When You’re an Expert…

I have a dear friend who has lived with a pretty dire medical prognosis for over a year, and in spite of moments of sadness and depression, she seems to carry on her life with remarkable energy, savoring everything worth savoring. She is a writer and enjoys organizing her time, prioritizing projects, and having a plan for the future, however short or long it may be. She divides the time ahead into three-month chunks, with a “theme” for each chunk, taking great satisfaction in finishing a 90-day period, and diving into a new one with a new theme and matching projects.

Although not a social media follower, she recently joined a chat room related to her diagnosis on the Mayo Clinic website. She kept quiet for a while, reading posts from others in her situation, careful not to jump into the sometimes highly emotional, sometimes confrontational fray. Eventually she realized that these were her people, that she did indeed belong in this chat room, much as she, and all the others, wished they didn’t. Because she is a creative, generous, engaging force, she has now graduated from participant to “volunteer mentor” and is spending many hours a week coaching and supporting others facing challenges like hers. Maybe they have just received a diagnosis and are in shock and despair, as she was a year ago. She knows what that is like and is the best possible companion in that moment. Maybe they are struggling with impossible decisions about which treatment, when and where, or decisions about whether to treat at all. She has been there, too, and although she would never make the decision for them, she can ask questions, listen, sympathize, and support. She knows what it is like to be living with a challenging, uncertain life. She is an expert, just as much so as the doctors and technicians.

Of course, this is a wonderful thing to be doing, a noble theme for this three-month stretch of her life. But something else is going on, something I recognize. She loves this work, and she needs to be doing it. She lights up, is animated and full of excitement when she talks about the people she is helping. I am sure no trip to Hawaii, no visit from the Dali Lama, no giant serving of tiramasu could produce that level of energy and enthusiasm in her.

I remember that same drive — almost an obsession — to connect with those suffering what I had just gone through. My three-year-old son had very complex surgery to remove a brain tumor. There was follow-up treatment, medication, appointments. This was many years ago, and I’m happy to report that he is an attorney with the federal government, living abroad with family and doing great. But back then, I was filled with anxiety about a very uncertain future; I measured my life and his in school-year blocks. And yet, like my friend, through the depression and anxiety there was a passion to reach out to those in a similar situation. They needed me, someone who really understood, and I needed them. It’s as if I had joined a club without intending to. The Association of Mothers with Children with Brain Tumors. Who would sign up for that group?! But we don’t always get to choose the clubs we are in, and, finding myself in this one, I wanted to volunteer and share my expertise!

There was no internet, no social media, so I contacted pediatricians in the area and asked if they would give my contact information to any parents in a similar situation. I would love to support them, I said, through the journey, comfort and encourage them. Maybe due to privacy laws and other bureaucratic hurdles, I heard from very few, but the passion and the energy were there.

I feel a deep bond with my friend, who in the midst of crisis herself, is very much alive and full of vitality as she guides her fellow patients through tough times. We all have life experiences, many painful, some we thought we might not survive, that have made us into experts. We never asked for that expertise, and would happily trade it in for a degree in welding or culinary arts. But it’s what we’ve got and we are driven to put it to use, to comfort, encourage, empathize with our new club members.  

10 thoughts on “When You’re an Expert…”

  1. Lucy, I remember well that scary, fraught time. That he has flourished so amazingly is truly a miracle!

  2. Oh Lucy…my heart breaks for your friend, but swells in admiration on how she is facing her challenge and reaching out to others. Such a role model~~ I hope I could be half as courageous in her situation.

  3. Lucy,
    I recall working on contentious projects where we were blessed with your expertise–how much relief and energy I would feel when I stopped to see who needed uplifting and reached out to help them, instead of feeling badly about how the impasse was affecting me.
    I believe this superpower propels us through life for all sizes of challenges. And so grateful you had the strength to harness it for your son, and today call out our responsibility to recognize and help others when these challenges are hardest.
    Be well,

    1. Rhea, this is beautiful. I thank you so much, and I am grateful to have had you as a participant. You always brought calm and reason. I felt you were my secret assistant!

  4. Ah, those clubs you join against your will. I’ve thought of that, too, joining scoliosis support groups just to show them the other side. A loose friend of mine had her niece about to go through surgery, and she linked me up with the mom. I gave the mom a bit of a run-down, even if many things had changed in 30 years. It gave me a boost to be the one who “got it” in a way that others didn’t.

    That said, I didn’t tell her about the color drained from my parents’ faces when they had to sign the paperwork to know what could go wrong in surgery. Some things…are better left unsaid.

    1. Thanks, Cassie. Glad that you could connect with the mom and give her support. We don’t ask to be members of these clubs, and would probably prefer to walk past that clubhouse. Good for you.

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