E Adams's interview
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How did all start?
Brain malformation was already occurring In utero, doctors wanted my mother to terminate the pregnancy
Do you already have a diagnosis? How long did it take you to get it?
I was diagnosed at birth
For what medical specialties have you been treated? What has been the most useful specialty for your?
I didn't require any extensive therapy despite the doctors believing I wouldn't be able to walk, talk, or feed myself and wouldn't live past the age of four. I have an annual MRI and MRA to monitor all the stuff that goes on in my brain.
What has been the most useful thing for you so far?
Being informed and not treated as if I had not developed properly. Although I could easily qualify, I don't consider myself handicapped. My surrogate shares a lot of medical conditions as I do, and she has helped me cope with some symptoms on my own.
What have been your biggest difficulties?
I have PHACES syndrome, and that covers a wide spectrum of conditions I have. The thing that affects me the most in my day-to-day life is my monoscopic vision and the consequent absence of depth perception; I use my eyes independently of each other due to my hemangioma swelling one eye closed as an infant, so they did to develop quite right.
How has your social and family environment reacted? Have your social or family relationships changed?
It's been this way since I was born, so my family hasn't needed to adjust at any point during my life. Workplace and others don't quite grasp the whole picture, and rarely do they even know what most of this stuff is, so they don't think to approach me differently.
What things have you stopped doing?
Since I have tortured major arteries in my brain, I can't experience any G force or the artery will constrict around itself and cause a massive stroke. If I hit my head particularly hard, I must closely monitor myself to make sure my cyst wasn't ruptured. I struggle greatly with balance because of my eye situation and have had 8 surgeries on my eyes to try and improve this.
What do you think about the future?
I was just diagnosed with a brain aneurism, which brought all this medical stuff back to my attention. I'm not worried, and I've been this way my whole life, so it's... just the norm for me.
So far, which years have been the best years in your life? What have you done during them?
Complicated question, traumas, and depression have made this hard to answer, as I'm still working through a lot and realizing my childhood had abusive figures in it. My recent life has been extremely difficult with processing all this, leading to severe depression, self-harm, and suicide attempts. I am beginning to improve and am currently in a much better headspace.
What would you like to do if you didn’t have your condition?
Skydive, ride rollercoasters, scuba dive, but I don't really see it affecting my life much compared to if I didn't have it. Though based on everyone around me saying so, I think my life might have been a lot different, for better or for worse. But that's the way with all things.
If you had to describe your life in a sentence, what would it be?
Too complicated, I don't think I can answer this one.
Finally, what advice would you give to a person in a similar situation?
I would help people with similarly rare/detrimental/etc conditions see them not as something wrong or broken with them, but rather something that defines who they are. It's pretty, being alive when everything is working against you, medically. I mean I'm a disaster! But I'm healthy, functioning, and happy to be the way I am. I think other people can be too.
