Alan's Story

This week has been crazy busy with lining up shoots and meeting some amazing survivors. Can't wait to share more...

So check back! For now, I am honored to present the second Q&A in our series...

1) Describe the type of AVM you have? What was the first sign?

My AVM was a cerebral hemorrhage that burst in June of 1993. I experienced symptoms for about a week after a rigorous Boy Scout hike. There was no way of telling that the symptoms were ever related back then. I experienced nausea, which led to vomiting, and an average cold that lasted for a whole week. I would be sent home from school because they just thought I was sick. The pediatrician was pretty confused about my symptoms and just thought that I was allergic to something. He would tell me to use apple butter instead of peanut butter because he thought that was the problem.

2) How did you eventually come to receive treatment?

Ironically, at a Boy Scout meeting I started getting a pounding headache and asked to go outside to see if a little fresh air would help. After about two minutes I lost my voice and luckily before I passed out my mom had arrived from her walk. Fortunately, my dad’s ex-girlfriend had a son in the same Boy Scout troop and she helped my mother rush me to Urgent Care. Once we arrived to Urgent Care they called an ambulance in to transfer me to the hospital because it was something more serious than they could treat at Urgent Care.

3) Who are/were your main doctors, where were you treated and how was the care?

My main AVM surgeon was Dr. Tong. Another Main doctor was Dr. Peterson. I was treated at Children’s Hospital in Kearny Mesa. The care I received was pretty good. My mother told me that they wanted to eventually discharge me to a hospital to Encinitas, but my mom fought it because she didn’t want me to be too far from her house. They had a family meeting with the doctors and my family, and they wanted to pull the plug because they didn’t think I was going to come out of my coma. My mom asked them if it was their son if they would pull the plug, and Dr. Peterson understood where she was coming from so they came to a compromise to move me to the convalescent hospital.

4) How is your health now?

My health now is very well. I have not had any more symptoms of an AVM. Dr. Tong decided to stop seeing me afterwards because there was no trace of any further complications. Just coming out of the hospital I was completely G-tube fed, and they told me I would never be able to eat orally. I am a fighter and wanted to eat again and have been eating orally since 1995. Luckily I had a very good speech therapist to make this happen. My next goal has been to be able to walk on my own. I work hard every day using a walker to help achieve this goal. I am pretty independent with all of my daily activities except for cooking meals.

5) How has having an AVM changed your life?

Having an AVM has truly opened my eyes to what I was blind from for many years. It has made me look at the disabled community at a different angle. I am more empathetic with every case because I understand the challenge they have to face every day. Having an athletic background has helped motivate me to do my best in everything I try to do. I also do no give up as easily.

6) What has been your biggest challenge in the battle with AVM?

My biggest challenge has been getting acceptance from the society. I have been fortunate to be around lots of people who understand the needs I require and are willing to help. Getting through school and not being able to use my hands to do my own writing was also a big challenge, along with being a slow reader and having to have assistance.

7) What do you think a documentary about those surviving AVM can achieve?

I believe a documentary about surviving AVM would open up the eyes of our society. There are people who have internal disabilities, and most of society thinks that they are slow or dumb. This is not true and a documentary would show them that we are average people, if not above average, and are capable of doing more then they think we can do.

8 ) What are your hopes for the future of AVM research?

My hopes for the future research is that they have success in finding a way through DNA mapping to alter genes to not replicate the AVM.

9) What has been the biggest lesson you've learned throughout your journey thus far?

The biggest lesson I have learned thus far is to look on the positive side of things and always strive to come out successful no matter what anyone tells you.