This, right now, is the only life I know

Interacting casually with Kelli Smith, you might never guess that the 43-year-old mother of two sons had a stroke nine years ago. Talking to her, she is bubbly and engaging, never at a loss for words, until suddenly in the middle of a great story, full of humor and insight, she says, “I don’t know where I was going with that, but it had a good point, I promise it did.”

Kelli’s stroke was the result of an artery dissection during chiropractic manipulation. The stroke affected her left hemisphere and brainstem. The major consequences of this were nystagmus, a slight rotation outward of both eyes, and profound memory loss. When she awoke from six and half hours of neurosurgery, Kelli had no memory of the prior 34 years of her life. She did not recognize her husband, her children or her parents. “I forgot the first nine years of my marriage,” she said.

Not only had her long-term memory vanished, her short-term memory had, too. She tries to compensate by writing things down — “I have Post-its® all over my house,” she said. “But when I read them later, I wonder, ‘What was that about?’ So, they don’t really help.”

Part of her therapy was writing down the events of her day in a notebook and then reading it later. Her experience was always the same: “I didn’t remember any of it. I was like ‘Who wrote all of this stuff down?’ It meant nothing to me.”

Even with her children, she says “out of sight is out of mind.” Her older son, Kenny, is living and working in Florida, and when she meets him at the airport, “It feels like I’m his aunt, somebody I’m not really connected to,” she said. Her younger son, Johnny, lives closer with his father and visits more often, so she feels more connected but still doesn’t recall or follow events in his life.

“For me, this morning feels like three weeks ago,” Kelli said. “The last birthday I had, I was 34. Every other birthday is just a random date. Maybe tomorrow, I’ll be 58. I don’t know. Memories don’t stick with me long.”

This loss of memory has a big impact on relationships. “You feel very alone because you understand that all these people know you, and they know stuff about you that you don’t know because you can’t really pinpoint why exactly you are friends.”

She illustrates this further by way of her family: “There was a time when my mom was just not a happy person, and I did not like her because I did not understand why she was not happy. I didn’t know the history or the health history so I could not really understand. I only saw what I saw then and I made my opinion based on that, and I hurt some feelings.”

When she hears other survivors talking about their lives before stroke, she is a little envious, even though she recognizes their sadness at what they have lost. “I don’t have those memories so life is happier for me because I can only look forward,” she said. “But it makes me sad I have no memory of even being pregnant with my children, no memory of my children being young, no memory of me being young. I have a twin in North Carolina, and I feel very connected to her, but I don’t remember any of the events she tells me about. My parents and my ex-husband both made me photo albums to try to help me remember things. I can name each child but I couldn’t tell you where it was, how old they were. I have no idea. I can only guess. That is heartbreaking.”

After her divorce, Kelli lived with her parents for a year. She lives independently now, but within half a mile of them at their request. They look out for her and communicate every day. She drives, but it is a community where she has lived most of her life and she knows how to get home from almost anywhere, “and I use GPS religiously.”

Kelli has had surgery for the nystagmus, but her eyes are still affected. The lights in most stores are irritating, so she shops online. “When they bring the delivery, it’s like opening packages at Christmas because I never know what I’m going to get,” she said. “I have impulse problems so I will suddenly decide I need a stove, and I’ll buy a stove. I don’t need it but that thought came into my head so I need to do it right now. I try to talk to my parents before buying things, and they make sure everything is good.”

There are certain routines that she has mastered or found compensatory tools for.

“It’s weird because I know some things but I don’t know others,” she said. “Like I know that bills have to get paid. When my Social Security check gets deposited, in my checkbook I have a list of every bill that is going to get paid this month. When I open my bank account, I can write every check. If I don’t have the physical bill in front of me, I pay what I paid last month, and they notify me by email if I underpaid or overpaid. I have my phone set for the date that I should receive my check; I also have that date circled on my calendar. Doing that for years, it kind of builds a routine. There are things through repetition that I say that ‘the person inside me holds on to.’ There are certain things I just know how to do, but I don’t remember how I did them.”

Kelli experiences the passage of time differently, her present is everlasting: “It’s like this morning happened three weeks ago to me, and I’ve just been sitting where I’ve been sitting for three weeks. I was sitting right here and my life started. That’s how it is a lot of the time. If I go to my parents for dinner, I live there. I cannot picture myself anywhere else. Then when I come back to my place, this is where I live, and I can’t picture me being anywhere else.”

It is hard to ask someone who can’t remember her life how something felt years ago, but this was her answer to the following question: How did it feel when you found out you couldn’t remember your life?

“I felt very scared, but not in your typical sense. My fear was ‘Oh, my god, I am X years old, and I don’t remember how I got here and my life is going to be over soon.’ I was scared that I don’t recall how I got to be the person I am now and I don’t have much time left. Because I can’t look into the future, I can’t plan for anything because I don’t know what’s going to happen day by day. When did I have this feeling? I don’t know, I just always felt that. I always feel scared like my life is partway over. It’s not fun, not fun at all.”

In an hour-long interview, that was the only mention of fear, and even it was delivered with a cheery inflection. And then she said this: “When I found out that most of the people that have my kind of stroke die, I learned to appreciate stuff better. Seriously, I started to follow Buddhism, and follow the path of ‘live in the now.’ I can’t look back to see what was. This, right now, is the only life I know. So, I’m going to make it a good life, darn it. I’m lucky, I got a second chance. True, it’s not perfect, but it’s a good one for me.”

See also: 

Memory: It's Complicated and our helpful infographic Is My Memory Loss a Masquerade? 

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