For better, or worse, for richer, or poorer, in sickness and in health, until death do us part. Pretty standard, pretty straight forward. A promise made between two people who are going to stick it out through thick and thin. But what happens when one aspect of those simple vows becomes a very real every day struggle; when someones health becomes a constant cause of worry, stress, financial drain, relationship issues? Or when “until death do us part” looms a little too close for comfort?
Cancer, heart disease and stroke are the three top causes of death in Canada. Add in an SCI and you now have an entirely new list of complications, like pneumonia because someone with an SCI has a difficult time coughing to clear their airway, or blood infections from pressure sores, or renal failure caused by one too many UTI’s. Statistically speaking, people with a spinal cord injury have a shorter life expectancy than the average population. Then, take it a step further and remember that our men are young and enjoy being active, playing sports and sometimes just doing dumb boy stuff. The list of things that could easily put us into our nursing home days has now tripled. So how do you deal with the fact that some of these issues are imminent? How can we support a loved one in the hospital and how can we control our fears and concerns?
CHELSEA SAYS…
I believe that in every relationship there are fears or concerns for the future. Not everything, all the time, can be flowers and roses, despite our wishful thinking. Discussions have arisen about health issues and how to get through them when being involved with someone in a wheelchair…here are my thoughts.
I realize that being concerned about the future is as productive as eating chicken wings but you can’t help a mind from wondering. Yes, at some point in time our partners and ourselves are all going to have health issues. It’s an inevitable truth, so why should dating someone in a wheelchair make this worry more of a concern? I think what makes a health issue more scary for someone with a SCI is that THAT issue may alter your lifestyle completely or for a long period of time.
Bladder Infections, blood infections, a broken bone gone undetected, pressure sores (PRESSURE SORES!), a cut in a toe, bad shoulders, bowel obstructions…..just to name a few. Any of these health issues can lead to a long hospital stay or life change for both of us. I can sit here and tell you these things don’t worry me but of course I would be lying. James has had two shoulder surgeries and is in constant pain. He does everything he can to make sure his shoulders don’t get worse, but I fear as he gets older our life could and will change. What happens when he is in too much pain to wheel? What happens when he can no longer transfer to the bed, to the toilet or the van? He tells me often “People always think I would like to walk again, but I wish someone could just fix my damn shoulder!”
A few months into our relationship James had a bowel obstruction that resulted in a week stay at the hospital. I am not a nurse nor have I had a lot of experience with hospitals or health issues. Needless to say I was scared shitless that James was, well….shitless! At one point, I remember saying to myself “I don’t think I can do this”. He must have sensed my anxiety and I remember him clearly saying “If this is too much, I won’t hold it against you if you want to leave”. This was a big moment for me because I actually had to step back and consider this.
This was the moment when I realized I really loved this man and I CAN do this.
In retrospect that health issue made our relationship stronger. Shit is going to happen in our life (or in this case, not happen) there is no doubt about it, however it is how we REACT to these situations that is the real test.
I don’t have a lot of experience yet with James and concerning health issues, not to say that one day down the road that could happen. With past events that HAVE happened to me I can offer this advice:
-Have very open & truthful discussions with your loved one.
-If your loved one is in the hospital and you are finding yourself overwhelmed, please know it is ok to feel this way and you are not alone.
-We say it A LOT in this blog, but humor is your best friend. When James was in the hospital I bought toy foam guns and we shot targets on the wall and sometimes doctors. It is amazing what solace a little humor can provide.
-Finally, remember, “this too shall pass”. Learn from these experiences. What have you learned about each other? What have you learned about the situation? This is a temporary season in your life.
I’ll leave you with a quote that has really helped our friend Scotty: “Life is 10% what happens to you and 90% how you react to it”.
SAM SAYS…
I work in a long-term care facility and see the effects of aging on a daily basis. Somedays, the idea of getting old scares me. I know everyone grows old, I understand the whole circle of life theory; that there are stages, there’s a normal life cycle and everyone ends up at the same place. But things can change so quickly. You can be as healthy as you’ve ever been, and then, all of a sudden, you aren’t. Chronic disease, stroke, cancer; a million things that can go wrong and bring that inevitable final stage of life rushing up to greet us. I understand that one day, I will be in a position where I will need help to do even the most basic of tasks; or that I’ll be that wife, who comes to the care home to spend her days with her husband who she could no longer take care of herself… and that’s the part that scares me.
Thankfully, up to this point, Shawn and I have actually been really lucky. The biggest health issues that we have had to face are repeated UTI’s, a broken foot, and a nasty month-long stomach bug (for James and Chels, shit didn’t happen, but for us it definitely did… a lot); in the grand scheme of things, all pretty minor. But I worry about him and about what our future is going to be like, way more than I would if he wasn’t in a wheelchair. I worry that one day one of his sports is going to cause an injury that he won’t be able to recover quickly from; waterskiing alone has caused a broken nose, a broken tailbone, a broken foot, two broken femurs and a broken back, and those are just people we know. I worry that the constant UTI’s and bladder strain are going to end up in bladder cancer. I worry that his shoes are too tight and the red mark on his heel is going to turn into a pressure sore. I worry that he’s going to blow out a shoulder climbing into his truck and need more care than what I can provide.
I’m terrified that with his life expectancy only being 63-69 years, I’m going to have to spend my golden years without him.
It was only a couple of months ago, after a water ski camp, that I actually told Shawn how much these things worried me. A quadriplegic friend had ended up in hospital with a broken back and I was not okay with that. Call me selfish, but I told Shawn that I didn’t want him to water ski anymore… and I instantly felt better. We talked about all of my fears and although he probably won’t listen to me and he’ll ski again next summer, I know he will think twice, not just about waterskiing, but about any decision that may affect his health and our future.
In the end, if you’re a worrier, you’re going to worry and there is no amount of reassurance that is going to stop you. But talk about it anyways, it lightens the load. Understanding can only strengthen a relationship, so let your partner try to understand where you are coming from. And talk to other people because I guarantee you that you are not alone in how you are feeling. Health complications are scary and it’s ok to be scared, but remember that no one can predict the future. Take things as they come, roll with the punches, keep an open mind and dialogue throughout all of it. Worry, if that’s what you do, but don’t let that worry or that fear ruin your right now.
So we have a choice to make, we can be flooded with worry or we can choose to live our life in the present moment. Everyone is faced with this problem not just us. To worry about our future is a natural struggle we all deal with on a daily basis. You can let it control you or you can control it. Personally, we choose love and whatever comes with it! Now, it’s your turn to give us some Wheel Love advice! How did you and your loved one get through a health issue?
Pushing on…
Sam & Chelsea
Great post
When I first met my husband he was still able to walk, ride his motorcycle, drive, and work. I knew he had MS, but that never stopped me from seeing the amazing man I was with. Slowly, he started to walk with a cane, got tired easily, and sometimes lost his balance. One of our first winters together, the entire family came down with the flu. It hit me pretty hard, but my husband went into a relapse. He came out of it, and then a few weeks later had a minor motorcycle accident. On Valentines Day!! He was ok, but hurt his leg pretty badly. That sent him into another, and longer, relapse. He soon was unable to work and had to use a manual wheelchair to get around. No more driving, no more motorcycle, no more walks. It was frustrating for both of us. About three years ago we (FINALLY) got a power chair. Alot of our freedom has been restored as we are able to go out anywhere and everywhere. Through all of this I have had people say to me that I should leave him. That I deserve to have a life and not be “tied down”. How hurtful!! I have heard all sorts of rude, unnecessary comments and ‘advice’. I have been with this man for over 11 years, and we have been through all sorts of hell and back, several times. I would never leave him! Not only am I his wife and best friend, I am his care giver. There will come a time when I will need help with caring for him, and that will be heartbreaking and very difficult. Reading this I realize how many “I’s” there are! This journey is definitely as a team. He takes fantastic care of me too! My advice for anyone on this journey….take it one day at a time. Seek out others with similar situations. Dont be afraid to ask for help. 🙂
Hey guys,
I must admit your blog entry made me get really emotional.
I’ve been dating my quadriplegic (C4 complete) boyfriend for one and a half years now. Before we started dating and in the beginning of our relationship I would worry a lot about health issues and life expectancy. Luckily, we’ve only had to deal with one rather minor issue that was over real quick and otherwise he’s very healthy in general, so over time I seem to have “forgotten” about the health issues that can come with an SCI. I have never taken my boyfriend’s health for granted, but your post made me realize again that it could be and it will at some point get a lot worse. This really scares the hell out of me and when I’m feeling this way again, I will talk to him, just as you suggested. All I know is I want to be there for him when the day comes and I’ll make him happy and give him strength with just being by his side and giving him my love.
I could write so much more on this, but I’ll leave it at that.
Your blog is great. Thank you for that.
xoxo
Thank you so much for your kind words, Lisa! It’s easy to forget about things like that when everything is good, but when it does come up it is SO important to be able to talk through it. Thanks for taking the time to read and comment! Much love
It is amazing how a SCI can test a marriage.
But it can strengthen a marriage also.There
Is nothing better to test a marrage than spending24/7
Together.You literally get all the s#%* on the table!
36 years together today,and I’ve learned more in the last
7 months since our accident than the previous 35 years.
You guys really have great insight and I love reading your articles. I don’t have an SCI but I have been in a wheelchair my whole life(underdeveloped leg muscles and joints). I am a young woman in my early 20’s and I’ve always been afraid to let a man in my life because I never thought it was fair for me to put all my physical problems on someone else. Well, there is this guy that is completely astounding and he has shown a bit of interest in me in a more than friends way even though currently we are just friends and we just hang out. He is remarkably perfect in every way and I find myself falling for him more and more each day. I really enjoy your articles because they are honest and have a certain realness to them that you don’t always get from blogs. You can tell that you are very much in love with your husbands and that a little SCI isn’t gonna stop you. Your articles have shown me that just because you are in wheelchair bound doesn’t mean that you don’t deserve to be loved completely. They have given me a hope that I didn’t know I needed.
Thank you,
Rebekka
Wow, Rebekka! Thank you so much for your kind words! It makes us so incredibly happy to hear that you have a newfound faith in yourself and your ability to be loved. We are firm believers that taking the risk is well worth it, whether it works out or not. We hope that you “jump” in head first (so to speak) and that you get nothing but the love you deserve! Much love!
Unfortunately, my wife chose to leave me after my spinal cord injury. I know it was an extremely difficult decision that she struggled with, however, ultimately decided it was something she needed to do. I also know that hundreds of other individuals will be forced to have to confront the same gut wrenching scenario every year.
While I don’t blame my wife for choosing to leave, I do struggle with how quickly she decided it was the best thing to do, after having only given the situation 6 months. As anyone living with, or affected by a SCI knows, it is a long road to recovery and can sometimes take years before an individual even remotely begins to feel like him or herself again.
Speaking from experience, my advice to anyone who may find themselves in the same situation, is to give an important decision like this, the proper time needed to truly understand the situation.
I am in a completely different place today then I was all those years ago when my wife made her decision. Who knows how things would have turned out, but I do know that they have so far turned out much better than she ever would have envisioned.
You are so right, Scott! It is a long road to feeling like yourself again and we are so sorry to hear that she didn’t get to learn that. Unfortunately, some people are stronger than others. We hope you have found many incredible things and people since then, though! Much love!
Hey Scott, this may not give you solace for the quick nature of her departure, as you have already stated you’re in a far better place today… But here’s my glass half-full thoughts…. After my accident and resulting spinal cord injury I went through 11 years of blame, guilt and verbal abuse rooted in the anger and bitterness of how how I “wrecked our life” with my spinal cord injury. The associated guilt enabled me to hang on and try to make things work until a last-minute attempt at reconciliation resulted in her once again using the exact words I quoted above. It was at this point that I finally realized It was time to throw in the towel on the marriage and rediscover my self worth. So consistent with the blogs comments on needing humor… and my perpetual glass half full attitude ( even when sometimes not appropriate 😜) The six months was probably a blessing 😀😀, cheers!!
In reply to Scott but meant for all visitors here:
I must say that recently meeting a most handsome, charming gentleman who already had an SCI when we first met has been a long cherished moment in my life so far. We met online and he was upfront about his injury and quadriplegic status from an accident a few years ago. He has a different life from what he used to live, but he is just as motivated, successful and active as before. We check in with each other daily, as we are strongly drawn to each other in every way possible, whether physically, emotionally or intellectually, at least from my perspective. I’m sure he feels the same way 🙂
I would be lying if I didn’t say I feel anger toward his ex wife for pursuing her own life. Marriage is about many things, one of which is giving up a little selfishness in order to provide more happiness for both partners in the short term and in the long run. Some people are all about Number One, and will probably never be fulfilled by anyone else but themselves. I suppose she didn’t consider that when her husband almost died and gave up his independence in an instant, it was as important as giving up hers.
I have been with a fully able-bodied man for over 25 years, but we are disabled by his fears of people, self-doubt, self-induced stress and bouts of unfounded anger and grudges. He can be happy, but his weekly dark moods over the years make him less desirable to me over the past few years, and have nearly spent all my patience and empathy. Again, selfishness on his behalf has prevailed.
Let me say to visitors here that attraction to someone with some physical inability does not limit their capabilities elsewhere. In fact, it gives them an inside advantage over those of us who don’t have a clue about their situation. The man I met recently and hope to know even better for a long, long time is already one of my favorite people, a positive influence with a beautiful soul.
We are just over 2 months of dealing with Tylers broken leg, subsequent hematoma surgery, another surgery to clean an infection, then the weeks upon weeks of IV antibiotics with still an uncertainty of whether or not he’s healing properly just yet. But I am finally able to breath a little bit and not come as close to tears when I worry. He is finally feeling a bit more like himself, he has colour back to his face and his cheeky attitude has returned. Sigh. Those were pluses, I promise 😉 Anyway, it is downright scary when you think about the mortality of the person you love, when you are faced with it unexpectedly no matter what that situation. I know that life can come abruptly to an end for anyone, without warning. That illness can blindside you. I know that health issues are wide and varied and can strike anyone at any time of life. However, when you are with someone with an SCI, it is a kind of expected thing, like Chelsea and Sam have pointed out, whether its a UTI, pressure sore and the infections that can accompany it, or unnoticed broken appendages! Living and loving someone with and SCI comes with the certainty that there will be some issues along the way. That’s the difference I think. I am a strong person. But when it comes to those I love I feel as thin as tracing paper. It would take just a slight breeze to tear a hole through me. This is where my fear lies. What if. Facing these challenges and not catastrophizing them, thinking about where they could take you, is difficult. Not allowing your concern and worry blow out of proportion, knowing the kinds of ways things could easily go. And don’t even get me started on the life expectancy thing. He’s just not allowed to adhere to the statistics. He, like in every other aspect of this beautiful mans life, will exceed this expectation!!
Yours and Tyler’s last 2 months have been hellish, that’s for sure! But theres nothing like going through hell together to make you stronger, both individually and as a couple. You guys are both amazing! We love you! Keep on healing, Tyler!!
“When it comes to those I love I feel as thin as tracing paper…” Chills. I’ve never read it so perfectly put before. I also love someone with SCI. Sometimes at night the most horrible scenarios swirl through my mind. When it happens, I just hold Jason extra tight, and vow to make our time together as fulfilling as possible.
Thanks for sharing, you two !! It’s never easy when our partners and friends end up in the hospital unexpectedly. When Randy was experiencing disruptive heart and digestive problems along with a UTI this spring, it was the scariest 2 weeks of my life with him and his longest hospital stay I’ve experienced with him. It was made so much easier when the doctors and staff at KGH were so kind and treated us both with such kindness that it softened the worry somewhat. You and many of our other friends sent supportive texts and when he was able to, Randy accepted a couple visitors. Symba even became a regularly approved visitor when Randy mentioned how much he missed his service dog.
Healthcare professionals can make the biggest difference in the world. I remember when I first met Randy and he had a UTI in Calgary hospital and he was feeling so low and cold and shaky, that I decided to lay down beside him to give him a hug. The nurse came in and scolded me/us “This is not a Hotel !” Geez ! I was on top the blankets comforting someone who feels nothing from his armpits down and you think that’s disrespectful ??!! Anyway, that was a totally different day and maybe she was having a bad day. It won’t stop me.
We retained the most humorous part of that experience and now we affectionately refer to any of his scares like this with … ‘Better be careful or you’ll end up at “The Hotel” ‘. It helps remind Randy to drink more water in a funny kinda way 🙂
Haha! Love that, “the hotel” lol! We are so glad that Randy is better now! Love you both!
Worst case scenario for surgery, 1 or both legs amputated or death. Hubby wakes us and first thing out of mouth “How many legs do I have”. I have sat an waited thru 16 surgeries all by myself. We did it all together with no money and still broke today. What I would not do for a place with two bathrooms. Not much to ask for in life. At first we had what we called adult conversations. Now they are part of our daily life along with asking him to take the whole bottle of warfarin instead of just one to make life easier. A sense of humour is the only free thing in life and if you ain’t got it, get it now and hold on tight. It is the only thing that gets you thru the tough shit. Eventually both legs did get amputated. After the first one my question to him was “So what are we going to call this thing, a leg just did not seem to cover it.” Wanna be middle leg was an option. It is that sense of humour thing.
You’re right, Karen, a sense of humour is key to being able to get through those really tough times! Thanks for reading and commenting!
Thank you for a great article.. We are 18 months in with SCI in our life now. We have been married for 14 years and i can relate to every part of your perspective. We too have chosen to live a full and active life with our 2 young kids, but the constant worry about all of his health related issues and a short life expectancy is not something you can easily shelve, but we have to live today… Our kids won’t let it be any other way! They raise the bar everyday. My man told me to leave too, but I wouldn’t be anywhere else… It’s an honour to live to my vows.. He would do it for me..
Thanks again
It’s so nice to hear that your kids help keep you guys in the moment, Cassy! The wisdom of a child is an amazing thing. Thanks for taking the time to read and comment! Much love!
I love you guys you just get it right on. I to worry about all these issues even though my quad son is not part of our life right now. Once a Mom always a Mom I say and in doing research have become aware of all these issues that SCI patients face. I worry all the time and worry he will get sick and die before I see him again. Life does not always turn out how you plan . Thanks again.
Thanks again for commenting, Teri! We really hope you get in contact with him in the near future. Best wishes and much love!