Loneliness, Depression, Isolation

[jakeonwheels]

Do you guys ever feel these things? I know everyone in every community has the ability to feel these things but when I talk about it with other people they don't really get it, like the disability specific part of it.

Like, I have friends but I can't do what they do, I can't be part of their all day parties and go dancing and stuff with them. But I'm always invited to boardgames night and DND so I feel like I should feel included and happy that I have friends but sometimes it just makes me even more depressed. Especially when I need help from them. I'm like, hosting things at my house bc mine's the one with the ramps and all of my equipment there and it's just easier for everyone to come to me but then they're helping me and doing my dishes, and it makes me feel loved but it also makes me feel like shit.

It's hard to leave the house bc, I just don't know where to go. Like where is wheelchair accessible. Where the sidewalks are not torn up by roots that I can't get over. I'm a really social person but bc of disability, and inability to work I don't get to have social interactions ALL day. And everyone comes home and they're tired and I get it but I'm sad about it.

My main access to outside has always been through sweethearts but I see now that that's not sustainable bc I just end up being "Whole New Worlded" by them and the isolated again when the relationship ends. SO I'm trying to build community, friends, a support network that will take me places with them, but I can always see people weighing is Jake's access needs and presence worth the work. It feels shitty.

I hate needing help. I hate feeling so unbalanced and sad and angry and depressed right now. And so much of it has directly to do with being disabled.

Maybe it's antithetical to be like: hey guys I feel depressed and sad and angry about the thing we're supposed to celebrating and enjoying here, but I just don't. I want to but I don't.

[tattychairdaddy]

I completely get it. I have bouts of feeling this exact thing every once and a while. Less than it used to be but it still sucks. It doesn't help that I'm pretty soft spoken so even when I'm with friends and I try and jump in on the convo, they cant hear me all the way down here and it just makes me feel more left out.

[zekemartin]

Part of the journey is figuring out our grief. And grief isn’t a one time thing we get over . It’s cyclical and comes back in different ways.

Then there is the uncertainty - is this decision based on me or the disability - and you can never fully know. After I acquired my disability, I was able to get a lot of first dates, but not second ones - which wasn’t the case prior to the disability???

And asking for help is so fraught with feelings. To ask means to be vulnerable. It also goes against what it means to be a man (be self sufficient; be the provider). And part of the journey is figuring out when to ask for help because you can play yourself both ways - ask for help when you are being lazy and take advantage of the disability; and not ask for help when you need it - and deprive folks who care the opportunity to be supportive.

Forgive my stream of consciousness. Just some thoughts that came to mind.

Stay strong!

[mnquad07]

okay I wrote a ton here and then decided not to so I will say... It's completely normal, I feel. You can do anything, for the most part, yourself and have relationships and whatnot. Then, BOOM! It all changes in a second... I'm never going to be okay asking for help, or at least I'm not going to like it. Everything I did before, pretty much can't now. How can we not have those negative days? I feel it's healthy and normal. Can't enjoy the good days without the bad, yin-yang kind of thing? I don't know

[tattychairdaddy]

May 9, 2024 11:41:23 GMT -5 mnquad07 said:

okay I wrote a ton here and then decided not to so I will say... It's completely normal, I feel. You can do anything, for the most part, yourself and have relationships and whatnot. Then, BOOM! It all changes in a second... I'm never going to be okay asking for help, or at least I'm not going to like it. Everything I did before, pretty much can't now. How can we not have those negative days? I feel it's healthy and normal. Can't enjoy the good days without the bad, yin-yang kind of thing? I don't know

You hit the nail right on the head with this one. I've never been one to ask for help unless it was absolutely needed and I still to this day I feel like a burden when I do. We are going to have negative days. Some weeks more than others. What really helped me was just taking things one day at a time. If I have a bad day, tomorrow is a new day to try over again. This life really makes us appreciate the little victories and small positive things that happen. Life threw us a curveball, it's up to us to keep trying to knock that ball out of the park. 

[jakeonwheels]

May 9, 2024 1:51:25 GMT -5 tattychairdaddy said:

I completely get it. I have bouts of feeling this exact thing every once in a while. Less than it used to be but it still sucks. It doesn't help that I'm pretty soft spoken so even when I'm with friends and I try and jump in on the convo, they cant hear me all the way down here and it just makes me feel more left out.

Oh my god, so much this. I feel like I’m screaming all the time.

[jakeonwheels]

May 9, 2024 11:41:23 GMT -5 mnquad07 said:

okay I wrote a ton here and then decided not to so I will say... It's completely normal, I feel. You can do anything, for the most part, yourself and have relationships and whatnot. Then, BOOM! It all changes in a second... I'm never going to be okay asking for help, or at least I'm not going to like it. Everything I did before, pretty much can't now. How can we not have those negative days? I feel it's healthy and normal. Can't enjoy the good days without the bad, yin-yang kind of thing? I don't know

Oh man now I want to know what you wrote.

[jakeonwheels]

I deleted a post bc I replied and then realized I wasn’t able to fully ask what I meant bc I was so tired.

So I will say thanks for responding and I want to get back to you guys when I have more spoons.

[dutchdev]

I can’t speak to your experience but I can say how you come across to me. It isn’t welling in self pity, you sound tired and annoyed for just reasons while seeming to combat the very issues as best as you can.

I don’t think most devs consider this place celebrating disability or in any way denying the very real issues you face. I think we just celebrate body positivity, variety and the fact that being attracted to that variety is okay.

My only hope is you can get out of the rut or talk to a psychologist about it, because unfortunately we can not change the world around us (as easily) but we can control our response to it.

[jakeonwheels]

May 9, 2024 1:51:25 GMT -5 tattychairdaddy said:

I completely get it. I have bouts of feeling this exact thing every once in a while. Less than it used to be but it still sucks. It doesn't help that I'm pretty soft spoken so even when I'm with friends and I try and jump in on the convo, they cant hear me all the way down here and it just makes me feel more left out.

I'm not sure if people are ignoring me or if they can't hear me and I've been experimenting with saying something and then saying it louder and louder until someone acknowdges me.

hey Kevin, how was your day.

Hey Kevin How Was Your Day

KEVIN, How Was Your Day 

KEVIN FOR THE LOVE OF GOD WHAT HAVE YOU BEEN UP TO


Mixed results.

[jakeonwheels]

May 9, 2024 7:23:05 GMT -5 zekemartin said:

Part of the journey is figuring out our grief. And grief isn’t a one time thing we get over . It’s cyclical and comes back in different ways.

Then there is the uncertainty - is this decision based on me or the disability - and you can never fully know. After I acquired my disability, I was able to get a lot of first dates, but not second ones - which wasn’t the case prior to the disability???

And asking for help is so fraught with feelings. To ask means to be vulnerable. It also goes against what it means to be a man (be self sufficient; be the provider). And part of the journey is figuring out when to ask for help because you can play yourself both ways - ask for help when you are being lazy and take advantage of the disability; and not ask for help when you need it - and deprive folks who care the opportunity to be supportive.

Forgive my stream of consciousness. Just some thoughts that came to mind.

Stay strong!

My favorite thing is when I find something that can take the burden off everyone and make things easy. We would always forget my cushion when we went out so I just bought cushions for the car and problem solved. No more back and forth, which was inevitably someone else bc wheelchair and I are loaded at this point. So it's nice to just head problems off at the pass if I can.

[jakeonwheels]

May 9, 2024 11:41:23 GMT -5 mnquad07 said:

okay I wrote a ton here and then decided not to so I will say... It's completely normal, I feel. You can do anything, for the most part, yourself and have relationships and whatnot. Then, BOOM! It all changes in a second... I'm never going to be okay asking for help, or at least I'm not going to like it. Everything I did before, pretty much can't now. How can we not have those negative days? I feel it's healthy and normal. Can't enjoy the good days without the bad, yin-yang kind of thing? I don't know

Yeah, it's really hard. In my wheelchair I feel invisible all the time and simultaneously like spotlight is being shone on me, kids stare and parents tell the to look away...

but yeah, I try to really savor the good days.

[mnquad07]

May 10, 2024 22:00:26 GMT -5 jakeonwheels said:

May 9, 2024 11:41:23 GMT -5 mnquad07 said:

okay I wrote a ton here and then decided not to so I will say... It's completely normal, I feel. You can do anything, for the most part, yourself and have relationships and whatnot. Then, BOOM! It all changes in a second... I'm never going to be okay asking for help, or at least I'm not going to like it. Everything I did before, pretty much can't now. How can we not have those negative days? I feel it's healthy and normal. Can't enjoy the good days without the bad, yin-yang kind of thing? I don't know

Yeah, it's really hard. In my wheelchair I feel invisible all the time and simultaneously like spotlight is being shone on me, kids stare and parents tell the to look away...

but yeah, I try to really savor the good days.

or you can notice when people are intentionally trying not to look at you... Sometimes it's more obvious than just staring.

[zekemartin]

May 10, 2024 21:50:37 GMT -5 jakeonwheels said:

May 9, 2024 1:51:25 GMT -5 tattychairdaddy said:

I completely get it. I have bouts of feeling this exact thing every once in a while. Less than it used to be but it still sucks. It doesn't help that I'm pretty soft spoken so even when I'm with friends and I try and jump in on the convo, they cant hear me all the way down here and it just makes me feel more left out.

I'm not sure if people are ignoring me or if they can't hear me and I've been experimenting with saying something and then saying it louder and louder until someone acknowdges me.

hey Kevin, how was your day.

Hey Kevin How Was Your Day

KEVIN, How Was Your Day 

KEVIN FOR THE LOVE OF GOD WHAT HAVE YOU BEEN UP TO


Mixed results.

I have some thoughts and if you are already aware of these things, forgive me.

Some of this can be related to the disability - at T6 - I have reduced lung capacity, so I can’t really yell. If I’m leading a large group. I have to get someone to yell to get everyone’s attention.

Also, being seated puts the sound waves lower than people ears, if they are standing. Likewise, I have a hard time hearing people when they are standing. Always helpful if some one me sits to talk with me.

Have you tried getting someone’s attention before you begin to talk to them. A tap on the shoulder or elbow to get them to look at you before you speak might help???

[jakeonwheels]

interesting, I am going to try that out. Thank you!