The Spectrum of Grief in Duchenne

Thank you to Heather Benbrook, the co-author of this web page. Heather is a school counselor and also an LPC-Associate completing her supervision hours under the supervision of Bonnie Mondragon, MS, LPC-S, RPTS.

What is Grief?

Grief…a simple yet complex little 5 letter word.

We all have experience with change, loss and grief, even our kids. Grief and loss are words that incite confusion, pain, fear, memories and maybe even a grimace at the thought of it. Despite common belief, however, grief is not just about death and loss.

Grief is so much more than that.

John W. James and Russell Friedman are the founders of The Grief Recovery Institute. They have defined grief as “the conflicting feelings caused by the end of – or change in – a familiar pattern of behaviors.”

In their most fundamental forms, grief and loss are all about the emotional response we have to change.

Let that just sit there for a minute.

The Spectrum of Grief in Duchenne

Since grief is all about the response to and the perception of a change, loss and grief are highly individualized experiences for people.

Take, for example, when a child with Duchenne receives his or her first powerchair.

Parents often endure intense loss, grief and mourning because their child can no longer walk on his or her own.

The child, on the other hand, usually experiences great relief, freedom and joy from the powerchair. No longer does he or she have to endure unpredictable legs and painful falls. No longer does he or she have to lag behind peers, excluded.

As seen above, even with the exact same change, grief can be present for one person and not for another. If grief is present, it can be experienced on a spectrum from something minor to one of the most devastating losses that you can imagine. It can be experienced like a light shower on a summer afternoon or like a tornado or hurricane where you feel like there is nowhere to go to escape it.

So many things change and they change so often with Duchenne Muscular Dystrophy. Before one can even find equilibrium, another change often knocks him or her over.

Duchenne grief isn’t only anticipatory grief for a loved one. Duchenne grief is grieving over every single physical decline, every single relationship lost, every financial and professional change. It’s grieving conventional changes that never materialize. It’s being reminded of your own grief as others’ lives continue on without Duchenne change.

Duchenne grief is also grieving the things you want to happen. Being accepted into a clinical trial can ignite grief. Finally making the home accessible can ignite grief. Receiving financial assistance can ignite grief, too.

Duchenne grief is incredibly complicated and originates in the unrelenting and unpredictable change in our lives. It originates in the chaos swirling from every direction.

To complicate matters even further, every member of the Duchenne family experiences grief at varying depth and varying times. Family dynamics are constantly influenced by individuals’ underlying response to change.

The parents’ grief can affect their emotional and physical availability for their children and their spouse. Siblings’ grief affects interactions and heightens emotions and responses in the household. The grief of the individual with Duchenne him or herself encompasses all of the above, particularly as function is lost and understanding of the disease deepens.

Brene Brown discusses grief in her book Rising Strong. She says, “grief seems to create losses within us that reach beyond our awareness…we feel as if we’re missing something that was invisible and unknown to us while we had it but now is painfully gone.”

As much havoc as this Duchenne grief wrecks during our loved one’s lifetime, oddly enough, it becomes familiar company. Once the family reaches the ultimate change of Duchenne, the overwhelming grief that settles in isn’t only about the loss of a loved one with Duchenne.

It’s also about the loss of the predictable swirl of chaos. It’s about all the relationship changes with others, even within the Duchenne community. It’s about identifying the “invisible and unknown” that kept us company for so long and learning a new path forward without them.

Coping & Compassion

Grief is definitely not just about death and loss. It’s about so much more than that.

For the Duchenne family, change and grief become constant companions from diagnosis day, sometimes even before. For the Duchenne family, change and grief intensify as time speeds by.

There are multiple strategies to manage the inevitable grief in our Duchenne community. The best place to start is by simply identifying the changes in your life and how you feel about them.

For extended family and friends, please validate the struggles your loved ones are facing every day. There are many bumps, blockades and debris that they have to deal with on the journey.

They need you.

They need you to be the constant in the ever changing storm.

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