You shouldn’t let the little things bother you, but they do.

There’s something that happens when I speak, think and write and I’m not sure there’s even a name for it. Maybe you might know? Some sites call it cognitive dysfunction.

My multiple sclerosis and brain lesions have left me with cognitive issues I never had to deal with before. I’m overly sensitive about them and when they are pointed out (like when I use the wrong word or it comes out jumbled) I’m filled with so much shame and then anger that I often direct it towards the wrong people. I don’t tell people about this, because for me, it makes me feel stupid. It makes me feel less than adequate and beneath my peers. Sometimes it makes me so angry I direct it towards others and say the most terrible things.

I honestly don’t know how to deal with not only the emotions- the feelings of loss, but also the anger and resentment it builds inside me. I just wish it would go away. I wish it didn’t embarrass me as much as it does.

I think part of the issue stems from the fact that I used to have excellent spelling and an even better grasp on vocabulary and grammar. I’m easily jealous at those around me who can use their linguistic superiority where I’m left trying to remember words I once knew. It terrifies me that this is happening, that maybe, soon, I’ll have no grasp of the meaning of any word, that when I speak it will come out slurred and jumbled and my memories will just serve as a source of confusion. When I went back to school the easiest thing would have been to finish a bachelor’s degree in journalism. It would have made sense. But I didn’t. Not because I didn’t want to but mostly because I was terrified that my secrets would be exposed and everyone would know that I’m a fraud. Google and spell check have become my best friends.

But yet, I’m overly sensitive about the whole thing. I get offended when people laugh at my confusion over words. I’m hurt but yet I don’t say anything. To say something would be admitting to my shame. It would show my remorse over the loss of these very precious gifts I once had. Even now, my heart aches in such unimaginable ways. If only, when I spoke, my words could match the true depths of my mind and heart instead of being left to scramble in the ashes of a once intelligent person.

I know I’m not an idiot, but the more and more these cognitive issues become present, the more and more I begin to question it all. Who am I if I no longer have the comfort of my words? What will happen to the poet within me? Will I wither away into the silent recesses of my brain, unable to speak my thoughts clearly but know that they are there somewhere?

I’ve tried to explain it to those I love the best way I can, but I’ve never really expressed how it makes me feel. I’m not sure if they understand. I’m not sure I even understand why it is happening. All I know is I mourn the loss of my words. I mourn the loss of my ability to have a conversation with people without getting confused, without losing my train of thought, without words coming out scrambled or wrong. I miss feeling like I’m adequate. I feel like I’m being left behind.

Here's a link that explains it better than I ever could: Where do the words go, when you can no longer remember?

Shedding a little light on the subject

I wanted to take this opportunity to share with you some images. I'm not an expert on reading MRIs and I'm really not sure what I'm looking for. When I received my first series of MRIs (the old fashioned prints) I really wanted to be able to see what the doctor was talking about. I asked him to point the lesion out to me. Now, this is an MRI image off the disk they gave me the last time (9/10). This is the only lesion I can positively identify because it was my very first.
It is located on my c-spine and it's the bastard that started all my troubles!


I wanted to show you images of the lesions on my brain but I'm really not sure what they look like. I think for the sake of research and to be completely knowledgeable I will have to harass Taft into giving me a play by play. These lesions are the most important for diagnosis. In order to have a confirmed case of multiple sclerosis there has to be lesions present on your brain (the first flare-up only presented an image on my c-spine, but they treated me for MS because if it looks like MS, feels like MS, more than likely you've got MS).

The reason I'm having a hard time recovering from this last flare-up was because of the size of the lesion. I know nothing about how lesions on the thoracic spine presents itself. I can only assume based on my c-spine lesion that it's that giant white mass staring back at me. I can also assume that that's why I'm having such a terrible time with the dreaded MS hug!


When I find out more from Taft at my next appointment (in October) I'll be sure to ask him to explain to me exactly what it is that I'm looking at. I think in order to truly understand this disease you have to be a sponge! You have to absorb as much knowledge as you can in order to truly be able to take a stand against this disease!