We’re excited to introduce you to the always interesting and insightful Autumn Skylar Dolinger. We hope you’ll enjoy our conversation with Autumn Skylar below.
Autumn Skylar, thanks so much for taking the time to share your insights and lessons with us today. We’re particularly interested in hearing about how you became such a resilient person. Where do you get your resilience from?
My whole life I have been surviving in spite of circumstances. I came into this world forced to be resilient from my very first breath, and through every difficult experience that Resilience grew.
My birth was highly traumatic for my parents, and it was the first indicator of a life filled with struggle. My mother had a silent placenta abruptipn, leading to blood filling her uterus. I was born through a C-section, floating in a pool of blood. I was blue due to lack of oxygen, and when I was able to cry those first tears were of blood. Originally it was a question of if I would make it, but I was strong enough to fight. Through my childhood I experienced abuse at a family member’s hands, and severe bullying from school mates, but I continued that initial fight. It was never a equation of “if I could” only that there was no other option. At 14 I lost my first love to suicide, and it was a defining moment where I began to question my ability to keep surviving through all that I had. I struggled, definitely, with that question. But, in the end I always found some hope to cling to. At 16 my health journey began and I was suddenly thrust into life saving, emergency brain surgery. I was devastated, especially that upon awaking a whole slew of mobility and cognitive problems had arisen. That being said, I never once thought about giving up during this. I had fought tooth and nail to get that hope back, I wasn’t going to lose it again. It was a challenge unlike any other, but I had a lot of love around me that kept me going. I think all of the struggles I had faced that made that strength waver had prepared me for this, each near insurmountable goal that I achieved made me able to face the next mountain ahead of me. I am 25 now, with so many life changing surgeries under my belt. Brain surgeries, fusions of my skull and spine, an ostomy bag, each one more challenging than the last simply because of the grief of the continuous cycle. I get better then slowly lose that better until I am back spending my days in bed, only to have my doctors discover some new way in which my body has failed me. It has been 5 years since the last time I walked on my own, with no mobility aid, and every time I get close to being able to work towards this I enter into the cycle again. I’ve grieved countless times this perfect life I had imagined for myself, and each time its a new facet that is chiseled away. I am facing now my 3rd Brain surgery and the question of “can I do this” is a constant in my mind. But, every challenge that came before me has prepared me. In some way, they were a gift, because challenges less than these big huge things I’ve accomplished are simple in comparison. So, where I got my Resilience is that it was something I was born with due to the circumstances of my beginning. I came into this world fighting, because that was the only option. The continued growth of that Resilience, however, that’s all me.
Great, so let’s take a few minutes and cover your story. What should folks know about you and what you do?
Since entering into adulthood I had a very significant choice to make, give up on my dreams or change the way in which I accomplished those dreams. I chose the later. Ever since I was young I dreamed of performing in any way I could, and that is what I’ve done with the good days I have. I act, sing, model, everything performance wise I can get my hands on. I’ve been lucky enough to this past year enter into the world of runway modeling. I’ve worked with an organization called Runway of Dreams that focuses on working with disabled models modeling adaptive clothing from major and minor brands alike. I was a part of their 2024 New York Fashion Week Runway campaign and I worked with one of the college programs they help support this past May. The goal is to have disabled models, such as myself, gain visibility on the larger scale and to promote these adaptive products on a larger scale. Eventually, the hope is that adaptive clothing will be available in most clothing stores and that disabled models will be just as prominent as able bodied models. Now, I am awaiting my 3rd brain surgery soon my days consist of a lot of rest. I hope to reenter these performance spaces before the end of the year, after I fully recover from what is ahead.
If you had to pick three qualities that are most important to develop, which three would you say matter most?
I think the three qualities that were most impactful for my journey were: hope, courage, and creativity. In the beginning, I thought I had none of these and it took a long time to be able to reflect on my life and the challenges I faced and recognize these were a part of me all along. I’ve struggled with self esteem issues and imposter syndrome throughout the entirety of my journey, and they have held me back. What’s most important is to accept that there are things you may not like about yourself, but to keep going inspite of them. Find your hope or your courage, even if it is through an external source. The more you fight the more you realize that you are your own hero. That these times you’ve questioned your ability but continued imspite of that, you were still fighting for yourself. Creativity as well was a large part of my inner strength. I am a creative at heart, and found through song writing I was able to turn my experiences into something beautiful. It helped me to feel like there was a purpose to all of the bad, some reason I could turn to. It took the darkest times of my life to find that creative response, but once I did I found it was another tool to keep me going. You need to find that beauty you can make from the bad, your reason to keep going, and once you do never let it go. One day you’ll look back at everything you’ve accomplished and realize it was you that made it all possible.
All the wisdom you’ve shared today is sincerely appreciated. Before we go, can you tell us about the main challenge you are currently facing?
Right now, with another brain surgery in my future, I am facing yet again the reality that I do not have control over my disabilities. I continue to reach a point of recovery from one condition and I believe myself able to push through and overcome, but the reality is there is hardly anything any of us is able to control about disability. I was born with mine, like many, but they did not impact me until I was 16. After that first brain surgery it was a domino effect where one symptom or condition lead to another and another and that effect hasn’t stopped since.
At 11 I was diagnosed with a brain condition called Arnold Chiari Malformation which in basic terms means my skull wasn’t large enough for the bottom part of my brain. Because of that, it led to brainstem compression and increased intracranial pressure and a whole lot of other nasty things. From that first surgery, I didn’t get better but got worse. It took over a year and multiple doctors to finally find one who would listen to me. We discovered 2 previously undiagnosed conditions that I was born with: Hypermobile Ehlers Danlos Syndrome and Cranialcervical Instability. These caused me to need even more surgery: another brain surgery to fix my chiari, a metal mesh placed between my scalp and dura, and a fusion between my neck and my skull. From there the diagnosis continued with Ehlers Danlos Syndrom being at the center, creating a web of comorbidities that all came with the potential of serious complications. I had to have a revised fusion because somehow my metal rod broke and we discovered I never fused from the first one and I now have a permanent ostomy bag because the condition impacted my ability to use the bathroom normally. Now at 25, 9 years since my very first surgery, we have discovered my chiari has gotten bad once again as I have no choice but to be operated on. I am having to continually face obstacles that no one prepared us for, and question what life could have looked like if only we had known at birth to look out for these issues. I wonder how many permanent issues caused by not treating these things sooner could have been circumvented, and though I always wondered these things it hits harder with each surgery I face. I wonder how much more I will lose this time around. That being said, I have no plans to give up now. I have a fiance now, a home that’s ours, 3 wonderful cat children, and a vision of the life I want that I can still have disabled. What I’m planning to do is what I have already done with every challenge Ive been faced with in the past. The good thing about having a history of overcoming obstacles is I’m practically a pro. That doesn’t make the mental load go away, but it makes it easier knowing a younger me has already done this fight, all I have to do is what I have already done time and time again.
Contact Info:
- Instagram: https://www.instagram.com/autumnskylardoeseverything/
- Facebook: https://www.facebook.com/AutumnSkylarUkulele/
- Youtube: https://www.youtube.com/@autumnskylardoeseverything
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