Everyone on the Mighty Well team is either a patient themselves, or has had direct lived experience as a caregiver for a loved one living with chronic illness. This is especially true for our newest team member, Mikayla Gempp! Mikayla’s whole family has been effected by chronic illness. Her mother lives with Lyme disease and Multiple Sclerosis (MS). Her brother lives with Asperger’s Syndrome and her father was diagnosed with Hodgkin’s Lymphoma in 2007. Through her experience as a sister and daughter, she embodies the Mighty Well ideal of being a true Friend in the Fight™!
We sat down to interview her about her and her family last month, and have shared a few highlights from that conversation below. Thank you Mikayla for sharing your family story!
Can you tell us a bit about your family’s journey? How does the concept of “turning sickness into strength” resonate for you?
My family has a bit of a wild story. My mom has both Lyme and MS – she was diagnosed when I was young with Lyme and MS many years later. In 2007, my father was diagnosed with Hodgkin’s Lymphoma stage 2b. He went through chemotherapy and radiation treatment, and was in remission by September 2008, being almost 11 years in remission now. My brother has Asperger’s, and I have Generalized Anxiety Disorder. It’s been a rough one but we all pushed through and helped each other.
Turning sickness into strength very much resembles my mother. She has had a chronic illness for almost my entire life and has gotten up everyday and works her butt off. She used to go into work early, skip lunch, and get all her work done each day with ease. She also tolerated my constant traveling for dance each week and to competitions and conventions, as well as handling my brother (he got better as he got older, but his elementary school years were tough). She never let her sickness take over her life. Even today, she does multiple jobs on the island she lives on and never stops. She’s a photographer, real estate agent, and a crafter. She does have her days where she’s down for the count, however those are rare.
When was your mom first diagnosed with Lyme? What was it like to have a new diagnosis when she was later diagnosed with MS?
My mom was first diagnosed with Lyme when I was three years old. She hemorrhaged 2 weeks after having my brother and had to have an emergency hysterectomy. She started having Lyme Disease symptoms and the doctors continued to deny it until months later they found it in her heart in 2002. They believe she got Lyme from the blood transfusion when she had the hysterectomy, but they never confirmed. I remember when I was younger the nurse coming and giving mom treatment at home and I would ask a million questions.
I don’t remember much from when she was first diagnosed, but the second diagnosis I remember more clearly. She wasn’t diagnosed until April 2015 with MS. At that time I was a junior in high school. Since MS is more new than other diseases, mom had to explain it to my brother and I. She started Chemo and Steroid Therapy 4 years ago and is still continuing, however she’s been trying to change to an IVIG transfusion for a while now. She definitely didn’t let the MS get to her. She slowed down a little bit but still continued to do everything she already was doing. I knew I had to step up on days she didn’t feel good with making my brother and I dinner, doing laundry, and other household chores. By then I also had my license so I drove myself to dance and my brother and I to martial arts so she didn’t have to worry about driving us around anymore.
How do you see yourself as a Friend in the Fight™ to your family members?
I see myself as a Friend in the Fight™ because I’ve been helping my mom out for as long as I can remember, even if it was just with little things. I helped with my brother by playing with him, I tried finding rides from dance when I got older so she didn’t have to go out late when she was tired, and I would run errands for her if needed. For example, when I was younger, I packed my brother’s and my lunch almost everyday so mom didn’t have to worry about that as one extra thing in the morning.
Is there anything positive that has come out of your family’s experience with chronic illness?
I definitely was able to see how a chronic illness can affect someone, which I think is a positive thing, because I don’t question people going through illness. My family got closer through all of this and spent a lot of time together when I was younger. As I got older my life got a bit busier, but the days mom had treatment I would be able to spend more time with her, even if it was just binge watching whatever we recorded on the DVR.
What advice would you give to other children supporting their parents through a chronic illness?
Try and help your parents with as much as you can, even if it’s the little things. Parents with a chronic illness may be having an off day or a bad day, so if they seem off, try to help and make their lives a little easier for the day. People fighting chronic illnesses are usually very tired from treatment, so sometimes if they get grumpy at you for asking lots of questions or needing their assistance when they are this tired, don’t take it personally, they don’t feel well.
Thank you Mikayla for sharing your family story with the Mighty Well Community!