected.

What persuades me to step back from the ledge? What worked yesterday, today, what will work tomorrow? Those who live with chronic, severe pain or illness are familiar…

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Dollar Store Rose

21 Sunday May 2017

Posted by in earth, Happiness, healing, nature, recovery, Spirituality

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2012-06-30 Dollar Store Rose Brigitte VanMeter from son Nicky

I have friends who keep a nice yard and garden around their home. Lots of pretty flowers and shrubs, and a growing vegetable garden. In the front yard, at the end of a fence in a semi-sunny area stands a solitary rose bush. Each season it shows off its yellow blooms with their delicate, pleasant scent. I asked about this rose bush one day. Why just the one? Why over there? I learned that this full rose bush started as a little plant in a small planter, a gift from their son—from the dollar store.

A sweet gift from a loving son who didn’t have much money but wanted to give his mom something for her birthday. I got the sense that no one really expected much out of it, but it was a nice gesture, nevertheless.

A rose bush from a dollar store? Who would have much hope for it, this plant that likely had a less than ideal start in life in a market that offers high volume and oftentimes lower quality for rock bottom prices? I can just see it, crammed in with thousands of others, no special care given to this one. Many would not have made the cut to the truck, let alone all the way to market.

There it was, though, and someone made the selection and brought this one home as a gift. It was appreciated, and planted, and given healthy soil and a little sun and room to blossom. It responds by offering up its beautiful self, year after year.

I think about this a lot. Every time I see it, its lush flowering, I am filled with hope. It’s like this with people, too. Even if the start was far less than ideal, when we give or are given a little room to grow, some appreciation, the nutrients we need to be healthy, we can blossom. I am grateful to those who have offered me these things.

Bloom on.

One year later, reflecting on MDSA

29 Saturday Apr 2017

Posted by in abusive relationships, healing, recovery, sexual abuse, Spirituality, Uncategorized

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For the past two years, I have attended a weekend retreat in New Jersey in the month of April with Making Daughters Safe Again (MDSA). Dr. Christine Hatchard is a practicing clinical psychologist and the heart and mind behind the opportunity for women like myself, who are survivors of mother-daughter sexual abuse, to have a safe space with skilled staff to do the hard work of processing and healing. For most of us there have been next to no opportunities to come together with others who understand the impossible inner conflict of having been sexually abused by the one person we ought to be able to turn to for love and protection, no matter what else is happening around us. The need and desire to love our mothers, the deep wounds, the damage from being violated, having our boundaries shattered by them, there is no ready way to reconcile one with the other.
I have written a bit about my impressions and experiences at the retreats in 2015 and 2016. This year, I did not attend, although I was warmly invited and told that I made important contributions to the group each year. That was so nice to hear! It was purely a matter of practicalities—time, mainly, and some upcoming plans—that made me decline the invitation this year.
I picked up my mail at the post office yesterday. Among the AARP magazine, the junk mail, the bills, the note from a friend with information about a lovely garden to visit in our area, was an envelope that had handwriting that looked familiar. As I opened the folded card inside, I remembered: at the end of the retreat, we each wrote a note to ourselves. We were told that if we were able to attend the next year, we would open them at the retreat, and if not, they would put them in the mail to us. The message began simply enough: One year past your second MDSA retreat. What do you hope to get from this year’s retreat? If you are unable to attend, you’re finding this in your mailbox. How can you honor your process reflective of what you achieve through the retreat?
Then, this: What is still difficult?
I took a few seconds to orient myself to what I was looking at, and then I found that the answer came in a heartbeat: trust.
One of the most important things I’ve come to realize is that when I take apart all the pieces of my story, the difficulty with staying connected to people, the marriages, including one spouse who I can say without hesitation is not at fault for the failure of the relationship, the struggling with really letting people know my heart, at the center of this is a tremendous difficulty, even an inability, to fully trust. Trust process. Trust a person. This is hard for me to explain. It is not that I don’t think that I have people in my life who are trust-worthy, because I do. It’s not about them.
It is heartbreaking, really, to have tried for so long, and to see that there is a fundamental breakdown in me. I can love, and I can help, I can appreciate. I can even let people help me (sometimes). Trust is something else again.
I’m on a path of reconciling this fact of my existence, and finding ways to let people in and take real risks. I want the people who love and care about me to know how much it means to me, even as I struggle at the core with trust.
Baby steps, but knowing and shining light on these things is a help.

What Matters Most

17 Saturday Sep 2016

Posted by in camping, Happiness, healing, nature, recovery, Spirituality, Travel, Uncategorized, work

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2016-09-11-10-46-34About a month ago, I attended a day-long training at one of my part-time jobs. I had the distinct impression that I would not get a lot out of the time I was certain would be better spent doing my tasks back at the office. I wish I could be more go with the flow, able to remember that I am often surprised by what happens when I stay open to things. I’m not big on group dynamic activities. Whether it’s because of my hearing loss, or my personality, or a mixture of factors, it’s hard to say. I find many of the get-to-know-you activities tedious and somewhat forced and superficial. But I was going to be there all day, so I decided I would make the best of it.

Several of the participants brought activities to share with the group that they have used in their work in substance abuse prevention to engage others in dialogue.

They all had some measure of meaning to me, and I could see how many could be utilized in different settings.

During one activity, we formed a standing circle, and each of us was given a sheet of paper and pen or pencil.

The activity went as follows:

-Write down six things that are exceedingly important to you. Do not include your family or your spiritual or religious beliefs.

-Cross out three you could let go of before the others.

-Pass your paper to the next person, and that person shall cross out one of the remaining items from your list and return your list to you. You now have two items remaining on your list.

-Cross out one item, leaving one remaining item on your list. The thing that is most important to you after you’ve made your list of six, crossed out three, dealt with someone else crossing out one item.

My list started out with:

-Independence

-Friends

-Camera

-Passionate nature

-Food

-Car

I removed, initially, food, friends, and camera. The person next to me removed my Independence, leaving me to choose between my car and my passionate nature.

It was clear to me that the car would have to go.

When all was said and done, I found my passionate nature to be so important that I would do without all the people and things that make life rich. I understood in that moment how my sense of self is tied up in that quality.

What is a passionate nature? For me, it is the life spark, the reason for being and caring and hoping and working and making every sort of move in life. When it is flagging, when the flame feels suffocated, I am not well. My mood is irritable, I retreat, and I struggle with caring about…everything.

A few people expressed how it made them feel to work through such a priority list. I stayed silent. When the leader of that activity started collecting the papers from everyone (to throw away) I told her that I wanted to keep mine.

I got a high five. J I’ve been thinking about it ever since.

Last fall, I quit my full-time job and spent two months traveling around the country, seeing old friends, meeting new ones, spending time in nature, in the country, in the towns. Seeing sights, enjoying delicious food, eating over a small camp stove when I spend nights under the stars. I returned home with a drive to create a life space that made sense to me at this stage of my life. I struggle financially, but it’s more important to be able to continue to create that space than to be “secure”. I have been busy with a couple of jobs, one I really enjoy, the other has proved not to be a good fit and I will need to make some changes around that. Overall, it is good and right to stay focused on creating a life that is in alignment with what matters most, what feeds the flames of the passionate nature. That is how I can be at my best to myself and to my community.

2016-09-11-07-27-54

 

 

Why Wait?

09 Thursday Jun 2016

Posted by in camping, death and dying, earth, Happiness, healing, nature, recovery, Spirituality, Travel, Uncategorized

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2014-10-02 pond swampy Sandhills off Hoffman Road“We never know how many tomorrows we have left: eat dessert first!” “We plan, God laughs.”

The notion that we shouldn’t waste time because we have no idea when ours will be up is all too familiar. We’ve heard it, we’ve said it. Often, it’s a loss of a loved one, or the abrupt change in personal status that makes us take a fresh look at our lives. When my father died in 2013, and a dear friend died a mere 11 days later, I experienced what I’ve just recently heard described as “zombie grief”. I remember trying to describe it to some friends, that sensation of being nearly paralyzed. I was sure, I said, that it was the body’s way of preventing one (me) from doing anything drastic. After a while, I was able to move again, but I struggled both physically and emotionally. Only in relatively far retrospect did it dawn on me that I was depressed, grieving. I felt a great deal of anger, and in a way, it was refreshing, in that I felt freer to say “no”, and I did simplify my life somewhat. I stopped giving so much mental energy to people who took my energy but didn’t replenish it. I realized that changes that had occurred in my work situation needing changing once again. I planned for my departure, taking a two month hiatus and traveled across the country, enjoying plenty of time alone, visiting friends old and new, camping, and doing a little creative work through writing and photography. I returned to North Carolina, and struggled to find a balance of work that would be meaningful as well as pay bills alongside my desire to have some flexibility to do the other things that are important to me. It has not been easy, and still needs some adjusting, but for the most part I am glad for where I am with that process.

A week and a half ago, I had a couple of biopsies done on the sole of one foot. I had been concerned about the appearance of small to medium markings that had not always been there. My father died as a result of metastatic melanoma, which coincidentally appeared on the sole of his foot, so I’d been quietly terrified that those biopsies were going to come back as melanoma. I did share this concern with a couple of friends, but for the most part said nothing. I told one friend that if the report showed melanoma of the type that my father had, there is really nothing to be done about it and I would plan accordingly. I thought for just a moment and said “why am I waiting to find out if I have melanoma before deciding to plan accordingly?” Although I continued to wake up each morning wondering if today would be the day I’d get the bad news, I also spent a lot of time thinking about how important it is for me to continue to work towards ensuring that what I devote my time and energy to is more and more in alignment with those things I hold dear.

This afternoon I got the relieving news that I should keep an eye on things, but there are no high alerts at this time. I am thankful. I also hope I have the capacity to keep my eyes towards those priorities and avoid the trap of complacency. I aim to keep things fresh, and not be afraid to shake life up as I did in the fall when I quit a job that offered a modest salary with those much-coveted benefits in exchange for days and days of adventure, exploration, time with friends, new experiences, another kind of self-confidence, creative energy, and lots of “I wonder what today will bring?” mornings.

Eat dessert first!2014-09-23 dessert first Roccio2014-08-25 torta asadaJune 2016 off 109 trailhead troy nc area

Stepping Lightly

27 Sunday Mar 2016

Posted by in death and dying, earth, healing, nature, Spirituality, Uncategorized

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3-26-16 at Zoar cemetery bluetsAs I walk through the old Zoar cemetery, down in the country, I step carefully around the headstones, trying to read what is written, though it is often impossible to make out names, or birth and death years. The stones, covered in lichen and faded by time, have a strange beauty, as those who love cemeteries can appreciate.

It is approaching middle springtime in the Piedmont, when a cold snap can threaten the initial bursts of enthusiasm from the early blooming plants and trees. Today, the grounds of the cemetery are virtually blanketed by bluets, a wildflower species that often reaches no more than one inch in height. The blooms are small and delicate, and they are usually gone by early summer. They are a treat for the eyes after a winter with little color on the ground. So I step lightly around them, around the headstones out of respect for the deceased, and around the delicate blue, white, and purple-tinted blooms of the wildflower with the same sort of reverence. As I do so, I cannot help stepping on the moss, the grasses, the smaller rocks that are everywhere in the cemetery. For a moment, I attempt to step around some of the more interesting (to me) combinations of ground cover. The more I do that, the more I have to try to avoid squashing with my hiking boots. It pulls me to a standstill as I consider that I have been showing favoritism for one or another plant. Why? Because I think it’s pretty, or delicate, or fleeting. But what of the strength and character and subtle beauty in the wild grasses, the moss that stay green year-round, growing plush and vibrant at different times of year, but always there, an important part of the ecosystem? Why dance among the little flowers while walking all over the rest of the earth? I am troubled by this, because if I conclude that there is just as much reason to avoid squashing the other plants among the headstones as there is to avoid damaging the pretties, well then, where do I walk? Should I even be there? Where is it OK to walk, to step all over, to squash, how is such a  decision made? Do we intuitively know that no, we have no right to do damage, but since we live on the planet we have to make some decisions? We say well we should never do such and such, but we can sometimes do this and that, but other things, well, that’s just the way it goes, buddy.

There are a few of my friends who have heard me say that in the past couple of years, I’ve gone from being the friend-who-brings-beautiful-flowers when she visits your home, to the one who cannot stand the thought of cut flowers, flowers torn from their natural (or created) habitats to be put in water in a vase on a table. I suspect it comes from having spent a ridiculous amount of time over the past several years, wandering back roads, looking closely, deeply and intimately, at blooms as they run through their life paces, on trails, roadsides, and in deep woods, that I feel like to cut a flower for the express purpose of putting it on a table for a few days for all to admire is an unnecessary assault on the plant. Let it be! I’ll bring you a bottle of wine instead. J So, how different is this feeling from wanting to protect all living things? Why do I struggle with the idea of giving up meat more than I do giving up flower bouquets? Selfishness, basically. I hold that there are ethical ways of letting live, and killing, animals for human consumption and I try to make choices around that as much as possible. Is it dancing around the wildflowers again? Yes, in a way. I’d go mad if I were to pay that much attention to my every move, every moment of each day. Yet it feels a spiritual illness not to pay attention, too. Working towards balance, every day.

early spring moss growth Zoar cemetery (2)2016-03-26 Zoar groundsPhoto credits: Deborah Marcus

Love What You Do

18 Thursday Feb 2016

Posted by in death and dying, Happiness, Spirituality, Uncategorized, work

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magnolia image (3)

Note: this essay is a reflection on journal notes scribbled back in July 2015.

My friend Amy had sent me a Facebook message, catching up after our being out of touch for a little while. I was dealing with the trigeminal neuralgia and other chronic pain issues that I try my best to manage and then ignore as much as possible, but which have impacted my life. Apropos of nothing, she wrote: I just want you to be happy (with lots of exclamation points)! It’s a lovely sentiment, really. It got me thinking about a lot of things, especially, you know, what is happiness? I can remember—sometimes it feels like I was still in high school, but it’s probable it wasn’t until I went off to college, having taken an introduction to philosophy class during freshman year, when I was introduced to a manner of philosophical questioning that has helped to shape how I think about things ever since–an experience of walking with my dad. Walking and talking, my memory is that we were on Fifth Avenue, walking along Central Park in New York City.  At some point, I decided to muster the courage to ask him something I’d never discussed with him. I can’t recall why I had this question, but I did and I asked: Dad, are you happy? He looked at me and said something like “I don’t even understand that question. What is happy?” I don’t remember every detail of what he said but I remember the essence of his response. Which, if you knew my dad, you’d know that I’m telling you the truth. He said that happiness it’s not some sort of amorphous, fleeting thing. I’m happy with the things that I’m doing in my life, and I feel productive. What more can anybody ask for? This response was so Dick Marcus, quick and pragmatic. It was not his inclination, as I came to understand better much later in life, to think about things in that way. He wanted to know “are you doing OK? Are you doing work that you love? Can you support yourself?” He didn’t even talk about money that much with me, it was sort of a given that it was important to be able to support oneself. He spoke more about are you enjoying what you’re doing? Are you productive? Always, always, are you doing work that you love?

This started out as a philosophical consideration, a search for some definition of happiness. But I see that it becomes for me about feeling productive, enjoying my work. For everything that didn’t go right in my father’s life, for every mistake he made—and he made mistakes—he was also a loving person, and he lived his message. He loved his job. He was retired from the NYPD for more years than he was on the job, and it was so much more than an affiliation for him. He loved his work. Even on days when the system drove him nuts, he loved what he did. He believed in what he did.

It’s a point of reflection for me, because having made a long transition from my previous work, having wondered deeply about why I am here and what is my purpose, my feeling is that I shouldn’t be spending tremendous amounts of time doing what I don’t love, and which I don’t particularly believe is serving anyone much good.

Which leads to my next questions: what is “work”, what is “good”? I’ll get around to that after a while. For now, it makes me (deep breath) happy to finally understand why it’s essential to make it a priority to always, always, do what I love. If I steady my sights on that, I’ll keep my bearings, be of the most service to others, and have the most energy and enthusiasm possible in all my endeavors. If this resonates for you, take it with you.

Three years after my father’s death, he is still teaching me important things.

Life Lessons Over Lunch

16 Saturday Jan 2016

Posted by in Cochlear Implant and Hearing, sound, Uncategorized

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cam-prof-ci-freedom-sound-proc300x300

“I have the same problem with understanding conversation in a noisy environment.”

I met with a friend over lunch yesterday. We’ve known each other for at least 4 years, and our visits usually take place in one noisy restaurant or another. I enjoy her immensely, and we’ve talked about many different topics over the years. She has known from the start that I am deaf and hearing with bilateral cochlear implants. I have periodically made reference to my hearing in the context of one thing or another, but at lunch, while discussing the search for employment, it took on a different tone. Ultimately, it taught me old lessons through a new lens.

It is immeasurably difficult to explain adequately what it is about my struggle to filter out noise in order to hear speech (conversation) that is different from the struggle of the person who has difficulty hearing in noisy environments but has otherwise normal hearing. My friend asked me if I’d consider working as, say, a waitress in the bar and grill we were sitting at right at that moment. I proceeded to explain that though I’ve done that sort of work in the past and am not opposed to it in principle, I probably would not pursue it because a key aspect of the job is to take food and drink orders and I cannot count on being able to reliably understand all the details of the order provided by the customer. The background music, conversation around us, the overall noise level creates significant challenges. Even if I were to be successful most of the time in not needing a lot of repeat information or making a lot of errors, I am aware from experience the level of cognitive fatigue I would endure simply from the kind of intense and focused listening and lip reading that would be involved. I know that not only would that exhaust me physically, it would exhaust me mentally, and if I were to need to do other intense listening activities outside of work, my mood might be altered to the point that I would become irritable and unable to modulate my responses to external stimuli ONLY because of that cognitive fatigue. It would become a quality of life issue.

I tried to say all that face to face, but I don’t think I got it all out, nor do I think it would have made that much difference. Why? Because my friend has only her own experience, which is to struggle with hearing conversation in a noisy environment as a normal hearing individual. That’s her reference point and she cannot be expected to relate to a completely foreign experience, i.e. to hear electrically with bionic technology. One of the things I started to tell folks I mentored through the cochlear implant process is that I no longer spend a lot of time trying to describe what it sounds like, initially as well as in later stages, to hear with cochlear implant technology. It is not possible to understand unless you’re hearing with it yourself. The issue of hearing in noise as a hard of hearing person who wears hearing aids is somewhat similar. We use the same language to describe it, yet again it is different from my experience with cochlear implants.

I also took note of the fact that I was becoming somewhat defensive. I took my friend’s insistence that I can do this, that everyone struggles with the same problem, as an attack on my ability and willingness to pursue all reasonable options for employment. We discussed this, and she was able to help me see that she was just trying to understand. I appreciate her curiosity and willingness to stick with it all the way through. Many will not even care enough to try. However, it really is not something that is entirely possible to resolve. The message for me is that I must continue to build on my internal strength, to know and love not only my strengths but my limitations. Good life lessons over lunch.

Photo: cochlear.com