How Spina Bifida Changed My Life

When you are disabled people often look at disability as a bad thing because they are looking at all the negative. Having a disability certainly does has negatives but it is not all negative and without my disability, I would be a totally different person and who knows what kind of person that would be. If I was not disabled I would not struggle as much but without my disability, I would be a completely different person that had different traits and my personality would not be the same. I wouldn’t view disability in the same way or may not even care that much about it because like many abled people I wouldn’t see the ableism going on in this world or understand how inaccessibility is such a problem that needs to change. I would be one of those people that would be contributing the problem of ableism because I wouldn’t have a personal experience with it or know anyone that is disabled to help me understand that some things I do are hurtful towards the disabled community.  Sometimes you need disabled people to call you out on ableism and if you don’t have that you will continue to contribute to the problem and nothing is going to change.   My disability makes me who and if I was not disabled who knows what kind of person I would be or what kind of traits I would have but lets’ not worry about that and talk about what I do have as a disabled person.

I handle rejection well- I have been rejected by so more jobs than I have been offered and when I am rejected from a job I don’t get too upset about because I kind of expect it and when I am turned down I don’t look at it as rejection but as an opportunity. Yes, there is discrimination in the hiring process for disabled people but unfortunately, you can’t know unless it’s pretty obvious (which it usually isn’t) so I give companies the benefit of the doubt and think of it as maybe it wasn’t the job for me and a better will come even if it doesn’t!  Many abled people don’t get rejected from jobs nearly as often as disabled people do and when they are rejected by one or two jobs they have a very hard time getting past it.  Many people who have an easier time finding employment and often sit around moping about the missed opportunity instead of accepting it and moving on. My disability taught me how to handle rejection because sometimes rejections is a good thing

I don’t get embarrassed easily- My ACE (stoma for my colon) sometimes makes noises and smells and most people don’t understand so they are rude and say things they probably shouldn’t have. I can’t stop it or really have any control over it at all but I have learned that most people just think they are funny and don’t realize they aren’t and they’re commentary can be hurtful. People will be rude and what this has taught me is that you can be upset by someone’s actions but the only actions you can control are your own. I get anxious when I go to events when there will be a lot of food because of my many gastrointestinal issues since you never know when or if they will act up but what I have learned over the years is that I don’t get embarrassed as easily as an abled person because I have these issues. It is far more embarrassing to have an accident in a room full of people when your almost thirty than it ever will be if you are singled out in your lecture.

I have more patience than most people –When you are disabled sometimes you have to deal with rude people and more surgeries than most people. When unfortunate things happen or people are rude you can’t just become outraged because someone said something that was a little hurtful and it’s experiences like these that make you more patient. Many abled have a very low tolerance for rudeness but I experience it all the times and kind of expect so I have gotten into the habit of ignoring it. When I find out I need surgery I don’t get upset about like many abled people would but I learn to accept it because sometimes things don’t work out the way we’d like them to. You have two choices on how you can get through this: Be in denial and do nothing about it but worsen your pain and continue to feel miserable or do what no one wants to do but take action and do what it takes to get better.  It can be harder for some abled people to accept this because it doesn’t happen to them often but for many disabled people we are constantly in out of the hospital and it’s almost normal to us so needing surgery is not surprising!

I can turn a very negative situation positive- When you are disabled unfortunate things will happen in your life more than most people like you need multiple surgeries to keep your health from deteriorating  The timing isn’t always the best and sometimes I really don’t want to do go through another surgery but I don’t sit around moping about it for the next week like most people would and I usually can forget and get over it in a couple of hours. I am may not be happy when I need another surgery but I can learn to accept it rather quickly because I have learned to look for the positives in situations even when there doesn’t appear to be any.  This hasn’t always been easy but working on my mindset has helped get me through these difficult situations because even the smallest things can make the biggest difference.

It inspired me to write- Without my diagnosis, this blog would not exist because I would not have knowledge in Spina Bifida and could not write about the things I do from the perspective of someone living with the condition. I could have a different kind blog but it would be nothing like this and I probably wouldn’t have one because I wouldn’t need to. I started this blog because I got frustrated with being unable to find employment and wanted something to do during the day and if I didn’t have those difficulties I wouldn’t need to have a back plan or find ways to occupy my time during the day to prevent from getting bored.

My disability makes me exercise my creativity skills- The world we live in is not accessible for disabled people and if you think it is then don’t know tons of disabled people or live in a bubble because it is so far from being accessible. I am constantly battling inaccessibility because many abled people think accessibility ends at ramps and I often have to find new creative ways to make my life easier because there is always some kind of obstacle. Working out is not all black and white either because sometimes even the most basic traditional move that doesn’t seem like it should be that hard is actually impossible with Spina Bifida. Working out is more challenging when you are disabled but it one of my favorite things to do because it has taught me how I can modify traditional moves to best suit my needs and move my body. If I was not disabled I wouldn’t have these limitations and would likely be working out a completely different way and may not even have discovered my love for Pilates. There are some Pilates moves that I can’t do that I wish I could but I am happy I can do as much as I can because not everyone has this ability and if I didn’t have these challenges I wouldn’t be nearly as creative in my workouts because could do what everyone else was doing. I am not artistically creative but when it comes to coming up with creative ways to be accessible or modifying new workout moves I am pretty good at that because I have to be!

My disability makes me anxious-  I am anxious almost all the time to the point where I actually clench my teeth like really hard that it surprises me I don’t have more dental problems other than sensitive teeth.  Many disabled people don’t have jobs to worry about but most people also don’t have chronic conditions or health concerns to worry about daily so it may not be paying job but it’s like one and I sure wish I could get compensated for all that I have to deal with every day. If you don’t have a disability you may have some anxiety but when you are disabled it’s not uncommon for your anxiety to be worse because of your condition and the constant worrying about your health.

I am very self-motivated- When I have a vision or a goal I usually am able to get to that goal without having to constantly be reminded to take the desired steps to reach that goal. Some goals are harder for me to reach than they are for most people like making an income off my blog but I am a self-motivated person and when I have a goal it’s easy for me to motivate myself to take the desired steps to reach that goal. No one has to remind me to take the desired step to reach my goals because I am committed to doing what it takes. If I wasn’t disabled I would still be motivated to reach my goals but maybe not as much because some things would come easier to me and  I would be able to reach my goals a lot quicker than I can now so it wouldn’t be near as exciting when I reached them.

Advocacy is important to me- When you have chronic conditions advocating for your condition and spreading more awareness about it is pretty important to you because you live with it every day.  Many abled people don’t think twice about disability advocacy unless they know a disabled person because they don’t see ableism to the extent a disabled person does or understand how the world we live in is inaccessible for disabled people. Without my disability, I probably wouldn’t either and maybe doing a lot of things that many abled people do that hurt the disabled community and probably shouldn’t but don’t think twice about because they don’t realize it is hurtful towards disabled people. My disability has helped me become aware of all of the issues so I can advocate for them and make others without disabilities more aware so they can hopefully be more sensitive towards the disabled community.  Many people have stumbled across my blog and were unaware it was a disability so without my diagnosis I probably wouldn’t either and most certainly wouldn’t be advocating about it!

As a disabled person, I am pretty passionate about health fitness so if I wasn’t disabled maybe I would be a personal trainer or something in health in fitness or maybe I would have completely different interests  What my life would look if I wasn’t disabled remains a mystery and for all we know I could have become a nurse or gone to medical school which I would never do now because I can’t look at blood and I wouldn’t last an hour in nursing school! Thinking about everything my life would have been and moping about it isn’t important to me and moping about is just a waste of time and energy.  I struggle with more than most people do but without my disability, there are some experiences I would not have had and people I would never have met if I wasn’t disabled. Some days I get frustrated with my disability but it makes me who I am and without being diagnosed with Spina Bifida who knows what kind of person I would be or if you would even want to be around that person. My disability has many frustrations but it’s not all negative and I don’t wish my life was different because of these challenges but they only made me stronger. Don’t let make you feel ashamed of your disability because there is nothing wrong with being disabled and you should feel proud of the person you have become!  What personality traits do you have because of your disability and do you ever wonder what life would be like if you weren’t disabled?

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