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Hi, friends. Today’s post is inspired by my peers who also have disabilities (using the term “inspired” loosely). I will address the hopelessness I have seen in recent times then provide some reflections on spirituality and suggestions of productive activities disabled people can do.

If you think most disabled people are like me–joyful despite the circumstances (not always but most of the time), sure of myself and my purpose in life, happy overall–I’m sad to say that you are mistaken.

This video is super relatable to wheelchair users and laugh-out-loud hilarious. The video, which highlights inaccessibility in cities, is linked to his name in the paragraph below.

Most disabled people with some level of notoriety, such as Zach Anner, share my positive outlook; it is truly inspirational to see a person with more obstacles than most people grabbing life by the horns. But there are so many other disabled people who are hopeless, bitter, and/or directionless.

I felt compelled to write this post after three disabled peers expressed their hopelessness on social media in a 1-2 week span.

Three Disheartening Exchanges

One person asked what other disabled people do with all their free time (many of us don’t work). I felt discouraged by the amount of responses advocating unproductive activities like “play video games” and “Netflix.” Sure, those things aren’t bad in moderation, but I can’t imagine sitting on a couch and consuming entertainment all day, every day.

Another stated that their job is the only reason they have to live and asked what others’ reasons to live were. That is depressing.

A third person, discouraged by the recent death of a disabled friend, mused whether they should “accept that they have a serious disability and give up on life.” As if coming to terms with a difficult situation automatically goes hand-in-hand with “giving up on life.”

The Purpose of Life

Having spiritual beliefs is a key factor in feeling that one’s life matters.

As a Christian, I believe the purpose of life is to spread the good news. God sent Jesus Christ as a human like you and me to understand our struggles and die to redeem humanity’s sins. We have been called by God to live into His love and grace by becoming the hands and feet of Jesus in the world–serving others, sharing God’s love, living in communion with God and our brothers and sisters so we can become better people.

The difference between my worldview and the ones I shared above seems abundantly clear to me; I actually know why I am alive. That knowledge sets my eyes on things outside of myself, which helps me deal with the tough stuff like self-pity.

Productive Things Disabled People Can Do

Aside from knowing why one’s life matters, my best advice for grappling with feelings of hopelessness is to engage in productive activities that give one a sense of accomplishment.

Start a Blog, YouTube Channel, Etc.

Produce content, build a following, interact with a community. Trust me when I say that if a person starts building their presence online, they will have PLENTY to keep them busy, yet it’s so rewarding to see hard work pay off.

Exercise

Disabled people tend to make excuses (and flounder in self-loathing), but the buck stops here because I use a wheelchair and still exercise. It doesn’t matter if the workout isn’t rigorous or if it seems pitiful to an able-bodied person. It doesn’t matter if one has access to a gym or can only do home workouts. Just do something! My body AND mind always feel better after a work-out!

Write/Draw/Craft/Etc.

Create something! It could be anything–a poem, a story, a drawing, a painting, a scrapbook, a collage, jewelry, graphic designs, Pinterest crafts, etc. Expressing one’s self through art is fun. Art gives people an outlet for their thoughts and feelings, takes up time, and leaves them with a final product, which induces the feeling of accomplishment.

Conclusion

When I took a health and wellness survey through my (not religiously affiliated) health insurance company, spiritual health comprised a significant portion of overall wellness. I’m beginning to see why spiritual beliefs or a lack thereof can influence a person’s mental state. Feeling hopeless comes easily if life has no real meaning.

Disregarding spirituality, the activities I listed can help with feelings of hopelessness because each of them requires a person to do something and reap some reward for it. In my experience, NOT accomplishing things is a primary contributor to feeling hopeless.

Thanks for reading! What do you think of what I said about spirituality and/or productive activities to boost one’s outlook on life? What would you add to my list of activities? Let me know in the comments.

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Hi, friends. An acquaintance of mine who also has FA posted an article on her blog about adjusting to her scooter. I related to her experiences so much that I immediately hatched the idea for this post.

In her post (available here), Kelly talks about her first time at the mall with her scooter. She explains that she struggled to navigate her new device around all the obstacles in stores. She spent the most of the trip lingering around the entrance of stores while her friend shopped, too frustrated to keep trying. At one point, she snapped on an employee who offered her assistance then burst into tears.

My eyes welled with tears as memories flashed through my mind–memories from the pre-wheelchair days when I, too, lingered on the outside.

I had this feeling an infinite number of times in high school and early college. There have been so many instances where I felt like a spectator of life because of my disability–sitting on the sidelines figuratively and/or literally. Here are two examples–

Left Out of my Own Trip

Near the end of my senior year in high school, a few friends and I went to the beach for a celebratory trip. [Don’t worry; my mom came, too.] When we all went out to dinner the first night, one of my friends ordered a crab sandwich; she was surprised to see the crab still shaped like a crab when the order arrived. So naturally, she wanted to throw the already-cooked crab back into the ocean…

The beach has always been tough for me to navigate because shifting sand + poor balance= disaster. Darkness is also hard (I have to watch my feet to take the correct steps). But everyone insisted on going over to the beach to throw the crab back after dinner.

All of my friends and my boyfriend left me at the house to play on the beach at night and have fun without me on my own senior trip.

Left Out of the Party

Fast forward a couple years to the early days of college–

Parties often presented obstacles; they do take place in the dark, after all. One night, I rode to one with a few friends. When we arrived and parked, my friends jumped out of the car and started walking across the uneven front yard in the dark. I awkwardly called out, “Hey, someone help me!” And one of them begrudgingly returned to walk arm-in-arm with me towards the backyard.

When we got back there, countless people stood in small circles, drinking and mingling. My friends immediately merged into the crowd and left me at the gate. I knew that I couldn’t walk around the backyard without falling, so I crept along the outside of the house and used that to make my way to the backdoor, attempting to appear nonchalant the whole time. I got inside and found my way to a couch.

For who-knows-how-long, I sat there alone. Some party, huh?

Final Thoughts

In both instances, a person might think my friends were jerks. I don’t think they were being cruel so much as just unempathetic. In both scenarios, a person could neglect to consider how I feel because they don’t know what I go through. Also, many people are just too busy thinking of themselves to think of others.

If you have a disabled friend or family member, go out of your way sometime to include them in an activity or trip. It is nice for a disabled person to not always feel ignored or like a burden!

I have tons of stories in my memory bank for various subjects, so let me know if you found this format entertaining!

Thanks for reading! Have you ever felt excluded? Do you share your kindness with a disabled friend? Let me know in the comments.

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Hi, friends. Do you ever have weird body temperature issues? Are you always cold or always hot? Do you have certain body parts that get very cold or very hot? Let’s discuss!

Overall Body Temperature

My overall body temperature is average, though my hands and face are usually cold. What’s odd about me is that my legs and feet are freezing cold almost all of the time, even with socks and pants. I have a neuromuscular condition (Friedreich’s Ataxia), so I guess my nerves have a tough time making the trip down to my toes.

My body seems to be used to this, so I rarely feel discomfort in my legs during the day. Actually, I’m often taken aback by how cold my calves feel when I reach down and touch them. Thank the Lord for space heaters! I have one at work that I sit right next to my legs.

How Body Temperature Issues Affect my Sleep

When I go to sleep, I have to bundle myself in a ton of covers because, when I’m in bed, the coldness of my legs bothers me tremendously. I then lie there for several minutes with my legs pressed together; I can’t fall asleep until they start warming up some. I yank up the covers in addition to draping a shirt over my face to get my face warm.

When I wake up (usually 4-5 hours later), my legs feel the opposite sensation–so warm that it’s uncomfortable, like they’re burning. After I use the bathroom, turn on my overhead fan, and come back to bed, I lie on top of the covers and allow the fan to cool down my legs. After a couple minutes, I flip over and let the fan cool off my calves. I usually crawl under the covers and fall back asleep afterwards, but if I can’t fall back asleep quickly, I end up in this unwinnable limbo where my legs (or my whole body during summer) are hot, then cold, then hot, then cold as I shift positions and pull covers off and on again.

Even when I fall right back asleep, my leg temperature dictates how the rest of the night goes. If my legs are pressed together instead of separated, I will wake up again sooner because my legs will heat back up faster.

Thanks for reading! Let me know about your experiences with body temperature issues in the comments below.

My Disability Experience: Falling

My Disability Experience: Fatigue

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Hi, friends. I have read at least 25 posts about New Year’s resolutions this year, and I feel inspired by your words. Of course, I should expect no less from the community of lovely, intelligent, honest people here.

In various ways, many of you made a poignant point–we should reassess how we think of New Year’s resolutions.

What Is Self-Improvement?

For most people, New Year’s resolutions revolve around self-improvement (or “bucket list” goals). The average list of resolutions might read:

  • Cut down on sugar
  • Eat more veggies
  • Start using my gym membership (lol)
  • Save up for a certain trip
  • Try a new hobby
  • Do more of (insert productive task like reading or cooking)

These are good goals. But in contemplating the idea of self-improvement, the question arises–how does one actually define self-improvement? Are there ways of improving the self that delve deeper or reach farther than “living my best life?”

Disabled Self-Improvement

Being disabled makes the concept of self-improvement interesting.

On the one hand, I’m thrown into a situation where I can fight or lie down in defeat. In practical terms, I can exercise frequently (despite how hard it is) and maintain muscle strength despite my deteriorating coordination, or I can decide to do nothing while using my condition as the justification, atrophying into an immobile sack of potatoes. My choice to fight requires a lot of self-discipline, which is the incentive needed for most resolutions. I already have that trait because of my long-term response to the cards I was dealt in life. [Obligatory side note that I do not always apply that trait to every area I should, haha.]

On the other hand, I must grapple with the fact that my condition will progress with time. Year after year, people look to make the next one bigger and better, while I know things will only get tougher year after year, despite the fact that I’m just 25 years old.

I’m in a weird spot–not needing one of the most common resolutions (Start Exercising) yet knowing self-improvement only goes so far for me. But here is where my faith plays into the picture and gives me a fresh perspective on the whole idea of New Year’s resolutions.

Christian Self-Improvement

Christian self-improvement is almost an oxymoron. Self-improvement is all about control, but discipleship in Christ means relinquishing control to walk in Jesus’s footsteps and trust God.

This year, I want to make resolutions that improve the self in a Christian sense with habits and activities that draw me closer to God or serve humanity, His beloved creations. In the Christian sense of self-improvement, my disability is irrelevant.

The trait of self-discipline I referenced earlier has also helped me form the habit of reading scripture consistently (though the magnetic force of the Word drawing me back again and again can’t be overestimated). Once again, a popular resolution–Read the Bible–doesn’t apply to me. I must push myself in other ways to seek the will and heart of God.

Here are a few of my 2019 resolutions so far:

  • Pray before getting out of bed in the morning
  • Don’t be afraid to talk about my faith with non-Christians
  • Donate $100 or more to a charity at least once
  • Speak to strangers more often
  • See the needs of people around me
  • Swallow sarcastic or hateful comments
  • Start compiling a resource page on my second NT re-read, perhaps listing predominant themes, connections between different books, note-worthy verses, etc.

Thanks for reading! Do you have some resolutions that you’d like to share or suggestions for my list? Let me know in the comments.

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Hi, friends. Ever heard the saying “if you want it done right, you have to do it yourself?” While most people wish they could control everything, Christians know that even when we create the illusion of control, God is still the creator and the judge.

Relinquishing control is hard enough for a “normal” person. But what if you depended on others for more things than not…for most things, in fact? As a handicapped person, I’ve progressively relinquished more and more control, and now, I rely on my family, boyfriend, etc. for almost everything. [I love and appreciate them dearly.]

Luckily, I have a big brain, and I can control what happens in it. I can read the books I want, maintain a blog about things I like, and grow in my personal faith journey. And though I can’t control my condition, I can fight to maintain some abilities via exercise, and I can decide whether to be bitter or inspiring as a wheelchair user.

What I can’t control is primarily physical. I can’t go home alone because someone needs to help me up the stairs. My coworkers help me get in and out of the building. I can’t take all the classes I want because I can’t get from point A to point B in X minutes.

That’s rough enough, but it’s the constant minutiae that grates on me worse. Let’s say I asked someone to get X out of my car, but they return and say it’s not there. Is it not in there? Or did they not really look? And that’s when I mourn my lack of independence. If I could just walk outside or downstairs to my car and look myself…so simple but such an ordeal. Many moments like that occur daily.

One thing we can all control is our acceptance or rejection of God. Whether you’re a king, a slave, a handicapped person, or somewhere in the middle, no man (or illness) can take away your salvation because it is God’s free gift. Salvation is more important and more contenting than anything…even the ability to walk. Love the Lord and love your neighbor because God is love! As for the rest of it…

Trust in the Lord with all your heart
    and lean not on your own understanding;
in all your ways submit to him,
    and he will make your paths straight. (Proverbs 3:5-6 NIV)

Thanks for reading!

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Hi, friends. I’ve started a series about the different aspects of my disability that I grapple with (My Disability Experience), but now I’m starting a series about social perceptions and other issues on disability. These posts may be controversial sometimes, especially ones that rebut certain attitudes of my disabled peers. I hope you’ll appreciate my down-to-earth perspective on things.

The Various Names for Disability

I noticed a social media post recently that harped on how harmful the term “handicapped” is when discussing accommodations and how we should replace it with the term “accessible.” The line of logic was that “accessible” has a different connotation from “handicapped.” Making a place “accessible” means enabling everyone to participate, while providing “handicapped” accommodations implies catering to a specific group who can’t do what everyone else can.

I understand the point–in a word, inclusiveness–but it strikes me as semantic. As an expert in English, I appreciate the effect of word choice; after all, the entire study of rhetoric is semantic, yet rhetoric affects everything from which cereal we buy to which president we elect. Even so, word choice isn’t the battle I’d spend time fighting in this context.

Some take it further and prefer the phrase “differently-abled” to disabled or handicapped. “Disabled” implies a lack in abilities, and “handicapped” implies a disadvantage, but “differently-abled” does not connote any lacking or deficit.

I’m fine with describing myself as disabled or handicapped because the fact of the matter is that I do lack some abilities that a healthy human should have. I am at a disadvantage in life; I am handicapped. I wouldn’t describe myself as differently-abled because I don’t possess abilities that a healthy human doesn’t have; I can’t fly or walk through walls.

I’m not totally obtuse. I know why people use the term “differently-abled;” it’s an attempt at empowerment. I can appreciate that because I’ve seen firsthand that pity–particularly self-pity–can completely destroy a disabled person’s motivation and joy. To be honest, though, I don’t know that a vocabulary shift on the personal or even societal level will be enough to address that.

What Really Matters–Actions

You know what affects me far more than words? Actions. Like when people park in the last handicapped spot because “they’ll only be a minute,” so I’m circling the lot in frustrated desperation, looking for a spot with room to get out my wheelchair… when people go in the only handicapped stall and browse their phone for ten minutes, so a line for the regular stalls forms beside me with women filing in and out of the bathroom as I still wait… when someone parks so far in the loading zone that I can’t access the ramp to the sidewalk, so I’ll probably have to flag down a stranger for help or roll a good distance to find another sidewalk ramp…

I get frustrated, but I have to remind myself that the problem isn’t necessarily that people are heartless towards the disabled. The real problem is visibility. The people in the above scenarios aren’t thinking “screw Lily and the wheelchair she rode in on;” they don’t think about handicapped people, period. My existence is not on their radar.

Cuttin’ a rug…yes, wheelchair users can do that!

I think the #1 solution for helping disabled people AND addressing both societal pity and self-pity is awareness. Disabled people like myself and allies like my readers need to spread the word. Disabled people are here, and we can and do lead fulfilling, successful lives! We do, however, need some accommodations!

There is more room to explore, but I’ll go ahead and wrap it up. Looking forward to writing more of these posts.

Call me handicapped, disabled, differently-abled, whatever…just know that I exist!

Thanks for reading! Has this post increased your awareness of handicapped needs and struggles? Let me know in the comments.

Also, can some photographer out there start specializing in disability, please?! There’s a stunning lack of results for tags like “handicapped,” “disabled,” “wheelchair,” etc…at least on Pixabay and Unsplash.

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