I Learned the True Value of Friendship Amid Difficult Times
“Lots of people want to ride with you in the limo, but what you want is someone who will take the bus with you when the limo breaks down.” — Oprah Winfrey
On May 22, I lost my husband, Aubrey, to hereditary ATTR amyloidosis. He was my best friend and father to our four children. This loss reverberates deep within my soul; it feels like there’s a vacuum in my chest. I’m not broken down, as Winfrey said, but some days, I’m running on empty and feel on the verge of breaking down. As my engine starts to stutter, I reach out to people around me whom I know and trust.
After nine years of being a caregiver to a loved one with a terminal condition, I know it can be easy to lose sight of your own needs. It wasn’t until the last few years before Aubrey passed that I recognized the importance of focusing on myself. I began to reconnect with people I’d overlooked during the years when caring for an ailing spouse 24/7 gave me tunnel vision.
The beauty of true friendship is that even though I carried guilt for neglecting some close relationships, none of the people who mattered felt the same way. No one blamed me for not staying in touch. When we reconnected, it was like I had never left. I believe this is true friendship’s essence and signifies a bond that will last no matter what.
Since Aubrey passed, two sets of friends have made the effort to spend quality time with me. Out of concern for my well-being, these wonderful girls left their families on separate weekends to shower me with encouragement. They have sown love into my soul, and I feel empowered by the knowledge that they have my back, even when life gets tough.
However, some friendships are more challenging to reignite, only because both our circumstances have shifted so much that we no longer hold common space.
A terminal illness can greatly affect the rapport people share. In my experience, most people don’t know what to say or do when they learn about the burdens of the condition. Rather than walk calmly beside you, they may be bursting to help. Eventually they realize there’s nothing they can do, so it’s often easier for them to disconnect and disengage. This is totally fine; I hold no malice toward these people. Being a close friend to an ill person or their caregiver requires someone to be steadfast and accept that sometimes doing less counts for more.
Aubrey and I lost touch with many people throughout his illness, and that’s OK. I’ve met new, amazing people, and my friendships with those who stuck with me have grown far richer. Now that he is no longer here and I am grieving, I find myself surrounded with the love and care of people I truly trust.
With Aubrey gone, I’ve lost my limo and am riding on a bus. But the bus is full of friends I’d journey with to the end of the world.
Note: FAP News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of FAP News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to familial amyloid polyneuropathy.
Harry van kleef
We only came aware of Aubery's passing in the July FAP news letter.
We are so sorry read about your loss.
My wife Joyce only recently came in contact with Aubery and youself. This was not long after she was finally diagnosed with this terrible desease.
You both were a great help to us in learning how to deal with this terrible heridtary desease.
Please accept our condolences, our thouhts are with you.