“Grief: The pain now is part of the happiness then. That’s the deal.” C.S. Lewis
If you have found yourself here, likely you or a loved one is struggling with the loss of someone who had epilepsy. Grief is a form of love. It’s a unique and deeply personal experience with no defined timeline. In a recent PAME webinar, Dr. Friebert, a pediatric palliative care expert, shared that grieving “doesn’t mean letting go of the person we love, we never fully detach from those we love, but what happens is that we learn to live with the loss and integrate it”. Dr. Friebert talks about leaning into grief work and how this work allows us to learn to live with loss. She references William Worden’s Four Tasks of Mourning:
- To accept the reality of the loss
- To process the pain of grief
- To adjust to a world without the deceased
- To find an enduring connection to the deceased in the midst of embarking on a new life
If you are reading this, know you are not alone. There are many resources and people that can help as you move through your grief work.
Some key resources include:
- The Epilepsy Foundation offers a range of support services to help people bereaved by epilepsy, including in-person and virtual support groups and a 24/7 helpline (1-800-332-1000 and
en Español 1-866-748-8008). They also offer an online bereavement support group on the discord platform.
- Dr. Friebert’s PAME presentation.
- The North American SUDEP Registry collects information about people with epilepsy who have died unexpectedly to determine if they died from SUDEP or other causes. They collect DNA, brain, and other tissues for scientific studies about the causes of SUDEP. If you are interested in learning more or participating in this registry, please contact them at 855-432-8555.