6 replies to this topic

[thing1]

Hi, my twin sister suffered a complete T8 SCI 4 years ago in a car accident. Our family was on our way back from our 14th birthday dinner when a drunk driver ran a red light and she caught the brunt of it all. That was 4 years ago. We will be turning 18 in a couple of weeks and obviously every birthday is bittersweet nowadays. But the real problem is I'm realizing we are getting closer and closer to college. Now my sister is very independent but I don't think she's quite ready to live on her own (even with a home care nurse), especially to make that transistion while also transitioning to college life. We have discussed going to the same school and living together and we both like that idea but I'm also curious to try being on my own, being completely independent. But then I am reminded that complete independence is something my sister will never have. I've been by her side forver, we're twins for goodness sake, and I'm not sure if I'm ready to separate yet or not but I'm definitely curious.

There is also another factor, she has a boyfriend, they've been together for 2 years. He is amazing and really just an incredible person. They are looking at trying to go to school together so I suppose they could always live together (that is something that the parents on both sides have discussed and would be okay with). They are not sexual as of yet, there's complications with that which I'm sure they will deal with when they are both ready. The problem I forsee is let's say they decide to go to school together and live together so I decide to go to school somewhere else and try the whole loner thing...what happens if they break up? Do I then feel obligated to move schools to help her?

I love my sister and I've never really felt obligated to help her with anything, I've always wanted to. But college is the next stage in our lives and being sisters, and more so twins, makes this whole thing that much more difficult...

Advice???

[wheeliebear75]

Although it was a long time ago....like before you ladies were even a twinkle (in stereo of course) in your mother's eye, I was also hurt @ age 14 about 3&1/2 months before I turned 15. MY lack of independence stems from the TBI (traumatic brain injury) & not the SCI.

If your sister is having trouble with being independent....what may I ask is it that she is struggling with? There are a few members at around that same level & even higher who have maintained their independence enough to live on their own & quite a few others who only need assistance here & there.

Although your sister's SCI does complicate things...the GOOD news is that this dilemma of what school to go to & with whom is 100% age appropriate....you & all the other 17-19 year olds disabled or not singleton OR twin!

Edited by wheeliebear75, 21 December 2011 - 08:48 AM.

[nomis]

Not being a twin, I have no real understanding of that so I'll trust you to weave that consideration into anything I write here.

I hear your concern and doubts that your sister could live independently, away from the family and away from you. You seem to be saying she needs your continued involvement. I think it is useful to turn that around and question if it is you who has the problem of being seperated from her.

At 18, you are both young to go it alone into this world but plenty do - even though there are real risks and initially it can be hard. But at T8 I would have full confidence that your sister could be totally independent is she chooses to go that route.

I have no answers for you. Life isn't that easy. These hard decisions are the spice of greater maturity and it would be wrong for anyone to deny you the freedom to make your own decisions and take responsibility for their outcomes. Even a mistake can be a valuable gain in knowledge and strength.

It's not that big a deal that your sister is going to spend the rest of her life in a wheelchair. That is only a small part of who she is and will further deminish in time. So, next birthday expect to drop the bitter sweet and celebrate each other.

This is an especially exciting time of your lives. You lucky women.

[thing1]

wheeliebear75, on 21 December 2011 - 08:46 AM, said:

Although it was a long time ago....like before you ladies were even a twinkle (in stereo of course) in your mother's eye, I was also hurt @ age 14 about 3&1/2 months before I turned 15. MY lack of independence stems from the TBI (traumatic brain injury) & not the SCI.

If your sister is having trouble with being independent....what may I ask is it that she is struggling with? There are a few members at around that same level & even higher who have maintained their independence enough to live on their own & quite a few others who only need assistance here & there.

Although your sister's SCI does complicate things...the GOOD news is that this dilemma of what school to go to & with whom is 100% age appropriate....you & all the other 17-19 year olds disabled or not singleton OR twin!

Thank you for the encouragement and she doesn't have specific things that would inhibit or independence daily, she can get herself showered, out of bed, dressed, and even deal with the bathroom on her own MOST DAYS, there are days where her pain is a little too much and it makes some of these tasks too difficult or too painful I should say for her to accomplish or accomplish in practical amount of time. That is unfortunately, one thing that inhibits her a lot, she has chronic pain just above her injury site, right around the injury as well as early onset fibromyalgia. But all in all she could be independent except she could never live where it snows (it's really just impractical) and I suppose the biggest concern is her falling, which of course does not happen a lot but it happens. She does wear a life alert bracelet but there have been 2 incidents when she has fallen in the past 4 years when she has then experienced a seizure. Unfortunately the doctors don't have a cause identified except the jolting of the brain that could occur when she falls...but basically they have nothing. And it's not really epilepsy in the typical sense because she's only had those 2...life alert doesn't do her any good if she's seizing...I know we can't prepare for any and all emergencies but idk I guess I'm just a worried sister.

The other concern is that although she can be independent as I stated above, neither of us are sure (because we have talked about it) if college is the right time for her to become completely independent. It would obviously be a bigger transition for her than for me, or an AB student simply because we do help her around the house (not overly so but if we are available to help and she asks we're there) she won't have that if she's living on her own. I usually help her shower and/or do bathroom duty. She is capable of doing it on her own, and she does do it on her own but usually I'm around so usually I help her out so she can get on with whatever she actually WANTS to be doing. I'm not one of those hovering carers either, I'm technically not even her full time caregiver (it's more of a family job) and really, she doesn't even need a caregiver, like I said, but we teens like to move fast, and that applies to her as well and sometimes we are just there to make things go faster you know? So anyway, my main concern is that college may not be the time to make 2 major transitions. First, living a bajillion miles away from mom and dad along with getting new doctors and going to a new school and transitioning to college life etc and then also having to transition to being completely independent...

[thing1]

nomis, on 21 December 2011 - 10:27 AM, said:

Not being a twin, I have no real understanding of that so I'll trust you to weave that consideration into anything I write here.

I hear your concern and doubts that your sister could live independently, away from the family and away from you. You seem to be saying she needs your continued involvement. I think it is useful to turn that around and question if it is you who has the problem of being seperated from her.

At 18, you are both young to go it alone into this world but plenty do - even though there are real risks and initially it can be hard. But at T8 I would have full confidence that your sister could be totally independent is she chooses to go that route.

I have no answers for you. Life isn't that easy. These hard decisions are the spice of greater maturity and it would be wrong for anyone to deny you the freedom to make your own decisions and take responsibility for their outcomes. Even a mistake can be a valuable gain in knowledge and strength.

It's not that big a deal that your sister is going to spend the rest of her life in a wheelchair. That is only a small part of who she is and will further deminish in time. So, next birthday expect to drop the bitter sweet and celebrate each other.

This is an especially exciting time of your lives. You lucky women.

Thank you And I have looked very hard into that question, whether or not it is me that is having the separation problems. And we've both talked about it extensively trying to figure out if we are ready to be apart or not and the conclusion we came to is that we would both like to, sometime within the next few years, live separate from eachother. We both agreed that it can be at the start of college or after college but it's got to happen soon, we want to try it. If we realize we hate being apart we will probably end up in the same city for the rest of our lives but I think it's highly likely we will be okay with separating and living on opposite ends of the country if those places are what make us happy. Of course I would miss her like crazy but lucky for us we have videochat so it's super easy to see one another it's practically like being in the same room. Our biggest thing is we both want to find a college that we can call home for the next 4 years, we've heard transferring is a pain in the ass and we both hope that we are absolutley in love with whatever campus we each choose and therefore want to be there for four years. So what happens if we both find schools we absolutely love and they're not close so we separate but then find out that we don't like being apart? I know no one can answer this, it's just more of a way for me to get it off my chest and what not...thank you again for answering my original post

[wheeliebear75]

I'm not sure in what state you live. But what about going to your state's university? This theoretically would keep her close enough to her current Dr.s that she most likely wouldn't need to find new ones. Also another + of being at a commutable distance for your folks would make it so that IF she had a super bad day than they could help. And if she & her boyfriend will be going to the same school then then this spring & summer will be a good time to teach him how best to help.

We all have times where technically speaking yes we could do it (shower, getting dressed, doing some chores or whatever) on our own but because of how much effort & energy it takes or because of pain we go ahead & accept help or even ask for it. This is a balancing act that all of us will have to figure out what is best for us as an individual.

[thing1]

wheeliebear75, on 22 December 2011 - 08:35 AM, said:

I'm not sure in what state you live. But what about going to your state's university? This theoretically would keep her close enough to her current Dr.s that she most likely wouldn't need to find new ones. Also another + of being at a commutable distance for your folks would make it so that IF she had a super bad day than they could help. And if she & her boyfriend will be going to the same school then then this spring & summer will be a good time to teach him how best to help.

We all have times where technically speaking yes we could do it (shower, getting dressed, doing some chores or whatever) on our own but because of how much effort & energy it takes or because of pain we go ahead & accept help or even ask for it. This is a balancing act that all of us will have to figure out what is best for us as an individual.

Thank you for the advice. We live in Texas so the whole necessarily being close enough to her current Drs isn't necessarily true but there are several universities that are close enough for that...I hadn't really thought about tht so again, thank you.