More than My Diagnosis 2

Ellen, 68, and Elizabeth, 37, share their stories of being more.

I Am More than My Diagnosis - Elizabeth, 37

On a yucky gray, typical Pittsburgh afternoon, I drove down Halket Street towards Forbes Avenue and the Oxford Building where I was scheduled for an appointment.  I had cried most of the way, and I called my sister and a friend for moral support.  I needed it.  The way became more depressing as I drove, and it wasn’t in my imagination.  The sidewalk in front of the ancient apartments on the University-side of Halket Street had been torn up and was being relaid.  Construction tape and netting intruded into the right lane of traffic, narrowing a road which was already inadequate to accommodate the amount of traffic that traveled to and fro on it.  Patients from Magee Womens Hospital, employees of UPMC, and students from the University of Pittsburgh drifted in and out of traffic with little regard to the fact that cars usually win in one-on-one matchups with people.  I longed to pull into a parking lot and turn around.  I might have if they weren’t all under construction.  

A year before, I had begun to consciously record when my moods hit and recognize how I controlled them.  I was impressed with my abilities to manage myself, and I thought I could continue to do it alone.  This spring, I caught myself self-medicating with alcohol.  This summer away from home, I caught myself, despite all of my preventive measures, formulating a plan to poison myself on a sunny afternoon, having completely forgotten that my family existed.  Two weeks later, I determined to put the experience on paper as a lesson to my children.  Two weeks after my return home, I shared that story with a friend.  Fourteen days later, I left a message asking for an appointment.  One month after that, desperate because I was headed for one of those lows, I finally found a place that would take me.

Turning right on Forbes, I pulled into the left lane and passed perhaps the most run-down section of Forbes Avenue:  an ancient Arby’s which seems perpetually filthy and a Marathon gas station which never seems to have any cars at the pumps.  I waited for the pedestrians in the crosswalk before easing my car left onto McKee and then immediately right into the dingy garage underneath 3501 Forbes Avenue.  I stopped the car in front of the valet station, and the valet held out his hand for the keys.  I didn’t want to hand them over.  I briefly considered crawling back into the car and reversing right out of there.  I even pictured it in my mind and decided I’d probably break an axle on the drop from the curb to the street.  Instead, I put the keys in the valet’s hand and climbed the ramp into the lobby of the building.  Except for the fact that one elevator was under construction, the lobby showed signs of being hospitable.  Anonymous waiting bystanders sat patiently on cushioned benches along the garage wall, and the sun streamed in through the windows fronting Forbes Avenue.  I joined a small crowd clustered in front of the two working elevators.  I hate being in elevators even one second longer than I have to, but when I climbed into the elevator that day and pressed the three, I almost wished it might get stuck on two.

My feet would have preferred to stay on the elevator, and it took force of will to push one in front of the other and toward the dingy gray door of the clinic.  Unlike the spacious lobby, the third floor seemed to telescope with each turn leading to a narrower hallway of dead end.  The white walls had long ago ceased to be white and now took on the earthy tone of handprints from years of unknown passersby.  Reminding myself with effort to breathe slowly, I opened the door and went inside.  The receptionist smiled at me and handed me paperwork.  I turned to sit down in one of the padded metal chairs in the waiting room.  Two women at separate ends of the room cried silently.  The man at one end held his head between his knees.  The woman across from me spoke animatedly to the empty chair next to her.  My whole face tightened and the space behind my nose grew hot as if I might cry.  Was this really necessary?  Did I really need to go?

My chest seized up and my lips threatened not to work.  The thought of confessing that I needed something more than willpower to fight the coming darkness terrified and angered me.  Couldn’t I do anything I wanted?  Wasn’t I capable of conquering all things with ambition (if you listened to some) and through Christ (if you listened to others)?  Ah, but there’s the rub.  Sometimes, conquering means doing it all yourself.  Sometimes it means asking for help.  I glanced at the people sitting there.  If they could do this, surely I could too.  But this train of logic certainty didn’t keep me from considering, if only for a moment, running out of the waiting room when they called my name. 

A therapist in street clothes ushered me into a dark narrow room where he sat in a swiveling desk chair that didn’t have enough space to allow an entire rotation without hitting either the desk or the book case.  Sitting in a chair that face the bookshelf (there wasn’t enough room to face the therapist), I forced myself to repeat my story for a man who didn’t completely look at me, didn’t speak, and whom I didn’t completely trust.  To be honest, I felt more like I was repeating my story to David Burns’ Feeling Good and The Bhagavad-Gita As it Is.  I grudgingly told about my six week cycles, their predictability, their strength, and my enormous frustration that I, who plan and control every aspect of my life to the degree that some friends call me a contingency-contingency planner, had to sit before a stranger and recount the aspects of my mood that I couldn’t control.  I confessed that I had moments of hopelessness when I forgot everyone in my life and contemplated throwing it all away.  I explained that I knew I was loved, but it wasn’t enough.  Even as I admitted these faults, most of me wanted to turn around and succumb to the low moments rather than bring them out into the open.  I never wanted to come here.

But I went anyway. 

I went because the highs are so high that my family flees from me, because with their residual anxious edge they were threatening to take my drinking from social and relaxing in function to escape.  I went because the lows are so low that I was afraid that someday I wouldn’t be able to find my way up again.

But more importantly, I went because I am more than the highs and the lows.  Yes, I am the highs and the lows, too, but I refuse to let them eclipse the rest of me:  the mother, the wife, the friend, the artist, the writer, the thinker, the very slow runner, the terrible parker, the loud but slightly off-key singer, the lover of laughter, and the addict of a good story.  I went because I am more than bipolar and because I love that part that is more.

The medication began to help immediately, and that made me angry because it showed that I really couldn’t just control everything with sheer willpower.  And it made me tired because I could suddenly deal with issues I hadn’t dealt with before.  They were new.  I wasn’t healed, cured, or without any symptom, but I could manage.  I was better in the form that I was not as bad.  Instead of ignoring my children, I could listen. And what I heard broke my heart.

“Mommy, don’t you have time to play today?”

“Mommy, don’t you think you worry about this a little two much?”

“Mommy, can I just have a hug?”

And now I could do those things.  They exhaust me, but I do them.  And I was astonished by the change.  My family wants to be close to me!  They ask for and enjoy my attention.  My friends enjoy being with me.  They have as much fun as I have.  Maybe people have always been this way, but when my world was so filled with worry, when emotions had to be guarded against because they burn and threaten to sink me completely, I had never felt, never let myself feel, love and companionship before.  There was always a barrier, always safety-glass.

But a few weeks after I began the medication, something began to change.  Instead of knowing I was loved, I began to feel something—a strange tightening in my chest, a lift of the shoulders, a pricking in the corners of my eyes, a closing throat, a burning sensation high in my nose.  At first these sensations didn’t make sense.  Should I cry because the grass is green, too green, or the sky is blue, too, too blue?  Gradually the feelings began to separate.  Tears didn’t come all the time any more.  But the lift of the shoulders happened more often, and when my niece blocked the door on my visit and cried, “No, Auntie Beth, stay!” I felt the warmth spread in my chest and a smile that started from the catch in my throat and not the prefrontal cortex of my brain spread across my lips.

I didn’t know I was loved; I felt I was loved.  And I am committed to being that loved one, returning that affection.  I am more than bipolar disorder; I am me.

A Good Start - Ellen, 68

“Good morning, Martha,” I say to begin our day. 

 “How are you, today, Ellen?” follows. The day is off to a cherished, predictable start.

Every morning at 7 AM, the phone at my house rings to Martha’s wonderful voice. It is wonderful to me because she is my early morning, phone soul mate. Martha would disagree with me about her voice’s being wonderful because she has an essential tremor, a neurological problem that is displayed in her vocal cords as well as the rest of her body. She also has spasmodic dysphonia, which changes the quality of her voice. She is very sensitive to the fact that her voice no longer has the full, rich sound it once had. But, to me, her morning voice is just a treasured way to start the day.

We blah, blah, blah for an hour or more every morning, somehow always having something to talk about.  

Our morning conversations began in May of 2011 when Martha retired as a college professor in educational leadership and communications at Carlow University. We initially knew each other as colleagues and Shadyside buddies prior to retirement. I had retired a year earlier from the education program at Carlow. Now, with retirement, Martha was free to engage in this daily conversation.  We just fell into this pattern.

Because I was reading ravenously at the time, we began discussing books.  I was reading Sara Lawrence-Lighfoot’s, The Third Chapter: Passion, Risk and Adventure in the 25 Years after Fifty. It was a passionate book examining the retirement of passionate people. It was a perfect springboard for discussing our respective retirements. Both of us were searching for ways to make meaning of life after a fulfilling life of being an outstanding, dedicated college professor. The book was a qualitative study using portraiture through interviews—right up our research alleys!

We also discussed Hilary Rodham Clinton’s memoir, Living History, of her life through Bill’s White House years and to her becoming the senator from New York.  We discussed her great intelligence, her independence, her gutsiness, and her passion for fighting for what she believed in like universal health care.  She was our kind of woman and politician.

Most importantly, any intellectual interest that either of us had that was open for lengthy discussion. Martha brought up her search for “a need for a sense of purpose” in what she did in retirement. I lived on a more basic level and looked for fun!  I enrolled in lifelong learning courses at the University of Pittsburgh—I loved learning and being in the classroom. Martha would have none of this. We wrestled with this topic in terms of my love of being a student and her having enough of that role. We talked on, daily.

Then, Martha’s disease reared its ugly head reminding her, and us, that, while it had stepped aside for a moment to give her a breather, her illness was a constant part of her life. While Martha does not complain about the pain, generally, it becomes excruciating at times.

 Martha got sick with an autoimmune disease, Sjorgrens Disease, ten years earlier, but she has been a fighter over the years. She continued to teach as long as she could even though in great discomfort. She will go out to dinner every chance she gets if that is at all possible. Sometimes she is vulnerable to picking up viruses and infections and thus could go out. Several years ago, she received a few doses of chemotherapy. They worked. Martha was in a holding pattern where things are not as bad with her illness! We—her family and her good friends—celebrated!

But the disease recurred, and Martha became preoccupied with it. Who wouldn’t?  Martha was also struggling with her own mortality issues. We continued with our conversations. I mostly listened. In a relationship, in a close friendship, things are rarely reciprocal in the immediate. Over time, things balance out. My job as a good friend was to listen for an hour or so daily as Martha processed her life with her illness. I just knew that when I needed it, she would do the same for me.  That’s what friends do. It was not always easy, and I could not always be the best friend that I wished I could be. At these times, I would change the subject of our phone conversation to a topic other than her health. Martha understood and accommodated my needs too. After many, many months, Martha’s illness went into stable and holding again, and our discussions moved on to other topics.

Sometimes the conversations dealt with the weather in Atlanta, Milwaukee and New Hampshire—places where Martha’s children or grandchildren lived. Sometimes the weather of Florida or Colorado was of interest because we knew my sister, her sister and my friend were living there. Sometimes the snow storms were simply in the news and worth discussing.  Light conversation counted too for keeping this phone friendship alive too.

We were known to disagree from time to time. Martha was the rhetorician by trade and loved a good argument. I avoided arguments when I could, did them badly and felt great anxiety throughout—and anger too. One day, I told Martha,  “My friend, Dick, was very sad because he sent a notice to a friend of 60  years and the friend never replied. Dick feels as if it shows that his so-called friend did not approve of a gay marriage.”

Martha began, “Maybe he never got the email. . . .” She gave about 15 possible reasons why he may not have responded. To me, Dick needed a supportive friend. End of story. To Martha, all avenues need to be examined. I changed the phone conversation quickly because of my anger, annoyance and discomfort, but that is my need not necessarily hers. Oh, well . . . . Friendships can be complex. 

Then it was my time to face a crisis, and Martha responded as the phone soul mate that she is.  I had become involved in a highly stressful writing workshop and was being challenged to the limit with my emotional health issues. She respected my feelings. I was falling apart emotionally. She frequently stated, “I find it unbelievable that the leader was so careless about the participants’ feelings. He was hired to exhibit his ability in writing and is a highly skillful writer, but he was so uninformed about psychological space and psychological safety in the workshop.”  Martha was supportive as she told me. “I am so sorry that you went through this. You had no idea what you were getting into. You entered into this activity in good faith.” Martha’s wisdom and insights, as well as her empathy, helped get me through this most severe emotional crisis I have experienced in 25 years.

Martha and I proceeded to use this workshop as a springboard for a discussion of teaching, our passion. “This makes me think of the traits of training through a workshop format, being a facilitative teacher, and providing for a safe space psychologically in the classroom as we developed skill-building,” Martha commented.  Our conversation began.  Martha and I were both excellent at moving from stressful conversations to ego-building conversations and talking about teaching did this. We were familiar, at home and happy as we conversed about teaching. Martha helped me grow strong again over the days and weeks of conversation.

It’s only 6:30 AM as I find myself completing this essay on my telephone soul mate of two and one half years. Soon it will be 7 AM, and I will hear the phone ringing. Martha and I are more than the sum of our diseases. We are friends, the lynch pin of a human community.

“Good morning, Martha.” our day will begin.

 “How are you, today, Ellen?” will follow. The day will be off to a cherished, predictable start.

Halloween

Elena, 90, and Marlene, 72, share their stories of Halloween.

Halloween 1950 - Marlene, 72

My brothers and I always looked forward to the annual Halloween parade and party in New Wilmington.  We had won forst prize 2 years in a row, with a nice cash prize.  We were a wedding party consisting of bride, groom, and flower firl.  My older brother was the groom, who was dressed in black pants, white jacket, bow tie, top hat, and boutonniere.  I wore my mother's satin wedding gown, which she had cut down to fit me,  and a veil for my head, and I carried a bouquet of fresh flowers.  My younger brother wore a flower girl's dress that I had worn in a real wedding when I was six-years-old and a fancy head covering, and he also carried a small bouquet of fresh flowers.

My older brother and I thought the parade was such fun, but my younger brother, Gerald, was not a happy camper as he had to dress up as a girl.  He was teased by his siblings as we referred to him as Geralding.  The prize money did soothe his pain.

After the parade was over, the fun began.  New Wilmington is a small college town (Westminster College), and it seemed like the whole town turned out for the festivities.  There were hay rides, apple-bobbing contests, and pie-eating contests.  Music flowed through the area, and people danced in the streets.  Picnic tables were set up, and hot dogs, cider, and candy apples were sold and enjoyed.

When I think back on this event, I realize what fun it was for both children and adults.  There was no trick-or-treating and no vandalism.  The joy of a small town celebration!

My Earliest Recollection of Halloween - Elena, 90

I was six-years-old, a first grader at the Welsh Public School (the neighborhood school which is no longer in existence), a block away from home in Philadelphia.  My mother bought me a Russian dancer costume for Halloween.  It was a costume with a beautiful tiara and black boots with gold braid.  I dressed up and went to school that day in the afternoon session and sat in my seat.  Then in came Sonja dressed as a Dutch boy with wooden shoes and a cap over her short, very blond hair.  Miss Polina, our teacher, made a big fuss over us.  She pretended she couldn’t guess who we were.  She called other teachers and the principal, Mr. Parks, into the room, exclaiming the whole time that she didn’t know who we were.  It was very exciting for both Sonja and me.

Later that day, Mr. Parks called us into his office.  He had this large basket of fruit, and he sent a teacher with us to visit the local banks and other neighborhood business offices to offer them some fruit.

We drew everyone’s attention, and everyone admired our costumes.  It was such a fun day and a Halloween I will never forget.

Nature 2

AJ, 7, and Elizabeth, 37, share poems about fall.

Fall - AJ, 7

Fall is wonderful.

Acorns fall down from trees.

Leaves change colors.

Lots of squirrels run around.

I like fall because I can jump in leaf pile.