September 11, 2020

Dear Interested Readers,

 

It’s Nineteen Years, And It Seems Like Yesterday

 

You need to be in your mid eighties to remember anything about the Holocaust or World War II. If, like me, you are 75, you might remember the Korean War. If you are 70, you probably remember when the Russians launched their Sputnik, or when you got vaccinated for polio. If you are 65, you will likely have some memory of John Kennedy’s assassination and Martin Luther King’s “I Have A Dream Speech.”  You are probably at least 70 years old if you served in Vietnam or protested against the war. If you are 50 and were a precious child, you might remember when Iran pulled off the hostage taking that was the end of Jimmy Carter. If you are forty, you may remember when the wall fell in Berlin. If you are thirty, you have some memory of 9/11. I remember that day much more vividly than I remember last Christmas. 

 

9/11 was a defining trauma for our country from which we have never completely recovered. The military actions that eventually followed 9/11 continue on to this day like a chronic disease. I will never forget the gut wrenching scene of people jumping from ninety or one hundred floors high in the World Trade Center, choosing to die by a fall rather than by incineration. 

 

I will be thinking about the events in Shanksville,Pennsylvania, Washington, and lower Manhattan all day, but it is also true that the same thoughts recycle frequently along with other unforgettable events that have occurred during my lifetime like the assassinations of John and Robert Kennedy, and Dr. King. We have suffered many losses over the last sixty years. My prayer is that our losses are associated with renewed resolve to improve the world in ways that will mitigate future losses. What else can we offer to the memory of those who died in these events that changed the course of history? 

 

Let Me Introduce My Friend and Neighbor, Brande

 

Frequent readers of this letter know that over the last two years my wife and I have participated in the creation of a unique non profit organization, Kearsarge Neighborhood Partners,  in our neighborhood, the Kearsarge region of New Hampshire. It takes more than a well developed website to make a difference. KNP now has recruited almost a hundred volunteers who are involved in a variety of activities to improve the lives of our neighbors and our community. The mission of KNP is:

 

Kearsarge Neighborhood Partners collaborates with individuals and organizations to create a support network which empowers people to achieve stability in their lives.

 

The vision of KNP is:

 

We envision a community where neighbors help each other flourish and everyone has the opportunity to experience material, spiritual and relational wholeness.

 

The principles of KNP are:

 

• We respect human dignity, and embrace the transforming power of love and compassion.

• Interpersonal relationships with individuals and families, as well as our commitment to walk beside each other, can empower our community to move toward wholeness.

• We try not to do for others what they have the capacity to do for themselves.

• We recognize the value of reciprocity in our relationships and seek opportunities for those we serve to join us in building community.

• Our focus is primarily with people in the Kearsarge/Sunapee region whose needs match our resources and expertise.

 

Some of us in KNP who have had prior experience working with people in a supportive role now partner with individuals and families who request help managing in a stressful environment. We are also training others who have never worked in a counseling role who are interested in working with individuals and families. The problems we address vary widely, but most are associated with economic challenges and encompass many of the issues we consider when addressing the social determinants of health.

 

We always work in pairs, and sometimes organize teams composed of “specialists” that can bring needed expertise to a difficult problem like filing back tax returns or applying for disability or veterans benefits. These teams function like a “medical home.”  We have regular meetings. We refer to our clients as ‘Neighbors” because they are our neighbors. We meet frequently. Our conferences are structured so that we can share knowledge and improve our skills through discussing the progress that is being made, or the barriers that need to be resolved. We make confidentiality a high priority.

 

For the past six months, Cindy Johnson, the retired associate minister at my church, and I have had the joy of getting to know Brande and her family. We have had weekly Zoom meetings with Brande and her husband Chris to discuss issues and solutions, and have had some socially distanced outdoor meetings when it has been appropriate. With each meeting Cindy and I have come away with a growing sense of respect for this couple who are struggling against a heavy current of bureaucratic barriers and community business practices that seem to be designed as punishment just to make their lives difficult, or to take advantage of them financially. They seem to expect these barriers as “it is what it is” and then they do what they can to move forward against the hard realities that threaten their dreams. It takes a lot of executive skill, persistence, and determination to be poor in America. 

 

Our relationship has grown in time. It began with the imminent threat of their eviction, but has always been pointed toward long term financial stability. For a long time it has been clear that Brande and her family fall between the cracks of the social services safety net. The ways in which they pay “poverty taxes” have enlightened me. In all of our conversations, Brande, and her very hardworking husband, Chris, have always accepted responsibility for their future. Chris works about seventy hours a week as a subcontracting carpenter. Their dream is to own their own “forever home.” 

 

From the beginning of our work, Brande and Chris, have called themselves recovering addicts. They accept responsibility for the origin of many of their problems. They have been “clean” for six years. To my surprise, it costs them over five hundred dollars a month in medical visits and substitution therapy to be clean. The story of the evolution of Brande’s addiction and recovery has suggested to me that our fragmented healthcare system has failed them and continues to fail them. Is it any wonder that we had about 70,000 opioid related deaths in 2019 and more than 750,000 opioid deaths over the last twenty years?

 

My response to Brande’s story is to wonder what would have been different if she and her husband had enjoyed the benefits of universal healthcare, or access to care that was patient centered, safe, efficient, effective, timely, and equitable. The social determinants of health do need attention, even in rural and small town New Hampshire!

 

Along the way Brande learned about this weekly letter. She told me that she too, liked to write. She also told me that she had lost eight friends to the opioid epidemic, and hoped that someday she could help other people with her personal testimony. I invited her to tell her story for you, and told her that if she wanted help I would be glad to try to help her tell her story. That was several weeks ago. I was surprised earlier this week when I received a 2300 word essay from her plus a five hundred word beautiful free verse poem/story. At the time I did not know that both were composed on her cell phone. She does not have a computer.

 

When I read Brande’s story I realized that it would be wrong for me to do anything but add a few commas and break it up into paragraphs. Punctuation is hard on a cellphone. Her voice has an authenticity that I respect, and to change the flow of her writing would deny you the amazement that I experienced when I read what she had written. I think that Brande has a talent. Is she a fledgling Carolyn Chute, whose 1985 novel The Bean’s of Egypt Maine gave us insights into the working class families of rural Maine? Perhaps her potential is better compared to Stephanie Land who gave us her memoir of poverty two years ago, MAID: Hard Work, Low Pay and a Mother’s Will to Survive. Time will tell, but Brande has much more to say than her introduction below. I suggested that she write under a pseudonym to preserve her privacy, but she said that her friends know who she is. The story is true. Consider it a first installment. Brande wanted me to share a picture of her family. She is a person who always tries to smile, even when her world becomes uncertain.

 

 

 

Brande’s Story

 

Hi all, my name is Brande. My dear friend and mentor, Gene, invited me to write a little bit on his blog. I’m assuming I’m giving you a little peek into the everyday life of a stay at home mom, recovering addict, and someone who has a different vantage point of everyday life coming from a low income household. 

 

A little back story. I grew up in the little “blink and you’ll miss it” town of Bradford, New Hampshire. My parents, and their parents alike, all native to the Kearsarge area, Warner and Bradford. My father working long and hard hours climbing his way up the chain to become the chief of the state police at the New Hampshire State Hospital. He crafted, created protocols, and was the last and final chief, retiring after almost 50 years. My mother also worked at the state hospital as a nursing assistant, just shy of 20 years; then became a staple at the local convenience store in downtown Warner for almost another 20.

 

My parents were true thoroughbreds, they created a large and exuberant family of four biological children with myself being the youngest; and lots and lots of our friends being “adopted” so to speak, mixed in between. My family had our own little “compound,” sharing three houses in a stretch of land beside the old Bradford Center meetinghouse and church, which eventually whittled down to two houses as I was born. We grew up in an early 1800s farmhouse; shared land with a family member who was our next door neighbor. My father and mother didn’t have much, even though they worked long and grueling hours.

 

I grew up shoveling snow out of my window in the winter, with extension cords as our source of power, kerosene heaters, stockpiling the wood for our main source of heat, using a bucket as a restroom, and no running water until we got our well dug in the late 1990s. Like I said, it wasn’t the best, but it gave all of us kids a different view on life. When we wanted or needed water, we went and fetched it at the local store, brook, or down to the lake. Winter times, if the snow was white, we grabbed it and shovelled it into our buckets to heat on our stove. We had no central heating, so many a winter night, the electric blanket and as many blankets as possible was a creature comfort. 

 

Shared bathing schedules, nice enough family members and friends would let us sneak a nice hot, long shower or bath– simple, but was amazing. Sitting next to the kerosene heaters reading a book by oil lamps, and on special occasions it was warm enough in our house to not be full dressed like you were outside. Summertime was another adventure as we’d go down to the lake, and when no one was looking we’d take an impromptu lake shower bringing our needed supplies with us. Foreign to most, even my age, considering we live in such an industrial world even in the 90s. 

 

I get the weirdest looks when I tell how I grew up, considering my story about how I was the first person to use the new to us shower (my father had scrounged, saved and worked his tail off to put in and plumb our downstairs) in over 80 years. 80 years!  80 years and no running water. I was 15 years old. No more 5 gallon buckets with warmed up water to bucket over ourselves.  I felt like I was the happiest girl in the world. After that, we got our house wired, had actual sockets to plug our appliances, electronics and lamps into, and just recently my parents got brand new monitor heaters as a secondary source of heat. 

 

Needless to say, I know what it’s like to have nothing other than a roof over my head. 

 

I graduated from Kearsarge and Sugar River Technology School in 2004, followed by a run at cosmetology school, which unfortunately working prioritized, and I wasn’t able to finish. I never strayed too far from my hometown. Skipping from the surrounding towns from 2004 to 20013, finally returning to where my heart belongs. I married my highschool crush in 2007, still going after 15 years of being together.

 

My husband Chris is a US Air Force veteran, and owns his own carpentry business. We have two beautiful, happy and healthy children, Brayden is 13 and Evey Ella is 7. We also have our fur babies: Loki, our Australian stumpy tailed shepherd, husky mix, and our two sister black cats, Iyah and HayHay.  

 

I became a stay at home mom after I fell ill in 2008. I had a really great job, following in the shoes of my parents at the state hospital. I was a direct care staff, mental health worker for an admission unit at the NH State Hospital for psychiatric patients admitted through the state court system. I started in 2005 working my way up the rungs from a standard mental health worker to a level two mental health worker. I learned new, wonderful, exciting, albeit terrifying things. It was a world I had never seen before, to my father’s credit he never told us the goings on at work. 

 

I worked with the people who were at their worst in their worst days, in the worst mindset at that point in their life. Having to help someone who doesn’t want to be helped, and not being in their right state of mind can be very rough on the soul. Luckily, when someone had the right treatment and you can see them getting better, them being able to shake your hand as they walk out the doors feeling better again, was the best part of the job. To be a little piece of someone feeling better is truly rewarding. 

 

Unfortunately, after I had given birth to my eldest, Brayden, in 2007 something changed. I still remember the day when my whole life changed. I went to go lift my newborn baby out of his crib, and I couldn’t. My arms wouldn’t work. It felt like I had no strength at all. My body hurt, my back felt like I had molten lava being poured down it. Every 30 seconds would be another flashing attack. My hands ached. My neck was so taut I could barely turn my head. It felt like I was dying. I went repeatedly to my doctors… they kept saying all my labs were normal, that I had arthritis, that I sprained a muscle, or that I just tweaked my back.

 

It didn’t make any sense. I was at my limit. Being a brand new mom to a sick baby, having postpartum, and finding out at 22 years old you have severe arthritis, I was overwhelmed, and scared. The doctors thought it was in my head. I was diagnosed with bipolar depression,  severe anxiety, depression, OCD, and ADD. This was just the first wave of course. After getting my original diagnoses, I was then sent to another doctor. She ran several tests, and it came back that I had fibromyalgia.  I knew what this was as my mother also has this. I knew what I had in store for me, and I was terrified. I tried everything under the sun at that time to try to ease the absolute awful pain.  Nothing worked. Nothing. 

 

Then my primary doctor suggested I go to a pain management doctor. She referred me to the same one my mother had been going to for years. He was in my network, and seemed to know everything and anything about my diagnosis. At this time I was taken out of work and had to start my way navigating through a sea of disability claims, rejections, and more doctors and shrinks than I care to admit. 

 

After being to my first round with my pain management doctor, I found out that I had degenerative disc disease, severe arthritis in my back, hips, knees, hands and neck, chronic regional pain syndrome on top of the fibromyalgia. My pain management doctor prescribed me pain medicine.

 

Due to my illnesses, I had to stop working and was awarded full and permanent disability.  By now about a year had passed. My post partum almost gone, my sick baby getting better and better. I am starting to feel better with the medicine I was prescribed. Until the day I lost my insurance. My pain management doctor told me he would no longer provide me with care. The first couple of days I was fine. Until, well, I wasn’t…

 

I went into full blown withdrawals.  My husband brought me to the hospital emergency room, and I was given a drip and pain medication.  I instantly felt better. I knew then that I was dependent on the medication. I was able to go back onto my pain management a few weeks later and started getting my dosage again. I was on them for almost three years, and again my doctor changed his insurance standards, and I wasn’t able to go to him or any pain management because of this loss of insurance for the second time. 

 

I resorted to ER shopping. I would go to all the local emergency rooms and get my “medicine.” This helped until it didn’t. Emergency services are exactly that. Emergency. They only give you so many because you are expected to follow up with your primary care. This is where my story turns… 

 

At this time my husband and myself were both using. So we had to buy double to have us both not be sick. I had to finally resort to buying pain medication off the street.  And no, I didn’t just walk up to someone and ask, no. When you start this venture, either willingly or unwittingly, you usually meet some other people going through the same distress. So, in short I was able to keep my pain under control, and be a “functioning addict” for almost seven years.  I didn’t actually say the word addict until five years down this path.  At this time it was around 2011, and many many, many people were in the same place as myself and my husband. The street value was a dollar a milligram. When you have two people using, who do 30 to 80 milligrams a day, it becomes expensive.

 

Jump to 2012, my husband has a great job, I find out I am pregnant with my little girl. I was able to get back onto my pain management program, and was prescribed again.  Lower dosing and I felt okay with this because the doctors know best. 2013 came and I had our daughter. We had a rental home, two newer cars, we were doing pretty well. Until my husband lost his job, and we lost all our income and insurance once again. Marking the third time this has happened. We had to once again resort to buying off the street.  Again prices are steadily rising with the black market and with two addicts using – it’s too expensive. 

 

Because of this, the withdrawal starts… you will do anything. Anything at all. Just to stop the sickness. Unfortunately, we did almost anything. I was told, “Hey why don’t you try this.” “This” was heroin. We settled for heroin. Out of my whole entire functioning addiction, I always said; “I’ll never do heroin.” I did. We did. We lost everything. Everything we worked so hard to get, maintain and have, we lost in eight months. Out of ten years of being a “functioning addict” we lost our home, cars, children and livelihood in eight months. Along with losing EVERYTHING including our children, we got into legal problems. It really is a vicious and tormenting evil. 

 

The withdrawal off of heroin is unlike anything I have ever felt in my entire life. The thought of ever feeling that again haunts me. Your body feels like it is literally dying. Like your insides are being turned inside out, your skin and bones being beaten, being seared and frozen at the same time. Not to mention the mental aspect of it. Literally rewiring your brain– a doctor once told me “It’s like you’re driving down a highway full speed then someone highjacking your car without stopping, slamming it into reverse, then drive, then turning it on and shutting it off simultaneously. Having no regards for how your engine will cope, utterly malfunctioning your car. My husband and I are some of the lucky ones. When using heroin you have two options, continue using, and die, or get clean. We got clean. 

 

We are still under a medically assisted rehabilitation program.  Everyday we continue to fight our addiction. Addiction, afterall is a disease. I will always be an addict, each and everyday I have a choice. I have a choice to fight, and walk away from the evil that ruled my life, or give in and “the one last time” will really and truly be: ONE last time. My children, mom and dad are the people I continue for. I got clean for me. I had to. If I didn’t do it for me, I wouldn’t be here. Although I do often tell people a piece of me died the day I took that first pill, then another when I took the first dose of heroin, another person entered the world when I decided to get clean. I hope I have many, many years learning about this new me. 

 

I appreciate you taking the time out to read my little blip of a story. I don’t often share my experiences as there is still some shame. I hope to continue to have a story time here on Gene’s blog. I have so much more to say! Thank you for allowing me the privilege of sharing my voice. 

 

Sincerely, a grateful recovering addict, mom, wife; person,

Brande 

 

A Week When The Sky Turned Orange, and The President Revealed That He Knew That The Virus Was Bad, But He Didn’t Want To Create Panic

 

On my walks this week, I have been listening to Eric Larsen’s wonderful recounting of Winston Churchill’s conduct of the first year of World War II, The Splendid and the Vile.  It is a fabulous story that “reads” like a blockbuster novel. Churchill was a remarkable leader, but his performance was not flawless. Perhaps his biggest error was to block the reporting of the sinking of the steamship Lancastria by the Germans. More than 4,000 lives were lost at a time when the British public was getting a lot of bad news. Dunkirk had just fallen, and most people thought a German invasion of Britain was imminent.

 

Churchill decided to block the report in the newspapers of the sinking of the Lancastria. A month later when American papers published reports of the disaster, Churchill faced a huge backlash from an outraged public. Our president is not a reader, and does not have much interest in the past, so the lesson was lost on him. I was not surprised that he did not present his understanding of the truth back in March. His intent is really not for me to know. Now he says that he was protecting the public from panic. To take a page from his usual rhetoric let me just say, “Some people, I am not sure who, and don’t know if they are right, but some people are saying that he did not want to cause panic in the stock market. I don’t know. I am just saying…”

 

What I do know that is remarkable was that it was as dark as night at 3 PM in Santa Cruz this week where my son and his family live. Today’s header shows a dark orange sky behind the redwoods in their yard that would make a great background for a movie about dystopian times. We are getting our RV checked out in preparation for a three thousand mile trek to the left coast. We had a trial run to Point Judith and Falmouth last weekend. Who knew a camper was such a heuristic challenge?  We will be on the road as soon as my wife is convinced that the flames in the West are history, and there is not much chance for a second snow storm in Denver before Columbus Day. My guess is that our launch day is about ten days to two weeks into the future. I hate to miss the beauty of the fall colors that are coming, but I have not seen my grandsons since last November, and that is a long time when they are six and three. 

 

Be well! Demand the truth. Stay home as much as you can. When you are out and about, wear your mask and practice social distancing as best you can. Reject leaders who will not be accountable and who distort the facts “to protect you.” Look for opportunities to be a good neighbor. Let me hear from you. I would love to know how you are managing the uncertainties of our times,

Gene

 

 

 

 

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