06 Apr Sorry I Was A Little 💩
A little while ago, I asked our Facebook community an important question: Whether it had been easy or difficult to accept the ostomy into their lives.
I asked because, well, I love getting to know more about each and every one of you, but I also asked because I’ve had a hard time trying to writing this particular post (hence why it’s taken me so long.) Your responses have helped me formulate what I want to say, so thank you!
As you all know, the message I spread wherever I go is the message of acceptance. I tout that “you should accept yourself for you who are, no matter what” and that “the only option for a happy life is to acceptance.”
And for that, I’m sorry I was a little 💩. Pun intended. Message sincere.
I had ostomy surgery because I was on the brink of death. After 2 years of lying in a hospital bed in excruciating pain, I was told that without having the surgery, I would die. The decision was easy, considering the alternative.
My ostomy surgery also happened at, what I would consider, one of the most ideal times in my life, (if there ever was one). It happened when I was old enough to recognize the life that I was missing, to fully comprehend the choices I had in front of me, and to make the decision on my own. I was also still young enough that I didn’t really consider what others would think of me and the possible consequences that surgery would have. I also didn’t even know who I was yet so, while I don’t want to say that my ostomy defined me, it certainly didn’t change any major part of who I believed I was because I hadn’t yet become me.
But my situation is only 1 unique perspective.
On that Facebook post, a lot of you had the same mindset that I do, and I’m glad to hear it.
There were, however, many other people who commented that it had been hard, and others who sent private messages to the UO page expressing that it is still hard for them now.
I want you to know that I get it now.
There are so many other reasons why and how one receives an ostomy and not all of those situations are as cut and dry as mine was. Many people have had surgery due to injuries from an accident, medical mistakes, or simply come out of nowhere with no warning. Even for those who have had time to process the idea of an ostomy because of their Crohn’s or Colitis or Cancer, sometimes it’s not as easy to just say “this is how it has to be.”
Between my young age and having to make the only possible choice I could, I woke up from surgery just knowing that this was what had to be done and this was better than the alternative. That’s what made it so easy to accept. So I did.
And all this time I’ve been telling you that the only option is to do the same as me and fully accept yourself, no holds barred, without fully understanding the other options, or even considering that there were other ways to go about it.
That was until I listened to a This American Life podcast called “This Damn Mind,” which featured Michael Kinsley, a well-respected writer, and someone who had been diagnosed with Parkinson’s. As I listened to the podcast, I found my mind slowly opening to a world of thought that I had never considered.
The podcast discusses Kinsley’s writing, including his very poignant TIME article about the 3 ways to deal with a diagnosis: acceptance, confrontation, or denial
Acceptance is an aspiration, not a strategy. Confrontation means putting the disease at the center of your life: learning as much as you can about it, vigorously exploring alternative therapies, campaigning for more research funding and so on. Denial means letting the disease affect your life as little as possible. In fact, it means pretending as best you can that you don’t even have it.
While I do not necessarily agree that acceptance is an “aspiration,” per se, because it happened for me for automatically, I didn’t even consider that there were other ways to deal with news like this.
Kinsley, as he writes, is a believer in denial.
[…] When I got the diagnosis eight years ago, I chose denial. If ever you’re entitled to be selfish, I thought (and still think), this is it. So I see a good doctor, take my pills most of the time and go about my business.
What he said on this podcast, as well as what he wrote in this article, showed me a side of things that I had never considered: once everybody knows you have a disease, the way they think about you changes. Often, to pity.
Widespread ignorance about the disease has served me well. One of the worst aspects of Parkinson’s (and I suspect this is true of other chronic diseases, especially those affecting the brain) is the fact that everybody around you knows you have it. Although they are well meaning, their sympathy can be excruciating. (I’m sure mine is, too, when the situation is reversed.) On top of everything else, some physical symptoms of Parkinson’s—rigidity, tremors, a blank expression (facial masking, it’s called), a stooped posture, slow movements, and others—make you look a bit demented even when you’re not. Slurred speech, another symptom, doesn’t help, either. All of this is why I chose, like many, to keep my medical problems under my hat until the symptoms became undeniable.
For me, the choice of denial never crossed my mind. Everyone already knew I was sick, as I had been missing from school for 2 years. Students sent me cards, teachers sent me homework, and it didn’t even matter what this small group thought of me by the time I had surgery because I had been sick for so long, already. Surgery or not, they already pitied me and there was nothing I could have done about it. I carried this, so called naiveté on to high school and continued to talk about my ostomy, assuming it wouldn’t negatively affect how people thought of me. But did it? Maybe. I never actually knew. Not knowing (or caring) worked in my favour.
As Kinsley continues:
To me, confrontation and denial seem like equally valid strategies, and the choice between them is one of personal taste.
While my blind and unwitting acceptance worked for me, it is not for everyone. Which path you choose is of personal taste. A personal choice. A choice that I have been ignoring, and frankly, stomping on.
And for that, I am sorry.
Everyone has a right to choose their path, whether it be indisputable acceptance, confrontation, or steadfast denial. Hell, everyone even has the right to change their choice along the way. The point is, it’s a choice for you to make.
While I am never going to change the way that I think about my ostomy, I am going to make sure that I embrace the other schools of thought and support each and everyone of you, no matter what path you choose.
My one condition? Is that it makes you happy.
If you so choose to join me on the other side, I’ll be here. Showing my bag off like it’s no big deal.
Cause, you know, that’s what I do.
Nina Joyce
Posted at 08:34h, 07 AprilLovely follow up Jessica~~every day really is a different emotion for me. I’m grateful to be alive, but sometimes I cry and wish I was never sick or selfishly on really bad days, that maybe I just would have faded away and not had to deal with any of this. I try every day~~like we all do. It’s true, acceptance is different for everyone and in my case….can be different every day.
Kat Hopper
Posted at 08:13h, 23 MayI’ve had my ileostomy 17 years it only bothered me a short time I was more worried that my husband wouldn’t accept it then me! After all it was this or die? I had Hirshbrungs disease for my whole life I had suffered!
He loved me so much it didn’t bother him at all so I accepted my ostomy!
22 years of marriage and it has never mattered! Except when I get sick and need another surgery that just makes us sad!