SCI Awareness,  Wheelie True Stories

One Year of (Knowingly) Dating a Quad

Hi! Emily here. For Spinal Cord Injury (SCI) Awareness month, I’m writing from the perspective of “knowingly” choosing Wheel Love from the forefront and not having to transition into it. When Will and I had started dating, he was already 3.5 years post-injury. In fact, I never even knew Will as someone without a SCI, and we likely wouldn’t have met if his accident had never happened. I often joke that I probably wouldn’t have dated him if he never had a SCI (our city girl and redneck boy roots may not have meshed that well).

I want to be open and upfront about what I’ve experienced so far to shed light on inter-abled relationships and particularly choosing an inter-abled relationship. You’ll see that we experience some challenges, but that’s like any other couple. Outweighing those challenges is a heck of a lot of happiness, laughter, love, adventures, and so much more. I’m not saying an inter-abled relationship is better, but I am speaking as someone who’s been in able-bodied relationships before. I feel that being somewhat aware of what these challenges may be can truly allow you to enjoy your inter-abled relationship for all it has to offer. Yes, there are things Will can’t do– but none of these things have gotten in the way of us having a wonderful relationship. Our relationship has complimented me in a way that no other relationship has before as it’s let me grow as a person while maintaining my independence and identity. It’s let me be goofy and carefree, while providing me with comfort and a sense of support during the toughest of times. It’s showed me what’s important and how to appreciate the little things. I could go on and on, but you’ll probably get sick of reading! 

Will and I met in 2017, and remained friends for about 2 years before dating. The turning point in our friendship was when I accompanied Will as his “attendant” (I’ll get into this a bit later…) on his first major flight post-injury. As I thought I was strictly supposed to be his “attendant”, I spent lots of time helping him out and that led to us getting to know each other on a deeper level. We were both in other relationships at the time, so we stayed friends for a while. Turns out our respective relationships were quite toxic for each of us, and both of our relationships ended shortly after our trip. The “lightbulb” really went off for me just seeing how supportive and caring Will was after my grandpa had passed away. He’d constantly check-in and work endlessly to keep me happy and calm all the way from BC when I was back in Ontario with my family. We just really enjoyed being around each other, and all of our friends harassed us with the “just date already” comments that entire summer. Well, obviously we gave in and now it’s been a crazy year that I wouldn’t trade for anything.

Prior to living together, Will and I lived 2 hours apart, and would see each other every Wednesday/Thursday and most weekends. With that, we experienced the “honeymoon” part of dating for a longer period of time, as we wanted every time we saw each other to be different and exciting. Here are three pieces of advice when it comes to the things you do for keeping your relationship exciting and fun:

1) Assistive Technology is your Best Friend.

Will’s front drive and free wheel have allowed us to do some beautiful hikes and trails we wouldn’t have been able to do otherwise. I recommend investing in as much as you can – as each piece of equipment helps with barriers (fatigue, uneven terrain, you name it). These things can be pricy, so look into peer groups/organizations for contacts and opportunities to get these items for cheaper.

2) Call Ahead & Plan Ahead.

When planning getaways and excursions, calling ahead is key. There are so many unique considerations you’ll have to think about when planning a trip (e.g. roll-in shower, access to an elevator, bed height, etc). Calling ahead allows you to speak to a real person and really emphasize why these requests are so important to have. Leaving a note online works too, but it gives more opportunity for the urgency of your request to be dismissed. 

3) Never Assume Anything.

Here’s where I come back to the attendant part. When I was on our Quebec trip as Will’s “attendant”, I immediately assumed I had to help him with EVERYTHING (I mean everything). This was good for our relationship (heck it let us spend more time together) but bad overall (I completely undermined Will’s independence which is NOT cool). Of course, there are things Will needs my help with – but it’s not fair for me to choose what those things are and what they aren’t. Although I didn’t know Will before his accident, I do know he was someone who liked to do things for himself and was (pretty much still is) very resourceful and handy. I still mess this up sometimes (it is human nature to want to help others), but it’s important to have a conversation with your loved one (partner, friend, whoever) about where the line is between helping too much and not helping enough. This conversation is so important as the line is going to look different for each and every person.

Like any relationship (able-bodied or not), we experienced new challenges when beginning to live together. To make it even harder for ourselves, we moved in together during the COVID-19 pandemic which added an additional layer of challenges. We weren’t doing a typical move in… we spent 24/7 with one another and really didn’t have the opportunity to see or communicate with other people. In the end, we’ve grown closer and it’s given us the opportunity to know what it’s like to live together. I just started my PhD and we wouldn’t have had this opportunity to learn what it’s like to live together for another 4 years. I’ve summarized the biggest lessons I’ve learned over the past 5 months of a) living with my significant other and b) living with a quadriplegic.

1) Be Ready for Change.

I can guarantee that your schedule is already not the same/nowhere near the same as someone with a SCI. Certain everyday tasks like using the washroom, showering, and dressing will take much longer for a quadriplegic. If you’re both aiming to get to an appointment at 9:00am – make sure you’re an early bird or change your appointment time. You can be optimistic, but your days of rolling out of bed and leaving to go somewhere are likely over. One thing I’ve found that’s helped me embrace this change is to get a head-start on your to-do list for the day (can you tell I have a Type A personality?). For someone like me who’s quite task-oriented, it allows me to continue feeling productive, and gives me more free time to do things with Will when he is ready to go about his day.

2) Establish a Relationship with Care-Aids. 

Bold, underline, highlight this point x1000! This is SO IMPORTANT (particularly if you are dating a quadriplegic as they will likely have a care-aid/someone to come in for daily care). This was something I was having trouble with when I first moved in with Will, and was probably the most complicated thing we’ve experienced thus far. If you’re moving in with your partner and they already have a well-established relationship with a care aid, take the time to build rapport, become familiar with their current routine, and ensure the lines between care-aid and partner are not blurred. I’ll give an example – say Will’s care aid was helping him prepare his breakfast at the same time I was finishing up my own breakfast. If I have to run to a meeting and don’t have time to clean my dishes at that moment, it’d be good for me to say something like “Sorry, I can’t get to this now. I will get to it later.”.. showing you don’t expect the care-aid to do them for you. If they happen to help you with a task (like if they’re doing something anyways and offer to help you with doing the same task), always be super appreciative and thankful. However, remember this relationship must be reciprocal and your partner’s care-aid needs to respect you and your role as a partner. Experiencing this type of disrespect can really throw a wrench in things and make you feel uncomfortable in a space you’re supposed to be calling “home”. Remember, your role is partner and think about what that truly entails. If you are experiencing disrespect, chat with your partner about it sooner rather than later. If your partner is starting up with a new care-aid, use this opportunity to build rapport at the beginning. Be upfront about roles and expectations and ensure everyone is comfortable with the arrangement. 

It’s only been a year, and I’m sure there’s many more experiences for Will and I to have and many more lessons to be learned. My biggest takeaway from this post is that being in an inter-abled relationship will come with a unique set of personal challenges, but at the end of the day it’s about your partner and how they make you feel. I hope that sharing some of these challenges and lessons learned will ease the minds of anyone questioning whether or not to pursue an inter-abled relationship; and simply show people that the challenges experienced aren’t completely different from those during any other relationship! 

Pushing on…

Emily

6 Comments

  • Barbara Vannasdale

    Hi! I was reading your story and wanted to drop you a little note. See, I’ve never known my fiance out of his chair either. When I met him a year-and-a-half ago he was 19 years into his life is a quad. He is a C5 C6 complete quad and has been that way since he was 19 years old. So I knew the situation going in and although my dad’s paralysis is for different reasons, he was still completely dependent on me and our family for the last 8 years. He has Parkinson’s disease and it’s very progressed. So I wasn’t a stranger to the challenges and difficulties of being a caregiver for someone you love. Although I shared the responsibility of my dad with my mom she still worked full-time up until her death two and a half years ago so I was with my Dad a lot. When she was sent home and told that there was nothing else they could do she chose to put my dad in a nursing home because she didn’t want to pass away and have that burden completely fall on me and I took care of her which she had become wheelchair-bound and needed constant and total Care the last 29 days of her life. I’m not sure how I would have done both of them but I would have managed because they were my parents but my mom wanted to do it that way so I respected her wishes. So when I met Jason I just fell so completely in love with him and his attitude is so amazing and he rarely has a bad day. He’s taught me so much about living life for what it is and not wishing it was something else and how important it is to be thankful for the smallest of things even when you have all the reasons in the world to complain or to be cynical. He’s a shining example of what it’s like to truly humble yourself and find Joy in being alive. I just love that about him! I tend to be more of a logical prepared thinker and planner and I know he’s never really had somebody like that in his life but he knows that I just want the best for him and I want his quality-of-life to be everything that he deserves and it to be whatever he wants it to be because he deserves it! We are all miracles in some way for some reason and it’s our choice to be that’s shining example of overcoming or surviving something that others can relate to. Because we all have something in our past that when it took place it changed us forever. It’s just that some of us wear that change on the inside while others like Jason and your husband wear their changes for the world to see! I know becoming Jason’s full-time caregiver gave me an even greater respect and admiration for my mother and everything she did for my dad! I wish she was alive so I could tell her that. This last year there’s been so many times where I’ve gone to pick up the phone to call her to tell her things that I’ve had to go through or do with Jason that I remember her doing with my dad and then I remember she’s not there. It’s been hard to go through things alone when I really needed a hand to hold or a shoulder to lean on as Jason has faced numerous medical challenges this last year! My poor hunny has had to have two surgeries in the last six months because of a pressure sore that won’t heal on his elbow and the first surgery failed and it was a complete mess and he developed MRSA and a second surgery was an emergent one and he nearly lost his arm. Now it’s pretty much healed but he’s lost so much muscle mass in his arm and pretty much all the functionality that he had. So now on top of our day-to-day stuff I have developed a physical therapy workout routine that we do together. Jason teases that he had it planned out to make me fall in love with him so he would have the good doctor for the rest of his life. He jokes like that because Once Upon a Time , what seems like a million years ago , I was a military doctor. I served in the army as a medic and field trauma surgeon. My dad was a Gunner in the army during Vietnam and later went on to get his Nursing degree which turned into him becoming a nurse practitioner after he was discharged because he wanted to be a part of helping all the soldiers coming home that needed Medical treatment for whatever reason. Because of the Parkinson’s he barely has any short-term memory left and it’s gotten worse since my mom passed away. He doesn’t even really know me anymore. When I see him it takes at least 2 in hours for him to recognize that I might be somebody he knows but once he does he just goes on and on about how he’s so proud of me and my choices. It’s pretty great to see the two of them together, Jason and my dad. sometimes I think that he remembers Jason before me LOL and I think that’s because he sees himself in Jason. It was funny because he told me that not long after I had started bringing Jason with me to visit him that on one particular visit he woke up from a nap and he was sitting up in his wheelchair and he opened his eyes and Jason was facing him in his wheelchair and Jason had also fallen asleep, I had left the room to go to the cafeteria, and my dad said he woke up and he thought that he was seeing a younger him. That somehow his past self and his current self were there together. I don’t know if it was his medication or just the Parkinson’s and his memory confusing him but it was funny. And he was so serious when he was telling me. I couldn’t help but laugh thinking it was like some weird version of Back to the Future or something. I’m really blessed that he loves Jason. He has joked though that his daughter took the whole choosing to marry a man exactly like her father a little too literally. I just have to shake my head at him sometimes! The way they bond is so great though. It’s funny you know how normal guys will talk about their vehicles and how their trucks Compare to the other guys? Well my dad and Jason do that with their equipment lol. So my dad doesn’t use a motorized wheelchair he always had a manual one which he can’t push himself anymore but you know he has never had a motorize one and Jason has had a motorized one for about the last ten years I think and my Dad gives him such a hard time. I said yeah yeah Dad I know when you were first confined to your chair you had to push yourself uphill both ways in a snow storm to go back and forth to the doctor and to get groceries right? He just laughs at me. He has such a great sense of humor still and even with his great amount of memory loss he still finds ways to let me know he’s still in there. And that I am loved. Anyway I’ll stop writing this Harry Potter length book LOL and send off this comment to you. I just wanted to let you know that I can relate to your story and to share a little but of mine! I admire your choices and the love that you share with your hubby! I know for me I need Jason far more than he needs me! I may be his wife and caregiver but he is my reason for being. His love has healed so much brokenness in me and everyday I want to be a better woman because of the kind of man he’s shown me he is! He’s my reason for being and I intend to give him all I’ve got for as long as the good Lord sees fit to keep me here in this crazy thing we call life! Please feel free to write back. A good support system can only become better by building off of the strength we find when leaning on each other!

    Much respect&love-
    Barbara V.

    • Samantha

      Thank you so much for sharing a bit of your story, Barbara! It sounds like you have found where you are supposed to be in life and embraced it wholeheartedly. Thanks for taking the time to read and comment!

  • Emily Progin

    Awesome – there were a lot of tips here that surprised me, and overall just a really great reminder of some of the quirks and benefits of a meaningful relationship with someone who happens to use a chair.

  • Ainslie

    I really enjoyed reading this. My partner and I have been together for just over 2 years now and he has cerebral palsy. I can relate to the leaving “on time” it was something I had never considered before meeting him. He has a great group of home care professionals who are absolutely wonderful and were over the moon for him when we met. Though I am currently in trouble with one of them as I haven’t baked any treats in weeks 🤣

Leave a Reply

Your email address will not be published. Required fields are marked *