We Know Healing Takes Time

We Know Healing Takes Time

A look into the donor family and recipient perspectives on connecting

One question many of our donor families ask is: “Can I talk with or meet my loved one’s recipient?” As donation has two sides, recipients also often ask SightLife if they can thank the family of their cornea donor for providing them such a transformative, second chance at sight. 

The answer to these often-asked questions is: maybe. The desire of a donor family to connect to the individual(s) served by their loved one’s gift can be understandably strong. The same holds for recipients. And while SightLife does have a letter writing program, it follows communication guidelines set by the National Donor Family Council. As a rule, a letter written does not guarantee a letter, email, or phone call in response from either the donor family or recipient. In addition, letter writing between two parties does not always result in a face-to-face meeting.

Yet we still encourage our community members to explore the opportunity with hope. Setting realistic expectations is important, but so is the comfort that can come from taking the first step – to say thank you or share how your loved one brought meaning to your life.

Here are a few considerations to keep in mind as you contemplate if our letter writing program is the right fit for you. Overall, the journey to emotional and physical healing takes time – and the timeline varies for every individual.

A recipient’s journey

Like the journey of healing after a loved one passes, the journey of a corneal transplant recipient can take twists and turns. Some days are good, some are bad.

While a simple “thank you” is enough for some donor families, it is common for recipients to not only want to express their gratitude but also describe all they can now do and experience because of their transplant. Some recipients choose to wait to contact the donor family until the full effects of their transplant are realized, which in some cases can take up to a year or more.

Other recipients may need additional time to ready their heart enough to compose a letter. This is because feelings of gratitude, euphoria, and sadness can sometimes co-exist. The term “survivor’s guilt” is something we often hear about from recipients. On What’s Your Grief?, an online grief resource, Litsa Williams defines the term as a sense of deep guilt that comes when one survives something. Most recipients of donated tissue are keenly aware that their transplant, and the life-changing impact it brings, is only possible through loss – which can make connecting with a donor family very difficult.

The recipient isn’t ungrateful. They are just not in the emotional space or place to connect.

A donor family’s journey

Rebuilding after the loss of a loved one can be challenging. Grief can bring an ebb and flow of emotions that understandably impact a donor family’s decision to connect with the recipient of their loved one’s tissue. Some days are better than others, some are worse. This differing space of emotions can impact a donor family’s desire to engage. For some donor families, reaching out to their loved one’s cornea recipient is something they choose to do right away. For others, they may wait a couple of years – or prefer not to connect.

The power of letter writing

In SightLife’s “Story of Giving” booklet, grief expert Donna Oiland describes the healing power of storytelling. When you write a letter, you tell a person’s story. Whether the story describes your loved one’s big heart and the unique life they led or paints a picture of the opportunities you can pursue with renewed vision, the act of writing the story helps open a door to healing. That’s why, regardless of the donation outcomes, SightLife encourages donor families to share their loved one’s story.

The resource Capturing your Loved One’s Story offers ideas to make the storytelling experience your own. Perhaps you want to involve your whole family, or a group of friends. Perhaps you want to include photographs. There are many ways to tell the story of the person you love. Writing the story may also take time.

SightLife strives to respect timelines. No matter when a donor family or recipient chooses to write it, we make every effort to help get the letter to where it needs to go.  We also do our best to manage expectations because it can be emotional to hear from the either side.

Connect with the donation community

While we can’t guarantee that you will hear from your loved one’s recipient(s) or your donor’s family, SightLife can connect you with others in the donation community through our many curated events and convenings, many of which now take place online.

Ten years ago, two mothers met at a Donation Celebration organized by SightLife: Jeanne, whose daughter, Sarah, was a cornea donor, and Wendy, whose son, Scott, received two corneas. While Sarah was not Scott’s donor, the two women found the encounter helpful to their healing journeys and remain connected to this day. Both women shared their experience:

 “Talking with Scott and his family was very instrumental in my grief journey.   It brought me joy to know that he can now see clearly -and could see the sparkle in his eyes.  I had not considered how the family is also greatly affected.  Scott and his family’s appreciation, joy and sincere gratitude to the donor and family is very touching.  We are Facebook friends and I love seeing Scott’s life take off.”

 -Jeanne

Even though we had never met, Jeanne and I seemed to have a special connection and understanding of each other’s personal journeys. We not only met a donor family, but we had made a lifetime friend and consider Jeanne and her daughter, Elisha extended family.

– Wendy

Please contact SightLife Family Services and Community Resources to learn more about our Letter Writing Program or the other connection opportunities we offer, from Crafts Night to webinars featuring experts on a range of topics.

Editor’s Note: Three SightLife cornea recipients shared their stories of sight restoration during the Family Services webinar, Stories of Transformation, on April 20, 2021. To hear about the impact that cornea donation had on their lives, and the gratitude they feel toward their donor families, view the recording here.