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Not Another Memorial

Robin Lang, Regional Coordinator, HomePN Consumer

After 20 years in the “lifeline boat,” I’ve made many friends. These friends are life preservers providing support, information and love.

We know change is constant and inevitable. One change that’s hard for me to accept is the loss of a fellow HPN consumer. Accepting loss and change comes with time. We move through time while simultaneously moving through stages until we accept the loss or change.

Initially, I feel guilty when someone passes away because I survived and they didn’t. My guilt gives way to sorrow. The bond between HPN consumers is, in some ways, stronger than bonds we have in other relationships. And one loss can remind us of others we’ve experienced.

Have you ever grieved the loss of your guts or good health? I do. I ask, “Why me?” or “What if?” These are normal, appropriate reactions. Our natural defense mechanisms ‘kick in’ to spare us pain; we want to find blame. Fixing blame to something or someone helps us cope with events that are out of our control. Sometimes, I become very angry after a loss or change. Anger is not a ‘bad’ emotion, as long as the action behind it is a positive one. Anger is a natural emotion in the evolution of accepting loss/change. Positive things that I find helpful in the grieving process are praying, exercising, talking with other consumers, talking with a therapist, and journal/diary writing.

When my anger ebbs, I feel limp, vulnerable and afraid. “Can this happen to me? How will I die? Will my next infection or complication kill me?” I know these questions are typical; I try not to dwell on them.

One thing I keep in mind is that WE’RE ALL DIFFERENT. People with the same therapy, the same diagnosis, rarely have identical outcomes. I also arm myself with as much information about my health as I can. I don’t know what the future holds. I find that fact more exciting than frightening though, because I love mysteries.

HPEN is a challenge but with the support of friends and the hope of new friendships to come, we’ll find the strength to meet the future head on with the same courage our predecessors possessed. We honor them and ourselves by keeping a positive attitude. Science has proven survivors are positive thinkers.

Our tribute to those that have blazed the trail and gone before us is to forge ahead, not only for ourselves, but also for those who will follow us. When I read another memorial in the LLL, I will give thanks to those friends for all they’ve given the world while they were here.

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5/6/2017
Oley Regional Conference

This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.

 

Updated in 2015 with a generous grant from Shire, Inc. 

 

This website was updated in 2015 with a generous grant from Shire, Inc. This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.
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