Dealing with a disability is always hard in some ways. But surviving winter seems to take it all to another plain of misery (partially saying that for dramatic flair, but partially serious).
First off, the cold exasperates achy joints. Cold AND rainy? Ugh! My seven-year-old knee injury isn’t letting go of her grudge any time soon. UN-limber limbs and balance issues go together like peanut butter and mustard.
Using a wheelchair obviously means I get less blood circulation throughout my body. While most people walk and stand frequently, my doing so is restricted to transfers (like getting out of my chair and pivoting to sit on the toilet seat) and the 3ish (give or take) times a week I work out and/or squeeze in some assisted walking practice. So, whether I’m freezing my butt off outside or sitting inside, still colder than I’d prefer to be (don’t wanna make the electricity bill too high), I’m lacking the warmth that comes with full-body movement. If I’m sitting outside in the winter while the wind is blowing hard, I’m done. Thank goodness my fiancee’s mom gave me a space heater for Christmas so I can now get more toasty when I’m relaxing at home.
Due to what I mentioned above, and my nerve/blood/etc.’s general inability to travel efficiently to the furthest corners of my body, my calves are literally always cold. Even on a hot summer day, I’ll reach down to touch them, and they’re moist and clammy…yet still cool! But their perpetual iciness reaches new heights in the winter. The coldness in my calves seems to actually radiate and spread into my bones; I wonder at times if they might, on some chilly day, shrivel up and detach from my body.
Sometimes lately, I have this fun, new FA symptom where I’ll be so cold while climbing in bed that my leg muscles tense up uncontrollably. I have to pull on the covers and wait a few seconds for my body to warm up before my muscles relax–then, I can adjust myself into a comfortable position.
And let’s not forget the dreaded shower. It feels sooo nice inside, but opening the door/curtain and feeling that blast of chilly air collide with my damp, warm skin…it’s just cruel.
Needless to say, my plants and I are anxiously awaiting Spring!
What’s your attitude towards and experience with cold weather? Let me know in the comments, and thanks for reading!
P.S. Here’s my latest vid. Please watch if you’re intrigued by the title/thumbnail; like (helps with the algorithm) and subscribe if you enjoy it. Thank you so much for your support! ♥
For most of my life, I didn’t care about organization and cleanliness. In fact, when I come across an old ‘bathroom mirror selfie,’ I cringe at the disarray on the shelves behind me. I was the typical teenager whose room was usually a mess, and wiping dust off things? Forget it! Every surface was cluttered. The room next to mine, a sort of den/bonus room, was a catch-all for anything and everything. My walk-in closet bordered on a disaster zone. Christmas gifts still laid haphazardly near where we display our tree by the time I was wearing shorts and tank tops again.
My childish habits carried on to the beginning of adulthood, and at age 19, living away from my parents for the first time, I hadn’t changed much. My roommate was on my same basic maturity level. Living without supervision, my irresponsibility extended further. Not only was my room still a wreck…but we would throw parties and awake the next morning to sticky counters, half-eaten food on the kitchen table, and a recycle bin overflowing with beer bottles/cans. It wasn’t unusual to run out of toilet paper and have to use napkins on our nether regions for three days. We two ladies had a place that exuded “bachelor pad” vibes.
Fast forward through moving back home, moving out again, moving back home again–I had gotten somewhat better with age, though not drastically. I did go through my bathroom shelves in a wild frenzy one day, throwing away two trash bags of old hair and skin products. I rearranged the bonus room a bit and went through some of the useless junk lying around. I got rid of unworn clothes in my jam-packed closet.
But my mindset has dramatically shifted in the last 2ish years. Maturity/priorities, the pandemic, and my disability each played a role.
See, through my teen years, my initial college years, and the back-and-forth moves, I was still walking, though I started using a walker towards the end of that period. I transitioned to a wheelchair in mid-2016 (age 23), but I was still pretty nimble and was hyper focused on my English studies. In Dec. 2017, I graduated with a Bachelor of Arts in English.
In the last 5-10 years, a lot has changed. I’m 27-years-old as I write this. I’ve gone from years of constant preoccupation with homework, classes, tests, actually getting around campus (ugh) to relative freedom to order my time. Could I spend all day every day watching Netflix (aside from the handful of hours I work for the newspaper each week)? Sure. But I wouldn’t be happy. So I do a gajillion things. It’s still nice to do things because I want to, rather than because I have to (I don’t miss ya, big assignment deadlines!).
Being closer to my 30’s than to high school, my maturity has increased. I’ve noticed, though, that plenty of adults are messy, so I guess age and organization skills aren’t directly correlated for everyone. But it seems to be for me. Since my priorities have shifted from “partying/being cool/chilling with friends” (18-21) to “making straight A’s and being consumed by reading books and writing essays” (21-24) to “doing what I want” (24-27), I’ve had the mental space to self-reflect and care about my surroundings. The pandemic has of course forced me to stay home more, giving me extra time and motivating me to make my nest a happy place.
But my disability might’ve been the biggest factor–subconciously. As the years and my condition progress, I gradually lose abilities and freedoms. Okay, that sounds really depressing, so I’ll just note that thanks to my constant workouts with a trainers, my insistence on regular walking practice at the gym and at home, and God helping me be strong and driven, I’m doing fantastically under the circumstances.
As you lose more and more control of your health (or something else in your life), you gain a greater appreciation for what you can control. I may have no power over my coordination, but I can control my muscle strength–so I do. I may be unable to go out and work 99% of full-time jobs (due to disability but even moreso thanks to fatigue), but I can do productive things from home at my own pace–so I do. I may have no control over most things in my life and in the world, but I can create a clean, clutter-free space for myself–so I do.
What are your cleaning and organizational habits? What is it in your life that you can or can’t control? Let me know in the comments, and thanks for reading!
P.S. Here’s my latest vid. Please watch if you’re interested and like/subscribe if you enjoy it. Thanks for your support. ♥♥
Just this week, I’ve heard of two instances where people called out media companies for portrayals that marginalize the disabled. The game Assassin’s Creed Valhalla has received backlash for using the term “disfigured” to describe a burn victim’s face. The film Witches has been criticized because the main antagonist, a witch, has hands that resemble those of a person with Ectrodactylyl or “split hands.” Many people might ask, Seriously?! We’re going after FANTASY now? What a joke. Well, I’d like to share my two cents…and, hopefully, you won’t think I’m a milk sop by the end. 😉
BTW, I got this idea from a great post by Caz at Invisibly Me, who writes about invisible chronic illnesses. Her article mostly raises questions, and as I perused the opinions of other commenters and left my own, I decided this would make a good post!
Before we start: Google search them if you don’t believe me, but most articles on this game and film are unrelated to disability. As you read, remember that these criticisms don’t override the generally positive fan reception to these properties. [In other words, we don’t need to feel sorry for them–they are doing just fine, haha.]
Why people are reacting negatively to this media…or to those making the complaints
People point out these issues because they perpetuate stigma against those who are handicapped or somehow “different” (ex: missing limbs, a humped back, extreme scars or birthmarks–you get the picture). Up to the last half-century or so, many disabled people were hidden away and disregarded. Thanks to general societal progression and also the internet (#1 way to spread awareness), we better understand access and inclusion and are learning to view the disabled as autonomous human beings worthy of respect and the pursuit of happiness. Thus, media which excludes or marginalizes the disabled (along with other groups) is getting called out more and more.
But, on the flip side, many feel this is getting out of hand. Cancel culture and political correctness are often unforgiving and even unnuanced. As some say, we’re “offended by everything” now.
“Othering” villains and the origin/meaning of art
In the comment section of Caz’s post, one blogger said, “Stories have always ‘othered’ villains, and it likely won’t stop anytime soon.” This is accurate and problematic.
Many argue that the fantasy realm should be off limits to PC meddling. For God’s sake, it’s a fictional story with totally made-up characters! Consider this: whatever the art form or setting, it’s exclusively made by human beings. It’s worth reflecting on why we create the art we do–the conclusions could be telling.
The observation that villians have always been “othered” puts this subject in better perspective. Though we now see it critiqued here and there, the issue actually spans throughout history and across cultures. Art, from an overarching standpoint, reflects the human experience. Despite our infinitely varied circumstances, we all recognize love, fear, stress, joy, awe, etc. Hero vs. villain stories are practically foundational to storytelling. There are a few hero archetypes, but they are generally brave (or become brave); this reflects what most people strive/wish to be–someone with courage to stand for justice, help others, and do the right thing. So, what does the “othered” villian archetype represent? Perhaps that we subconciously fear and mistrust people who aren’t like us?
Being a wheelchair user greatly influences my opinions here. It’s literally a common phenomenon in the FA community for patients to resist assistice devices through countless falls, public humiliation, crippling self-conciousness, etc. Displaying a physical marker of disability is that stigmatized. I know someone who barely survived a house fire as a child, and she struggled with immeasurable insecurity for her entire youth–all because she looked “different.”
A couple concessions: Putting parameters around art, even well-intentioned ones, can stifle creativity. It’s also worth mentioning that, for many “othered” villains, the “othering” heavily contributes to their character’s nefarious motives.
That said, I don’t think it’s petty to raise these criticisms; in fact, I assert it’s important. It’s not morally wrong to enjoy Assassin’s Creed Valhalla or Witches or other problematic depictions of the disabled or “different.” But let’s at least discuss it. Going further, let’s analyze our own subconcious biases and reflect on why we make or enjoy the art we do. Going even further, let’s contemplate what art in general says about its creators.
Thanks for reading! What’s your two cents? Let me know in the comments. BTW, I may or may not take a break for Thanksgiving week (depends how it goes), so if I don’t post next week–Happy Thanksgiving! 🙂 God bless you all.
A few months back, I wrote a post on FB that involved having empathy for others. Someone initiated a bad faith argument with me and provided a grammar lesson on the difference between sympathy and empathy. If you haven’t experienced something yourself, all you can feel is sympathy; empathy indicates you have also been through it. Though I knew these technical definitions already, I have noticed a shift over the years where people now gravitate to the word empathy either way. I have some thoughts on the topic to share.
Why is empathy better than sympathy?
The word “sympathy” is closely aligned with “pity,” and most people don’t want to be pitied. Perhaps the connotation hasn’t always been negative, but language changes, and pity now evokes ideas of condescension and superiority. “I feel sorry for you” is practically an intentionally insulting phrase at this point. As a wheelchair user, this hits close to home. I don’t want people to figuratively look down their noses at me (even if they have to literally…haha).
Nowadays, people use empathy not just for circumstances they have experienced but for those which they try to understand. If a person empathizes with me, it means they are attempting to imagine my struggles and put themselves in my shoes, even if they will never truly get it. Clearly, most of us would rather people try to relate to us than just pity us.
In this light, empathy is more humanizing than sympathy. Also, empathy can drive meaningful change. If someone sympathizes with me, it means they feel sad for me that I have to grapple with Friedreich’s Ataxia. But if they empathize with me, it hopefully means they will think more deeply about my access and mobility struggles. If someone puts themselves in my shoes, they could take note of things around them that aren’t handicap-friendly and perhaps advocate change.
Language shifts–and that’s okay
I find it nonsensical when people gatekeep definitions. The fact is, language is an ever-evolving tool for humans to communicate with each other. There is no objective basis for definitions; rather, context and popular use determine meaning. I’m an avid reader of classic novels, and what I’m saying is obvious if you compare common vernacular from different historical periods.
I think the shift comes from an increased understanding of the nuance around compassion vs. respect. We’ve come to understand that people with illnesses or other marginalizing qualities are not “less than.” One hundred years ago, people like me were excluded from the public arena and not seen as dignified, autonomous adults. If the disabled were regarded more like sick puppies than actual human beings, how could people feel anything but pity?
As I type this, I’m having an epiphany.
In the past, many groups of people were literally, even scientifically regarded as “less than”: women, black and brown people, disabled people, etc. I assert that the real underlying reason for the move from “sympathy” to “empathy” is our developing ability to view all people as equally worthy of life and liberty. Think about it: we can’t empathize with people unless we view them as people. Now , we can meet a person who’s different from us or who faces hardships and acknowledge their struggles, discrimination, etc. yet also fully affirm their humanity.
A warning to still tread carefully
Though it’s fantastic if we can imagine what others go through day in and day out, we ought to beware of trivializing others’ experiences. For instance, it feels jarring if I complain about disability-related struggles, and an able-bodied or temporarily disabled person casually throws out a response like, “I completely understand.” Uh, do what, now? You “completely understand” years of extreme insecurity for “walking funny,” physical and emotional pain from falls and progression, coming to grips with ever-narrowing options for the future, and an encyclopedia worth more? It’s not cool to minimize others’ struggles.
For this reason, I prefer to write “try to” in front of the word “empathize.” Though I attempt to put myselves in the shoes of those who aren’t financially secure…who live with constant fear or stress or sadness…who don’t have people to turn to when they need help…who deal with all kinds of issues I don’t have to face, I must stay humble and remember that I will never really relate…just as an impoverished or depressed or lonely person might never relate to having a physical handicap like mine. But if we can TRY to empathize with each other, perhaps we could help each other. ♥
Thanks for reading! What’s your opinion on empathy vs. symmpathy? Let me know in the comments.
P.S. Click on the photo to see me featured in a blog post about the best disability blogs. 🙂
Hey, gang. So I noticed my last disability post was at the beginning of August (eek!), but I’m not exactly brimming with ideas in that arena right now–probably because going out less means encountering less awkward situations, rude comments, access struggles, and other things that provide inspo for these posts. Also, the stress of things happening in America is weighing me down; I’m tryin’ to abide in Jesus, but still… After some contemplation, I think it’ll make for a fun post if I list out some “handicapped probs.”
But first, a brief life update regarding my disability:I’m going to complete my annual appointment to track my FA progression virtually this year. With COVID cases spiking once again, I’m not volunteering to travel across the country if it’s not completely crucial. Reminder–with Friedreich’s Ataxia comes cardiomyopathy aka heart issues. Consider my risk level “sky high.”
Also, I’ve started working out with my trainer in a gym again. Don’t worry, it’s a small-ish apartment complex gym; hardly anyone uses it. For the last six months, we were cooped up in his living room with some dumbbells and a few basic workout tools. Now, I’m readjusting to using machines again. For most of 2020, we’ve had limited space for walking practice, so my ability to do so was decreasing rapidly. I will resist the loss of my “land legs” as long as I have an inkling of power to fight back, so I recently found a way to practice at home. While my brother walks behind and lightly holds my sides, I push my rollator walker a few laps around the room, a basket of dumbbells propped in the seat to stabilize it. Well, when we got back in the gym, my trainer started to have me walk on the treadmill!
Initially, it was really challenging and also intimidating. I probably haven’t been on one in five years, seriously. Not sure why my trainer started going that route; maybe he noticed my decline and wanted to bump the walking practice to another level when we got the chance. Unbelievably, I’m doing it, I’m really doing it!Between the treadmill and walker, I’m getting more regular walking practice than I have in years.
And now that you know what’s happening with me and my disabled life, it’s time for the list. Once I began to write these out, I realized this could actually be a themed series. Did I somehow come up with a brilliant idea while going for something easy? Wow! Anyways, enjoy my attempt at humor through these handicapped probs, public restroom edition:
When an object blocks the bathroom door from opening all the way (Y’all realize the accessibility inside is irrelevant if I can’t enter, right?! )
When the bathroom door weighs two tons (perhaps the only point where little old ladies, small children, and people like me share a grievance)
When non-handicapped people use the handicapped stall, esp. if they’re using it as a phone booth (I’ll just be sitting here busting my gut while you hash out all your friend’s relationship issues in one call.)
When the toilet in the handicapped stall is clogged (options: hold my poop or poop on top of a stranger’s poop)
When the toilet seat in the handicapped stall is loose (warning: you might go careening off and/or pinch that area between your butt and the back of your thighs…ouch!)
When you can’t use both hands to take your pants on and off (Comfortable, classic, good ol’ jeans…you are my favorite pain-in-the-a**)
When you have to lay your arms on the counter for your hands to reach the sink (and your arms inevitably touch the water others leave on the counter…eww)
When the paper towels or hand dryer is across the room from the sink (so you inevitably have to get everything wet to get your hands dry…)
When the bathroom mirror is taller than you are in your chair (I need to know if my eyebrows are still on fleek, people!)
When the door opens IN to exit (making it nearly impossible to get out without putting a vice grip on the germy door handle, an especially appealing prospect in a pandemic)
When you have to go through this list more than once if out more than a few hours (Darn you, lack of bladder control!)
Remember: God and a sense of humor will get you through life’s whims and woes. 😉
Thanks for reading! Do you have any suggestions for future editions of handicapped probs? Have you found ways to be active lately? Let me know in the comments.
P.S. Believe it or not, I started writing this post before receiving the news… Declan Lockheed, a writer for the blog run by Twinkl, an educational resource site, reached out via email. His team and he want to include Retrospective Lily in a post spotlighting great disability bloggers to celebrate International Day of Disabled Persons. He was so nice and said they appreciated my honest and positive takes + my spreading FA awareness. I’ve never received an honor like this before! Yay! Details to come. 🙂
The beach is the quitessential vacation spot–beautiful views, warm weather with a cool breeze, total relaxation. Being a wheelchair user (or having mobility issues) adds some complication to the picture-perfect-paradise. I’d like to discuss some of these difficulties to spread awareness and, near the end, provide ideas on advocating for disabled people to make our beach trips more enjoyable.
Most beach houses are built on stilts and/or feature a long staircase to reach the first floor. This is understandable since hurricanes bring a lot of water and sand into people’s yards. Unfortunately, this means that most beach houses are inaccessible from the get-go. Luckily, many wheelchair users like myself have family members, friends, or a caregiver to carry or help us–not ideal, but hey, gotta get there somehow. Knowing the rigamarole it’ll require makes it less appealing to leave the house for visiting beach shops, eating out, etc. As disability awareness spreads, more and more beach homes and condos are being built with elevators, thank goodness!
Crossing over to the shore is also tough. Many beach access ramps are simply a set of stairs, often without a handrail, going over or down a dune. I imagine those who are getting old or have knee/ankle/etc. issues struggle with this also. Thankfully, many beaches have handicap accessible ramps now. Though it can be a bit irritating to drive out of the way to reach them, I’m still grateful they exist. Ya know what’s annoying, though? Not all, but some beach access points designated to handicapped people still require one step up/down off a platform to get to the actual ramp. Umm…do city officials think my chair can just hop up or down for one step?
Once I roll down the ramp, someone will have to carry me to our umbrella-and-chairs set-up because wheelchairs and sand do not mix. At all. A wheelchair will not roll in sand, period. The inability to enjoy any mobility on the beach is the worst part–no walks on the beach, no searching for seashells, no approaching the water just to wet my feet. Ugh. Having no control or independence may be fine for a pet or a baby, but as an autonomous adult, it’s incredibly disheartening and frustrating. Last time I went to the beach, though, we borrowed a wheelchair with big rubber wheels from the town’s police department. Though it was still a bit tough to navigate, it enabled me to “walk on the beach” for the first time in who-knows-when. Talk about a joyous discovery!
Also worth noting: swimming in the ocean is basically a no-go. Between the shifting floorboard and currents pulling every which way at random (and threatening to yank me down every moment, even with someone on each side), getting past the breakers to reach the deeper, calmer part is nearly impossible. This doesn’t bother me as much as everything else, but perhaps that’s a result of being so accustomed to the disabled life. Envisioning myself walking into the ocean with no balance issues and “jumping the waves” as I did in my childhood feels like a distant dream. Sorry if that was super sad. Life can’t always be rainbows and butterflies, unfortunately.
So, now you know how physical disabiliy can put some dampers on an the idyllic beach get-away. If you would like to advocate for disabled people (or if you personally face these obstacles), here are a couple things you can do at your beach of choice:
Find out if they’ve built any public handicap-accessible beach ramps. If not, request that the town build them (I’d contact town hall). If there are, great! But if you get a chance, try out the ramp and ensure they didn’t sneak in some steps.
Inquire with the town (I’d try town hall, the visitor center, and/or the police department) whether they have a beach chair for people to borrow. If not, explain to them why it’s necessary and how difficult it is for handicapped people to move around in sand.
There’s not much we can do about inaccessible housing and rough waves…but just having a ramp and a beach chair make a world of difference!
Thanks for reading! Do you or does anyone you know struggle with the sand, the ocean, the stairs, etc. at the beach? On behalf of disabled people, would you commit to checking on a ramp and a beach chair next time you vacation at one? Let me know in the comments!
No matter how many “self-improvement” products are created, marketed, and sold, we still have plenty to feel self-conscious about–our bodies, our skin, our hair, all that fun stuff. So many skincare products, hygiene products, hair products, makeup products…so many diets, weight loss supplements, specially made foods…even dime-a-dozen gyms that feel like the fitness version of drive-thrus (looking at you, Planet Fitness)… Despite it all, we peruse Instagram and watch TV commercials that bombard us with Facetune, Photoshop, etc. and instantly remember our flaws.
As a human being and especially a woman, I relate to feelings of inferiority born from comparison. I shell out big bucks for indulgent skincare products and usually feel self-assured in my not-perfect-but-relatively-clear face. Then, I see a beautiful girl upload a selfie with glowing skin…AND perfectly striking eyebrows…AND long, voluminous eyelashes…AND AND AND. I’m reminded that, despite my nice skin, I’m not as fabulous as “the other girls” on several fronts. I exercise regularly and stay pretty toned, but since God blessed me with a short torso and long legs, having some amount of belly is basically inevitable. Still, I put in the work to earn my body confidence. Then, I scroll social media and see a girl wearing a bikini whose abs are flat as a board; the insecurity creeps up again.
We all have those attributes we nit-pick about ourselves.
As a person with a disability–particularly a progressive one–these feelings take on more facets. Maybe I have some power over how my face and stomach look, but how about when I see a girl standing in a fun, flattering pose for the camera? I cannot change my inability to stand unassisted. Fixating on this would drive me crazy, and I’ve watched as the inevitability of it all sent FA’ers into a spiral of self-loathing. Thank God, those thoughts don’t drag me down most days; I pray for inner and outer strength and simply do what I can (at the least, stay in shape). However, even that is complicated by progression. Yes, I’ve basically come to accept myself and focus on what I can control…but the “what” in that equation keeps changing. Year after year, some abilities quietly slip away (like my ability to walk without my left ankle turning) while others increase in difficulty. Working out, along with everything else (like getting out of bed and getting dressed), takes longer now because my limbs seem to be set on “slow motion.”
With all of society’s influences, typical human insecurities, and my personal struggles circling around my head, I just feel exasperated some days. Though many of you reading this hopefully don’t share my struggles, I’m sure you have also felt negatively towards your body for your own health issues, stubborn areas of fat that won’t go away, a body part that doesn’t work quite right, some perceived imperfection like a crooked nose or lazy eye, etc.
As I worked out at home the day before writing this, I felt frustrated as per usual. As I tried to move and complete the exercises, I felt like I was wading through molasses. I don’t know why (perhaps the result of people praying for me?), but I had a surprising epiphany in the midst of it…
What if I gave my body grace, appreciating what it can do, working patiently with it on the hard things?
I’m going to try and take a different, kinder approach to myself from now on (emphasis on “try,” as patience and gentleness are not virtues that comes easily). With abilities, appearances, and everything in between, we need to give ourselves more grace. We can spend so much time wishing our bodies were somehow better that we forget how much they do for us. To remind myself of these things, I’m writing a letter to my body. I encourage you to think of the good things your body does for you!
Thanks for waking up and keeping me alive every day. I know combating this progressive disease is hard on you, so let’s make a pact: I’ll be good to you if you’ll work as hard as you can for me. I understand that dynamic will change with time, and you won’t always be able to do what you can now. I’ll be forgiving; just don’t give up fighting.
To my eyes, thank you for allowing me to read books, appreciate the beauty of creation, and see the faces of my loved ones. To my ears, thank you for enabling me to hear music, chirping birds, and the sound of ocean tides rolling into shore. To my nose, thank you for enabling me to smell pizza, pie, and that “just rained outside” aroma. To my tongue, thank you for enabling me to teach classes, preach sermons, and lick ice cream cones. To my brain, thank you for enabling me to appreciate the intellectual and the spiritual. Shout-out to my other inner organs for doing your thing–you’re the unsung heroes. Lastly, to my hands, arms, feet, and legs–well, you tend not to do what I tell you, but thank you for all the little things from typing this letter to stepping in the shower.
Thanks for reading! Are you critical of yourself and your body? What are you thankful to your body for? Let me know in the comments.
Throughout this experience, I’ve prayed for people with mental and/or physical illnesses that are exacerbated by the current circumstances. For some, the lack of routine, of social contact, or just of busy-ness/distractions triggers depression, anxiety, etc. For others, physically staying in one place much of the time can worsen mobility issues (in other words, use it or lose it!). I will share how I’m combating the latter issue in today’s post.
Refresher on my illness and why I exercise
If you don’t know me (or if you don’t remember the in’s and out’s of my disability)–hi, I’m Lily, and I have Friedreich’s Ataxia. FA is a genetic, progressive, neuromuscular disease that worsens my balance, fine motor skills, speech, hearing, etc. and also causes fatigue and cardiomyopathy. The adjective “life-shortening” is usually included somewhere in there, but I’m trying to defy that. 😉
I regularly exercise to:
Maintain muscles and abilities
Keep my heart strong
Hypothetically, muscular atrophy can afflict anyone. Of course, it doesn’t happen to 99.8% of able-bodied people, since they tend to…ya know…walk around and what not. But if a completely healthy individual somehow wound up in a coma for six months then woke up, they’d have to learn to walk again. Point being, muscular atrophy is not technically an issue unique to the disabled. Since many FA-er’s cannot walk around, we, though conscious, face the same fate as the person lying in a coma–so we have to combat atrophy, constantly.
Cardiomyopathy means thickening and/or weakening of the heart. One to two years ago, my cardiologist informed me my heart was TWICE as thick as the average person’s. 😦 Long and complicated story short, my FA doctor thinks my heart “rebounded” after I finished a two year clinical drug trial. [The implications: the drug successfully prevented my symptoms’ progression, but when I quit taking it, my symptoms dramatically worsened as a backlash. Despite the medicine apparently helping me, the drug trial didn’t provide “statistically significant” results, so nothing came of it. *sigh*] The doctor insists that a thick heart is less concerning than a weak heart. So, another major factor in my exercise routine is challenging my heart–pushing it to beat fast and hard on a regular basis–to maintain its elasticity.
Exercising during a pandemic
I’m blessed my trainer has continued to work out with me all this time. He has dumbbells, a bench, a mat, and a pull-up bar in his apartment. Between those tools, a staircase I go up each time as a warm-up (he comes up behind me, his hands steadying my hips and stabilizing me), and just walking around (the hardest task of all), we’ve still been able to do a range of exercises. Admittedly, doing all body weight and/or free weight exercises is tougher than just using machines, so our quarantine workouts are just as hard, if not harder. However, when gyms open again, I predict it will take me (and every other gym junkie) a couple months to build back up to the weights I could handle beforehand on various machines.
I hope this isn’t the case, but it’s possible I may never re-attain those same weight limits, since my disease is progressive. That’s why physical illnesses and societal pauses don’t pair well. My FA doesn’t wait for anyone, not even ‘Rona.
I also exercise at home, where I have dumbbells, a mat, and a door frame with one step and grab bars on each side. Using these tools, I can do a few routines which primarily focus on abs and arms, though the stair step-ups and a couple mat exercises work out my legs. [If you’d like to try working out at home, check out this post I made last year: Handicap-Approved Supplies to Enhance Home Workouts (With Exercise Suggestions).]
When the stay-at-home order was first enacted in my state, I felt uncertain how situations would be handled (and what would be deemed “necessary”). I was technically breaking the rules by visiting my trainer, as we were only supposed to come in close contact with those in our household. I’m also vulnerable due to my heart issues. Given the mandatory order and my personal risk level, taking a hiatus from training would’ve been completely justified. But I knew: if anything is worth taking risk, it’s this–physically combating FA with each fiber of my being. If I quit walking around with my trainer for a few months, I might lose the ability to walk forever. If I slow down on my exercising, everything from taking a shower to driving will get harder more quickly. No matter what I do, my condition will progress…but FA’s going to have to drag me kicking and screaming.
Thanks for reading! Do you or someone you know have mental or physical illnesses which are detrimentally affected by social distancing? Let me know in the comments. Please pray to God to heal my heart muscle!
P.S. for those who remember my post on feeling discouraged during workouts as my disease progresses: I have been using a brace on my pesky left ankle, which was turning constantly, making it almost impossible to walk around with my trainer or leave the gym NOT being in pain and frustrated. The brace has worked phenomenally, thank God!
Hi, friends. Today, we’ll discuss the power of perspective, i.e. how comparison, empathy, and gratitude affect the way we see ourselves and others.
I have two diverging thoughts on this subject:
“It could always be worse; choose gratitude.”
“Your having a broken arm doesn’t mean my paper cut doesn’t hurt.”
As a wheelchair user with a host of specific and inconvenient obstacles (for instance, almost peeing myself when waking up at night to use the bathroom, or almost face-planting into my steering wheel or laptop when I sneeze), feelings of self-pity are easily justified. Most able-bodied people look at someone like me, see what I have to overcome, and feel inspired to be more joyful, ambitious, etc. since they could “have it worse,” i.e. be in my shoes. Though some disabled people don’t like serving as “inspiration porn,” which I’ve discussed on this blog before, I’m glad if the way I live and act pushes others to “do better” in some way.
In reference to the epidemics of anxiety and depression, I’ve been told that a lot of people “don’t know what real problems are,” implying that my physical disability is a “real problem”…while issues like mental illness are apparently trivial. On some level, I agree that being anxious can’t be as hard as not being able to walk around unassisted in a literal sense. But my reasoning is that my disability affects almost everything I do. I wonder if some people with anxiety would say that statement applies to them, too. Maybe it’s easy for me and many others to minimize problems we can’t see or understand. In a few brief moments throughout my life, usually during an FA-related-meltdown, an unfamiliar darkness clouded my mind; I didn’t know whether to scream and throw things at the wall, crawl in a hole and die, or what. I assume the chemicals in my brain were dipping into dangerous territory. In those instances, I wondered if that is how it feels to grapple with mental illness.
Yet, in the midst of comparing myself to people with able bodies and/or mental health issues, I am leaving out the majority of the world and infinitely worse problems…
Would I rather be able-bodied than disabled? Of course. Would I rather be mentally ill than physically ill? Maybe, maybe not. But would I rather live in a war-torn country…be homeless in the winter…have a rumbling tummy and no source of food…have to work in a sweatshop to support my family…have no intellectual freedom (North Korea)…be sitting in a prison right now for worshiping Jesus…even just have any form of cancer vs. having FA? Heck no! That list could stretch on forever.
Perspective is powerful and can lead us to do different things–count our own blessings, motivate us to “do better,” and in some cases, belittle others’ problems. I’ll phrase the conclusion of my musings as an analogy: let’s say I have a broken arm. I shouldn’t condemn people with paper cuts. Maybe their paper cut hurts as bad or worse than my broken arm, but I don’t know how their paper cut feels; either way, I should believe people who say their paper cut hurts. On the other hand, if I remember how many people have more and/or worse injuries than me, I can acknowledge that I’m blessed in spite of my broken arm.
Thanks for reading! Do you choose gratitude despite whatever your “broken arm” is? What do you think about the power of perspective? Let me know in the comments.
[Interesting SN: The paper-cut-vs-broken-arm analogy is flawed because almost all of us know how a paper cut feels, and those who have also broken their arm could pretty much objectively say the broken arm hurts more. In actuality, most of us have no idea how the suffering of others feels.]
Hi, friends. Today’s disability chat discusses how my relationship with exercise has changed as my disability, Friedreich’s Ataxia, has progressed.
A nagging sense of disappointment
In the past, I’ve written about the importance of exercise for people with limited mobility, shared exercise routines, etc. (All available under the category “Exercise“). I still workout devoutly, but my dynamic with exercise is transforming because the symptoms of my disability worsen with time; limitations such as fatigue, poor fine motor skills, etc. have become more debilitating.
I’ve explained in the past how exercise provokes the body to release an array of feel-good hormones, making a workout beneficial to one’s body AND one’s mental state. But this year, the feeling of “badassery” I’ve always gotten from exercise is often plagued by a nagging sense of disappointment. I feel frustrated because I’ve had to cut down the amount of reps I do in a certain exercise or because things are getting harder than they used to be. For instance, my left ankle has inexplicably gotten very weak very rapidly, so when I walk around the gym with my trainer, it “gives out” repeatedly; about half the time, my ankle rolls so badly that I’m on the floor, grasping it and whimpering in pain, unable to put my weight on it for a few minutes.
Two tips: eliminate guilt & adjust/adapt
A blogging buddy who primarily writes about invisible illnesses, Invisibly Me, has written about things we need to stop feeling guilty for–being less productive when we are sick or tired, etc. I need to apply her advice to myself with exercise. I need to stop feeling guilty that my progressive condition is *gasp* progressing and just appreciate my body for all it can still do. I need to stop feeling guilty for trimming down rep counts and cutting out things I can’t do anymore; instead, I should be proud of myself for working out at all (since plenty of people without my obstacles don’t!).
Aside from eliminating guilt, I need to adjust/adapt. There is a fine line between what I need to just accept and what I can actually change, and I have to quit feeling sorry for myself to find that line. [How many life situations does that statement apply to?!] Given that I can walk (with strong assistance) if not for the ankle issue, I need to find a way to prevent it from rolling–something to stabilize it. Update: I’ve just ordered an ankle-brace-esque contraption, so pray this helps!
My relationship with exercise is changing because my body is changing. But if I want to ditch these feelings of disappointment, I need to:
Accept what can’t be changed and relinquish feelings of guilt for the inevitable.
Discern how I can adjust/adapt to the inevitable and enact changes that will make life easier.
Thanks for reading! How is your relationship with exercise? Let me know in the comments.