October marks Spina Bifida Awareness Month, and the UAB Departments of Neurosurgery, Urology, and Physical Medicine and Rehabilitation are sharing stories and experiences that challenge us to raise more awareness and support for those living with Spina Bifida.
This week, Taria Jackson shares more about her experiences with Spina Bifida and the transition from pediatric to adult care.
What has your journey with spina bifida been like?
“My journey has its ups and downs but ultimately, the good has outweighed the bad in my life. I have been able to overcome many obstacles, such as driving, living independently, and being able to attain my college degree.
“I have a bachelor’s degree in psychology and master’s degree in social work from the University of Alabama. I’m now in the process of applying to medical schools and doctorial programs because my next goal is to attend medical school and become a medical doctor. Specifically, one program I am applying to is a Ph.D. in disabilities studies. My journey has inspired me to come into the medical field so that I can advocate with disabilities in all walks of life. All diagnoses and conditions are different, and I am passionate about understanding the impact of complex disease on a physiological and emotional level.”
What is a common misconception about those with spina bifida you want to dispel?
“One of the misconceptions about those with Spina Bifida is that we can’t have an intimate relationship. If someone tries to have a relationship with us, a lot of individuals assume we are being taken advantage of, as if we are not worthy of love. We are all very capable of intimate relationships.
Another misconception is that we cannot think and talk for ourselves and that we always need someone to represent us– that is not the case at all. Even if we are directly communicating our wants and needs, sometimes we get overlooked.
I have a friend who uses a wheelchair like me, and she was getting her nails done with another friend. When the nail salon offered various beverages and she chose wine, the technician looked to her friend and asked if it was okay that she have wine because she was in a wheelchair. We are capable of making our own decisions and leading our own independent lives.
On that note, we can work, we can be very independent, educated, and drive. Why does it come as a shock when we do those things?”
Do you have advice for others with spina bifida who may be transitioning into adulthood?
“My advice to those transitioning from pediatric to adult Spina Bifida care is to not give up. You will have some obstacles, some bumps in the road. That is okay, it’s part of life. You will have some people who will try to discourage you from getting to that next level. Whatever your passion may look like, even if it’s different from others, go for it.
Find a support group who is willing to support you to get you to the next level– the importance of a support group really cannot be underestimated. There are several other resources out there that can help you to reach that next level, whether they are courses on driving, college, or living independently. Facebook groups, like spinal cord injury groups, are a great outlet as well since you are able to see others experience some of the same struggles you may be encountering.
It is important to not take ‘no’ for an answer, but to keep going and pursuing, regardless of the situation. Ultimately, you have a disability, it does not have you.”
How can family and friends be an advocate, especially during the month of October?
“It is important for Spina Bifida advocates to not sit back and let others make assumptions about this disability. Social media is a wonderful tool to amplify the stories and experiences of those with Spina Bifida. It is a great way to let others know you have a loved one with Spina Bifida and share ways to advocate for them. A lot of folks in the community will change their profile photo to a yellow ribbon for those with Spina Bifida. I really do think that social media is the number one tool to use to get the word out.
And, I’ve also seen people make t-shirts with the yellow ribbon and wear them throughout Spina Bifida Awareness Month. During the month of October, and really every month, I think it is important to represent individuals with Spina Bifida and educate people who simply do not know a lot about the disease.”
How has the UAB Transitional Spina Bifida Clinic impacted you?
“Transitioning from pediatric to adult care is difficult, very difficult, but the transition of going from UAB to Children’s was wonderful. They have helped me simply by allowing me to be an adult, to feel like an adult, to come in and speak for myself, tell them about my issues, and get advice or recommendations. The team makes me feel comfortable to ask anything, and they support whatever decision I make.
Unfortunately, the older I get, the more health issues I encounter. But, my doctors are all really amazing. They are there for me, keeping a careful eye on my symptoms, and helping to make life more comfortable for me. The Spina Bifida team is true to their word: if they say they will see you in six months, they will see you in six months. They don’t let me fall through the cracks, and they really do care about me.
This past year, I learned that I am in kidney failure, so I am now in the process of a kidney transplant. When I heard the unexpected news, they let me cry and were there for me. And, even though I got the bad news, I still felt hopeful when I left the office because they really understood me, got me, and are going to take care of me.
It’s been a big transition, going to the doctor by myself and getting news by myself. I used to have my mom as a caregiver and listener in the appointments, but now, I am taking it all on as an adult. That makes me even more grateful for an amazing team who understands the emotional toll that Spina Bifida can take on someone. In transitional care, we have to go from an innocent child to being an adult who has to understand what it going on with our own care plan. The whole team, from doctors to techs to nurses…everyone is amazing. They are so compassionate and sympathetic toward what is going on versus just sharing the news and sending me on my way.”
Do you have anything to add?
“I just want people to spread awareness, to advocate, and to educate themselves about individuals with Spina Bifida. I want people to be open minded and to not assume anything. For the individuals with Spina Bifida, do not be afraid to take risks, to have a voice, to stand up for yourself and stand up for others as well. Also, for individuals who believe we can’t have a voice or a seat at the table, let me go ahead and tell you that ‘yes we can have a seat at the table, at the head of the table.’
Ultimately, I just want to be able to open peoples’ mind to understanding those with Spina Bifida. If this was your child, or even you, how would you want to be treated? I really like to advocate for living by the golden rule. People assume that those in a wheelchair cannot get around or live a normal life, so unfortunately, they get bullied or are treated unfairly.
During Spina Bifida Awareness Month, I want to break that cycle and open peoples’ mind to how much we can achieve. We can do anything that others can, and sometimes better, given our unique life experiences and understanding. Folks need to know that we can live independently and we can drive. There are possibilities and hope for those with Spina Bifida. The only thing we ask for is a chance.”