Monday, February 2, 2015

What Death Teaches About Life --Loss of another ALS Warrior and a Dear Aunt

Every time I lose someone to death, I am reminded of some very important lessons about life. One of the most important of these is the tenuousness of life.  In the eleven years since my diagnosis, I have personally known many who have died unexpectedly.  Some never seemed to be sick a day in their lives, and some had chronic illnesses and died of something else.  Some were older, some middle-aged and some young.  And that is why it burns me up when I hear "I don't know what to say to you because if I tell you the good things happening in my life, it might make you feel bad"  Not only do I not begrudge anyone happiness; but I also know that these people have to enjoy life now because you never know what will happen tomorrow. Anyway, Renee Lo Iacono said it better than I ever could, in her Huffington Post article "4 Things Death Teaches Us About Life" 


Around  the new year, I lost a dear friend and fellow ALS warrior.  Pictured above, Norma Steck-Hess was a special person.  For 30 years, she was an ER nurse at St. Luke's Hospital in NYC.  There are many theories as to causes of ALS.  One theory is that stress brings on the change in the motor neurons that triggers the disease.  I can't think of any job more stressful than an emergency-room nurse.  Anyway, for most of Norma's adult life, she was a single mom.  But in her 50s, she got married to Bob.  Well, she was diagnosed with ALS a year after they married.  Imagine finally finding love and marriage after retirement and planning a life of enjoying a new spouse and travel and relaxation, only to be diagnosed with a disabling disease a year later.  Norma became a good friend to me, befriending me at my first MDA/ALS support group meeting. I enjoyed many pleasant afternoons and even a Christmas celebration at her beautiful home in Flushing and when I had a problem with a mean VNS nurse, Norma wrote a letter that changed my life.  She knew the CEO of VNS and wrote a letter scathingly condemning the nurse's treatment of me, and lack of understanding of my disease.  From then on,  a sadistic nurse was eating out of my hand.  I was forever grateful to Norma and her support.  In the last few years, I didn't see her because she lost use of her hands and didn't feel comfortable using her eye-gaze device.  I actually suspect she fell into a grave depression.   I will miss her; all in all, she lived 15 years with ALS, which is above and beyond expectations [most patients lose their battle within 2-5 years].  I have learned an important lesson from her death, which is to never lose touch with anyone, even if they seem to be dying.  Yes, it's scary because eventually you will have to mourn them, but eventually if you live long enough, you will mourn hundreds of people, including some you never dreamed would pre-decease you.  I regret not making more of an effort to connect with Norma -- even with a family member -- after she stopped communicating on a regular basis.  Even a monthly card sent to her house expressing that I was thinking of her and praying for her, would have gone a long way.  I shortchanged Norma, but made a promise in her honor, to send more written notes and cards to people via old-fashioned snail mail.  Email is a great invention, but there are still people who cannot or will not use it.  When Norma could no longer use a computer, I should have made more of an effort to reach her, even if she could not reciprocate.

Another loss was my mom's sister Vicky[pictured above on the left; that's my mom Ruth at right] on January 2.  My mom grew up very poor.  Her parents emigrated to the United States in the early 1900s from Austria, and settled in Brooklyn by way of Minnesota. Thank goodness my mom was forever telling us stories about her family, and since I have a good memory, I really should write them down. Vicky was not my aunt's real name; her real name was Elsie.  But she changed it to Vicky and only as a young adult did I find out her real name and promised my mom that I would never tell Vicky that I knew.

Vicky died at 88 years old; my mom would have been 83 if she were still alive.  Basically, my maternal grandmother gave birth roughly every two years.  My mom once told me she only remembers her mom either pregnant or nursing.  And to my knowledge, all the babies were born at home.  My mom and I used to watch old movies together and one of the movies we loved was "A Tree Grows in Brooklyn" -- my favorite book by the way -- and there is a scene where Francie Nolan's mom gives birth at home and asks Francie to boil water and go fetch the midwife.  I was shocked when my mom revealed that she could relate to that scene, because that is exactly what happened in her own house.  They would send my grandfather and my mom's brothers out of the house and the girls would stay with my grandmother during labor,  but they would never stay for the birth.  The gaps in the two-year intervals of births, were babies who died.  I seem to remember there were two babies who were born alive and died as babies, and my uncle Sol died of leukemia at 12.  They say women were accustomed to losing some of their children back in those days, but I don't believe they ever got used to it.  The stress must have gotten the better of my grandma Frieda [Fanny], my namesake, because she died of breast cancer at 50 in 1948,  just weeks after getting her diagnosis.

Getting back to my aunt Vicky,  she was a longtime employee of the famous Roseland Ball Room, which is featured in many films from the 1940s and 1950s.  She never married until her 50s.  When I was 29, I learned that she gave birth "out-of-wedlock" when I was 10.  That explained why we never seemed to see her after that; she gave birth to the baby in a "home for unwed mothers" since single motherhood was a shameful thing in 1965.  Until then, I slept over my grandfather's house in Bensonhurst, Brooklyn many Saturday nights when my parents went out.  My grandfather's house also had the unmarried siblings of my mom living there -- my uncle Simpson, my aunt Sylvia and my aunt Vicky [and my aunt Lynn between marriages] because back in those days, single children -- even adults -- stayed with their parents when they didn't marry.  Anyway, I loved those sleepovers because the next morning, aunt Vicky would always make me pancakes with Log cabin syrup and then take me to Nelly Bly Playland, where we would go on the rides; then we would go to the local playground and swing on the swings.  Because Vicky was so pretty, all the men would hit on her, but she would tell me to go along with the story that I was her daughter so they would stop bothering her.

Vicky married in her 50s to a local policeman named H.  I never met him, but I saw pictures of him.  He was a good-looking gray-haired man who apparently was fighting his own inner demons.  Shortly after they got married, my aunt Sylvia moved out to Mission Viejo, California near San Diego.  My mom and I took a trip out there in 1987 to see my aunt Sylvia while I was still working at Aeromexico and had my flight benefits.  Vicky and H. had also moved close to her.  Years earlier, my uncle Irving had moved his family to Huntington Beach in Orange County, so he was the one who got Sylvia, Vicky and H., and later on my Uncle Simpson settled with the long-distance moves.   During that trip, my mom and I got to hang out with Sylvia and Vicky.  During this trip, he was in Brooklyn so I still didn't meet him.   I now know that alcoholism is usually a way of "self-medicating" an often-undiagnosed mental illness such as bipolar disorder, depression or even schizophrenia. In the 1980s H. was in recovery from his alcoholism.  Because he was a retired cop and worked as a security guard, he had a legal licensed gun at home.  And quite shockingly, he used that gun to commit suicide with my aunt Vicky in the next room.  Vicky was never the same after that.  Such is the pattern of suicide -- when the plan is in place, the patient seems to be in great spirits, and the ones left behind in the cloud of helplessness and shock, are left to suffer seriously.  Vicky moved in with Sylvia and mourned H. for the rest of her life.  One day after my uncle Simpson suffered a heart attack and Vicky, Sylvia and Irving came to Brooklyn to be with him,  I took Vicky to McDonald's on Kings Highway and she relived H.'s last morning with me, while pulling out of her purse a worn and tattered copy of H.'s typewritten resume.  I knew at that moment that she would never get through the trauma and would forever suffer from PTSD,  like an eternal veteran of a war none of us could never understand.

When I think of Vicky and H., I wonder how she lived so many years after he left this world.  Was it a blessing or a cruel curse?  and I think of Norma and myself, struggling so hard to outlive a death sentence imposed on us by a disease and the medical profession.  

Addendum:  I have since removed certain sentences from this story and used only the first initial of my aunt's husband.  I received angry comments from the daughter of H., accusing my aunt of some very disparaging acts.  When  changed the URL of this blog, all comments disappeared, and I found it best that this happened.  There are two sides to every story, and my side is that I lost a loving aunt, who -- like all of us -- was far from perfect.  But -- in the end -- this is my blog and it is written from my point of view.  Out of respect for someone who isn't here to defend himself, I made certain adjustments, but I am not obligated to present a view of my aunt which disparages her memory.

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