The Power of Advocating and Participating in Events Like PAME

Families at the 2106 PAME Conference Advocacy Day

Families at the 2016 Partners Against Mortality in Epilepsy (PAME) Conference Advocacy Day

Wednesday, August 24, 2016

The Partners Against Mortality in Epilepsy (PAME) 2016 Conference in Washington, D.C., offered a special opportunity for families and medical professionals to participate in an Advocacy Day on Capitol Hill. Family members visited their Senators and Representatives to advocate in support of funding for research, programs, and data collection important to families living with epilepsy and those who have lost someone to epilepsy.

It was a wonderful opportunity for families to share their story and raise awareness about the risks associated with epilepsy, which include death, and the need for policies that further research, data collection, education, and support around sudden unexpected death in epilepsy (SUDEP) and mortality in epilepsy. Many families shared how they relished the opportunity to have something “concrete” to do to help “fight the fight.”

As Cyndi Wright, then director of the SUDEP Institute stated, “This extraordinary convergence of commitment, energy, knowledge, and action is what makes PAME such a special experience.”

Before attending PAME, many families did not recognize the power of sharing their story. In this article I want to motivate and encourage all bereaved families to consider attending future PAME conferences and participating in advocacy opportunities. I want to explain why you, a bereaved family member, are such an integral part of raising awareness about mortality in epilepsy to drive policy changes in support of greater risk disclosure, research, data collection, education, and support. I also want to help you understand how advocating and sharing your story can help your grief.

How can attending events like PAME help my grief?

Often, life after loss catapults us into the process of living with no time to grieve. We are busy going to work, taking care of family, and managing other life responsibilities. This “busy” lifestyle can overshadow grief that then unexpectedly emerges and surprises us.

We live in a death and grief avoidant society, so many of us have not yet developed tools to cope and adapt to loss. As a result, we may try to avoid events that may trigger our grief. Some of us may fear attending a conference like PAME or engaging in advocacy work will be too intense and emotionally difficult.

A description of the dual process model of grief may help offer clarity on why we might make a conscious decision to attend a conference like PAME; taking time out of our busy life to spend a few days dedicated to learning about our loss. The hypothesis of the dual process model is based on the idea that many people undergo periods of alternately experiencing the suffering of loss and avoiding it. Other models suggest that the grief process is linear, but the dual process model proposes that grief can oscillate between experience and avoidance.

This is a coping mechanism to prevent the bereaved from becoming overwhelmed by a loss, and it is a perfectly normal way for someone to deal with loss. No one wants to be in grief all the time, but grief work is not without pain. Allowing our self the space to address our grief, almost always, leads to acquiring knowledge and understanding, which propels us forward in living and loving more fully.

The PAME experience provides a very special focused place to do “grief work” in an exceptionally safe environment with a group of people who share our experience, understand our loss, want to hear our stories, and are eager to work together to drive change.

How can I become an advocate?

Attending an event like PAME can be a difficult step in the grief process. It stirs sleeping emotions and taps into acquired empathy and compassion by sharing the pain of loss with others who understand. One mother said, “I feel like I have a new family.” Another said, “It has awakened a passion inside me to go forward for my son, so his death will not be in vain.”

See "Quotes from PAME Participants" to find additional feedback from bereaved families who attended PAME. They share how they benefitted from the meeting and explain how they gained skills, experience, motivation, and direction. We hope their comments will inspire you to share your story, attend conferences like PAME, and participate in advocacy opportunities.

While PAME only occurs every few years, the SUDEP Institute and other PAME partners are building a network to provide you the tools and support to become an advocate when you are ready. From sharing research and information with your local medical providers and death investigators, to advocating for policies that improve research, data collection, and education on mortality in epilepsy, your story can drive positive change.

See You at the Next PAME Conference

PAME is a motivator for change, and, for many attendees, it has given new hope, passion to participate in a cause, and a sense of purpose in their lives. Families are very important partners against mortality in epilepsy, so I look forward to hearing your stories, receiving updates on your advocacy efforts, and seeing you at the next PAME conference.

Linda Coughlin Brooks is the SUDEP Institute Bereavement Support Facilitator; she contributes regular articles as part of our bereavement support services. You can contact Linda at sudep@efa.org. Watch for future articles and learn more about our support for bereaved.

Authored by: Linda Coughlin Brooks RN | BSN | CT on 8/2016
Quotes from PAME Participants
  • “I was motivated to attend PAME so I could understand SUDEP better; learn from professionals and researchers, and to gain hope of a promising future.”
  • “It was hard but so helpful.”
  • “Exciting to see everyone united for a great cause.”
  • “Meeting compassionate caring physicians who cared about my loss touched my heart.”
  • “This is a rare opportunity to have the multitude of questions, unique to epilepsy deaths and living with epilepsy, willingly answered by knowledgeable, kind, caring, and compassionate professionals.”
  • “It is a great place for men to go process their grief, which I think is more difficult for men to find.”
  • “Cost was financially and emotionally is challenging, but worth it.”

The most helpful part of the meeting for my grief was:

  • “sharing stories”
  • “not feeling isolated or alone”
  • “understanding that guilt and regret is common in SUDEP and epilepsy deaths”
  • “seeing the passion and dedication of the researchers and knowing that they are motivated and driven by our grief”
  • “learning about the advocacy for change by so many groups represented there, and that families are a very important part of the movement”

Before attending PAME, people should “know some difficult emotions will be stirred, but connecting, getting informed, and being empowered to make change for your loved one is worth it.”

The worst part of the meeting was:

  • “hearing that many doctors still don’t tell families about the possibility of death”
  • “feeling regret that I had allowed too much independence that may have contributed to death; learning that greater vigilance may have saved [my loved one]”
  • “hearing that no seizures is seizure control; we thought a few was safe”

Our Mission

The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

 
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