About a year ago, I got married and my relationship with caregiving changed. I have always been a caregiver to some extent, but since Jay and I were married, we became companions, caregivers for one another. This is because unlike most couples, we are both living with multiple sclerosis.
Our caregiving relationship of course impacts our relationship. It’s difficult to see your spouse in pain or not doing well. And it’s difficult for each of us to see beyond our own pain at times. I know that when I am not well, I find it hard to smile, I find it hard to talk, I find it hard to be friendly and kind to people.
My MS was crueler to me in my adolescence than it is in my adult life; fatigue, pain and weakness still bother me, but I live well and my issues with mobility are nearly imperceptible to others. The amount of extra effort I put in every day isn’t something everyone can see. But the same is not true for Jay. Jay’s MS is what I would describe as “very crazy.” It is unpredictable, and he was diagnosed later in life than I. He is still getting in touch with his “new” body, his body impacted by MS.
Unfortunately, Jay’s MS has left tangible physical marks. He has to walk with a cane, or use a wheelchair for long distances. Movements that require fine motor skills or balance are difficult for him to do alone. That’s where I come in – as what I call a “cared” caregiver, a caregiver who is cared for herself. This has not been easy.
Taking care of someone you love can be painful. I’m not going to avoid the subject and just talk about how rewarding it is to be useful. I want to talk about how it feels useless to see the suffering, to know how the other person feels and do absolutely nothing but stay together. I see Jay experiencing the same symptoms I did in my youth, and feel powerless to help him.
You must be thinking – what a horrible life, huh Bruna? My answer to that is no, no, no! With Jay and me, we have love and that is enough. Someone once told me, “You don’t have to go through all this, when you already have your own illness to take care of.” And that’s true. I didn’t need anyone to take care of — I needed someone to love and to be loved by. That is what I found.
Taking care of each other is something that every couple should do. We have already started a relationship with routine care. Maybe for a couple who has never taken care of each other, it may be strange to start doing something that should always have been a routine. We care for each other because we need aid and because of that we have a unique intimacy. Only we know how good it feels to “share a fatigue” or know what it’s like to begin describing a strange feeling and have the other person finish your sentence. And when I help my husband put on his shoe or cut his steak and someone says: how spoiled! I say to myself and (sometimes aloud), “Someone did all of this for me once, so it is a privilege and a pleasure to do it for the one I love.”
Interested in seeing the Portuguese version of Living Like You (Vivendo como você)? Visit: http://esclerosemultipla.novartis.com.br/vivendo-como-voce/ for more great content.