How being born on Leap Year prepared me to cope, survive, and sometimes even thrive while living with multiple sclerosis.
Multiple Sclerosis, along with many other chronic illnesses, is often referred to as an Invisible disease. Patchy damage caused by an autoimmune response damaging the coating of neural pathways that transmit signals from our brain and spine delay and block signals to the rest of our body. Unlike a blunt trauma to the spinal cord, MS can leave some patchy damage that sometimes partially heals. So a person who seems mobile, and “normal” at one time of the day, may need a mobility device such as a cane, walker, scooter, or wheel chair at other times. This leaves a feeling of astonishment of lookers-on, friends, and sometimes even family members. Through the media we were taught if someone needs a wheelchair, or a cane, it’s likely from injury or old age. So there are people like me, unclassified and existing in a world that sometimes doubts us.
Multiple Sclerosis is also referred to as the snowflake disease due to the apparent randomness and uniqueness of people’s collection of symptoms. This variability is often due to location of lesions, and the different brain and spinal communications the damage interrupts. Someone may live with relatively few lesions and still deal with severe symptoms, whereas someone may have dozens more lesions that cause less functional disability.
I was born on Leap Year day, and consequently my bday is celebrated once every four years. I didn’t really understand the full concept of the uniqueness of my birthday, and my one in 1,461 chance coming into the world on that day.
After entering elementary school, when I turned eight years old I finally started to understand my birthday was a little different. In elementary school it was treated as kind of special, because it was a teachable example of lengths of months and so on. The number one question asked
“How old are you really?!”
”8, but I’ve had two real birthdays!”
”haha, your only 2 years old!!!!!”
I learned to smile and shrug, and appreciate the to-do over my “real” birthday. My mom definitely made it easier on me by bringing a homemade cake to my class.
So, having a leap year bday often lead to doubts over my credibility. If I not classified by others as 40 years old, I’m 10. Now I learned to appreciate the joy in that. 😉
I was diagnosed with MS four years after my fourth birthday (20 years old). It seemed like my diagnosis both existed and didn’t exist. I had little to no understanding of MS, and I had only been experiencing tingling and numb feelings that came and went; and extreme tiredness that sometimes laid on me like a weighted blanket. I used to pop altoids, chew gum, and pinch myself to stay awake in class. (Mormon university, no caffeine on campus; and you better believe there would have been an uproar in my apartment if I dared to brew some coffee.)
Life wasn’t that different, but I was advised by my neurologist that I shouldn’t go on the international field study to Southern India that I had prepared for that summer. Heat and humidity can lead to worsening symptoms. But I got lucky, they opened up a new study to North India. I took my daily injections to Dharmsala at the base of the Himalayan mountains. Except for the shots, it kinda felt like I didn’t even have MS.
Life kept going, stress from school work and trying to do to much go the best of me and I relapsed. I woke up one morning, and found myself unable to walk without holding on to something. One week later I started having violent, seizure like back spasms. My MS wasn’t in the closet anymore.
I was out in the open. I needed to use a cane. I shied away from public places as I didnt’ know when the random spasms would come. Nothing seemed to work quite as it should anymore. My random MS that only existed in some MRI scans and random relapses, was asserting its pretense in a public way. The disease demanded to be seen, but I still hid it as best as I could.
As a forty year old mom with two kids, it seems that my rare birthday did rub off on me quite a bit. People often wonder at me having to kids, because I seem young. Add, pushing a rollator through the neighborhood with my kiddos, and I’m still kind of a rarity in others eyes. But being an oddity early on in life, prepared me for all the experiences I’m having now. I am used to it. I grew to love my Leap Year Birthday, among other things that made me a little unique and a little different. I will always hate MS, but I love the experiences and connections with wonderful people in the MS and chronic disease community. I love the understanding and patient world view my kids are growing up with.. I love bringing people together to help them cope with this unique, frustrating snowflake of a disease. But still, most every rare real birthday wish tends to be a way out of this for myself or others. As I age I am tending to wish for just more ways to cope with this disease. We already are experiencing a wave of change in the world of MS, from new medicines and awareness. The fire is blown from the candles. Here’s to another unit of four and hopefully less MS, not more, next time around. 🤞🙏🧡🥰
Happy MS Awareness Month. May God be with you til’ we meet again.
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