One of your neighbors is crying alone

Though the walls my neighbor is sobbing, sometimes choking on wails of sadness. She is new here and alone over there. Should I knock on the door and offer empathy, tea or a hug? Or will it be an intrusion on her privacy to realize she can be heard? I wait tensely. I cannot ignore her as I write, especially if this is what I am writing:

***

The third therapist I sat down with, I asked her directly: how many times will I need to visit with you before I know whether this is helping? She was the first therapist I didn’t feel repelled by in the initial session; the first pushed me like bulldozer and the second meekly mm-hmm’d then summarized my stories in inaccurate conclusions. The third therapist said I’d know by the fifth session. I tried four. By then I knew she wasn’t helping, just throwing money into the void.

I found these therapists on my insurance website. I figured if I wasn’t sure therapy would help, and I didn’t know what kind of therapist I liked, I should try ones that were covered. My friends said no, the good ones never take insurance. My friends said no, I won’t recommend mine because I can’t have a close friend talk to the same person as me. My friends said it took years and thousands of dollars to find one that fit. My friends said they all went to therapy; I was the only one who was new to it.

The therapists would ask me, what kind of techniques work for you? I thought, how would I know? I sought competence and experience. I wanted to walk away feeling I got insights. After a while I realized for me that means asking questions from angles I haven’t considered, challenging my assumptions, or pointing out reflections about myself I haven’t seen. In the short term, I want to feel calmer or more confident, or to have a new path to try. Basically, I concluded, I wanted someone to do what my mom did to help me make decisions when I was little, plus tell me things about myself I would have resisted from my mother. Oh, said the therapists and friends, we don’t know what that technique is called.

* * *

My company announced it had licensed an exceptionally well-designed mental health program from a dying company, and hired their experts in clinical approach and technology development. Did I have the bandwidth to lead that team in addition to my current role leading our teams for diabetes and hypertension to build a product and take it to market within a year?

A great personal benefit of my career is exposure to diverse health conditions and solutions. I know enough to be dangerous about hip replacements and HIV, glucose meters and MRIs, the FDA and federal policy. Like an accountant or software engineer, my expertise in the business of healthcare is the vehicle for a fascinating journey to learn about mechanisms of human life, the conditions that plague it, and the solutions we devise. And I can use the knowledge to help my friends and family.

The mental health program was my opportunity to learn about depression, anxiety and stress. I would learn how the conditions work clinically, and about the most effective treatments like Cognitive and Dialectical Behavior Therapy, and Mindfulness. We would study who is impacted, who is paying, and why so few people who would benefit from these treatments aren’t using them. And we would place extra focus on people living with multiple chronic conditions, those experiencing anxiety or depression as well as obesity, diabetes, and other risks of cardiovascular disease. I was no stranger to the intimate ties between mental health and chronic conditions.

***

It was in graduate school that my chronic pain hit its ultimate low. I would sneak out of the lab to another part of campus to lie on a bench and do my physical therapy four times a day. I was dedicated to somehow getting better, but I didn’t want anyone to know about my limitations. Sometimes I did my work from home, lying down, because I was intent on being highly productive but I just couldn’t sit. A post-doc told our boss I didn’t come to lab and wasn’t doing work, which led to the greatest fear, conflict and helplessness I’d experienced at work.

Twice a week I took a train and then a very long walk to the physical therapist’s office; it hurt to drive. He was supposed to be the best in the world at whatever I’d been misdiagnosed with, and lucky me he was only just over an hour from my house. He’d stopped me from exercising, the one thing that kept the pain from growing. He told me he was shocked I could swim without pain at a certain place in my neck, and sure enough within a week I had pain there. Under his care, I was progressively worse.

If I cooked for dinner, I physically couldn’t clean afterward. It hurt to carry anything heavy, but I had to walk my groceries home because driving a car was worse. I chose my hobbies, my home, and my daily routine by never having to be in a car. I tried to live around these constraints but avoid dwelling on them; I’d rather push forward than linger in sadness and fear. After months of pain and fatigue when I finally went to a medical supply store and bought equipment to make my surroundings easier on my pain, it felt like I’d crossed the line into disabled. When the clerk told me the price, I broke down and cried. I finally let a doctor give me medicines because he said if I couldn’t sleep through the night due to pain it would never go away.

And yet. I had delightful friends and a beautiful home. I went on adventures, somehow. I fell in love with a kind man I’d be with for many years. I tried living abroad. And I graduated with a masters in mechanical engineering, a certificate from a business school, and a publication on the mechanics of eye tissue. Along the way, I slowly mustered up enough agency to fire all my doctors and physical therapists and start looking for someone new, someone who would try something that involved exercise, the one thing I knew lessened the pain. To sustain myself, I had to believe there was a way, so I could keep trying and hoping.

The lowest point I remember was when I was going from new doctor to new doctor to find ideas, and had been referred to one for which I was newly hopeful. When he told me I just needed to accept I’d have this pain the rest of my life, to take pain and sleep medicines, and to save my money for vacation, I picked myself up out of his office and found a quiet corner to break down again.

These are the types of low moments I remember, but the worst times, the long slow lows where fatigue and pain drained my hopes and energy, for months, those I’ve blocked out. I once put together a detailed, multi-page description of my pain experience. I don’t remember if a doctor suggested it, or if it was when I applied to Mayo Clinic to see if they would rescue me. (I was rejected; they said there was nothing new they could do for me. I could get into MIT but not Mayo.) I found the description years later in a filing cabinet and knelt frozen on my knees, sinking lower and lower as I read about a life experience so much worse than what I can now recall consciously. The reading alone was traumatic; I’ve never revisited that paper at the back of my filing cabinet. But I do tell friends to keep a pain journal, because it is the only way they will ever be cognizant of how much they’ve improved.

By the time I read those papers, my pain was better managed. I had developed a life system to never drive a car and rarely sit in the passenger seat. I wore supportive shoes that never matched my style. I spent more money than I pleased on good, comfortable furniture. I drugged myself for flights. My challenges were physical and they had physical solutions. If I controlled the pain, I wouldn’t have the sadness of those limitations, the burden of continuously navigating them, or the terror of getting progressively worse. Anxiety and depression were conditions other people had; my condition was chronic pain. Every time a doctor asked if I felt stressed I told them I was happy, because — despite everything — that was the truth.

50% of adults are diagnosed with anxiety or depression in their lifetime (1) 60% of those who need care don’t get it (2). For anyone with a chronic health condition, anxiety or depression means their care for the medical condition costs $2,000 more per year (3). For me, like most people, I did not recognize anxiety or depression: I had a realistic amount of fatigue, worry and sadness for the circumstances I was facing. I was cognizant that my energy was lower than I wished, but my friends told me I had more positive energy and enthusiasm than anyone they’d met, so I didn’t dwell.

More than anything else, I managed my pain by exercising every day. Every day I did intense exercise, I had low-pain for 24 hours. If I got sick and rested, I had pain. If I went on vacation and didn’t stay in a pricey hotel with a gym, I had pain. Illness made me anxious. Vacation made me anxious. If I changed jobs or moved my house, the first order of business was how and when to fit the gym into my daily routine. If I went out with a friend to hike or bike or climb, I was anxious about whether the exercise would be enough intensity for that 24-hour period’s pain management. Usually I went to the gym in advance on my own, so I didn’t have to worry while socializing. If I missed the gym or my time was cut short, I was anxious about the pain that would come, the discomfort and tightness creeping all day and night into my neck and back. Once it was there, it would linger for days and days. It was easier to prevent than to treat. One day without exercise could be three days or a week of constant pain.

I worried what would happen to me if I broke a limb, so I took extreme caution in all activities. I worried what would happen to me when I wanted to have a baby, but I pushed the thoughts away. I worried that I had some undiagnosed condition that was progressing beneath the surface and would be found when it was too late, but I told myself I seemed stable. I’d tried numerous approaches to pain management — the exercise coupled with expensive types of therapy and massage, with strange traction or muscle release devices, with medicines or strange beads from the acupuncturist, with specific muscle building. First I tried them one at a time to scientifically identify what would help, and then I tried them all at once because all that mattered was stopping the pain, and I could worry later about which interventions had helped.

Doctors and physical therapists and trainers suggested I slow down; several recommended I start watching more TV. They weren’t speaking to me in a way I understood. My body felt good in motion; it felt tight and painful if I sat still. Why would I spend more time being still? The advice was frighteningly reminiscent of the clinician who’d told me I couldn’t exercise, during my worst year. I was never going there again. I would do what my body clearly indicated was best for me, and I would hope I never had to stop. I also hoped that if I could string together enough days and months and years without pain, the chronic nature of the pain would go away. No one knew what had caused it, as there didn’t seem to be anything wrong now, so perhaps the original cause was gone and now I was caught in a vicious pain cycle. The body believes it’s in danger and triggers pain in a place where it had danger once upon a time, and if enough time goes by without pain sometimes the trigger calms. Sometimes.

It was many years into this routine, maybe eight or ten, that I recognized this experience as anxiety. The fear of missing a day of exercise and being thrust into pain, this tension itself exacerbating the physical pain. In the car I’d feel a tiny stab of pain in my neck and couldn’t help focusing on how it got tighter and tighter over time, carrying me through to days of discomfort that I could envision laid out before me. Through so much of my social life I was distracted by where I would sit, whether I was exercising enough, how to politely get the good mattress or chair.

* * *

My company works in digital care delivery, innovating with software and data to provide better care to more people with chronic conditions. I harbored hopes we would create programming for chronic musculoskeletal pain, because then I could be part of an initiative rooted in my personal experience. When we began our work on anxiety and depression I did not see myself as having relevant personal experience; it seemed a very valuable area to learn about for my friends and family.

In January we kicked off the behavioral health team, and I dove into learning. We identified which conditions could be effectively addressed digitally, and with which interventions. In February we made a library of visual and audio techniques from CBT, DBT and mindfulness. In March we planned the program staffing model of coaches and licensed clinicians.

In March I sat down with my boss and told him of the culmination of months, years really, of reflection on my personal life and goals. I’d been in San Francisco for a decade. It was full of concrete, full of homeless people, and increasingly full of smoke from forest fires. It was hectic in the streets and even more hectic in the office. And most importantly, I couldn’t achieve my personal goals financially. I had sat down with a financial planner and laid out the opportunities I wanted in the next decade, and I couldn’t live in San Francisco, work at this company, live comfortably, and achieve them. I had to change jobs, or I had to change cities. I loved my job now, and I knew how hard it was to find a job like it. And so I was leaving, and I wanted to take my work with me. And I was moving to Minnesota, a place I’d chosen for a romance.

May was the best month to move from ever-pleasant California to the intimidatingly cold north; it would be warm and beautiful on the cusp of summer, with plenty of time to get grounded before the snows covered my path. I left San Francisco with tentative permission to keep my job, to see if it worked. My boss was not hopeful it would work, but he was supportive and impressively open to being disproved.

May was the month when the movers collected my belongings from my home and slammed them into a moving van with rather more force than I’d have preferred. May was the month when the romantic partner suggested that after I leave my home and community and routine behind, perhaps we should not live together right away. May was the month I asked for a referral to a local therapist in Minneapolis.

June was the month when my belongings arrived at the partner’s home where I was not living, and June was the month when he told me he didn’t think the relationship would work. Both happened on the same day. June was the month I called the therapist and made an appointment, confused about how and whether to invest in the partnership. June was also the month when my team at work analyzed the words our users select to describe mental health challenges when they don’t use anxious or depressed.

July, the month of independence day, was when the romance ended and I became reluctantly independent. It’s when he said everything he had to say about his inability to ever be a partner to anyone, to ever adapt to anyone; about his having made me a victim of wishing he was someone he was not. July was not the month when I said everything I had to say, because all my belongings were still in his house and I anxiously feared his actions if I shared my thoughts. That had to wait until August, when I salvaged them safely away to a tightly-packed storage locker. As I drove with my belongings away from his home, I let go of the anxiety that had driven me emotionally. When I got safely away, I broke down as quietly as possible in a corner of a closet in my temporary room in a home crowded with joyful family.

August was the month I sat quizzing my aunt on Minnesota state law to help her prep for the licensure exam in Marriage and Family Counseling. August was also the month when I flew to San Francisco to help build a multi-year plan for our behavioral health program, then flew to New York and helped introduce our sales team to the new program. In August I told my boss, when he pulled me aside, that there was too much chaos and stress in my personal life to absorb the level I’d been handling the past three years at work. I’d mostly hidden my chronic pain, and its resultant depression and anxiety, for over a decade, but this low I couldn’t hide. He was steadily supportive, and I worried less and less that I’d lose my job for moving or for being distressed. August was not the month I told my boss what had happened; that level of vulnerability could not happen until I was stable.

August was depression. Difficulty focusing. Difficulty putting on a smile. Feeling overwhelmed and less productive. I did my routine, all of it: a workout in the morning and hobbies in the evening, working the same hours with the same meetings and deliverables. I was a ritual of my former self.

I also knew, by August, that I would not return to San Francisco. Despite everything, I was calmer in Minnesota. I’d lost ten pounds of stress when I arrived, and it had stayed off through all the turmoil. There was quiet. There was space. People had more time. The cost of living was halved and I suddenly realized how stressful it had been to measure every dinner out, every class or lesson, every uber-vs-bus, against a vague sense of needing to save more. Perhaps most importantly, I was not in the office. There was not a constant cacophony of voices around my desk, the rush from meeting to meeting where I drank cans of LaCroix sparkling water because I didn’t have time to fill a glass from the tap. The fleeting hopes of settling somewhere quiet to do thoughtful and strategic work during the day. The knowledge that even if I found a quiet moment it would quickly be interrupted by someone who needed me or the room. I had known the open office wasn’t my preference, but had found it energizing, and it wasn’t until I was gone that I realized the constant distraction was drip torture for my mind. I did more thoughtful, strategic work living in my family’s homes in my new nomadic, unstable life. I didn’t know where I would live, but I didn’t want anyone to think I was coming back.

September I fled Minnesota, the scene of the crime, the reminders every minute of what I’d trusted, invested in, and lost. September I began the healing for which time is the only medicine. And, unhinged from my plans and commitments, I embarked on a comparative study of places to live. I spent most of my time going back and forth between Seattle and Minneapolis, September to October to November.

In September the behavioral health program was ready for participants, and coach recruiting was underway. In October we looked at our enrollees over the past nearly-decade in our diabetes and heart-health programs and realized that their levels of anxiety and depression upon entering our program had been slowly but steadily worsening. In October I suggested we compare levels of anxiety and depression within the company, for our dispersed workforce versus the one at headquarters, and heard the type of short chuckle that recognizes a witty bandaid over a truth of life.

And somewhere in my brain, between the end of October and December, I settled on the knowledge that my mental health was better in Minneapolis than any other place I’d assessed. A therapist I tried in Seattle (I was comparing culture, greenery, food, costs, yoga classes, gyms, and — why not? — therapists) suggested I just choose Seattle and settle down, because I clearly liked it. The comment triggered a “no!” in my brain that over time led me to realize I wanted to be in Minneapolis because my mental health was just, simply, better.

I’d made strategic mental health decisions before. When I’d lived abroad in Switzerland one of the many reasons was a conscious desire to immerse myself in a culture with work-life-balance. Then there was the time a few years later I told my Swiss boyfriend I had to move away because I had been deeply unhappy for years there and didn’t like who I was becoming. But I’d never made a decision by being truly in touch, in the present, with my mental health. I’d felt anxious or overwhelmed or fatigued but I’d never said “I’m depressed in Switzerland” or “I have severe anxiety about my chronic pain.” Now I was making a major life decision based on a subtle but deep real-time knowledge that at this point in my life I was more at peace in the Midwest.

* * *

Last month I was invited by our user research team into homes of people living with diabetes. Our goal was to better understand their lives and how to support them. The theme of mental health tugs at me, in a stream of paraphrased comments.

When I was diagnosed? Oh I was very depressed.

No, I don’t talk to anyone about it, you don’t know how they’ll judge you.

I decided to work hard to cure it, but then I found out it couldn’t be cured, so now I have no goals.

I never told my doctors about the symptoms because I would have been disqualified from my []

It’s a progressive disease, and all I can do is fight to slow it down.

If you want a real shock to your system, look at the prices of insulin and strips.

There is worry about medications and side effects, helplessness at being controlled by a condition that will never end, people who are disappointed in themselves and beat themselves up but don’t understand what they actually can and should do — only that they are not doing it.

I remember all those clinicians and supporters who told me to slow down, to take more breaks, or to watch more TV. They never used the right words or context to help me realize my own depression or anxiety with chronic pain. Will my team at work be able to help these people? Will they find their way like I did?

* * *

My health insurance recently offered an incentives package to earn an apple watch if I go to the gym every day. I’ve been going to the gym every day since I was 22. My goal now is to miss the gym sometimes and to not care, to not beat myself up, to not be disappointed in myself. My goal now is to let myself not go to the gym and to recognize at the deepest levels in my mind that I do not need to be anxious. The pain has lessened enough over years of care that it won’t flare from missing a day, and anxiety can only make it worse. I missed several days in January while I was sick or moving or traveling. It wasn’t great for my muscle tone or my energy level, but it was a beautiful experience because I never worried. I wandered down a snow-covered Minnesota street to buy soup and a dish drainer for my new house and I passed the gym and walked home to make tea and write.

* * *

I have been out to see the sobbing neighbor and to give her a hug; she apologized for disturbing me and left me a thank you note for helping her feel not alone in her deep and lasting sadness. She needs more than a hug. There are so many people going through their own private, lonely journey right now. She is. I am. You are, even if you don’t know it now. For many of us, our physical health is not helping our stress, and our stress is not helping us navigate. The tiniest fraction of us have found a path. I will strive through my writing and work, for the rest, to help awareness and care spread ever faster, until we reach across the country and, if we are not too late, engulf my sobbing neighbor in calm and hope.

1. Kessler RC, Angermeyer M, Anthony JC, et al. Lifetime prevalence and age-of-onset distributions of mental disorders in the World Health Organization’s World Mental Health Survey Initiative. World Psychiatry. 2007;6(3):168–176.
2. National Institute of Mental Health. Mental Health Information — Statistics. 2017. Available at: https://www.nimh.nih.gov/health/statistics/mental-illness.shtml. Accessed February 19, 2019. https://www.nami.org/NAMI/media/NAMI-Media/Infographics/GeneralMHFacts.pdf.
3. As told to me by a major commercial Health Insurance company based on their 2019 analysis of claims

…more from Shira can be found here: https://lotteryofman.wordpress.com/