Tuesday, October 25, 2011

My First Post!

Even though I don't set sail for a little under three months, my Semester at Sea (SAS) journey really started over four years ago. I'll start my blog there to help put things in perspective. :0)



I first heard about SAS from another vendor at a study abroad fair during my sophomore year in college. As I was touring the various booths, the SAS brochure jumped out at me. I talked to the representative at the booth and knew within a few minutes that I would do everything possible to get me on one of those ships someday. The representative was really nice and gave me one of his last DVD's since I was so interested. I remember calling my mom later that evening and saying how much I wanted to go on the trip. I knew it would be a difficult thing to accomplish, but I didn't know yet just how difficult.



Four days after I first heard about SAS, I found myself in the emergency room with what I thought was a strange flu. After many tests and doctors appointments over the next few days it was discovered that I actually had suffered a stroke. As you can imagine, I was quite shocked since up until that point I was a healthy and energetic student and competitive soccer player. I found out that the stroke was due to a hole in my heart which I had closed through a fairly simple procedure on Halloween, 2007.
Though the procedure was a success and I have not had any more strokes, my health continued to deteriorate. At one point I was so weak and uncoordinated that I needed help to sit up. I remember watching the SAS promotional DVD and crying because I thought I would never be able to do something like that now that I was so sick.



Over the next several years (and MANY doctors/hospitals) I found out that I had a genetic condition called Ehlers-Danlos Syndrome which causes the collagen in the body to not work right. This set me up for frequent injuries (usually joint dislocations) and vascular complications including the hole in my heart that led to the strokes. I also found out that I had a condition called dysautonomia which is where the autonomic nervous system does not work correctly. With the help of hard work and up to 17 medications a day, I saw an excellent recovery from the stroke. Within just four months of the stroke, I was walking short distances and had good enough coordination that hardly anyone would notice anything was wrong with me. The dysautonomia symptoms became my main hinderance because I felt like I had the flu or was about to pass out most of the time. I also began to have episodic weakness and seizure like episodes (I would shake but still be fully conscious.) Daily life was an enormous struggle, but I was able to back to school and continue my rehabilitation exercises. I was still in my wheelchair about 80% of the time when I left the house/dorm, but I did see slow improvements in my endurance and ability to stay upright without blacking out.



Through all this, I still kept studying abroad in my mind. I signed up for a summer program in London but was not able to attend due to complications from a digestive surgery. This was a huge blow, but a few months after I would have been studying in London, I began to casually look into other study abroad programs. I emailed and called countless offices inquiring about the accessibility of the program. Only one program got back to me with a response other than, "You can't participate in this program," and that was Semester at Sea. I learned that many students with mobility impairments and health conditions have successfully traveled on the ship in the past and that the shipboard lifestyle would work well with my limitations. For months I was going back and forth with the decision to apply. On one hand, I knew that it would be the trip of a lifetime and probably the only chance I would get to see some of these places, on the other, my doctors did not think I should go and my parents needed much convincing. I looked up to the later group as the people who got me through the last few years so it was very difficult for me to not just go along with what they suggested. I finally made up my mind that I would go and submitted my application last summer. It was a huge relief that the decision was made and I set about giving myself every opportunity to be successful on the trip.



One of the avenues I pursued to make my health more stable was looking into cutting edge medicine for my conditions. Not long after I applied, new research was released that suggested that most of my more frustrating symptoms could be caused by defects in the veins in my neck. I already knew I had the defect mentioned (formerly called chronic cerebrospinal insufficiency or CCSVI) so I scoured the internet looking for doctors who were treating this. I was lucky enough to find such a doctor almost in my own backyard. I sent him my medical records and he agreed to take me on as a patient. Two days before my 23rd birthday I had the appointment where he told me that the CCSVI could be causing all of my problems (except for the underlying genetic disorder) and that I could see a great improvement in my health if I had the surgery to fix the veins. I of course opted for this experimental treatment and had the surgery within a month on October 14, 2011.


This brings me to today where i can say that the surgery was an enormous success. Within two days after the surgery I was better off than before, even though I was still technically recovering. I have enjoyed spending the last couple of weeks with greatly increased energy levels and ability to remain upright. My wheelchair has been collecting dust unused in the back of my Mom's car. Though I was already committed to making SAS work, this new improvement will allow me even more opportunities. I still am not completely healthy but I have the next three months to continue to improve and am determined to use the adaptability that I have learned from the past four years to successfully travel with SAS.



Just the process to apply and get ready for SAS has been a thrill and a bit stressful. As the trip gets closer and I get more excited, I wish time would speed up and get me on that boat!



Too Long Didn't Read Summary: I got REALLY sick four years ago. I'm healthy enough now that I will have the amazing opportunity to travel the world via Semester At Sea. My health and mobility impairments will provide challenges, but I know that I am ready to take them on.



I also want to thank many people who have made this trip possible. I'll do my best to not make it sound like an acceptance speech...actually I don't think there's any way around that. haha I want to thank my family, especially my parents and brother who have encouraged me to pursue my dreams (once I convinced them that I would be safe). Without them I would not have gotten through this illness, let alone have the confidence and means to travel with SAS. I also want to thank the generous donors who have provided several scholarships that makes this trip possible. I want to thank the wonderful doctors and health care professionals who have treated me and helped me through some pretty rough times (especially Dr. Madej, Dr. Banks, Dr. Brown, Dr. Dake, Dr. Driscoll, Med Stop Urgent Care in San Luis Obispo, and the team at Mayo.) I want to thank the wonderful people who I have met through International Club (and Honors Program) at Cal Poly who inspired me to be a citizen of the world. I want to thank the Cal Poly Disability Resource Center (especially Jennifer) who not only helped me get through school, but also helped me research study abroad options and taught me how to be a strong advocate for myself. I want to thank my professors who went above and beyond with accommodations to help me get through school. Finally, I want to thank my amazing friends, spoonies, and DYNA family for always being a positive influence in my life and cheering me on. Without them I wouldn't be where I am today. (Which is a pretty awesome place, by the way.)