The Comeback Journey
Story told by Dana Rivera.
I am Dana Rivera, at the age of 44, I suffered a stroke from a genetic condition unknown to me. It was a PFO, an opening in my atrium walls.
Before my stroke, I only knew one person in my life that suffered a major stroke at the age of 40. The stroke left him with right side paralysis and he was never able to recover. That was 40 plus years ago when there were no therapies like there are today. Therapies were kinda like the dinosaur: non-existent. Survivors were given the prognosis ‘if you’re not better in 6 months to a year, you can forget any type of recovery.’
Fast-forward to the present day. My own personal journey with a major stroke showed me the progress survivors can make and reach today. However, support 12 years ago was not the same as it is today.
The damage to my brain, 12 years ago, caused paralysis on my left side. I dug deep down inside to pull out my resilience, which propelled me to reach my highest goals. To say the least, it wasn’t easy; a lot of physical, mental, and emotional work was applied. In addition to physical and occupational therapy, I did what I knew I had to do just as I once did prior to the stroke. I committed a full extra hour a day to my recovery. I knew hard work sometimes pays off and the uncertainty was always there: front and centered.
Mentally, I applied motivation and determination that I had prior, to making progress with my hand, arm, and leg movements. That took looking outside my box. Asking myself what I could do to help move my progress along. It started out with daily walks at the beach, throwing a tennis ball back and forth to my husband and my walks were in a specified area that had special meaning to me. There were days I emotionally didn’t think I would get through. There was no one that I knew of who suffered an event like mine that could understand how I was feeling. There would be days I would cry and wish things were different.
At that time, I remembered, I leaned on my mom. My mom was a cancer survivor and understood the loss and uncertainty I was feeling. She was my inspiration and champion. Along the way to my comeback, my journey taught me a lot of lessons. How does our society look at people with disabilities, whether permanent or temporary? How can we redefine who we are as an injured person?
From language and communication to friends, family, and the outside world’s interaction, they first come upon someone looking through their own lens, they are creating an alternative scenario in their heads of what happened to us.
The raw and real version of our story and the impact it has on us isn’t always correctly assumed. I was in the first two months of my recovery when my family took our annual vacation to Lake Tahoe. To say the least, I was apprehensive to go. My husband, Rick, thought it would be really good for me to re-enter myself into society. Being very vulnerable still and insecure I trusted I could walk into a store in Tahoe City.
One thing I encountered, a lady who assumed in a split second that I had broken my leg, due to a slight limp to my gait. “Did you break your leg?” She asked. At that moment, I was crushed! The confidence I was wearing was stripped away into insecurity. My response to her was: “No, it isn’t a broken leg, it was a major stroke...”
At that moment, I knew I had visible scars and did not look 100% whole. My scar was very visible. The vulnerability was frightening. It was front and center! It made me feel small. I questioned myself, will I ever be whole again? At that moment, I wanted to cry, because I realized the chances of making that comeback were uncertain.
Society has been trained to see deficiencies as less than, rather than as inclusive. It is as old as time, we as survivors know we are still the same person with feelings, compassion, love, light for ourselves and others.
Technology also has provided more of a platform today to voice and share and offer others a support network. In addition, technology has allowed us to educate communities to understand what a stroke is and what it can take away and leave us with.
I have been able to take my traumatic event and redefine myself. I was blessed to make a full recovery. Furthermore, I am continuously spreading stroke awareness in communities as a stroke facilitator in stroke support and caregiver groups for the last eleven years.
My mission is: If I can just help, inspire, and encourage just one survivor, then I used my purpose!
Ojen here! Coming in with a design suggestion. Perhaps it's not actual design, but a way to navigate ourselves and generations to come. I would like to ask, “How might we avoid quick assumptions and biases?” As a society, people only go by example, but then if there is no example, people just stare at differences or even start to ask questions. These examples can range from racial discrimination and stereotyping ethnic groups to a person who is physically or mentally challenged. Exhibit A, take me as an example, right now, I nearly have complete paralysis and for the last 2-3 weeks, I have been driving my wheelchair with a mouthpiece. When people see me on the streets, they immediately ask me “Were you in a car accident” or “Did you get shot?” I usually respond with “No, I have a muscle weakness disease called Congenital Myasthenia Syndrome.” People don't know, because we are all human and we have limited knowledge of everything; hence, people make assumptions and biased conclusions. Another example is, an introvert, a typically reserved or quiet person who tends to be introspective and enjoys spending time alone, as Merriam-Webster Online Dictionary describes it. Non-introverts tend to believe that introverts are closed off and not easily sociable. In reality, a little bit more understanding and compassion towards an introvert will show who that person really is. Realistically, our society should leave judgment alone. We can all be more inclusive in such a diverse society, by eliminating the following observations: who a person is, where they’re from, what they look like, or what their capabilities or incapabilities are.
Going back to my question, “How might we avoid quick assumptions and biases?” Like teaching etiquette in society, society should ultimately design itself to eliminate assumptions and bias. The design strategy for this particular instance is to be more mindful and compassionate, giving society a chance to reshape itself to eliminate misconceptions through education and insights. This could happen through informing and storytelling to build compassion and empathy. Teachers, parents, and first-hand individuals, who experience situations, can enlighten those who just don't know; subsequently bringing awareness. Enlightening people is important in order to deliver different perspectives and shift society to avoid quick assumptions and biases. This approach will eventually remove assumptions and biases from people's minds and then, and only then, the youth will not misinterpret settings and naturally become more mindful. This process, a design process to reshape society, will be successful through empathy because empathy is powered through information and people's stories.
Let’s be mindful!