It’s so true! You really can get by with a little help from friends.
At least I do, everyday. And I didn’t find this group the way most would think or even imagine…
This group given to inspire, support, encourage. With this blog post it’s “My FIRST Attempt” at inviting you into to “my world” of Chiari.
You know the phrase “life hands you lemons and you make lemonade”?
Well this story begins and never really ends. And I didn’t really see it coming or start out the way I thought any good story should begin?? I certainly didn’t think going to a new city in the middle of the cornfields would ever give me so much! At least I didn’t see it that way.
In the summer of 2006 I was told by a neurosurgeon, Dr. Arnold Menezes I would need brain surgery for Chairi Malformation. I never told anyone any of this til a couple of years ago. I never admitted how scared I was. As I sit back and reflect on those months I do remember how scared I was, I never showed it until the morning of the surgery, but all the fears of what could have happened consistently ran through my head. My family never admitted how scared they were. In fact I never once saw any worry on my parent’s faces. My mother tends to take on things with a smile anyway so how would I had known what kind of year I was about to face. Mom just reminded me I was going to where they filmed the movie about Shoeless Joe Jackson.
But “fast forward” to the night before the surgery and even years later I have gained so many friendships and have been connected with some many people with Chiari Malformation through this journey. I had no idea even how to spell it much less tell people what it was. My diagnosis was “Brainstem Kink”. What the heck?
Connections.
My first connection was the night before my surgery when I was in the Ronald McDonald House in Iowa City, Iowa I met a little boy who at the time was I think around 7 years-old we talked and he explained how he was having the same surgery as me but just a couple days later. How this 7 year old could explain what an Arnold Chiari diagnosis was truly astonishing. Benjy is now a high school graduate and like me has grown from the experience and has become a better person. I’m so proud of him.
The next connection is with the Vercher family. Dr. Menezes and his office reached out to my mom and I to see if we would talk to the family as the mother and daughter would need to have the surgery as well. I of course said yes because without Dr. Menezes and his staff I have no idea what my quality of life would be like. Katelyn and her mom Leann are now dear friends who I still keep in contact with to this day. In fact with me being an LSU fan and them living in Louisiana I’m pretty sure that helped solidify our friendship even more behind the medical story. Through the Vercher’s we met another family the Walkers where Christian and Melissa both deal with Chiari. When dealing with a medical crisis it’s easier to find another common element, like sports!
Another connection that Dr. Menezes and his office set up with me was a girl from Oregon. Who would have thought I would ever be great friends with someone clear across the country much less from Oregon (other than the Duck) being from Kentucky and never have been west of Texas.
The most recent connection Dr. Menezes and his office staff sent to me was a girl from Michigan. Colleen has become one of my closest friends and we both agree that Dr. Menezes knew what he was doing when he had us start talking to each other because we both have a love for college football. To be honest I don’t think you could meet many girls like us who have a love for the game.
Fast forward to my 10 year milestone, where my mom and I had the privilege to venture back out to Iowa to celebrate Dr. Menezes getting his endowment chair where I got to meet five other girls who have become lifelong friends. Never in a million years had I had so much fun with a group of people who inspire each other. Total strangers? Life is better with friends.
So reading this you may be thinking does Chiari only affect girls because you have only mentioned two boys in your whole story. Believe me when I went out to Iowa for the endowment chair ceremony and reception I was thinking the same thing because all I had met were girls, with the exception of Benjy and Christian.
According to the National Institute of Health website :
In the past, it was estimated that the condition occurs in about one in every 1,000 births. However, the increased use of diagnostic imaging has shown that Chiari malformation may be much more common. Complicating this estimation is the fact that some children who are born with this condition may never develop symptoms or show symptoms only in adolescence or adulthood. Chiari malformations occur more often in women than in men and Type II malformations are more prevalent in certain groups, including people of Celtic descent.
Fast forward about a year and a half after the endowment ceremony I made my most recent connection through a girl I met on instagram. Yes, you read that right social media connected me to someone else with Chairi Malformation.
Ever since I’ve had an Instagram I’ve posted on the anniversary of my surgery with the hash tags I used I decided to search the hash tag and happened upon an account that was dedicated to bring awareness to Chiari. Elizabeth has her own battle with Chairi and has become a great friend!
I’ve had the benefit of meeting such great people that have become friends and even family through my medical journeys whether it is heart related through Camp BraveHearts or Chiari related through Dr. Menezes and Instagram.
I am very grateful for all the connections I have made because you may see me as a strong person because of all that I’ve been through, but I wouldn’t be as strong if it wasn’t for the support system that I have.
For more information about Chiari Malformation:
https://rarediseases.org/rare-diseases/chiari-malformations/
So Southern At Heart 