Navigating unknown territory with others: Meet @irene5

Member Spotlights feature interviews with fellow Connect members. Learn more about members you’ve connected with and some you haven’t met yet. Nominate a member you think should share the spotlight.

ROSEMARY: What brought you to Mayo Clinic Connect? What motivates you to take part in the community?

@irene5: When I was first diagnosed with mycobacterium avium complex (MAC) and mycobacterium avium-intracellulare infection (MAI), I had truly never heard of it. So, I read everything I could find to learn more. One of the things I read suggested joining a support group to help deal with the emotionality and physical effects of a rare disease that could potentially impact life the way I knew it and also the lives of my family members who depended heavily on me. I had checked to see if there were any local groups in my home state of Connecticut but was unsuccessful. Somehow and quite by accident I stumbled onto Mayo Clinic Connect and read and reread many entries.

I was particularly interested in the posts by former mentor, Katherine (@Katemn) who, like myself, had been afraid to start treatment. Everything was unfamiliar to me. I was in foreign territory. The questions of who, what, where, when, and why of MAC eluded me. She provided the guidance, support, and encouragement I needed to navigate through uncharted waters. I think because of the help I have received from members on Mayo Connect over the past four years, I began to feel obliged to help new members who were struggling with many of the same fears, frustrations, and questions that I had previously dealt with when I was first diagnosed and for many months thereafter.

ROSEMARY: What about Connect makes you feel comfortable to share and to be open with the community?

@irene5: Connect makes me feel comfortable sharing with other community members because everyone is on a similar journey.  Whatever disease or disorder they may have been diagnosed with, they can, hopefully, validate or provide help to another member with just about any issue or fear that arises on that member’s journey.

There is a wealth of knowledge and information in the form of videos coming from the doctors at Mayo Clinic and National Jewish Hospital that has been shared freely and frequently on Connect in the MAC & Bronchiectasis group. The sharing of reputable information has no doubt, provided invaluable assistance to so many.

ROSEMARY: What groups do you participate in?

@irene5: I participate in several groups, namely:

• MAC & Bronchiectasis
• Lung Health
• Infectious Diseases
• Spine Health
• Chronic Pain
• COVID-19
• Ear, Nose & Throat (ENT)
• Hearing Loss

ROSEMARY: Tell us about a meaningful moment on Connect.

@irene5: There have been many meaningful moments for me on Connect. I do not like to be in the spotlight and am reluctant to accept praise for anything. I prefer to be the quiet helper and facilitator who empowers people, which is why I was somewhat uncomfortable with being asked to do this interview. There have been so many meaningful and a-ha moments for me on Connect, whether it be from the consistent and continued support from mentors Terri (@windwalker) and Sue (@sueinmn) or friendships formed with members @yaggi01 and @alleycatkate. The primary thing about meaningful moments is that, whether helping a fellow member or feeling good about participating, I have found that Connect is a community of people working together to help and be helped by others from all walks of life.

ROSEMARY: What surprised you the most about Connect?

@irene5: What surprised me most about Connect was the impact of a member’s passing not just on me, but by anyone who had come to depend on Katherine’s “Can Do” and gutsy attitude in battling this disease in addition to dealing with an unwell spouse. I did not anticipate being quite so devastated when Katherine (someone I had never met and didn’t even know her last name) died. In her candid yet kind way she had provided so much information and support to so many members.

I am also happily surprised by the friendships that are formed with people we do not know but have come to trust and to care about. It is rare that a community offers so much to so many. For that reason, I am vigilant concerning the rare cases of misguided people who might not have good intentions on the site.

ROSEMARY: What energizes you, or how do you find balance in your life?

@irene5: Balance is found in my life through prayer, mindfulness, meditation, and reading (especially the daily meditations of Richard Rohr, which a dear friend sends to me). I find balance by looking at sunrises and sunsets on Hampton Beach and the incredible cairns that an anonymous beachgoer creates.

I try to make time for the things that matter. So many people feel that how much they accomplish on any given day is indicative of self-worth and balance. I try to remind myself of the bigger picture and realize that being kind to oneself leads to balance. I think having MAC has, in some ways, been a blessing, in that I have had to make peace with my limitations. I can no longer do the things that my type A personality did for so many years. My life became more balanced when I gave myself permission to let that go. Learning to tune out the noise of what I thought mattered has aided in my finding balance. We can all pretty much do anything, not just everything.

ROSEMARY: Tell us about your favorite pastime or activity.

@irene5: My favorite pastime is reading. As a retired K/1 teacher of 43 years, I have always loved and cherished children’s books and teaching children how to read. Since being diagnosed with MAC and not having the energy or ability to do much, I have become an avid reader of books on the New York Times best seller list and books that are current for these times in our nation’s history.

ROSEMARY: Do you have a favorite quote, life motto, personal mantra?

@irene5: My favorite quotes have been from Maya Angelou and Mother Teresa, but there is one from John Wesley that sums it all up, at least for me.
Do All the Good You Can
By All the Means You Can
In All the Ways You Can
In All the Places You Can
At All the Times You Can
To All the People You Can
As Long as Ever You Can
I would like to add doing good to animals to that quote.

ROSEMARY: If Hollywood made a movie about your life, who would you like to see cast as you?

@irene5: If Hollywood were to make a movie about my life, I guess Rhea Perlman, (who I have been mistaken for on occasion), or Susan Lucci would be good actors to portray me.

ROSEMARY: Puppies or kittens?

@irene5: Finally, like Betty White, I love dogs. Their love is unconditional. I believe I have seen God in the eyes of my dog. After all God is dog spelled backwards. And like the good God, dogs make our lives whole.