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Killer Disease on Campus

Amy's Story

 

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Amy Mansell is an inspiration. At age 17, she barely survived a debilitating bout of meningococcal sepsis, the most dangerous form of meningitis. Doctors at St. Mary's Hospital in London—and her own inner strength and buoyancy of spirit—pulled her through, though at a terrible cost: the loss of both her legs below the knee and parts of her hands. As Amy reveals in the following adaptation from an interview with Jeremy Llewellyn-Jones, she now has a new lease on life, and she has insightful and touchingly candid thoughts on her experience to share—thoughts that may help similarly afflicted teenagers secure their own new lease.


Falling Ill

Amy recalls first getting sick.

One day I started to feel aches in my back, my neck, my shoulders and arms. I thought nothing of it, so I went to bed that night. I woke up the next morning, and I was sick. I could walk but I found it hard. I went back to bed, and it's like I was passing out but I kept waking up and hearing myself speaking. It was really weird. I was saying the most stupid things!

It began to get worse. It was getting harder for me to walk, and I was in a daze. I wasn't relating to much; I wasn't responding really. I then went out with my boyfriend, David, because he didn't want to leave me there. Before I went out—it was about five o'clock in the morning—I'd phoned my mum, and I was just crying on the phone, saying, "Mum, my back aches." She told me to go to the doctor's as soon as I could.

I decided to go up to the hospital because I thought I'd get seen quicker. It was coming towards one o'clock in the afternoon, and as I sat there I began passing out. I was sitting in a wheelchair, luckily enough, but I was passing out. A nurse called my name, and I had to call her over to help me walk at this stage. She helped me get to a room.

Then the doctor saw me. I can remember vaguely showing him a small rash that had appeared on my tummy. I showed him the rash thinking to myself it was heat rash. Sure enough, he just looked at it and said, "You've got heat rash, you've got the flu, go home." He didn't bother pressing on the rash to see if it would disappear. I then walked out—well, tried walking out. I had to have the aid of my boyfriend to actually help me walk. Apparently I went out again in the car. I don't remember anything of that.

Next thing I knew I was back at [the town of] Whitstable, where I was living with my boyfriend, and then I was getting sick, I was passing out. I don't think I was able to walk at all then. The ambulance driver [whom David had called] actually had to lift me into a stretcher. I remember looking down at my feet, and they just dragged on the floor. I got in the ambulance and was rushed to Kent and Canterbury Hospital [in Canterbury, England]. They took me into this white room—it was really bright—and they began putting fluids into me.

My boyfriend came in with my mum and dad. By the time they turned up, it looked like I'd been poked with a fork all over my body. I was coming up in a red rash completely. David, who stood there holding my hand, just looked—well, I can't explain what his face looked like. My mum was standing behind me, and she stroked my head and told me to go to sleep. The next moment I woke up, I was here in St. Mary's.


Awakening

Amy describes how she felt when she woke up from several weeks in a coma.

My hands I just couldn't stop staring at. The minute I woke up I looked at my hands, and I was thinking, What have I done? What's gone wrong? I obviously thought I'd burnt my hands, because they were just pitch black, especially my right hand. My mum had prepared herself for me waking up and to be strong for me, because at that point I wasn't that strong.

The nurses thought that I wasn't coming to terms with [the fact that I was going to lose] my legs and part of my hands, until I started getting a bit frustrated about being in bed, not being able to get out and walk. (And I couldn't eat. When I first woke up, I had all these tubes coming out of me, including a breathing tube and a feeding tube.)

I think losing them made me think, Oh yeah, I am getting better. But I did see a counselor about the way I would look, because I thought, I can't live a normal life like I used to. I had come to terms with the fact that I would lose my legs, but I needed quite a bit of explaining. I mean, things had to be explained to me in ways I'd understand—that it wasn't the end of the world and I was going to live.

Then it came to the point where I actually realized that I was seriously ill. Photos were taken of my legs and my hands whilst I was asleep, and seeing those pictures of my legs made me realize that they did have to go. I did have a bit of help from a girl called Lucy, who came in six weeks before me and like me had lost fingers and limbs.

Most of the time I was fine, though. Well, not fine, but I wasn't, you know, screaming the place down. In fact, I was quite perky in intensive care.

It surprised me that I was perky, because I was petrified of hospitals, literally petrified. Coming down with meningitis makes you think of life in a different way, though. You have to take every day as it comes. The way I think about it is, there is somebody that's worse off than you are. Also, the help that I've had from relations, friends, and nurses really helped me a lot. I've grown quite attached to some nurses in intensive care, I must admit.


Coping

Amy talks about how her parents, brother, and she herself handled things during her illness.

I remember seeing the family being able to put a brave face on in front of me, not to break down and cry, because really I was the one that was crying. They were really strong, to hold back and say, "Amy, you are going to get through this." They did help me get through it, because I think I would have given up. I did have times when I just wanted to be left alone. I wanted to go home and see my bedroom again, and seeing my mum and stepdad and brother and everyone going back home without me made me cry and say "I want to come," because I did miss them a lot.

My brother was affected by it very badly, because he had cases in his school. I don't know what strains those kids had, but sadly they didn't make it. My brother thought that was going to happen to me. He got to where he just couldn't come in the room with me until I was actually showing signs that I was getting better.

It was such a relief to get rid of my hands, because they were causing a bit of pressure. It was nice to have my normal-color hands back as well. I mean, they weren't operated on until I was on the ward, like a couple of weeks before I went home. I think my hands were the last thing operated on. They had to be taken away.

I didn't worry about the operation on my hands. I quite liked the idea of going to sleep actually; it was quite nice to go to sleep. By that time I was becoming a braver person. I was petrified at first, but because I had quite a lot of tests and I was seen quite a lot by doctors, physios, consultants, and all, I did become quite brave. I'm not afraid of hospitals now, not after having that.


Moving On

Amy tells of the aftermath of her illness.

I've lost the middle finger and ring finger on my right hand. I've got a small digit of my thumb, which is going to be extended so I could have like a little crane grip. I've lost the tips on my left hand, which isn't too bad. I can use it quite well still. I've got a bit of a thumbnail. The only finger I've got left is my little finger, which is perfect; there is nothing wrong with that. I've lost my legs. Not in total, only about ten inches, I think, including the feet. And it's below the knee, which is good because I've still got my knee joint.

In terms of internal things, my kidneys. I do worry about the kidneys, but I'm not going to worry too much about them, because losing legs and fingers was quite emotional. That's more emotional, I think. But I'm looking forward to having a kidney, because I'll be able to miss dialysis, which is pretty boring.

It'll be nice because then that will mean that I've got my life—not like I used to have but it's going to be similar. I'll be able to go to work. I'll be able to do what I want instead of saying, "Oh, but I've got dialysis that day."

It's exciting for me at the moment [to learn how to walk again], because I've only just got my legs. But it's something that you've got to put your mind to and want to do. You've got to be pretty determined, because it's going to be hard work. I'm still trying to get the coordination right, to get in the habit of walking again. It's been quite a long time since I last walked.

I've also had to get my brain used to knowing that I haven't got feet. [After I lost my legs] I suffered from phantom pains, which were pains that I used to have when I had feet. You've got to get your brain to say, "Look, I've got artificial feet, and I've got to move these feet." [For more on phantom-limb pain, see From Ramachandran's Notebook.]


Understanding

Amy explains some of the intangible aspects of her experience.

I thought meningitis was a bug that just killed you. I didn't know that you ached like that. I didn't know you got black spots. I didn't know that you could lose limbs. I just had no idea. It didn't even go through my mind when I was ill. I think I was just too drowsy to even worry. I am known to be a worrier, but I didn't worry at all that day. I worried a little bit, but I didn't think, Am I going to die?

I still can't come to terms with the fact that that was me that nearly died. I just can't believe that I was that ill, because really all I remember is getting better. I don't remember being stabilized or having problems being stabilized. I just can't believe that was me. They didn't give up, but there were doubts that I would come through the disease.

You have to be a strong person [to get through something like this], and you need quite a lot of support from others to get through it, because you just think you've hit the end. You think you're never going to see the light at the end of the tunnel. You think, I'm not going to do this; you can give up so quickly. I knew I'd get a bloody good telling off if I said I'm going to give up. I'm glad I didn't. I know I'm getting somewhere now, I'm definitely getting somewhere. I'm getting back to my normal self, which I have been waiting for for a long time. It's been a long wait, a very long wait.

I had to be patient, which was hard because I thought I could just get out of bed and get in my wheelchair and go out. But I'm still not ready for things now. I mean, I can't get straight up in the morning. I can't get out of bed and crawl along the floor, else I'll go dizzy. I'm still not 100 percent strong, but I'm a lot stronger than I used to be.

I've lost my independence. In the beginning I had to rely on people quite a lot. I don't have to as much now: I manage to do things for myself, and I'm learning to walk again. I should get independence back, but I've also got to get into the habit of being able to cope with going out on my own and not being afraid that I'm going to fall over. I've got to get used to being myself again, because I was quite independent before I got the illness. I need to say, "Amy, do it yourself."

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Amy















Amy with her mother and doctor

With her mother and doctor at a follow-up appointment, during which she was fitted with her new prosthetic legs
















Amy in wheelchair with mother

With her mother at St. Mary's
















Amy walking

Taking her first, halting steps on new legs
















Amy

In a reflective moment




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