FINDING THE MISSING PIECES
Where to start? I have often referred to my situation as a medical puzzle, and I simply needed the missing pieces. Like any puzzle you start with the most obvious sections and put them together first. The outside, seems to be the best place to start with the pieces that will frame the bigger picture. Next, moving on to group the pieces or symptoms that stand out the most. Sometimes the puzzle is put together at this point, but very often it is not. At times patients and doctors are content to leave the almost put together puzzle and let it be. It is occasionally all one can do to get back any sort of life and to find inner peace. I have many times over the course of almost 5 years walked away from the puzzle, but something always would draw me back.
I have no problem telling my “functional” story, however, the problem lies on where to start. What seemed like the beginning is maybe more like the middle, but oh how I wish it were the end.
All I ever wanted was a normal life. I guess I should have been more specific when requesting a so-called normal life. What defines normal and, if so, was I ever truly normal? I have found recently I only cough up blood after I have had severe chest pains. You would think that would be a clue for something, anything, but in a world where everything is confirmed by blood tests, MRI’s, and scans -as long as tests are normal, so are you. However, normal is the last word I would use to describe my life.
It is not normal to be walking in a crowd of people and not know how to move out of their way. Apparently, the random days of complete fatigue, muscles down the side of my face-pulling, and full body shaking, again, not normal. Nor was it normal the way my body would contort itself into the most painful twisted positions. I knew my seizures were non-epileptic, but what I didn’t know was I could wake up from an episode and find myself paralyzed from the neck down. Thankfully, the paralysis only lasted a few hours, but took with it my ability to walk for several weeks until I could relearn.
As I over analyze, like I do with most things, I think of the difference between the events in my life and “my story”. I have experienced things that others will fortunately never have to experience, but this story was written for the people who know exactly what I mean.
For example, what It means to live a life of uncertainty. What it means to wave goodbye to the life you had planned with one hand and with the other hand- grasp as tightly as possible to the hope that your life plan will soon become reality once again.
I had a mundane childhood for which now I am very thankful. In high school I was best known as the class clown, yet I was always focused on what I wanted out of life. This crazy medical puzzle, however, was not supposed to show up in my life and turn it upside down. I, like so many, had my life all planned. I knew my life would not be like the MASH game I played as a young girl with my friends. The simple game formed from folding a piece of paper into a design that allowed my friends and I to find out our future with the pick of a number. Listing the ‘coolest’ places in the world where we could live, thinking far and exotic was for sure the best place to raise a family, we would for see our futures. Let’s see… 2,3,4, or 5 kids and deciding who would be the lucky top 4 of the cutest boys in the 4th grade to make the husband list were our biggest worries. No one ever created a spot to list the top 4 illnesses that you may experience in life. I wouldn’t have even known what Functional Neurological Disorder (FND) was in those days. How or why would I even need to know? Of course it’s normal as a young child to have your arm and leg fly up in the air and just sit there, right? The sensation was odd, but as long as it didn’t happen often or hurt there was no reason to complain. The fatigue would come and go throughout my life always given a great excuse of not getting enough sleep, trying to do too much, or isn’t everyone tired? Those were the days and I didn’t know how lucky I had it.
My husband, our children, and I try to pretend like everything is normal; however, it is hard to play the avoidance game when reality is staring you in the face and living in your home. This reality doesn’t look at me though; it fills my veins from my head to my toes. It runs through my body being masked at times by medication. We have no where but God to ask for guidance and I know He answers prayers. My inability to be patient or to accept that we are both working off of a different set of blueprints for my life is a battle I am trying to surrender to.
I will always have questions:
Am I just not accepting my fate?
Will I be here in 5, 10, 20 years still beating my head against a FND wall?
In my journey to find the truth am I avoiding it?
I started FNDHOPE.ORG to help others and as part of my personal journey to look for an answer.
What I am finding, is me.
Some days I like me and some…well, I wish I could leave me and never look back.
As those affected with medically unexplained symptoms know, we all live and go about our lives one minute at a time. Sometimes I am seeing the hope of a new day, the promise of a new research study, and some moments fighting for the strength to make it to the next. I know having FND symptoms is not the hand I wanted, but it was the hand I was dealt. So, each day I awake and I play my cards. I play my cards the best I know how. Some days I can hold my poker face and bluff like a Vegas Pro. Then there are the days I hold my cards close to me so no one can sneak a peak, and I sit back and hide behind the thin air I find sometimes hard to breath. But ever so often when even I least expect it …I lay my, what feels unfairly dealt hand of mismatched neurological symptoms out on the table, and I ‘fold’. I succumb to all the symptoms that I don’t have the energy to hide. I throw my hand out for the world to see.
I try to not let these symptoms define me but to make me stronger. I am somewhat different because I choose to spend my time fighting for a change, patient rights and searching for pieces of my medical puzzle. At the end of the day- I find peace with God and accept that it is what it is.
Illness is not who I am, but it is what I have. My name is Bridget, I am a mother, a wife, a crafter, an activist, founder of FND Hope, and I have a Functional Neurological Disorder.
My story used to end there…. on Oct. 23, 2012 I was officially diagnosed with a neurovascular disorder known as Sneddon’s Syndrome by a Hematologist. I am happy to add the following to my story, and will continue adding for years to come.
I found answers recently in the form of a new diagnosis, which will surely alter the course of my life just as the last one did. Apparently, these mismatched neurological symptoms and a few abnormal blood tests complete my medical puzzle. As I am discovering there are obstacles with any and every medical diagnosis, but with proper treatment I hope to regain my health. After five years, I am ready for a different challenge.
As I embark on what I hope to be a more active life, I plan to pace myself, enjoy my family and yes, of course, plan to change the functional world. I have seen too much to walk away. The loneliness, pain, confusion, and inhumane treatment are just a few reasons I choose to stay and stand up for what I believe is right. I hope as FND Hope moves forward we will encourage others to take a stand and support an illness that hides not only what it is, but who it affects.
Illness is not who I am, but it is what I have. My name is Bridget, I am a mother, a wife, a crafter, an activist, founder of FND Hope, at one point in my life diagnosed with a Functional Neurological Disorder. I am now diagnosed with Sneddon’s Syndrome and I intend to fight for HOPE.