Structure

I’ve long imagined the joys of retirement; I’ve dreamt of sleeping late, lingering at coffee shops, and being outdoors when the sun shines. Reality proves, however, that I am not to be trusted with large amounts of unscheduled time. Research on bipolar disorder reveals that I am not alone. We’re known to fritter away valuable time lounging in bed, watching television, entranced by social media, or even staring into space.

Since returning to my home state two years ago, I have been rebuilding my life. I arrived with no job, no home of my own, little to no social network and before long, a spanking new diagnosis of bipolar disorder. Fortunately, I have a college education, parents who allowed me to live in their home, family in town, and health insurance – all of which cushioned my fall. Within days of leaving the hospital, I found a NAMI support group and instantly became a regular.

For most of the first year and a half, my time commitments were limited to endless job searching, medical and therapy appointments, occasional visits with a compassionate and patient friend from college, and periodically cheering on my nephew in his sporting events. Since I was restless and bored, I walked a lot; but without my usual passion, my pace was quite slow. Through it all, I've had NAMI.

At last, all that job searching paid off – first a four-month contract and now, thankfully, a rewarding temporary position that just this month turned permanent. The job is not just a paycheck; it’s 40 hours per week that I know where I’ll be, when I’ll be there, and what is expected of me. It’s not a social life, but there’s enough social interaction that I schedule lunchtime alone. A job also keeps me to a regular sleep schedule. My personality has returned.

Filling personal time to my satisfaction remains a work in progress. It took me two months to realize that a regular commute by bicycle is not going to happen. Living alone challenges me in cooking, cleaning, and managing paperwork. I now volunteer my time with NAMI but nothing else. Sometimes I overreact with regret and harsh self-talk. Eventually, I remember I am learning and mistakes are just part of the process. This makes room to shift my thinking. I’ve started evening and weekend walks, take some chores “on the road” (to a coffee shop, for instance), and search patiently for another volunteer gig that’s just the right fit.

I envy those who excel at time management and master ambiguity. As for me, I need structure and consistency – within reason. For instance, I’ve decided to commit to blog posts as time allows. Helpfully, that occupies slow times but without the pressure of deadlines. So I plod along at roughly one post per month.

Likewise, my workplace allows flexible scheduling. Most co-workers opt for 9-80, which means fitting 80 hours into 9 workdays followed by every-other-Friday off. Instead I choose to arrive late on Mondays, enjoy quiet and abbreviated Fridays, and fill in the difference mid-week.

To compare myself with others is dangerous territory. When I read this post, I feel embarrassed that someone of my age knows so little. Through hearing other stories and validation from both my therapist and a friend whose opinion I value highly, I feel pleased that I’ve come far in two years and keep making progress.

My Manic Story

Friendship was my anticipated topic for this post. However, two things changed that. My recent “Family of the ‘Patient’” post already includes a discussion of “chosen family” and other friends. I also have a blog follower who is kind enough to respond with comments; as I began to reply to one of her comments, I realized I had enough material for a stand-alone post. So Isyss, this one’s for you!

I’ve actually had two hospital stays for one manic episode. The first occurred literally as I was moving from my previous home city to the current one. Apparently when I’m manic, I like a good story – where I’m the author, director, and star performer. Once at the airport and due to a series of events that seemed connected to me, I attempted to get the attention of my two step-daughters (who weren’t there). As might occur in a film or play, I saw myself as a good parent seeking a last-ditch effort to salvage troubled relationships. I shouted with all my might to let them know at which gate to find me. I also insisted that the airline representative contact one daughter by phone. The result was that the airline refused my boarding the plane and instead called airport security. As it happens, the driver was someone I knew from living in a former town. This only fed my being convinced that a story was being played out, that he was driving me to see the girls. As it turns out, the destination was a hospital room. I was still under the delusion that I would meet up with the step-kids if only I proved worthy or convinced them that I was serious. Their mother D and I drank a lot of tea; my joke was that peppermint tea solves every health problem except leukemia (from which she died). So I thought if I insisted on “lots and lots” of tea, they would know that was their code to find me. At the hospital, I noticed another resident, asleep and facing the wall. To me she looked like the oldest step-daughter, so I tried to sneak into the room to take a look. Of course, that didn’t sit well with the hospital staff, who directed me back to my assigned room. Upon leaving the hospital, I hadn’t yet given up hope that the girls would meet me at the other end – until I wound up at the psychiatric unit under a 72-hour hold. Reality hit, and I worked to get out of there as fast as possible, which meant convincing the staff I was no longer a threat to myself or others.

At the end of my stay, I was in communication with my parents and ready to head home. They were told by their local mental-health staff that I would receive better care where I was at, so they tried convincing me to stay. (Later I discovered just how much more difficult it is here to find a psychiatrist willing to take on a new patient, even with ample health insurance.) I thought surely they were wrong and frankly, I was hurt that they were dragging their feet. The psychiatric unit confirmed my previous diagnoses of generalized anxiety disorder and ADD, adding one akin to “temporary severe emotional strain due to grief.” They relayed to my parents that the unit was for short-term stays only, and I boarded a plane home.

With an incomplete diagnosis, another episode was eventual. About five weeks later, I found myself amidst another story line. This time I deluded that I was meant to improve upon weak areas in my parents’ marriage by way of more “magical thinking.” When I verbally shouted and phone texted in nonsensical ways, my dad became stern and his face turned bright red; I added his blood pressure to my list of concerns. I was surprised when two police officers arrived at the door. (Remember Isyss, my family and I are white; the police, for the most part, are perceived as helpers.) After a brief discussion, I was standing near the officers. I paused first and then went for it; I tried to slap one of the officers in the face. (My dad later says that was a completely lame attempt.) Again reality struck; in a blink I was taken down. Fortunately, I was not charged with disorderly conduct or any other criminal offense; instead I was taken by ambulance to the hospital. As a supporter of civil rights, it amused me that I had gotten away with trying to slap a cop but, thanks to bruised ribs that took weeks to heal, a life experience I find unnecessary to repeat.

My blog friend Isyss asks why my hospital stay was as long as three weeks. I have only my own story, so I didn’t realize that was atypical. Certainly at the time, it felt like forever! Anyway, first I was brought to a part of the hospital to be checked medically. Two memories stand out. I wondered whether the blinking light on the ceiling was staff observing me or worse, causing me some harm. On one occasion, I tried to kiss another patient gently and lovingly on the cheek; I was met with a sharp slap to the face, an irony not lost on me.

In a matter of hours, I was moved to the high-security unit of the mental-health wing. I lived a week or so with minimal privileges – I had to ask, for instance, for crackers and peanut butter or any reading material. I was allowed brief phone calls at allotted times and no one came to visit. Since I was bored silly and high-strung (anxious and manic?), I spent a lot of time pacing in the limited confines. There were regular visits with my assigned psychiatrist.

Eventually, I was moved to the more general mental-health wing. At first, I was pleased with the improvement in conditions. There was a food room, where at any time I could access goodies like tea and oatmeal. Rarely used by others, the exercise bike near the television became my favorite hangout. There were scheduled events such as gym or craft time and, upon approval of the psychiatrist and my personal favorite, escorted walks outdoors. I attended all of it, if for no reason than to pass the time. Hours and accessibility to the phone improved. I was allowed visitors and eventually, absences from the hospital with allotted times and escorted by approved friends or family. I was fortunate that a friend from college was generous as my visitor and approved escort. I soon became bored with the routine. In regular visits with my psychiatrist, I attempted to figure out the best way to convince her it was time for me to go. Finally in her absence, I met with her peer, who approved my release. My parents came to the hospital to pick me up, with the understanding they would meet with my psychiatrist; she kept them waiting literally for hours and I received a verbal diagnosis of bipolar disorder. However, nothing came in writing and I was offered no follow-up care except to meet with my regular medical doctor.

Two years have passed with no more episodes. Apparently, it’s unusual for someone with bipolar disorder to receive no diagnosis until age 46. As long as I can remember, (generalized) anxiety has been a part of my life. But given the dramatic nature of my manic episode, I honestly can say I never had one before or since.

Family of the "Patient"

Recently my family celebrated two birthdays; my niece now is 3, and my nephew is 23. So family is on my mind as I write this particular post.

My family was aware of the great changes I experienced – from widowhood in 2009 to a change in cities and jobs in 2010. But the geographical separation limited their intimate knowledge of my experience. Until 2013, when I relocated again – this time to my childhood home. Diagnosed with bipolar disorder weeks after my arrival, my family has witnessed my adjustment in the intervening two years. The drama of my manic episode was played out in my parents’ living room; their phone call to the police department led to my 3-week stay in a local hospital. Despite my being middle aged, I lived in my parents’ home for the first year. They had front-row seats as I adjusted and re-adjusted to medications and insomnia, while also struggling with the fears of unemployment and job searching.

My parents and siblings attempted to be supportive without enabling. They tried to impress upon me that my situation was merely temporary, a belief I had trouble sharing. I am told that after my phone calls to one sister where I expressed my fears, she called our other sister to express her frustrations with my poor attitude.

My mental-health status is far from a family secret. Extended-family were privy to my adaptation. While describing my attempted altercation with the police, a favorite second-cousin reminded me that another relative had been killed by police after a domestic-violence call. During one rough patch when I found myself unable to drive home safely, I ended up at the home of an aunt for about a week; another aunt transported me for an appointment during that stay.

My NAMI Connections support group has become a “chosen family.” With very few exceptions, I have attended my favorite NAMI support group weekly since my diagnosis. They have seen me through fear, mania, depression, and hope. They have offered boundless assistance – from offering the name of a psychiatrist who is taking on new patients to suggesting recruiters who hire accountants. Best of all, they can relate to the experience, which isn’t always rational.

As I improve, I imagine my families look on with guarded optimism. Since acquiring temporary but regular work several months ago, I’m feeling more like myself. My sense of humor has returned. And I’m able to look and act beyond myself; I’m now a partner within my families.

Making Peace

While filing documents at my job one afternoon, I started chatting with my deceased partner D. A few years ago – when we conversed regularly – that hardly would have been noteworthy. (I joke that now I win all the arguments.) However, it’s been some time since I felt or heard from her. Only when her presence returned was I reminded how long had been her absence. Not surprisingly, I enjoyed the exchange and a sense of peace.

The thought came to me that I had been too lost in my own fear to recognize her presence. I had returned to my home state without D after 20 years away, was almost immediately hospitalized and diagnosed with bipolar disorder, and spent nearly two years seeking a job and trying to make a life in a new location (albeit my childhood home). You know – fear.

The good news? Nowhere to go but up.

Mental health is a lifetime project that requires self-advocacy. Two years ago, I left a stay at the psychiatric unit of a local hospital with a diagnosis of bipolar disorder. I was released without any professional bothering to put my diagnosis in writing. Despite the insistence of my parents and me and aside from a few prescriptions, no referrals or resources were offered. Although this state prides itself on quality of life, the need for psychiatrists is greater than the availability. (Ironically, in the scarce population of my previous town, I had an easier time getting an appointment with a psychiatrist for a diagnosis of ADD – attention deficit disorder – than I had getting a psychiatrist in this metropolitan area for a diagnosis of bipolar disorder.) It took several weeks to find a psychiatrist who was willing to take on a new patient; and I found him after a referral from another person with mental illness. Fortunately, the therapist from my last locale referred me to the therapist I’m seeing now.

Since then, I’m on my second psychiatrist, a nurse practitioner whose level of care far exceeds the first. In the language of the mental health world, I am “stable on my meds;” after experimenting with different psychotropic medications from a list known to help patients with bipolar disorder, anxiety, and maybe ADD, the combination I have been taking for months are proving effective without undesirable side effects. In the first year, I attended two groups meant to support and advise people with mental illness, the second of which relied upon DBT (dialectical behavior theory), which basically means that if a certain behavior causes pain, then do the opposite. For example, while depression can make it hard to get out of bed, it’s also true that staying in bed longer than needed for a healthful sleep can deepen depression; so get out of bed although it’s emotionally difficult at that moment because it’s emotionally rewarding in the long run. Weekly appointments with my therapist where I cry, self–blame, and report that “I want to give up but don’t know what that means” have evolved into less frequent appointments where I share successes, joys, and meeting goals. (For instance, starting two days ago, I’m commuting to work by train and home by bicycle. Obviously, today I’m back to composing on this blog after a long absence.)

Struggling with a new mental-illness diagnosis complicates an already long and painful search. One critical resource that my therapist recommended was a local Workforce Development Center, where I was assigned to individuals who specialize in working with people who have learning, physical, or mental disabilities. They taught me that a cover letter is just that – a letter – and advised me how to match my resume to the job description. I also worked with recruiters who are unaware of my mental-health status. In two years, I’ve had a handful of gigs lasting from a few days up to two weeks; I was “let go” twice. At times I cancelled interviews or took breaks from job hunting while too “out of sorts” to follow through reasonably. For ten weeks or so, I clerked at a corporate grocery store where a customer noted from my vocabulary that I must be overqualified. Fortunately, that job was followed by five months in a professional position where, from week two I was promised to be hired permanently; unfortunately, the employer failed to follow through on that agreement.

Gladly, my career has improved. The job I’m now in is contract-to-hire. In other words, if I do well, I get to stay! As I expressed to my therapist at our last appointment, the work culture suits me – introvert accountants, engineers, and computer specialists; extrovert project managers and sales reps. The job keeps me engaged, the Director of Human Resources has treated me “like a person” from the beginning, and with the exception of one negative but manageable Nelly my immediate co-workers are patient, kind, and no-nonsense. After her return from a long weekend, my supervisor asked how I had made out with the deadline from the week previous. Quite literally, she said she was impressed – that is, I had exceeded her expectation. Although not revealed by her, I had been my supervisor’s second choice to hold the position; no one would know it from her professional way of managing me. After five weeks, the job is going well.

As expected, making friends takes time. From law school, I retained one friend who no longer practices either; as an introvert, she is great company but not much help in meeting new people. I frequently visit my parents and nephew, who live six miles from me. One sister and I speak regularly by phone; on occasion, her husband or I make the three-hour drive. Every now and again, I visit a second cousin and his hobby farm. Also infrequently, I enjoy dinner or a group gathering with one college friend. Thankfully a very busy friend from a past home is able and willing to stop in for occasional layovers; two weeks from now, for the third time she’s coming for the weekend. Until recently, one good friend from yet another residence was an invaluable character in my life, including serving as my caregiver while I cared for D during her 20 months with leukemia. Another friend “had my back” during and after the hospital stay, but I see him seldom now. I participate in MeetUp groups (organized and RSVPd online; attended in person), which typically are enjoyable but so far, no friendships have developed. Throw in a few more relatives, their acquaintances, and Facebook – and there’s my social life. In no way do I want to understate my love and gratefulness for all in my life. It’s also true that this social creature needs more to sustain me.

Friends and friendliness can come from unexpected places. Within the week from departing the hospital, I found myself at a local NAMI (National Alliance on Mental Illness) support group. Although there were locations nearer to my parents’ house where I was living at the time, for some reason I chose a meeting that took two hours via three bus rides one way; I was motivated! That choice proved to be divine intervention; it’s the first NAMI peer support group I tried and by far the best one in meeting my needs. This group has become my anchor of sorts. Week after week, they have seen me through two psychiatrists, a number of changes in medications, fears that a professional job was never destined to come my way, the difficulties in mid-age of living with parents followed by being asked to leave, regret and pain over difficult relationships with step-daughters with whom I no longer communicate, the loneliness of an insufficiently fulfilling life, and even the inability to sit still for an hour and a half. Our discussions cover topics both related and unrelated to mental illness – from the frustration of being treated like a patient by family and friends to the sadness of a friend’s wife placing her husband in a long-term facility. In addition to the peer who advised me about an available psychiatrist, an accountant in the group offered advice and referrals in accessing work and upgrading skills in my field. One peer and I routinely spend winter Saturday mornings walking around a local lake. Another peer – a gay man who came out of the closet at an older age – started asking my advice as he rejoins the dating world. Although our NAMI group is not among the two in the area specifically designated to support LGBTQ adults with mental illness, the concentration of queer peers in our group far exceeds the 10% estimation of the general society. (When I asked why that might be, my therapist responded that stress tends to push the predisposition of a mental illness to its manifestation and diagnosis.) After a weekend of training, for the first time I officially co-facilitated the peer group along with a woman new to our group who thankfully suits our unorthodox style. She also happens to be a poor black lesbian with multiple mental illnesses who writes poetry, is direct, and has a sense of humor; something tells me she has a lot to teach.

And now D is back. Not in body but in the ways that count.

Peace is a creation – a gift to and for others and ourselves. Quite literally, peace brings love. I imagine the same applies to living beings.