Thriving in an able-bodied world

Julie lived in a world that seemed to hum along at a pace she could never quite match. Her legs wobbled like a newborn foal’s, her eyes blurred the edges of everything she tried to see, and her hands trembled as if they were caught in a perpetual breeze. Her thoughts, too, sometimes slipped through her grasp, leaving her frustrated and quiet. But Julie had a spark — a stubborn, glowing ember of determination that refused to be snuffed out by the challenges she faced.

She lived in a small town where the sidewalks were uneven, the signs too small to read, and the people too busy to notice her struggle. Just getting around was a battlefield. The others around her raced ahead, their laughter echoing as Julie lagged behind, her cane tapping a slow rhythm against the concrete. Others sighed when she asked for help, and the information they gave her were a jumble of tiny, indecipherable lines. But Julie didn’t give up. She listened harder, memorizing what she couldn’t see, piecing together her day like a puzzle with missing edges.

At home, her family worried. They padded the sharp corners of their world, but they couldn’t pad the world outside. Julie saw their furrowed brows and heard their whispered fears. She hated being their burden. So, she taught herself tricks — little rebellions against her body’s betrayals. She’d count steps to navigate rooms, hum tunes to steady her shaking hands, and repeat words under her breath until they stuck in her foggy mind. It wasn’t perfect, but it was hers.

College was her dream, but the campus was a fortress of inaccessibility — lectures too fast, paths too narrow, doors too heavy. Julie didn’t flinch. She recorded classes, used a magnifying app on her phone, and leaned on a battered walker she’d nicknamed “Old Reliable.” She studied twice as long as her peers, her tremors smudging her notes, her vision blurring the screen. But she passed. Then she excelled.

She found allies in unexpected places. A friend, Mrs. Carter, noticed Julie squinting at books and quietly ordered large-print editions to give her. Another fiend, Sam, started walking with her to the store, carrying her bags without making a fuss. They didn’t pity her; they saw her. With their help, Julie clawed her way through to graduation. Her hands shook as she gripped her diploma, but her smile was steady.

Her work day was full of hurdles. The building was a maze of stairs, and the city buses didn’t wait for her halting gait. Workers stared or, worse, looked away. One day, the boss suggested she “just stay home” after she’d stumbled in the hall one too many times, spilling her paperwork. The words stung, but they also lit a fire. Julie decided she’d prove them wrong — not out of spite, but because she wanted to live as fiercely as anyone else.

The world didn’t bend for Julie, so she carved her own space in it. She started a blog — raw, funny, and unflinching — about living with disabilities in a world that wasn’t built for her. People listened. Her words spread, and soon she was speaking at events, her voice trembling but strong, her cane tapping a defiant beat. Companies called, asking her to consult on accessibility. She said yes, but only if they meant it — no half-measures, no pity projects.

Julie never stopped shaking, stumbling, or squinting. Her mind still wandered off mid-thought sometimes. But she turned every obstacle into a stepping stone. The able-bodied world didn’t make life easy for her, but Julie didn’t need it to. She made her own way — slow, messy, and magnificent. And in doing so, she didn’t just survive; she redefined what it meant to thrive.

Dealing with negative people

Everything in the world is filled with so much negativity it’s getting harder and harder to keep a positive focus. Is that even possible any more? I happen to believe it is possible and being positive is doable.

Dealing with negative people can be tricky, but I’ve got a few strategies that might help. First, I try to stay calm and not let their vibe drag me down—easier said than done, I know. Sometimes, I’ll listen to what they’re saying, not to argue, but just to get where they’re coming from. A little empathy can go a long way, even if it’s just a nod or a “yeah, that sounds rough.”

Sometimes, negativity stems from personal struggles or a deeply ingrained habit. Understanding this doesn’t excuse their behavior but can provide context. They might be going through personal issues like stress, health problems, depression, or anxiety; have a pessimistic outlook due to past experiences or upbringing; or even lack self-awareness about how their behavior affects others.

Then there’s the media and social platforms—they thrive on drama. Fear, outrage, and bad news hook us faster than feel-good stories. Algorithms know it, too, so they keep feeding us the heavy stuff. Add in the past few years of pandemics, economic wobbles, political chaos—and it’s like everyone’s got a reason to vent. People also bond over shared complaints; it’s a weird social glue.

Don’t engage in their negativity and do your best to avoid getting pulled into their negative vortex. When it’s too much, I just keep my distance where I can. If their negativity seems to stem from deeper issues like depression or anxiety, gently suggesting professional help could be beneficial. No point in soaking up someone else’s storm if it’s not my weather to handle.

Ensure you take care of your own mental health in the process. Negativity can be contagious, so counteract it with activities that boost your mood, like exercise, reading an encouraging message, singing, or engaging with positive people.

By combining understanding with strategic interaction, you can better manage your exposure to negativity while possibly helping the person see a different perspective over time. Remember, your mental health should always come first, so these strategies are also about protecting your own peace of mind.

What’s your go-to move when you’re stuck with a negativity magnet?

__________

There is a magnificent, beautiful, wonderful painting in front of you! It is intricate, detailed, a painstaking labor of devotion and love! The colors are like no other, they swim and leap, they trickle and embellish! And yet you choose to fixate your eyes on the small fly which has landed on it! Why do you do such a thing? ― C. JoyBell C.

An open letter – from someone living with MS

To whom it may concern:

There is an entire world filled with people who don’t understand multiple sclerosis. I know since you don’t live with the disease yourself it is hard to comprehend, but I hope what I have to say will help open your eyes and heart to what life is really like for me…hopefully giving you insight and understanding into the life of someone living with MS.

First off, I would like to say that multiple sclerosis is real, it hurts, it is full of challenges and struggles, and if you haven’t figured it out yet, it is invisible to a majority of the population since the destruction takes place inside the body. The effects are seen in other ways as I walk, talk and go through my day with disabling symptoms, but if you were able to see inside my body, you wouldn’t judge me so quickly. My insides are a wreck and filled with chaos.

Sure, I wear a smile much of the time, but that doesn’t mean the disease isn’t there. It just means I’m doing a pretty good job at covering it up. You see the mask I wear, but let me explain what happens day in and day out. I get angry, fearful, weepy and scared. Lingering in the back of my mind is the fact that one day my future will be drastically different than it is today. You see, MS is progressive. That means that although today I may be moving around okay, tomorrow I may not. It may take a year or 20 years, but my life is changing every day.

Please know that it hurts when you so casually decide you know what’s best for me. MS has affected every part of my life, but that doesn’t mean it’s made me incapable of making decisions. Don’t exclude me from things just because you think I wouldn’t want to be a part or because you think it would be too hard for me to do. Let me make that decision. It hurts more to be left out than to give a response of “no thank you” to an invitation. I would much rather be given the option. Please don’t stop inviting me or including me even if you get a lot of “No” replies.

Another thing that really hurts is when you tell me you know how I feel. Really? You understand the fatigue that never goes away, the numbness in my body, the pain, the bladder problems, the vision struggles? I have major damage in my brain and spine causing continued chaos throughout my body, and you want to try and compare your flu symptoms to my MS? Please don’t do that. Unless you are living with MS yourself, don’t even try and tell me you know how I feel. Support me, help me, console me if that’s needed, but don’t make the assumption that you get it.

Then there’s the problem I have of you always trying to fix me as if I’m broken. I’m not broken. I’m simply living with a chronic incurable disease. That means it’s not going away unless a cure is found…and no, there isn’t a cure yet. All those supposed cures you read about online, they aren’t cures. They are either symptom management techniques, wishful thinking, or money making schemes. Nothing has been found to completely remove MS from someone’s life. Nothing aside from a miracle! So your great Aunt Sue’s cousin’s friend who was cured using a combination of bumble bees, tin foil and baking soda…I’m not interested in the recipe. Accept me for who I am. I’m thankful you care, but your remedies cause me more weariness than help.

Something else I’d like to say…for some reason you have this need to ask me if I’m feeling better every time you see me. As I’ve said before, MS is progressive so that question truly has no answer. If I express a concern that I am having due to MS or talk about a new symptoms I am facing, responding by saying “get over it” doesn’t help in any way.

I’ve always thought that to be a strange response. Get over what? Get over the pain? Get over the fear? Get over a chronic illness? What exactly am I to be getting over? How am I to get over something that I’m living with on a daily and minute-by-minute basis. It’s easy for people to come along and say “get over it” when they aren’t experiencing my challenges, but a person doesn’t just get over multiple sclerosis…they live with it.

Instead of always asking me if I’m feeling better, treat me like everyone else. There are more things to talk about in life than my having MS. I don’t want that to be the center of conversation every time we meet. I am more than my MS. I am still me and would much rather talk about gardening, traveling, architecture or the next movie coming out. Don’t ignore my struggle, but don’t make it a continual focus either.

Please know that I have my bad days and at times terrible, horrible really awful days. Getting out doesn’t make them better either. In actuality, going out has the potential of making them worse. Me doing more will not make my MS symptoms less. Yes, exercise is important, but it has to be done carefully.

That old saying “no pain, no gain” will not work for me. If I get to the point of pain, I have pushed too far and my body is going to rebel for days, if not weeks. I have to do everything carefully and with great planning. Sometimes my bad days happen within minutes of a good moment. That’s just how rebellious my body can be. So please don’t tell me I need to get out more or I just need to lose weight to feel better. That’s not the cause of my struggle and it is not the answer to my pain.

So, the next time you decide you want to judge me for my bad days, bad moods or even my bad responses to your insensitivity, keep these things in mind…

I am the same person I was before my MS diagnosis. I am intelligent, caring, full of fun, loving, ready to laugh at any given moment, and a great friend. I also have the potential to be angry, moody, and frustrated. All still part of who I am. I would like nothing more than for MS to be cured, but as of today that reality doesn’t exist. Please don’t look at my disability as if that’s all that I am. I am still me…MS and all. The only difference is that I need a lot more love, support, care and understanding. I would much rather have someone fighting alongside me than against me.

Signed,
An MS Warrior
(Penelope Conway, Positive Living with MS)

P.S. Please share this with your friends, family, co-workers, and neighbors. Multiple sclerosis awareness is needed all around the world.

When opinions become facts

Knowledge can be powerful, but you can’t misinterpret a tiny glimpse of information about multiple sclerosis and then declare to the world that you know all about it… both the cause and a cure. Many people are even pushing their own products as support for their theories. It’s all a scam for get rich quackery. After all who else can make money today but the fakers and the takers.

Big pharma has been a great example. Push a product with no actual facts as a cure and people will buy it by the droves. No proof needed. Just spout off a few unapproved statistics and you’re gold… rolling in it that is.

To those online experts that talk about MS as if it’s cured I say…I wish you could live in my body for a day. You would quickly give up your degree in neurology. Oh, wait, you didn’t go to medical school. You got all your schooling from Uncle Fakealot and Dr Google. In that case, you need to fire Uncle Fakealot and even more importantly give up your university degree. 9 times out of 10 Dr. Google is WRONG.

But really, the internet isn’t what’s wrong. It’s people. We live in this weird period of time where people try to solve all of the world’s problems with bite-sized theories, unproven statistics and wacky medical solutions. Gone are the days of real knowledge. Opinions have become truth and everyone is an expert.

No one is wrong in how they go about living with MS. There are always things we could do better and new things to learn, but NEVER should we act as if we are the guru of all knowledge and wisdom regarding something as unknowable as MS and the human body, because we aren’t. Even doctors aren’t, they are all just practicing. That’s why their business is called a practice.

Don’t let anyone make you feel bad because they chose a different path than you. You be you and do what you know you need to do for yourself. You know your body better because you are the one actually living in it. Be unique, be crazy, make a mess, try new things, make mistakes, and even succeed…but most of all, hang onto the smiles around you and enjoy living.

There’s only one you and only one today, but there is a potential for lots of smiles to help you through this mess called life. Choose to find the smiles.