Author Archives: debintheuwharries

Gifts Postponed

30 Wednesday Dec 2015

Posted by in death and dying, healing, Spirituality, Travel, Uncategorized

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gift to Brueilly from Dad January 2013

Goldie, as some of you know, is my 2008 gold Honda Civic. When I moved to North Carolina from Colorado in 2009, I pulled into town in a blue Subaru Forester towing the smallest U-Haul trailer available. Soon after I arrived, the transmission completely went out on the Forester. I couldn’t afford to replace the whole thing, so I had to let it go and get another car. That’s Goldie. I didn’t name her for a long time, and didn’t say it out loud until after the high drama of April 2015. I went off the road on a dark, rainy night, in either a hydroplane or bump in the road event. I was airborne, spinning 180 degrees and down a steep embankment, getting tangled up in some heavy brush and missing the trees below by inches. Goldie was still running! I got stuck trying to drive back up the steep hill and needed to be towed to the road, but I was able to drive home from there. That was the night I decided that I should appreciate her a little more, and call her by her proper name.

Goldie and I have been through a few exciting events. In the fall of 2012, I was hit on the passenger side by a young man who was in a hurry to leave the bank parking lot. The force deployed the airbag, which tore out the fabric on the car ceiling. That and other damages took Goldie away from me for close to two months. I finally got her back, only to have the engine overheat a week later. What?!? I had her towed to the body shop, because I thought it had to have something to do with that accident and all the work they did. No, they didn’t think so, and so I towed her over to Brueilly Auto Repair. Steve Brueilly had been recommended to me a couple years prior, for minor work. My friend told me that he was highly qualified, and just as important, he was trustworthy. If he can help you out he will, is what I was told. The next day, Steve called me and said “you’re not going to like this. You have a cracked engine block. It costs upwards of 4,000 dollars to replace, and there can be a lot of damage from the crack. I was devastated. I didn’t have that kind of money. I envisioned myself paying two car payments: one for the Civic, which I wouldn’t be able to repair, and another for a car that I would have to buy so I could get around. I called my dad to make sure that this report about cracked engine blocks sounded accurate. He groaned and said yes, it’s very expensive to replace. I decided to just think about it overnight. Steve called me the next day, saying that something seemed strange to them there, so he had called up to the dealership in Greensboro and had them run the VIN number. Turned out there was a recall on that engine block!  He told me to get it up to the Crown Honda in Greensboro, and they’d get her fixed up.

I was in a shocked state, but thanked him profusely for following up on this for me. If he and his staff hadn’t taken the time to figure out what was going on, I would have been in some hot water. I called my dad, this time with a remarkable update. He was delighted and relieved for me, and heaped praise on Brueilly for his consideration and help. “He could have just told you the cost for the job, take it or leave it, and not given it another moment’s thought. He’s a mensch!”

This second event, with the engine block, actually spilled over in 2013, mid-January. Dad had been receiving monthly chemotherapy since October, in an attempt to shrink a liver tumor, a metastatic event from a primary retinal melanoma. The retinal condition had been treated a few years prior, and he had been given clean bills of health at all follow ups with the eye specialist, but it wasn’t really gone from his body. By mid-January, he was getting ready for the fourth and final treatment, with the plan to see the oncologist in February to review whether the treatment had the intended effect, and possibly bought him some time. He expressed some pain and fatigue at that point, but we are certain in hindsight that he was not telling anyone exactly how much pain he was in. He kept about most of his usual daily activities. Dick Marcus was not one to lay around and watch television, but one day I called him, it was a weekday, in the afternoon, and he said “Honey, I’m not feeling well. I’m lying in bed in the middle of the afternoon. You know that’s not a good thing.” It broke my heart, but he was not to be coddled, and it was the only time he alluded to such discomfort. Even then, he thought it was more the side effect of treatment that was getting him down than progression of the disease.

At the end of January, I received a piece of mail from him. There was a note that read “Give this to Brueilly, with my thanks. He might get a kick out of it. Love, Dad” In the envelope with the note was a plastic card, one that he received copies of every year as a member of the Retired NYPD Lieutenants Association. I put it aside, thinking I would stop by one day soon and deliver it to him. Two weeks later, I was flying to New York City to say goodbye to my dad, for the treatment had not worked, and he was gone within days of the oncologist’s report that there was nothing else to do except provide comfort care. Soon after his death, I pulled out the envelope with the card intended for Steve Brueilly. I didn’t want to go and see him and give him the card. I was afraid I’d burst into tears, unable to finish. So, I put it aside, thinking “I’ll get over there soon”. I’ve been there since for auto care, and I’ve never thought about that card. This morning, I was organizing some paperwork. I saw my father’s handwriting on an envelope, and curious, I pulled it out. I could feel the outline of the little plastic card. I read, again, the note, and held the card in my hand. I’m keeping it with me in my glove compartment. Hopefully I will remember to pull it out and present it to Steve the next time I’m over at the shop. I do think he’ll get a kick out of it.

http://www.brueillyautorepair.com/

 

 

What was the Best Part?

20 Sunday Dec 2015

Posted by in camping, Spirituality, Travel, Uncategorized

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Since I’ve been back from my nearly two month journey, the most frequently asked question has been “what was the best part?”

Often, I would preface my answer with another question: the best part of which part? The tent camping, the seeing people, the being alone with my thoughts, the food, the sightseeing–to the extent that I actually went sightseeing, for that was never the intention of this journey.

Although I am able, when pressed, to point out one or another highlight, the more I thought about it, the clearer it became that the whole of it was the best part. The whole, here, is something other than the sum of its parts.

Here is a list of many parts from this journey which are no greater or less than any of the other parts. It was in the process of writing all of this down that I developed another layer of appreciation of the power of being fully present. I am as guilty as any other of losing sight of that quality, of judging, or measuring, comparing, to what-if-ing.

–Selma, Alabama, walking across the bridge, taking in the harsh history, being reminded of the redemptive power of hope.

–Driving for two and a half days across Texas in torrential, sideways rains. After my experience in April, when I hydroplaned and went down into a ditch (likely having hit a dead animal or some object on Highway 220 during the evening and heavy storms) I’ve been anxious about driving during those same conditions, even pulling off the road to wait out rains normally not problematic. I would have lost almost three days of driving had I waited for all the rains to pass, so I was able to get more comfortable driving through heavy rains again. Although I was not doing it at dark, it was pretty good post trauma work as I am now able to drive comfortably during reasonable amounts of heavy rain.

–Staying two night in a motel in Marathon, TX, instead of camping. Ongoing torrential rains. See above. Time to just stop moving, do some writing, communicate, walk around when it wasn’t raining. I got one great day in Big Bend National Park, and that was worth it.

–Big Bend National Park. I could’ve stayed a week and not properly seen it all, but I had a great day with perfect weather and a few nice photos out of the bunch.

–Carlsbad Caverns, wandering down the mile and a half path, slippery with bat guano, to the “Big Room” which is the size of 14 football fields. I’d been there about 15 years ago and wished to see it again. So I did.

–Alamogordo, New Mexico, White Sands National Monument, New Mexico Museum of Space History, crossing the wide open spaces, staying at the cleanest, comfiest motel sojourn over my entire two month adventure (White Sands Motel, the one with the old fashioned lit up sign out front). Good price, too, with a decent continental breakfast. I liked it so much that when I needed to make a huge detour to avoid highly inclement weather on the way back from Southeastern CA, I decided to go back through there so I could stop and rest at that motel.

–Las Cruces and Old Mesilla, New Mexico, with my beeline (chile line?) to Andele Restaurant for my much-missed taste of Hatch chile in a comfort food style stew, a stroll around the historic Mesilla Plaza, all served to add a bit of enchantment to my travels, in “Tierra del Encanto”.

–Camping and hiking in the Cochise Stronghold, Coronado National Forest, Southeast Arizona. This was, in fact, a true highlight. With no perceptible wind and no threat of rain, and a cozy sleeping bag for a 40s degrees night, I was able to enjoy sleeping under the stars in my mesh sided lightweight tent. I hope to return there again.

–Engaging with Humane Borders, Inc. and Joel Smith, operations manager. We were a good match: me, for my desire to understand more about the work they do, and to experience it firsthand, and he, desiring to share this story and this life with anyone showing a genuine interest and concern. It was a priceless experience and I share my experience both in writing (see Borders and Borderlines on this website) and with anyone seemingly remotely interested in hearing about it.

From here, I had to admit that I am more of a social butterfly than I would have people believe! Graciously hosted by the marvelous Michele, I was able to also have great visits with Sara, Susanna, Ken, Bob, and Janet, in and around the metro Phoenix area. Great conversation, food, sightseeing (who knew there is now a reason to walk around downtown Mesa?) over a several day period. I was able to spend a whole day with my dear friend Sharon, with Ken and John joining us for lunch. Sharon was one of the first people I’d met when I lived in Phoenix back in 1990, and we’ve remained friends ever since. We don’t see each other often, but when we do it is incredible how we just seem to pick up where we left off. Leaving from Phoenix, I drove the alternate way over the White Mountains region and had a lovely visit with Becky and her husband Scott. Again, conversation, great food prepared by Becky, a walk around a nearby lake, and a good night’s sleep, had me on my way to Northern New Mexico.

I stayed for a night with Teresa at her home in the Barelas neighborhood of Albuquerque. It was a wonderful evening and morning of conversation and reflection. She has a wonderful traditional style home, and it was a pleasure to spend time with Teresa, and to just be there in that space.

Continuing north on I-25, I arrived in Santa Fe. I had been to both Santa Fe and Taos in the past, but was unaware that two friends from high school, who’d shared some great times with me over the years, were now living in these towns. Laurie lives in Santa Fe with her teenage daughter, and we had hours to catch up on our lives while I was there. We went out partying a few nights, the first just the two of us to hear her boyfriend, Tom, play in one of the bands he is in around the area. Tom is super, and it was a pleasure to meet him and hear him play in both a more modern music band as well as in a traditional jazz band a couple of nights later. Two of the three nights we went out, Alex, who lives in Taos, joined us. I hadn’t seen either of them in well over 15 years! It was fantastic to see them again. After four days in Santa Fe, Alex picked me up (we were worried about my Civic handling his off-roads, and in hindsight, for good reason) and we drove up to his home above Taos. Alex is a woodworker, and more than that, he can fix just about anything. He built his home on the side of the mountain, off-grid and fully solar. He gave me the royal tour of the area, a mix of scenic wonders and cool bars and restaurants. We spent time with his girlfriend, Janet, who is a sweetheart. Perhaps the best part of the visit, though, was the time we got to just talk about all kinds of things, sitting in his home, listening to music, getting deep into some topics. Those were some very special days, with Laurie and with Alex. Oh, lest I forget: Madrid, NM. A special highlight. J

–Rhyolite NV, Tecopa CA, China Ranch Badlands, Mojave Preserve, Nipton CA, these are some of my favorite spots in the United States, for disappearing off the grid (or nearly so) sometimes for days at a time. I had not planned to travel to California on this journey, but in speaking with Laurie in Santa Fe about the pull this region has on me, and her reminder that it was a lot closer to Santa Fe than Asheboro, North Carolina, I decided to make the 13 drive to spend a few days in the desert. I could and probably should write more about that, but suffice to say it was worth all the added hours behind the wheel to soak in the hot springs pool and wander the desert land. There was one day when the winds were so intense and relentless that I could not keep my little tent up and had to sleep in the car. All part of the experience.

–Norman, Oklahoma is the home of my new friend Laura and her family. Niece to my good friend Beth, she welcomed me on my eastward trek. In fact, Beth’s mom was visiting at the time, so it was fun to see her there and get to know Beth’s family a little better. Laura and her husband own a horse farm. She might be one of the hardest working people I know. After putting in a full day’s work in OKC, she give riding lessons on her farm, and then tends to all the tasks necessary before bedtime. She spends time with her young daughter, bathing and reading and putting to bed, then getting to bed before it’s time to start all over again. A dream comes with much hard work, but she loves what she does. I was also able to have a wonderful visit with my friend Vernice, who lives nearby. We’d only know each other virtually until this recent visit, so it was really special!

–Arkansas, where I was able to stop and pay a visit to the Clinton Center in Little Rock (worth one’s time!) is the home of two friends I’ve only known on Facebook until this trip. Jeanie invited me to her and her daughter’s home for a night, and we had a great day together. Her grandson is the best! The next morning we met up with Jeanie’s sister Margaret and we went out for breakfast together. I really like both of those ladies. At Margaret’s suggestion, I made a quick stop in Fayetteville and walked around the town center. I could see that there were strings of lights all over the trees, and when I saw photos shared by them later of the sight of them all lit up for Christmas, I wished I’d been there a little later in the season. Glorious! Arkansas is beautiful. I need more time there, next time.

–Tennessee was scheduled full. I visited the National Civil Rights museum in Memphis and was glad for the suggestion from my friend Debra R. back in North Carolina. Powerful record of events! I headed that evening to see Ricci and Leigh Ann. They have a beautiful home and made sure I felt quite comfortable. We went to Beale Street in Memphis one night, to make sure I’d get a taste of that classic Memphis scene. From there, I had a number of Tennessee stops: Vanderbilt Medical Center in Nashville, where I was a cochlear implant research subject for a few days, and where I had dinner one evening with Jennifer, Diana, Dennis, and Emma. Such fun! Onward to Chattanooga, where I spent two nights with Ruth and Gary. Always gracious and ever helpful, I was able to bounce ideas off of them for my future planning once I returned home. I visited with Laurie and Steve in Maryville. As always, Laurie and I had some great conversations, and we went for a scenic drive near the Smoky Mountains one afternoon. As I prepared to leave town, I did one of those check-in posts on Facebook about getting my car oil changed. I got a message from Bill D. asking if we might meet for lunch. Such great timing! Bill, his partner Emalie, and I had a wonderful lunch together before I headed out of town.

I was able to enjoy a few more stops in North and South Carolina before heading back for the duration: hot springs in the mountains, an invite to stop by for a plate on Thanksgiving by Eric, a fun weekend in the Charleston area with Beth, Nancy, Steve, Alex, Savannah, and with Carol and Bruce. Then, it was back to the business of discovering what my next life chapter will look like.

It was all the best part.

Sights, Sounds, and Memories

14 Monday Dec 2015

Posted by in camping, Cochise Stronghold, Cochlear Implant and Hearing, death and dying, healing, recovery, sound, Spirituality, Travel, Uncategorized

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2015-10-13 16.19.55I had the great pleasure of hiking and camping in mid-October at the Cochise Stronghold campground, in the Dragoon Mountains within the Coronado National Forest in southeastern Arizona. I arrived late morning, and enjoyed a hike before setting up camp. At 5,000 feet, it gets chilly once the sun sets at that time of year, but the granite walls and sheer cliffs that surround the campground act to reduce winds that might otherwise make tent camping a bit uncomfortable overnight. With virtually no chance of rain, and little to no perceptible wind, I was able to enjoy a rain tarp-free experience, hunkering down into my sleeping bag as I peered through the mesh of my tent and watched the sky darken and fill with stars. At early morning, I was able to view the sky as it lightened and the sun came over the cliffs, the stars fading from view. I shared the entire campground with just one other camper. He arrived about an hour before sunset. I had two thoughts when he pulled in: “aw, I thought I’d have the place to myself tonight!”, and “should I be concerned?” My gut said it would be fine, that he was just camping out like me, and I was correct. We spoke briefly upon his arrival, then went about our respective business.

I had been sitting and eating my dinner when he pulled into the site. As there is no water whatsoever at that campground, I didn’t attempt to cook rice or pasta or anything that would’ve made excessive demands on my water supply (cooking and cleaning). I boiled some water, first for coffee, which I enhanced with a shot of bourbon, and then boiled more water to heat up a food packet filled with a tasty Indian spiced side dish. With that, some crackers and nuts, and the brew, I was set. While I ate, I wrote down some of my thoughts and feelings about the recent death of an old friend. Betty and I met when I was at college in upstate New York. The mom of the young man I became engaged to (but did not marry), we were close for many years beyond that time. I felt like an extended family member for a long time. Circumstance and distance changed things about 10 years ago, but we remained friendly, with my link to her eldest son keeping me abreast of developments when her health took a serious turn for the worse. Pancreatic cancer ultimately took her from this life. She died a few days after I started my journey, days before I arrived at this stronghold. I felt her presence as I sat on the bench, eating my simple meal and writing about her, about who she was as I understood her, and about her influence on my life. She taught me many things about relationships, family, devotion, and the little things that people do for each other to show love. She had a faith in God that I did not fully understand, yet I loved being around that part of her, because I felt like whatever it was that made her so special was intricately woven by that fabric, and I hoped it would rub off on me. I think it did, somewhat.

I heard so many birds calling as sunset came to the campground. Earlier in the afternoon, there were two woodpeckers nearby just having a ball, flitting here and there, banging away at trees, squawking, looking askance, I’d swear, at my feeble attempts to photograph them, to capture a focused shot or two. As I listened to the sounds around me, I remembered how thrilled Betty was for me at the success of my first cochlear implant, the technology that has allowed me to hear again after decades of severe hearing impairment. A musician, it must’ve saddened her more than she let on that I was losing my connection with the hearing world, especially with music. So as I retired to the camp tent for the night, I reflected on how much she meant to me, and how she made me feel like I mattered to her, and how cheered she would be to know that I could hear all those marvelous, musical sounds in the natural world again.2015-10-13 17.27.25

Mojave and Tecopa

07 Saturday Nov 2015

Posted by in Travel

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2015-11-03 15.13.41

Desert. For many, the word conjures up a vast desolate barrenness. Wasteland. Dry, blowing dusty scorching hot days, sans water, no life to speak of, a place that one is banished to, punishment for a litany of misdeeds.

I don’t think I’ve ever viewed them that way, not since I made my first diorama in elementary school, attempting an approximation of the Gobi desert. I remember putting a small hand mirror flat on the floor surface, surrounded by sand obtained from the property we lived on out in Long Island, New York at that time. I was in the 4th grade, I worked with what I had, you know?

I don’t recall exactly how I learned about the Mojave Desert, but I believe my first visit to what was at the time the East Mojave National Scenic Area took place soon after I moved to San Francisco, around 1992. It became a National Preserve in 1994, overseen by the Bureau of Land Management. I quickly expanded my wandering range from there up to the hot springs town of Tecopa and the nearby Amargosa Valley. Death Valley is near to that area as well, but truth be told, I’ve only visited Death Valley once. It’s a marvelous place, but doesn’t hold the sense of magic and wonder I experience in those other two areas in the region.

Over the years, I have visited in all seasons, but I have preferred being there in summer. The air seemingly vibrates in the loud quiet of the summer season. Temperatures soar then, and it’s a trick to camp out. I’ve occasionally caved to the need for an air conditioned night when the nights never dropped below 90 degrees Fahrenheit. I love it best then, when, loaded up with water and salty chips, I have the spaces virtually to myself. Me and the lizards and the very occasional sighting of snakes.

As a result of a planned road trip commencing in early October, I had the pleasure of visiting the area in the fall this year. The winds are, at times, challenging, but I found them exhilarating all the same. I didn’t pull out my camera as much as I would have due to fairly frequent rain alongside that wind, but it was still a marvelous experience. I had one day that I was able to take a hike behind China Ranch near Tecopa. It is a date farm, a veritable oasis in that desert. Behind the farm is open land, what folks call the badlands, which are made available to all by the landowners. It is arguably one of my favorite places on earth.

I had two good friends ask me if I weren’t considering looking for work in the region, and possibly affording myself the opportunity to access the land and the springs that flow at Tecopa all the time. It has crossed my mind on many occasions. Perhaps I will one of these days. I know enough to recognize that living in a place is different than being a visitor. Nevertheless, there is something about these spaces that fit me well. We shall see.

2015-11-03 15.10.58

Borders and Borderlines

16 Friday Oct 2015

Posted by in immigration, migration

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border wall looking to Mexico

While traveling through the Southwest this week, I had the privilege of experiencing glimpses of the work done by Humane Borders, Inc. The main office is located in South Tucson, Arizona, but the humanitarian work that they do requires that they travel many miles from town, near and around the border with Mexico. The day before, I’d met with Joel Smith, Operations Manager, for breakfast, and attended a volunteer meeting later in the day. I had the opportunity to meet Juanita Molina, the Executive Director, and many of the compassionate and passionate volunteers that do the hard work of providing water and basic supports to migrants as they cross the desert.

Well aware that I have readers who take issue with migrants crossing the border and living in the United States as undocumented persons, I offer this: regardless of where you stand on the issue of immigration, one thing is crystal clear: people seeking a better life for their families will continue to migrate here. They will take every risk to their lives to have the chance to improve the quality of life for their loved ones.

The efforts made by Humane Borders and their counterpart humanitarian groups is driven by a basic principle: to do what is morally right. Knowingly turning a blind eye to people dying of thirst in the desert is not an option. Founded in June 2000, their mission statement reads:

“Humane Borders, motivated by faith, offers humanitarian assistance to those in need through the deployment of emergency water stations on routes known to be used by migrants coming north through our desert. Our sole mission is to take death out of the immigration equation. Our water tanks are on a combination of private and public lands. In all cases we have permission to locate our water stations on these lands in writing from the landowners.”

The leaders at the organization have done incredible work in building relationships with the enforcement agencies that have their own set of rules to follow with regards to migrant activity, including the U.S. Border Patrol, Arizona Game and Fish Department, among others.

I spent a day on the road with Joel, who needed to check several water stations and change out flags. The blue flags are erected high so that those who are walking through the desert are able to locate the water stations. Even for those who don’t know of the stations, the flags can act as markers for those who may walk towards it seeking assistance. The travel is largely off road once out of town, and the routes are steep, pitted, narrow, and rocky. One must have a solid 4×4 vehicle and a good command of its handling to get to these remote locations. Consider, then, what it’s like to traverse the same routes on foot, with little resources to sustain oneself. Imagine the determination that drives a person forward in the face of these challenges.

I became privy to a wealth of knowledge on the history and culture of the region, and the nuances of engagement, thanks to my guide. After checking some water stations and swapping out a well-worn flag at one site, we continued on and reached the border fence. It is, frankly, a monstrosity, a huge blight on an otherwise gorgeous desert landscape. I look in the direction of Mexico, through the fence, and see open spaces and a wide range of cacti, plants, grasses, and birds. I turn my back to the fence and see the exact same scene, a virtual mirror image. In this place, it becomes ever more apparent how arbitrary the line is, how absurd the effort, for the fence does not do the job that it was designed for: it does not keep people from seeking a better life.

On the last portion of the run, where we needed to pick up some water barrels that needed to be swapped out from a site, we traveled up a steep incline and into view came a rugged outpost of sorts. This was the safe station set up by No More Deaths, another humanitarian group in the desert which works to stop the deaths of migrants in the desert. They are an official ministry of the Unitarian Universalist Church of Tucson. I introduced myself to two young men who were organizing activities, and took a walk around the space. All the essentials were there for basic living supports. 

As we drove across the desert, we spoke about other things as well, including our shared passion for photography. I noted how beautiful the scenery around us was, and how these are the spaces that I most enjoy wandering and taking photographs. Joel agreed wholeheartedly that though it is, indeed, a beautiful place, “It is also a lonely place to die.”

For more information, including ways to support:

http://www.humaneborders.org/

http://forms.nomoredeaths.org/en/

border wall with Joel Smith

No More Deaths welcome sign up on the hill

Days Ahead

09 Friday Oct 2015

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Some of you are aware that I made the decision to leave my job last week. It had been time for a change, time to have time to do some of the other things that are important to me. I am on a road trip now, with day three just about under my belt. I’ve covered over 1600 miles so far, some of them through torrential rains. Lots of time to think, and I’ve got a bunch of notes already, but tonight I thought I’d share something I’d forgotten I’d stored under the notes application on my phone. I wish I’d taken a photo after the rains today, it would’ve fit perfectly!

January 2015:

days ahead

decisions

time to get unstuck

new truths expressed

untangling of ties

strengthening what needs bonding

scared

sad

recognition of the path

the fog has lifted

Into The Sunshine: Living With Trigeminal Neuralgia

10 Friday Jul 2015

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trigeminal_neuralgia medicalook dot com

If you were to Google Trigeminal neuralgia, you’d see a number of key features. Wikipedia covers both TN and atypical TN pretty well.

https://en.wikipedia.org/wiki/Trigeminal_neuralgia

https://en.wikipedia.org/wiki/Atypical_trigeminal_neuralgia

Briefly, it is a neuropathic disorder stemming from the trigeminal nerve. It is marked by episodes of intense pain; in fact, it has been described as being among the worst pain known to humans. You know how the doctor or nurse may ask you where your pain is on a scale of 0 to 10? It’s a 12. It is also quite difficult to diagnosis, and often treatment is tried with the hopes that there may be symptom suppression based on particular symptoms in the face, eye, head and ear, rather than there being a specific test to diagnose it. It has been spoken of as “the suicide disease” because of the intensity of pain and the difficulty in managing the condition. It sometimes presents in older patients after a bout of shingles. It can also manifest as the result of physical trauma.

I have some friends who have heard some of my stories regarding physical challenges that I’ve had throughout my life. I have generally adopted an attitude of acceptance and to large extent tolerance of the various issues. One, however, has been such a challenge that I admit to having wondered from time to time if it was worth continuing to live with it. I am not suicidal. It’s just that everyone has their limits, and I was afraid I was nearing mine. I’d been dealing with a particular set of pain issues for so long (since 1998 I sometimes say, but the lesser episodes came even earlier) that I rarely even talked about it. What for? No one seemed to understand how to help me, and while I appreciate a little sympathy as much as the next person, it was way beyond that by the time I took a chance and spoke about it to a good friend, someone who is knowledgeable about oral/facial issues.

I described the severe pain: stabbing, throbbing, burning pain that I had been experiencing since 1998. The first major flare up was so severe that it had me convinced that something was terribly wrong with my teeth in the upper right quadrant. The dentist I saw for evaluation thought so, too. I was told I needed a root canal. I was shocked, because up until that point, except for several fillings in my teeth, I’d never had dental issues. I loved going to the dentist, in fact. The first root canal was done. I was no better. In fact, I felt worse! She advised that it was now the tooth next to it that also needed a root canal. After the third in a row was completed, it became apparent that something else was going on.

Let me stop here for a second. It’s tempting at this point to say what in the world was the dentist thinking? Incompetent! The fact is, though, that it is not uncommon for people who have experienced this constellation of symptoms in the face to be misdiagnosed. There are folks who have had whole quadrants of teeth extracted, because the pain was assessed as needing this course of treatment. Root canals, I’ve learned, are also not that uncommon.

So fast forward many, many years. Years of avoiding the dentist, as I no longer enjoyed getting work done on my mouth. I’d read up a bit and heard about trigeminal neuralgia, but erroneously thought that surgery was the only definitive treatment, and there were lots of risks involved with that, so I thought well, I am going to have to live with it. The episodes came on a regular basis, but usually lasted less than a day, subsiding over the hours. More recently, it seemed to step up its game. The pain would often last for two days or more. Yes, really. I felt like someone was stabbing my eye with a toothpick, and the eye would run constantly, my jaw would feel locked up, and it seemed like the breaks between episodes were getting shorter and shorter. When I finally took a chance and shared this with my friend, she immediately recognized that I was experiencing symptoms that could indicate TN, and I learned that they have some success with anti-epileptics to suppress symptoms. Did I want to try this? I was prescribed a low dose of gabapentin. I felt some slight improvement, but there were still a lot of what I call break-through episodes.

About two weeks ago, after incrementally increasing the dose to 900mg/day, I started to have some severe break through pain. Honestly? I thought FUCK! This isn’t going to work, what am I going to do, and on and on it went. That afternoon, I was eating a snack at my desk at work and I felt a piece of tooth break in the lower right quadrant. SHIT! Now I had a broken tooth, and I was more in a panic that I would have to have dental work than I was about the cost (and trust me, I was panicked about the cost, so you can imagine). I contacted my oral surgeon friend for a suggestion on what dentist to contact. I had not been to a dentist, not once, since I moved to North Carolina in 2009. Scary, I know, but this is how I have become because of my pain experience. I was given the name of a couple of dentists and chose to make an appointment with Henry Killian in Asheboro. He is really wonderful. He listens well, he has been in practice for decades and he understands. I had the longest evaluation I ever recall by any dentist and we came up with a plan. We were both thrilled, too, that my dedicated efforts to good oral hygiene were apparent. I should get a cleaning at some point, though. 🙂

My oral surgeon friend had asked me a question soon after the tooth broke: how are you doing with regards to the trigeminal neuralgia? I said you know what? It was really bad this morning and I was in panic mode. It is not as severe now. It was suggested that the tooth that broke may have been stressing for days or even weeks and could have been triggering the break through pain. This was actually a great reassurance to me, and reinforced for me the likelihood that this is what I’ve been living with for so long. I have not had shingles, but I have survived physical trauma, and it seems possible that there is a connection. I will explore this in further writings in the months ahead.

When I shared part of this story with another friend the other day, she said “I always think that when you’re cranky it’s because of your challenges with your job, but perhaps it’s the chronic pain”. I have been thinking about that a lot lately, actually. How much one’s mood can be affected by chronic pain is something I am well aware of, but I hadn’t turned the mirror on myself. It helps to know.

I’m doing a lot better now. I may have to increase my dose, as I can still feel it wanting to break through, but the pain level is much more manageable these days.

I feel incredibly blessed to have crossed paths with people who understand, and who care.

2015-06-23 20.36.04 (2)

Community and Hope

29 Monday Jun 2015

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Mother Emanuel June 24 2015 photo by Beth Summers

(Services outside Mother Emanuel AME Church, Charleston, SC 6-24-15)

“I stood between a black man and a black lady right in front of the church. Holding their hands in worship, singing and praying together. They are no longer my “black” friends, they are my friends.”

That quote is from a conversation my friend Beth and I have been carrying on over these difficult and remarkable days. In an act of blatant racist hatred, one white man entered the historic Mother Emanuel AME church in Charleston, South Carolina, sat for an hour with a bible study group and then opened fire on the participants, all of whom were black. He killed nine church members, including the pastor, the Reverend Senator Clementa Pinckney.

The city of Charleston, and indeed the whole of the country, has reeled from the impact. The efforts to understand, explain, categorize, this one event have been astounding. There are those who call it an act of terrorism, others who suggest that the killer was mentally disturbed. The collective pain of those who recognize in it how far we have yet to go in this country to experience a deep healing and respect for all regardless of color or creed is palpable.

On a personal level, I immediately wondered what my friend Beth, born and raised in South Carolina, was thinking about what was going on in her hometown. Beth has lived all but a few years of her life in the Charleston area, and takes tremendous pride in being a Southern woman. We are something of a study in contrasts, as I am one of those “damned Yankees”, never mind that I have lived elsewhere than my native New York City for a good part of my life. I am also Jewish, and I am reasonably certain that Judaism is a relative mystery to her. Though we have spoken frankly with one another about many things, in the wake of the church shooting, with the killer’s white supremacist motivation, I wondered what I would discover in my friend, now that her beloved hometown was under a microscope and caught in the high beams.

I think that sharing some of our conversation, conveyed through written messages, does a better job of telling than I could do on my own. Shared with Beth’s permission. Photo credit: Beth Summers

At Mother Emanuel AME church for services in the days before Reverend Pinckney’s funeral:

Wonderful evening! So glad I went. I debated because I knew it would be very late getting home, but it was so worth it. Not in my dreams would I have imagined, even one week ago, that there would be such a gathering at Marion Square. All ages and races gathered together. I stood between a black man and a black lady right in front of the church. Holding their hands in worship, singing and praying together. Yes, they are no longer my “black” friends, they are my friends. I saw a white minister break down and beg his “colored” brothers and sisters to forgive him, and he repented for his sins. A woman walked up to him hugged him and told him “I forgive you”, and one by one most did the same. The outpouring of forgiveness was incredible. There were about 10 different ministers from all denominations, and each spoke briefly. Very powerful experience! So proud of the unity, and proud to be a part of it.

On the Confederate flag:

So, Strom Thurmond’s son, Senator Paul Thurmond, has called for the Confederate flag to come down. I am really shocked about that, as well as about many of the others who are changing their views. It won’t be an easy battle for them. McConnell made sure when it was moved in 2000 that it would be almost impossible to touch it again. But there is hope!

Did I tell you my family has one of the Confederate flags that flew over the Capitol Dome? Yep, about $2,000 was bid for it. They changed it out each day and donors were able to take them home.

(Deb: Wow! That’s incredible. So, where is it now?)

I need to ask Alex. It has to be somewhere in his home. It’s properly folded and encased in a frame, where it belongs, just like the one flying in Columbia. That needs to be placed in a museum.

From the Post and Courier: http://www.postandcourier.com/article/20150623/PC16/150629748/1006/paul-thurmond-calls-for-flag-to-come-down

Reflections on racial tensions in the past, and parallel experiences as an “out” lesbian:

I still recall a day about 20 years ago. I walked into my own church, and I could feel the uneasiness among those gathered outside the sanctuary. I heard whispering and even one say, “I will not go in there today”. As I entered I looked around and I saw a young black girl sitting with the daughter of one of the members, along with several other young girls. The girl had a slumber party the night before, and brought all her friends to church. I was shocked by the fact that so many reacted so strongly to this. Unfortunately, the attitude of that church remains the same today. It is somewhat better due to implementing the Upward basketball program and all are invited for that, but their feelings about the actual worship hall remains the same. Then there is the fact that the last time I attended a worship service there, only one lady spoke to me. That was after Bill and I split, and they all found out I was a lesbian. I no longer felt welcome. I did attend the service when Alex did part of the sermon not too long ago, as well as for Bill’s funeral and the funeral for the father of a friend of mine. Many speak with me now, but I still don’t feel welcome. I started thinking about all that last night and how prejudiced and narrow thinking that church is even today. It’s sad. But there is always hope, there must be hope for change.

Services outside Mother Emanuel June 21 2015 by Beth Summers

(Services outside of Mother Emanuel AME Church 6-21-15)

Retreat weekend with MDSA–brief thoughts

30 Thursday Apr 2015

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Ocean Grove MDSA weekend 2015

I think I am going to need some time to process my experience at the retreat I attended this past weekend with Making Daughters Safe Again (MDSA). I would like to share a little bit now, and then more as I see things more clearly. Ten of us, survivors of mother-daughter sexual abuse, along with licensed, clinical therapists and interns did incredible work on the range of issues that confront us as survivors. We had a beautiful space to do the work, a lovely Inn at the Jersey shore.

One of the last things we did as a group, on Sunday morning, was open up boxes that were filled with cards on which we had written notes to each other throughout the weekend. I have taken the notes and compiled the various comments into what feels like a short letter from one person to me. Somehow, it feels more powerful to look at them collectively, although the individual messages are heartfelt and deeply appreciated.

Deborah,

Congratulations on making it through your first retreat! I’m so glad you were able to attend. It was an honor to be a part of your journey. From the first time I saw you, I thought “what a kind smile she has”. As the weekend went on I saw that it was a reflection of who you are, considerate of others and very kind. You were always so affirming and had a warm spirit. My wish for you is that you are on the receiving end of the same, especially from significant others. The way you talked to your mother during the empty chair exercise was amazing! Thank you so much for your bravery in that exercise. It was powerful. I find your courage to share your experiences in an open way incredibly inspiring. I was encouraged to share more and be more vulnerable by your wonderful example. I am so glad I met you. You have inspired me. Your insights were spot on. Thank you for being so open! I was so touched when you shared about your grandfather after I read my letter to my grandmother. I could tell that you truly understood exactly how I was feeling. I hope you will come back. It was great getting to know you. I look forward to seeing you next year.

A Fork in the Road: Prepared for the Journey

05 Sunday Apr 2015

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

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yellow jessamine

Spring is a time of renewal. We hear that all the time. Those of you who have enjoyed my nature photography may be surprised to learn that I used to dread the approach of spring. I loved winter. Give me some grey, cold skies, the silence that comes with a blanket of snow. I could relate to this, but spring, with its jubilant nature, its explosion of color and new life, was uncomfortable for me. I could never really put my finger on a reason, nothing specific that happened as the season turned each April or May. Nevertheless, I would literally bear down on my emotions and wait for it to pass.

As some of you are aware, I am a survivor of mother-daughter sexual abuse. I have written about it over the years, mostly for myself, as part of the therapeutic process, and more recently have shared two essays with all who desire to read them. If you wish to access the first one immediately, you can go here, and you can readily find Part Two at the website. https://visionsofsong.com/2013/09/04/on-forgiveness-trust-and-desire-part-one/

A couple of years ago, I learned about an organization called Making Daughters Safe Again. MDSA is led by Dr. Christine Hatchard, Psy.D, a practicing clinical psychologist who also teaches at Monmouth University in New Jersey. From their mission statement: The mission of Making Daughters Safe Again (MDSA) is to support and advocate for survivors of mother-daughter sexual abuse (mdsa), to educate professionals and the general public, and to inspire action, knowledge, healing and hope. You can read much more at the website: http://mdsa-online.org/

I am both thrilled and terrified by the notion that women who have had this experience come together at retreats and workshops to share with and support each other. Last year, I purchased a copy of a DVD that was created with the support of MDSA staff, Who Will Love Me? It’s an incredible effort, with four woman sharing frankly and with a tremendous amount of courage their experiences of mother-daughter sexual abuse. I was aware that though each story was unique, there were some commons threads, themes, and I immediately recognized them. I have a story, too.

In a few weeks, I’ll be attending a special weekend retreat with MDSA. It was no surprise to me that as soon as I was confirmed for attendance, my body started sending me signals. First, there was the harsh thump to my chest, sort of near the upper esophagus, the place where I have historically gotten “choked up” when I am under stress. I worked with that through deep breathing and other techniques. For a long time in my life I would read my body’s pain signals as meaning: AVOID! I know my body well, now, and recognize some of the pain I feel in different parts of it right now as related to the processing of what I am about to embark on, this journey towards greater wellness.

It’s going to be really nerve-wracking and scary. I’m just putting that out there because although I want to do it, and I’m ready to go even though it’s still a few weeks away, I hold that it’s important to be more up front about how I feel. Fear and trust can live together, and knowing this allows me to take steps that would have been impossible at other times in my life.

I think I will have a lot to say about the experience once I’ve returned and processed it. It’s hard to know if I’ll share that right away, or if I’ll sit with it a while. I do look forward to sharing some of my thoughts and feelings about it with you.

Oh, and it’s good to be able to enjoy the days of spring. They really are gifts.

redbud