A six-year battle with ALS

Amyotrophic Lateral Sclerosis (ALS), often called Lou Gehrig's disease, is a progressive neurodegenerative disease that affects motor neurons – the nerve cells that control voluntary muscle movement. It leads to muscle weakness, muscle atrophy, and eventually, paralysis.

This definition hardly begins to capture the reality that families face. You watch your loved one grow steadily weaker until they're unable to do what they once could. My wife, a violist, played in community orchestras wherever we lived for over 50 years. One day, her muscles could no longer hold up the instrument. She gave it to a local high school orchestra director so that its music could continue. We had three years without a diagnosis, followed by one that said her life expectancy would be two years, although she lived longer.

We grieved together for over six years until her body finally gave out. Our grieving didn't go through the normal steps of grieving that Elizabeth Kubler-Ross describes in her book on Death and Dying (Denial, Anger, Bargaining, Depression, and Acceptance). Grieving for us was being together mindfully and discussing the end and why it was not frightening because of our Christian foundations.

Quakers, or the Religious Society of Friends, do not have a single, unified doctrine about life after death. Instead, their views are marked by significant diversity, both historically and today:

• Some Quakers believe in a spiritual afterlife, such as entering a realm of pure love or being in the presence of Jesus for eternity.
• Many Quakers, especially in liberal branches, focus less on the afterlife and more on living ethically and faithfully in the present. They see speculation about what happens after death as less important than how one lives now.
• Traditionalist or Christ-centered Quakers may hold more conventional Christian beliefs about eternal life, but even among them, belief in the afterlife is not considered essential to faith.
• Quakers generally reject traditional notions of heaven and hell as rewards or punishments for earthly behavior. Instead, they emphasize that love has a timeless quality and that the experience of God’s love is central, whether in this life or beyond.
• The Quaker approach to death is practical and accepting, viewing it as a natural, sacred part of life. Their funeral and memorial practices reflect simplicity and a focus on celebrating the life lived, rather than on doctrines about the afterlife.

The non-creedal nature of Quakerism means that individual Friends are free to hold their own beliefs about what comes after death. The community supports a wide range of perspectives, united by a shared emphasis on the sacredness of daily life and the importance of ethical living.

In summary, Quaker views on life after death range from belief in a spiritual continuation to seeing death as the end. There is a consensus that living well in the present is more important than speculating about what comes next.

As Christian Quakers with a belief in the afterlife, we accepted that ALS would ultimately kill her and that she would then be reunited with her mother and brother. This view was comforting to us. As a Quaker, she remains part of our community and is connected to us. Her spirit continues to influence and is woven into the fabric of the meeting and the wider world.

As a Quaker and Christian, I remain connected to her and am sure I will see her again. But for now, we have a separation. She has moved on to a better place where ALS is no longer a problem for her. The separation I experience daily is physical. I can't hold her or be held by her. No hugs or kisses. She is not by my side for me to ask for her opinions; she taught me to have some. I don't get to hear her break into song each time we crossed the border into New Mexico. Most of all, she was the historian for the family—so I have also lost most of that.

But our connections remain. We had three lovely children who care about me as I do them. I came to Quakerism through her and will always be grateful for that gift. I see her in the things she has left behind, pictures, furniture, organized boxes of photographs we have taken throughout our lives.

Bob Barnard (he/him) is a member of Las Cruces Monthly Meeting in New Mexico. He is a blogger, a freelance writer, and keeps himself in service to Intermountain Yearly Meeting. He has lived in many parts of the country and witnessed firsthand the integration of Little Rock High School. He is a father, grandfather, and great grandfather.