Family, Living with MS, Other Media

Seeing Death Clearly Podcast

Last week, I was a guest on Jill McLennen’s podcast Seeing Death Clearly. Jill recently changed careers and now serves as a Death Duala. Death is one of the few experiences that all humans will have, yet there are so many cultural barriers to planning for the inevitable. So, like having an advocate through pregnancy and delivery, Jill helps those facing death, whether theirs or a loved one’s, prepare.

Preparation looks like different things to different people. Paperwork. Wills. Funeral arrangements. Understanding grief.

My family was lucky in a lot of ways. My sister had cystic fibrosis, a genetic disease that affects the lungs and pancreas. Lungs fill up with mucus. Digestive enzymes are not produced. Some CFers develop diabetes. Some need lung transplants. Some will never be able to have children.

Some die before adulthood starts.

My sister was 25 when she died. It was 2009, both the worst and best year of my life (sister died in February; I met my husband in September. Listen to the podcast for the rest of the details).

My sister never met my husband. That still angers me even now. The trick, I think, is being okay with being angry about it every once in a while. See, the funny thing about loss is, while things get better, life is never the same. The trick is accepting the new normal: A life without your sister.

I was barely an adult myself. I had just had my 27th birthday in December of 2008. (My grandmother died in March of 2008. My mom had a really rough year.) I was in a job I hated, waist deep in a controlling relationship, and still processing my 2007 multiple sclerosis diagnosis. (I guess my mom and I had a rough few years.)

What was beautiful about my sister’s death was her ability to prepare all of us for the inevitable. She was tired. Her quality of life was poor. She was ready to move on to the next existence. My parents’ house was full of people my sister wanted to see. She allowed all of us to have some sense of closure. She told us what she knew we needed to hear from her.

She also demanded I sing at her funeral mass. She wanted hymns in major keys: “Fly Like a Bird,” “Be not Afraid,” “On Eagle’s Wings.” She wanted as many people to eulogize her as possible. Attendees wore pink (her favorite color). The luncheon was full of laughter.

I’m getting teared up just writing this.

I was so very grateful for the opportunity to share my sister’s story with whomever needed it. I hope you will give it a listen if you haven’t already. And subscribe to “Seeing Death Clearly:” I know Jill will share even more stories to help all of us prepare for the very human experience of death.

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