By Sarah Stone
(Never published)
It’s been a while since my last doctor’s appointment, but it’s still feels pretty routine. I hop up onto the crinkly paper-lined exam chair and take off my socks and shoes while my parents try to find a place to sit down. Since all of my regular doctors are near my hometown just outside of Chicago, my parents usually come along to my appointments. They’re concerned about how my feet are progressing; especially since I called them a month ago saying that I’m interested in studying abroad next year. Inside my foot doctor’s office I explain my plans for next year.
“Well, I want to try to study abroad in London,” I say. “I’m worried about how much walking I’ll have to do. Lately I’ve been trying to walk more on the inside of my right foot to toughen it up, but instead it just starts bleeding. I feel like I’m just walking on bone.”
Meanwhile, Dr. Zygmund pokes and prods at my disfigured feet. He turns to his drawer and pulls out what appears to be an oversized, metal nail file, and I instinctively look the other way.
Out of the corner of my eye I catch a glimpse of my father. Nervously taking a quick breath through his nose, he turns toward the back wall with a half-wincing, half-embarrassed uncomfortable smile on his face.
I stop midway through what I’m saying. I’ve seen that face before.
Every time he was in the hospital with me while I was getting the dressings on my legs changed or at my check-ups when my surgeon would remove dead scar tissue from skin grafts, my dad would make that same wincing-smiling face. It’s been over two years since I’ve seen it, and I had almost forgotten that my dad, the strong silent type, the TV remote holder, the William F. Buckley, Jr. admirer, couldn’t handle watching his youngest daughter go through the slightest pain.
During my freshman year at MU in April of 1999 I had Bacterial Meningitis. The disease took most of my toes, large portions of flesh on my legs and feet, some of my hearing, some of my hair, some of my self-confidence, most of my independence, and the notion that “it’ll never happen to me.”
It gave me a limp, a temporary handicap parking tag, a different kind of confidence, a new kind of independence, and a greater appreciation for the little things in life.
April ’99
The first semester of my freshman year was probably like most college freshmen’s: I had trouble finding my place at first, I struggled with my classes, I got involved in more activities than I could handle and I attempted to live a busy social life.
Second semester I moved into Mc David residence hall, and the close-knit group of artistic, creative, spontaneous kids I met there was everything I was looking for in college.
Saturday, April 17 – Sunday, April 18
I woke up sometime around 1 or 2 p.m. after partying the night before with people from my dorm. With finals a few weeks away I had a ton of homework hanging over my head. Instead of working on anything I played video games most of the day. I had purposely engineered my room so that I could get a Mountain Dew out of my mini-fridge and reach my Playstation without getting out of bed. Later, I met up with my best friend Nick to get ready for the “rave” we were going to later that night. I wore fluorescent rainbow bellbottoms and he wore a silver spacesuit he had bought on eBay.
We got home around 6 a.m., and after a much needed shower, I got to bed around 7 a.m. Unfortunately, I had to be up an hour later for a lacrosse game. By 8:30 a.m. I was riding in a teammate’s car on our way to Truman State University for our game. I finally got home late Sunday afternoon and took a nap before going to a Slayer concert that night at the Bluenote.
Monday, April 19 – Tuesday, April 20
I was much too run down on Monday to go to classes. I felt the early stages of a cold and slept most of the day. Later that afternoon I went to the Student Health Center to get some cold medication. Being April, I figured I was just suffering a little hay fever.
By Tuesday I still wasn’t feeling better and I again stayed home and slept most of the day. Later that evening I felt well enough to play in an intramural soccer play-off game. After our season ending loss I met some of my friends from Donnelly Hall also participating in play-offs for their dorm. My friend Melissa came up to talk to me and mentioned that Alicia wasn’t playing on their team that night because there had been a shooting at her old high school. That was the most I heard about Columbine until weeks after the event.
That night I was on the phone with a friend from home. Partway through our conversation, I began feeling a fever and chills and I suspected that I was coming down with the flu. I told my friend that I thought I was getting sick, so I needed to get some sleep.
I talked to Nick to let him know that I was getting the flu and wouldn’t be able to watch the Simpsons with him at 1:30 a.m. like we did every weeknight. He came down to my room and brought a bucket of ice. He moved my chair next to my bed and set up the bucket of ice, a cold washcloth for my forehead, and my telephone.
That night I was restless. I couldn’t get comfortable. I was both hot and cold all night and couldn’t fall asleep.
Wednesday, April 21
I woke up around 6 a.m. because I had to throw up. I continued vomiting and trying to sleep for the next couple hours. Nick came to check on me around 8 a.m. and said he’d take me to the health center when he got back from his class at 10. I called my mom to let her know I had the flu. From this point on my memory becomes hazy. My vision became blurry and I had to feel my way down the hallway to the bathroom. I had trouble getting to the bathroom in time before throwing up. When I didn’t make it, I used Nick’s ice bucket. I tried drinking a Fruitopia to re-hydrate but nothing would stay down. I’m not sure how or why, but I ended up sleeping on the floor.
By the time Nick got back from class, I was growing delirious. He took my temperature, and it was around 104 degrees. He called the health center for advice and I remember talking to a nurse on the phone, but nothing she said made any sense to me. Rob, our RA came up to my room because my dad had tried to call my room but no one answered. He then called the front desk, and Rob came up to check on me.
Luckily, McDavid is located right next to the health center because I could no longer walk on my own. Nick held me up as we slowly took baby steps through the dorm. As soon as I got outside I lost almost all of my vision. It was a bright, warm spring day. When tried to look straight ahead everything turned white. I could only see when I looked down at the ground. I was still wearing the t-shirt and shorts I had played soccer in the night before.
As Nick and I were going up and down stairs at the health center trying to find where I needed to check in, a nurse saw me and immediately recognized that I was severely ill. She led me into an exam room. I climbed onto the crinkly, white-papered bed. I became uncomfortable and restless. I began falling in and out of consciousness so I remember only little snippets here and there.
I remember kicking off my sandals, but I don’t remember why.
I remember staring at the tan blinds in the room. I think I may have asked a nurse to close them.
I remember taking Aspirin and drinking yellow Gatorade from a tiny plastic cup.
I remember seeing a large purplish-reddish splotch on my right hand. I told the doctor about it, and he asked me if it had always been there. I think I may have been crying.
I remember being moved onto another bed with white crinkly paper. This time there were metal bars on the sides.
I remember being in the back of an ambulance and a paramedic asking me if I knew where I was. “I’m in the back of an ambulance,” I replied. He asked me what city I was in and what the zip code was. I believe I answered “Columbia,” and “65201.’
I remember lying on my side with many doctors surrounding me.
I remember getting a spinal tap.
I remember a doctor asking me a question, and I cried out, “I don’t want to be sick anymore!”
That’s the last thing I remember.
April 24, 1999
Dear Sarah,
Your Mom, Laura, and I were collecting supplies and medication at Osco today and we thought it would be a good idea to create a journal for you. We want you to know, when you’re well, about all the people who love you and were concerned about you.
You have been sick for three days at the time we are starting this journal, so I’ll try to recreate the first few days from memory. We’re all in a bit of a fog, so I’m sure I’ll miss a few things.
Love, Dad
4/21/99
You called Mom about 9:30 in the morning to tell her you’re very sick and you were going to the Student Health Center when Nick gets out of class. Mom called me at the office a few minutes later. I tried to call your room and you didn’t answer so I called to the McDavid RA to check on you (I don’t remember his name). He paged me back at 10:30 that you were ok and that you were going to the student health with Nick.
1:45 – The emergency room called Mom and said you were in critical condition and to get to Columbia as soon as possible. We found out later that Nick said he had to almost carry you to the student health center. Luckily, the doctor at the health center recognized the bruise on your hand as a symptom of the infection. Mom called me at work and we rushed home to get the next flight to St. Louis and drive to Columbia. Mom & I rushed out so quickly we forgot most everything we needed to bring. Mrs. Nelson dropped everything to drive us to the airport. We called Laura to let her know. We hoped to get on the 4:30 flight but couldn’t and had to wait until the 5:45. Meanwhile we called the hospital and talked to several doctors. Dr. Kaplan was you primary doctor and he told us to get to Columbia as soon as possible. We couldn’t get there until 9:00 pm. Dr. Kaplan told us things were grim but that you were young and a good fighter. Chris was your attending nurse. He is real comforting in that he is concerned and lets us know how things are going. Sarah McMillion and Nick have called the hospital to check on you. Mom and I slept on the floor in the waiting room so that we could be nearby.
4/22/99
Hey SAS! This is Laura here. This is the day Eric & I came down to see you. Gosh, I was a wreck Wednesday night when I talked to the Dr. and found out how sick you were … You look so sick sweetheart but I’m so glad I got down here to be with you. I miss you so much. Eric & I & Eric’s parents are praying & praying for you. We love you!
Sarah, you had several visitors today. Sarah McMillion brought you an angel. Dori also came with Sarah. Nick came by, but couldn’t get in. Lisa also came by with another girl, but we didn’t get her name. The social worker got Mom & I a room at the McDonald House so we wouldn’t have to sleep on the floor again. Liz, Melissa and Nate tried to stop-in, but the hospital wouldn’t let them in. Someone also gave Mom and I a gift certificate to Los Bandito’s, but didn’t leave a name. The soccer team sent flowers, lots of names. The doctors were happy that you made it through the day, so we started to feel some hope. Your day nurse was Dan and he took very good care of you.
Dad
4/23/99
Hi – Laura here again. Seems like you’re doing better. The Ronald McDonald house helps a lot. Mom & Dad were able to rest a little last night while Eric & I stayed here. Eric had to go back home so we took him to the airport @ 6:00pm. We met Nick for the 1st time. He’s very nice and he’s awfully concerned about you. He was crying … I got to see your dorm room. It looks like a real nice dorm and a lot of fun. I like the way you all write and paint on the walls. There was an ongoing story on the wall next to your door and I saw one of the things written was “screeching eels. Inconceivable!” and I knew that you must have written it. I miss you! Mom & Dad rushed down here so quick, they didn’t bring extra clothes so Dad took one of your A&F flannels. Mom took your peacoat & I took a hooded pullover that was once mine long ago. We also realized that you were still wearing your contacts so your night nurse, Michelle, took them out. Your nurse during the day was Allison. She was very nice too.
4/24/99
You had a rough night last night so you’re a little worse off this morning. Silvia is your nurse today and things seem to get better during the day. The doctor (Dr. Rumblath) was less encouraging. He told us that you may be in the ICU for a few weeks. He also warned us that you could loose some toes to the infection. Not good news, but we’re still hopeful, as are the doctors. We ate lunch in the cafeteria. That was terrible!! We won’t do that again! Nick brought you his award medal for good luck! Nick, Melissa, Liz and Lauren decorated you room. Several other gifts were sent; a fruit basket from the student health dept. Mom’s office sent a gift pouch of candy and Starbucks for Mom and the pancake bear for you.
Dad
April 25, 1999
Hey Hey –
I’ve been to see ya every day since you’ve been here, and I’ll be here till ya get out. And then we can go watch all the Simpsons episodes you’ve missed. Sound good? We can cash in on that pizza coupon, vedge out, and have a stupidly fun time.
Twain food was ok. I didn’t really feel like the usual patty melt… Guess it wasn’t truly a ‘patty melt Sunday’ anyways – I didn’t come home from work to wake you at 2:00, so the routine was thrown off anyways. I babble too much … Nick-o
Hey sweetie – Laura here. You created a stool last night ~ Mom & I were very excited. Also, your chest x-ray didn’t get any worse so that’s a good thing. You’ve been running a fever all day so we’re a little worried about that; however, you are now only on one blood pressure medicine (dobutamine) and it’s only set on 1.0. You’ve really done a great job on getting your blood pressure up. They had to up your ativan (sedative) because you kept wanting to wake up and breathe faster than the ventilator. The Drs. & nurses want you to use all your energy on healing so they don’t want you to waste any of it breathing or moving. Your lesions are all starting to blister. It’s ugly but good b/c your body is trying to take care of itself. I have to go home tmw, but I’ll be in 1st thing in the am to write more I LOVE YOU
When we got back from the airport, we were paged by the doctor (Hunter Hoffman) that they were going to remove some of your tubes out and put in a new one. They were concerned that the old tubes could cause an infection. The problem was that the procedure could cause problems. The half- hour procedure took two and a half hours, boy were we worried.
Dad
Hi Sarah,
Well, I’m finally getting to sit down & write in your journal. It’ been quite a few days we’ve had. We’ve been up and down like a roller coaster at Great America! I know you’re going to be just fine soon. Everyone has been very nice to us… Your friends have been just wonderful. They’re all very concerned about you and care for you very much! You’ve had a bit of a fever lately (last night and then again today). We’re especially concerned about infections, pneumonia, etc. Dan is your nurse today. He was here when we got here last Wednesday. He seems very, very, capable and I feel you’re always in good hands here. Everyone at home is praying for you…everyone! The Church, of course, all of Farmstead, all of our friends and all of our families. Everyone that knows you is praying for you and that’s great!! The Sullivan’s (Jack…dogjaw) even called here yesterday to let us know they lit a candle for you at their church. The Fauver’s called from Aruba while on vacation to let us know they were praying and thinking of you. You’re a regular George Bailey! Friends have stopped by often, so many I can’t keep track. That’s why we started this journal. Nick has been here the most. We are very grateful he was able to get you here in a timely fashion on Wed. Uncle Dean & Aunt Carol are coming down tomorrow. We’re going to pack up your room and Dad will go back home w/them on Wed. My mom and sisters will come down to be with you and I on Wed.
Love – mom
April 28, 1999
Hi SAS! Mom here … You seem to be getting much better and look a tad bit healthier everyday. I’m sure it won’t be long now before you’re awake and talking to us. When packing up your things yesterday, I found the “It’s a Wonderful Life” book, so I thought I’d read some to you for a little bit. I have a little disposable camera in your room so I’ll try to be more diligent in taking pictures of your friends as they come to visit.
Hey Sarah Sarah,
Nick here … According to the nurse I just spoke to, they’ve brought you off sedation further and they’ve switched the mode of the ventilator so it’s helping you breath (as opposed to making you breath). I’ve felt positive lately, and the vibe here seems to be good. I guess you still have a long way to go, but you’ve come a long way too.
April 28, 1999
Sarah – You’re making all of these little movements that are such a big delight right now to everyone that has been visiting you and keeping you in their thoughts and prayers! You’re fighting the fight like we all knew you would. Love you – Melissa
Heya Sarah Stoner
Hey lovely! I’ve heard that today you opened your eyes! I knew there had to be some reason that my mood perked up partway through today… So, let’s see…today you’re apparently less sedated, your temperature is up a little, you opened your eyes (!) … I don’t remember what else. But people here seem happy at your progress. I think that’s a pretty good sign. At this rate, you’ll be up and ready to go by the end of finals week.
OK, you’re freaking me out now – respiratory monitor going crazy, strange beeping going on…please, please, please stop it?! This is scaring the bjeebers outta me! Those nurses are straightening you out now… I’m not sure what they’re doing now… *phew* seems ok now… they’re nice and are telling me what’s been happening …
Nice people. This respiratory technician feller told me that they’re going to try and get you off the ventilator tomorrow, I think. Sound exciting… I hope all goes well. [* Dammit! Sometimes you take so long between breaths! That was what, like the fifth time my stomach has dropped to my feet since I’ve been here!] … Nicko
April 30, 1999
Hey – you’re off the sedatives according to this nurse who keeps calling me “young man” (i.e. – “Well, hello young man!”). One of these days I’ll tell her my name so she can call me Nicko as everyone else does. I guess it takes a while to wear off to the point where you’ll be conscious. I wonder if you will wake up tonight … You keep moving around and kicking your right foot. This male nurse/medical fella/whatever says that when you’re moving around you are trying to wake up. I asked if it was ok to keep talking to you, and he said it was. I think. He put some “soft arm restraints” on ya so if you wake up and started to panic, you wouldn’t hurt yourself by taking out machinery and tubes and other medical stuff.
Sarah, Dad here, just got back from Naperville and you look a lot better. They’re trying to reduce the sedative so you’ll wake-up. What they don’t know is that you always sleep late, so it will be a bit longer.
May 1, 1999
Hi Sarah,
You are looking good today. Getting better each day. Dr + nurses can’t get over how fast you are recovering. With all Prayer’s said, there’s no way you wouldn’t. Recover fast!
Love you. Grandma Minnie
Hee Haw Sarah,
As Sam Wainwright says, you are going to have “A wonderful life.” We are so happy to see you doing better. You always have a positive attitude + you will recover fast. See you soon.
Love + prayers, Grandma Harden
May 2, 1999
Hi Sarah! We are so excited today because you opened your eyes and looked at us. You can hear us and follow us with your eyes too! You’re doing such a good job, it’s just going to take a while for you to be able to talk & breathe & move again …
Love, Laura
Dear Sarah
My name is Beth, I am your nurse tonight – this is the first time I have been with you. You are beginning to wake up but you will probably not remember this time. Your Mom & Dad have spent the evening at your bedside – massaging your head, touching your hands – fussing over their baby – I know fussing when I see it – I’m a Mom. So tonight I will rub your back with baby lotion and call you sugar + honey + worry about your temperature because I would want someone to do that for my baby.
Beth Curley
May 3, 1999
Sarah, today is the first day you’re awake for some time and able to communicate. You’re very uncomfortable, but it’s a process you need to go through to feel better. Mom & I don’t like to see you so uncomfortable, but we are happy that you’re making progress. You went for a ride today to get a CT to see if they could see why you have a fever. Looks like it’s a sinus infection, not very serious. You’ve tried to move your hands, but you’re still very weak, but you’re making progress.
Love, Dad
Hey there Sarah Stone!
You’re awake! You’re even following me with your eyes! That’s ok, you sleep. Or not. I wonder what you’re thinking. Geez, I feel pretty bad again. It must be frustrating to be as you are now. I’m not sure how ‘out of it’ you are right now, so I’ll do my best to speak to you as if you’re completely awake. I wonder now if this is going to change things much. Will you get depressed? Will your outlook on life change a lot? I worry that this will. I worry that emotionally you will be hurt. I understand that this would be pretty upsetting, and I want you to know that no matter what, I will be there for you. I’ve been all along. … Nicko
I was conscious by May 3, but I really don’t remember much of those first few days. I had been in an induced coma for 10 days. When I woke up I still had a breathing tube in so I couldn’t talk. I remember getting my CT scan. I really enjoyed it because I got to go for a ride and leave my room. Later, it may have been the next day, I ask my parents if they would just take me somewhere. I just wanted to go for a ride somewhere out of my room. However, I still couldn’t talk at this point, so I had to spell it out. I was too weak to write or even lift my arms off the bed. My dad got a dry-erase board and wrote out the alphabet. Then he would point to each letter and I would nod or shake my head to spell out what I was trying to say. It was tedious, but I don’t remember becoming frustrated.
On May 5th, the nurses took out my ventilator and I could talk; however for that first day I could only whisper. I remember that my friends Lauren, Liz and Melissa came in that day, and Lauren took one of the plastic medical gloves and blew it up into a balloon. I thought it was hilarious.
The next day I had somewhat regained my normal voice. I think it was then that the doctors told me I would probably lose my toes. I started crying and my mom was at my bedside holding my hand and telling me that I was so lucky because I came so close to dying. I’ll never forgive myself for what I said next.
“I wish I had died,” I said, sobbing.
I still can’t believe I said that. My only defense is that I didn’t know then what I, or rather, my parents had been through. I awoke and everyone was overjoyed just to see me. I remember being surprised to learn that I had been asleep for 10 days, and somehow before I woke up I knew that I had had Meningitis. But it took weeks before I understood how lucky I had been.
My sadness over losing my toes didn’t last long. All the lesions, like the red blotch I found on my hands, became gangrenous and turned black. The ends of my toes were also black, and for some reason I thought this was really cool. Every time I had a new visitor I would make them look at my toes.
I remained in the intensive care unit for a few more days before I was well enough to be moved into a regular hospital room. They removed my feeding tube and catheter. The feeling of those tubes coming out made me grateful that I had been in a coma when they had been put it. I was now only hooked up to a saline IV and an oxygen tube in my nose. I was really proud of myself for being well enough to move out of the ICU. I didn’t know at the time that the hardest part of my journey was about to begin.
Before I got sick, I weighed between 115 to 120 pounds, which is a healthy weight for my 5’2” frame. When I got sick, the doctors were pumping fluids and antibiotics into me. However instead of urinating out all excess fluids like a normal, healthy person would do, my system was so broken down I absorbed all the excess fluids into my skin and flesh. When the doctors weighed me, I was up to 135 pounds. My parents say that was after I began to heal a bit. They suspect I may have climbed as high as 150. Finally, when I released all the fluids, I dropped to 98 pounds. The rapid weight gain and loss left my body covered with stretch marks. Part of this weight loss was also muscle mass, so eating became my next biggest priority.
Unfortunately, I wasn’t hungry. I didn’t have an appetite. I also couldn’t feed myself. I was still too weak to lift my arms off the bed, so my parents had to feed me. My dad joked around about how he used to feed me when I was a baby, and he would pretend that the fork of mashed potatoes he held was actually an airplane or a choo-choo train. I found it amusing but also a little depressing because my 53-year-old father was spoon-feeding his 19-year-old daughter. I was no longer an independent college student living six hours away from her parents. I was an immobile, weak, completely dependent 98-pound girl.
My hunger still refused to return. I simply did not want to eat. Granted, hospital food tastes pretty bad, but even when my parents offered to get me food from anywhere else in town, I wasn’t thrilled. My parents were frustrated. They felt like all the progress I had made fighting the disease was useless because I was refusing to help myself. I wanted to be hungry, but I just couldn’t force myself.
The situation got a little better when I was strong enough to lift my hand to my mouth. The occupational therapists put big, blue, round, rubbery sponges on my utensils to help me feed myself. My motor skills were still pretty bad so I could only feed myself things like mashed potatoes or pieces of meat my parents cut up for me and stabbed with a fork. Pieces of fruit were tricky. Soup and vegetables, especially peas, were out of the question.
On May 13th I flew on an air ambulance from Columbia to Midway Airport in Chicago. I was moved to Northwestern Hospital right downtown. Leaving Columbia was difficult. I knew I wouldn’t see Nick or any of my ICU doctors or nurses for a long time. The doctors sent me out with a box of tissues because I kept crying.
May 13, 1999
Wweeel, looks like that about it for the half mad scribblings of Nicko. I haven’t written anything to you in a few days, for you’ve been conscious and perceptive of things. It is the 13th of May 1999, about 11:35 in the fast-dwindling morning. Very shortly now you will be boarding an ambulance that will be taking you off to board the airplane that will be taking you back to Chicago. They say you shouldn’t be in the hospital too long before Rehab. I hope that your laugh comes back again, soon.
It’s pretty amazing just how quickly you’ve recovered. I’m sure that you must feel frustrated at times, and I’m sure that there will be times ahead when you feel somewhat-less-than-perky… But when you do, take a look through this book, and remember the fact that most people don’t live through this. Pretty damn cool, if you ask me. I’m kinda proud to know you, I guess.
Wow – 15 minutes to go… gotta make this short … When you get back to Columbia next fall (still coming back, right?), we’ll hafta eat at China Chef, hit Itchy’s Scratch & Sniff, hit the wing-ding, then go get some pizza in time for the Simpsons… sound like a plan?
Eeep, that gurney-thing must be like the one they brought you here on… that stirs some long-dormant feelings of woe. I’m so happy that you’ve been able to pull through the worst of this. I know that the road to recovery isn’t too much further.
I will be thinking of you in the weeks and months ahead, and hoping that you’re feeling fine and doin’ all right. I’ll look at those legos and remember watching Conan and Ab-Fab with you in 4w-24. I’ll be looking forwards to being able to watch the Simpsons with you a little more awake than you have been in recent times.
Oop, time to go – that’s ok, this isn’t a ‘goodbye’ but a ‘see ya later.’ I love ya lots Sarah Stoner… later tater!
-Nick
I spent a few days at Northwestern waiting for my fever spikes to go down. When I seemed stabilized I was moved to the Rehabilitation Institute of Chicago (RIC). I was there from May 16th to June 25th. While there I worked on building up my body. The hardest part was sitting up straight. It sounds easy, but I had been lying down for so long and my blood pressure was so low that when I tried to sit up I’d get nauseous and dizzy.
This was a physically painful time for me. I still had open lesions on my legs and arms. I was treated much like a burn victim. The nurses put a white cream on my sores to make them mushy so they would come off easier. After applying the cream, they wrapped my sores in gauze. Whenever they took off the gauze, pieces of the lesions would come off but they often bled and they hurt immensely. I had my dressing changed twice a day everyday to speed the healing process and prevent infection.
Also, since I wasn’t moving around much, I had to get a shot of Heparin, a blood-thinning chemical in my stomach every morning. This wouldn’t have been so painful if I had weighed more, but since I was so skinny they had to give me the shots in the little bit of skin they could pinch. Often the shot would leave a little hard knot on my stomach, and eventually they ran out of places to give me shots on my stomach and had to reuse knotted places.
I got this shot in the morning, usually around 5 or 6 a.m. This was not the way I wanted to wake up every morning. Sometimes, they would also come by to take blood. I hated this even more. My body had gone through so much my veins had nearly collapsed, so when nurses came by to take blood they often had trouble getting enough and would have to stick me multiple times. It wasn’t long before I had track marks from needles and IVs up and down my inner arms. I was a way too skinny, sick-looking girl with track marks; I looked like a heroin addict.
Despite my physical pains, I was in high spirits while at RIC. I was recovering quickly and I was able to take care of myself on a small level. I could sit up, although not for long periods of time. I could feed myself, write, brush my teeth, and comb my hair. Although, due to lying down for such a long time, I developed a bald spot on the back of my head. I eventually my grew my hair back in that spot, but covering it up for a few months was a challenge. I had learned how to dress myself while in bed and I got strong enough with my arms that I could move from my bed into my wheelchair. The idea that I could get out of bed to wheel myself to a different room was a delight that I had taken for granted for the better part of my life.
I also had friends and family nearby. My parents often took me in my wheelchair along Michigan Avenue or near Lakeshore Drive on the weekends. The warm breezes off the lake and the hot summer sun were invigorating.
It wasn’t long before I could stand on my own two feet, or heels rather, since the pads of my feet were also covered in lesions. I think I started walking within one or two days, and shortly afterward I relearned how to climb up and down stairs. I couldn’t go very far and if I stood for too long my legs would swell up and turn red because my body still had difficulty pumping blood against gravity.
Being vertical changed everything. I was somewhat mobile. I could get up and get something on the other side of the room. I could talk to people straight on instead of looking up at everyone all the time. And most importantly, I could walk to a bathroom instead of using a bedpan.
I still had to get my toes amputated and have skin grafts on my legs and feet on July 1st. My doctors agreed to let me go home for five days before the amputation.
Home. I hadn’t seen my home since March. It was the first place I had been that I knew before Meningitis. Everything was so familiar: the rooms, the smells, the stupid grunge rock posters I hadn’t changed since I was 13. Everything was there, and my life felt like it was normal again.
I still had a long way to go. Over the next two years I had to recover from the amputation and relearn, again, how to walk. I had to learn how to adapt to my new legs and new feet. I had to gain weight and complete my freshman year. I had to figure out how to get by without ever wearing shorts or sandals again. I had to restructure my lifestyle, yet still try to pick up where I left off. Everything changed, some things for the better, some things not. My spirits rose and fell repeatedly. But I had done it. I had beat Meningitis and I could do almost anything.
I could study in London if I wanted to.
Dr. Zygmund continued working on my feet and I resumed telling him where my feet hurt. Overall, his diagnosis wasn’t encouraging. There wasn’t any place he could take skin from on my body that was durable enough to walk on. And so far, plastic surgery hadn’t been successful in these types of cases.
My parents were upset.
“If they can make artificial hips, why can’t they do anything about this?” my mom asked. The doctor gave us a referral to a plastic surgeon, saying that possibly he could help out and that it wouldn’t hurt to get another opinion.
I was content with this conclusion. It was a challenge. So far everything since April 21, 1999 has been a challenge. I worked my way back to being a typical college student living six hours away from her parents. I was a mobile, strong, completely independent 120-pound woman.
Sidebar/infographic:
- Bacterial meningitis is caused by the bacterium Neisseria meningitides.
- Between 2 percent and 25 percent of people carry the bacterium in their respiratory tract. It’s only dangerous when it infects someone whose immune system is run down.
- About 3,000 people in the United States develop full-blown bacterial meningitis each year.
- The bacterium is transmitted through direct contact with already infected persons. Direct contact includes kissing or sharing utensils, drinking glasses or cigarettes.
- Symptoms of meningitis include high fever, rash, vomiting, severe headache, stiff neck, nausea, and sensitivity to light.
- Meningitis usually peaks in late winter and early spring, overlapping flu season. Symptoms can easily be mistaken for the flu.
- The current vaccination is effective against four of the nine forms of the bacterium that causes the disease. It costs $60 at the Student Health Center and lasts for three years. Call the Student Health Center at 882-7481 for more information.
Information compiled from the MU Student Health Center, the Center for Disease Control, and the American College Health Association.
Saturday, December 01, 2001
My story
Posted by Sarah at 6:38 PM
Labels: Journalistic Tendencies
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10 comments:
I ran across your contribution at Self Portrait Tuesday and fell head first into your astounding story. I can't believe how many emotions and thoughts ran through my head reading the words of a complete stranger. Your courage, your parents' strength, the huge circle of love that surrounds you... I am awe struck.
I'm a mom myself and tried hard not to project that onto your story as I read it, but when I got to the part that was written by your nurse Beth, I lost it. I am a boo hoo mess right now.
Thank you so much for sharing this amazing experience and glimpe into your life.
I found you on SPT. Your experience is amazing. You are such a courageous person. Thank you for sharing this with us.
Wow. Thank you for writing this.
W-O-W. yeah, really, thank you for writing this. You're a very strong person and your story is touching. Good luck for everything.
amazing...
Also got here from SPT, and also shed some tears while reading. I'm glad you pulled through this awful disease, and I thank you for sharing this story.
You are an amazing human being. I saw your picture on SPT. Thanks for sharing your experience.
I found this story via solistella. i can't believe how much you've been through. thanks for sharing this, and thanks for your courage. amazing.
Like many others' who've commented, I found you through SPT. And like them too, I found my eyes full of tears reading your story. Thanks for being so vulnerable in a wide-open setting. I'm continually amazed at the people I "meet" in the blogworld. You obviously had a very supportive family and group of friends, which I'm sure aided your recovery more than you'll ever know. I think it's cool they kept a journal for you so you'd know what happened when you were in a coma. Congrats on your upcoming marriage.
Hi Sarah! Not sure if you remember me from high school-we were in the same class. (Niki Liss) Somehow I stumbled across your blog and had a chance to read this tonight. What an amazing story. I admire your strength and am happy that you are doing well! Thank you for sharing. Your daughter is beautiful! Congrats on all your success.
I have a blog of my own which you are welcome to read if you are interested. fromournest (dot)blogspot (dot) com
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