Both of my heroes had their lives changed by an awful disease, Arnold Chiari Malformation. One has the disease, along with her three daughters. The other hero in my life is affected by her daughter with chiari, me. Both of these wonderful women have shown great amounts of courage through surgeries, trips to the ER, and multiple doctors’ appointments. They have faith that the surgeries are going to be ok and someday there will be a cure. Julie’s perseverance has helped people around the globe. My mother is a single parent and somehow manages to keep a clean house, take care of a beautiful yard and work a full-time job. Oh yeah, I forgot something else she does - takes care of me on the bad days. They have kept things light with humor, always encouraging, and adapting to the changes this disease throws at you.
|Julie and family (kulr8)
Julie Carter is one of the two heroes of my life. Julie is a big reason why I am walking today. When I first met her she was looking at my MRI’s: she saw some things that we didn’t see in the report. She thought getting an appointment at the Chiari Institute was a good idea, since I could not feel my hands and feet. After months of waiting, another chiari advocate got a call concerning her daughter and by mentioning me and how long I have been waiting (six months). Within two days of that call we got an appointment. Julie gave us all the right numbers and paperwork to get free flights, Ronald McDonald House of Long Island, and the right cabbies' numbers. She was amazing through the whole thing. She is our advocate and leader of our support group, and got us to join the ASAP organization. She is an amazing, caring and an insightful person. When I found out I had to have spinal cord surgery she talked to me about what to expect. She herself had the surgery, as well as another girl my age. It made it seem less scary knowing what to expect afterwards from a patient's point of view. She also checked in on me while I was in New York. Her job is more than a full-time, 40-hour-a-week job.
|After mom's surgery (family)
My mother Kellie Oster is my other hero; she is my roommate, as we call each other, and our pad is on the west end of Billings, Montana. She is truly a dear loved one. This woman is the strongest person I know; it seems nothing could ever bring her down. She supports me through my mistakes and when I succeed. When I am sick with my condition, she is the first one there with my medications, a heating pad, and a massage. She has given me my morals, which I stand on, and my faith that will never leave me. My faith and my family are what she taught me is all you need to get through anything. She is there when I can’t get out of bed due to the chiari; that's what keeps me going. She also brings fun and humor to the table when it gets too dull. My mom can say the most outrageous, sarcastic, and hilarious comments when you least expect it. People that hardly know her are so shocked because they think she is this sweet and quiet person when she truly is not. For me, I look up to her because of all of these things and more than I can ever explain.
Both of these strong women have inspired me to learn all that I can about chiari and the associated diseases. Maybe someday I can be an advocate for chiari and the ASAP. The last couple of years of having medical problems and seeing the medical aspect through experiences of going to the support groups and learning about every kind of head trauma there is (almost) makes me passionate about going into the medical field. All the surgeries we have in the group are the most interesting kind. I want to be in those weird types of operating rooms as a surgical technician. I want to be able to read the surgical reports for our group and to interpret them. Both of my heroes have made me realize how passionate I am about my dreams even though they don’t know they have helped. My mom has given me the tools I need for the rest of my life. For me, that is inspiration enough.
In the end, these women are ready for anything that comes their way. My mom will always be in the waiting room, waiting to hear how the surgery went. Julie will always check in on you and want to know what the doctor says, not only for you, but every single chiari patient she knows. Julie is full of wisdom and knowledge to help out many patients. Lastly, my mom will always be there for her family.
Chiari Malformation is defined as an anomaly of the brain. The cerebeller tonsils are elongated and pushed down through the opening at the base of the skull. This causes a flow of serebrospinal fluid (csf) to stop coming into the head. The cranial nerves and low portion of the cerebellum may be stretched or compressed. The functions controlled by these areas may be affected. Malformation can accompany many other diseases such as curvature of the spine, syringomyelia, eds, and myelomeningocele.
Page created on 8/28/2011 12:00:00 AM
Last edited 8/28/2011 12:00:00 AM