You should tell your family. They will either chicken out and distance themselves, or they will become much closer.
You also need to tell people how you feel they are treating you. I do that with strangers all the time when I'm out. If I am with family people rarely talk to me or even acknowledge that I exist. Even when I'm paying the bill. It drives me nuts when I think about it, so I try to visualize them wearing a ridiculously silly outfit and that they have mushrooms growing out of their skull.
I'm pretty sure if I told my Mom for instance that I can't look in the mirror because I hate seeing my vent, body and wheelchair it would make her cry. Hence the reason I hold back on expressing things to the extent of how I really feel. IT would just upset everyone terribly.
@plinksugar - it is easy for people to say you will get used to the stares. Not for me because my powered wheelchair seems to scream "...handicaped person!...". I was 15 years old when my SCI (level C4/C5) happened. Decades later, I still get the anxity in my tummy.
I'm pretty sure if I told my Mom for instance that I can't look in the mirror because I hate seeing my vent, body and wheelchair it would make her cry. Hence the reason I hold back on expressing things to the extent of how I really feel. IT would just upset everyone terribly.
@plinksugar - it is easy for people to say you will get used to the stares. Not for me because my powered wheelchair seems to scream "...handicaped person!...". I was 15 years old when my SCI (level C4/C5) happened. Decades later, I still get the anxity in my tummy.
Stares are a horrible experiences especially when they're accompanied by whispers which makes them all that more hurtful which something I seem to encounter every single time I venture out. I'm also prepared for people to come up to me and ask me what's wrong (which happens again every time I got out).
Despite this I'm not going to go back in the house and remain isolated. I did that for nearly a year after I became disabled and it was terribly boring, I used to just sleep, eat and watch t.v and that was absolutely it. So even though people give me crap and I hate looking the way I do I still enjoy being out amongst society than being stuck in a house.
Post by kilg0retr0ut on Jun 18, 2014 17:34:48 GMT -8
When you start your appointments in July, with someone who understands and has worked through this with others, you may find paths to take that are hard to see now. Did that sound like Yoda. It's hard to hold it in, I think you'll feel better once you talk it out with someone. Until then post away, we'll all do our best to help. Mark
You should tell your family. They will either chicken out and distance themselves, or they will become much closer.
You also need to tell people how you feel they are treating you. I do that with strangers all the time when I'm out. If I am with family people rarely talk to me or even acknowledge that I exist. Even when I'm paying the bill. It drives me nuts when I think about it, so I try to visualize them wearing a ridiculously silly outfit and that they have mushrooms growing out of their skull.
I'm pretty sure if I told my Mom for instance that I can't look in the mirror because I hate seeing my vent, body and wheelchair it would make her cry. Hence the reason I hold back on expressing things to the extent of how I really feel. IT would just upset everyone terribly.
Maybe you should tell your mom. She might understand. I recently told my sister that I dread waking up each morning. She understood and I appreciate that.
I'm pretty sure if I told my Mom for instance that I can't look in the mirror because I hate seeing my vent, body and wheelchair it would make her cry. Hence the reason I hold back on expressing things to the extent of how I really feel. IT would just upset everyone terribly.
Maybe you should tell your mom. She might understand. I recently told my sister that I dread waking up each morning. She understood and I appreciate that.
Honestly it would be too uncomfortable for me to say that at least right now.
That you are opening up here is a great step, and that you are seeking counseling and will be able to share freely with someone who is trained to help you rebuild your thought-world, is another great step. You know best, but sharing the truth with your mother at some point will probably be received with relief--mothers read our hearts, but she is dealing with her own frustration of wanting to help you but perhaps not knowing how to. Our families share our losses if they love us.
In your photo the vent is not the first thing one sees, but maybe it would be more obvious in person. Since the vent seems to be the primary focus of your image discontent, can you use a scarf to make it less distracting? Scarfs are so in style right now, it seems (I am definitely not a fashionable type), and there are very lightweight ones that would even be wearable in warmer weather. Might be a way of taking control of your image.
Coping with questions strangers ask is a challenge. When they ask me things I'd rather not answer, I let them know in various ways, depending upon my mood! If they are just asking because they have been staring and feel as if they have to say something because I am staring back, then I say something like, "Why don't you share about your life first?" If they are downright rude, I might quip, "Forgot your suppository again?" If they are genuinely curious and I have the energy to deal with that, such as a child asking or someone I have not seen since before paralysis, I might give a somewhat planned response that educates but is not overwhelming. Finding ways to respond that don't keep making the questions seem "new" helps me to deal better with them. And, inspired by truwrecks and Lαrα, I sometimes just make up really sick stuff to enjoy the reaction of total strangers!
Long ago, way pre-SCI, I decided to eliminate most of the mirrors in my house, just using them when I needed to make sure I wasn't about to commit some fashion atrocity. A break from seeing ourselves is not always a bad thing. But seeing ourselves realistically after such a drastic change as SCI is another matter. I think we all have needed some help with that, and you are after what you need--good move!
''Long ago, way pre-SCI, I decided to eliminate most of the mirrors in my house, just using them when I needed to make sure I wasn't about to commit some fashion atrocity''
I'm pretty sure if I told my Mom for instance that I can't look in the mirror because I hate seeing my vent, body and wheelchair it would make her cry. Hence the reason I hold back on expressing things to the extent of how I really feel. IT would just upset everyone terribly.
Don't worry piinksugar, I know exactly what you mean. I'd expect the same response from my family but it's only because they love you. I personally wouldn't want to upset my parents so I wouldn't tell them such things. I like to deal with issues on my own and it seems like that's what you're trying to do.
Stares are a horrible experiences especially when they're accompanied by whispers which makes them all that more hurtful which something I seem to encounter every single time I venture out. I'm also prepared for people to come up to me and ask me what's wrong (which happens again every time I got out).
Despite this I'm not going to go back in the house and remain isolated. I did that for nearly a year after I became disabled and it was terribly boring, I used to just sleep, eat and watch t.v and that was absolutely it. So even though people give me crap and I hate looking the way I do I still enjoy being out amongst society than being stuck in a house.
Good idea piinksugar! It's best to stay active and be out & about. It's good for your mind.
You should tell your family. They will either chicken out and distance themselves, or they will become much closer.
You also need to tell people how you feel they are treating you. I do that with strangers all the time when I'm out. If I am with family people rarely talk to me or even acknowledge that I exist. Even when I'm paying the bill. It drives me nuts when I think about it, so I try to visualize them wearing a ridiculously silly outfit and that they have mushrooms growing out of their skull.
I'm pretty sure if I told my Mom for instance that I can't look in the mirror because I hate seeing my vent, body and wheelchair it would make her cry. Hence the reason I hold back on expressing things to the extent of how I really feel. IT would just upset everyone terribly.
Then tell them as politely and as direct as you can. Let them be upset for a while. The people that truly care about you will overcome and adapt, which will be better for everyone.
The only thing worse than telling a lie, is living a lie. You my friend and living that lie until you come clean and tell them how you feel and why.
That you are opening up here is a great step, and that you are seeking counseling and will be able to share freely with someone who is trained to help you rebuild your thought-world, is another great step. You know best, but sharing the truth with your mother at some point will probably be received with relief--mothers read our hearts, but she is dealing with her own frustration of wanting to help you but perhaps not knowing how to. Our families share our losses if they love us.
In your photo the vent is not the first thing one sees, but maybe it would be more obvious in person. Since the vent seems to be the primary focus of your image discontent, can you use a scarf to make it less distracting? Scarfs are so in style right now, it seems (I am definitely not a fashionable type), and there are very lightweight ones that would even be wearable in warmer weather. Might be a way of taking control of your image.
Coping with questions strangers ask is a challenge. When they ask me things I'd rather not answer, I let them know in various ways, depending upon my mood! If they are just asking because they have been staring and feel as if they have to say something because I am staring back, then I say something like, "Why don't you share about your life first?" If they are downright rude, I might quip, "Forgot your suppository again?" If they are genuinely curious and I have the energy to deal with that, such as a child asking or someone I have not seen since before paralysis, I might give a somewhat planned response that educates but is not overwhelming. Finding ways to respond that don't keep making the questions seem "new" helps me to deal better with them. And, inspired by truwrecks and Lαrα, I sometimes just make up really sick stuff to enjoy the reaction of total strangers!
Long ago, way pre-SCI, I decided to eliminate most of the mirrors in my house, just using them when I needed to make sure I wasn't about to commit some fashion atrocity. A break from seeing ourselves is not always a bad thing. But seeing ourselves realistically after such a drastic change as SCI is another matter. I think we all have needed some help with that, and you are after what you need--good move!
This response should be the gold standard for new people coming here! It speaks volumes in wisdom and experience!
That you are opening up here is a great step, and that you are seeking counseling and will be able to share freely with someone who is trained to help you rebuild your thought-world, is another great step. You know best, but sharing the truth with your mother at some point will probably be received with relief--mothers read our hearts, but she is dealing with her own frustration of wanting to help you but perhaps not knowing how to. Our families share our losses if they love us.
In your photo the vent is not the first thing one sees, but maybe it would be more obvious in person. Since the vent seems to be the primary focus of your image discontent, can you use a scarf to make it less distracting? Scarfs are so in style right now, it seems (I am definitely not a fashionable type), and there are very lightweight ones that would even be wearable in warmer weather. Might be a way of taking control of your image.
Coping with questions strangers ask is a challenge. When they ask me things I'd rather not answer, I let them know in various ways, depending upon my mood! If they are just asking because they have been staring and feel as if they have to say something because I am staring back, then I say something like, "Why don't you share about your life first?" If they are downright rude, I might quip, "Forgot your suppository again?" If they are genuinely curious and I have the energy to deal with that, such as a child asking or someone I have not seen since before paralysis, I might give a somewhat planned response that educates but is not overwhelming. Finding ways to respond that don't keep making the questions seem "new" helps me to deal better with them. And, inspired by truwrecks and Lαrα, I sometimes just make up really sick stuff to enjoy the reaction of total strangers!
Long ago, way pre-SCI, I decided to eliminate most of the mirrors in my house, just using them when I needed to make sure I wasn't about to commit some fashion atrocity. A break from seeing ourselves is not always a bad thing. But seeing ourselves realistically after such a drastic change as SCI is another matter. I think we all have needed some help with that, and you are after what you need--good move!
This response should be the gold standard for new people coming here! It speaks volumes in wisdom and experience!
I definitely agree! Also the scarf is a great idea. Some of my clients with leg bags started using handkerchiefs and other fabrics to cover it up, basically using it as an accessory to their outfit. This is Hal, who was the first I heard of doing this.
''Long ago, way pre-SCI, I decided to eliminate most of the mirrors in my house, just using them when I needed to make sure I wasn't about to commit some fashion atrocity''
Hahahha, I mainly used mirror before job interviews and dates!