Out of the Shadows-Talking about Death and Grief

I have mentioned in previous posts how people become very uncomfortable around grieving people.  Oh, they can accept the prescribed amount of public mourning but after that they want the person to “get over it” because they no longer want to be faced with this uncomfortable subject.  I found a great quote by Lily Pincus, the author of Death and the Family: the importance of mourning and I agree with what she said. Pincus wrote, “Thinking and talking about death need not be morbid; they may be quite the opposite. Ignorance and fear of death overshadow life, while knowing and accepting death erases this shadow.” 

My experience has been that without the fear and attempts to ignore death I have an ease about life that I never had before.  It is not that I value life less, or value death more, it is that I see both as part of the same human experience and that acceptance has given me a peace that I never had before. Accepting death and life as equal has not stopped my feelings of loss and grief.  I think that is natural also.  I am left to live my life without the people who filled my days with love.

It is especially difficult without my son because I not only grieve for what I am missing without him in my life but also for the life that he was denied. Pincus also wrote about regression in grief and how it should not be seen as a negative sign but as a sign of healthy growth and adaptation. I think that is true too.  Grieving is not a linear experience.  There are starts and stops, stumbles and bumps, re-tracing of steps, plodding forwarding, becoming engulfed by the waves of grief, and then getting up and moving on again.  It doesn’t end at a prescribed time; it isn’t neat and tidy like many people would like it to be. It is a part of my life now and it's okay.

The Tsunami of Grief

I just finished reading an amazing book called “Wave” written by Sonali Deraniyagala. It is the story of her escape from the Tsunami in Sri Lanka in 2004, which also resulted in the death of both of her parents, her husband, and her two young sons.  It is also the story of her struggle with incredible grief– she talks about the good, the bad, and the ugly sides of her journey. Ultimately it is her telling of the seven year journey through her grief and how her life has changed in every aspect of her existence.

I found the book extremely raw and truthful in explaining the aftermath left for the grieving person to face in a world suddenly changed.  I also liked that Deraniyagala did not shy away from telling the negative and flawed ways she tried to deal with her grief in the early years.  I thought her story was compelling and I related to her feelings about no longer being a mother and how devastating and empty that can seem.

In her book Deraniyagala describes a time when she is on a plane with a woman who begins to ask her questions about her parents, is she married, does she have children?  Deraniyagala is not only annoyed by the stranger’s questions but also knows how devastating it would be to that person if she were to tell her the truth.  I understand that feeling. 

One time, a couple years after my son’s accident, I was visiting a quaint little store in my home town and the owner struck up a conversation with me because I was the only one in the store.  She asked if I had any children, and I hesitated, weighing whether or not to answer truthfully.  I don’t like the feeling of denying my truth so I explained to her that I had a son who had died in a plane crash.  She asked more questions about him and the crash and I answered her.  She began crying and now I was left with the task of comforting her and helping her to feel better.  As Deraniyagala writes, “I keep it under wraps because I don’t want to shock or make anyone distressed.”  It seems that it is a constant juggling act to decide when and to whom to tell my story even after all this time.

I also appreciated how Deraniyagala explained her life seven years after her loss.  She noted that she no longer felt the shock but she felt fully the absence of her family and her life as it would be now with them in it.  Deraniyagala stated that she realized that she was only able to be herself and live her life if she held her sons and husband close to her.  When she tried to distance herself from them and the loss then that was when she felt unsteady.  I have found that true in my journey also.  In the beginning years the shock would not allow me to feel my son’s loss completely but now I am able to embrace my son and his memory. 

It also was refreshing that her book did not end with her “new” life tied up neatly in a bow.  Although she is successful in her work and appears to have a good support system of friends and family she does not allude to having built a new family or home to take the place of the one she lost.  She leaves the reader with the understanding that she continues to feel the loss while she continues to move through her life.  I liked that.  It felt real and doesn’t give other grievers false hope or the worry of comparison of their lives as being “less than” and the worry that “I’m not grieving correctly or I would be…”  We all travel our own path; none is better or “more right.”  Deraniyagala seems to get that.

Grieving My Son...It is a Lifetime Endeavor

Last night I had a personal reminder that the grief wound may heal but the scar is always there.  I am in the process of “downsizing” my possessions in order to make a move to another apartment.  In an attempt to consolidate my boxes of memories of my son I decided that it was time to dispose of his middle-school yearbooks.  I don’t look at them and there isn’t anyone who wants them so I felt it was time to let them go along with many other things I had been storing.  I picked up one of the yearbooks and was putting it into the trash pile when two photographs fell out.  These photos were taken in 2003, about a year before my son died and I had never seen them before.  I can only guess that he put them in the yearbook to get them out of the way but I’ll never know.  The photo’s showed him looking happy and joking around with whoever was taking the pictures.  The one photo was of him standing at the stove of his apartment cooking up something.  Robert loved to cook for his friends and considered himself something of a gourmet.  The other picture was of him and his girlfriend at the time and they both were making goofy faces. 

It was a surprise that after 7 years I found pictures I had never seen before.  It was also a moment where I felt the pangs of grief for the life that was taken from him at age 24 and the future we would have had together.  However I also was able to appreciate the journey I have traveled through my grief. In spite of the sadness I felt I was able to smile at the young man in the picture and the memories of a time when he was so happy and creative and living life to the fullest.  I am so proud to be his mother.  I love you, Robert.

Two fathers started an initiative, the Farley-Kluger Initiative, in 2010 determined to amend the current Department of Labor FamilyMedical Leave Act (FMLA) to include bereavement leave for parents when their child, up to age 26, dies. 

At the present time the FMLA is a federal law that requires companies with 50 or more employees to afford their employees 12 weeks a year of unpaid time off for their serious health condition or that of their children up to age 18, spouse, and parents.  It also covers the employee after birth of a child or adoption placement. There is also a section related to military leave.  

The two men who began this initiative are both authors of books about their own grief journey after the loss of their children.  Barry Kluger’s only child, his 18-year-old daughter, Erica was killed in a car accident in 2001.  Kelly Farley’s daughter, Katie, and son, Noah, both died in infancy within 18 months of each other.  Kluger’s the author of A Life Undone: AFather’s Journey Through Loss.  Farley’s book is called Grieving Dads: To the Brink and Back.

After both Farley and Kluger’s lobbying attempts in Washington D.C. there has been legislature introduced in the Senate and the House to make this amendment happen. Currently there is a bill before the Senate.  However Farley stated that he was informed that only about 10% of the bills introduced are ever approved.  The two men have started a petition campaign online in order to get the word back to the legislature that people want this change.

I have mixed feelings about this amendment.  As a parent who was in this position almost 7 years ago my first reaction is that this is a wonderful change and is something that every parent needs.  The early stages of grief after the death of a child are so chaotic and life-altering that an individual’s focus is all-encompassed on dealing with the symptoms of the grief.  As I discussed in my previous post about grief in the workplace there are problems with concentration and memory that affect the worker’s performance and the probability of triggers that cause crying is always there.  This 12-week leave would give the grieving parent time to get past the most critical and intense grief period. 

However I am concerned about the employee whose spouse or parent dies.  These employees may have already been on an FMLA leave caring for the ill spouse or parent and once the death occurs the employee is no longer eligible for FLMA, has only the company’s bereavement time available (usually 1-3 days) and then must return to work.  This can be an awful predicament for an employee who is exhausted from being the caregiver for their loved one for weeks, has been experiencing anticipatory grief (I will discuss this in detail in a future blog) and is now in the full throes of early grief symptoms. 

Then there is the employee whose spouse dies unexpectedly leaving them with young children who are themselves grieving or the employee whose spouse had handled all of the household business and now the employee has to take over all of these responsibilities.  Both of these scenarios require concentrated time for the employee to be able to bring his or her life to a new normal and FMLA bereavement leave would be appropriated in these cases too.  Just as no one grieves the same, no loss is the same.  There is a general consensus that the death of a child is one of the most devastating losses and having experienced it personally I would have to agree.  However I also appreciate the fact that the initial grief after the death of a spouse or beloved parent can be a devastating blow. 

So, should this amendment be only for parental bereavement leave or be opened up to include the same criteria that the original FMLA covers and include spouses and parents?  In my opinion it should include these loved ones.  Most employees can not afford to take time off without pay therefore I do not believe that this will be an overused leave option which is the fear of opening it up to more reasons.

I would be interested to hear other people's opinions of this change in the FMLA.  What do you think? 

Elephants Never Forget and Neither Do Grieving Parents

An excellent book that explores life after the loss of an adult child is Our Walk With Elephants by Peggy Boon, Ph.D. and Bonnie Headington, Ph.D.  These authors have the distinction of not only being mental health professionals but also bereaved mothers.  One of their most salient points is the fact that bereaved parents continue to grieve over the years.  Once the acute grief is over there are reminders that happen daily, monthly, yearly, that awaken the pain of the loss. A reminder may be as simple as another child's college graduation, a wedding, or a birth.  All of these things will remind the parent of the events they will never experience with their child. The authors approached their need for answers as a research project.  They obtained participants and decided on questions they wanted to examine.  They then conducted structured interviews with the participants and the result is this book.  Although they took a scientific approach to the subject the book is a sensitive, narrative of personal stories of loss and common themes experienced by bereaved parents.

Knit one, Grief too

Ann Hood was a published writer prior to the unexpected death of her daughter, Grace, at age 5, from a severe strep infection. After the death of her daughter, Ann found like many of us have, that the problems with concentration during the early stages of bereavement made it almost impossible to read or to write. When those are the tools of your trade, or in my case reading was one of my favorite things to do to relax, and you are no longer able to perform them it is more than a little startling and unnerving. I wondered if I would ever be able to read a paragraph again. Ann wondered if she would ever write again.

Ann was no stranger to grief. Her brother, her only sibling, drowned in a bathtub when Ann was a graduate student. Soon after her sixty-seven year old father died after a six-month battle with lung cancer from fungal pneumonia. Shortly after her father's death, Ann experienced a miscarriage. Still even with the experience as a bereaved sibling, bereaved daughter, and finally her miscarriage, nothing prepared Ann for the extreme emptiness she experienced after Grace's death years later.

In her memoir recounting her daughter's death and the aftermath, Comfort: A Journey Through Grief, Ann talks about how people woudl often suggest that she write things down, express her feelings on paper, and this increased her anxiety with her inability to write and with their continued suggestions. Ann eventually found comfort in learning how to knit. Some people have written about the meditative effects of knitting and its almost healing quality.

When Ann was able to write again, a year and a half after Grace's death, she took her new interest in knitting and her knowledge of grief and blended them into a fictional book called The Knitting Circle. The book chronicles a story of a bereaved mother whose marriage ends after the child's death and the mother's discovery of knitting and a group of friends who offer each other the support and love that they each need.

Road Map for the Grieving Parent

The Bereaved Parent by Harriet Sarnoff Schiff.   Schiff was formerly a reporter, she has written two books on grief and has lectured extensively. She is also a bereaved parent. Her son, Robby, ten, died from complications after heart surgery. Her book is considered a classic guide for bereaved parents and has been recommended for years. In matter-of-fact terms, Schiff discusses the hard stuff and offers help for those who are suffering. She includes stories about her own journey and those of other bereaved parents. Her book is divided into easy to digest chapters discussing subjects such as bereavement and guilt; bereavement and marriage; bereavement and siblings; bereavement and religion; and the far-reaching bereavement and the rest of your life.

Schiff talks about taking small, positive steps even during the beginning stages of grief. Schiff gives examples for these small steps such as cleaning, cooking, or putting on make-up. She cautions that the steps will naturally cause pain, and the individual may not feel like attempting anything else for a period afterwards, but that done in small doses it does move the person forward in a positive manner.

Schiff's book ends with hope for the bereaved parent that there is a way through the sorrow. She notes that the bereaved parent no longer fears the unknown because they have faced the worst and survived. I can relate to her statement that the thought of living for any length of time after the death of my son was an awful thought. However, just like Schiff, as the years have gone my life has moved forward and I have managed to move through the seemingly unendurable pain of the beginning stages of grief to a time when there can be laughter and expectations of future events again.