After you graduate high school, where are you going to school? Are you going for two years or four? Do you know when you will graduate?
For most people, these questions have answers by the time we’re reaching the end of our junior year of high school. We’ve been prepped to apply for colleges and universities and will be ready to attend the college we get into only 3 months after we graduate high school. It’s a normal process and just about everyone goes through it. What could go wrong? If we just focus and work hard, why would we need a backup plan or two?
What no one considers is having a wrench thrown in that process. I’m not talking about not getting into your number one university. I’m talking about a problem you can’t even remotely control. My wrench? Illness.
I’ve talked quite a bit about my illness and how it has affected my education, but what I’m only realizing now is how it has affected my ability to plan.
When I was a junior in high school, I had to drop out in the spring because I was gone for so long, I couldn’t make up the lost time; my immune system was so suppressed that I couldn’t be around that many people. But, I was still the same Type A person I had been my entire high school career. I immediately figured out how I could graduate on time with my class. What I didn’t even think about is that my plan to graduate high school on time hinged on my disease staying in a manageable state. My graduation plan was already my Plan B. It didn’t even occur to me that I might need a Plan C or D.
Luckily, Plan B was a success: I graduated high school with the rest of my classmates. I had my acceptance letter from the University of Illinois and I was already planning on possibly deferring my admission a semester due to surgery. Deferring wasn’t ideal, but it was already a part of my plan and it didn’t bother me. I had enough college credits already earned through high school that I could start college a semester late and still graduate in 2016 with the rest of my class.
I made it through my first semester of university with only a few health hiccups and overall, it went fairly well! I got an apartment with a roommate I met online and we signed a lease for the upcoming school year. The exact chain of events are unclear, but I know I had to drop the next spring semester because I needed another surgery for Jpouch prolapse. This is where Plan B started to slip through my fingers.
Plan B didn’t account for another major health problem. Plan B already got me through a major surgery that was supposed to permanently fix my Jpouch and keep it from prolapsing. It didn’t even occur to me that I would need another surgery for Jpouch prolapse because yet another prolapse wasn’t even on my radar.
I remember still trying to plan my university graduation date, but it would have to be in the spring of 2017 giving me some wiggle room and making it possible to graduate with my sorority pledge class. I guess you could call that Plan C. However, more health problems popped up and I needed another surgery. After Plan C, I didn’t plan a graduation date. I couldn’t do it anymore. Plan A not working out was unexpected, but Plan B wasn’t hard to make. I still hadn’t lost hope when Plan B didn’t pan out. But when Plan C, my third plan, fell apart, I couldn’t make another plan. With the failure of each plan, I was just as devastated as before – if not more so.
I have had to drop so many semesters of school that the last few years are a blur. I know what classes I have credit for and what classes I still need to take in order to get into nursing school, but I couldn’t tell you the amount of times I’ve had to drop classes because of illness. I stopped making an exact plan for a graduation date because my illness has been so unpredictable.
Fast forward to now:
I had surgery on May 23rd to revise my ileostomy because my stoma had retracted again. This time, they used permanent stitches so they are confident my stoma will stay on the outside like it should. I’m at home now recovering and the plan is to still keep my surgery date in July to remove my Jpouch and anus along with some of the anal sphincter muscles.
After this surgery in July, Jpouch prolapses won’t be a problem. Unless I have a disease flare up (which hasn’t happened in a long time), I will be okay. I shouldn’t need more surgery. At the risk of jinxing this upcoming surgery, I’m conceivably predicting that it will be my last for quite a while. This means that I can make plans for school. I know the classes I need to take and I have an application deadline for nursing school. Now, I have to do something I haven’t been able to do for a long time: plan.
For the last few years, my planning hasn’t gone past a semester of school because even the next few months of a school semester weren’t guaranteed. Now that this surgery could be my last, I can make plans. Real plans – like planning semesters (yes, plural) and graduation dates and when I can apply for jobs, etc.
I am taking my life in my own hands and doing what I need to do in order to move on and make a life of my own. I can apply to nursing school after passing the chemistry CLEP exam and could conceivably be in my dream nursing school by fall next year. I will have completed my prerequisite courses and will spend two years there and graduate with my bachelor’s degree in nursing. This is the first plan I’ve been able to make that gets me further than only one semester of school.
I should be ecstatic. But the amount of fear I feel is overwhelming.
I have been sick for the last six and a half years of my life. It took me a little while to get used to it, but it became my new normal. As much as it devastated me and scared me, I made peace with the fact that I was sick and could only plan a semester at a time. After I heal up from my surgery in July, this won’t be the case. (Fingers crossed!)
I’m so proud of my decision to make my ileostomy permanent because it will give me my life back. But I have gotten so used to being sick that I honestly don’t know how to live the life I’ll be given back. If you’re a little confused, I understand. This sounds really strange. But think about it this way: I’ve never been a healthy adult. I’ve been sick since I was 17 years old. All of a sudden, I’m going to be a healthy 23 year old. I haven’t been able to be independent because I was a minor and then I was sick. After July, I won’t be either of those things.
Don’t get me wrong, I don’t just need to be independent – I want to be independent. I haven’t wanted anything other than independence for a long time. But I honestly don’t know how to be self-sufficient and on my own. The way I know how to live is on a day-to-day basis. If I’m lucky, I’ll get through a semester of school without having to withdraw. It sucks living this way. You can’t plan ahead for anything because you never know what your health will throw at you. But I have gotten used to it. It isn’t scary anymore; it’s my normal.
What scares me is hope. As a society, we are only really prepared for two kinds of illnesses – the ones that get better and the ones that end in death. No one prepares you for dealing with an illness that you or your loved one will have for the rest of their life. A LOT of people around me fell away after the first year of me being sick because no one understood and they all held onto the hope that I was going to get better only to be disappointed when I didn’t. I held onto hope for a while too, but I’ve learned that the only thing you can truly predict about a chronic illness is that it’s unpredictable. Everyone around me holding onto an unrealistic hope only makes me feel more alone. There is no instruction guide for how to live your life as someone that won’t truly get better. You have to make it up as you go along. This is exactly why it’s scary to plan for the future.
Does this mean that I believe there is no hope? Absolutely not. I just don’t have unrealistic expectations. For example: having my Jpouch removed should help a lot of my problems, but I’m not counting on it solving all of my problems. I’m not a pessimist. I’m more of an optimistic realist. Bringing hope back into the picture is scary, especially when I let go of it at least 4 years ago. Not to be dramatic, but I’ve had my dreams crushed so many times that I am extremely reluctant to hinge any aspirations on the sheer hope that I will get better. I want to be able to think that this will get better – that I will feel better. I just don’t know how.
Even in the face of overwhelming evidence to the contrary, I’m going to do my best to plan on getting better. I’m going to try my damnedest to plan for my future as much as I can. It’s terrifying to hope, but maybe it’s time to try it again.
The Spoonie Diaries 