You don't ramble at all. Those are musings, thoughts and insights. You're just a bright and beautiful light. Thank you for sharing your story with us all. Love from New Zealand.
Man, you started off with my daily nightmare. I have to go to dinner with my Brothers and their wives and my Sister and her husband tonight, I have been stressing all day. It will be the first time they have had to deal with me being in a wheelchair, My stress levels are through the roof right now. The whole video Is right on point. I still have so much to learn.
Fantastic list. Really well thought out and on point. There are a couple that I am sure you have experienced but have not mentioned here. 1. The look of pity or disgust in other's eyes. 2. Asking you extremely inappropriate questions about your life. 3. People directing questions about you to the person you are with (ablebodied).
With ADHD and mental health illnesses, I have lots of struggles too. _Sometimes_ we need to talk about it. Not to play victims, but to ventilate. *Thank you for sharing* about your life!
You just amaze me with your honesty, your empathy, and your kindness to others! You shared this from your heart and it shows. This was such an encouragement to me and I think that you are a lovely person!
Number one for me by FAR is never being at eye level with anyone. Ive never interacted with anybody face to face, I was paralyzed when I was 8 years old so my eye level now as a 28 year old, is LOWER then it was when I had my accident. Sometimes it just SUCKS! Like on a trip, talking to all the people at the airport, checking into the hotel ect, your just staring straight up at people towering over you all day. trying to get though a crowd and people don’t even see you, And every other person looks down and goes “oh sorry” over and over, it’s really humiliating. some days I just REALLY want to stand up.
Your videos are my favorite. They helped me mentally adjust in the mornings when I was new in the chair and didn't know anyone else like me. It was like waking up every morning INTO a nightmare. They've helped me alotttttt over this past year. This Sunday will be my 1st year anniversary of being on wheels. Thank you!!
One year. It's such a surreal first anniversary experience. Still disbelief that it happened and yet a settling in of acceptance. This past year is proof you are stronger than you ever believed. It's downhill from here!
This is a great video, thank you for expressing how frustrating life with a SCI can be. Keep doing great things on this channel, it is so helpful. I am paralyzed completely at T4 since 2017 and don't always explain to family and friends how challenging daily life can be with SCI. I am going to share your video with them and hope it encourages more communication. Another situation that can be frustrating while being out and about in a wheelchair is when people you are trying to engage with won't look directly at you. I was at a restaurant with a friend and the server would not look at me when I ordered. I've also had servers ask my friends 'what does she want' like I also can't hear and can't express what I would like to eat.
We definitely get treated like children often, which is annoying. It's hard to express how challenging life with a SCI is to our loved ones. We don't want to make them worry or, worse, annoy them with our complaining, so we often internalize how hard things are. I still struggle with this even after 24 years. I hope my video helps open those lines of communication for you!
Dang Brit you hit this right on the head today. This is so poignant. I’ve been struggling with some of these issues you’ve talked about today. Chronic pain drags you down at times, and simply just sucks. There are bright days to, not all gloomy. Bowl bladder issues are the pits and wouldn’t wish this on anyone. But we struggle and persevere and never give up ( ok for a few minutes sometimes) then get passed the rough patch and see there’s so much to live for. They said it would be easy, we carry on. My hats off you my lovely wife of 38 years for all of her strength and commitment and loyalty. She’s my bright start, who goes through this with me day after day. Our care partners deserve so much credit. Sorry for being long winded. Hope all is well with you and your family. You do an awesome job with all you do Brit to educate. Thank you., Phil
@@EmpoweredPara Brit so very true. I can’t thank you enough for all you share here. Today’s post came at a low point, it just made me think how grateful I am to have the support system I have. Yes we do have to dig deep at times but we get through it, You’re honest approach to your videos make them so relatable, for one they’ve helped me so much. No matter how hard it might seem we have so much to give to others. Huge hug to you of thanks.
Hey, I enjoy your videos very much. I’ve been in a chair since I was 15. Anyway, the one you mentioned about wheelchair seating at concerts is one I totally agree with. It’s not that there isn’t enough seating, but here in the US a person doesn’t have to show proof of bringing in a wheelchair to buy those seats. So, what you’ll see are people people buying those seats either because it’s a sold out show and that’s all that’s left or they don’t want a nose bleed seat and will buy a wheelchair area seat to be closer.
We had a huge scare last week. My 16 yr old son had a friend pull his chair as he sat down at work, just joking. My son fell back, hit his head and neck in a horrible position hard on concrete. He had an obvious concussion, with dizziness, vomiting, etc. In the Pediatric ER, a tragic case came in with all staff busy and police all in there so we had to wait many hours. When the dr finally came in, he was furious the nurses hadn't put a collar on my son. As the dr pressed on different parts of his neck, one spot had a lot of pain. The dr looked panicked, held my son's head still, screaming "Don't move at all", calling for a collar. We were there all night into the next day with them even having specialist read his xrays and CT scan to be completely sure, but neck was ok and just a concussion. I just kept thinking of your videos that whole night, trying to remind myself no matter what happens, we'll survive and be ok.
I hate when kids do that. They have no idea how dangerous that is. I'm so glad my videos helped you stay positive in the midst of the uncertainty, but I am even more glad your son is ok and you only had to imagine what you might do instead of it being a reality. Very scary for you no doubt!
@@EmpoweredPara Thank you. I swear your videos and seeing your life experience kept me sane that whole hospital stay while we waited for answers. I'm the one who panics with anything medical with my kids, especially since my husband died, as he used to calm me. Even my son commented that he was a bit shocked I managed to stay so calm and positive that we could handle any scenario lol. He was expecting freak-out mom.
The worst is not being included...just dismissed and tossed aside. There was so many 'friends' I THOUGHT I had...but since being a quad and an amputee...one person actually said to me: 'I'd be terrified to see you drive, you only have one leg' or 'you're in a wheelchair, & I have stairs'...even my team with search and rescue doesn't include me in searches (I'm in logistics anyway)...but now they just dismiss me. That really hurts.
@@EmpoweredPara exactly...and that guy saying 'I'd be terrified to see you drive...what if you hit a deer?' Well, my reactions would be pretty much the same as his...slam on the brakes and swerve. I mean if you ask me, that was pretty insensitive of him. The thing to do is not to have anything to do with him...but I kind of depend on him to go get my mail and shopping. I will be doing things differently this month and I do plan on moving at the end of the month.
Your forthrightness makes me wish I DID know you in person and I am immediately drawn to you….in an appropriate manner!!!!!! You also have reminded me to count my blessings that I don’t need to deal with ANY of your …..challenges….. either personally or having to adjust to your ……differences …. In needs and requirements. I don’t see you (or anybody else) as being “disabled”, per se, but rather with different challenges in life. Actually, in this one short clip I find myself inspired and in awe. I haven’t viewed all that much of this clip, yet but I will recount something else that leaves me feeling awkward and inadequate around spinal injured folk….. Next message!!!
I agree 100% with the bowel and bladder routine. It is different for everybody with an SCI. I'm a C6/7 quadriplegic and my needs are different than yours in addition I am a man which makes a woman's bladder routine different than a gentleman's little bit different as well. It sucks for both of us. The constant pain as you talk about phantom or real is a big issue for me as well. Constantly concerned with your fluid intake, insuring the urinary devices are properly functioning as you state are constantly on your mind. You are more fortunate than I am. Due to my injury I get up in the chair around 6:30 AM and don't get out of it until I go to bed around 9:30 to 10:00 PM at night. Because I have gotten older it's difficult to sit someplace else also I've lost my flexibility causing more problems. The issue of accessible structures primarily should only exist for old construction. I do not know about Canada but in the US we have The ADA which went into effect in 1992. Also please keep in mind new construction to be made ADA compliant or to put in a sprinkler system is less than 2% of the entire total cost. People have a misconception that making a structure ADA compliant this costly. It is actually very inexpensive. Being able to do or not do things is the biggest hurdle. In 1977 when I was 17 and able bodied I took care of 20 lawns, had a paper route, was a janitor at a grade school, and had tons of money coming in for that era. When I broke my neck I had $9,000.00 in the bank. I learned how to do a lot of carpentry and repair work from my dad and now I must pay for all of it even though I know how to do it and that is something that is extremely frustrating. Particularly because of the lack of hand function. I agree 100% with the public accommodations issue. Six or seven of my friends wanna go to a baseball game The ADA section allows me one other person. Tip think ahead and get the row of seats in front of the ADA section so the whole gang can be together. You are spot on with lack of ADA access to houses. It will never get there. I have some friends my age [64] who just moved into an all one level home so when they get old they already have their ADA home. Big thing is my city built in hills hard to get any place. TIME TIME EXTRA TIME REAL BIG . . . The help issue is big we need exercise too when it is not super cold out. Most people are good.
Thank you for sharing your experiences with these challenging situations. It is so frustrating knowing we have to pay for things that we were capable of doing at one time.
I think that list it's bigger and harder than how initialy looks; you lift the spirit of able people and i think than people with disabilities too with your way of present the reality.
I dont have a spinal cord injury, but I used to hang out with a girl who did (from an auto accident). I learned from her a lot about what its like to be paraplegic and in a wheelchair. Back in the 1980s, a lot less places had ramps or were accessible, and that was a problem for her. She liked to go to a live music venue which unfortunately had 3 steps to the entrance, and I volunteered to go with her and get her wheelchair up and down the steps. When she needed assistance she would ask, I didnt automatically assume she needed help as she was very independent, and had no issues transferring in and out of her wheelchair. .At first I didnt know that having a spinal cord injury meant anything other than she couldnt move her legs, and had to use a wheelchair but I learned there was so much more to it as time went on, especially issues with bowels and bladder. She wore a catheter full time with a legbag and wasnt embarrassed about explaining it although it did make me a little uncomfortable when she talked about it. She told me to ask her about anything I wanted to know which I thought was cool. This was long before the Internet, so it wasnt easy to learn things like what she told me and whats in this video.
Although I am not paralyzed, I have been a full-time wheelchair user for 15 years due to an incomplete spinal cord injury that happened during neck surgery. One thing I would add to your list that sucks is air travel - it’s a combination of multiple other points you mentioned all rolled into one: strategizing about bathroom use, waiting on help, and general lack of accessibility.
Hey Brittney, that was one of the best informative videos I've seen, I agree with all your points, especially 5/6/7, I think that not being able to be part of things with friends and family can lead to an inner loneliness too, even though you're with others you feel like an outsider looking in. Another thing that drives me crazy are spasms, I have them off and on all day 24/7. But thanks, so helpful to read that others are going through the same thing. Definitely not a ramble, who said you talk a lot 🤔😂 Brilliant
Thank you Bob! Spasms are definitely brutal for some people! Mine are pretty mild, so they didn't make my list, but I know so many people for whom spasm would be in the top 5.
Those comments about communication ring true in our family. My wife internalizes them. Just tonight, I looked over and she was grimacing in pain. (She has CP, not SCI, but there are similarities) I had to ask her what the problem was - her leg was in pain at a recent common spot. She reluctantly told me. She really needs to watch this video. The issue is a combination of “not wanting to worry me” and the fact that she has told me that she hates having to ask me to take her to repeated visits to her Orthotist. I try to assure her that taking her is never a problem - obviously I knew when we got married that she was disabled and things like this are expected and that is fine. (I LOVE my wife!) Sometimes I think she needs someone like you to explain this to her. My mind goes to your long-ago video you and your husband did on “Interabled Couple” and his 6-month contemplation, and that helps me. Now I need something to convince her that this is all normal.
Yes to all of these. A couple more I thought of: Places that claim to be accessible but aren’t (~30% of ‘handicap’ stalls, ‘accessible’ trails with gravel and a significant slope); place that are CLOSE to accessible but aren’t - I’ve only been a wheelchair user for a year and a half and there’s so many shops and cafes and restaurants in my area where the place would be accessible except for one little step, or the product displays are in the way, or they have a ramp but it’s covered with snow or the door is too heavy etc. I also find rolling through parking lots and crossing streets absolutely terrifying. I’m very tall and went through most of my life being very visible to cars when moving through traffic, now I’m like four feet tall and afraid someone will back up into me or not see me crossing so I often will just avoid places where I have to cross a busy street or if it’s after dark. I never had to think about that when I was able bodied. And yeah, getting my chair in and out of the car by myself requires so much effort that I try to only do one task out of the house each day if possible. We really need better transportation options and/or motorized lifts etc to be covered by insurance just like our chairs are, so we can actually leave the house on our own. Love the honesty and openness Britney! Your videos have been a godsend for me over this past year and a half.
Yes to all of those! It definitely takes getting used to when going from an adult height to a small child's height. I always watch for the white back up lights when wheeling in a parking lot but it's still scary!
Ambulatory wheelchair user here currently going through life without a wheelchair. I hear you about inaccessibility of places. Here in Toronto, the elevators at the subway stations frequently break down and not all stations are accessible. I can do stairs - but not in public with strangers. I’ve had my canes kicked, been pushed, bumped into when I have to stop when a joint subluxes (partially dislocates). Also nerve pain sucks. I can handle muscle, joint, gastrointestinal, and broken bones pain but nerve pain is the worst. Also has had me randomly screaming in public if it comes on suddenly (that’s interesting …). I have a low bar for random strangers blocking accessible seats on transit, kicking my canes / crutches, and especially parking in bus stops. Depending on the day I have a limited amount of time I can stand before medical drama happens - and about zero seconds on any public transit vehicle. Luckily I’m an ex teacher and grew up with my mom being blind so I’m pretty good at being vocal. But it’s exhausting - especially when I’m severely dizzy in pain, migraining, and trying not to pass out. First appointment with my new wheelchair OT at 49Bespoke on May 1st!! First day of Ehlers-Danlos Syndromes awareness month. Thanks for posting that video with Reg last year. ❤ It’s how I found my new OT and wheelchair vendor (Leslam.com). They work with 49 Bespoke.
Grrrr...people blocking accessible seating on transits is so annoying. Strollers mostly, which I understand to a degree, but if strollers are there where are we supposed to go lol? That's awesome that you found Reg and a good OT. He's awesome! Keep me posted on the process and how you like your new chair!
@@EmpoweredParaHi Brittany! I had my assessment with Mayda (OT) and Reg yesterday. Mayda has been an OT/PT for 50 years and was in the first cohort of licensed ADP OTs in the 1980s. OMG It was such a collaborative process! I feel listened to and understood. I’m not being forced to get anti-tips or a calve strap. I was asked if I had enough wheel access to push. I’m really tall from the waist up with super long arms (it’s an Ehlers-Danlos Syndrome trait). Reg put me in a 25” rear wheel chair and it’s such a difference. After an hour sitting in a wheelchair similar to what works for me my left clavicle popped back into place, then my left jaw joint (TMJ) FINALLY went back in place. It’s been tracking wrong for two years and I’m frequently on my “toddler diet” of soft foods like Mac and cheese with peas. Last night was the first time in two years eating hasn’t hurt. 🎉 They stayed 1.5 hours after closing and Chantel drove me to the subway station. Looks like I should have my Tilite ZRA before my birthday on August 12th!
Been in a chair from an early age like you, injury was in 1990 when I was 15 and I new before watching, this was going to start with bladder/bowel. I don't think i've ever met anyone with a spinal injury that if they could fix 1 thing wouldn't start with bladder. Even mild UTI's just make everything an absolute effort because of the lack of energy, we don't even need to touch on bad ones possibly putting one back into a dependent state for days. I just want to add 1 thing to your points on this, even when you manage to end up in a public place that does have appropriate amenities these accessible toilets a good amount of the time are a god damn mess. So I guess this is mainly a thing at event type situations but i've had it also in less chaotic situations but you end up in these filthy rooms, liquid on the floor, stuff strewn around the room and your like how the hell am I going to do this without touching anything including my own wheels because they have just gone through whatever that is on the ground. Some of my worst UTI's have come a day or 2 after using a public toilet even when i'm positive I didn't contaminate anything. 1 quick question, i saw one of your videos where you went through taking vitamin c and d in the morning. I've been using 1000mg vitamin c at night before bed and I hadn't seen those 4000mg ones you take. I'm assuming the c is for UTI prevention, Do you know if that much has any noticable difference? and also whats the vitamin d for? bones? this is something i've never taken and i'm not exactly a day person.
I admit that I didn’t have compassion for the person changing clothes in the only accessible stall in the third bathroom I went to after getting off my flight. Bathroom after bathroom someone was using the handicapped stall as a changing room. By the third and after waiting nearly ten minutes outside, I was not the best version of myself. 15 minutes later…and the 4th bathroom I was able to pee (45 minutes after my flight landed).
By that time I have probably peed my pants and the inconsiderate people who "needed" extra room to change have no idea that they've ruined my day. Nothing more frustrating than people thinking that the extra space is so convenient for them. I am most certainly NOT the best version of myself when I try multiple bathrooms and the accessible stall is taken in each of them by able bodied people.
Regarding being a burden to others. As someone has spent way more time able bodied than needing assistance, the other folks don’t view you nearly as much of a burden as you view yourself. Most folks are more than happy to go out of their way to assist someone with a physical disability. (and the few who aren’t are a$$holes). As for accepting help, I generally don’t like to accept help if it is something I can do even if it would take me much longer. In these situations not accepting help is the one situation where the wheelchair user can be a burden to others. I can get through the door on my own but it is going to slow down the person who is offering to hold open the door for me and who also needs to access the door. I can get my groceries out of the bag hanging on the back of my wheelchair on my own, but if I decline help it is going to slow down the line. Often it is faster to let some push me than to wheel myself. It is rare some is going to view someone else’s chair as a burden or resent a person for being disabled. But the may resent a disabled person for making choices that slow everyone else down by declining help. That is my perspective from both sides of the chair.
@@EmpoweredPara Had a conversation with a teenager at the grocery store who said basically the same thing. Nice kid who was offering to help me reach stuff and I mentioned that I appreciated the offer but i like to do as much as possible on my own. and don't want to burden him. He laughed and told me that I remind him of a girl in his class who is missing one arm. He said she always insisted on during everything on her own including things that very much require two hands. He said the ironic thing was that nobody minded helping her, but it was quite annoying to have to wait for her to do something on her own that anyone of them could do for her in one tenth the time. He said he understood her desire to be independent but but said that her "not wanting to be a burden" made her more of a burden than if she would just accept the help.
@@edl5731 100% truth in many situations. Building confidence and resiliency is an important factor in people wanting to do things for themselves so that they know they are capable when no one is around. But once that skill is mastered, I see no reason not to take the help when it's available, at least occasionally.
Don't want to bring anyone down, but I've been this way for 23 years, due to a motorcycle accident that wasn't my fault, and everything about it is a nightmare come true. When you list all the things that people don't want to be, paralyzed ranks just above dead. Would I stop riding motorcycles if I were suddenly made whole? Of course not, I love riding motorcycles. However, this time I'd use wisdom [wise-dome]. I'd ride where there isn't much traffic, because that's usually where you get hurt. Moral to the story. Be as careful as you can with that wonderful body God gave you. When it works, it's incredible! When it doesn't, it's the polar opposite of incredible! God bless!!! ❤
I'm sorry life has been this rough for you :( Something that helps me appreciate what I can, rather than what I can't do sometimes is to learn a lot about other people's experiences. In my case, I am not paralysed, I watch this channel because I was looking at various accessibility stuff online and found myself curious about what it's like to live with a spinal injury. I have had crippling chronic fatigue since late 2020, likely due to long covid (no proof that the illness that triggered it was covid). There are some things in my life that are much easier than they are for a paralysed person, and some things that are much harder. I barely ever leave the house, can't work (not even part-time), can't talk much, my breathing is labored at all times, heart rate spikes with any type of activity. It's pretty much stopped my life and career dead in its tracks and left very little wiggle room for finding meaning behind. When I have a bad day, I can't even keep my eyes open or the sensory input is exhausting already, so I'm left alone with the boredom and physical discomfort my body is going through. But on the flip side, I can stand when I need to, I don't have issues with dressing myself, most things aren't literally impossible to do for me, it would just be unwise/cause a fatigue crash, so I still have the option in an emergency. Not having to worry about catheters, bowel issues etc. is something I can be happy that I don't have to deal with.
@lachouette_et_le_phoque So sorry to hear that, Lachouette. I wish that I could offer some advice that might help, but it sounds quite complex. I hope that it isn't associated with the "covid" fiasco, as I'm certain that it was manufactured in a lab and systematically released in populated areas for specific purposes. As if mankind didn't have enough problems, man himself is always there to add to the problems. Those who exercise love and compassion will be prepared for the next place that awaits us. I can't imagine what's awaiting those who purposely harm their fellow man. The Bible is full of these warnings. You're certainly in my prayers, Lachouette, hoping you get your miracle in this life, and paradise awaits in the other! 🙏❤️
I am an Aussie (surprise, surprise) that lives in fairly rural and remote areas, and I drive a truck for a living. I only have had limited exposure to people in wheelchairs. There’s one bloke ….. we call him “Wheels”…. that I’ve had a bit to do with. I stand 6’2” and weigh, maybe, 250 Lbs, and if I encounter Wheels up at the bar in the pub, or on the street, I just dunno what to do….. like….stand and talk to him? Squat down? WTF is appropriate? No matter what I do, it seems to me, it’s …..problematic…. so I generally remain standing as I’m an old fart and standing back up from a squat is …..taxing, these days, yet it makes me feel a bit disrespectful, so I literally dunno what the hell to do
lol the fact that you have given it this much thought shows me that you're a compassionate person and in my books that's all it takes. Stand, kneel, sit - do whatever feels right - and just have a normal conversation like you would with anyone else. You're bound to run into a few dicks in wheelchairs who will get offended by whatever it is you choose to do, but don't let that sour you on the rest of us. Most of us are pretty chill and won't care whether you stand or squat when talking to us!
@@EmpoweredPara All of my nieces and nephews have grown up seeing me in a wheelchair and they are always willing to help me when I need it. They are also more attentive to other disabled people.
How was it having kids? Could you feel them kicking? Did you have to have a C section? if so how was the recovery after it? How was it having newborns and toddlers while in a wheelchair? Ok another note, im from Australia and all new house builds (at least in my area) now are required to be built wheelchair accessible. No large steps into doors, wider doorways, no steps into showers, no large shower trays etc etc. They are doing this because the government will pay to modify houses for people in a wheelchair to help them. If they make all new builds accessible it will save them money eventually if the majority of houses must have that. It has been law here for a while that commercial properties must be accessible. When we built my industrial workshop we had to have full accessible areas and our bathroom had to have handrails, had to have a shower and fold down shower table/chair. We couldnt get it passed until it was all done
Sorry ……never having had to interact (much) with anyone with a spinal injury it NEVER occurred to me the whole managing the bowel/bladder etc thing so #1 is extremely important heads up for idiots like me should I ever meet interact with someone in your position. I’m totally socially inept with “normal” people, so I’m absolutely clueless. Thank you and please forgive my inability to word this appropriately. I can tell you’re an incredibly intelligent and caring lady and seems to me a blessing to all those you know. I also know that there are SOME people that see someone in a wheelchair and they start using simple words or shouting or God knows how many other manifestations of their perception, and, thankfully I’m slightly more “with it” than that, but I am incredibly awkward with the few times I have encountered spinal injuried folk, simply coz I’m just stupid and clueless.
I'm still like that sometimes lol. We are all conditioned to feel uncomfortable around things we aren't used to whether it's disability, people of different races or cultures, or anything else we didn't grow up being around a lot. Stick around my channel and you'll learn all the stuff you need to know about SCI....probably more that you ever wanted to know lol! That'll help you feel less weird. Plus I'm awesome lol...so now you have a positive view of people in wheelchairs! Your welcome lol!
@@EmpoweredPara firstly ……girl, you ARE awesomely awesome. Plus, as well as that, whatever other assets or issues or whatever you have going for or agin you, you present a gorgeous personality …..and you ain’t hard on the optic nerve, either!!!!!! Now, I live in the antipodes and I never intend to share a dirty great pencil in the sky wth hundreds of other folk, and I can’t bloody well swim (and not keen on sharks or crocodiles), there’s not a hope in hell of me ever meeting you, much less……ummmmmm…..hit on you…… so anything I say is EXACTLY the unfiltered truth that goes through what masquerades as my mind!!!!! You see, something happened to me when I was born, I think, coz I have bugger all filtering between my grey matter and my orifice. I SOMETIMES shut my big damned mouth, but if I do open it, you’re gonna get exactly whatever I thought……good or bad. I will say this…. your old man is one helluver lucky mong!!!! Anyone with whom you interact is a blessed person. I mostly “listen on the move” (and don’t actually watch videos) so I can only comment extremely rarely, but I PROMISE you, like Big Arnie, “I’ll be back”!!!!!
Hey girl, regarding the disabled bathroom stall. I have an ostomy and having the space and water in the handicapped stall is helpful. My disability is invisible, so give a girl a break 😂
Having more space is nice for you, but those of us in wheelchairs can't use any other stall so while it might be more comfortable for you to use the bigger stall it's not optional for us.
@@EmpoweredPara Thank you for the reply. I will make a better effort to carry water with me as to not need the big stall. You are 100% correct, I can, 99% of the time use a regular stall. One percent of the time (leak) I REALLY need the handicapped stall. I’m sorry you encounter this issue frequently. Must be super frustrating.
@JeannePlantation It is frustrating, but I also understand why people frequently use the accessible stall. I try my best to have compassion for people so that they will have it for me. Thanks for listening and not getting super defensive! Definitely continue to use the accessible stall when your disability requires it:)
You totally hit the right topic. The uti /potty fear stresses me out. Worrying about making noise is also an issue. I can't really relax either. I've had Ms/cfs since 14. (Chair). I understand your pains. It limits so much. ❤ Goodluck
Online dating is challenging being in a wheelchair. Don't assume my ability or think you have to take care of me financially or physically. We all need love in or out of a wheelchair.
Earlier today, on Instagram, someone posted that the absolute hardest part of having an SCI is keeping, and finding, friends. This utterly shocked and depressed me!! Isn't part of the friendship paradigm is "to be there" when your friend needs you? Is this a common occurrence? Do friends really abandon friends when they have a Spinal Cord Injury? And is it harder to make friends? My wife and I are an interabled couple (CP, not SCI) and we don't find this to be true at all. We have tons of both long-time and new friends. Or are my wife and I the odd ones? I sincerely hope not! And, please don't stop rambling. That is part of your style. In my generation, you come across as "the girl next door". Not overly-slick and polished. You do videos from your couch or your chair. A wife. A mother. A teacher. A person going through life with everyday errands, activities, and responsibilities. We can all relate to this (if we ignore the part of being a TV Star and having a wildly successful RUclips channel) Please don't change anything.
@@EmpoweredPara as a non-paralysed person, I'm curious how you notice there's a bed sore developing. It must be a bit tricky since you can't feel it? Do you regularly check all over, or have your husband check?
How about how being in a wheelchair changes people's perception of you in terms of how relevant or attractive they view you and how they might try not to stare ?
Would it be easier to keep up with able-bodied people, and less using of your stamina, if you had a lift in your vehicle, rather than having to break down your chair at every place when you run errands?
20:28 I know what you mean.. but in my case. Sometimes my help forgets to help me. LOL I know that's not funny but, I ask this person if it takes me to long to come out of the bathroom please come and check on me. Well one time not to long ago i was in the bathroom everything was going just fine, No problems at all. Got on and off the toilet no problem at all. Reached to pull my sweatpants up and they had some how twisted around the butt area. How that keeps happening to me i have know idea. But it did that day really badly. Anyway, i said to myself well i will call my help to help me. They should be some where close so this shouldn't take long. Picked up my cellphone and gave this person a call. That person didn't answer at all. Called 2 more times and still that person didn't answer. Well i said to myself looks like i am on my own for sure this time. So i said to myself no problem you got this. What normally takes me about 15 mins to go to the bathroom took 35 mins. I kind of laughed a bit because I remember the person that was there had road with me in my van. So I was thinking they are out there wondering what I was doing. WRONG… That person was out there to busy talking to our church friends and had forgotten all about me. On top of that i found out later that person had their cellphone on mute and never heard me call in the first place. I felt really bad that day. And i was good and tired too. I had to call someone who was still there to let them know i was in the bathroom and by God's grace the person i called was talking to the person who was asked to help me let that person know i was in the bathroom and then that person finally came to help me after i had fixed my own problem.
It may depend on where you live. Here in Switzerland we have a dedicated Rehab Center that treats paralyzed people after accidents. (Never been there) They have paralized people working there to make sure that the preparation for the life after rehab will be as good as possible. But one will stay there for a month or so. LOTS of stuff to learn for such short time. Let's say that they give you a survival package. Hope it's the same in the states.
@@edl5731 True. But then... I can fully understand that not many paralized people work as doctors or care-givers. It doesn't really help if you have your own set of limitations. So what is left are semi retired wheelchair athletes... and dont get me wrong... they had their professional career before doing this, mostly, and / or have another Job. I can only speak out of my perspective, which is, even if i am sitting in a wheelchair for all my life now, and could maybe give some advise, I am super careful doing so. My way of doing things will not work for many people. What helped me is to get in touch with our paralympic athletes. Switzerland is a small country and they happened to have weekly training sessions next to where I used to live. Didn't turn me into an athlete, but gave me a great idea about an independent life in a Wheelchair. So... Try to connect, dont rely on reha only.
Do you find that when people help you they feel that if you don’t accept their help they get cranky with you and then they feel they’ve done a big great deed for the day and you still haven’t got the help you need
Ironically you are not sitting in a WC in this video. That’s good though because it probably helps prevent pressure sores . I am full time WC user due to CP.
@@EmpoweredPara I think sometimes it can be not necessarily a need for a big stall or the wheelchair accessibility, but other things like maybe sensory requirements for autistic people, vertigo/POTS etc. Not that I know much about it. I have a wheelchair that I use to sit down (chronic fatigue), but I don't look disabled at all and I feel paranoid about people calling me out "on my bullshit" sometimes when I have to use the wheelchair service to be able to take a plane flight. Especially when I get up to walk a short flight of stairs or cross some other hurdle - I think many or most people aren't aware there are wheelchair users that are able to walk short distances. Actually no one has been rude to me yet, but I also barely leave the house - maybe I haven't had much of a chance yet.
@lachouette_et_le_phoque people definitely judge ambulatory wheelchair users unfairly. I have many friends that need a wheelchair only sometimes and they feel very self conscious about what people might think.
Sorry, but I have no compassion for newly constructed venues that do not provide adequate wheelchair accessibility. The Philadelphia Flyers are a huge culprit with that. They were sued for accessibility issues at the old Spectrum. Part of the settlement for when they built their new stadium in 1995 was to fully meet all requirements of the ADA. They didn't. They very easily could have reached out to advocacy groups to work with the disabled community and did not. They took an adversarial stance. It's a new building, they can design it to seat as many people as they deem profitable, and configure it in the most profitable way when it is a new construction. On the other hand, there was the Philadelphia Phillies. They reached out to disabled advocacy groups and their stance was literally "We don't want to just meet ADA requirements. We want going to the stadium to be great experience for all of out fans." Does it show, YES!! Accessibility is awesome. Regarding time - I read a quote one time. The thing you lose the most with a disability is time because of how long it takes to do things.
My compassion meter definitely gets used up a lot when new buildings are not accessible. I don't get why new builds wouldn't make it a priority. It costs nothing extra to make things accessible when building new.
@@EmpoweredPara I will say that accessibility is far better now than it was back in 1986 when I was first injured. Advocates have really done a lot of heavy lifting to blaze the trail to make life easier for us.
Hey there, love you, Brittany. I’m surprised in number one. You use the term that you pray something didn’t happen knowing the past videos that you’ve little bit talked about not believing in God who do you pray with or pray to just curious thank you for doing what you do I’mdisabled, but not with a spiral thing for me. It’s neuropathy. I was affected with Agent Orange in the military. Keep up the good work.
I think you're being too kind to business owners who are too damn cheap to have a wheelchair ramp. I don't share your compassion for them. It's a *one time* expense. You deserve to have the same access as everyone else. Does *every* single decision people make in life have to be based so heavily on $$$$. I know in America it does. I know you're in Canada. Hopefully money isn't worshipped quite as much there. Don't even get me started on the dirtbags who park in handicapped spots.
I guess my level of compassion is more for my own mental health than to be kind to others lol. I have to believe that people just don't understand the effects their choices have on people like us, otherwise I'd be so angry everyday. Gotta learn how to advocate without taking things personally, but even after 24 years in a wheelchair I'm still not great at that.
@@EmpoweredPara You have a wonderful outlook and personality. I know it is often not easy to overlook the ignorance, selfishness and rudeness of ablebodied people. You are a model of mature adulthood. I'm not in a wheelchair but it really pushes my buttons when I see an able bodied person park in a spot reserved for someone who really needs it and for someone to say " I'm only going to be a minute." just doesn't cut it for me. I think the fine should be really large. Large enough to hurt.
I love how you're sitting on a couch and not in a chair. I still say you need to look up 'phantom pain'. You DO NOT HAVE THIS. AMPUTEES have this. YOU HAVE NERVE PAIN....totally different.
ooooor you could have googled this, the first result that came up for me is a scientific article by the National Library of Medicine stating "Phantom pain can be defined as “[p]ain referring to a missing part of the body or to the paralyzed part of the body after a total spinal lesion” (Nortvedt 2006, p. 13)." so I don't see why she can't call it phantom pain.
@morgancalvi6675 please site your sources of information so that I can look it up. Willing to learn if I'm wrong, but a degree in biology, 24 years in a wheelchair, lots of research and reading, and multiple doctors tell me my sensation and pain in my legs is phantom since I can't actually feel them.
You don't ramble at all. Those are musings, thoughts and insights. You're just a bright and beautiful light. Thank you for sharing your story with us all. Love from New Zealand.
Thank you 😊.
Man, you started off with my daily nightmare. I have to go to dinner with my Brothers and their wives and my Sister and her husband tonight, I have been stressing all day. It will be the first time they have had to deal with me being in a wheelchair, My stress levels are through the roof right now. The whole video Is right on point. I still have so much to learn.
Fantastic list. Really well thought out and on point. There are a couple that I am sure you have experienced but have not mentioned here. 1. The look of pity or disgust in other's eyes. 2. Asking you extremely inappropriate questions about your life. 3. People directing questions about you to the person you are with (ablebodied).
With ADHD and mental health illnesses, I have lots of struggles too. _Sometimes_ we need to talk about it. Not to play victims, but to ventilate.
*Thank you for sharing* about your life!
You just amaze me with your honesty, your empathy, and your kindness to others! You shared this from your heart and it shows. This was such an encouragement to me and I think that you are a lovely person!
Thank you so much. You're comment made my day! I try my best to be understanding, mostly for my own mental health !
Number one for me by FAR is never being at eye level with anyone. Ive never interacted with anybody face to face, I was paralyzed when I was 8 years old so my eye level now as a 28 year old, is LOWER then it was when I had my accident. Sometimes it just SUCKS! Like on a trip, talking to all the people at the airport, checking into the hotel ect, your just staring straight up at people towering over you all day. trying to get though a crowd and people don’t even see you, And every other person looks down and goes “oh sorry” over and over, it’s really humiliating. some days I just REALLY want to stand up.
Your videos are my favorite. They helped me mentally adjust in the mornings when I was new in the chair and didn't know anyone else like me. It was like waking up every morning INTO a nightmare.
They've helped me alotttttt over this past year. This Sunday will be my 1st year anniversary of being on wheels. Thank you!!
One year. It's such a surreal first anniversary experience. Still disbelief that it happened and yet a settling in of acceptance. This past year is proof you are stronger than you ever believed. It's downhill from here!
You’re such a nice thoughtful person.
This is a great video, thank you for expressing how frustrating life with a SCI can be. Keep doing great things on this channel, it is so helpful. I am paralyzed completely at T4 since 2017 and don't always explain to family and friends how challenging daily life can be with SCI. I am going to share your video with them and hope it encourages more communication. Another situation that can be frustrating while being out and about in a wheelchair is when people you are trying to engage with won't look directly at you. I was at a restaurant with a friend and the server would not look at me when I ordered. I've also had servers ask my friends 'what does she want' like I also can't hear and can't express what I would like to eat.
We definitely get treated like children often, which is annoying.
It's hard to express how challenging life with a SCI is to our loved ones. We don't want to make them worry or, worse, annoy them with our complaining, so we often internalize how hard things are. I still struggle with this even after 24 years. I hope my video helps open those lines of communication for you!
I was in a wheelchair for awhile so yes i can for sure relate to what you shared!
Dang Brit you hit this right on the head today.
This is so poignant.
I’ve been struggling with some of these issues you’ve talked about today.
Chronic pain drags you down at times, and simply just sucks.
There are bright days to, not all gloomy.
Bowl bladder issues are the pits and wouldn’t wish this on anyone.
But we struggle and persevere and never give up ( ok for a few minutes sometimes) then get passed the rough patch and see there’s so much to live for.
They said it would be easy, we carry on.
My hats off you my lovely wife of 38 years for all of her strength and commitment and loyalty.
She’s my bright start, who goes through this with me day after day.
Our care partners deserve so much credit.
Sorry for being long winded.
Hope all is well with you and your family.
You do an awesome job with all you do Brit to educate.
Thank you.,
Phil
Love all of this Phil! We struggle and yet we preserver. Our support systems definitely make the journey more enjoyable and tolerable!
@@EmpoweredPara Brit so very true. I can’t thank you enough for all you share here. Today’s post came at a low point, it just made me think how grateful I am to have the support system I have.
Yes we do have to dig deep at times but we get through it,
You’re honest approach to your videos make them so relatable, for one they’ve helped me so much.
No matter how hard it might seem we have so much to give to others.
Huge hug to you of thanks.
@keyup2626 Grateful to have this amazing youtube community as part of my support system. Thanks for being a part of it!
Hey, I enjoy your videos very much. I’ve been in a chair since I was 15. Anyway, the one you mentioned about wheelchair seating at concerts is one I totally agree with. It’s not that there isn’t enough seating, but here in the US a person doesn’t have to show proof of bringing in a wheelchair to buy those seats. So, what you’ll see are people people buying those seats either because it’s a sold out show and that’s all that’s left or they don’t want a nose bleed seat and will buy a wheelchair area seat to be closer.
Yeah it's not enforced here either and it's super annoying
@@EmpoweredParaWTF?? That is sooo wrong.
We had a huge scare last week. My 16 yr old son had a friend pull his chair as he sat down at work, just joking. My son fell back, hit his head and neck in a horrible position hard on concrete. He had an obvious concussion, with dizziness, vomiting, etc. In the Pediatric ER, a tragic case came in with all staff busy and police all in there so we had to wait many hours. When the dr finally came in, he was furious the nurses hadn't put a collar on my son. As the dr pressed on different parts of his neck, one spot had a lot of pain. The dr looked panicked, held my son's head still, screaming "Don't move at all", calling for a collar. We were there all night into the next day with them even having specialist read his xrays and CT scan to be completely sure, but neck was ok and just a concussion. I just kept thinking of your videos that whole night, trying to remind myself no matter what happens, we'll survive and be ok.
I hate when kids do that. They have no idea how dangerous that is. I'm so glad my videos helped you stay positive in the midst of the uncertainty, but I am even more glad your son is ok and you only had to imagine what you might do instead of it being a reality. Very scary for you no doubt!
@@EmpoweredPara Thank you. I swear your videos and seeing your life experience kept me sane that whole hospital stay while we waited for answers. I'm the one who panics with anything medical with my kids, especially since my husband died, as he used to calm me. Even my son commented that he was a bit shocked I managed to stay so calm and positive that we could handle any scenario lol. He was expecting freak-out mom.
Your so great.. It is absolutely amazing how well you deal with it…
I've has 24 years to learn !
thanks for sharing this!
The worst is not being included...just dismissed and tossed aside. There was so many 'friends' I THOUGHT I had...but since being a quad and an amputee...one person actually said to me: 'I'd be terrified to see you drive, you only have one leg' or 'you're in a wheelchair, & I have stairs'...even my team with search and rescue doesn't include me in searches (I'm in logistics anyway)...but now they just dismiss me. That really hurts.
Yeah it does. People don't realize they are one decision away from a disability and that they could br the next one in our shoes.
@@EmpoweredPara exactly...and that guy saying 'I'd be terrified to see you drive...what if you hit a deer?' Well, my reactions would be pretty much the same as his...slam on the brakes and swerve. I mean if you ask me, that was pretty insensitive of him. The thing to do is not to have anything to do with him...but I kind of depend on him to go get my mail and shopping. I will be doing things differently this month and I do plan on moving at the end of the month.
Your forthrightness makes me wish I DID know you in person and I am immediately drawn to you….in an appropriate manner!!!!!!
You also have reminded me to count my blessings that I don’t need to deal with ANY of your …..challenges….. either personally or having to adjust to your ……differences …. In needs and requirements.
I don’t see you (or anybody else) as being “disabled”, per se, but rather with different challenges in life. Actually, in this one short clip I find myself inspired and in awe.
I haven’t viewed all that much of this clip, yet but I will recount something else that leaves me feeling awkward and inadequate around spinal injured folk…..
Next message!!!
I agree 100% with the bowel and bladder routine. It is different for everybody with an SCI. I'm a C6/7 quadriplegic and my needs are different than yours in addition I am a man which makes a woman's bladder routine different than a gentleman's little bit different as well. It sucks for both of us.
The constant pain as you talk about phantom or real is a big issue for me as well. Constantly concerned with your fluid intake, insuring the urinary devices are properly functioning as you state are constantly on your mind. You are more fortunate than I am. Due to my injury I get up in the chair around 6:30 AM and don't get out of it until I go to bed around 9:30 to 10:00 PM at night. Because I have gotten older it's difficult to sit someplace else also I've lost my flexibility causing more problems.
The issue of accessible structures primarily should only exist for old construction. I do not know about Canada but in the US we have The ADA which went into effect in 1992. Also please keep in mind new construction to be made ADA compliant or to put in a sprinkler system is less than 2% of the entire total cost. People have a misconception that making a structure ADA compliant this costly. It is actually very inexpensive.
Being able to do or not do things is the biggest hurdle. In 1977 when I was 17 and able bodied I took care of 20 lawns, had a paper route, was a janitor at a grade school, and had tons of money coming in for that era. When I broke my neck I had $9,000.00 in the bank. I learned how to do a lot of carpentry and repair work from my dad and now I must pay for all of it even though I know how to do it and that is something that is extremely frustrating. Particularly because of the lack of hand function.
I agree 100% with the public accommodations issue. Six or seven of my friends wanna go to a baseball game The ADA section allows me one other person. Tip think ahead and get the row of seats in front of the ADA section so the whole gang can be together.
You are spot on with lack of ADA access to houses. It will never get there. I have some friends my age [64] who just moved into an all one level home so when they get old they already have their ADA home. Big thing is my city built in hills hard to get any place.
TIME TIME EXTRA TIME REAL BIG . . .
The help issue is big we need exercise too when it is not super cold out. Most people are good.
Thank you for sharing your experiences with these challenging situations. It is so frustrating knowing we have to pay for things that we were capable of doing at one time.
@@EmpoweredPara Welcome, life is what we make it.
Thank you for all of your insight, it really helped me out a lot❤
I think that list it's bigger and harder than how initialy looks; you lift the spirit of able people and i think than people with disabilities too with your way of present the reality.
I try my best to do that!
Well said.❤️
I dont have a spinal cord injury, but I used to hang out with a girl who did (from an auto accident). I learned from her a lot about what its like to be paraplegic and in a wheelchair.
Back in the 1980s, a lot less places had ramps or were accessible, and that was a problem for her.
She liked to go to a live music venue which unfortunately had 3 steps to the entrance, and I volunteered to go with her and get her wheelchair up and down the steps. When she needed assistance she would ask, I didnt automatically assume she needed help as she was very independent, and had no issues transferring in and out of her wheelchair.
.At first I didnt know that having a spinal cord injury meant anything other than she couldnt move her legs, and had to use a wheelchair but I learned there was so much more to it as time went on, especially issues with bowels and bladder. She wore a catheter full time with a legbag and wasnt embarrassed about explaining it although it did make me a little uncomfortable when she talked about it.
She told me to ask her about anything I wanted to know which I thought was cool.
This was long before the Internet, so it wasnt easy to learn things like what she told me and whats in this video.
Yeah, it was more challenging to be disabled back then!
Wow I could barely stand having to sit out in gym class when I was in school. May the future be good to you.
Although I am not paralyzed, I have been a full-time wheelchair user for 15 years due to an incomplete spinal cord injury that happened during neck surgery. One thing I would add to your list that sucks is air travel - it’s a combination of multiple other points you mentioned all rolled into one: strategizing about bathroom use, waiting on help, and general lack of accessibility.
Yep that totally could have made the list!
Hey Brittney, that was one of the best informative videos I've seen, I agree with all your points, especially 5/6/7, I think that not being able to be part of things with friends and family can lead to an inner loneliness too, even though you're with others you feel like an outsider looking in. Another thing that drives me crazy are spasms, I have them off and on all day 24/7. But thanks, so helpful to read that others are going through the same thing. Definitely not a ramble, who said you talk a lot 🤔😂 Brilliant
Thank you Bob! Spasms are definitely brutal for some people! Mine are pretty mild, so they didn't make my list, but I know so many people for whom spasm would be in the top 5.
Great list..i can add a few.. Sabotage..
Extortion... Abuse...
Can you explain these? Ive been in a wheelchair for 3 months i want to be prepared for the things i have to face
Those comments about communication ring true in our family. My wife internalizes them. Just tonight, I looked over and she was grimacing in pain. (She has CP, not SCI, but there are similarities) I had to ask her what the problem was - her leg was in pain at a recent common spot. She reluctantly told me. She really needs to watch this video. The issue is a combination of “not wanting to worry me” and the fact that she has told me that she hates having to ask me to take her to repeated visits to her Orthotist. I try to assure her that taking her is never a problem - obviously I knew when we got married that she was disabled and things like this are expected and that is fine. (I LOVE my wife!) Sometimes I think she needs someone like you to explain this to her. My mind goes to your long-ago video you and your husband did on “Interabled Couple” and his 6-month contemplation, and that helps me. Now I need something to convince her that this is all normal.
No matter where wheelchair users live, they have the same problems everywhere... I think your 10 is a good one 👍
Yes to all of these. A couple more I thought of: Places that claim to be accessible but aren’t (~30% of ‘handicap’ stalls, ‘accessible’ trails with gravel and a significant slope); place that are CLOSE to accessible but aren’t - I’ve only been a wheelchair user for a year and a half and there’s so many shops and cafes and restaurants in my area where the place would be accessible except for one little step, or the product displays are in the way, or they have a ramp but it’s covered with snow or the door is too heavy etc.
I also find rolling through parking lots and crossing streets absolutely terrifying. I’m very tall and went through most of my life being very visible to cars when moving through traffic, now I’m like four feet tall and afraid someone will back up into me or not see me crossing so I often will just avoid places where I have to cross a busy street or if it’s after dark. I never had to think about that when I was able bodied.
And yeah, getting my chair in and out of the car by myself requires so much effort that I try to only do one task out of the house each day if possible. We really need better transportation options and/or motorized lifts etc to be covered by insurance just like our chairs are, so we can actually leave the house on our own.
Love the honesty and openness Britney! Your videos have been a godsend for me over this past year and a half.
Yes to all of those! It definitely takes getting used to when going from an adult height to a small child's height. I always watch for the white back up lights when wheeling in a parking lot but it's still scary!
I didn't mind the rambling. I enjoyed the video!
Thank goodness there are enough of you that can stand my rambling lol!
@@EmpoweredPara lol, I enjoy your videos. It always makes my day to see that you uploaded a video.
Ok had to come. the very end cracked me up.
lol thanks for sticking around till the end!
Hello, can you make a video about period panties? For example Wuka, Modibidi, Knix
As a part time temporary wheel chair user my list is doors, stairs and hills
No - it was informative and entertaining rambling !
lol well thanks 😊
Ambulatory wheelchair user here currently going through life without a wheelchair.
I hear you about inaccessibility of places. Here in Toronto, the elevators at the subway stations frequently break down and not all stations are accessible.
I can do stairs - but not in public with strangers. I’ve had my canes kicked, been pushed, bumped into when I have to stop when a joint subluxes (partially dislocates).
Also nerve pain sucks. I can handle muscle, joint, gastrointestinal, and broken bones pain but nerve pain is the worst. Also has had me randomly screaming in public if it comes on suddenly (that’s interesting …).
I have a low bar for random strangers blocking accessible seats on transit, kicking my canes / crutches, and especially parking in bus stops. Depending on the day I have a limited amount of time I can stand before medical drama happens - and about zero seconds on any public transit vehicle.
Luckily I’m an ex teacher and grew up with my mom being blind so I’m pretty good at being vocal. But it’s exhausting - especially when I’m severely dizzy in pain, migraining, and trying not to pass out.
First appointment with my new wheelchair OT at 49Bespoke on May 1st!! First day of Ehlers-Danlos Syndromes awareness month.
Thanks for posting that video with Reg last year. ❤
It’s how I found my new OT and wheelchair vendor (Leslam.com). They work with 49 Bespoke.
Grrrr...people blocking accessible seating on transits is so annoying. Strollers mostly, which I understand to a degree, but if strollers are there where are we supposed to go lol?
That's awesome that you found Reg and a good OT. He's awesome! Keep me posted on the process and how you like your new chair!
@@EmpoweredParaHi Brittany!
I had my assessment with Mayda (OT) and Reg yesterday.
Mayda has been an OT/PT for 50 years and was in the first cohort of licensed ADP OTs in the 1980s.
OMG It was such a collaborative process! I feel listened to and understood. I’m not being forced to get anti-tips or a calve strap. I was asked if I had enough wheel access to push. I’m really tall from the waist up with super long arms (it’s an Ehlers-Danlos Syndrome trait). Reg put me in a 25” rear wheel chair and it’s such a difference.
After an hour sitting in a wheelchair similar to what works for me my left clavicle popped back into place, then my left jaw joint (TMJ) FINALLY went back in place. It’s been tracking wrong for two years and I’m frequently on my “toddler diet” of soft foods like Mac and cheese with peas. Last night was the first time in two years eating hasn’t hurt. 🎉
They stayed 1.5 hours after closing and Chantel drove me to the subway station.
Looks like I should have my Tilite ZRA before my birthday on August 12th!
I'm not worried about getting a UTI. I see some flakes in my urine from time to time, but I don't worry about it.
Been in a chair from an early age like you, injury was in 1990 when I was 15 and I new before watching, this was going to start with bladder/bowel. I don't think i've ever met anyone with a spinal injury that if they could fix 1 thing wouldn't start with bladder. Even mild UTI's just make everything an absolute effort because of the lack of energy, we don't even need to touch on bad ones possibly putting one back into a dependent state for days.
I just want to add 1 thing to your points on this, even when you manage to end up in a public place that does have appropriate amenities these accessible toilets a good amount of the time are a god damn mess. So I guess this is mainly a thing at event type situations but i've had it also in less chaotic situations but you end up in these filthy rooms, liquid on the floor, stuff strewn around the room and your like how the hell am I going to do this without touching anything including my own wheels because they have just gone through whatever that is on the ground. Some of my worst UTI's have come a day or 2 after using a public toilet even when i'm positive I didn't contaminate anything.
1 quick question, i saw one of your videos where you went through taking vitamin c and d in the morning. I've been using 1000mg vitamin c at night before bed and I hadn't seen those 4000mg ones you take. I'm assuming the c is for UTI prevention, Do you know if that much has any noticable difference? and also whats the vitamin d for? bones? this is something i've never taken and i'm not exactly a day person.
I admit that I didn’t have compassion for the person changing clothes in the only accessible stall in the third bathroom I went to after getting off my flight. Bathroom after bathroom someone was using the handicapped stall as a changing room. By the third and after waiting nearly ten minutes outside, I was not the best version of myself. 15 minutes later…and the 4th bathroom I was able to pee (45 minutes after my flight landed).
By that time I have probably peed my pants and the inconsiderate people who "needed" extra room to change have no idea that they've ruined my day. Nothing more frustrating than people thinking that the extra space is so convenient for them. I am most certainly NOT the best version of myself when I try multiple bathrooms and the accessible stall is taken in each of them by able bodied people.
Regarding being a burden to others. As someone has spent way more time able bodied than needing assistance, the other folks don’t view you nearly as much of a burden as you view yourself. Most folks are more than happy to go out of their way to assist someone with a physical disability. (and the few who aren’t are a$$holes).
As for accepting help, I generally don’t like to accept help if it is something I can do even if it would take me much longer. In these situations not accepting help is the one situation where the wheelchair user can be a burden to others. I can get through the door on my own but it is going to slow down the person who is offering to hold open the door for me and who also needs to access the door. I can get my groceries out of the bag hanging on the back of my wheelchair on my own, but if I decline help it is going to slow down the line. Often it is faster to let some push me than to wheel myself. It is rare some is going to view someone else’s chair as a burden or resent a person for being disabled. But the may resent a disabled person for making choices that slow everyone else down by declining help. That is my perspective from both sides of the chair.
Interesting perspective!
@@EmpoweredPara Had a conversation with a teenager at the grocery store who said basically the same thing. Nice kid who was offering to help me reach stuff and I mentioned that I appreciated the offer but i like to do as much as possible on my own. and don't want to burden him. He laughed and told me that I remind him of a girl in his class who is missing one arm. He said she always insisted on during everything on her own including things that very much require two hands. He said the ironic thing was that nobody minded helping her, but it was quite annoying to have to wait for her to do something on her own that anyone of them could do for her in one tenth the time. He said he understood her desire to be independent but but said that her "not wanting to be a burden" made her more of a burden than if she would just accept the help.
@@edl5731 100% truth in many situations. Building confidence and resiliency is an important factor in people wanting to do things for themselves so that they know they are capable when no one is around. But once that skill is mastered, I see no reason not to take the help when it's available, at least occasionally.
Don't want to bring anyone down, but I've been this way for 23 years, due to a motorcycle accident that wasn't my fault, and everything about it is a nightmare come true. When you list all the things that people don't want to be, paralyzed ranks just above dead. Would I stop riding motorcycles if I were suddenly made whole? Of course not, I love riding motorcycles. However, this time I'd use wisdom [wise-dome]. I'd ride where there isn't much traffic, because that's usually where you get hurt.
Moral to the story. Be as careful as you can with that wonderful body God gave you. When it works, it's incredible! When it doesn't, it's the polar opposite of incredible!
God bless!!! ❤
I'm sorry life has been this rough for you :(
Something that helps me appreciate what I can, rather than what I can't do sometimes is to learn a lot about other people's experiences. In my case, I am not paralysed, I watch this channel because I was looking at various accessibility stuff online and found myself curious about what it's like to live with a spinal injury. I have had crippling chronic fatigue since late 2020, likely due to long covid (no proof that the illness that triggered it was covid). There are some things in my life that are much easier than they are for a paralysed person, and some things that are much harder.
I barely ever leave the house, can't work (not even part-time), can't talk much, my breathing is labored at all times, heart rate spikes with any type of activity. It's pretty much stopped my life and career dead in its tracks and left very little wiggle room for finding meaning behind. When I have a bad day, I can't even keep my eyes open or the sensory input is exhausting already, so I'm left alone with the boredom and physical discomfort my body is going through.
But on the flip side, I can stand when I need to, I don't have issues with dressing myself, most things aren't literally impossible to do for me, it would just be unwise/cause a fatigue crash, so I still have the option in an emergency. Not having to worry about catheters, bowel issues etc. is something I can be happy that I don't have to deal with.
@lachouette_et_le_phoque
So sorry to hear that, Lachouette. I wish that I could offer some advice that might help, but it sounds quite complex. I hope that it isn't associated with the "covid" fiasco, as I'm certain that it was manufactured in a lab and systematically released in populated areas for specific purposes. As if mankind didn't have enough problems, man himself is always there to add to the problems. Those who exercise love and compassion will be prepared for the next place that awaits us. I can't imagine what's awaiting those who purposely harm their fellow man. The Bible is full of these warnings. You're certainly in my prayers, Lachouette, hoping you get your miracle in this life, and paradise awaits in the other! 🙏❤️
I am an Aussie (surprise, surprise) that lives in fairly rural and remote areas, and I drive a truck for a living. I only have had limited exposure to people in wheelchairs. There’s one bloke ….. we call him “Wheels”…. that I’ve had a bit to do with.
I stand 6’2” and weigh, maybe, 250 Lbs, and if I encounter Wheels up at the bar in the pub, or on the street, I just dunno what to do….. like….stand and talk to him? Squat down? WTF is appropriate? No matter what I do, it seems to me, it’s …..problematic…. so I generally remain standing as I’m an old fart and standing back up from a squat is …..taxing, these days, yet it makes me feel a bit disrespectful, so I literally dunno what the hell to do
lol the fact that you have given it this much thought shows me that you're a compassionate person and in my books that's all it takes. Stand, kneel, sit - do whatever feels right - and just have a normal conversation like you would with anyone else. You're bound to run into a few dicks in wheelchairs who will get offended by whatever it is you choose to do, but don't let that sour you on the rest of us. Most of us are pretty chill and won't care whether you stand or squat when talking to us!
I hope, according to the disability mobility access program, if I deal in the future and help from disability justice
Some able bodied people feel blessed to be able to help someone with a disability.
So true!
@@EmpoweredPara All of my nieces and nephews have grown up seeing me in a wheelchair and they are always willing to help me when I need it. They are also more attentive to other disabled people.
How was it having kids? Could you feel them kicking? Did you have to have a C section? if so how was the recovery after it?
How was it having newborns and toddlers while in a wheelchair?
Ok another note, im from Australia and all new house builds (at least in my area) now are required to be built wheelchair accessible. No large steps into doors, wider doorways, no steps into showers, no large shower trays etc etc. They are doing this because the government will pay to modify houses for people in a wheelchair to help them. If they make all new builds accessible it will save them money eventually if the majority of houses must have that.
It has been law here for a while that commercial properties must be accessible. When we built my industrial workshop we had to have full accessible areas and our bathroom had to have handrails, had to have a shower and fold down shower table/chair. We couldnt get it passed until it was all done
Sorry ……never having had to interact (much) with anyone with a spinal injury it NEVER occurred to me the whole managing the bowel/bladder etc thing so #1 is extremely important heads up for idiots like me should I ever meet interact with someone in your position. I’m totally socially inept with “normal” people, so I’m absolutely clueless.
Thank you and please forgive my inability to word this appropriately. I can tell you’re an incredibly intelligent and caring lady and seems to me a blessing to all those you know.
I also know that there are SOME people that see someone in a wheelchair and they start using simple words or shouting or God knows how many other manifestations of their perception, and, thankfully I’m slightly more “with it” than that, but I am incredibly awkward with the few times I have encountered spinal injuried folk, simply coz I’m just stupid and clueless.
I'm still like that sometimes lol. We are all conditioned to feel uncomfortable around things we aren't used to whether it's disability, people of different races or cultures, or anything else we didn't grow up being around a lot. Stick around my channel and you'll learn all the stuff you need to know about SCI....probably more that you ever wanted to know lol! That'll help you feel less weird. Plus I'm awesome lol...so now you have a positive view of people in wheelchairs! Your welcome lol!
@@EmpoweredPara firstly ……girl, you ARE awesomely awesome. Plus, as well as that, whatever other assets or issues or whatever you have going for or agin you, you present a gorgeous personality …..and you ain’t hard on the optic nerve, either!!!!!!
Now, I live in the antipodes and I never intend to share a dirty great pencil in the sky wth hundreds of other folk, and I can’t bloody well swim (and not keen on sharks or crocodiles), there’s not a hope in hell of me ever meeting you, much less……ummmmmm…..hit on you…… so anything I say is EXACTLY the unfiltered truth that goes through what masquerades as my mind!!!!! You see, something happened to me when I was born, I think, coz I have bugger all filtering between my grey matter and my orifice. I SOMETIMES shut my big damned mouth, but if I do open it, you’re gonna get exactly whatever I thought……good or bad.
I will say this…. your old man is one helluver lucky mong!!!! Anyone with whom you interact is a blessed person.
I mostly “listen on the move” (and don’t actually watch videos) so I can only comment extremely rarely, but I PROMISE you, like Big Arnie, “I’ll be back”!!!!!
Hey girl, regarding the disabled bathroom stall. I have an ostomy and having the space and water in the handicapped stall is helpful. My disability is invisible, so give a girl a break 😂
Having more space is nice for you, but those of us in wheelchairs can't use any other stall so while it might be more comfortable for you to use the bigger stall it's not optional for us.
@@EmpoweredPara Thank you for the reply. I will make a better effort to carry water with me as to not need the big stall. You are 100% correct, I can, 99% of the time use a regular stall. One percent of the time (leak) I REALLY need the handicapped stall. I’m sorry you encounter this issue frequently. Must be super frustrating.
@JeannePlantation It is frustrating, but I also understand why people frequently use the accessible stall. I try my best to have compassion for people so that they will have it for me. Thanks for listening and not getting super defensive! Definitely continue to use the accessible stall when your disability requires it:)
You totally hit the right topic. The uti /potty fear stresses me out. Worrying about making noise is also an issue.
I can't really relax either. I've had Ms/cfs since 14. (Chair). I understand your pains. It limits so much. ❤ Goodluck
sigh.....at least we are together in our struggles ❤️. Solidarity 😃 .
Online dating is challenging being in a wheelchair. Don't assume my ability or think you have to take care of me financially or physically. We all need love in or out of a wheelchair.
Earlier today, on Instagram, someone posted that the absolute hardest part of having an SCI is keeping, and finding, friends. This utterly shocked and depressed me!! Isn't part of the friendship paradigm is "to be there" when your friend needs you? Is this a common occurrence? Do friends really abandon friends when they have a Spinal Cord Injury? And is it harder to make friends? My wife and I are an interabled couple (CP, not SCI) and we don't find this to be true at all. We have tons of both long-time and new friends. Or are my wife and I the odd ones? I sincerely hope not!
And, please don't stop rambling. That is part of your style. In my generation, you come across as "the girl next door". Not overly-slick and polished. You do videos from your couch or your chair. A wife. A mother. A teacher. A person going through life with everyday errands, activities, and responsibilities. We can all relate to this (if we ignore the part of being a TV Star and having a wildly successful RUclips channel) Please don't change anything.
🤔over stress ☹️💐
Do you get bed sores and if you do how do you get rid of them? I have a really hard time. 😮❤
I've had a few very small ones and o got rid of them my just staying off of them. But they were all stage 1 or 2.
@@EmpoweredPara as a non-paralysed person, I'm curious how you notice there's a bed sore developing. It must be a bit tricky since you can't feel it? Do you regularly check all over, or have your husband check?
@lachouette_et_le_phoque yes I check with a mirror everyday:) I also get me hubby to check from time to time
How about how being in a wheelchair changes people's perception of you in terms of how relevant or attractive they view you and how they might try not to stare ?
Would it be easier to keep up with able-bodied people, and less using of your stamina, if you had a lift in your vehicle, rather than having to break down your chair at every place when you run errands?
Not really lol
@@EmpoweredPara Hmmm, then I’d have to say that I think you are doing quite well, and accomplishing a lot. I wish I had your drive and commitment.
You didn't mentioned pressure points
yep that's definitely a big one!
20:28 I know what you mean.. but in my case. Sometimes my help forgets to help me. LOL I know that's not funny but, I ask this person if it takes me to long to come out of the bathroom please come and check on me. Well one time not to long ago i was in the bathroom everything was going just fine, No problems at all. Got on and off the toilet no problem at all. Reached to pull my sweatpants up and they had some how twisted around the butt area. How that keeps happening to me i have know idea. But it did that day really badly. Anyway, i said to myself well i will call my help to help me. They should be some where close so this shouldn't take long. Picked up my cellphone and gave this person a call. That person didn't answer at all. Called 2 more times and still that person didn't answer. Well i said to myself looks like i am on my own for sure this time. So i said to myself no problem you got this. What normally takes me about 15 mins to go to the bathroom took 35 mins. I kind of laughed a bit because I remember the person that was there had road with me in my van. So I was thinking they are out there wondering what I was doing. WRONG… That person was out there to busy talking to our church friends and had forgotten all about me. On top of that i found out later that person had their cellphone on mute and never heard me call in the first place. I felt really bad that day. And i was good and tired too. I had to call someone who was still there to let them know i was in the bathroom and by God's grace the person i called was talking to the person who was asked to help me let that person know i was in the bathroom and then that person finally came to help me after i had fixed my own problem.
Do they go over this stuff in rehab?
It may depend on where you live. Here in Switzerland we have a dedicated Rehab Center that treats paralyzed people after accidents. (Never been there) They have paralized people working there to make sure that the preparation for the life after rehab will be as good as possible. But one will stay there for a month or so. LOTS of stuff to learn for such short time. Let's say that they give you a survival package.
Hope it's the same in the states.
@@marcofacen9564 Problem with most rehab employees is they are able bodied.
@@edl5731 True. But then... I can fully understand that not many paralized people work as doctors or care-givers. It doesn't really help if you have your own set of limitations. So what is left are semi retired wheelchair athletes... and dont get me wrong... they had their professional career before doing this, mostly, and / or have another Job.
I can only speak out of my perspective, which is, even if i am sitting in a wheelchair for all my life now, and could maybe give some advise, I am super careful doing so. My way of doing things will not work for many people.
What helped me is to get in touch with our paralympic athletes. Switzerland is a small country and they happened to have weekly training sessions next to where I used to live. Didn't turn me into an athlete, but gave me a great idea about an independent life in a Wheelchair. So... Try to connect, dont rely on reha only.
Do you find that when people help you they feel that if you don’t accept their help they get cranky with you and then they feel they’ve done a big great deed for the day and you still haven’t got the help you need
No that hasn't happened to me:)
One thing that pisses me off is a person who takes up a handicap stall just to take a shit, or they just don't care or both.
It's always the shit stall!!
Ironically you are not sitting in a WC in this video. That’s good though because it probably helps prevent pressure sores . I am full time WC user due to CP.
Gotta change up the scenery for you guys lol!
making a pee video using an airplane catheter will definitely be different from the pee video you made before
Children of disabled people are usually more compassionate towards other disabled people.
rambling is ok.
lol I hope so!
I'm disabled, but I don't look like i am. I dare someone to tell me not to use the bathroom.
You have a disability that requires the need for the big bathroom stall?
@@EmpoweredPara I think sometimes it can be not necessarily a need for a big stall or the wheelchair accessibility, but other things like maybe sensory requirements for autistic people, vertigo/POTS etc. Not that I know much about it.
I have a wheelchair that I use to sit down (chronic fatigue), but I don't look disabled at all and I feel paranoid about people calling me out "on my bullshit" sometimes when I have to use the wheelchair service to be able to take a plane flight. Especially when I get up to walk a short flight of stairs or cross some other hurdle - I think many or most people aren't aware there are wheelchair users that are able to walk short distances. Actually no one has been rude to me yet, but I also barely leave the house - maybe I haven't had much of a chance yet.
@lachouette_et_le_phoque people definitely judge ambulatory wheelchair users unfairly. I have many friends that need a wheelchair only sometimes and they feel very self conscious about what people might think.
Sorry, but I have no compassion for newly constructed venues that do not provide adequate wheelchair accessibility. The Philadelphia Flyers are a huge culprit with that. They were sued for accessibility issues at the old Spectrum. Part of the settlement for when they built their new stadium in 1995 was to fully meet all requirements of the ADA. They didn't. They very easily could have reached out to advocacy groups to work with the disabled community and did not. They took an adversarial stance. It's a new building, they can design it to seat as many people as they deem profitable, and configure it in the most profitable way when it is a new construction.
On the other hand, there was the Philadelphia Phillies. They reached out to disabled advocacy groups and their stance was literally "We don't want to just meet ADA requirements. We want going to the stadium to be great experience for all of out fans." Does it show, YES!! Accessibility is awesome.
Regarding time - I read a quote one time. The thing you lose the most with a disability is time because of how long it takes to do things.
My compassion meter definitely gets used up a lot when new buildings are not accessible. I don't get why new builds wouldn't make it a priority. It costs nothing extra to make things accessible when building new.
I recall that the Spectrum was difficult for the able bodied. It would have been a nightmare for someone with any sort of disability.
@@EmpoweredPara I will say that accessibility is far better now than it was back in 1986 when I was first injured. Advocates have really done a lot of heavy lifting to blaze the trail to make life easier for us.
Hey there, love you, Brittany. I’m surprised in number one. You use the term that you pray something didn’t happen knowing the past videos that you’ve little bit talked about not believing in God who do you pray with or pray to just curious thank you for doing what you do I’mdisabled, but not with a spiral thing for me. It’s neuropathy. I was affected with Agent Orange in the military. Keep up the good work.
I don't believe in God but I believe in a universal concisous and energy that can be harnessed. So I pray to the energy lol
When you’re in a wheelchair. You can’t do anything spontaneous.
That was one that I considered putting on the list! Saving it for another video.
I think you're being too kind to business owners who are too damn cheap to have a wheelchair ramp. I don't share your compassion for them. It's a *one time* expense. You deserve to have the same access as everyone else. Does *every* single decision people make in life have to be based so heavily on $$$$. I know in America it does. I know you're in Canada. Hopefully money isn't worshipped quite as much there. Don't even get me started on the dirtbags who park in handicapped spots.
I guess my level of compassion is more for my own mental health than to be kind to others lol. I have to believe that people just don't understand the effects their choices have on people like us, otherwise I'd be so angry everyday. Gotta learn how to advocate without taking things personally, but even after 24 years in a wheelchair I'm still not great at that.
@@EmpoweredPara You have a wonderful outlook and personality. I know it is often not easy to overlook the ignorance, selfishness and rudeness of ablebodied people. You are a model of mature adulthood. I'm not in a wheelchair but it really pushes my buttons when I see an able bodied person park in a spot reserved for someone who really needs it and for someone to say " I'm only going to be a minute." just doesn't cut it for me. I think the fine should be really large. Large enough to hurt.
Great videos very helpful ideas but you need to stop having so much compassion about other people being inconsiderate
lol I do it for my own sanity
I love how you're sitting on a couch and not in a chair. I still say you need to look up 'phantom pain'. You DO NOT HAVE THIS. AMPUTEES have this. YOU HAVE NERVE PAIN....totally different.
I have pain in my legs thag I can't actually feel. That's phantom pain.
ooooor you could have googled this, the first result that came up for me is a scientific article by the National Library of Medicine stating "Phantom pain can be defined as “[p]ain referring to a missing part of the body or to the paralyzed part of the body after a total spinal lesion” (Nortvedt 2006, p. 13)." so I don't see why she can't call it phantom pain.
@@EmpoweredPara no, that's nerve pain.
@@lachouette_et_le_phoque who are you talking to? I'm both a hip and leg amputee and an incomplete quadriplegic.
@morgancalvi6675 please site your sources of information so that I can look it up. Willing to learn if I'm wrong, but a degree in biology, 24 years in a wheelchair, lots of research and reading, and multiple doctors tell me my sensation and pain in my legs is phantom since I can't actually feel them.
😊😊😊😊😊