“Life isn’t fair.”  Most of us have heard that saying more than once in life.  Whether it’s your favorite team losing a game or learning devastating news about a loved one, hearing someone say “life isn’t fair” in those situations often isn’t what we like to hear.  As I’ve said in previous entries, comparing ourselves to one another is human nature.  Most times, when we compare ourselves, we are invoking pity on oneself over our circumstances.   It’s during these times that life truly doesn’t seem fair.  For people with disabilities and health conditions, self pity is something we vastly try to avoid, but, sometimes, at least for myself, I can’t.

I admit, the last few months have been pretty rough.  Many issues relating to having a disability have surfaced, and I’ve been faced with a dose of reality.  My care situation continues to be an unbelievable struggle.  I had four people quit in one week.  Two of the people were brand-new hires and didn’t show up for training on multiple occasions.  I try to give people a few chances, but, when it comes down to it, I need responsible people because I literally depend on them to live.  Due to these people quitting, I’m left with a ton of open shifts.  Thank goodness my parents are retired because they’ve been my savior.  I’ve had to go to their house for a few days and they’ve also come up here (it’s about a half hour drive) multiple days per week to help me.  I also often go without a lunch shift (which includes using the restroom).  This situation isn’t at all what I want.  I absolutely hate relying on my parents.  I’m burdening them and their plans.  They, of course say, it’s ok, but it’s not!  People tell me that I can’t take it personally when people no show or quit, but it’s almost impossible not to under these circumstances.

Due to these care issues, discussions about my future have started.  Quite frankly, it’s pretty depressing.   I’m a very realistic person, but I guess I’m also a dreamer.  While I know that we need to come up with a better plan or solution, in the back of my mind, I ponder what if I could meet that special person who I could spend the rest of my life with.  Everything from around the clock care, to group homes, to assisted living have been brought up.  I understand these are the realistic options for my situation, but, honestly, it breaks my heart that we have to even discuss these options for me.  Boastfully, I take a lot of pride in the independence I do have.  Even though, deep down I understand assisted living or a nursing home will probably be reality for me at some point down the road, I’m only 33 years old.  I don’t want that for myself.  Selfishly, I think I deserve better.

Though definitely most prevalent, cares aren’t the only issues I’ve had.  Earlier this summer, I saw a gastrointestinal specialist to see if there was anything that could be done to prevent more stomach issues.  I guess I was hoping for some magical solution; instead, I was basically told nothing could be done and to probably expect more problems.  Unfortunately, due to cerebral palsy, it’s just the way my body is.  Additionally, I had been dealing with another medical issue for over six months; I finally saw a specialist for it last month and learned, though it can improve with treatment, it’ll likely never completely go away because of my condition.  Thankfully, it’s very minor and something I can easily live with, but it’s just one more thing to deal with.

Additionally, I’ve been dealing with some social issues due to my physical limitations as well.  People make plans and try to include everybody, but don’t realize that the plans aren’t realistic for a person in with my circumstances.  While I know people never mean to exclude me, it’s very frustrating when I’m not able to participate in things due to my physical limitations.  Usually I’m pretty good at seeing happiness through other people’s eyes, but, in some situations, it’s almost impossible to do.  There are just some things that I desperately wish I could do, and when people I love get to do them, sometimes, it’s just hard. 

 How do I deal with self-pity and disappointment?  Unlike most people my age, I don’t have a significant other to vent to or to comfort me.  This often poses a problem because often, besides a few close family members and friends, the only other outlet I have is social media.  I often irrationally post something on Facebook out of frustration.  Far too many times I’ve heard it from my mom because family members have called her asking what’s wrong with me.   I’ve gotten better at refraining from posting, but, admittedly, I’m not perfect.  Putting my feelings on Facebook allows me to talk with friends who have similar situations.  Depending on what the situation is, I often just message people now instead of posting.

Do I want pity?  Absolutely not!  I certainly admit, though, there have been far too many times lately when I felt hopeless and sorry for myself.  It really does no good, but it’s human nature to.  It’s during those difficult times that I rely on my wonderful family and friends to help me through.  I also think people with disabilities have a stubborn side to them, and, often, I think that’s what helps us persevere through the challenges life throws at us! 

***The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.