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!

The Ten Things I've Learned From Dating a Quadriplegic

As I travel back home from an ever glorious weekend with my boyfriend, I can’t help but think about what I have learned over the last 7 months in this relationship.  This relationship has not been easy by any means.  While we live 2 ½ hours away from each other now, his home is actually 6 hours away.  Breaks, vacations, and holidays are spent 6 hours away, and I am reminded again what a real long distance relationship feels like.  But there are so many things that I have learned though. 

1.        Patience is a Virtue. 

Each and every day that we are together, I remember this.  Because very little of what we do can be done at the drop of a hat.  Whether that be eating, going out, or going to bed, it just doesn’t happen quickly or spontaneously.  Yes, some of this stuff we consider to be spontaneous, however, they may be a 20 minute ordeal.  But that’s ok, because we get to do it all in the long run.  And the more we do things, the quicker I get at them.  This trip, for the first time, I was using a different hoyer lift system to transfer him from his chair to the bed and back.  Learning something new, scared the crap out of me.  But, we did it.  And I mean we, because it took him walking me through things and being patient with me as I learned how to do it without hurting him or dropping him (which is one of my biggest fears). 

2.        Learn to Trust Yourself

Getting into any relationship is taking a big leap of faith.  Getting into a long distance relationship with a Quadriplegic, an even bigger leap of faith.  And I needed to learn to trust myself and my abilities, because he counts on me for things.  The first time I went to spend the weekend with him, I had a freak out after I left.  Because I wasn’t sure I could emotionally handle the physical hands-on needs.  But I took a step back and looked at myself.  And we talked it through.  One of the things that helped me the most was learning how to help my boyfriend by one of his aides.  She taught me a lot of the ropes, from transferring him in and out of bed to range of motion stretches in the mornings, right down to how to change his leg bag/night bag and even how to manage his bowl program.  And I have begun to develop a trust in myself to be able to do this.  It has not been easy.  And I still worry about doing certain things, but I know that I could do it if I need to.  Being able to trust myself lowered my anxiety in the relationship, and it honestly helped us to be more open about things. 

3.        Communication is KEY!

The last two things that I have listed are nothing compared to this one here.  He and I have really learned that we need to talk about everything.  We have talked about everything, the good, the bad, and the ugly.  We know each other’s fears and concerns and what really pleasures each of us.  One of my biggest fears has been that I have not pleasured him enough, because I am pretty limited in the physical pleasure department with him.  But we talked it through, and his pleasure comes from pleasuring me.  But it’s not something that I would have known otherwise.  Because up until we talked about it, and until this weekend, I was terrified that I wasn’t satisfying him enough.  I learned though that I really am satisfying him, and he does me.  We discuss so many different things and I could do an entire post just on that.  We discuss at length our comfort levels with each other doing things, and especially me doing things for him.  He is worried about me becoming overloaded and resentful, which is understandable for him.  But we talk a lot about this to be sure that I am alright doing things, which I am. 

4.        It’s Not All About The Penetrating Sex!

Yes, as a complete quadriplegic, my boyfriend cannot get a hard on.  Possibly with pills he could, but without them, it’s just not happening.  Honestly, right now he is actually suffering from Penile Retraction also.  This makes it where his penis likes to hide in plain terms.  It goes back in on itself, almost like it’s in a protective stance.  No matter how much I play with it, it does not come out.  But as I tell him, it’s OK.  Because it’s not about the sex.  He can pleasure me in other sexual ways, and he certainly does.  I have done a lot of research, looking for new and better ways to pleasure him.  And he appreciates everything that I try. 

5.        Being Creative is Important

This in a way goes back to number 4.  I have learned to be creative in my ways of both pleasuring and multitasking.  While we, at the moment, cannot have penetrating sex, I had an idea of giving him a back and shoulder massage while he was on his stomach in bed.  This was not an easy feat by any means.  Because I thought through how to roll him onto his stomach, but not how I was going to roll him back over again.  And I kind of freaked out trying to not completely lose it.  But we got through it.  And he really enjoyed not only the massage, but the fact that I was looking for more creative things to try to please him as best I could.  The same can be said about how we spent this weekend, with me finding new ways of cuddling because his bed was in a different position.  We have learned creative tactics. 

6.        Service Dogs ROCK!

So, my girl Illi needs to get a shout-out here.  I love this dog, and I have learned a lot about service dog etiquette in the process.  I was not new to the disability world when we started dating, but a service dog was not something that I had ever really encountered.  I have a friend who has trained her own service dog, but it was a different type of service dog.  Miss Illi though, she is really awesome.  And of course we have people staring at us all day when we take her out, but what person wouldn’t do a double take when they see an 85 lb Golden Retriever walking around the mall?  I personally have a little more of a relaxed view on how people approach others about service animals.  However, I hate that they just do “drive-by pettings” when they walk by and just touch her, even if they are asked/told not to.  It is a huge pet peeve of mine actually.  However, Illi does play an important role in my boyfriend’s life, which is important to me. 

7.        Things Will Happen That Are Out Of My Control

This is a hard lesson for me to learn.  Because I want to help and stop everything that can be harmful or hurtful.  It’s just my nature.  But I can’t, I’m still only human.  And I hate that!  Where my boyfriend’s injury is, he gets what is called Autonomic Dysreflexia.  In other words, it’s a warning system that something in his body below his level of injury is uncomfortable.  It doesn’t necessarily need to be a pain signal that is causing it, it can be something as simple as a wrinkle in his pants or something as severe as his catheter is clogged.  However, it leaves him with high blood pressure which can be potentially serious.  And it kills me deep inside when he goes through that.  Because I know how dangerous of a situation it can be.  And it honestly scares the crap out of me.  But, I also need to and have started to realize that there are things that happen that are not in my control, and they can never be.  When we are together, there are things that I can do to try to alleviate the discomfort, but I am not in control of it all.  These are just natural warning systems that his body has.  And being with a quad, AD is GOING TO HAPPEN, NO MATTER WHAT! 

8.        Aides: You Can’t Live With Them, You Can’t Live Without Them.

The first weekend that we spent together, I met his one aide.  I was only there Saturday to Sunday, and we only spent the one night together.  But I really liked this aide.  So, the next time I went to see him, I was there Friday night to Sunday.  Friday night I met a different aide who just wasn’t 100% sure about me and me being there, which I understand.  But I have said my peace to my boyfriend about his aides, LOL.  While he has a couple that are really good, they all seem to have time management problems that hinder on him going to bed.  And when I’m there, on me being able to go to bed as well.  And when I don’t sleep, I am not a pleasant person, LOL.  Anyone who knows me can attest to that.  However, after getting him into bed this weekend because we did not know if one of his aides was going to show up, I can say that I really appreciate them and what they do for him.  His aides are pretty easy going with me around even, which I really appreciate.  And the one even helped me learn how to care for him if we need to, which will always be helpful in the long run.  So really, you can’t live with them, but we certainly can’t live without them. 

9.        There Will Always Be A Learning Curve

As we get older, we think that we know so much and everything.  It’s all part of growing up.  Especially when you are in your 20’s and trying to live your own life.  However, this life that I am moving into is one that is more difficult than the one that I’m coming from.  It comes with more medical things, more steps, and more planning.  However, I am learning through all of it.  I am learning about myself.  I am learning about him.  I am learning helpful information about what a real relationship is, and what it’s like to have someone love me.  I am not going to learn everything overnight about him and how to take care of him and how to love him best.  But the point is is that I’m learning.  I am learning every day.  At least once every two days I am looking online for new information on how to make our relationship the best that it can be.  I spend a lot of time asking him questions that only he can answer.  Because that’s how I’m going to learn.  And he is a great teacher about not only the physical parts of his disability, but the emotional parts as well.  I have learned his vulnerabilities, his worries, and what makes him feel better.  And I have learned that we both need a lot of reassurance LOL. 

10.    Lastly, This Is Just A Normal Relationship In Many Ways

We are both pretty fresh into relationships again.  I was never one to really date a lot, and neither was he, both of us for various reasons.  We came into this relationship with our worries and concerns, but our excitement and pleasure as well.  When we met for the first time, I was ecstatic, and just couldn’t control my excitement, worry, and giddiness LOL.  While we face different challenges that a lot of couples face, they are not any more difficult than what others face, because you don’t know what goes on behind closed doors.  We have the good, the bad, and the ugly in this relationship.  But I love him to pieces and cry so hard every time we have to leave.  And to me, that is what true love really is.  I don’t love him despite his wheelchair and paralysis, it is just another reason that I love him.  I don’t ignore the disability, I embrace it.  I take joy in the things that we can do and I don’t focus on the things that we can’t.  Because that’s what a relationship is all about.  We do a lot of give and take, and there are definitely times that I feel like I am giving more physically than what I am taking.  However, I know that emotionally he is giving a lot as well.  We face challenges, but we get through them, with a smile on our faces and love in the end <3

The Hardest Thing I Do

Every day, I get up for work.  I work with children who have severe disabilities.  I am hit, kicked, spit at and screamed at almost every day.  It is not an easy job.  And we are coming off an incredibly difficult period of time at work.  The kids were off the charts, they were angry, violent, and just completely unpleasant.  And I wasn't sure how I was going to get through it.  But, we trudged through, and made it through.  Not without threatening to quit several times.  Things finally seem to be calming down a bit in life.  

But that isn't the hardest thing that I do.  

My boyfriend is a C5 complete quadriplegic.  He has no purposeful movement below his elbows.  His elbows bend, but do not straighten without letting gravity take a roll.  His hands are completely paralyzed, as are his wrists.  He needs help with many different things.  He cannot just get in and out of bed whenever he wants.  He cannot just eat whenever he wants.  When it's cold outside, he cannot even just go outside whenever he wants.  Thank God his service dog is so great and can go outside without her leash sometimes, because he cannot even hook her up by himself.  Being a devotee, I am attracted to the paralysis.  No one ever said I have to like the difficulties that he faces.  Because honestly, they can be very tough to watch.  Especially when you are watching through a computer screen.  

However, this still isn't the hardest thing that I do.  

The hardest thing I do every day is when I have to say goodnight through a computer screen.  And I crawl in to bed, alone, curled up with his sweatshirt wishing that I could have more than that.  That is the hardest thing I do.  The hardest thing I do is hold in the tears when all I want is my boyfriend and to be a typical couple.  But we are not.  And I just keep pushing through until we can close the distance.  But on nights like last night and tonight, I just keep thinking about the hardest thing I do.