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Post by MarineAmp on Aug 23, 2012 23:04:05 GMT -5
My wife and I went to the fair the other day and my wife was eating an ice cream in front of one of the places that makes these custom sticker things that go on people's car windows. We eventually saw some wheelchair guys on it, but they all had legs, but we started talking with the guy and he said he could totally custom a picture and make it anyway we wanted. So we removed the legs changed the head, fixed up the wheelchair a little and this is what we came up with. I was thinking that this would have been nice to have during those times in the past that people would at least realize I was in a chair vs. just being a lazy ass and making my wife pregnant wife pump gas. It doesn't completely alleviate the problem of me wondering what others are thinking, but it helps and it also helps having purple heart plates on my car to coincide with the picture. Just having a purple heart doesn't mean you're disabled necessarily, I know a few guys that have been grazed by shrapnel and didn't really even need a band-aid but received a purple heart. On the other hand I did like just being able to drive down the road and have no one realize I was in a chair, but maybe people will stop tailgating me as much.
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Post by lookingfor on Aug 24, 2012 0:56:02 GMT -5
I hope you got an extra one to add on in a month or so! That is really awesome though, and totally adorable!
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Post by MarineAmp on Aug 24, 2012 10:53:15 GMT -5
I hope you got an extra one to add on in a month or so! That is really awesome though, and totally adorable! We did actually, it's a newborn in a swaddle, and it will probably be placed over mom as if she were holding him.
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Post by spurs2000 on Aug 24, 2012 13:58:05 GMT -5
Wow this is an amazing thread! I have read all comments and all I seem to be able to add is:-
ditto ditto ditto ditto........
And thanks! :-)
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Post by matisse on Aug 24, 2012 15:50:22 GMT -5
Can you guys think of anything else I can say that would really get through regarding this selfish/burden thought process? I can't think of anything else. But then again, I am not sure that I have asked for any reassurance on this issue. I think my issues are more of the type where a "yeah, that sucks that people look at things that way" kind of reaction is what I am looking for.
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Post by athira on Aug 30, 2012 1:32:09 GMT -5
My pov is Im a dev living with a man with cmt and sma and Ive lost partners to sma and dmd before i met him. Tldnr: if you have a shot at love, friendship or passion, life long or a fling; go for it! Longer version: If you have a sever disability or is very ill, you will be a burden. There will be times when both partners are exhausted and angry. The difference is how you handle it, and not let it consume you. Is the burden enough to end a relationship? Yes it can be. For others its just part of life, in the end the burden is insignificant because you share so much and you overcome it together. I know this is very vague and as we say in sweden; flummigt , but it depends on who you are and what kind of relationship you want. Its not selfish to want a relationship even if you know your life can be short. Love is much stronger than grief. Your partner will not understand and will not be prepared when she learns you are not well. I can almost guarantee she has no idea what she is in for and what challanges you will face but that doesnt have to be bad. I wrote once that nobody would knowingly enter a relationship with someone who is dying, its self preservation, that would be mad; but if that crush hits you, there is nothing to do about it . Its not selfish, eventhough a loss is very difficult, the love and everything you share means so much and every day you spend together is important. You dont want your partner to hurt, but again what you share is more important. Its about 12 years since I lost D, and yes it hurts alot when I think about him - for many many years i thought of him every day. but (yes eventhough Im a dev) it really is the good memories you keep a hold on, not the bad. Your life is never the same, but it goes on without you even realize it. Your medical needs must come before your partners needs, there is no arguing that, and its a difficult balance. Its only selfish if you let your health issues become everything. There will be days where you will not have the energy to ask her how her day was, and thats ok -as long as they are not to many. But its important to have time for you as in the two of you together. I have been in a relationship where i was treated badly and stayed because the guy fed my devnes. I do not believe he was a bad person but it was so important for him to control his environment like his meds, how he was lifted, the trach, and when he needed what, that he forgot everything else. Because he had so little control over his body and his faith it was crucial for him to be in control of everything to the extreme. Ive also been in a relationship where my partner was too tired to even speak but he made sure to give me a present every day, and a relationship where my partner refused to talk about his health at all. Perhaps its a strange saying but its important to be real and live in the practical, real world. People often talk about living in the present and take one day at the time and that is true when you are not well, but in reality i think very few people can live that way. There are bills to pay, work to be done, places to be and people to meet. Meds, physical therapy and rest just becomes part of it.
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Post by Dee Dee on Aug 30, 2012 19:02:03 GMT -5
I am one of the women who take her time in the bathroom. It is just how I am and probably always will be. I enjoy spending time having a good long bath etc. just like other people like spending time in front of the computer or television, doing sports, cooking, writing or whatever people like to do (and I am not going to apologise to all the men who have had to wait for me - just as I do not expect them to apologise to me for all the times I have waited while they finished watching a sports game, went out with their buddies to the local pub, spent hours playing on-line games and so on ;D) In fact, I have never understood men´s complaints about women spending time in that bathroom - and then go out to their garages just to spend HOURS washing, polishing, fixing and repairing some old car ... ;D Plus, he would like her to look nice, would he not? People taking a little more time in a relationship than their respective partners - really should not be a problem. It is all about planning and acceptance. So yes, I take a long time getting ready but I am very quick with other things in my life. A partner vice versa, obviously. ******** Also, I am one of the devotees, who really like to help out. This is also just how I am. Furthermore, helping can be a turn-on . I remember we discussed this a while ago and someone said "I am not one of those helper devs". So, I guess we are as devotees also quite different in this aspect. There are probably devotees who are not so keen on helping or devotees who do help, but who are not finding it can be a bit of a turn-on. I agree with Nordic in the regard, that a devotee should not be solely responsible for her disabled partner´s care and welfare - we have talked about this many times, and I have yet to meet a devotee who would like that. There should be someone neutral and professional to provide help. Is it selfish to want a relationship? No, that is never selfish. It is completely natural for any adult or adolescent human being.
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Post by spurs2000 on Aug 31, 2012 16:40:19 GMT -5
Your posts bring up a valid point and I know what you're saying. I am thinking about a reality that I know well, from a caregiver perspective. I have worked as a care giver for a number of people with SCI and fairly progressed MS and there is no doubt that problems that come up are a "burden" to both parties in a couple. Pressure sores, chronic pain and progressively diminished abilities being some of the most devastating examples (among many other possible things) that I've seen. I've seen pressure sores take away both couples freedom (as one person many be restricted to being in bed most or all of the time). And with MS I've seen people continue to require more and more support. These things and chronic pain suck energy from both halves of a couple and have social, psychological and financial repercussions. In the situations, I don't see the AB partner skipping lightly around with a smile on their face as if there totally unphased by these challenges...But I do see them work together as a team, along with other support to make decisions and manage the situation in a way that considers both partners. I see both parties deal with it as it comes, because it's necessary to do so...there isn't an option...for either person. This brings me back to Emmas quote. The AB partner in these relationships is fulfilled by there partner despite these challenges. I see certain personality characteristics in both the AB partner and the partner with a disability that gets them through these times...just as any two people that make it through stuff. Let's remember that AB bodied people carry baggage and encounter circumstances (Illness, family troubles, acquiring disability...)that can pop up throughout the duration of a relationship...So no couple is safe from potential burdens along the way. this is so true and yet at times also so hard to believe in your heart.......
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Post by Deleted on Aug 31, 2012 17:20:59 GMT -5
Marineamp, I would tailgate you because I would totally want to see that sticker and envy the couple in it......:-)....love the sticker by the way....
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Post by Deleted on Aug 31, 2012 17:29:39 GMT -5
Very interesting topic... It is like they always say..."in good and in bad times"....a relationship (any combination) is work, lots of work and there will be times when the" s.... hits the fan" as someone stated above but that does not mean that it should be over right away...the ability to work through it is what counts...to not give up right away on the relationship even if it takes some time, patience and effort....nowadays people throw in the towl way too quick....also not worrying so much about the future and how things will become but go day by day....you have couples that fall head over heels and get married right away and stay together forever, you have couples who plan and wait for years until the right moment to get married and a year later they divorce..there is no guarantee for any relationship I think... Noone should feel guilty for wanting a relationship!
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hephaestus
Full Member
Posts: 134
Gender: Male
Dev Status: Disabled
Relationship Status: In a relationship
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Post by hephaestus on Aug 31, 2012 21:51:05 GMT -5
matisse: I think you hit the nail on the head. It's not a matter of not feeling we're sparing you, it's more of like you said, looking down the line. Also, I think the opinions and feelings from wheelers are coming from their feelings toward non devs mostly. That's not to say devs wouldn't be included, but I think it stems mostly from dealings with non devs. And my own opinion is constantly evolving. I'm assuming, and other wheelers can say to the contrary, but I'm assuming most born wheelers have never been told by society that they're an appealing piece of man meat to a foxy lady. That we fit the traditional mold of desire. Or even given the option of considering legitimate relationships. And this isn't meant to engage in a pity party or anything, it's just I think, for so many, that because we've been told, literally or through action, that relationships are off the table, that to hear otherwise is like hearing suddenly that you're a dolphin or have green skin. For me, if I'm being honest, I was unaware of devs until recently, so it's like, you go from no no no your whole life to suddenly yes, it's a bit of an adjustment and like I said, my opinion is constantly evolving. I couldn't have said it better myself. Being that I too am new to the idea of devs and have a similar background as you (SMA, etc.), I had to shift the gears in my head away from the preconception that being attractive in someone else's eyes was "impossible." It's a hard pill to swallow at first, especially if you've been getting messages to the contrary all your life. I know cerebrally and even mathematically that it's not impossible for someone to find me attractive, but knowing better is different than feeling better, y'know? As for the topic of "being a burden," I totally understand the feeling, but I don't think we should question the AB side on this one; they know what they're getting into. Personally, I've always experienced a light "pressure" to micromanage the extent to which I rely on others, purely out of conscientiousness. For instance, if a friend and I go to dinner and he/she helps feed me, I'll pay for dinner. I don't feel obligated or liable. It's basic reciprocity. I know they would do it no matter what. Nonetheless, it's important to me to signal to my loved ones that I got their backs and will help them no matter what in whatever ways I can. (I'm such a philanthropist. ) This system works well for when you're single and surrounded by a constellation of friends and family who are relatively equal to one another and can easily share burdens. But add to the mix one individual who is romantically attracted to you, and it sort of rocks the boat. I can see why some wheelers would be averse to the idea. Still, you can't protect others from themselves. That's something people try to do all too often. If, hypothetically, I met a lady who proactively wanted me, yeah, I'd be scared sh*tless, but I'd also be 100 percent in favor of it.
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Post by matisse on Sept 1, 2012 17:26:53 GMT -5
As for the topic of "being a burden," I totally understand the feeling, but I don't think we should question the AB side on this one; they know what they're getting into. That's the thing, I would not be sure that they do know, unless they have had wheeler relationships before.
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Post by rebel6842 on Aug 9, 2014 22:25:07 GMT -5
I'm late to the party here, but I'm SHOCKED by the attitude of some of the guys here: Damn it, guys, snap out of it! (best Cher slap from Moonstruck applies here) We are ALL deserving of love, affection, etc. I do worry that I won't satisfy a potential partner in a variety of ways, but it's something we'll have to cross as we get there. Guys, the ladies know what they're getting into by and large (a MAJOR reason I'm dev-friendly/positive), they wouldn't be here otherwise, so don't sweat it.
Having said that, not everyone will get us, but hopefully the RIGHT people will
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Post by A££Y "Cuddles" Magoo on Aug 9, 2014 23:46:42 GMT -5
. Guys, the ladies know what they're getting into by and large (a MAJOR reason I'm dev-friendly/positive), they wouldn't be here otherwise, so don't sweat it. It's a nice thought but I don't think it's unanimously true. Lotsa devs are fearful of taking the plunge because of what they "think" being with PWD might be like, or because of what they "think" they "might" have to give up, and then on the other side u have devs that have taken the plunge too soon and are therefore deterred from ever dating a wheeler ever again. And frankly, 85% of devs I've talked to(at least at first) barely know anything and most often scared to ask questions. I've not trying to sully the hopes of anyone here(and least of all your post) but it's simply not true. With that being said, experience, or lack there of, doesn't necessarily at all matter. All that matters is one's willingness to take this aforementioned plunge. I can still see how some guys could feel this way tho, because truth be told, I think most of us have questioned whether we are good enough for someone or not. So in a way, it seems downright logic as to why a PWD could come to the conclusion and I can tell yeh right now... if I shit my pants and SO had to clean me up. I would be mortified, absolutely mortified. It's nice to know though,even tho I knew it already, it's a really nice thing to read... You gals! It's beautiful, just blamming beautiful.. And yeah... if it's selfish to want a relationship, then I'm pretty much Mr Scrooge and I live in a universe without Christmas.
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Post by Deleted on Oct 6, 2014 11:30:43 GMT -5
Honestly yes. I do think it's selfish of me.
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