It’s been two and half years since my stroke, and my life is far from normal. I constantly strive for a life where I focus on the positive and not the negative. This may seem pretty easy to do, but the reality is that every day is a challenge.
Some days I wake up and feel really good, but I still never know what’s going to happen tomorrow. It’s important for me to cherish the present.
My focus in life is advocating for disabled people, mental health, and personal wellness. I’m a huge believer in the universe, which helps guide me to keep growing as a person. I would describe my mental health as a rollercoaster; one day I feel really great, and five minutes later I feel anxious. My body is one of the causes of my mental health struggles.
I have a rare form of Muscular Dystrophy called LMNA-CMD and it causes muscle degeneration. The damaged muscles progressively get weaker, and because the progression of my condition is slow, I’ve been walking with assistance since I was 18 years old. Scooters and walkers have supported my body while I took my best shot at being a teenager with a disability. School life consisted of an aide taking my notes, helping me get around, and staying mostly indoors because the cold weather hurt my muscles. Living with Muscular Dystrophy is definitely a challenge, but I don’t let it define me.
I started school at the University of Tampa in January of 2016. The fact that I got accepted into a university was a huge accomplishment for me. The college life experience alone was awesome! I was meeting new friends, not reporting back to my family, and living in an accessible community. What more could a girl ask for? This was the start of a new chapter in my life and I was ready to thrive.
However, I couldn’t have predicted or prepared for what would transform the course of my life nearly a year later. On December 19, 2016, I had a massive Ischemic stroke that deprived my brain of oxygen due to the loss of blood supply in my brain. I was immediately taken into surgery where a cerebral angiogram was performed to remove the clot. The procedure was a success, but sadly, the damage had already been done.
I was painfully alert, trapped inside a body that would not work, and to add insult to injury, I could not communicate. I tried to form thoughts and sentences, but was unsuccessful in doing anything with them.
I spent the next month in rehabilitation re-learning how to speak, spell, sit up, and stand. Every moment of my life leading up to today has been a battle, but I find my happy place by getting together with friends, traveling, and advocating for disability rights for myself and with healthcare professionals.
Traveling has always been a passion of mine and has given me great joy. I’ve been fortunate to visit Wisconsin, Florida, the Carolinas, and recently, California. But as exciting as traveling can be, getting around as a disabled person and having to constantly investigate whether places I want to go are accessible or not is exhausting.
Navigating in a world mostly designed for able-bodied people has its ups and downs. I’ve made it part of my mission to review places I visit, so that fellow disabled people can be better prepared while they travel, or visit restaurants, attend concerts, etc. It’s been a fun journey breaking down my experience based on restroom size, access ramps, seating, and staff!
Many who are disabled have a family member, friend, or caregiver who help us live our life to the fullest. The one person in my life who has never given up on me and who challenges me to fight through my struggles is my mom. She is a nurse, cancer survivor, my best friend, and my biggest supporter. I’m forever grateful for her courage, her strength, and her determination. My strength is because of her resilience. Thank you Mom!