StoryCorps: Sally Manikian

Sally: I’ve always had this wonderful relationship with my Mom. Very close, very nurturing. She always treated us like people, like real people. Yet at the same time she always kept things to herself. I had no idea she had MS. She told me at the beginning of my second year at college. I remember we were sitting at the table in my apartment, it was just me and her. And she, just through another conversational piece, just starts talking about how she has MS. And the way she expressed it it was like, “I have an allergy to peanuts.”

The winter of 2002 she broke her leg. By that spring she started having peripheral neuropathy in her other leg. So after a year and a half of tests and MRIs, and hobbling around the house, my mother was diagnosed with Lou Gehrig’s disease; and then she decided to tell all of us.

Pamela: And what does that mean to all of you? How many siblings – you have three siblings?

Sally: I have three siblings, I’m the oldest of four. What does that mean to me? Everything. At the time it was just overwhelming grief and loss, and the loss of this person. They call it – they being psychologists – call it “pre-grief.” I spent at least two years just engaging what the loss of this person meant. Because also I was young, I was like 22 when I found out. My first year out of college, I’m trying to figure out what I want for my life, and at the same time this huge impact of grief. And also the other thing is, “when is this going to happen?” Is it two years? Is it five years? Is it six years? Is it ten? When is this event going to occur that is going to dramatically alter my life.

I felt like I had this weight of education and experience that I had to change the world with, and live really far away, and do something exotic and work for the government. And then suddenly there’s this intervention of someone, who I love, is dying in this horrible way. And as part of that grieving process I found it really hard to leave. But the cool thing is I went through a lot of those emotions of grief and loss. I’m not saying that I’m over it, because I’m not. But I got a lot of the more mundane grappling the stuff out of the way. It’s still there and it’s still this huge burden and it impacts everything I do, but it’s not as immediate as it was for the first year or two.

My mother’s at the stage where she’s a paraplegic, she can’t get out of bed; she’s on a ventilator; she’s on a feeding tube, she can’t eat anymore. And she was hospitalized about two months ago. So she’s at a stage where, when I’m with her – like on the weekends when there’s no nurse or home care aid – I can spend several hours readjusting her head. There was one morning when I spent six hours just moving her head around, because she was really, really stressed that day.

So, now, it’s harder than ever to be there. So now I find that I have to make myself go because otherwise I won’t. But I really want to because I want to know that I was part of this whole process from beginning to end.