I, at least to my knowledge, am physically healthy. My husband Dion is not. 17 years ago he was diagnosed with Multiple Sclerosis, known commonly and simply as MS.
I remember the day that Dion was struck with the first symptom: his whole side went numb. At that time we were engaged to be married. I watched him go through a battery of tests only to be told, “it could be one of two things: MS or a pinched nerve”. I desperately wanted it to be the latter.
Since Dion’s diagnosis we have endeavoured to not allow MS define him or us, though it has been an unwelcome piece of our entire marriage. The reality is that it has left and continues to create an indelible mark. Dion cannot run around the park with our daughter Cate. We cannot go for walks. Dion faces severe fatigue. We are likely needing to install a stair lift sooner rather than later in order to remain comfortably in our house- the only house Cate has ever known. Things that most of us take for granted, like putting on our own socks without getting exhausted, are the norm for Dion.
People look at Dion and can get that his body is facing limitations. He has been increasingly open and transparent about what this disease has taken from him. In the process we have also learned how to better communicate through this as a couple. Dion often says that MS is actually our disease. In many ways he is right, except that I can still feel my body.
I have no idea why Dion has MS and I don’t. I hate being able to do things that he can’t. I struggle with balancing the weight of my responsibility for Dion, Cate, our home and my work. I want to do it all well and then I get overwhelmed. I desire to help Dion in the ways he needs it and give him the space to do what he can still manage and sometimes I get wrong which is which. So often people tell me I look and act so strong, which is lovely, except that it masks my need for help and the amount of sorrow I carry. I need people to pray for Dion. And I need, though I am not sick, for people to pray for me.
Being the “healthy” (read: physically healthy) one has its challenges. It is difficult saying this because I fear it might sound like I am belittling what Dion is going through. I don’t. Every day I watch the person I chose to spend my life with struggle. I get to see first hand the brutality of having MS. I also get to witness how Dion is being healed in other ways through this illness. He is being transformed emotionally and spiritually and is helping me experience the same.
I would very truly switch places with Dion if I could. I long to take it all away. Even if it was for just a moment, a moment where he could chase Cate around the block or even just feel my hand in his.
2 thoughts on “When You’re Not the One Who’s Sick”
I’m Crystal. Dion is my cousin. I know exactly how you feel. My fiance was diagnosed 10 years ago. Although he’s in good shape for an MS patient, I know the sorrow of not being able to be active as a family. We also have a little girl. She’s 6 and doesn’t understand why daddy can’t run in the park like mommy can. She doesn’t understand “sickness” that isn’t accompanied by sniffles and coughs. The hardest part is the emotional roller coaster. Sometimes there’s a switch… this awful switch that turns on inside of him that makes him angry. It’s understandable. He’s frustrated that his body won’t do what he tells it to. I can’t imagine being in the head of someone who used to be so active but now can’t barely walk when he gets home from work. His energy, youth and spunk was a great source of pride for him and now he’s losing that. He used to be a long-distance cyclist. He could ride all day and was such a advocate of physical activity. He still is. On one hand I feel guilty if I go for a run, but on the other hand, if I’m feeling lazy and just want a couch day, I feel like I should be moving. What if something like this happens to me and I didn’t use my time to do all the physical things I could have? He would trade bodies with almost anybody if he could and here I am just wasting mine on the couch.
Sometimes, on a really bad day, he has difficulty just making himself a cup of coffee. I’d like to just make it for him, but I know he needs his independence. I’ve learned not to help him unless he asks for it… and if he does ask for help, he needs it-NOW! I’ve learned to make sure all paths in the house are clear. People who come over don’t understand that when I’m scurrying to pick up my daughters backpack off the floor, it’s not because it’s my wifely duty, it’s not because he’ll get angry for not having a perfect home. It’s because that simple backpack on the floor is like a bootcamp obstacle course to him. His entire life is an obstacle course. That’s the last thing he needs at home.
This entire comment sounds like I’m complaining and I don’t mean to. I chose to be with him knowing that he has this disease. I will sign off with this:
I know beyond a shadow of a doubt that everything happens for a reason, and reason is ALWAYS positive. I truly believe that without MS to slow him down, he wouldn’t have time to enjoy the quiet life of a family man. 🙂
I am a friend of Dion’s, and the husband of a woman who has has been living with Multiple Sclerosis since 1998 (at least, that’s when we got the diagnosis). This means that I too have been living with its effects for all that time as well.
Margie’s MS has been reasonably gentle. Throughout the years, occasional flare-ups have been a reminder of unpleasant possibilities and fears of immobility or other impairments arise from time to time. A cane is necessary sometimes. Fatigue is constant; incomplete projects and undone to-do lists now a fact of life. Discouragement is not unusual.
Margie’s cognitive functioning—her ability to process information and respond—is still working, but it comes with difficulty, slow and getting slower. Speaking clearly can be a chore.
Yet we have managed. Our marriage suffers strains but remains intact. For years I administered the beta-interferon injections she so detested. That came to an end a few years ago when she had just had enough. And after looking at her most recent MRI scans, her neurologist agreed that those treatments were superfluous.
So now she is mercifully medicine free (mostly) but the disease is advancing. In 2012 she became unable to carry on her part time job as a bookkeeper with a small firm. She quit.
After that we filled out a bunch of forms and met with social workers, doctors and other advisors. Eventually she learned she was approved for the CPP Disability Benefit. This was cause for celebration in our household. We also belatedly realized that she was eligible for EI benefits as well (we thought because she quit and wouldn’t be looking for more work, she didn’t have a chance). That money came close to covering our property tax last year. Provision arrives in strange and wonderful ways.
I mentioned that our marriage suffers strains but remains intact. We like to say that our relationship is not at risk, but certainly it is threatened. The way Margie always was is not the way she is or will be. Fatigue fills in the spaces where creativity used to flourish. Tasks that used to bring joy now lie undone for days. Projects begun remain unfinished. Intentions declared are frequently set aside. We are less hospitable than we used to be. We plan rest breaks.
At this stage we don’t talk as deeply or readily as at certain stages in the past. Her mind processes information differently, taking detours that are often unfollowable although her memory and acuity remain largely intact. She eats slowly to make swallowing less hazardous and urges me to slow down too. Bathroom habits and walking habits and shopping habits are all adjusting to a different pace.
This is a loss very much in process. Can anything positive come out of it? I suppose so, but the potential to “build character” (e.g. empathy and patience) is about the only good thing I can foresee, and right now that seems rather trite.
So … Margie’s MS is such an integral part of my life, an incredibly important factor in my spiritual development, a demanding reality in my domestic life that has a big impact on my ongoing professional life.
It means, among other things, that I need to be active in the labour market for years to come. It means that I am a caregiver in multiple realms. It drives me to my knees.