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?
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”.
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?
Sam & Chelsea