Recently my husband and I took a week long vacation to visit a friend in Florida. I distinctly remember one day when he was helping me with all of my bathroom duties, getting my swimsuit on, lifting me up from a very low surface bed (killing his back), lifting me into the pool, showering me by the pool, helping me with my makeup, straightening my hair, and then cleaning up. These are just a few of the things he’d helped me with that day, but the list really does go on.
The numerous amount of small things I need help with in a day seem endless whether that be filling my water bottle, fixing my feet on my wheelchair, grabbing my legs as I have uncontrollable spasticity, getting me in bed when my pain is through the roof, etc.
The day came and went, and as I was hanging out with my girlfriend I rolled back into the bedroom to find him sprawled out on the bed. He was just tired – I mean how could he not be? He was taking care of his quadriplegic wife 24/7 for 8 straight days. I remember thinking how guilty I felt for being such a burden, but not once did he make me feel that way. These are my own demons I battle with as a quadriplegic because I need full-time help every day – all day.
Honestly, I’m exhausted just being a quadriplegic on a daily basis, but the thought of having people helping me who love me is the most incredible feeling in the world, but aa lonely one at the same time. I constantly have feelings of guilt, gratitude, love, and frustration with this life of paralysis I lead, which I will continue to lead the rest of my life. There are some days, even with my incredible determination, I just shudder at the thought of being a quadriplegic for the rest of my life. That’s just a fact and my reality.
On a regular basis I hire caregivers and pay them privately for 12 hour shifts 6 days a week. My caregivers are obviously not working 12 hours constantly, often have much downtime in the day as I sit to work, and even as I write this article. They then get to go home and have multiple days off a week to recharge their batteries to come back to work. Of course I also pay them because it is their job even when you build a wonderful relationship with a caregiver; they still get to disconnect from your life to take care of their own lives. I do not have the luxury of disconnecting from my own life, nor do my loved ones who are with me every day.
I know many fellow quadriplegics who are married and have their spouses as their full-time caregivers. Frankly, I’m actually not sure how they do it.
My mother has spent her fair share of time over the last decade taking care of me 24/7 in her late 60’s and 70’s when I’ve been abandoned by caregivers as well. To this day I still don’t know how she does it with a smile on her face. My family’s incredibly supportive, but none of them have ever taken care of me on a daily basis either. It’s not for everyone.
I am always a happy-go-lucky person when interacting with people and never take out my frustrations on other people even though I realize this is not always the healthiest outlet, but I’ve learned to compartmentalize many parts of my mental life.
When I started dating my husband I very slowly eased him into the life of spinal cord injury – from my bowel program to catheter care to shower to dressing, etc. over the course of a year. I really wanted to develop a relationship with another person based on our personalities and not centered on the life of a quadriplegic. This is not an easy thing to do.
I would hide when I had bowel accidents, catheter problems, not let him in the bedroom when I was getting dressed, and have my caregivers put me into bed before he would join me. Eventually he told me that it we were going to travel together and be together he was going to have to learn these things. Of course he was … If you’re going to have a full partner in life whatever your life situation may be, you have to be completely open, and honest with that person if it is going to work.
So, over many months he slowly learned how to take care of me until we took our first vacation alone together on a cruise to the Caribbean. I’d never been on a cruise before and I was nervous about so many things. I was not nervous about traveling, but about having one single person take care of me for 14 straight days 24/7. It’s not as if he would be able to take a break from me, and I will be writing another article for another magazine on our trials and tribulations during our first year of marriage in the New Year, but for the purposes of this trip, in all of my 7 years of being paralyzed at that point, I’d never been alone with anyone taking care of me for that long of a period of time.
The immediate thoughts that popped into my head all centered around caregiving. I wanted to make sure I enjoyed time with my then boyfriend, now husband, but not completely exhaust him, so we could build on our relationship & enjoy vacation too.
As the days went by on vacation we definitely enjoyed ourselves, but he was on the go the entire time. He barely made time to take a moment for himself because there was always something to do for me. Don’t misunderstand me, not once did he ever complain, and he always wanted, and continues to want to make me happy. However, he’s only human. He gets tired, he needs a break, and he needs some personal time too.
How do we deal with this?
Well, in my daily life I have a regimented schedule with how I work, when I do things, how I like them done, etc. You may say I have a slight case of OCD, but I think it’s my mental way of coping with my accident since I can’t take physical care of myself. I like to have immense mental control of how and when I do things. This is a lot more feasible when you have caregivers working on shifts to work with your schedule in particular.
In a relationship, and particularly in a marriage though, compromise is the name of the game regardless if you are with someone who is paralyzed or not. It took me many years to learn this, but I have to compromise on things such as the timing of how we do things, the exact process of how I get dressed, taking our time more slowly to get ready, etc.
This may seem small, but for me it is giving up mental control, but this allows for a more intimate relationship with my husband. He is only one person and while he enjoys making me happy, it’s my job to make him happy as well. I can’t always do what I want to do when I want to do it, unless it’s medical in nature, so I’ve had to learn to chill out as well.
So what if we don’t get everything done in a day on my list that I had planned on vacation? My husband constantly reminds me that even when he is giving me a shower or getting me dressed or helping me go to the bathroom that it is quality time that we are spending together. The point is we are together.
Of course we have our fair share of spats here and there, get on each other’s nerves, get frustrated, but there’s one main difference, in my opinion, that sets an inter-abled relationship apart from an able-bodied relationship.
– SPACE –
When you get in an argument with your spouse or significant other you both have the ability to walk away, cool down for an hour, and then come back to the table to have a levelheaded conversation. In an inter-abled relationship, especially with a husband who is taking full-time care of a wife whether that be for 1 day or on a regular basis, you cannot just leave most quadriplegics alone for an extended period of time.
This can be incredibly challenging because when you want to say something or you are frustrated, you have to think very critically about what comes out of your mouth. You should probably do this anyway, but we are only human beings and sometimes we say things we don’t mean, have a chance to cool down, apologize, and move on.
However, when you don’t have the opportunity to leave the other person alone you have to be more gentle, kind, and figure out a way to cool off in your head very quickly before you say something that might lead the other person to want to walk out of the room.
From my perspective, it can be terrifying because if I am frustrated and I want to say something, and I actually say it, and if he actually left, my anxiety would go through the roof because that is one of my biggest fears — being left alone physically only to have a medical disaster ensue shortly thereafter.
I’m extremely strong-willed, but this is my kryptonite – the fear of dying alone because someone wasn’t there to take care of me.
So, when tensions run high I have to find a Zen like space in my head and cool down more quickly than most. Mind you this does not happen often as we communicate quite well for the most part, but as with any marriage, it takes work. An inter-abled marriage just takes a little bit more work, but when you love a person, as my husband reminds me all the time, you do what you need to do for love.
Of course we don’t always get along, but I would say we are leaps and bounds ahead of a majority of couples out there. My husband works nearly 12 to 14 hours every single day and still finds time to garner the energy on the weekends to take me out. It’s a lot on him, but there are compromises on my side as well. It takes a very unique individual to marry someone with a severe disability.
I know this may not be the most PC thing to say, but there is a lot that comes with marrying a quadriplegic. If you’re not up for the task – that’s okay- just as some men or women are not up for the task of taking care of people with different disabilities such as severe diabetes, chronic illnesses, etc.
I do strongly believe there is someone out there for everyone, but you do have to perhaps weed through dozens of frogs before you find a prince. Even when you find your prince, royalty is not an easy job 😉 I think about the Royal Family in England and how so many are envious of all of the riches and fame they have. I take a deeper look inside and absolutely do not envy pondering the amount of obligations, responsibilities they have to the people, what they are not allowed to do even if they want to, etc.
There are strings attached with everything in life, I suppose that’s life really. It’s a matter of figuring out which strings you can live with and which ones you cannot.
No matter what challenges my husband and I may face the most important thing in life is kindness. Think about the other person’s feelings if you are feeling hotheaded before you say something you may regret. We all make mistakes, but success in any relationship is a function of mending those mistakes once you make them, and forgiving each other.
Life is just too damn short. It really is. You just never know what is going happen from one day to the next, so why spend your life in frustrated all the time!
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