On Losing Laura
Laura loved the ocean. She loved everything about it, but most especially sea turtles. As a child, she trained to be a ballerina and, when illness made that impossible, maintained a life-long devotion to dance. She sometimes referred to herself as Princess Laura or Doctor Laura, and would offer to perform complicated surgeries at her “home hospital.” And she’d risk life and limb for Diet Coke and gummy bears.
Her vivid imagination and wry humor helped her escape the pain and trauma she experienced. She was always ready to welcome people into her communities without judgment.
Laura was diagnosed with Common Variable Immune Deficiency (CVID) several decades ago. Since that time, her care was spotty at best, until she finally found a specialist who would work with her to get her what she needed. Unfortunately, by the time she found that specialist, she had already fallen victim to extensive organ damage. She also acquired a chronic chest wall infection due to the mishandling of her port. She entered hospice care last year and found the kind of compassion that had been missing before. We are profoundly grateful she was able to experience that compassion, however briefly.
There are a million things Nancy and I could say about Laura and the struggles she faced. Instead, today we want to focus on our own relationships with her, giving you a joyful glimpse of a friend we were privileged to have in our lives
How did you and Laura meet?
Lisa
I had a particularly upsetting breakup (as 20-somethings often do) and, since I perceived my diagnosis as part of the problem, I decided to learn more about it. Groups on Facebook were a fairly new thing. I found one about my diagnosis and a kind friend, Gabe, pulled me into a private conversation with a group of young folks sharing my diagnosis. One of them was Maura. Nope, I didn't spell that wrong, she was using an alias at that time. She also didn't have a photo posted.
I decided to go to the Immune Deficiency Foundation (IDF) Conference in Orlando, to learn more and meet some friends. I was apprehensive traveling alone, but I boarded the hotel shuttle and heard, "LISAAAAA" and a total stranger was smiling at me.
I must have looked at her like she had lost her mind. "It's Maura. But you can call me Laura, as that's my actual name." From that moment on, we spent the majority of our time at the conference and our free time together. The rest, as they say, is history… until we decided to go to a retreat in Rye Brook, New York.
Nancy
I have to give my mom all the credit! I had been diagnosed with CVID only months before, and we decided to attend our first IDF weekend in Rye Brook, New York, to learn more about this new chapter in my life. I was mingling (by which I mean I was milling about, trying to avoid people), when my mother, the social butterfly, insisted there were two women I had to meet. I reluctantly agreed simply to humor her, knowing I’d have a polite conversation and then be on my way.
I was wrong. That’s when I met Laura and Lisa, the two women who would first become my CVID buddies and eventually two of my best friends. We sparked! An instant connection was made - three smart, funny, sometimes snarky, women who would always have your back. We immediately connected that day on Facebook, but our friendship ultimately transcended social media and illness support.
The moral of the story is: sometimes your mother is right. (But don’t tell her that.)
However, the real moral of the story is: you never know when or where you’ll meet the people who will change the course of your life.
What did you most admire about Laura?
Lisa
I admired her perseverance. She never treated any of the adversity she faced as though it was a tragedy. She rarely wallowed when things were hard and played the hand she was dealt with incredible grace. She wasn't one for "warrior" imagery, as she felt it was more a journey. She took things in stride as they came, even to the end.
Nancy
Ideally, this question would be answered in the form of a long list, because asking what I most admire about Laura is like asking for my favorite ice cream flavor. (Answer: all of them.) I was often in awe of her. First and foremost, she was a survivor. She overcame. She never lost the light within, her sense of humor, or the desire to share her hard-fought life experiences and her training as a licensed clinical social worker with people who needed her help. I was often the lucky recipient of her advice, and not just in medical matters. I felt just as lucky that she valued my opinion, too.
To find out what else I admired most about Laura, I can provide an annotated dissertation upon request.
What is the biggest lesson Laura taught you?
Lisa
Laura taught me so much. Not necessarily about CVID or how to navigate chronic illness, but a lot about myself. She made me feel valuable and demonstrated that even life-limiting illness didn't have to be life-defining. I am so much more than a diagnosis. Without this lesson, I would not be the person I am with the confidence to put myself out there, even when it’s difficult.
Nancy
Laura was pragmatic about her illnesses in a way that I found awe-inspiring. She spoke of surgeries, infections, and near-death experiences matter-of-factly, telling me that it wasn’t worth being scared about what had already happened, and there was no time to waste on fearing what could happen. She also reminded me that while she wasn’t afraid, she did take it seriously, which is why she was proactive about her care. However, she wasn’t completely immune (no pun intended) -- her experiences molded her, lived within her, and sometimes haunted her.
Laura taught me that I might be afraid (and I am often afraid!), but that avoiding what came next was never the smart option. She held my hand from afar, reminded me to care for myself, and always treated me with love, humor, and kindness.
How do you think Laura would want to be remembered?
Lisa
She would want to be remembered as someone who lived her life to the fullest and found joy in the most unexpected ways. She cherished what she could do to laugh, even if that was putting a bowl on her head or bedazzling a rented (oops) IV pump. She wanted people to feel joy, not dwell in sorrow because she's gone.
Nancy
She often told me she worried she wasn’t making a difference. I told her each and every time that she had helped more people than she could have even imagined. I wasn’t exaggerating. The devotion she inspired among friends, acquaintances, and friends-of-friends-of-acquaintances was legendary. First and foremost, she would simply want to be remembered, to know that she was living in the hearts of everyone who met her, and by the many people who crossed paths with her virtually. She would feel so lucky. The truth is, we are the lucky ones.
Laura succumbed to the consequences of CVID on June 24, 2020, not long after making the decision to stop immunoglobulin replacement therapy. She is survived by a large, loving (and largely online) community of friends, and her long-term, dedicated caregiver, a stuffed bunny called Chloe Zoe.
A stuffed bunny named Chloe Zoe and dear friend of Laura’s.
