My family SUCKS!!!

[TINAMARIE]

I think I'm just wanting to vent here. For the last week I have been thinking about all the wonderful family members and friends of people with SCI's on here and I've been mentally comparing them to my family and friends. I have come to a conclusion...my family and friends SUCK!!! It has been 10 months since I was injured and I believe that my 4 yr olds now now more about a SCI than my adult family and friends. None of them have bothered to learn anything about SCI other than what they picked up while I was in the hospital. Maybe it's because I am recovering quite well, maybe because they don't live with me, maybe because I have pushed SO DARN HARD to be as independant as possible? I don't know why, but it really does hurt my feelings. Even one of my best friends whom is my home helper and is with me 5 hours a day, 5 days a week doesn't seem to have any interest in learning anything about this horrible thing that happened to me!!! If I were to mention "C5" to them they would look at me like I was stupid!! They have NO CLUE and no desire to learn! You would think that they would be interested in a cure for SCI now, since their daughter, sister, niece, cousin, friend is paralyzed. I seriously doubt that has ever crossed their mind. I'm guessing that since I can now live on my own and take care of my children by myself, it's good enough for them-"who cares if she recovers fully...at least we're not having to take care of her and her kids."

I don't want my family to take care of me, I just wish that they would show an interest in what happened to me. Learn all they can, research cures, offer advice (even if I already know it-at least that would show they care!) The only question my parents ever ask me is "So are you walking yet?" like thats the only thing involved in a SCI!!! AAAARRRRRRRRGGGGGGGGGHHHHHHHHHHHHHHH!!!

But on the other end of it, I want to say thank you to all of you on here. I don't know any of you, but you all give me more support and advice than I can get from my family and friends. I am soooo glad I found this site. I don't know what I would do without it! God bless every one of you and know that my thoughts and prayers go out to everyone with SCI and everyone who knows someone with SCI. Thanks ya'll!!

[Bspill1]

I know exactly what you mean. No one has ever checked into this web site or any others. They just asked how I am doing and how I do it. As much as they seem to care or or wants to that is all I get. All well, I guess it is just too overwhelming.

Brian C/5
http://www.brianupdates.homestead.com/

[jplw]

My family also sucks. Sat at my daughters b-day party I thought that I would show them how far I had come since the last time I saw them(jan, they don't believe in visiting). I walked about 50 ft with my walker. Thats good, you'll be walking fine in no time. I do not know exactly what I expected, maybee excitment and understanding of how hard it was to get here and how much here still sucks. I have had alot of the same issues that you wrote of. When I was at the hosp visitors all the time, and it helped alot. however, since I got home it seems that the novilty has worn off of my injury. There are a select few people that still come by and seem to really care. Others are just to busy with thier own lives. when i do see them the last thing they say is call me if you need anything. Ha, right. Sorry I cant right now. maybee next week. No I need groceries sooner, unless you are willing to pack my kids lunch and bring us dinner. The dumfounded look when you mention levels or programs or pain level or exercises. If they went to therapy with me once in a while or just spent more time with me they would know what i was talking about.
I fell like i'm going on and on and somtimes I dont feel that I express my ideas well
I will finish up by saying thank you all for giving me something to read each day that gives me someon to relate to and makes me feel less alone in this world.

[marmalady]

I'm sorry, you guys. Not offering any excuses, but some folks just can't deal with it all. We saw this so often when my son was in rehab; even one case where a 16 year old boy with a C4-5 injury was being put in a nursing home because mom and dad just couldn't deal.

Please know that you all have family here - and (((HUGS)))) to all.

_____________
If we have no peace, it is because we have forgotten that we belong to each other. - Mother Teresa

You guys, some of my family sux too, but in a different way....but, I still feel your pain! http://sci.rutgers.edu/forum/images/smilies/frown.gif

Sad, but true, I've found that unless someone lives in some aspect with the challenges you guys face, they are just never going to understand. I've talked until I'm blue in the face with some of my family members and they still don't GET it. They resent me for the time I spend on my husband who has an SCI, they accuse me of not WANTING to help our elderly parents, one of my sisters even had the nerve once to tell me my husband is SPOILED! http://sci.rutgers.edu/forum/images/smilies/mad.gif

If your'e like me, you probably always thought you could depend on your family to understand, and if they didn't understand, that they would at least try.

jplw give yourself the biggest gold star, pat on the back and do something special for yourself! http://sci.rutgers.edu/forum/images/smilies/smile.gif I certainly understand the hard work and all the effort it has taken you to get to where you are today with your walking (and everything else)! I for one am IMPRESSED!!! http://sci.rutgers.edu/forum/images/smilies/smile.gif

And TinaMarie, you have worked hard until you can take care of your kids all by yourself! Girl, I couldn't do that and I don't have an SCI to deal with! I don't see how moms do it PERIOD, so you have my deepest respect too! http://sci.rutgers.edu/forum/images/smilies/smile.gif

Hang in there! http://sci.rutgers.edu/forum/images/smilies/smile.gif

Carol

[Kendell]

Debbie's family also engaged in some behaviors that infuriated me and that I've never totally understood. Sometimes seeming to be loving and giving, sometimes -shall we say - less than kind. In the 30 plus years she was in a wheelchair, they never made their house accessible for her at all. Best I've figured is that it was about control issues in this case - issues that were present before she was injured, and issues that didn't disappear after she was injured. I wonder if that isn't true in many families.

As for friends, I do agree that some people just can't deal with it. Debbie has had so-called friends disappear for that reason. Some copped to it, others just vanished into the ether.

It is the people who show us they love us who become our true family of the soul - however, it does not erase the pain of rejection of any kind from the family we thought would be there for us as we know we would have been for them.

I wish I knew why it is this way so often.

[duge]

Some of mine....... I get so tired of hearing them say"Oh you will get it all back" they have no Idea of what a SCI is or what is involved. And you can't tell them any different! then they ask, "you must not be trying, you should bee able to do that by now"
Sometimes I'd rather not go around or have them come around me!
Duge

T-12 incomplete 10-3-02

[Bspill1]

That is the worst!

"you will walk again","it will come back","they will find a cure".

They don't even have a clue.

Brian C/5
http://www.brianupdates.homestead.com/

[steveg]

Nice attitude and very understanding...

[~Patrick~]

I can understand. My Mom lives three blocks away and is a rehab nurse. I saw her twice in the last six months, once at Walmart and sunday at my Grand-dads eightieth birthday. My wife has no idea. I got a book for her to read and she put it off until I put it away and she has never asked about it. She has no idea what meds I am on or anything about my injury.

T-10 complete
10/08/01

[klj]

I learnt who my 'real' friends were quickly. When in hospital I had many visitors but then I was off to rehab/home, they soon realised that recovery isn't instant! so no more visits http://sci.rutgers.edu/forum/images/smilies/frown.gif - some think they're experts (telling you about your pain and function) & think they know everything about sci, but are no where near to having an understanding of daily life of a quad. I have one true friend who visits weekly and volunteers to take me shopping http://sci.rutgers.edu/forum/images/smilies/smile.gif.
My family are really good, offering to help, taking me to dr's appts http://sci.rutgers.edu/forum/images/smilies/smile.gif although some live in their own world, complaining about not being as young and getting out & about like they use too, but hey they can toilet, eat and walk normally! http://sci.rutgers.edu/forum/images/smilies/confused.gif

[woman from Europe]

My parents pretend it never happened. And have done that for 36 years. They never offered any help or comfort. Now they are old and expect me to help them. And gets angry when I tell them I can't.

I was 16 years old and I was in the rehab for 6 month. They visited me twice. When I came home, they did not fix anything for me. The result is that I did not get any help from the insurence at all. They did not send me to the doctor after, no controlls at all. If I asked for help, my mother told me it was bullshit and I could do it alone.

Do I have to say we do not have a good relationship?

TH 12 incomplete 12-12-69.

[Lizbv]

Sorry, my family is not much help either. It sucks. I just let my father mainly talk about what "they're" doing when I chat on the phone anymore with them. He has no idea how to have a conversation of value with me. My mother died when I was 19. My Aunt is supportive and visits, but I really hate going "home" to visit anymore. Your not alone Tinamarie. Growing up, I had a wonderful childhood, etc. With the passing of my mother, things changed forever. My sci happened 3yrs later. Keep the faith.

"I guess pain is a great motivator."- Yanni
Eine Welf, Ein Volk

[darthe]

Every day I start to think of all the friends who dissappeared. My sister who calls me once every month or so to talk excitedly about how great everything in her life is and then goodby, never once in two and a half years 'how are you doing''. My daughter who encouraged us to move to her town so we could be close. I guess I thought that meant so she could help me care for my son who is c4-5. Was I wrong. Now I'm the free babysitter along with caregiver.

See how easy the hurts starts to roll out. I stop myself from this thought pattern as quickly as possible because I want to create peace in my own heart. I let the tears flow but I move over to loving thoughts because bitterness is waiting just around the corner to take hold of me and I don't want to choose to allow it. Years ago I stood in the bookstore reading a book that I have always wished that I bought because the phylosophy it taught is a cornerstone to my thoughtlife. It said something like - If you've given all you have and no one gives anything in return, give somemore. I don't know why but that one thought helps me endure.

Also I do this work because I choose to be a decent human being and mother. Not because of reward or acknowledgement. I remind myself of that everyday I am alone with no one who responds including the one I care for who speaks to me in as few words as he can. I have to have deeper resources than the response of others. Sometimes I think that most people are so unconsious, but who can blame them, it is very painful to be awake.

Darthe

Music, to create harmony, must investigate discord. Plutarch

[TINAMARIE]

Well, unfortunately it looks like I'm not alone. Huuuuugsss and warm wishes to all of you!! I'm sorry that we all have to go through this. We're having to deal with enough just with the SCI. We shouldn't have to deal with family issues like this!! Thank you to everyone who shared and made me see my family isn't the only one screwed up and that, in fact, I am still a little better off than some! Hopefully, someday, something will change, but I'm not going to hold my breath.

C5-C7 Walking Quad

Originally posted by dhues:

Every day I start to think of all the friends who dissappeared. My sister who calls me once every month or so to talk excitedly about how great everything in her life is and then goodby, never once in two and a half years 'how are you doing''. My daughter who encouraged us to move to her town so we could be close. I guess I thought that meant so she could help me care for my son who is c4-5. Was I wrong. Now I'm the free babysitter along with caregiver.

See how easy the hurts starts to roll out. I stop myself from this thought pattern as quickly as possible because I want to create peace in my own heart. I let the tears flow but I move over to loving thoughts because bitterness is waiting just around the corner to take hold of me and I don't want to choose to allow it. Years ago I stood in the bookstore reading a book that I have always wished that I bought because the phylosophy it taught is a cornerstone to my thoughtlife. It said something like - If you've given all you have and no one gives anything in return, give somemore. I don't know why but that one thought helps me endure.

Also I do this work because I choose to be a decent human being and mother. Not because of reward or acknowledgement. I remind myself of that everyday I am alone with no one who responds including the one I care for who speaks to me in as few words as he can. I have to have deeper resources than the response of others. Sometimes I think that most people are so unconsious, but who can blame them, it is very painful to be awake.

Darthe

Music, to create harmony, must investigate discord. Plutarch

Darthe,

While your post is heartwrenching, I think this is one of the most beautiful, eloquent, moving things I have ever read. Your gentle soul is an inspiration to me. I know your intent is not to inspire, you are just being who you are, which makes you that much more of an inspiration. http://sci.rutgers.edu/forum/images/smilies/smile.gif Take care and thank you for being you, Carol

[Lizbv]

I wanted to add. Please keep in my mind I still respect my father and value him greatly and my family. I speak to him often, but I'm not sure things will ever change. SCI has heightened my perceptions, views, values, etc and unfortunately, some people will never change when it comes to people with disabilities. Sometimes I think challenges bring out (in the end), the best in all of us. May your family grow in understanding with your presence, Tinamarie.

"I guess pain is a great motivator."- Yanni
Eine Welf, Ein Volk

[Kendell]

Darthe, I totally agree with Carol. That was an incredible post. You put into words much of what I think and made it clear to me. Thank you.

[TINAMARIE]

After posting this thread I cried to my counsellor about my friends and family. He made me see things a little differently, as always. I have realized that my friends and family do care-just in their own way. It did still bother me that they knew so little about what was going on with me, so I sent them all an email on stats of spinal cord injuries. Only 2 friends answered back asking questions about my injury, but 2 is better than none I guess. One of those 2 still calls me a para,even though I did explain that I'm technically a quad, but oh well, at least she asked questions.

Only one of my friends visited me the whole time I was in the hospital. I didn't start spending any real time with my friends again until just a few months ago. I have finally started sitting my friends down and explaining to them exactly how bad I was at the beginning. None of them realized I was completely paralyzed from the shoulders down. Once I made them realize it, they began asking more questions and basically I gave them a crash course on spinal cord injuries.

Last night I sent an email to everyone in my address book asking them to call the White House on Tuesday about stem cell research. I really did not expect anyone to pay attention to my email. Now, most of the people in my address book are people I have met in chat rooms on AOL. I have been a "regular" in a couple chat rooms going on 5 years now. I have never met any of these people in person nor talked to them on the phone. The extent of our relationship is chatting in the chatroom. When I checked my email this morning, I already had 10 replies from these chatroom friends telling me that they would make the call on my behalf. (I sent the email to over 50 people, but am shocked to have even 10 replies!!) A couple told me that they had sent my message to all of THEIR friends asking them to call for me too.

I guess the mistake was mine in just assuming no one cared. If I had reached out to everyone to begin with, instead of just waiting for them to ask, I would have realized that they do care. I guess we all show that we care in different ways. My way is to research as much as possibe and help as much as I can. Not everyone is like me. My friends have shown me now that they DO care. Even these people I call friends that I wouldn't know if they passed me on the street.

I guess from now on, when I need help or support, I will be the one to reach out. I'm not going to sit back and wait for someone to offer it. They won't know I need it unless I ask for it!

C5-C7 Walking Quad