I Just Need to Rant!

This week has been family vacation.  For most that means packing up a few kids, all of their stuff, getting in a car or on a plane, and taking off somewhere.  If there are younger kids, it might mean zoos, aquariums, amusement parks, water parks, etc.  However, in my family, there is no such thing as a typical family vacation.  We are a family of travelers.  When I turned 13, my mom put me on a bus with my classmates to Montreal and Quebec for a week.  The following summer, at 14, I took my first plane ride.  From Buffalo, NY to Sydney, AU.  Nothing like a small trip to introduce traveling on a plane.  The following years brought school trips to Atlanta/Macon, Ga, NYC,  and Washington, D.C.  The following school year, I was a Junior and preparing for college.  This brought on our first "real" family vacation.  My mom and I drove for 12 hours that summer from Buffalo, NY to Nashville, TN.  I was looking at Vanderbilt University for their bowling program and got the travel bug back in me.  See, being from Buffalo, we live within 3-4 hours of both international and cross state cities.  We had done long weekend trips with my mom and my aunt to Toronto, Pittsburg, PA, and Cleveland, OH.  Those are all relatively close by.  However, getting in the car, driving to Nashville for a week, and then driving down to Auburn, AL from there was a whole different ballgame.  And I loved it!  So, this started many family trips.  In March of the following year, my grandmother passed away, virtually leaving my grandfather as the sole caregiver to my aunt.  She has severe JRA as well as other undetermined joint problems.  Virtually, at 30 years old, she had the body of an 80 year old.  And at that age, after having her second knee replaced, her body went haywire.  Now, neither of her knees completely straighten out, most of her joints are fused, her one hip no longer has the ball from the ball and joint socket.  She is physically just a mess.  And so drugged up on pain meds that there are days where all she does is sleep.  But they blame it on narcolepsy.  So, needless to say, you get the picture of what I am talking about.  

I loved my grandmother dearly, she had her own struggles, but I did love her.  She died very young, and was injured at work many years before that.  So, I was forced, around the age of 13, to step up to helping to be a caregiver for my aunt.  A job that at the time I felt was super important and took very seriously.  However, by the time I was in late high school and into college, I was exhausted from this role.  Because I had felt like I had lost so much of me in doing it.  My mom so often compares me to my aunt.  And truthfully, our entire relationship had become about how I could help her.  And I didn't want that.  But after my grandmother died, we began to take more "family vacations".  These family vacations have included Montreal, NYC, Boston, Nashville twice, and currently Atlantic City and the Jersey Coast.  Sounds great and exciting, right?  Yeah, well, not always.  Because on most trips that we take, I'm my aunt's caregiver.  I go from being the niece to being the aide.  My whole world has to revolve around her.  And on this particular trip, I feel like I am losing my ever loving mind.  We face accessibility issues all the time, especially with bathrooms.  Ugh, bathrooms are seriously the worst.  Because most aren't meant to hold a power wheelchair and two people over 250 lbs.   If we are lucky, we can maneuver in tight quarters.  However, there are also occasions where she has not been able to use the bathroom somewhere because of the size, or I need to remove the wheelchair from the stall because there isn't enough room.  While that may seem minor to some people, remember that while I'm doing that, she is still trying to hold her pee in because she needs me to pull her pants down.  

Notice though, as I write this stuff, that it's always me.  I am always doing this stuff.  If it's not my grandfather, it's me.  We worked in the same school up until next school year, when I go back to school full-time.  She used to make me give up half of my lunch so she could go use the bathroom then.  I was constantly just waiting to be called away by her for something, and it wasn't fair to anyone.  Finally I had to put my foot down and stop that.  And honestly, I will not be sorry next year to not half to be doing that.  However, the issue still remains of having to travel and do all the heavy lifting myself.  Because my aunt refuses to let my mom do any of the work.  She feels uncomfortable with her lifting her, because my mom has never had to do it like I have.  And it all falls on me.  I have become so irritable about traveling, because I'm exhausted and don't want to do it.  Because this isn't what real life should be.  Because I can't keep wearing out my body for her.  Because I have a life to live, and I'm trying so hard to live it, but I have her lingering by my side all the time.  All the fucking time.  And I'm so tired of it!  I just want to be me, have my life.  And not have to worry about her all the time.  Because I don't want to be her caretaker all the time.  Because I have grown to resent her so much over the years.  And I hate myself for that.  And I don't know what to do anymore.  And I'm just so sad with myself for being this way.  

Somedays the Realization is Hard

Two snow days in a row!  Woo Hoo.  Those are the best words for anyone who works in a school.  Especially when we are on this streak of 6 weeks, no days off.  These two days were beyond exciting, even if we did get 20 inches of snow.  But, it leaves the brain to do a lot of thinking at the same time. I am a huge hockey fan.  To me, hockey is life.  You an either blame if on me living on the Canadian border, or just that I live in a Drinking City with a Hockey Problem LOL.  But for us in Western New York, if you don't embrace the winter and the winter weather, you resent where you live.  So, we love our hockey, our ice skating, our snow sports.  We have a program here for our persons with disabilities, it's called SABAH (Spirited/Skating Athletes Bold At Heart).   In the winter, they ice skate and have a big show in the arena here where all their friends and family can come and watch them skate.  They also have other programs where athletes can play team sports together.  They have school programs, like the program that my school is involved in.  It's a pretty awesome program.  The show is in a couple of weeks, and everyone is getting excited.  

But the realization is that LegalQuad and I can't go to that stuff together.  Being a high level quad, he has no control over his body temperature.  When he gets cold, his body can't warm itself back up.  When it gets hot outside, he can't sweat to cool himself down.  It's just part of the injury.  But when I hear the words, 'I probably couldn't go', it hurts my insides.  Because I love to do things like that.  I love hockey, I love SABAH shows, I love Disney on Ice.  And I understand the why.  But it doesn't make it any easier to say OK to.  It doesn't make it better.  It just gives a reason for the No, probably not.  Once the winter comes, it's like my little hermit has returned.  Because it's too cold or too much snow to go out in.  

Sometimes I wish I had someone to talk to about this.  I wish I had someone to understand.  I wish I didn't feel so alone besides me and him.  Yes, it's us against the world.  But sometimes I feel like it's me against the SCI world.  

My Experiences

So, it has been a while since I have blogged.  I have been suffering from pretty bad depression lately. A little known fact about me is that I suffer from Bipolar II and Borderline Personality Disorder.  I was diagnosed when I was 19.  So, 6 years later, I'm doing pretty well and have learned how to cope much better than I was when I first started college.  But when things flare up, I isolate myself.  But I have been sitting around, reading a lot of posts on Facebook and message boards for Dev and PWD.  

A post that has been around for a while caught my attention again.  It is a discussion for those who have gone from a fantasy dev to a reality dev.  I am obviously now a reality dev.  Being in a long distance relationship with a C5 quad is an amazing feeling for me.  I am truly in love, and can't wait until we can close the distance.  Things have been a struggle lately, especially with the distance being double what it was in July.  But we are making it work.  We have to.  But it is a struggle.  We Skype as often as we can, but some weeks even that is sparse.  

I had never heard of Devs/Devotees until a couple years ago.  I was a huge fan of Covert Affairs and was completely attracted to Auggie Anderson, a character on the show.  For those who don't know, the character was an injured vet who was blinded in Iraq.  I was totally turned on by him being blind. So, I had gotten a Kindle and began reading books with disabled characters.  Some were blind, others were paralyzed.  But to me, they were so attractive.  I just wanted to keep reading and keep fantasizing about it.  At this point I was an unknowing fantasy dev.  I had written a story many years ago, when I first began to have "Dev Feelings" about a high school boy who suffered a spinal cord injury that left him a paraplegic.  I had joined message boards on AOL and Yahoo, trying to learn everything that I could about spinal cord injuries.  They intrigued me beyond belief.  And when I saw pictures of boys/men with spinal cord injuries, I would get really excited.  I struggled with these feelings for years, because they weren't "normal" and when my family learned about these feelings, they were not happy with me.  

So, really, for me, everything was always fantasy until I could make it a reality.  And it was difficult.  I was so excited to find a community that was like me.  Because for most of my life I thought that I was the only person out there who had these feelings, and my family thought that I was crazy for them.  I had been in a few relationships before my current one.  They were all able bodied men.  However, I was always still looking for that perfect guy.  None of them to me was perfect.  None of them were really sexually attractive to me.  My first two boyfriends were really more just the excitement of a guy asking me out.  They didn't last more than a month each, and there was a year in between them.  Then, my senior year of high school came, and I dated a guy for a few months.  He still wasn't right for me though.  

It amazes me now, looking back on my life in high school and college how unhappy I was because I was lying to myself.  I wanted what was considered a "normal" relationship because that's what I was told that I should have.  But I was not truly happy because I could not be myself.  Now that I'm myself though, I'm really happy with life.  Because I'm finally in a relationship that feels right to me.  

Feeling Isolated

Being a Devotee, I often feel very isolated when it comes to my relationship.  Not with my boyfriend, but when it comes to supports that many other wives and girlfriends receive.  Even though I am a dev and I chose and honestly prefer a relationship with a PWD, it doesn't mean that I don't deserve the support still.  My boyfriend goes through the same struggles as the other spouses with spinal cord injuries go through.  This is one of the struggles of the distance as well.  I'm not there when things come up.  I'm not there to learn how to handle situations.  And it makes being a SCI girlfriend difficult.  Because I can't give support and I feel like I don't deserve support.  

For a period of time after LegalQuad and I started dating, I was a member of Apparalyzed.  For those who don't know what that site is, it's a site for those with SCI and they have places for spouses and carers.  It is supposed to be a place of support.  However, because I was new to this world and didn't fit exactly like other spouses and loved ones, I was assumed to be a dev, which left me as a target on that site.  While I still may log in to check on certain subjects, I have learned to not add in my two cents.  Several months ago, after months of reading an online blog by a woman who's husband is a C4 complete quadriplegic, I decided that I was going to try a different support group on Facebook.  All the women in this group are incredibly nice.  They have so much knowledge about topics that come up in the world of spinal cord injuries.  And they really are accepting.  However, after a question the other day in the group asked if wives and girlfriends met their spouses before or after their injury, I realized that I'm still the minority.  Not because of being a dev, but because I met LQ so long after his injury.  Most of these women have been with their spouses through every step of their injury.  I see these women grieving and supporting each other through that.  I seem them talk about their experiences and their feelings, and I still feel like an outsider.  These women live the SCI life all day, every day.  They had no choice in the matter.  They have lost so much and have pushed through it.  Their strength is amazing.  

But I'm not that person.  I haven't been there through everything.  Hell, I'm still not there for most of it.  A few weeks ago, I went to an out of town wedding with LQ and his parents.  It was truthfully the first time I have really experienced the difficulties of the SCI life.  Not that we hadn't before.  There were weekends that we spent together when his aide didn't show up on time or that I needed to get him up or start putting him to bed.  But that weekend really put the difficulties into perspective.  But it's not something that I would trade.  The arguing among his parents I would have, but I would have liked to have learned how to problem solve some of the issues that we had.  Because when it comes down to it, those are situations that we will run into down the road together, and I need to be able to come up with solutions also. 

I feel isolated amongst so many groups.  I'm a dev, but I'm still a fairly new dev.  I've only known that  I'm a dev for a year and a half.  I'm still new to the SCI life.  I've only been with LQ for a little over a year.  I have so much more learning to do.  And I still need support.  Because when situations come up in the SCI world, you don't just know.  But it's nice to have someone to talk to about it.  And honestly, I just feel like I don't.  I don't know what kind of support I'm even looking for anymore.  I don't know if I'm looking for Dev support or other SCI spouse support.  But I'm lost right now because I don't know where I belong.  

Happy Anniversary!

Today is LegalQuad's and mine 1 year anniversary.  We met at the State Fair because that is where he was going to school and I knew that I would be able to convince my family to go out there (side note: I don't drive, which is why I needed my family to come with).  We were at a Luke Bryan concert the night before that caused us to get home extremely late and we had to be up early in the morning.  We drove 2 1/2 hours to meet who would become the love of my life.  He was dressed in a white wheelchair love t-shirt with khaki shorts on.  I was so excited and nervous to meet him.  I barely slept the night before, both of excited nervousness and regular nervousness.  No one in my family knew before we met that he is quadriplegic.  Needless to say, that did not go over well with myself and my family.  However, after a year and multiple trips to go visit LQ, things have gotten better.  When he took the Bar Exam, he was in my city to take it, so he came over a couple times during his 4 days here.  

This year has been crazy and incredible all in one.  I have been happier with him than I ever have been before.  He is understanding to my over-emotional self.  He sometimes even gets weepy with me.  We have both given our all to each other.  He was my first and I was his traditional first.  I was the one he experimented ED medications with.  He has let me explore as much as I want.  We honestly have full trust in each other.  I have cried out of excitement, fear, and sadness of having to leave him.  I have learned not only the the amazing parts that come with having a boyfriend who is a high level quadriplegic, but the challenges that come to having a boyfriend who is a high level quadriplegic .  I stayed up the night his aide never showed and he had to call emergency personal for help getting into bed and emptying his leg bag because of the shocks and pain he was experiencing.  I have learned what shocks are, and that we need to figure out what is causing them before they lead to AD.  I have laughed until my belly hurts at his goofiness.  I have worn daily since Christmas the turtle ring that he got me.  

I would only trade about 1-2 days of this relationship.  He knows what I am talking about when I say that.  It was a rough weekend where nothing seemed to go right.  I was really upset when I left because nothing went as planned that weekend.  However, that's how relationships work.  Nothing is perfect.  And honestly, that's how we learn more about each other is when these rough weekends happen.  Things are never perfect in any relationship.  And we learn how to overcome things when they are not perfect.  

Both LQ and I have grown so much with each other over the last year, and I cannot wait to see where we go from here!  I love you babe, and can't wait for the rest of our lives.  

What is Happening?

Honestly, this is a more personal post for me than anything else.  My life is crumbling before my eyes.  I have had to make the decision to leave my graduate studies program that I was attending for multiple different reasons, but the last straw was that one of my teachers has decided that I was not ready to be a teacher and student teach and took it upon herself to go to other faculty in the program and it was agreed to fail me in one course so I would not be ready to student teach in the Spring.  This leaves me with tens of thousands of dollars of debt for nothing.  

This also leaves me with a boyfriend who doesn't know if he wants to be with me anymore.  Long distance is never easy.  It is especially not easy when he spent months prepping for the Bar Exam and I spent the rest of my summer crazy busy.  However, when you live in the Northeast United States, you learn that summer is short and winters are long and that you need to enjoy the summer while you can.  However, this does not leave time to go visit your boyfriend who is now 6+ hours away from you instead of 2 1/2.  This has been a struggle that has been incredibly painful and honestly taking a terrible toll on us.  And as hard as I try to not let it, it just is.  Even though I can do nothing about it.  Especially since I go back to work on Thursday.  

And now, I will go back to crying myself to sleep because I don't know what is happening with my life.  Maybe I'm not meant to ever be in a relationship.  Maybe I am destined to spend my life alone.  Maybe I just shouldn't be alive.  Maybe I am really a nobody and a nothing.  My life plans have never really worked out.  Maybe this is just a continuation with that.  

Firsts

I have spent a lot of time thinking the last few days.  I'm not sure what has gotten into me lately, but I have been extra melancholy compared to normal.  It's not necessarily a bad thing, but it leads to a lot of thinking.  I almost failed a class at school, but luckily the professor gave me an incomplete, which was very generous of her.  So now I have a few more weeks to finish up my work and turn it in.  But, that's not what this post is about.

Tomorrow is LegalQuad's and my 1 year talkivessary.  This is huge to me.  Given my past, I was really afraid that I would never find someone that I loved and who loved me back.  This has truly been an amazing year.  It is crazy that it has been a year since he first sent me an email.  The email read

So how is life in (blank)? My brother is going to school there , and I am going to school in (blank).zI am not vent dependent, but still a high-level quad.maybe we could meet up sometime

It was amazing how someone I was so interested in could live so close to me.  We are only about 2 1/2 hours apart from each other right now.  On August 9th he gave me his phone number, and on August 10th we stopped talking through the messages on the website where we met.  One August 16th we stopped just texting and began to Skype with each other.  You see, there are a lot of firsts coming up.  Tomorrow is the first of many big firsts with out talkiverssary, and on September 5th it will be our 1 year anniversary.  On September 3rd, before we met for the first time in person, we talked on Skype for over 4 hours.  We had done a lot of phone talking, but this was such a long time.  We chatted, I "met" his aide for the night, an we just talked and enjoyed each other's company.  I am not going to get into our first "date" AKA our first time meeting.  That will be a post for our anniversary.  

I just went back and re-read our first few talks.  And I laughed at them.  Because he was new to the Dev game, and I was too, and neither of us knew what to say or how to act.  We have learned so much from each other over the last year.  We have learned to relax a bit as well.  I was reading the Blog New Dawn, New Day, New Life the last few days, looking back on Kristen's blogs.  While we are not 100 % in the same boat, there is so much overlap also.  I think about all the firsts that we still have to go with each other, and I am thrilled to think about them.  Truthfully, they give me something to look forward to.  They give me the drive to graduate and find a teaching job so that I am no longer tied down to where I live now.  I have read so many stories about quads who have been fathers post injury, and I look forward to that first time.  I never posted a blog post about the first time we had sex.  But that was my first time ever, and it was quite the adventure.  But it just adds into the experience of firsts.  

My first time staying the night at LQ's apartment led to a complete breakdown, because I wasn't mentally prepared to witness and be part of his care.  But I knew that I wanted to be.  It was definitely an area that I struggled in for the next couple of visits.  However, it did get better, and now I am just used to it.  When his aide gets there, I go to the couch and sleep, and once he is in the bathroom I can go back to bed and sleep in bed until he is done.  It is just routine now, and doesn't really bother me much.  He likes to joke with me about how I can just go from one place to another.  I was really worried though about handling the aides, especially after the meltdown that I had.  But together we made it through that.  

I love when I am able to look back on our firsts, and see how far we have come from those firsts.  And I love to think about what our new firsts will be like.  I can't want to see where life takes us from here, but stay tuned and I am sure you will find out!