Caregiver, Chronic Illness, chronic pain conditions, invisible illness, Muscular Dystrophy

Caregiver’s thoughts

Anyone can hide. Facing up to things, working through them, that’s what makes you strong.” ― Sarah Dessen

As far as I can remember I haven’t seen my mother walk normally. Something I believed I’d see very soon every time we opted a new treatment. It’s been 20 years now and the hope still remains with a hint of reality check, of course.

As I write this I can feel my throat aching. What has happened to my mother is unfair. I’m sure it’s a common opinion out there. All about life giving us lemons and we have to make lemonade out of it. Easier said than done. Isn’t it? But you have no choice; you might as well make the lemonade.

My mother a house wife is the strongest person I know. If only, I could inherit just half as much will power as hers, I’d be sorted for life. She is suffering from Limb-Girdle Muscular Dystrophy. Her legs have been weakening for quite some time now. She knows, we know there’ll be a time she will completely lose her ability to walk, but it doesn’t just stop there. Her hands were completely fine until recently, gradually as we notice helplessly, that is weakening too.

Something as little, as mundane as plaiting your own hair, lifting kitchen utensils without dropping it or rolling chapattis is getting difficult day by day, for a person who has been independent all her life. It’s cruel. She doesn’t even discuss most of this inconvenience (on such personal level) most of the time.

So many inconveniences, yet she manages all the work at home. No complains ever. In fact she pampers us. There is hardly a time she asks for help. And no, she doesn’t use wheelchair yet. She fears she’ll get used to the help. When we aren’t around it gets more difficult for her to cope up.

“Anyone can give up; it is the easiest thing in the world to do. But to hold it together when everyone would expect you to fall apart, now that is true strength.” ― Chris Bradford

My father was a successful business man. Naturally with business comes a lot of travelling and a busy schedule. With me and my sister gone to school my mother would have had to be alone for quite a lot of time during the day. We fear that we might come back to the house with the sight of her fallen on the ground, not able to pick herself up. What if she hurts her head or fractures her bones. Mother, you don’t know but we fear because we care, we fear because we love you.

With this in mind my father gradually quit business. A well established business, our bread and butter. (We meanwhile found other means of income) My father dedicated himself to help my mother and to always be available for us. We are two girls and he has been with us through shopping groceries, our inner wear, sanitary pads and so on. Most men might usually be inconvenient running these errands. He did it and he wasn’t ashamed of it.

There are times as daughters we need our mother, to guide us into adolescence and through adulthood. I wished she was able to be more involved, we could go shopping together, and maybe she could help me choose my first bra, because I was practically clueless. I hadn’t seen the feminine side of me until I was in the hostel and I saw other girls getting all dolled up. And no matter how much a father does, a mother’s touch is beyond compare.

“Life will break you. Nobody can protect you from that, and living alone won’t either, for solitude will also break you with its yearning. You have to love. You have to feel. It is the reason you are here on earth. You are here to risk your heart. You are here to be swallowed up. And when it happens that you are broken, or betrayed, or left, or hurt, or death brushes near, let yourself sit by an apple tree and listen to the apples falling all around you in heaps, wasting their sweetness. Tell yourself you tasted as many as you could.” ― Louise Erdrich

When we left to the hostel to complete our education, it was my father who was there for her. He made it easy for us, at every step of our lives. Empathy is a word most people fail to understand. It is the ability to understand and share other’s feelings. Empathize with the victim, never treat them like they are special, and don’t keep reminding them of their disability. They dread to be treated normally. They need help of course, minus the ‘pity’.

Image Source: Midwest Compassion Center

When I give her massages is when we have heartfelt conversations. That is when she explains herself and the challenges she goes through every day and I try to understand the same. Only the victim wholly knows what they are going through, your family can only try to understand. But the important thing is they want to. They want to understand and oblige, be there for you physically and morally. Give them a chance to.

I am able to write this article only because my mother explained herself. Things are quite easy for the entire family. We might never know what exactly she goes through every day of her life, but to a great extent we do understand.When I give her massages I playfully start tickling her and she laughs so hard that her belly wiggles. I’d have done this irrespective of her condition. It is a normal mother-daughter moment.

Now that her fingers are becoming all weird and bendy, little activities like holding a glass of water or making balls of gulaab jamoon makes her hand look weird. My heart aches looking at it, but on the outside nonchalantly I imitate her and she finds it really funny and laughs.

Doesn’t she feel bad? Of course not. Such is our understanding. Don’t you fool around with friends? Do they feel bad? No I’d hope. She is my mother, my friend.

Why I am narrating these little incidents? Because when you concentrate on the little things in life it has a greater impact.

This is what I mean by treating them normally. Little things matter. All of us should take a step each towards being happy.

“Life is filled with unanswered questions, but it is the courage to seek those answers that continues to give meaning to life. You can spend your life wallowing in despair, wondering why you were the one who was led towards the road strewn with pain, or you can be grateful that you are strong enough to survive it.” ― J.D. Stroube

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