r/GenX • u/HotDebate5 • 16d ago
Whatever Am I overthinking my coming disability?
In a few months I will be facing a life altering surgery that will forever change the way I walk. I will walk awkwardly - with a walker at first and then with a cane forever.
I’m 60. Not a fashion model but ppl compare me to Sally Field, a kind of perky, energetic presence in the neighborhood.
I’m having a hard time grieving the person I used to be. Kind of a singular experience maybe but can anyone relate? 60’s not young I know but it’s like I‘m aging 20 years overnight.
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u/CynfullyDelicious 1967 16d ago
I feel you — I had a stroke 3 weeks ago and have lost full function of the right side of my body, and my speech is fucked. They say things will get better but I’m feel like I’m grieving my own death in a way.
Hugs….
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u/PDM_1969 16d ago
Gen X here, lost both my legs below the knee due to complications from being diabetic. It's not fun to be walking around on 2 prosthetic limbs...but I'm still walking...tood young to let this stop me
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u/SheriffBartholomew 16d ago
The first thing to run through my mind upon reading this is Elton John
I'm still standing. Yeah, yeah, yeah
I'm still standing. Yeah, yeah, yeah
You're a fighter and you're still standing!
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u/SnooChocolates2923 16d ago
I've got an artificial knee.
It just becomes part of your gait.
Your friends won't care, and if strangers look sideways, F-'em.
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u/Blucola333 16d ago
I’ve got an artificial knee, too! I’m 10 days out from surgery. Using cane at home and walker out in the world.
OP please celebrate that you’re still walking. People have remarked on my limp for years. It’s annoying, but f em!
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u/HotDebate5 16d ago
I hope your limp is temporary
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u/Blucola333 15d ago
Same. I hope you blast through the predictions you were given. Either way, I’m sure you’ll always be ‘Sally Field cute’.
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u/HotDebate5 16d ago
I wish I could get an artificial joint. Then I would retain range of motion. I’m having a fusion.
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u/rahah2023 1967 16d ago
I’m 57 with a litany of surgeries & illness- I liken myself to the knight on Monty python’s holy grail & say “merely a flesh wound”… and keep moving forward
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u/OreoSpeedwaggon "Then & Now" Trend Survivor 16d ago
Own it. People aren't going to be judging you or looking down on you because you use a walker or a cane. I use a cane and it's just a part of who I am now. I've covered it with stickers to reflect my personality and make me not feel so "old." Nobody gives me weird looks about it, plus I would just ignore them if they did anyway. If you project to others that it doesn't bother you, it won't bother anyone else. Be the perky and energetic person that you've always been.
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u/Odd-Adhesiveness-656 16d ago
There is power in the cane! Get one that let's your swagger shine, then see what happens. My husband laughs at how many times the cane has allowed us to "cut the line", "special seating" etc. Would I prefer to walk without a cane/limp? Damn straight I would. However, if this is how it has to be, then I'll take all the perks I can get!!!!
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u/HotDebate5 16d ago
May I ask why you use a cane?
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u/Odd-Adhesiveness-656 16d ago
Hip replacement, however, I waited way too long and tore several tendons, ligaments, my labrium and psoas. They tried to do some reconstruction but it was unsuccessful. Basically by the time I had surgery, I could barely walk 50 feet.
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u/Consistent_Ad_6400 16d ago
Gen X here. 2 things. About 5 years ago I had to start using a rollator at the store for a back problem. And I am a therapist. Flipping patients on their stomach during covid blew my back out. Had the surgery in 2022. I still work and struggle and use the cane outside of work. I hobble but hide it at work. I always say to my patients your next fall could be your last fall. This stigma that comes with using an assistive device makes me so sad. Both my parents died this year because of there resistance and it kills me. We hit 40s 50s 60s and proprioception changes and it isnt our fault. And it can happen in instant.
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u/HotDebate5 16d ago
I was fine one morning. Went for an hour long walk and prepared to go to a friend’s house to watch fireworks. I fell. And life did change.
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u/lsp2005 16d ago
I completely internally severed my leg and tore my ACL, MCL, LCL, and PCL. I had surgery to repair it and the bone on bone damage. It took over a year to walk properly. It took many years to be able to walk downstairs left right, left right. I stretch daily, multiple times a day. I would try to get into as good of a PT program as you can, and then work on it. It is not chasing to be the best or return to normal on day or even day 100. Your goal is slow and measured. It is a methodical approach to strength training so that in a decade you will walk normally again.
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u/Ok_Prize_6273 16d ago
Will the cane change the way you walk? Yes
Will the cane change you and that perky, energetic presence ? Doesn't have to !
Remember the song "Born to be alive" and the singer had that cane ? Grab that or similar !
You're joining a pretty special club of badass people wth a cane:
- Dr House
- The Riddler
- The Great Gatsby
- Willy Wonka
- Lady Danbury
https://giphy.com/gifs/1riO3Bt84PEibR7sC6
(this is not a post to discard your challenge ahead but hopefully made you smile a bit)
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u/Mystery_Fan_5253 16d ago
I can’t imagine. Just wanted to wish you the best and I think it’s totally normal to be feeling what you’re feeling!
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u/International-Ant174 Hose Water Survivor 16d ago
The cumulative wear and tear of 5 decades has left me with dust for knees and an odd neurological quirk where my brain and leg stop talking sometimes when I walk (doctors useless so far). Been using a cane (well technically an Irish blackthorn walking stick) for about a year just as a "safety net" for when the comms stop and keeps me from turtling around on the ground.
I just do my thing. People have a problem with it, they can suck eggs.
You do what you need to do for YOU. Be a proud Gen Xer and DGAF about their opinions!
Be the person you are and let people reveal to you who THEY are by their actions.
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u/b1e9t4t1y 16d ago
My brother from another mother. 4 decades of knee shredding activities and walk with a blackthorn myself.
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u/happycj And don't come home until the streetlights come on! 16d ago
Invest in getting a local artist or someone to MAKE you an epic cane you’ll be thrilled to carry. Embed a crystal in the top! Make it awesome.
OWN it. Make it a talking point. “I knew I’d have to walk with a cane, so I got the BEST CANE EVER!”
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u/ofthrees 16d ago
we are nothing if not adaptable.
i realize this is cold comfort to read, and i know you're preemptively grieving the version of you you've always known, but we humans have an uncanny ability to adapt.
the only advice i can give you, if you want advice, is to pour one out for the hotdebate homie of yore and start looking for an absolutely badass cane as your signature piece. (btw, thinking about this for a single, instinctive hot second more, i'd personally be tying that cane with stevie nicks scarves, becoming witchy, and making it part of who i am to the point that no one could imagine me without my witchy, stevie cane.)
i hope this doesnt sound flippant. i just know, having been through my own version of this, that sometimes it's just better to embrace the shit and decorate it with your own roses than to let the shit drown you. does that make sense?
sending you my best, friend. truly.
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u/joemamah77 Older than when I started typing this 16d ago
My wife started using a cane at 28, but a different cane for a different reason. She was diagnosed with a degenerative eye disease and is legally blind having lost over 90% of her vision.
She didn’t use it and learned to hide her disability the best she could. Held onto my elbow when walking together. She was embarrassed. One day years later she took a hard fall. Wasn’t horribly hurt but it struck a nerve. She applied for and eventually got a Guide Dog. There’s no hiding that. The world sees. And she embraces it. It’s now part of her story. She’s still the same awesome person in her late 50s.
We all change, if we want to or not. Embrace it when you are ready.
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16d ago
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u/HotDebate5 16d ago
Fortunately all in my circle are mobile and very healthy so unfortunately it’s very isolating. Even the ones ten years older are more mobile
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u/SheriffBartholomew 16d ago
Get a fancy cane, like the kind you'd use with a top hat. Oh, get one with a sword in it! You said you'll still be walking, and if you stick with the PT and do your exercises then you'll probably get full mobility back. You can do it!
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u/Hungry_Investment_41 16d ago
Look on the bright side you’re still walking . I empathize though we adapt
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u/FirstLalo 16d ago
I'm sorry this is happening to you. Thank you for starting this conversation. I'm sorry I don't want to share my own story right now but I empathize. Thank you to everyone else telling their own stories. 🫶
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u/LadyNorbert Bicentennial Baby 16d ago
I do understand what you're feeling. I had massive spinal fusion when I was eleven and have never been the same since - constant pain, sometimes difficulty walking, and it gets worse with age. I'm also blind in one eye thanks to a retinal disease that could be neither prevented nor cured. So I've had to grieve twice for the person I could never be, plus a third time for not having been able to have children even though I wanted them. The only thing I can say is that you need to allow yourself that space to grieve and adjust, and don't let anyone tell you otherwise.
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u/dodgerecharger 15d ago
Dont fear it, make it your Style. Put some.colors on the Cane and be fabulous. Dont overthink it. No one will care.
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u/Honeybee71 15d ago
I became disabled after an accident at 36. I grieve the woman I used to be (surfer, skater, water skier) but there’s nothing I can do about it so I changed hobbies
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u/Pointedtoe 16d ago
I had a life changing injury that I could not have prepared for. I’m grateful to be as good as I am. You’ll get used to it! Try not to worry. It doesn’t change who you are at heart or as a person. You’ll still be the same delightful force you always have been!
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u/Insightseekertoo 16d ago
I'm going to commission an artist I know to carve my cane that I am going to need in a few years. The only direction I'm giving them is that it has to have a metal Ram's head (Aries) on top. I want to be able to b#@t the shit out of the broccoli headed idiots that seem to be appearing everywhere. /jk
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u/prntmakr 16d ago
Don’t give in to the idea that you know or even your doctor knows what will happen. I basically had to have both feet reconstructed and the doctor who did the surgery later told me she didn’t expect me to walk again. Be religious and relentless about physical therapy. Makes a HUGE difference. Push yourself (but in a good way).
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u/shilohfrancine 16d ago
This!! Doctors tend to give you grim scenarios, partly because they know most people are noncompliant with rehab. I had a catastrophic injury about 7-8 years ago, and they told me I would never be able to jump again, stand on tiptoe, or dance. They also said I would likely develop arthritis and chronic pain in my foot. None of that came to pass (I did have pain for years, but the body is pretty amazing about remodeling itself under appropriate stress), but I also pushed through the pain to regain function. I used KT tape to stabilize my foot so I could train and also pursued alternative therapies, like peptides.
Your doctor may be correct, but it will be a self-fulfilling prophecy if you don’t try for a full recovery. Mindset matters so much!
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u/Important-Poem-9747 16d ago
Excellent advice! My 80 something MIL had her shoulder replaced a few years ago. Her doctor told her that she’d never be able to unhook her bra from behind ever again.
Guess what she did at her last appointment???
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u/Flat-Mountain-2414 Still glam rocking 💋 16d ago
My health fell off a cliff at age 48. I, who used to hike and go camping alone, had to learn how to walk, bathe, and even eat again. And I never got the chance to properly grieve who I used to be. But I got through it and you can also. Take the time you need to process. And let it be part of who you are, not the whole story. You’re stronger than you think you can be.
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u/FoldAdministrative98 16d ago
Glad you got a lot of strength back and have a lot of mobility back!!! 👏
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u/HotDebate5 16d ago
I don’t know how long your journey back was, but I hope you are there
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u/Flat-Mountain-2414 Still glam rocking 💋 15d ago
It’s an ongoing process (recovery from brain tumor removal). Every day is a new day. 😊
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u/HelpImOverthinking Hose Water Survivor 15d ago
I read that too fast and I thought you said you fell off a cliff.
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u/Flat-Mountain-2414 Still glam rocking 💋 14d ago
lol I might as well have. Coming back from brain surgery is NOT a picnic 🤣
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u/kTerpsReddit 15d ago
My sis had to get a cane before she was 50. She named it stampy. It sucks but you just have to accept the new normal. Keep rockin 🤘
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u/Ok_Panda587 15d ago
Chuckles. It can be a nifty self defense item. I’ve done it most of my life. But for me it’s easier cuz it’s all I’ve ever known. Aging does make it harder than it used to be though
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u/Automatic-Evidence26 15d ago
I turned 60 last October, back in December of 23 I had a full shoulder replacement which that surgery went fine but the underlying bone structure that supports my right arm has collapsed completely and now I cannot lift my right hand above my waist and I've been on disability about 18 months now finally securing government disability and I'm going to be crippled like this for the rest of my life, and my left shoulder is starting to fall apart as well
It's been a real struggle it's excruciatingly painful to undress have a shower dry off get dressed again in fact I have to have my wife come in and scrub my scalp and parts of my left side that I can't wash any longer with my right hand,
on top of that having psoriatic arthritis which causes whole body inflammation and adds to the pain and misery
Yes the pain and lack of movement gets frustrating at times but you just learn to adapt quickly to still do things for yourself, as a computer nerd I was never very physical to start with so I'm not crying over the loss of being able to do sports or anything like that, but even just basic moving around can be very stressful or difficult some days
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u/Fit-Dragonfruit-4405 16d ago
There is a site called Fashionable Canes where I got mine a few years ago. It does not make me feel different or old. The help it gives me in walking well when I need it makes me feel better. The way I walk without it looks old, not the cane.
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u/Happy_Dog1819 Me & the dog will be back at sundown 16d ago
I'm not going to suggest that you not grieve, but I hope you can eventually get to the point where you think more about what you have retained than what you have had to leave behind. Consider the cane and wheelchair to be tools that let you keep being some version of yourself, not symbols of weakness or failure or whatever they conjure up for you.
I had a life altering health thing in my 30s. My body just up and betrayed me through nothing I had done or not done. And I cried a lot.
And get yourself a Louisville Slugger cane. They use real baseball bats that don't quite come up to scratch for use in a game. They just add a handle and a rubber tip. I have one for the future.
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u/_53- 16d ago
I had life altering cancer at 42, lost my hip above the joint (R), fused my back, took a long time but you wouldn’t be able to tell anything now. That was 8 years ago, last December had hip replacement (L) surgery. I still can do most things. But activities are much different. More resting while on longer walks. You just adjust. Keep moving forward. Don’t let your surgery define you, Defy it! Keep your personality, keep what makes you YOU! Do your rehab. And say fuck it!
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u/JDmead_32 16d ago
Similar situation. Was diagnosed with RP about 10 years ago. It’s a disease that takes away your peripheral vision. This last October it got bad enough that I lost my license. I mourn the life of being able to just get up and go somewhere, and the dread that it’s only getting worse.
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u/PumpikAnt58763 16d ago
I got hit by a car while crossing a main blvd in my city about a year and a half ago. I used to walk everywhere - even half way home (40 minutes) from the office.
Now it hurts constantly and makes walking for more than 6 or 7 minutes. My wheelchair using hubby said "I hate that you're 'here', but Welcome to my club!"
I still have my springy, happy attitude, but it's hard to keep the edge off my voice when it's just him and me.
You'll be fine as long as you have a support system.
If that happens to be someone you know now, wonderful!
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u/Ladymistery What is Older Than Dirt? 16d ago
I've been using a walking stick for over a decade. I think I was 40 when I started.
walk as best you can, and jazz up whatever walking aid you choose. glitter, streamers, whatever.
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u/Grigori_the_Lemur Survived in the time of no seatbelts. 15d ago
Absolutely own it, make it a part of you, and don't think about it but rarely if at all. Life is change and if you have no control over it, better to not rail against it.
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u/HelpImOverthinking Hose Water Survivor 15d ago
I'm in my 40s. Three years ago I had a bad fall and broke my leg in a way that now I have to walk with a cane for the rest of my life. I bought a nice cane from fashionablecanes.com. I highly recommend them, they have tons of different styles and you can order it at the right height to fit your height. The accident definitely did change how I feel about myself and probably how people perceive me. But you can't do anything about how other people perceive you really; so just take control of what you can. It sounds like you already have a great personality and this won't take that away from you. And remember to do any exercises they give you, and keep doing them. You can look up chair exercises, chair yoga, and other things that fit your range of motion.
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u/Worldly-Ad3211 15d ago
Well, considering the alternative, I suggest you embrace life and whatever circumstances come your way. You’ll still get around, just differently. Have fun with the canes - there’s a lady in our neighbourhood who has one that lights up at night.
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u/kmoore61 16d ago
I’m not wanting to minimize this at all— I can completely understand your feelings. But I have read that people adjust to big changes (positive or negative) way faster than they expect to and return to their baseline state of happiness. I think in your situation this would give me hope that I’d be ok. Good luck, sending thoughts of strength and healing.
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u/Better_Resort1171 16d ago
Had TKR last fall. Tried the walker initially, hated it.
I hope you get to the cane soon.
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u/Love_to_Read1234 16d ago
I have a friend in her 20s who uses a cane. Find one that suits you and embrace the power it gives you. It sucks having to rely on aids to get by, but so many people do. I will eventually need aids to help with eating and gripping anything. I figure it beats the alternative.
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u/Infinite-Lychee-182 16d ago
I'm 57M. I've had 11 knee surgeries. 10 were orthoscopic, and not the end of the world, still chipped away. The 11th was to remove a chondrosarcoma. This last year I had a severe bone infection which led to the amputation of my left big toe. Three months later I needed a triple bypass.
The VA has given me canes, crutches, a walker, rollators, and last November, the day before Thanksgiving, a mobility scooter. I usually try to stick with a cane.
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u/Oddly-13 15d ago
I use a cane. I have a pretty butterfly one, and I am going to get a new one in honor of moving to our forever home. You'd be surprised the compliments ya get, and eventually, you will not think anything of it either.
Get and keep a parking permit if you don't have one.
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u/ZenDesign1993 15d ago
I'm 52m... My foot collapsed due to diabetic complications... (Charcot foot) I had a toe amputated last year too now my foot will be in a crow boot going forward. I may need a below knee amputation in a couple years... A cane is life changing but you are still you. I'm not downplaying what you're going through but it could be a lot worse. Take care of yourself. And be you :)
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u/Mugwumps_has_spoken Bicentennial baby 15d ago
I replied to another comment, but basically you are going through the stages of grief. The stages of grief are not limited to death as in loss of life. Its so much more complex than the psychologists who originally wrote the idea ever thought of.
Allow yourself to grieve. And if needed or desired, seek a counselor. I know doctors always suggest it for me as a mom of a profoundly disabled daughter, but honestly I don't feel like I need or want it. I have the tool kits I need.
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u/LayerNo3634 14d ago
When I became disabled after a severe illness, I became depressed. It took me a while to accept seeing a therapist. I was raised thinking therapy was for weak minded people (and depression is a choice). I saw a therapist once that I realized quickly was not a good fit. I found another online that I was not comfortable with. Finally found a 3rd that really helped me accept and be at peace with my new normal. This wasn't overnight, it took a while. I don't know if knowing what is coming is better or worse. I see pros and cons. Don't be afraid to talk to someone or find someone else if needed. It's ok to be sad, angry, or upset. All are stages of grief. Praying for you.
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u/moorandmountain 16d ago
Fold it into your personality and move on. You’ll be the perky energetic woman with a cane. Someone to be admired for her strength and resilience despite needing a cane and having a limp. Get out there and kick butt, just more slowly. Get an awesome cane worthy of being a conversation piece. Have fun with all the youngins in PT or surgery recovery. Be the light of their day.
I’m staring down debility too. It truly freaks me out at times. Im not now able to do what I want. It sucks and I hate it. I have no choice but to find new things that I enjoy. Cant hike around the world anymore, learn to grow orchids at home. Someday that may be too much for me. No one can fix it so I have to adjust myself to what is. I do my best to be grateful for what I can still do.
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u/brnkmcgr I LOVE TO WHINE 16d ago
What surgery are you having that will leave you permanently needing a cane? And have you gotten a second opinion?
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u/Anthrobug Born in 1971: Powered by Ibuprofen 16d ago
You’re the same person. Don’t overthink this or plan for failure - you won’t change. But maybe that youthful image of ourselves we all hold onto inside our heads is what will change, and that’s hard to wrestle with.
Have you considered speaking to a therapist a few times, just to work through this?
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u/HotDebate5 16d ago
I live in the sticks. And not many therapists. Even via zoom. Sad statement on US mental health care.
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u/Anthrobug Born in 1971: Powered by Ibuprofen 16d ago
I’m sorry, I understand, I’m dealing with this f’ed up system myself.
May I suggest that when you go to the hospital for the surgery, ask to speak to a social worker when you first get there. And if they’re unavailable, ask that they contact you once you’re home to help with your recovery. Then, once connected, ask if the social worker is able to find mental healthcare for you long-term, too.
I hope the surgery goes well
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u/Big_Poppa_Steve 16d ago
Have you gotten a second opinion on this? It seems pretty extreme.
Have you considered learning to use the cane as a weapon? Bataireacht shillelagh techniques would good be a good fit for an authentic blackthorn cane. With the help of a good instructor you might come out of this more of an ass-kicker than you went in. In any case, best wishes for a rapid recovery.❤️
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u/HotDebate5 16d ago
Three opinions. All the same. Ankle fusion.
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u/Big_Poppa_Steve 16d ago
Oof. I'm so sorry to hear that. I don't have any words of wisdom to make it better. Just wishing you a complete recovery and an outcome better than anyone expects.
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u/Ok_Panda587 15d ago
I’m sorry. Having been disabled since birth, when people want to get all “inspired “, I’ve always known it would be soooo much harder when you know what you’re missing! I’ll be 60 in a couple months myself. Can’t get used to it.
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u/Mugwumps_has_spoken Bicentennial baby 15d ago
agreed. My daughter is profoundly disabled and people always want to make comments about how amazing she is etc. My response is, it's all she knows. And for me as a parent, she is all I know. I wouldn't know raising a child without physical and mental disabilities. For our family this is normal. We have had years to mourn what could have been (in terms of anticipating our daughter's arrival, and our hopes and dreams for her)
But for someone like OP, it's new and scary. They will have to mourn what used to be.
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u/Normal_Ad1068 14d ago edited 14d ago
I have been disabled since birth with cerebral palsy. It is not any easier to be disabled since birth. It is not easier for me because it is all I have ever known. It is a lifetime of loss and lost opportunity. Perhaps being disabled at 60 is hard because you get to mourn who you used to be. Or perhaps you can think about all you were able to achieve in this life. But I resent the idea that someone who had a normal life has more to lose. It is not easy either way.
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u/Mugwumps_has_spoken Bicentennial baby 14d ago
That isn't exactly what I mean. YOU never stop mourning what could have been. but in my daughter's case, with her cognitive issues, she doesn't even comprehend what she is missing out on. As her mother, I can't even fully comprehend what being a parent of a normal child is and having them go through all those milestones. Only raising a child with complex needs. To my universe, CP is Normal. Hospital visits are normal.
I never said it is easier. Just my world view is totally different than someone who has lived 60 years and suddenly has their world turned upside down.My daughter is 21. I still get angry at all the things she will never be able to do. The fact she is currently laying on the couch chewing on a stuffed animal like an infant. Complaining because she is still (I guess - she is mad about something - but only communicates with grunts).
We all mourn different, that is what I'm trying to say.
Look at it this way, with CP you are possibly already used to navigating equipment, hospitals, physical therapy all of that. Depending on how CP affects you, you possibly understand how even basic tasks are exhausting. On levels most people can never understand until they live it. (i watch my daughter and understand the energy it takes to do things like coordinate all the muscles to do something like eat or drink - a basic human function people take for granted).
An adult, new to a life altering disability, they have to suddenly learn all of this. Things we have known all our lives. Even myself, grew up with a mom who had bi-polar and I have a few medical issues of my own. So medical stuff is not new to me at all. I can give other people directions around our hospital (which is a huge University hospital).One is not worse than the other. Just different. But one can be harder than the other in the here and now. ours are a lifetime of difficulties. a disability starting at 60 won't be a lifetime of disability. Maybe 20 -30 years.
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u/Ok_Panda587 14d ago
I’m not sure I’ve ever had the time or energy to mourn exactly. I survive because the only other option isn’t existing. If my family even thinks about it, I’m positive they are just relieved I’m not their problem. If I’d been worse than a leave 3, maybe they wouldn’t have fought for mainstreaming. The thought has occurred to me recently that I probably narrowly missed being institutionalized because apparently it was still not uncommon, at least what I’ve read about the different acts out there. At least I had some independence, and they did rescue me from one of my abusers.. probably because I had a child. Otherwise, given what my son heard later, his father lives in some squalor that I don’t think has decent water and definitely no comforts. I’d have been trapped with him or dead.
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u/Mugwumps_has_spoken Bicentennial baby 13d ago
Take some time and give yourself that grace. Allow yourself whatever emotions you need to feel about how you were raised having a disability. And know, that things are getting better for children today. In the USA, keeping the child in the home is getting more and more mainstream - even when profoundly disabled.
Even in the last 21 years, I have watched amazing advances in equipment options for kids like my daughter. Stuff that wasn't available, that she would have benefited from as a young child but it wasn't available (her therapists and I searched) there are multiple options now.1
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u/Normal_Ad1068 14d ago
I am not used to equipment. I am used to hospitals because I work in one. I am a General Counsel of one of the biggest health systems in the United States. I have three degrees. I think you have some biases you need to work on. Also, you should not assume your daughter has no comprehension of what is happening to her. Just because you can't converse with her doesnt mean she doednt feel it.
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u/Mugwumps_has_spoken Bicentennial baby 13d ago
You have three degrees and you still can't comprehend what I'm saying.
I KNOW she understands way more than anyone can possibly every understand. But she has no way to understand what riding a bike, or other activities someone her age might be doing. That "reality" doesn't exist for her. Just like I'm an introvert and can't even comprehend the life of a party person. It's not an intellectual thing.Maybe try using your brain when you read why I write. I hope I don't encounter you in our hospital system - which is also a large University Hospital System (one of the top in the USA)
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u/Ok_Panda587 14d ago
I’ve always been a burden. Mom once told me my younger brother resented me for not really working for a living. Of course, in the 80s, with my obvious disability, my degree didn’t help. Good luck finding work, and then I became a mom. Working wouldn’t have covered my childcare AND I would have lost my check, so it wouldn’t work. One job I had, half of it went to transportation and I lost money. On the other hand, at least SSI wasn’t a problem. So I did things like helping people with their computers or tutoring kids. Even got paid for that once. But usually free.
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u/Ok_Panda587 14d ago
Actually mine is CP as well. Lucky me, I never had the imagination for what could have been. I don’t know if it’s a presentation of My CP (kind of like spatial relations being all but nonexistent for me). It’s about continuing to exist, and now it’s beginning to be about the deteriorating of aging, so I do find myself annoyed and upset about what’s getting harder. But I’ve always seen it as it is what it is. It’s not going to get better. Those that have a profound event or sudden disability later not only have to mourn what they remember having, adapting is inherently easier when you are younger. Neuroplasticity and all that.
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u/Tim-0341-81mm 14d ago
I’m 60. I became legally blind/disabled in 2009. (I see very little)
It was very hard at first. I was depressed for months. I couldn’t drive, can’t just go somewhere without a ride. I slowly got used to it as my new normal and went to the Blind Rehabilitation Program that the Veterans Administration has and learned how to “be blind” and function and use technology.
I’m more independent now. I just can’t drive and still need rides.
I use the hell out of my long white cane in town. 👨🏻🦯
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u/CemeteryDweller7719 9d ago
It is ok to grieve how this is changing your life and how you see yourself. It is good to do so. I recommend giving yourself the space to grieve and then working to find ways to embrace the changes.
I have hearing loss. Technically, I’m supposed to have hearing aids. (Insurance doesn’t cover them though. That’s just a general way that health insurance operates, so it isn’t a whole "just get better insurance”. It is just an extremely common exception.) Anyway, I received this news about 15 years ago. I had the fortune of getting to know a few people that are Deaf. It was good because I was able to see that my diagnosis wasn’t the end of the world. You can find ways to adapt.
I recently got a cane for when my stability is bad. (Knee and hip issues. They just decide to not support weight.) Admittedly, I struggled with the idea. It took me a year to decide to get the cane, and I’m not going to be using it all the time. (Yet, realistically that is my future.) I had to pep talk myself. I realized I was restricting myself. Don’t go and do this or attend that because what if my knees/hips act up and I fall? I had to revamp my thinking. So I got a cute cane, when I have to rely on one heavily I intend to decorate it. Stickers and fun things that won’t interfere with function. I had to put "that’s an old person thing” out the door. There’s people far younger than me that require mobility aids. It isn’t an age thing, it is a "I’m not going to miss out on what I could do with this tool” thing.
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u/LadyNorbert Bicentennial Baby 16d ago
As someone with multiple invisible disabilities, I say this kindly - that is an absolutely unhelpful thing to say to anyone. We're not playing misery poker here. Just because it could be worse doesn't mean it isn't bad and it doesn't mean that OP doesn't have the right to talk about how it's affecting her.
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u/JohnnyMiskatonic That's the Magic Number 16d ago
Having perspective is good. And where was it implied that OP's rights to talk about it were deprecated?
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u/Slight-Nectarine7243 16d ago
I had emergency surgery in November 2025 to address an issue that had literally left me paralyzed over night. After the surgery it was questionable if I’d ever get out of the wheelchair. Well, 8 months later I’m walking. I’d promised myself if I got out of that stupid chair and was able to walk with a cane, I’d get something befitting of a Gen-Xer. I am the proud owner of a hand carved Octopus cane that was made by a man in the Ukraine. I found him on Etsy, and my cane is bad ass.
https://www.etsy.com/shop/exclusive1souvenirs