Journeying Together
How does one begin one’s story? A story that spans decades yet seemingly only started a few years ago? A story with so many alphabet soup diagnoses that it confuses even medical personnel? A story that exposes vulnerabilities and rubs salt in wounds that are still raw? How does one convey the emotions? Where does one find the words?…
Several years ago my life was turned upside down when I was diagnosed with a Traumatic Brain Injury. I was equal parts relieved to finally have an answer to symptoms that had been plaguing me for years and yet terrified at the three little letters, T.B.I. At the time I didn’t realize that it was the start of a journey that I will be on for the rest of my life.
Within the two years following my TBI diagnosis I kept getting hit with one life-altering disease after another. Hypermobile Ehlers-Danlos Syndrome. Postural Orthostatic Tachycardia Syndrome. Mast Cell Activation Syndrome. Cervical Dystonia. As I accrued the diagnoses my body continued to fall apart. Symptoms that had been tolerable before became unbearable. Migraines. Joint pain. Fibromyalgia. Subluxations. Palpitations. Air hunger episodes. Depression. Restless Leg Syndrome. Mood swings. Insomnia. Extreme fatigue. GI issues. Dizziness. Memory recall problems. Brain fog. Loss of balance. Whiplash syndrome. Tinnitus. Food intolerances. Vision issues. Pre-syncope. The list went on and on. When I was supposed to be in the prime of my life, playing with my kids, going on dates with my husband, I could barely get out of bed. At the age of 33 I essentially had the body of someone twice my age. I quickly learned that there aren’t any cures for my diagnoses, just management therapies. I soon realized I was a hostage to my own body. What does one do with that sort of knowledge? What does one do when faced with that sort of future?
As I slowly began to come to terms with my new normal and started to open up to those around me about my health issues, I discovered something surprising. I found that people began to be encouraged by my story. Sometimes they were encouraged by my vulnerability. Sometimes they were encouraged by laughing along with me at my sarcasm and dark sense of humor. Sometimes they were encouraged by my willingness to educate and advocate. It didn’t matter how similar or dissimilar their stories were to mine, my journey somehow encouraged them. Whether they too had gone through a similar health crisis or not. Whether they too understood the loss of dreams or not. Whether they too faced an uncertain future that they had to take day-by-day or not. As I somehow encouraged them they, in turn, encouraged me. My burden began to feel a little less heavy. My passion to educate and help others with these unknown diseases began to blossom. I began to dream again.
Over the months and years of encouraging those close people around me the dream has grown. It has grown into a desire to reach others not just in my small sphere of influence, but outside it as well. It has grown into a wish to educate others about my diseases, many that people have never heard of before. It has grown into wanting to encourage fellow chronic illness warriors walking along their own paths and letting them know they aren’t alone. It has grown into a hope that sharing my own roller coaster journey may someday help another fellow zebra get diagnosed that much quicker. It has grown into this – me inviting you to walk alongside me as I navigate this new path into my future.
I invite you to come learn about this road I’m on.
Will you journey together with me?
