I FINALLY won the battle with disability resources (DRES) and housing! I will be moving into my new room with a private bathroom on Sunday!! I’m so stoked! I need to have a bathroom to myself. I don’t think there is a need for an explanation there.
They were basically telling me about what I should do for next year, which was really helpful….. FOR NEXT YEAR. What do I do now?! I kind of gave up until I went back to my room and I cracked. It’s beyond frustrating.
So I wrote the director of housing and DRES and tried my best to tell them yet again how important it is. I am covered under disability and requesting a private bathroom is not an unreasonable accommodation. They were able to give me a single room kind of across from the bathroom – and I genuinely appreciate it – but it’s still not quite right.
I tried to come up with an analogy….
If someone was in a wheelchair and there were no more rooms that were wheelchair accessible, you wouldn’t tell them how to fix it next semester. You would find a way to make sure they have the appropriate accommodations. You could put them on the second floor which is better than the fourth floor but it’s still going to be difficult for them to get to their room.
Just because my disease is invisible, doesn’t mean that it’s not a disability or a handicap.
Lately, I’ve been going to girls-with-guts.org and it’s a great website! My mom just sent me a sweatshirt with their logo on it and I love it! It’s inspirational and it’s nice to read about other people’s stories that may be like mine. Surfing the website, I found this girl who wrote about her disease on her blog. It’s under the “about me” section and it perfectly describes how I feel about myself as well. Here is the post below (please pardon the language)….
here’s something I’ve been thinking about:
sometimes I make fun of my situation (I mean AT LEAST you can use such a fucked up situation as joke material, right?) by casually dropping statements like “I’m handicapped” or “I’m a cripple”.
and sometimes people get concerned over this and interpret it as self loathing, and then they say something like “don’t say that!” or “that’s not true!”.
I understand that this comes only out of good intentions, but I would like to clear something up;
I think that ultimately everyone should be allowed to define themselves and their own body and situation and feelings how they want. And I feel fucking disabled! That doesn’t mean I loathe myself for it or feel depressed about it every day (although occasionally I do). When I say “I’m disabled/handicapped” I’m simply telling it like it is.
I’ve been sick for 2 years and 5 months now. I have crohn’s disease; a chronic illness which has severely compromised my health and especially my digestive system. I have no colon, I’ve lost some of my small intestine and I have a permanent ileostomy plus a forever stitched shut asshole after a string of 5 major abdominal surgeries. All of this has considerably limited my body’s ability to digest properly; to absorb fluids, calories, vitamins and nutrition from everything I eat and drink, and there are certain foods that I’ve had to give up altogether.
prior to all of this I was relatively more or less a regular, healthy person for 22 years.
going from living in that body to living in this body is kind of devastatingly different.
if you have a condition that limits any kind of basic function of your body (like walking, moving, breathing, eating, pooping, thinking, etc.) you are, by dictionary definition, disabled.
that doesn’t mean everyone in that kind of situation needs to feel that way or should define themselves like that.
I know about plenty of people with ostomies (in fact, the majority of those that I know about), that do not experience themselves as being disabled at all. perhaps they were sick for years until they finally lost their colon / whatever was bothering them and now they feel an increased quality of life from their previous situation. that’s great! that’s amazing. I’m just not one of those people.
for me it’s like this: I used to be healthy, my body was normal, but then it lost its ability to function like it was designed to. I generally feel worse and function worse. I experience this as a disability.
However, I realize that there are so many people whose disabilites are so much more serious and limiting than mine. I am very grateful that my situation is not worse than it is.
I also realize that it is hard for others, especially healthy people to categorize me or think of me as a disabled person because it is more or less impossible to see any abnormalities on my body unless I get naked. I understand and sympathize with this because I too was once a “regular”, healthy person and I know that at that point in my life I didn’t fully understand these things either, and didn’t try to.
healthy people always want sick people to “recover” or “get better” and I understand that desire, but sometimes that is just not an option, and that can be ok too.
if you ask me how I’m feeling and I answer honestly I might say “not great”
but if you then immediately ask me how I’m doing I might honestly say “great”
because those two factors don’t have to go together.
I work really fucking hard every day on finding ways to work around my disability so that my quality of life can be as high as possible and so that my life can be as “normal” as possible and so that I can accomplish as many of the things I want to accomplish as possible. I am very grateful that I am able to do this and this is why I am doing fine, most of the time, even during some times when I am not feeling fine.
I’m sick. I’ll always be sick. It’s ok. I’m fine. I expect to continue being fine.
“I’m sick. I’ll always be sick. It’s ok. I’m fine. I expect to continue being fine.”
That is perfect. It perfectly describes how I feel about myself.
This person above and myself have gone through the mourning period. I was reading a blog yesterday that this girl writes because she feels like she is still going through that period of mourning. It’s important for any of you reading this blog to understand that I wasn’t born with nerves of steel. It takes a long time to be able to let things roll off of your shoulder. I’m past the mourning period and someday you will be too. You have to give it time. I’ve been sick for two years and I am just now to the point where I can talk about this and not cry.
When you are diagnosed with a life changing disease, you are forced to accept the fact that your body isn’t ever going to be the same. Everything changes. My body attacked my intestine to the point that it wouldn’t function anymore. Having it removed finalized that I will never be the same. Mentally and physically I am different. I’m not the same person I was two years ago.
It’s like losing a loved one. At first you are in shock. Numb. It doesn’t seem real and you try your hardest to focus on other things – maybe trying to get everything figured out when it comes to funerals and wills. You can’t believe that they are gone. It isn’t until everything settles down that you really start to feel the pain of that loss. You have to have time to grieve and eventually you will be able to pick yourself back up and move on. Nothing will be the same, but you can try to make things as normal as possible.
Being diagnosed feels the same. When I first got sick, it didn’t occur to me that my life would be different forever. All I wanted to do was be strong so my mom could keep herself together and so that my brother wouldn’t be afraid to visit me in the hospital. I would have my moments almost every day where I would just bawl because I didn’t even look like me anymore. I was pumped full of so many drugs and my hair was breaking off and falling out. I tried my hardest to brush things off and when I got released from the hospital, I felt like it was all ending. I would go back home and recover some more and my life would go back to normal.
It wasn’t until the summertime that I realized that this was never going to end.
When I went back to high school for the first time in eight months, I started having panic attacks that would get me so worked up that I’d have to go home. I started seeing a counselor and was soon put on antidepressants. Obviously, I was very depressed. Even with my medications, I still felt immense pain over the part of me that I had lost. I felt great sometimes but when I had time to myself, I thought about how my life had changed and I would sob. It wasn’t fair. Even in April of 2012, I went through a period of self-loathing. I hated myself – particularly my body – and I was mad at God. Then I was given another ostomy that was pure hell and that is the only time I can remember asking why me??
It wasn’t until after my last reconnection and my acquisition of a job in November that I started to feel like the old me again. I had motivation and I wanted to do things again. Now that I’m in college, I feel like I can do anything. I have accepted the fact that my life will never be the same and in ways, I’m grateful. This disease has made me a stronger woman than I ever thought I could be.
- Liesl ♥
p.s. If you are looking for a little update on me, I am still losing blood. Although the cause hasn’t been determined, I was tested for C Diff and it was NEGATIVE. Thank God! I’m so happy to not have C Diff but also nervous too because that means that it’s just my body fighting itself. Hopefully I won’t be put on chemotherapy. I’m already on Pentasa. Waiting on a call from my GI doctor to give me the next step in the plan of action…