My name is Lisa Deck and I’m so thrilled (and honored!) to be sharing my personal story with Keeping Mommy Sane today. My friendship with Jessica began when she worked in media advocacy for the American Heart Association and I was one of her projects. Looks like we’re still at it nine years later 😉 Fittingly, today is World Stroke Day…a day to help spread public awareness of the world’s high stroke risk and stroke prevalence.
Most people I encounter don’t know that I am a three-time stroke survivor. My first stroke occurred when I was just 21 years old, one week before my college graduation. Most of my friends were going to American University’s graduating class Booze Cruise while I was checking myself into Georgetown University Hospital.
I had all the typical signs and symptoms of stroke — my entire left side was numb, I had a severe sudden headache, confusion, trouble speaking out of the side of my mouth…yet I didn’t know I was having a stroke. Neither did the first hospital I visited who sent me home with a migraine diagnosis. This was the beginning of my battle against stroke.
My strokes were caused from a rare brain disease called Central Nervous System Vasculitis. I had two subsequent strokes in the following four years. My treatment for the strokes and the disease included Coumadin (a blood thinner), Cytoxan chemotherapy and the steroid Prednisone.
My disease and strokes were tough, but managing and surviving the treatment was even worse. Side effects included terrible fatigue, major weight gain, depression, early menopause, Osteopenia, hair loss…a real rough road for a few years. I was often too weak to walk and had to go through occupational therapy to gain strength and motion back in my hand.
It’s only in retrospect that I recognize how difficult those few years were. I was stubborn though — and a fighter — continuing to work, exercise and socialize during my treatments. In my early 20’s, I wasn’t going to give in to this disease. There were times that my mortality was questioned, yet I never truly believed it. I think my close family and friends worried about losing me…which had to be hard for them. I can never adequately thank my supporters and loved ones during these four years. It was such a challenging time for me and those around me.
Today, I am a fortunate 39 year old woman who is married to a supportive, loving husband and mom to two awesome children. I live close to my parents and brother, and have amazing friends and community around me.
I am home with the children, not just because I want to be but because I was placed on disability at age 25. I still have numbness on my left side, especially during times when I’m over-tired or stressed. I also get fatigued easily and occasionally has difficulty finding words readily, another effect of my strokes.
My life has not gone as planned, but I wouldn’t change a thing. My illness somewhat defines me — not as a victim — but in my strength of persevering through the hard times. My illness taught me grace during adversity, the importance of a support network, patience, faith and giving in to God’s plan. The bright spot of my illness is that I learned to live life fully and learned a way to feel good- volunteering and giving back.
I have been an advocate and volunteer with the American Heart Association for thirteen years now. I volunteered in the AHA’s National Advocacy office in Washington, DC for four years and now take part in local and state events in RI and MA through fundraising, public speaking, Heart Walks, Jump Rope for Heart, road races, obstacle courses and Lobby Days.
This year, I am honored and privileged to be serving as a 2015 Go Red for Women national spokesperson…one of the Go Red for Women Real Women, Class of 2015.
The Real Women share their stories across the country to raise awareness about women’s risk for heart disease and stroke. We are working to educate and empower others to live long, healthy lives. As part of this campaign, you can learn more on my Facebook page — ISurvivor Lisa Deck. This page provides information, inspiration and calls to action about heart disease and stroke. I’d love for you to join me.
Andrew Bennett says
Thank you for sharing your story Lisa. An Inspiration to many.
Krystyn @ Really, Are You Serious? says
Thank you for sharing your story. I had no idea there were conditions like your brain disease that could cause repeat strokes. I’m glad you kept going back after the first hospital basically told you that you were wrong.
Pilar says
What an amazing, inspiring woman! Thank you for sharing this story – I had no idea that certain diseases could trigger strokes. We’ve dealt with infant stroke, but know very little about it from a young adult/adult perspective.
Melanie says
Oh Lisa, you’ve been through so much. Thank you for sharing your story. It’s inspiring to read about women who prevail after going through trauma.