Hi, I’m Amy.
Just like you, I’m trying to figure out who I am and what’s next dealing with the uncertainties of chronic illness.
My origin story
We meet mild-mannered Amy E Sparks (me!) in Raleigh, North Carolina, USA, a thirty-something IT worker married to a man far better than I deserve. One day, I started going blind in one eye. Instead of a cool superpower like X-ray vision or super speed, I found out on March 15, 2002 that I have multiple sclerosis. Beware the ides of March indeed.
The saga begins
I assembled my team, who were eager to support me even though they had no idea what the hell multiple sclerosis is. Like fledgling superheroes and other people newly diagnosed with a chronic illness, I had no clue either.
Unlike your friendly neighborhood superhero, I told everyone my new identity right away. People expressed their concern, asked me questions about the disease, and asked me what was ahead for me. I had no idea how to answer the third question..
Transformation to TheMSMom…and Beyond
I started blogging so that my friends and family could keep up with how I was doing. I was looking for the best alter ego, and I found her when my wonderful boys were born. I renamed the blog The MS Mom and talked about parenting and regularly living with MS. My boys grew, my disease progressed.
I have now avoided fatal mistakes for more than a half-century and carry an AARP card. My boys are now 12 and 13 (ack! middle school! puberty!), and their daily antics are not as cutesy as when they were toddlers. I don’t have a clue about parenting teenagers – they reinforce that thought every day – so I don’t feel comfortable giving anyone insight on teenagers.
In the 15+ years since my diagnosis, my MS has gone from Relapsing-Remitting (RRMS) to Secondary Progressive (SPMS). I’ve gone from walking a 9k to using a rollator (walker on wheels). My MS has progressed enough that I can’t work anymore. I’m in my 50’s and need to face the challenges at this stage of life, while living with progressive MS. So I need to figure out who I am now.
I know who I’m not. I don’t want to be The MS Mom. I don’t want to put myself in a box where I’m identified more by a disease than by who I am. And while my sons are awesome, I also don’t want to be identified as someone’s Mom. MS plus Mom only equals a part of who I am.
Who am I? Well, it’s harder to sum it up in one or two words without using a job title. Here are a few words that describe me:
- Geek – I’ve self-identified as a nerd since I was little. That’s why I spent more than 20 years working in Information Technology (IT). I didn’t just learn about how IT and Project Management best practices, I got certified in them. I guess that makes me a certifiable geek. These days I spend my times researching chronic illnesses, healthcare legislation, and healthy lifestyle habits.
- Blabbermouth – I like telling people stuff I’ve learned. I’m not doing it because I think I’m smarter than anybody else. I do it because maybe I’ve learned something that others will find interesting or useful. People forced to listen to me reel off college basketball stats wish I would learn things that others would find interesting or useful.
- Tweaker – My last job title was Process Management Analyst. I was supposed to look at how we did things and figure how to do them better. If I see something’s not working as well as it can be, I dig into what needs to be fixed and how to fix it. Now my tweaker focuses on chronic illness education and advocacy.
So, what next? Is anyone else asking the same question? Maybe if we explore the question tether, we can help each other answer the question for ourselves. Through support, education, and advocacy, we can work together to identify who we are.
Etc.
I once drew three cards to a straight flush…and kept my poker face.
Purple is my favorite color. As the Queen of Boyland, I need to “girl up” occasionally.
I got my Bachelor’s degree from the University of Virginia and my MBA from Wake Forest University.
- I bleed Wahoo orange and navy.
- I (correctly) believe that the ACC is the best conference.
- College basketball is my favorite spectator sport, so I’m even more distracted than usual during the ACC Tournament or March Madness.
I’m looking forward to getting to know you better!
