Me: Do you remember anything from when you were in the coma? Did anything in last week’s story sound familiar to you?
Erin: No, not at all. Everybody who did come in and talk to me, they’ve told me things they said to me. They’d come in and talk to me like I was not in the coma, basically. I don’t remember one bit of it.
Readers—if you haven’t read last week’s post yet… STOP!…you need to read that first, then come back… this post is a continuation of that story.
Me: How does it feel, reading the account of what happened to you from my perspective?
Erin: It’s very surreal. I was in a continuous state of a grand mal seizure, so my brain was just being fried for 2.5 months. That’s why my memory is so affected.
A few months after Erin went into the coma, she “woke up,” but it wasn’t the dramatic waking you see in soap operas or movies. It was very gradual. For days, she could only move her eyes, then her lips. It was weeks before she could talk. I remember when she was first able to open her eyes, though. I immediately thought of the books I had read: The Diving Bell and the Butterfly and The Count of Monte Cristo. I showed up at the hospital with sheet of paper containing the alphabet, and a mission to help her communicate. I explain this all to Erin in our interview.
Me: Do you remember that at all?
Erin: I do not, no. The only thing I remember from when I first woke up is that I called my boyfriend, Steve, by my first boyfriend’s name. I looked over at him and I was like “Louie?”
NOTE: This is the first thing Erin remembers, but this actually happened several weeks after she woke up, once she was able to talk.
Me: I remember that you were asking for Louie for awhile, and none of us knew who that was.
Erin: I think the only person that knew was my grandma because, I don’t know, he was the first love of my life. He and his girlfriend actually came to visit me, and I told him that and they just laughed.
When I came in with my mission to communicate to Erin, it was much more difficult than I had anticipated. I was pretty sure it wasn’t working, or that Erin had no interest in it. I’d point to letters and try to have her blink when I got to the right letter, but nothing was coming together at first. I hadn’t taken into consideration that she might have difficulty remembering how things are spelled or what words to use for certain things, that she might forget what I had asked her in the middle of her answer, or that her eyes might get dry and need to blink at the wrong time. I felt like I was asking too much of her, but when I asked if she wanted me to stop, she indicated that she wanted to keep trying. In the time I was there, we did manage to exchange a few sentences, and I gathered from our conversation that 1) she remembered me, 2) she was TOTALLY still in there and 3) she hadn’t lost her wit… or as Erin puts it: “You can put me in a coma, but you can never take the sarcasm out of me.”
Me: How long were you in the hospital and what do you remember about that recovery time, between the time you woke up and the time you were released from the hospital?
Erin: I don’t remember much of the hospital. I remember meeting a lot of doctors. Steve was the one who mostly did all the talking and keeping the information that we needed to keep. And then I’m not sure how long I was in there. My grandma would remember.
Me: You are still recovering, now. What sort of struggles do you face in recovery on a daily basis?
Erin: Every day is different. Most mornings, when I wake up, I don’t know where I am. It takes me a minute to know where I am, basically. And then when I figure out where I am, it’s like, do I want to get out of bed today, do my ritual? Or do I just want to stay here. But the hardest thing for me is just not being able to walk or drive, see my friends.
At this point Grandma Barb walks in the room. Barb has raised Erin like her own child, and she is now the one taking care of Erin. They live way out in the country, in Grandma Barb’s home, where I conducted the interview last weekend. We all sat at the dining room table, full from a wonderful meal prepared by Barb: lemon-pepper chicken, macaroni and cheese, asparagus, bread, and coconut cake.
Erin (to Barb): How long was I in the hospital for?
Barb: Four and a half months.
Me: And then the nursing home?
Barb: And then the nursing home for six months.
Me: Okay, so almost a year. (to Erin) What has been the most difficult part of this whole thing, physically and emotionally?
Erin: Physically, basically that I can’t walk.
Me: And you still have seizures, right?
Erin: Actually, since I’ve been taken off of Phenobarbital, which was actually causing seizures, I’ve actually only had like one or two, and that’s when was I was sick, I had the stomach flu.
Me: That’s really good! Last time I talked to you, you were having a lot of seizures still.
Erin: I was having them like every other day, but they took me off of Phenobarbital and they just stopped. But, basically the hardest things have been my relationship ending, not having my daughter full time, and not being able to use my feet… or my legs period.
Me: I remember meeting one of your doctors on a visit to see you. He said you were a miracle patient. Do you think you were?
Erin: I mean I can’t say if I was a miracle or not, but doctors did say that it blew their minds that I woke up.
Barb: You are a miracle. It WAS a miracle.
Erin: I just feel cocky saying stuff like that, you know?
Me: Has this changed your outlook on life?
Erin: Absolutely. I don’t take things for granted. I try to help people like people have helped me. Before I would have just gone about my business, and get to myself. Definitely has changed life completely.
Me: Do they have any idea what actually happened to you? Is there a diagnosis yet?
Erin: The closest thing that they came to is that I had just the regular flu and they think that it affected my brain somehow.
Barb: The virus attacked her brain and that’s the only conclusion that we’ve heard so far. They ruled out everything else.
Erin: Nobody’s sure.
Me: Is there anything else either of you want to share?
Erin: All I have to say is just enjoy every day, love every one you can. Don’t take anything for granted.
Barb: It’s been tough on her, it’s really been hard. Some days—
Erin: like yesterday—
Barb: yeah, well some days she doesn’t remember yesterday.
Erin: Yesterday I didn’t get out of bed all day except to use the restroom. Just because, I don’t know, I wasn’t feeling good about life.
Barb: She has depression frequently.
Erin: I do. Because I’ve lost everything.
Barb: Except the most important, that you haven’t realized yet— your life.
Erin: I have realized that, but I feel like it’s been more of a hassle for everyone and myself.
Me: Please don’t ever say that.
Erin: I’m sorry. Sometimes… I’m just being honest…some days that’s how I feel. And I’m seeing a psychologist for that, just to talk out the things that I don’t feel like I can talk to other people about. And that’s been very hard for me because I don’t like to open up to people and be completely honest. It’s not that I’m not being honest, I just keep it to myself.
Barb: My observation is that she feels like she’s a burden.
Erin: Yes, that’s precisely it.
Barb: And she’s not. I mean, she tells me that every day, but I keep trying to tell her it’s a labor of love on my part.
Me (to Erin): If you hadn’t survived, that would be the biggest emotional burden on all of us.
Barb: Exactly. I don’t think I can lose another child.
Me: Physical burden is nothing… emotional burden, the feeling like you lost somebody…that’s different.
Barb: Don’t forget that one!
Erin: I won’t.
I want to thank Erin and Barb for taking the time to share their story with us. Erin is an inspiration to me, and I imagine she has been one to everyone reading this.