I belong to a few online Spina Bifida communities. These are online forums that allow individuals with SB and their immediate family members to have emotional support, camaraderie, and get advice on the issues they may be dealing with. These are wonderful groups and I have met a lot of great people and learned a ton of things that even I did not know about Spina Bifida.
But one thing that seems to be common in all of these groups is that the members all have days that they exclaim, “I hate SB!” or “I’m having an I hate SB day!” As much as I have grown to love and respect these people, I just can’t relate to that. A lot of the people that say that are the parents of young children with Spina Bifida. I totally understand that. No parent wants to watch their child suffer through surgery after surgery. I’d be willing to bet my own mother hated Spina Bifida, too. I’ll have to ask her. 🙂
I know we all have bad days and need to vent. But on my worst day, I do not hate my disability. When I’m suffering with fecal incontinence, which SB can cause, I hate THAT. But not the SB. I hate that I sometimes get urinary tract infections because I have to catheterize, and that’s a result of the SB. And I damn sure hated when I suffered with a pressure sore on my right heel for almost 8 years. But I still don’t and have never hated SB or having SB.
Spina Bifida isn’t who I am. But it IS a part of who I am. It has helped shape me and mold me into the woman that I am. I, of course, don’t know for sure, but I doubt very seriously that I would be the same person if I did not have SB. I think because of SB, I am more understanding to differing minority groups. You can’t truly understand what it’s like to be a member of a minority group and what they go through, unless you, yourself also goes through them. Sure, you can have empathy for someone. But you can’t truly understand unless you’ve dealt with similar situations, no matter how hard you try.
Because of Spina Bifida, I have even had the chance to go up in a hot air balloon. Years ago, one came to my area and it was specifically FOR people with disabilities! I have always had a fascination with hot air balloons and I had never seen one up close and in person before or since then. So Spina Bifida definitely gave me that chance.
I don’t know. I definitely think that SB is a GOOD thing for me. I have many experiences because of it. I work hard because of SB. I’m more independent because of SB. I don’t give up easily because of SB. I feel like if I didn’t work hard, or wasn’t independent and gave up easily, people would expect that because society has a skewed image of disabilities and doesn’t expect much from us. So, Im out there doing what I can to prove all of you wrong.
All of that is not to say that I have had it easy because of SB. I’m not skating by just having an easy life. I have had pretty bad experiences with SB. 50+ operations, painful UTI’s, pressure sores, MRSA, osteomyelitis. I’m an extremely lucky woman. I know that. I am blessed to be alive. I’m not blasé about it. I KNOW I’m lucky.
I just don’t hate Spina Bifida. I feel like if we hate anything at all, we should hate the things about ourselves that we can change. Like, I DO hate that I’m overweight. I can change that though. Yes, it’s hard as shit to change. But it can be done. I hate having naturally curly thick hair that prematurely greys. I can change that…and I do….every chance I get to go to the salon. I don’t want to hate SB. I can’t change it. So, why bother? I feel it would almost be an unhealthy obsessive thing to do. And since it’s such a big part of who I am, I feel like I’d be saying I hate myself. And I damn sure don’t hate me!! I love me some Shirley Donkey. I’m not conceited. But I am confident in who am and what I can do.