I couldn’t write.
I would sit down and try to create something and then suddenly…my fingers stopped. My brain stopped. Whatever I was writing just didn’t make sense.
This happened several times over the last two months. I would sit in front of the computer, or my ipad, and try to come up with something witty, funny, interesting. I would go to work. It would work for maybe about five lines and suddenly, there was nothing.
The last two months have been an up and down of emotions and experiences that I suppose I couldn’t write about them. My views, my ideas, what I wanted to say changed every other day. Sometime they lasted several days. Some emotions lasted longer than I wanted them to.
September was evil. Sure it included our birthdays(mine & the husband’s- a day apart much to the joy of our daughter). However it also included one of the worst depressions or funks I had ever sunk into in history. I can’t even explain WHY it happened. The kids were back in school and usually at this time of year my energy level surges. The opposite of what it usually does in summer. However, I just couldn’t move. Day after day I would take 7 to school and I would come home and just sit on the couch. Usually reading. Or catching up on something I wanted to watch( I became extremely addicted to the show Haven via Netflix. All I have to say is WHY didn’t I start this show earlier!!).
I didn’t want to leave the house. Or shower( I did, I just didn’t want to). I did still manage to pay the bills, grocery shop, help my children with their homework or whatever emotional upheavals they were going through. Nothing here suffered.
Only me. I couldn’t recognize who I was and I pushed everyone away.
The prior months saw the beginning of what has now become my biggest downfall.
A few months ago I wrote about the issues with my eyes. The accident. My fears. My attempts with the medication.
I’ve never been able to talk about my health issues until the last couple of years. For years I swept them under the rug. In fact I pretended they didn’t exist. Yet, now they’re showing their marks in ways that I can no longer ignore them. And for me that’s been heartbreaking. It makes you feel like less then a person when what ails you defines you.
I’m fighting this in more ways then you can imagine.
The pain and exhaustion have kicked in.
The anger. The depression. The anxiety. The feeling of “what did I do to deserve this?”. It’s a constant cycle of wondering.
My eyes aren’t getting better. In fact the other day I may have made a breakthrough into what I think is going on with them. I should know better to self-diagnose but in this case I think I really did nail it. All I know is that when I’m tired or upset my eyes shut down. The muscles droop, they shut down, I get spots and I can neither see nor move. Let alone drive.
And it all came to a denouement with a visit to an attorney.
See, this is hard to admit, no one wants to admit this. Because it makes you feel so much less as a person. Especially an intelligent one. But, my cognitive functions are slipping rapidly. I’ve been noticing it for a while but lately it’s becoming so pronounced I’m scared. And angry. And I cry a whole hell of a lot.
I was the reader. The early reader. The kid who managed to teach themselves how to read when they were 3 because they were jealous their siblings were going to school. I won spelling bees all through elementary school & even junior high. Well second place, I was in sixth grade and the winner was in seventh grade. We beat the eighth graders. So that was a big deal. My reading skills were always several grades ahead of where they should be because I was addicted to words. I still am.
However, with these issues they don’t make sense as they used to. Imagine reading a book and instead of being able to fly through it in a few days it takes you weeks. Why? Because your brain can’t compute the words. You can’t understand, you re-read the same sentences over and over. In fact really intense literature(something you once enjoyed) is no longer something you can handle. It literally makes your brain hurt. You keep trying though. And when you can’t, you feel like a failure. And you cry.
This has been my life the past year. Especially the past few months.
Writing? No. So many thoughts and ideas that should have been given a chance lay deep within my mind. I wish I could continue but I fear the worst.
My dream as a child? To be a writer. It has never left me. This is where I gave it that shot.
I have so many half-written stories it’s ridiculous.
Recently I found a book of poems. Poems that I had written in high school. Some were honestly pretty damn good. Dark, but good. I realized I’ve always been that girl, just in so many different incarnations based on where I should be and what society wanted me to be.
Back to the eyes.
I don’t think they’ll ever be the same. I have days where they droop on one end. Or one sees spots or double vision. It happens whenever I’m upset or stressed, or fatigued. It terrifies me. My biggest fear about this illness coming true. I’ve always been afraid of losing my sight. And with this, I don’t know how soon it may truly happen. And there’s no way of telling people, people close to me- that one day I may not see them. That I may not see my husband or especially my children.
It’s been so many years. I know I’ve been lucky according to the doctor. Symptoms including diagnosis it’s been 23 years before the progression. But at this point I wish it had been the lack of usage of a hand or foot. Not my eyes.
I’m in the midst of fighting for disability. People can look at this and say “well she can write”. Sure, however it’s taken me 2 months to do so. And I’m sad and angry about it. I can’t be who or what I was before these last few months. Life is no longer what it seems to be.
I don’t have any great message in all of this.
I just know that I’m trying to get through this the best I can.
And hopefully once I can get past the next few months of recouping medical records(of which there are many) and dealing with my normal day to day, I can get back to writing.
In a few weeks after some dastardly dental issues are taken care of I should be back on the low dose of the Tecfidera. For a VERY long time.
Until then…my opinions are many. And will resurface hopefully in some way or another here some day.