By Lindsay Magee
It’s been quite a year or two! And it’s been disappointing that we all couldn’t get together in Texas in the last two years to learn more about agenesis of the corpus callosum (ACC) and each other. I wanted to share and reflect on my first 2018 conference in California to encourage adults with a callosal disorder or parents who may not know what to expect consider attending in July.
Back in January 2018, I went to see my neurologist for my annual appointment. Before my appointment, my sister and I were going through my childhood physicals and noticed the words Agenesis of the Corpus Callosum. We asked my neurologist and that’s how I learned at age 30 that I have Partial Agenesis of the Corpus Callosum (P-ACC). My sister and I did some research about P-ACC and we came across the conference that was going to happen in California that same summer (2018).
Words cannot describe how I felt after leaving the conference. I felt happy, relieved, honored, overwhelmed, and still a little confused. I learned so much, in so little time. My parents did everything so right for me and the best for me, but at that time (in the 1980’s), they didn’t know the name for it. They never have and never will give up on me. The main thing that I learned at the conference is that routine is key. Dr. Lynn Paul mentioned how people with ACC have a certain amount of energy and to use it wisely.
I was so overwhelmed that weekend with how wide the spectrum of ACC there was. I felt like I stuck with my sister the first day because this was all new to me, overwhelming, and I didn’t see anyone that “looked like me”.
On Saturday morning, I met two ladies that were both very warm and welcoming. We went to Boomers (entertainment park) with the rest of the Adults with ACC. I really enjoyed it and was glad I went.
My sister has been my biggest support throughout this whole weekend and journey. We talked things through. She took detailed notes and met/exchanged emails and numbers with other parents/siblings. I am honored and blessed to call her my sister. I had a lot of fun with her, just having a girls’ weekend. I’ve always had and will look up to her.
On Sunday morning, the last day of the conference, I was honored to be stopped by a mother, of a 4-year-old girl. She was just in awe of how I looked and acted. She told me that she would be honored to have her daughter be like me.
When I was on the plane flying back to Boston, I reflected back on my life, and having P-ACC explains so much:
- Seizures – I started having grand mal seizures in the 8th grade into my late 20’ That was a hard time, but my family and I got through it. I now have been seizure-free for 4 years now.
- Potty training/ bedwetting – I remember trying so hard to keep my bed dry at night. My parents thought of many ways to help me. My father would give me a dollar if I went to the bathroom before going to bed. My parents bought me my favorite Beauty and the Beast bedsheets, an incentive to keep my bed dry. I kept wetting my bed until the age of 10. I don’t remember what sparked but something just changed/happened.
- Learning disability – Everything at school was very hard. I had to take extra time on everything I did: taking notes at school, tests, homework. My parents wanted the best for me, so I went to many tutors (math and writing tutors). I would go before and after school for help.
- Keeping up with car/dinner conversations – I am in a family of 5, so there was always laughter and conversation going on in our home. Keeping up with conversation was always hard for me growing up and still is problematic today. If I wanted to chime into the conversation, it was too late. They were already onto the next topic. At the conference in 2018, I learned that I don’t have a lot of energy in my reserve tank as others do. It’s like being asked to drive from our hotel in California back to the LA airport using backroads vs. the freeway. I can get there both ways, but I am going to be a lot more drained using backroads due to the time it takes behind the wheel and the number of decisions I need to take to get to my destination. I have and always will take the backroads.
- I prefer cold drinks over hot drinks – Ever since I can remember, I’ve always preferred cold drinks, milk, water, milkshakes. Presently, iced caramel macchiato from Starbucks. If I would drink something hot, I have a really bad gag reflex. I would always say “it went down the wrong way.” I also have a small mouth. Going to the dentist is NOT my favorite thing to go to. Whenever I open my mouth, they always say, “open wider” and my response every time is, “I am!”
- High pain tolerance – When I was a little kid and even now, I have a high pain tolerance. If I would fall, I would brush myself off and keep on going. Back in my first year of college, I went to my first spin class. In the middle of the class, my foot slipped off the peddle, and then the peddle hit my calf. I didn’t think much of it, because I didn’t feel any pain, but when I looked down to check out my calf after the class, it was bleeding galore! I had to call 911, and I received 11 stitches that day. A side effect of my seizure medicine is that I get many black and blues randomly. Sometimes I know how I get them, but the majority of the time I don’t know how it happened.
- Sports – My siblings and I have played many sports growing up. I have played, tennis, swimming, golf, volleyball, and I’m a black belt in Tae Kwon Do. When I was born, the doctors told my parents that I would be in a wheelchair for the rest of my life. I proved them wrong! I was always so determined, and I always persevere on anything I do. For example, learning to ride a bike. I didn’t want to give up and I really wanted to learn. Now, biking is my favorite thing to do. My bike is my main transportation going to and from work in the city. I also bike in an annual 40-mile bike race.
I have been working in the education field for 10 years now. I graduated from Wheelock College, and I am a Pre-K Lead Teacher working in Boston. I have always been and always will love working with children. I started working with children, by babysitting and volunteering. I volunteer at Children’s Hospital, Boston. I hold babies whose parents are not there with them at that time.
We are now starting the year 2022. Besides the pandemic, I had a wonderful 2020 and 2021! You are probably thinking, why? Or you’re crazy! But wait for it… I got married in July of 2020 and I became an aunt in August of 2020! My husband is very patient with me and has been learning about P-ACC beside me along the way.
We are looking forward to the 2022 Conference in Texas to learn more about Disorders of the Corpus Callosum!