Hellobee

There are several layers to my diagnosis, and I plan to discuss the effects on all three of us.

First though, you need the back story.

I stopped writing all together because my life was overwhelming. First, with the emotional grief of ending foster care. Second, I had plans to open a bakery with a friend that didn’t work out, but taught me a few hard lessons about friendship. Third, my work environment became volatile because of a contentious relationship with a coworker. Fourth, Isaiah potty trained, started school, and was no longer under my constant protection.

Then, I lost my vision.

The next part of this is my personal experience. I am not a medical professional, and this should not be taken as medical advice. It is simply my firsthand experience. Multiple Sclerosis looks different for each person who has it. It is known as a “snowflake” disease, because no two are alike.

In May 2017, I was lost. I desperately wanted out of my work environment. I took every interview I was offered because I wanted out so badly. I needed out. After my third, “I’m sorry, we’ve decided to go a different route,” I was defeated. I felt like everything in my life was out of my control. I didn’t feel good about myself in any way. Immediately, I began trying to fix things and find new ways out. I’ve always felt very in control of my own path (Yes, I am an Enneagram Type 8) so I needed a task and I needed to succeed.

I found a little control and peace by curtailing my overeating and negative attitude. While I had given up my gigantic portions of delicious foods, I did not give up alcohol. And I still think that is the reason why I missed some of my first symptoms.

One morning in September 2017, I woke up missing half of my vision. I have a blind spot that covers the entire right side of my field of vision. When this happened, I was 31 years old. I had gotten myself down to a healthy weight. I had been having some weird vision sparks and what felt like my eyes were a little swollen, but it always happened at night, so I assumed it was because of the amount of alcohol I had been consuming. Which was a lot. And to be fair, when you don’t think something major is wrong, you’re not looking for it.

The morning I woke up with half of my vision, I panicked. My lifelong fear has never been of dying, but of going blind. I didn’t know what was wrong, but I was terrified that I was going blind. Of course, it was a Sunday and a holiday weekend, so I had to contact an on-call ophthalmologist who told me that I could not wait to be seen until the afternoon and I needed to come in immediately. To his office. On a Sunday.

And that’s what we did. My husband drove me to the eye doctor. After the exam the doctor said to me, “Your eyes are healthy, but there is something wrong. A lot of patients come in and think they’re seeing something, but they aren’t. I can tell that you are. I’m worried that you’re having a stroke. Which emergency room do you prefer to use?”

I have experienced cognitive difficulties since my onset, but I will never forget that doctor’s exact words. “You’re having a stroke.” And I will never forget it, because later on, an emergency department doctor would say, “You’ve had a stroke.”

Then came emergency room visits, repeated MRIs, bloodwork, six new doctors, a three day hospital stay, and a lumbar puncture. For a short time, I was unable to walk. I struggled to speak without slurring. I couldn’t use my right hand. I couldn’t stay awake longer than four hours at a time. I couldn’t drive. I couldn’t work. I could barely leave my house.

All while being the mother to a four-year-old. And a very broken, but once extremely capable wife.

As I’ve learned from other traumas I’ve experienced, there is always a distinct beginning, middle, and end.

With a chronic illness, there is no end.

And this was just the beginning.