Unwrapping grief

In 2017, Professor of Moral and Historical Theology Rick Steele lost his daughter Sarah to complications from fibrodysplasia ossificans progressiva. For 32 years, Sarah Steele ’07 struggled with the rare genetic muscular-skeletal disease before she passed away just before Thanksgiving and her birthday on Dec. 23.

Rick spoke to Response about holiday traditions, grief, and thoughts about how friends can help someone who has suffered a loss.

Abstract art of wrapping paperHow does your family celebrate the holidays, while at the same time honoring Sarah’s memory?

We reminisce a lot while opening presents around the Christmas tree. This always brings tears and laughter, in about equal measure. Both responses are part of the ongoing, never-ending healing process. During Christmas dinner, we toast Sarah with a
tall glass of chocolate milk. Sarah loved chocolate milk. It was, in fact, the last thing that passed her lips before her death.

Are there other traditions you do throughout the year to remember her?

We make an annual contribution in Sarah’s memory to the International FOP Association. Participating in the IFOPA has been a major part of our family’s life since we learned about the organization when Sarah was 6 years old.

You’ve spoken about the difficult balance between cherishing a loved one’s memory versus fetishizing. Can you say more about that?

That’s one of the most emotionally delicate and spiritually difficult challenges that grief presents. To me, cherishing someone’s memory entails the stark recognition of death’s finality and the imperative of allowing the treasured past to be the past, while also recognizing the power of memory to shape the identity and life of the survivors. In contrast, fetishizing the memory of the dead involves a kind of elaborate self-deception, whereby the past is somehow desperately projected into the present and futilely clutched at, as if the family clock had stopped. Cherishing is the kind of letting go that allows the survivors both to hold on and yet also to move on. Fetishizing is refusing to let go, and thus holding on prevents moving on.

How can concerned friends and family help someone who is grieving?

Remember that each person grieves in their own way and at their own pace. Avoid giving them advice on how to “get over it,” and set aside all expectations about when they will “get over it.”

Pray for the bereaved. If it seems appropriate, inform the person you are praying for them. If it doesn’t seem appropriate to tell them, pray for them anyway. Intercessory prayer is first and foremost an objectively powerful, if profoundly subtle and
mysterious, act in and of the Spirit. Its efficacy is not that of a psychic tonic for the person being prayed for, although people of faith may indeed experience emotional relief from knowing they are being held in the divine Presence.

Share with the bereaved a favorite story about how the deceased touched your own life. Keep the story short, and don’t worry about making it moving or edifying. The most comforting thing is the reminder that the deceased lived a genuinely human life, and that the filaments of that life extended in all directions, many of which may be unknown to the bereaved. One of the most moving sympathy emails we got after Sarah’s death was from a family in India, whom we had never met. They had read the booklet that Sarah and her mother, Marilyn, had written for children with FOP and their families. This family told us that booklet enabled them to explain their own son’s condition to relatives and neighbors in plain words and had demystified their son’s condition and helped people interact with him more naturally.

Do something practical. Take over a casserole or cake or flowers. It’s fine to do this shortly after the death, but it’s even better, I think, to do it a month or two later. The bereaved often feel overwhelmed with attention the first two weeks after a death but might feel forgotten or abandoned thereafter.

Donate to the family’s church or favorite charity in memory of the deceased. You needn’t tell them that you have done so. If the church or charity is well-administered, it will inform the family.

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