- Meet Consumers/Patients
|Newsletters: Getting Grounded (In a Good Sense)|
Getting Grounded (In a Good Sense)
I’ve had short bowel syndrome for almost eight years now. It started with a malrotation when I was a month from finishing up my junior year of high school. I missed the end of that school year and the first bit of the next. Although it was a very tough time, in a way I’m glad it happened. It changed my whole outlook, and in a sense gave me a spark to get out and do more with my life.
When I was well enough, I went back to school as a senior. I started with half days. I went one day in the morning and the next day in the afternoon until I had enough strength and stamina to go a full day again. It was a challenge at first, but I managed, then I graduated. Next up was a bigger hurdle: college.
I had a lot to think about when it came to college. Most people do have a lot to worry about when getting ready for college, but for me it was different. I had a complicated medical therapy to manage, and it was still pretty new to me. I had only had short bowel syndrome and been on HPN for a year. But I was ready for college. Or so I thought.
I decided on a school in St. Petersburg, Florida—five hundred miles away from home. Before I finalized my plans to go to school there though, I traveled down to St. Petersburg to tour the campus. One of the first things my parents and I checked out was the health center. I had an implanted device (commonly referred to as a “port”) at the time and needed someone to change the needle out for me. (I’m a wimp. There was no way I was going to stick myself!)
We met the nurse at the school health center and explained my situation to her. Luckily, she was very capable and could take care of me. She was also extremely nice and accommodating, which was important to me.
The Dorm Experience
While we were there, my parents and I also toured the dorm rooms. Ugh, dorm rooms. I don’t think there are a whole lot of great things you can say about dorm rooms: they’re small, dirty, and you have to share a room the size of a broom closet with a stranger.
It was suggested that I might be better off in a handicap suite. These suites were equipped with their own private bathroom that included a tub/shower. Also, I would have the room to myself, so I could arrange all my medical supplies however I wanted to. As nice as that sounded to my parents, I didn’t want any part of it.
I was going to college. I wanted the college experience. I just didn’t feel like a medical room was what I needed. I was only hooked up to my HPN at night, so I reasoned I didn’t need all that extra room. I decided on a regular room.
One thing I did do was to call my future roommate. I didn’t think he would appreciate it if I showed up on move-in day and said, “Hey, I’m Jameson. Make room for all my meds!” So I called him about a month before we moved in to give him a heads up.
I explained to him my condition. I told him that yes, there would be medical supplies in the room; yes, he would have to see me hook myself up at night; and yes, it may be strange at first. Lucky for me, he didn’t mind. He was very open-minded about it.
After we moved in, my roommate was curious about everything I had to do, and I was more than happy to explain all of it to him. As for the other people I met that year, it was pretty much the same. I went about my business as I normally would. If there were people in our room and I needed to start my HPN, I would just tell them I had to start it, explain to them what I was about to do, and invite them to watch if they wanted to.
I only went to that college for a year. I discovered it just wasn’t for me. So I transferred to Georgia, which was where I went to high school and where my family was—for a short time, at least.
My family moved a few weeks before the new school year started. I had to find an apartment. I also had to start making new friends, since most of my friends from high school had gone off to other colleges.
I got an apartment in town, right down the road from the University of Georgia, my new school. Needless to say, I had a lot more room than I had had in the dorm room. So you would think that I would’ve had an easier time, right? But then you must not know me too well.
Before, in Florida, I was far away from my family, but I had the nurse I saw every week, or whenever I needed to. I had meals through the meal plan, and I was a quick stroll away from all my classes. It was totally different now.
Now, I lived off-campus. I had to find food for myself and I had to schedule a home-healthcare nurse to come change my dressing every week. For once, I had to actually take care of myself like an adult. And let me tell you, I wasn’t too great at it.
I went to a party school, and all my friends partied. So what did I do? I partied. In and of itself this isn’t necessarily a bad thing to do, but when you’re on PN and have medical problems, you need to know when to stop and how to take care of yourself. I didn’t know how to do either, and I paid for it. I was sick a lot and in and out of the hospital with line infections. And as for school, let’s just say I wasn’t on the honor roll.
Did I have fun? You bet. Did I have too much fun? Definitely. Did I learn from all of it? Eventually.
Stuck in a Rut
Part of my problem was I had no direction. Before I got sick in high school, I didn’t even want to go to college. Then it took me until my fourth year of college to find what it was I wanted to do with my life: I wanted to teach. That’s when things started to finally click.
I realized I would never reach my goals if I didn’t start taking better care of myself. How could I get up in the morning to teach a class full of kids if I was constantly getting too sick to even get out of bed and go to a class that started after lunch? I decided to do something about it.
I finished up my five-year run of college with a bachelor’s degree in psychology. (I couldn’t get a teaching degree because I was too far along in my major to switch.) And I decided to suck it up and do what I knew I needed to do: move eight hundred miles to live with my parents again. I knew if I stayed where I was, I wouldn’t be able to get out of the rut I was in.
Even though it wasn’t exactly what I had in mind when I graduated from college, moving back in with my parents was one of the best things I could have done. I started graduate school the next fall, and I’m set to graduate this May with my master’s degree in elementary education.
It isn’t always easy living in my parents’ home after five years of being on my own. But the move has allowed me to focus on school and, most importantly, on my health. I’m healthier now than I think I’ve ever been in my whole life, and I’m moving toward achieving my goal of being an elementary school teacher. This summer I’m planning on moving back to Georgia, getting a job as a teacher, and living life to its fullest. I don’t know what the future yet holds for me, but I think I’m pretty capable of taking whatever it throws at me.
Lessons from the Teacher-to-Be
I’ve learned a few things from going to college with short bowel. Probably the most important thing I learned is how critical it is to take care of yourself. Make sure you don’t wear yourself too thin.
There are a lot of new things to do when you’re in college, but that doesn’t mean you have to do them all. Slow down if you’re tired. You can do other things after you’ve attended to your medical needs. You cannot do them, however, if you’re stuck in the hospital.
Know your limits—on everything. If you don’t think you can handle eighteen hours’ worth of classes, take fewer classes. If you don’t think you can stay out until two in the morning with your friends, don’t. Go home and get some rest. Your friends won’t think any less of you for wanting to watch after your health (and if they do, you need some new friends).
College is a time for new experiences. Try something new; you might like it. Talk to your neighbors; they may end up becoming your new best friends.
Don’t use medical problems as an excuse to not do something. I’ve gone scuba diving, traveled more than Lewis and Clarke, and have made enough memories to last a lifetime.
And lastly, find something you love. In my case, it’s teaching. Once you find that one thing, there won’t be anything to hold you back.