At 95 pounds with the body of a fawn, 23-year-old Maisie McInerney has only been able to glimpse a normal life. “She has the most unbelievably complicated medical issues I know of,” says her mother, Helen Bransford.
Born dangerously premature with her twin, Barrett, a chronic sufferer of Rheumatoid Arthritis since 11 and Lyme’s disease since 14, my friend has not been able to attend school since she was 14. Far too often she has spent her time in bed, the emergency room, or a hospital bed.
For our benefit, she lives her life transparently in front of us all: Her Instagram feed and Facebook Page, LymeChick (18,000 + followers), show the devastating effects of Lyme’s and Rheumatoid Arthritis as we see her in crushing pain, bandaged with tubes coming out, wan from the assault of her marauding autoimmune system. Yet we also see how she bounces back to her own normalcy whenever her body allows her. It is day to day, hour to hour. Yet always, as she says, “My mind is well.”
And especially observing: “She doesn’t miss a trick from 80 feet away”, says Bransford.
- What’s your BF’s name and how long have you been together?
His name is Thos Halmi. He is as interesting and unique as his name suggests. We’ve been together four and a half years. His loyalty through years of my health crises has been a really wonderful test. He has rolled with date nights ending in the ER many times. He’s proven he’s in this relationship in sickness and health, since we were 17.
2. What’s life like when you are not confined to bed?
When I wake up I’m never sure which kind of day it will be. After I’ve been out of bed
for a few moments, my pain and fatigue levels will dictate the day’s events. If I’m pain free enough to drive that is a fantastic day. I appreciate those so much more now.I try to cram everything on my to do list in on those days. The truth is, my mind has never kept up with my body. My body is tired from fighting Rheumatoid Arthritis since I was eleven, and a plethora of other chronic illnesses since age 15. But my mind isn’t sick at all. It is ambitious as hell and sometimes makes me feel lazy for not accomplishing what my inner monologue screams for. Life is wonderful when I’m not confined to my bed or my house. But I’d be lying if I said there wasn’t a bitter sweetness that follows the good days. Because it leaves me hungry for more, and unsure of when the next one will be.
3. Along with these beautiful pictures of you, can I show a pic or two from your page or feed showing you sick in bed?
Definitely, please do. I pride myself on being raw and honest. Chronic illness is ugly yet often invisible. It is important to me that people understand that beauty and illness can coexist. Just because someone is wearing makeup and their facade appears healthy, suffering can be invisible. Invisible is not indicative of faking. For years, I’ve had to deal with whispers from people and doctors who honestly thought I was faking for attention. While that accusation is ugly and belittling, I do somewhat understand it. I could see myself not understanding, if the roles were reversed. How someone could look so healthy and be so sick.
4. What would you say is your purpose of showing yourself under duress? Is it to increase understanding of your disease and also to share with other sufferers?
In 2010, I first started sharing my journey as Lyme Chick on Facebook. It began because there was nothing like it at the time. There was nobody to look to for answers in this perplexing journey back to health after a devastating and controversial disease diagnoses. Now, I share because it is a huge part of my life. Some nights start off in glam makeup and high heels and end in a hospital gown hooked up to heart monitors. That is my reality, and I know I’m not alone. I want people to know that it is okay to be petrified of your own body. To curse the rollercoaster nature of being a young person with unpredictable symptoms ruling your life. I want people to know how devastating Lyme Disease can be and I want my followers to feel heard and supported.
5. What do you dream about?
I dream about waking up feeling well rested. I dream about staring at textbooks in nursing school, instead of IV bags and CVS prescription bottles. I dream about living a fulfilling life being healthy and grateful.
6. What is the reason you were put here on Earth?
Although the answer will change one hundred times. Right now, at 22, I believe I was put here to be a voice for those who are too tired and dilapidated. I hope to represent the thousands of people who don’t “look sick” but just want to be heard and believed. Ultimately, I’ve always wanted to be a mother. So I’m excited for that sometime in the distant future.