hear what I mean, not what I say

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When you hear those words, what do you think? Well, from someone who is ‘older’ and has MS, what we mean and what we say are two different things. I could chalk this up to just being 55, I’m sure. Anyone born in the 60s or before could relate. When you have MS, forgetting words is a daily occurrence all by itself. Forget about being old. So, hear what I Mean and not what I SAY….

Recently I was driving home, talking on the phone via the link to my car (I am sure there is a name for that, but I can’t remember what it is). I was trying to explain to my husband where I was. I told him I was on highway 9, taking the “100th-street exit.” Now, understand, he drives for a living. He knows cross streets and such in all sorts of places. He very calmly says to me, “Hon, I have no idea where you are.” At this point, I become very frustrated. I reiterate what I said before.

He still has no idea what I’m talking about. Then he says, “do you mean you’re on highway 2?” “YES!!!!!! that’s what I said!” Then he says I had told him highway 9. “Okay! Whatever, 9, 2, same difference. You’re supposed to know what I mean!” Just one example.

Sometimes I just don’t have the words to say. Word finding problems are real. I know that as we age, this can also become an issue, but with MS, the issues are ten-fold. Some of you may remember your mom or grandmother go through a list of your sibling’s or cousin’s names while trying to yell something at you. I do this with everything. Apples, cars, patients at work, colleagues, dogs, vacuum cleaners, cats, sisters and kids. It’s not fun. Anger breaks in every once in awhile when I can’t remember. Then I have to just breathe through it (when I remember to).

I have been on a newer medicine called Ocrevus, for about 2 years. I have not had any relapses to speak of, and this medicine, which I receive in a 6-hour infusion every 6 months, is supposed to not let me get worse. So far, so good. At the end of the 6 months, when it’s time for another infusion, I was told the medicine is no longer working, per se. I do notice I feel better, right after all this. My memory seems better, my walking is better and overall, its okay I think. I would be interested to know if others taking this medicine feel the same or have other experiences.

When my mom was here, before she passed 9 months ago, I would call her before I had the infusion and afterward. She always offered to go with me, but realistically, there is no reason for someone to go and sit there for 6 hours or more, while I receive this medication. Perhaps I just can’t allow someone to give up so much of their time for me. Maybe I just would rather do it alone, proving to myself I can handle this wicked disease.

I don’t know. But she isn’t here and I miss the phone calls desperately, when I could hear her sweet voice. Now, I talk to her anyway; I just can’t hear her on the phone. In my heart I know she’s with me and I feel reassured I’ll be just fine in the end. I can hear what she means. Ironically, she is with me now always when I go to get Ocrevus.

How lucky am I to have had such great love in my life, that it hurts so much to say goodbye.