No More Hiding

I’ve gotten some comments on being surprised about the things I share on this blog. Anyone who knows me in “real life”, knows I do not often talk about my disability. Until lately, I didn’t like people knowing how “crippled” I was.

I shared about my journey of moving to California (if you missed it, you can check it out here). Even on this journey, one of the hardest parts was having to admit how vulnerable I am.

I think people tend to hide their weaknesses. No one likes letting others see the weakest version of themselves. I relate to this but am learning that sometimes putting on a brave face isn’t always helpful. Most of my disability is obvious – you see the wheelchair, you go to shake my hand and realize I can’t reach all the way, you hug me and notice I don’t completely hug back. Obvious signs that I’m weaker than the average person.

But even I tried to hide things. It’s a running joke in my world that I always order chicken strips – no matter where we are, if they’re on the menu, they’re on my plate! Aside from my actual love of crispy chicken strips (and the fact that usually they come with fries which are the single most amazing food ever invented) I order them because they are easiest for me. No worry about cutting anything, individual light-weight pieces, no worry of not being able to use two hands to lift a sandwich to my mouth – the perfect “don’t notice exactly how crippled I am” meal.

It goes beyond food. Beverages – I used to always say “no thank you” when offered drinks. It actually started back in the days when I super monitored my drinking to assure I only had to go the bathroom 3 times a day – once in the morning, once in the afternoon, and at bed time – when I had care providers there to help. Then it turned into: What if the glass they give me is too heavy? What if the water bottle is too big? Will they judge me if I use my teeth to hold the bottle and drink the last little bit in my water bottle (or pop can – yes, I’m that talented)?

I also didn’t like letting people I already knew help me. I would rather have a stranger help me with personal cares than someone I was already friends with. I didn’t want people to look at me as the girl who needed help. My friends were my friends and those who helped me did so because they got paid – there was no mixing the two worlds.

I eventually began to make friends with some of my care providers (shh, it’s frowned upon), so drawing that line between the two worlds became harder. Little by little I mixed the worlds, but tried to keep as much as I could separated.

My parents were the only ones who helped me get in and out of bed throughout high school. I had a few people at the school who rotated helping me while I was at school, and very rarely I would stay at my aunt’s house for a night, but for the most part, it was only my parents. I still didn’t like completely letting them know my struggles. I never shared when I noticed myself getting weaker. I wanted to be treated like an adult, and when you need to be taken care of like a baby, it’s very hard to achieve that. So, after my first year of college and my first year of care providers, I stopped going home for over night breaks most of the time. I made day trips home, visited like an adult, and left so they didn’t have to help me with my cares. Last year was especially hard for me when I visited. My dad is a farmer – corn on the cob is our LIFE. For the first time ever, it was too difficult for me to eat it. I had to have it cut off the cob. I felt embarrassed. Embarrassed! Not frustrated at my disability – just embarrassed. In front of only my family.

When I moved to California, it was a 4-month long process to get care providers. My husband’s sisters offered to help with whatever we needed to get here, but I tried everything in my power to make it so I didn’t have to have them help me with personal cares. Eventually (half way into the trip) I realized I had no choice. I failed at arranging for any of my Minnesota care providers to come with me while I adjusted and my parents couldn’t stay. I gave in and asked one of his sisters if she could help. Night two in a new state and a new apartment, after crying basically every night on the way here, I let my guard down and accepted the help.

After the first night, I talked to my sister-in-law and was honest about why I dreaded letting her (and the rest of my in laws) help so much. I was afraid that they would see how “crippled” I was and wonder what their brother got himself into.

The exact opposite happened. Letting my guard down and allowing myself to show my weaknesses to them has made me closer to them. They understand my weaknesses and that makes me feel more comfortable to be myself around them.

I can’t explain how nice it is to just be given a plastic cup instead of a glass, or to have a straw to use without having to ask for it. Having people reach the extra few inches to shake my hand or to use their left hand knowing that that’s easier for me to reach out with. It’s these little things, and it’s because I finally decided I can share my story. All of it. No more being embarrassed – just realizing that sometimes you need to be vulnerable and that’s okay.

SMA is the disability I have, it is not who I am. Our struggles do not define us. Why did I feel so compelled to hide such a big part of me? This will definitely continue to be a work in progress to be completely open about my needs, but I know now that this is the way to connect with people.

I promise you’re not alone in whatever struggles you’re facing and I am positive that someone around you will be your support. You just have to let them in.

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  1. Jan Duscher

    Thanks for sharing your story. You are opening up our eyes to problems many of us never realized. You and your husband are wonderful examples of what can be accomplished by others with disabilities. You are a awesome young lady.

  2. Mary Klosterbuer

    Thank you so much for writing this and sharing it. It is very well done on both levels. The smile on your face shows the happiness inside you. I am proud of you and look forward to seeing what is next on your journey. Watch out world!

  3. Mary Goltz

    Oh my! What a beautiful and well written storydear Jenna! You hit the nail on the head in saying we try to hide our weaknesses!!! I have done that all of my life!!! Thank you for your honesty! I have always, always thought you were one of the most confident people in the world! I know others will read this and be helped by your HONESTY! Party on Jenna! I am sooooo proud of you! Blessings to you!!!

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