Making A New Bedroom

On the weekends, I like to try and organize myself.

Sometimes I succeed in my de-clutter efforts and sometimes I don't.  During the work week, I have a very bad habit of throwing clothes and papers into piles.  By the time the weekend rolls around, I know I have to deal with the piles and hang stuff up and throw things away.

 

This past weekend marked a milestone for me because I just had my bedroom painted and most of the stuff that was under my bed,  hanging on wall and door hooks and on top of my furniture was in another room.

Just typing that sentence is a big deal.  It's my bedroom; not our bedroom.  I am taking a big leap by changing the room and making it look different than it did when my husband was alive.  Not that the room looked all that great when my husband was alive but it was ours and it was comfortable.

 

This was my opportunity to practice what I am always writing about: to embrace your life and move forward.

I was going to paint the room myself last summer but something always seemed to happen and I never got around to it.  Other rooms in the house have changed since my husband's death but this one has remained essentially the same.  I enter the room but I never really look at it or spend any time in it.  I usually go to my bedroom when it's time to sleep or change my clothes but I don't go there to hang out and say, read a book, or talk on the phone because there are too many memories there.

 

Now, nine years later, after all this time, I finally realized I had to make it a different room.  Otherwise, it would always be "our" room and that would be rather silly since my husband died.  I didn't even put any of my clothes in the drawers on the other side of the bureau because those once belonged to him.  It didn't feel right putting my things in his drawers.  But last year, I slowly started taking over all the drawers (it felt weird at first) and I must admit I am thankful for the extra space.

It was a gradual decision to change the room.  Over the past year, I found it was getting be a real downer to be in the room because here I was trying hard to rebuild my life and move forward yet when I came into my bedroom it was stuck in time.  I had flashbacks to our time together and I loved the memories, yet I knew that I would still have the memories even if I painted the room, bought a new bedspread and pillows and moved the furniture around.

Of course, this didn't come to me all at once.  It took awhile for me to push myself to do this.

Even though it was hard to do, I am now glad, and actually sort of relieved, that I am changing my bedroom because now it feels fresh and renewed.  It's okay to give yourself as much time as you need to feel comfortable with whatever changes you make in your life after you lose a loved one.  You know how it feels and you know when you are ready to think about your life in a different way.

It's not sad to change.   It just means that I am taking what has happened to me and learning how to blend it into my present life in a positive way.  I'm not leaving my husband behind because that's not possible. 

But I've come to the point where I realize it's okay to make new memories for myself.
 

The Loss of A Child

When I have been in support group sessions and listened as people have talked about losing a spouse there is usually a sense of bonding, a feeling of "having been there" in the expressed feeling or thought.  A supportive dialogue usually ensues and sometimes people even feel a sense of progress.

 

Being around other widows and widowers can be a blessing after you have lost a spouse.  I remember thinking, "Finally! Here are people who are dealing with what I am dealing with!"  Because of our shared experience, we could tell jokes or cry or get angry about the loss of our loved ones.  I think we even began to think that maybe losing a spouse is something most adults eventually have to experience.

 

 

 

 

I remember though when a woman whose husband had recently died began talking one day about how she also had lost her child.  I felt a stillness and reverence come over the room.  The death of anyone you love permanently changes your life.  A spouse, a parent, a friend.  There is always a yearning for more time and a need to connect even after they are physically gone.

But the death of a child is in a category all by itself.  Such a profound loss is unbelievably cruel and goes against the natural order of life.  

Anyone who can talk, let alone sit down and write a complete and rational thought about their deceased child is a person who is truly resilient.  Jeremy Shatan is one of those people.

 

Please read about his beloved Jacob in the following New York Times story and some of the jarring events that have marked Jeremy's journey since Jacob's death.

March 3, 2013

A High-Functioning Bereaved Parent

By JEREMY SHATAN

New York Times

 

So where am I now, 13 years after my 2½-year-old son, Jacob, died because of a brain tumor? One thing I can say is that my junk mail has no idea where I am. The other day I threw out yet another letter offering to give us advice on Jacob’s college career, as well as a solicitation to re-subscribe to Highlights magazine. Obviously, Jacob is not going to college. And my surviving children are 11 and 13, a bit out of the Highlights demographic.

 

One construct I use to help myself understand where I am now is a term my wife and I came up with: High-Functioning Bereaved Parent. As is often remarked, someone who has lost a spouse is handily defined by the word “widow” or “widower.” But there is no shorthand to describe a parent who has lost a child. Language is a reflection of culture. The great majority of people will never experience the loss of a child and would prefer not to think about it all that much. Raising children is fraught enough without having to dwell on their mortality. So for now, H.F.B.P. will have to do. I’ll certainly take it over “every parent’s worst nightmare.”

 

So how exactly does being a High-Functioning Bereaved Parent manifest itself? I get out of bed, I help raise our kids and run our household, I laugh, tell jokes, watch violent movies, listen to music and go to concerts. So it all looks pretty good from the outside, and it usually feels … not bad, which is how I prefer to answer when someone asks me how I’m doing. I have no doubt that much of this equilibrium comes from the fact that my wife and I have been together through all of this and still find a lot of joy in our marriage and our surviving children. I also have the privilege of being the executive director of Hope & Heroes Children’s Cancer Fund and working every day to improve the lives of children with cancer alongside the staff of the Herbert Irving Child & Adolescent Oncology Center. Among bereaved parents, I consider myself very lucky that I get to work for Jacob every day.

 

But I knew from the moment Jacob died that we would never get over his loss; we would only learn to live with it. At the risk of torturing grammar, perhaps I should revise that mantra to be “we would only be learning to live with it,” because it’s a process that never stops.

One way I know that is from the physically jarring sensation I feel when the huge chasm in my life abuts the solid ground I usually walk on. It could be at a high school information seminar for my daughter, for example. There’s just this moment of wrongness. Somewhere in my soul there’s a trajectory for Jacob’s life that is still going on, a part of me that wonders why we haven’t already hit these milestones with him first. The natural order of things has been disturbed, but that hasn’t entirely stopped me from attempting to hew to that order. Or it could happen with a change in the weather, which can trigger a sense memory sending me back to the time when Jacob was being treated.

 

That aspect of things is a form of post-traumatic stress disorder, I suppose, which feels like unprocessed experiences that my brain is constantly working on behind the scenes. A hint of fall in the air, and the curtain is momentarily yanked open, exposing the churning attempt at understanding what happened.

 

For reasons like those, some days are more effort than others. Also, occasionally my status as an H.F.B.P. can lead to a balancing act in relation to my work. Naturally, I can empathize with the parents I meet at the clinic — I have walked in their shoes. But since Jacob did not survive, I don’t want to shake their carefully constructed hope that their child will. One thing I always make sure to convey is that each diagnosis is unique and that treatments have continued to improve. My perspective still allows me to have hope for others, and if things do take a turn for the worse, I can offer the powerful example of my own survival after the loss of my son.

 

But it hasn’t always been that way. In the emotional chaos shortly after Jacob died, my wife and I took our infant daughter to a retreat for bereaved families provided by Chai Lifeline. We were already wrung out, but this was a new form of wringer: story after story of gut-wrenching, unimaginable loss. My wife got a migraine so intense that the rattle of a newspaper caused her pain; we considered leaving after the first night.

 

We stuck it out, and through the haze it dawned on us: you can live on after the loss of a child, it’s not impossible. After the retreat, when the sadness would threaten to become overwhelming, I would think of these other bereaved parents and take strength from their behavior. Regular conference calls with a group of dads also helped a great deal.

 

So my path has not been through completely uncharted territory. I have had mentors to follow, whether or not they would have called themselves High-Functioning Bereaved Parents. In the end, I’m not sure if being an H.F.B.P. is a choice, exactly, but I believe that putting a name to our “condition” has helped us not just survive, but to thrive and engage with life more fully.

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Jeremy Shatan lives in Inwood, Manhattan, with his wife and two surviving children, is proud to serve as Executive Director of Hope & Heroes Children’s Cancer Fund, and writes about music at LINK 3 AnEarful and @AnEarful.