I find it so ironic that my last blog post is about progress towards my resolutions, one of which is to keep up with this blog better and now it’s been almost 6 months since I’ve posted…whoops!
But, I wanted my revival to be on a topic that’s honestly one that I try not to talk about often just because it’s when I feel the most vulnerable.
Does anyone else feel like your twenties has been a long and might I add strenuous journey of figuring out who you are, what your purpose is in life, and why God put you here? For some, I know that’s been straight forward and easy, I’m jealous. For others, including myself, not so much. As I try to figure this out, with much anxiety and impatience I might add, I’ve felt an urge to share the core of what has influenced who I am. I’m a pretty open book, and when people ask me about this, I’ve always been more than happy to share but, it’s usually not my first choice for conversation topics. Why? Because usually the response is, “I’m so sorry you deal with that,” or “You’re so strong and amazing.” No. Stop. I don’t want pity, it makes me uncomfortable and honestly, if you were in my shoes (no pun intended) you’d probably feel the same way. Maybe you do with your situation!
What I’ve struggled with and spent a lot of time debating is sharing about my walking issue. The reason I’ve debated posting about this since the infancy stages of my blog is because everyone has something or deals with something, it just might not be able to be seen physically like mine. It’s not that I don’t want people to know, I just feel like there are people out there that deal with much worse, and I’m so lucky to only walk funny. While I’ve worked extremely hard to not let it to define me, it does explain and define a lot my behaviors, feelings, and emotions. Which is why I feel the need to share, so others and really my own self, can start to understand why I am the way I am.
DISCLAIMER: I am not looking for pity, nor do I want it, so please don’t take it like that or give it to me because I will not accept it. I also am not looking for words of affirmation, in this case, it makes me feel uncomfortable!
As I’ve been thinking about it and while I don’t necessarily love the fact that when people describe me I’m sure the go-to answer is, “Katie, ya know the girl that walks funny,” maybe my “purpose” is to try and enlighten those who are ignorant about my condition or what someone with a physical disability deals with; to shed light on how it plays into who someone is; who I am. Quick side note, if you’ve ever described me as the girl who walks funny or will describe me as that, that’s OKAY, I’m okay with it, I won’t be mad whatsoever. I’m guilty of associating physical features too, it’s human nature…and it’s the truth, I do walk funny! If you’re like me, you’re not saying it with any ill intentions, trying to call out a flaw, be racist, etc., simply to help differentiate the person you’re talking about. Plus how descriptive is, “Katie, the one with brown hair and brown eyes,” that really narrows it down…
To give some context, I did not always walk this way, in fact, I was a very active and a normal kid until I was seven. Hereditary Spastic Paraplegia (HSP) is the official diagnosis I was given back in 2001 when this whole shebang started. Originally, when my mom took me to the orthopedist for some shoe inserts, they thought it was a brain or spine tumor. Thankfully, it was not! The short version of the definition of HSP is that it’s an inherited mutation in the genes that causes progressive weakness and spasticity, otherwise known as stiffness, in the legs. English, please? It causes the muscles in my legs to be tight and stiff causing me to walk the way I do. Even in the HSP community, I’m very lucky and more of a “milder” case in that given the weakness and stiffness in my legs, I’m still able to do pretty much anything. The weird thing with me and my disorder is the inherited aspect. They don’t know what caused this to happen or why. Doctors haven’t been able to trace any inheritance of the gene seeing as both parents have submitted their genes for testing as well. So pretty much, you can call me a scientific mystery! This was validated even more earlier this year.
When I got my genes tested a couple years ago they did notice a mutation in one of them. When they looked at the “database of genes” (very formal term here) they couldn’t find it or anyone who also had a mutation in this gene. Whether it was related to HSP or not, they didn’t know and it was kind of just decided to let it go. At the start of 2019 my geneticist called me and asked to come see her. I remember she walked in and goes “Katie is famous.” Flattering, I know right?! What we then learned was that four others in the U.S. and five others in other countries had been identified with this same mutation and had similar side-effects of HSP. Read: As of right now, I am 1 of 10 people in the world with this known gene mutation and now considered part of a new disorder under HSP. So, what does this mean? We still don’t really know but my genes are somewhere in Europe being studied and used to determine potential treatments. HOW COOL IS THAT. I may never see any of those treatments because for medications to get approved by the FDA it takes like 20 years, but to know that I’m at the start of something that could help others is amazing!
So, how does this all play into shaping who I am and why I am the way I am?
I never want to feel like or be seen as a burden. Going hand-in-hand with that, I have a need to prove I’m self sufficient. My parents, brothers, extended family and friends have NEVER made me feel like a burden. For that, I am so, so thankful. But I’m not blind to the fact how hard I’m sure it’s been on them. For my family, simply the medical expenses and insurance pains that I’m now soooo fortunately getting to experience being on my own insurance. Different topic for another day. Or my friends who have to walk slower or take longer, alternate routes when walking places because I have a hard time going down stairs without railings or really steep hills. This definitely plays into why I put everyone else’s needs above my own and put so much effort into those I care about. To show my appreciation for all the little things they do, without complaint, to accommodate me. It’s also why I rarely ask for help.
Work ethic is another major area of myself that has been developed because of my walking. While I can do pretty much anything others can do, I’d be lying if I said I could do it with as much ease. Simple things like walking down stairs, stepping over something, doing a proper lunge, running, all take a lot more effort and concentration than the average person. It’s taught me a lot about adaptation as well. This is something that has translated into pretty much every part of my life, especially in the workplace and relationships. It’s pretty close to impossible for me to not give 110%, always leading to many unnecessary late nights at the office to finish a task or going above and beyond to make someone feel special.
I remember when I was young I wasn’t really understanding why my walking thing was happening to me and my dad told to me, “God can’t give you anything you can’t handle.” This is so true. As I mentioned, I’ve realized how lucky I am to only walk a little funny compared to others which has really fed my zest for life and played into the socialite I am. Part of my reality is that as I get older my mobility will become worse and worse. I already struggle with arthritis in my feet, knee pain due to a torn meniscus and continually sprained ankles. I don’t say this looking for pity, I say it as it’s my reality and it’s just something you have to suck up and deal with. Have I mentioned it could be so much worse?! Anyways, it wasn’t until I started writing this post that I really looked into HSP and it was disheartening to read that I’ll likely end up with some sort of walking assistance. But, not only does that motivate me to stay in shape, it’s what fuels me wanting to constantly be doing something and exploring new things with the people I love! Life’s short and nothing is promised. For me, being around others, even if it’s just sitting on the couch watching a movie, that’s what fuels my energy. I’m also likely the most mobile I will be now, so I need to take advantage!
I would be lying to say that I haven’t struggled with my walking. Going through life as a “scientific mystery” where doctors can’t even explain why you walk the way you do does make you question your own self-understanding. Trying to find confidence with a big piece of the puzzle missing is hard; more so in my twenties than when I was younger. There’s been plenty of times that I’ve been walking late at night, completely sober, and someone has said, “That girl is so drunk,” or someone at a bar hasn’t let me in because they thought I was hammered. I remember in sixth grade someone asked me why I walked like a monkey and then proceeded to put their arms out and “walk like a monkey”. Sixth grade, and I still remember that comment. Words hurt. If there’s anything you can learn is just be kind. If you don’t have anything nice to say, don’t say it at all! Plus, who doesn’t struggle at some point?
I’m also not blind to the stares. Friends, please do me a HUGE favor, something my parents always taught me: Teach your kids, yourselves, your friends, NOT TO STARE. It’s so unbelievably rude. Whether it’s intended to be or not. I know people just aren’t used to seeing it but when you watch someone turn their head to stare at you because you are different, is hurtful. Again, I’m not looking for pity. I share this to try and make some positive influence. Instead, ask them if they need help or just for one second put yourself in their shoes and think how you would feel if someone stared at you for something you couldn’t control. As I mentioned, my issue is physical, others’ aren’t. You don’t know what that person is going through.
Lastly, is control. Because I can’t control my walking, I feel the need to try and control other parts of my life. This is definitely an area I am trying to grow in, by learning there are a lot of other things in my life I can’t control besides my walking, and I need to learn to trust God just like I have with my walking stuff.
For those that have stuck with me through this long post, thank you. To my family and friends that have never made me feel different and taught to me to laugh at myself when I fall (literally, I fall all the time), words cannot express my gratitude.
I hope that this can influence some positivity when it comes to jumping to conclusions or stopping someone from staring.
Again, if you give me pity, or anything along the lines of it, I will be upset and likely our friendship will end. I love my life and accept my walking, and all that comes with it.