Compromise – I mean really, who wants to compromise? Wouldn’t it be great to always have our own way? Compromise is a part of life and whether we choose to accept it or not is probably the difference between finding happiness and feeling very alone.
I’ve been dating my boyfriend for nearly 2 years and while we’ve been on trips together we’ve never been on a solo trip where he was solely responsible for taking care of me. I must admit I pushed this day off as long as I could for a multitude of reasons. It took me a year before I even let him into the spinal cord injury aspects of my life with respect to getting dressed, bowel program, catheter care, showering, etc. I wanted to keep the romance alive because I never thought there were men out there that would want to or be willing to dive into certain aspects of my caregiving.
Well, the time finally arrived this Christmas where I had to make a decision. I was heading down to Atlanta to join my whole family for the Christmas holidays and the question arose as to whether I was going to bring a caregiver with me in addition to my boyfriend or just attempt to fly solo with him taking care of me.
The idea of a man I was intimately involved with having to take care of me throughout the entire day was more than overwhelming.
I love him so much, but I wanted to make sure that I did not blur the lines with respect to having my loved one become a caregiver because I firmly believed it would change the nature of our relationship.
With respect to taking care of me, most aspects are not very sexy but need to be addressed. Over the last year, he learned how to do my bowel program, change my catheter, dress me, shower me, etc., but only in stages. We had not tried a 24-hour period of taking care of me alone, which was completely my choice. My definition of intimacy throughout my life definitely erred towards the side of sexuality.
I couldn’t understand how a man could still feel intimate and sexual towards me if they were helping me go to the bathroom, and dress me among other things.
We want to spend our lives together and he has been so gentle in pushing me forward to help me understand that he loves me, all of me, and all that that entails. He has shown me such kindness and love, which I did not think existed. I’m sure this stems from my early years of prancing around the world, dating men, and then deciding to leave the country to embark on another adventure if the relationship did not work out. I would have to say this is my first real relationship and I’m already in my 30’s.
I decided to spend seven days down in Atlanta with my whole family. My boyfriend and I agreed that we were going to try it alone without the help of my mom or a caregiver. The fears running through my head were endless. The question of my entire family loving him was a non-issue for me, but the question of how we would work together in a caregiving environment when I did not want him to be my caregiver was a completely different ball game.
We set out on our 8 Hour road trip to Atlanta from Raleigh. I was excited, nervous, and didn’t know how this might change our relationship after being alone together without anyone’s help for a week. There are so many things that need to go into getting me ready in the morning and before bed that I need to make time allowances that most people do not think about. Most folks just roll out of bed and get together to have breakfast. I have to get up two hours early to go to the bathroom, get dressed, clean everything up, and then allow time for my boyfriend to get ready as well. Needless-to-say we were quite exhausted, but we made it work. We had a wonderful time with the family and I was so heartened for my family to see the love we share together on a daily basis.
However, the trip was not without its challenges. I learned a tremendous amount about myself, my boyfriend, and the dynamic of working together with someone to take care of me who loves me as opposed to a paid caregivers whose job it is to manage my healthcare.
If you are lucky enough to find a caring caregiver who does a great job you must remember that it is still a job for them.
There is a financial transaction that takes place for someone to take care of you. While you may grow a bond with one another you still have to pay them. This is their livelihood, this is what they do, and this is their career. With that said, when you are working with a caregiver you can teach them how you like to do things in a very specific way, time, and on your schedule.
Leaving my super “SCI” mom, as I call her, out of the equation for a moment because she would do and does absolutely everything for me — anyone else offering to help take care of you whether that be a friend, boyfriend, or family member who does not get paid to help you, but rather helps you out of love, well, the dynamic is completely different.
For seven years I’ve only had the experience of working with caregivers who learned my routine my way. There was not much compromise because I have learned the best and most efficient ways to be taken care of. However, when someone who loves you is taking care of you an entirely different level of compromise needs to be taken into account, which I learned a little bit of the hard way over Christmas.
I didn’t realize with my boyfriend that the way I like to be taken care of is oftentimes uncompromising and rigid. I like things done a certain way, at certain times, and, frankly when I want to do them. Boy did I learn some hard lessons within the first 24 hours! Over the course of several days we did not fight but rather got into small little arguments about how to do things, when to do them, and timing over how to do them. Fortunately, we are the type of couple that kisses and makes up five minutes later, but there were definitely some frustrations that lingered with respect to my healthcare. For example, I have a certain way of getting on my pants, which has worked for me for seven years, but he has another way that he thinks works better. It seems silly I know, but it did create some tension until I came to the realization that if he gets my pants on, what does it matter how he gets them on? Is it more important for me to have every little detail done to my specification and cause tension between us or just go with the flow?
In the past whenever I went with the flow with caregivers things always went terribly terribly wrong for me. Essentially, I had become hardwired into my thought process on how everything should be done because if things do not get done the way I wanted them in the past I usually got injured. I completely neglected to think about the fact that the person taking care of me was doing it out of love and they, like my mother, were going to pay extra special attention to make sure I was not injured. I was having to rewire my thinking to let go of the small stuff. There are definitely some things that I think are more efficient the way I do them and he does not, but we are a work in progress 🙂 When you are working with a caregiver there is not as much give-and-take with respect to how you are taking care of, but when you are in a relationship with a loved one the concept a compromise becomes much more critical to the health of your relationship. I generally like to think I go with the flow with most things, but with my caregiving, I didn’t realize how rigid I had become.
I also did not take into account the fact that when you are working with a caregiver they get days off to rest, relax, and recoup before coming back to you. When a loved one is taking care of you they are with you all the time and they also need a break or a period of relaxation. I did try very hard to be aware of this and split up my caregiving into sections throughout the day so we could both enjoy ourselves. Sometimes I push to get all of my caregiving stuff done more quickly so I can enjoy my day with everyone because I look at getting ready as tedious, time-consuming, and not particularly fun. I was reminded by my boyfriend that even when we are doing all of the caregiving stuff he is spending time with me, which makes him happy. It had not occurred to me to think like this because I believe the caregiving aspect of my life is not much fun at all.
Over the course of a few days we eventually set into a rhythm with a few little arguments here and there, but, as I mentioned above, we are the type of couple that talk about things, and move on from them very quickly.
On our drive back to Raleigh last week I told him I wanted to write a blog on the lessons learned from our trip, so we started discussing how we felt about how things went. Despite our disagreements here and there, we both concluded that this trip strengthened our relationship and that we both felt comfortable with being able to go on a trip together alone with no one’s help. Just as each couple has their own disagreements about this or that, mine generally stem from caregiving. This is just because I am paralyzed, but if I wasn’t paralyzed I’m sure there would be something else.
No relationship is perfect despite our pretty cool love story, but the fear of going alone with someone I love on a trip has dissipated greatly.
I truly thought the nature of our relationship might change, which is probably why I put a trip off for so long, but I learned there are men out there who love deeply enough to do whatever it takes to be with the person. While I consider much of my caregiving routine a big deal, he does not. He goes with the flow and puts up with my eccentricities in this department quite well 🙂
I think I can safely say that we’ve taken our relationship to the next level in a mere seven days and can attribute this success to being able to communicate to one another, be compassionate towards the other even when frustrations run high, and most importantly not hold onto those frustrations. As with anything in life when you hold on to anger, negativity, frustrations or anything that causes anxiety or stress it can lead one down a very dark road, both personally and in a relationship.
At the end of the day when I wake up in the morning, the first thing I want to see is the man I love snuggling up with me and kissing me good morning. Everything else in life we will figure out together.
- My First Solo Trip with my Boyfriend as a Quadriplegic – The Art of Compromise - January 6, 2018
- CAREGIVING for Quadriplegic – Living in Fear or Trust? - December 10, 2017
- Danger: How Negativity About Disability Can Create Chronic Inflammation - November 18, 2017
- Spinal Cord Injury Sexuality: How I (Unexpectedly) Fell in Love - November 9, 2017
- How I Vacation as a C6 Quadriplegic - October 28, 2017
- My Lifelong Science Experiment - September 24, 2017
- The Game of Survival: Managing Fear and Health as a Quadriplegic - August 13, 2017
- Splashing Back into the Water: How I was going to swim again as a C6 quadriplegic - July 31, 2017
- My Year in Bed: Sanity Saving Antidotes + How My Life Changed for the Better - July 6, 2017
- Spinal Surgery in China – “To Die or Not to Die?” - June 22, 2017