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
