I know I’ve written this phrase in a post before: The Fear Is Always Worse Than The Reality. And it is, but I haven’t been following my own advice. This morning I had to sit in the car a full twenty minutes in front of the neurologist’s office with a full-blown panic attack despite taking an Ativan ahead of time. That’s because for the last five years, I let fear tell me that the future of my brain could only end in one of three ways: MS, Stroke or Alzheimer’s. The fear of those things had become so large in my mind that I stopped going to my favorite brain doc because I did not want to deal with “what might be”.
It also drove me to live my life a certain way, because I was so hooked into the idea that one day in the not-s0-distant future, I would not be able to remember anyone – even those I love the most.
It was the year my oldest son was born, twelve years ago, that I first was diagnosed with White Matter Disease. That was after being misdiagnosed with MS, Lupus and a slew of other maladies. I went to Dr. Maynur Maniar for a second opinion and my world got brighter again. He did his tests and found two lesions on my brain. At that point, I wasn’t presenting any other symptoms, so we watched them. He ordered another MRI after 3 months, then 6 months and eventually up to a year. I was at the point when we were going to go three years in between when I became pregnant with the twins. After they were born, I just never went back.
I had some postpartum depression on top of my regular cycles and it was all I could do to focus on the children. I wasn’t able to think about myself for a long time.
Now, almost a decade later, I am having some new physical issues. I have minimum movement in my right arm and numbness on a couple of my left fingers. My headaches have changed and my relatively new glasses aren’t working correctly. I can’t do my gaming because somehow the movement on the screen is suddenly making me sick to my stomach. I cannot even start on my memory issues.
So, at 8:30 this morning I found myself alone in my car with tears just streaming down my cheeks.
Even though I knew I wasn’t going to get any answers today.
Even though I knew that the fear of the unknown is always worse than whatever the reality will be.
By noon, I am scheduled for several tests: brain EEG, brain MRI with contrast, visual optic nerve and a nerve test for the hand experiencing numbness. He is also pretty sure that we are dealing with Frozen Shoulder in the other arm which means neither are a symptom of MS. In fact, I have no indicators for that to be in my future. What I do have is a referral to an Ortho and urging to begin physical therapy as soon as possible.
I also learned that yes, while people with lesions like mine are at higher risk for stroke and dementia, it is not fated to turn out like that.
I won’t know about the future of my brain for a few more weeks and even then, I will probably have to go back to being monitored.
It would be nice if I let up on myself a bit now though. I don’t have to be so intense or lay everything out on the table all the time because of my fears of a lack of a future. Whatever life holds can come at its own pace without me pushing it forward with force. I can let go of the idea that I have any control of what will be. I can’t make certain things happen because I’m scared of a possible future path. None of it is in my control.
And that’s okay.
xoxo ~ Melissa
*** Edited To Add: I have the results of my MRI. I shared there in The Adderall Journal: Week 1.