Hey guys! I know I’ve posted about all kinds of fun crazy stuff before, but today I want to talk about my sister’s blog & relate it to mine. My sister, Rachel has a blog called doilooksick.com & she has endometriosis and well, that’s usually what she posts about. About how “endo” has effected her life and how she gets passed the rough times “endo” has given her. She usually talks about those things. I had a tumor when I was five-years-old. And I want to share with you how that has changed and still continues to change my life.
After I got out of the hospital, (April 1998, roughly) I had many different things happen. First I returned to kindergarten and I couldn’t read as quickly as I had been able to before my tumor. I also had headaches. I had many treatments for the tumor as well! Today, the tumor continues to cause disabilities for me, though it has been removed. For one thing, it affects my eyes every once in a while. My eyes go out of focus sometimes and I see double vision. Also, my ability to remember recent instructions and notes in class has fogged. My memory of things that happened several years ago is better than that of recent notes taken in class. But, the tumor has brought many good things too! For one thing, it introduced me to the Make A Wish Foundation, who years ago granted my wish to go to Disney World! For another, having had a tumor introduced me to helpful groups and options in college!!! Having had a tumor I was also offered the option of going to a camp for children like me who had had tumors and brain misdemeanors and injuries, called Camp Feliz.
When I returned to school, all my friends were so happy to see me. But I wasn’t able to read very fast in school anymore. My friends helped me out there, as did my teachers!!! My kindergarten teacher, Mrs. Raiden was very patient and understanding with me, which was exactly what I needed!!!! She helped me through projects and such to understand reading and math! My teachers today, help me out by understanding my disabilities and accomodations needed!
Several years after my tumor, a new issue appeared. It had never happened before about 7 years ago when my eye wandered uncontrolably. I knew because when it did, I would see in double vision. I would close my eye & attempt to continue reading as I had been before. We did get the eye worked on though it didn’t completely fix the issue. The work we had done on my eye improved it so my eye didn’t wander 5 or 6 times a day, but more like once or twice a week. And it still does. I’m not certain that that was due to the tumor years ago, but I tend to blame it anyway.
Another interesting thing about the tumor was that the day I got the tumor in kindergarten was the first time I had ever had a head ache. Of course, I have had other headaches since then. I joke that they’re all due to the tumor that started them all!!!
The tumor caused the need for me to get quite a few different types of treatments too. I had to get x-rays, M.R.I.s, CT scans, radiation treatments,& shots. Though the M.R.I.s & X-rays required me to lay still & get IVs, the shots I had to get were probably the worst. The shot I had to get was origionally once a month & how often they were decreased over the years. The shot hurt like crazy!! I usually chose to have them do the shot in the thigh at the beginning (as prefered to the buttock) but later switched to not be able to see it as they gave the shot. Honestly, that eased the pain a bit. After that, I would strongly prefer the M.R.Is and x-rays!!!
However,these treatments were all very challenging for me as a little girl. The M.R.Is have highly improved now! Now when I get M.R.Is they can play movies in the mirror of the M.R.I machine and put headphones on me so I can hear it over the loud noises the gadget makes!!! When I was little, they had to take me out of the magnetic camera to tell me I was wriggling too much, or that they were going to continue to the next picture. And I just had to lay there under the blanket doing nothing. Often times, my best option was to try to fall asleep. When I was little, I had to get CT scans and all kinds of other treaments that I honestly don’t remember much of, but children will have a tough time with these.
Though my tumor was 16 years ago, I still have problems today. I have disabilities that make college even more challenging than you could imagine. For one thing, scantrons are a bother to me. I can’t stand them. But I’ve learned to bubble them in! Another problem is I can’t work in a room with people talking. I have to test in a silent room! Also, I can’t finish a test as fast as other students can. I need extra time. And for some classes I even need extra help with other things. Particularly, math.
My ability to remember recent things said in class and such is not half as good as it was before the tumor. In fact I remember addition and subtraction learned in 1st and 2nd grade better than things my professors said yesterday. Honestly, that disability has gotten in the way alot. The day of a test a teacher told me “remember we learned how to do this yesterday?” Honestly, no I can’t remember. It sounds familiar, but I don’t remember.
Though these things all have gotten in the way at different times, the way I prefer to look at it all is how it has improved my life! There are good things that the experience has brought!!! The up sides to all of this hullabaloo would have to include the day Make-A-Wish came to me after we had left the hospital and told me they could grant me a wish!!! They told me I could have a while to think about what my wish was, but I already knew exactly what my wish was, I wanted to go to Disney World!!! Many of my friends and relatives had gone before and I had heard so much about how amazing it was!!! Now, it was my turn! I told Charise, the lady who had offered to grant my wish and we set up a count down to the day my family and I would go to Disney World, Florida! For the count down, we made a paper chain with the number of links that was the number of days until we’d go!!! We set up a big calendar that we would cross off days until then as well! Months later our trip came and it was all I had imagined! The Make A Wish company set it up so that we got to get in front of all the lines and I was treated like a princess!!!
Another bonus to having had a tumor is that it introduced me to helpful options in college & groups of people there that are there to help me! There was the Disability Service, who conveniently offered and still offers assistance for me in my courses and also got my schedule made before the councelors could! There was a shorter wait there. Then there was also the tutoring center, who guided my work. But more than that was the Access One to One lab, which is part of the tutoring center that provides you a personal tutor for a particular subject and particular time period. I still use them today! These are all wonderful things I may not have found out about if not for my tumor!
Having had a tumor I was also offered the option of going to a camp for children like me who had had brain tumors, cancers, and brain misdemeanors and injuries. This was Camp Feliz! A fun weekend-long camp where I met several new friends who had been through tough times similar to ones that I had gone through! I met friends, baked, ate, crafted, and played games there and it was a lot of fun!!!! There are cabins there that kids are put in and in those groups, you grow close to & learn about your roomies!!! Therefore, Camp Feliz was yet another wonderful thing I stumbled upon in my troubles!!!
Having had a tumor has changed my life in several ways both positive and negative, but not having to get shots anymore has opened my eyes to the benefits it gave me and I know that more are on the way! Be sure to visit Rachel’s blog: http://doilooksick.com/ for more on invisible illness!