an illustration of a variant of the tale (Photo credit: Wikipedia)

2013 was a very full year for me and mine. It was a year that will perhaps help to define us for a lifetime. We are not strangers to difficulty in fact we often marvel at the statistical odds in play in the life we have lived. Murphy’s Law is never far from your sight when you live a life that reads like fiction but is instead your reality. But 2013 was special in that respect. We have buried loved ones unexpectedly, losing parts of ourselves to cancer and more direct forms of random violence. We have had our economic foundation stripped and watched as our “normal” lives were put on hold as we endured one trauma after another. This has taken a toll on us and ultimately helped to remind us of who we are, where we are, and what we must do to achieve our dreams of prosperity and abundance.

We have been lead to consider what prosperity and abundance mean and found that we are blessed in many ways. Our interconnectedness has been a source of struggle and our saving grace. We have each other to lean on, to learn from, to encourage, to cherish and to protect. We are trying our very best to be a strong and positive influence in the circles in which we travel. We have tried to be self sufficient and we have embraced those who have showed up with love and compassion. Our family is larger than our immediate blood line.  We are very aware that 2013 was a brutal year for a lot of folks we loved. Most of them kept their problems to themselves and showed up on the road building and searching for the way to go on. There was not a lot of time for crying although there were ample reasons.

In 2013 we were forced to step up in life. We were asked to endure the unendurable, face our greatest fears, learn to have faith, and learned that something worst can always happen. This year could have broken us. Indeed there are signs of wear and we sit collectively in prayer for some of our collective. I continue to pray that we are strong enough to provide a shelter of love for those of us who have been severely impacted by a year that tested our mettle in ways we were not prepared to engage.

Death is a thief. He is never welcome even when we know he’s in the room. Even when he sits quietly for months or years slowly inhaling the life from those we love. He is always gifts grief. Grief has no rules with the exception that it must be experienced. It will not allow itself to be regulated. It will sit with you until you find your way through its vast weight. Meanwhile life goes on. We had not worked our way through the senseless murder of young men in our collective before we realized my husband was ill. After we became aware of the potential seriousness of his illness our house caught on fire.

We came home from a round of appointments with specialists to discover a heater downstairs had caught fire. It happened at the end of March. The pandora’s box that it opened set the stage for other travesties. We found out that our remodeled rented home had been renovated without the proper permits. We lived without hot water, a stove, lights, heat, and no laundry facilities as we fought with the landlord to relocate us while he made the repairs as prescribed by law. He refused. Meanwhile the round of appointments with doctors to find out what was wrong with my ailing husband picked up momentum. So my days were spent trying to determine what was ailing him and why he showed no sign of improvement. At this point we were sure that the cause would be determined and he regain his health. My time had to be divided to allow for the endless wrangling with the landlord to no avail.

We resorted to paying a neighbor to run one electrical cord into our five bedroom rental so we could survive albeit it barely. We cooked on a hotplate. We bathed by heating water in the microwave. We boiled water on the hotplate to warm the house. We took our laundry to the laundromat. We stopped eating properly and ate to stave hunger.  We were miserable. It was cold and it was dark and it was our lived reality from the end of March through the middle of September. I walked the stage for my PhD in May after bathing from a bowl and we returned from the festivities to a cold and dark home where we were fighting to be treated like human beings. My husband’s condition still showed no signs of improvement. He was not able to see me get the degree he had selflessly held me down to complete. He wa my biggest cheerleader. His belief in my ability helped create the space in me to believe in myself. But he did not physically see me cross the finish line or deliver the speech that put my the faculty, graduating class, and their families on their feet in appreciation.

He had lost a great deal of weight, his energy was gone, he found no solace in his research projects or his writing.He was prescribed medicine for a stomach parasite. The medicine seemed to make him worst.  He could not eat. Everything caused stomach upset. He threw up everything and eventually quit eating more that a bite or two of anything. His weight plummeted. His clothes hung from him. He spent most of his time in bed.  After a trip to a specialist in gastronomy  he was scheduled to see someone at the Oakland VA facility. He liked to brag about the quality of medicine provided by the governments for veterans although it was harder to get him into a doctor’s office than to make snow in the oven. He loved to say no one ever had to wait over a half an hour to be seen for an appointment.

He could only sit up for short periods of time at this point and was in general agony he could not pinpoint. The magic half hour finished and he was finding it difficult to continue waiting. He asked me to inquire about who he was to see and what was taking so long. I discovered he was scheduled to see a dietician. It struck us as odd. We could not find a connection between diet and his failing state. We were more concerned about his not being able to eat that the nature of what he ate.  After waiting for over an hour and puzzling over why he was scheduled to see a dietitian he testily demanded information as to where the dietician was and why he needed to see her at all. My husband who was normally a quiet spoken man who allowed his wit to communicate his ire had reached his limit. His loudly stated displeasure brought the missing dietitian from her office and into the waiting area that we had camped out in now for close to an hour and a half. The VA has a stated policy of no aggression. Loud voices bring security guards. As they approached the small woman in front of us admonished him to lower his voice and in a scolding tone informed him that he had cancer and his diet was crucial to his recovery.

We had been chasing a diagnosis. We lived with a spectre whispering in the dark. Each appointment that spawned another appointment amplified the whisper. We wanted to know what was wrong but this was not the way we had anticipated an answer. I lit into her with all the frustration I had been tamping down for months. Somehow the fact that he had not been told what the doctors had come to suspect had escaped her. We now knew the name of our enemy.

In late June is was formally diagnosed with cancer. They raced to find the type, stage, and extent of the advancing enemy. They predicted a possible  melanoma. They talked about the cure rate for melanomas. Then they found that we were not that lucky. He had esophageal cancer and it had spread extensively. When they staged the cancer we were informed that it was stage four but with aggressive treatment he might live two years. He was relived. He felt that two years was a blessing. He could accomplish some things and push the specter whispering in his ear into a corner for at least a while. We made peace with the facts and decided how to move forward.

Inside a week further test revealed the intruder was much further spread than originally thought and he was given two months to live. We struggled to adjust our expectations and settled into war mode. He executed a living will and I became his partner in a fight for quality in what we now accepted was the end of his life.  He began Chemotherapy and was moved to a facility to stabilize him for a surgery that would allow him to come home to die.  We prepared the small apartment he wrote in for his homecoming. He could not come to a house where there was no power . So he would live his life out in the place where he spent a great deal of time hiding from life nursing the wounds his soul suffered in Veit Nam and writing some of the  erudite critiques of capitalism and systemic failure as a champion of oppressed people everywhere. He was a historian with a mind for facts and movements. He was a teacher and the best kind of activist: intelligent and steadfast with a deep love for justice. He would return to a place he could be at home and finish out his race.

We called his dearest friends and he began closing out conversations and making his peace. We were planning a living memorial for him where he would gather his friends and say goodbye to each of us a final time. Within the week that he moved into the VA facility additional test were ran. We were advised to speed up the plans for the memorial. We were told he had at most two weeks to live.

He faced the specter with such grace it hurt to the core to see how much he loved us. He stopped complaining of any discomfort. He greeted us with kindness and the most astonishing compassion I have ever witnessed. His grace in the face of death gave us a bar to live up to in his final days. His bravery and strength helped me as I walked with him and fought the landlord in the house where we had lived in the cold and dark for four months now. I spared him those facts as it could only burden him and as he informed me he was busy discovering that dying was harder work than he had imagined.

I stopped working in October of 2012 to hunker down and get the final work for the doctorate done. His support was the tipping point. I did not know then that we were going though a series of last things. His last fall. Our last holidays. The last times he would sit in the small theater they built for me and smile with satisfaction as his step kids and I made magic out of raw talent and odds and ends. The last times he was vibrant and himself without the specter of death in the room.

We had his living memorial. It was his last good day. In the small space left us I felt the pressure to find a way to carry on in the grim light of his pending death. The dream for the year 2013 where I would take the time to reinvent myself after graduation slipped away and I faced trying to find a way to continue our lives without the time to plot a direction. All of this sat in the room with me as I decided to direct my summer theater camp as usual. My theater troupe was in the midst of final rehearsals for the first play of our season.  I worked out of necessity and to find a place with even ground as the world tilted and sent my life into a far corner out of reach. My routine was hospital, fight the landlord, go to rehearsal, go back to the hospital, sleep a few hours and go to work and do it all over again the next day. One morning after leaving the hospital I got a call telling me he was being moved to hospice.

On July 20th, 2013 a waxing moon was shining in the day time. He died that night as his son and I sat with him. There was no moon that night. It was as if he had taken it with him. The next night the moon was full and he was with the ancestors. I sat on the porch of my dark house looking at that moon and wondering how to find the where with all to arrange the funeral of a man I had known for almost thirty years. The fight with the landlord raged on we continued to live in the cold and dark. People went to school. I went to work.  We did the first play in over a decade my husband did not attend. We completed his arrangements and picked up the pieces and went on. No time for grief although its the herd of elephants in the room. We transformed ours into iron will and looked for an attorney to bring the landlord to heel. We went into rehearsal for our final production of the season. We lost the taste for complaining about our living conditions we instead worked on making sure we were staying in our lane. We build. We pray with our hands moving.

We lost the backing and our venue for our final production. Along with it went a desperately needed paycheck. The landlord filed suit to evict us from our house rather than negotiate in good faith to relocate us. It seems we pissed him off when we refused to sign a document giving up our legal rights to address his actions in return for being relocated. In court we accepted a small sum for relocation and agreed to move out for ninety days so repairs could be made. Our vigil for justice ended on September 15 2013 six months after it began. The agreement was not perfect but we had to move forward somehow. We arranged for ninety days of temporary housing and put our world in storage. I continued to work trying to locate funding to pull off our final show. I needed work in order to make sense of what was turning into the hardest year of my life. It was satisfying to pull the production off. In fact it was validating to me to understand that I was capable. The production’s huge success was a bright spot in a river of dismal. It reminded us of what happy felt like. It was easy to forget in the year past. It also made it easier to keep grief in the drawer. We were still in the storm. The show closed November 30th. We started to prepare to return home.

We checked with the landlord in the week we were to return to find the house was not ready even though our temporary housing was done. So after moving our things into storage a first time we now needed additional storage and a new place to live for an unspecified time. The landlord requested an extension from the city on Christmas
Eve. We spent Christmas and New Years eve in a two star hotel watching the hard fought for paycheck and the last of our savings go down the drain.

Today is New Year’s Day 2014. We made it out of 2013. We are still here. Still standing and daring to dream that the good sometimes win. We learned a lot. We are resilient. We value one another over comfort or material accumulation. Our work ethic is strong. Even when challenged we stay in our lane. We fight for the lives we want and we don’t quit because it gets tough. We are hard to kill and we are determined to live even though we have discovered it might be harder than we imagined it would.

The future is uncertain. But we are certainly up to the challenge of finding our way. We are grateful. Grateful to still be. Happy 2014. May it be amazing for us all. May we find the strength to answer our challenges and stay on the path rocks and all.

In Struggle,

WordSlanger

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