[OPINION] New beginnings

 

I have just started walking again.

No. This is not some dramatic story about a serious accident or illness resulting in a severe loss of mobility. Not a story about a hard struggle that ended in a magnificent triumph.

We see a lot of those stories in media. And if they are true, not faked by people who need the attention, these are admirable people. These stories are inspirational and are indeed worth sharing.

Yet the reason they are so often fabricated by the insecure and attention-hungry is precisely that – they do get attention.  Well-deserved attention that those with weak egos crave for.

But I am not talking about that sort of thing. I am talking about new beginnings that are given far less attention. The humble nature of these stories doesn’t merit space. Because it doesn’t have that “wow” factor. It doesn’t follow the formula of the inspirational story.

I thought a long while before writing this. I have no intention of behaving like a narcissist telling a story about myself that isn’t very interesting. My mother’s approach to illness was to retire to her room, deal with her awfulness and emerge only when she was again worthy of company. Illness can be boring from those not suffering and often should be a private thing. The idea that anyone else should find your illness interesting enough to read through a long rant on it, speaks much about your sense of importance.

And yet, I have decided to rip off the veil of my privacy. I will risk accusations of egotism and write this story. I write this story, my own story, because it is the story of many others who are also struggling. And, in my decades of work as a psychologist I have come to realize that many struggles are difficult not because the ascent to victory is steep. But rather, the climb is perpetual and the only victory will be when we depart this world and are able to say to ourselves, “I did my best and never gave up.”

Disability

I am a life-long asthmatic. My parents tell me I had my fist attack when I was two months old. Much of my early memories involve memories of asthma attacks. Sitting up sleepless and unable to breathe. Waking up to see my parents crushing tablets and putting the powder into capsules because when I was growing up there were no liquid formulas. They needed all sorts of tricks to get me to even swallow those capsules. Mainly my mother would put the capsule in a wedge of banana or teaspoon of apple jelly so I could swallow it. To this day I won’t eat an apple or a banana.

Until I was in Grade 5, I was the skinny, pasty-skinned and completely uncoordinated kid. What would you expect of someone who had to stay indoors a lot and would go for days without eating during her attacks? I remember my yaya yanking me away from playmates whenever the wind would come up and blow dust into the air. Sometimes her precautions worked, sometimes they did not. I missed days and days of school.

Things changed  when I was put on steroids. That controlled the asthma better. From then on, because of the effects of steroids on appetite, I became the pasty-skinned, uncoordinated, fat kid. It’s hard to have a disability.

Prejudice

Yes, disability. The deaf, mute, blind, lame. The depressed person, the person with attention deficit disorder, the person with Asperger’s syndrome, and so many others. Because we suffer from a disability people, and because society can be so judgmental of anyone who doesn’t seem to measure up – we often get treated harshly. They do call us all sorts of names or name our disability as a form of insult.

Sometimes it’s easier to deal with the outright bigots. In my case my weight does not make me invisible. So when someone says, “Ang taba mo ngayon (You’re so fat these days),” I have a series of answers including, “Ang pangit ng gupit mo.” (You have a bad haircut).

But what do I say to people who assume that I don’t get enough exercise which is why I am so big, uncoordinated, and wheeze when climbing the shortest flight of stairs? Challenge them to the swimming pool? Those who know understand that asthmatics are made to swim to strengthen their lungs. And I have swum all my life. I have a lapping pool at home.  In between other forms of exercise like running or lifting weights or functional fitness classes, I swim. I am good at swimming. I shift to other exercises because when I reach the point of doing so many laps, I get bored.

During the asthma-free periods I get better at whatever type of exercise I am doing. I also lose a little weight. But when I have a bad attack and I have to go back on steroids, I get knocked down for some time. “Some time” depends on the severity of the asthma and also on my increasing age. Lately it takes so much longer to recover and so much longer to get back to exercise.

A year ago I got hospitalized (again). My body had decided to throw me a new curve ball. My severe asthma brought heart palpitations. I stopped the really strenuous exercise program I was doing. I was on high-dose steroids yet again. I gained weight and because I was sedentary, gained more weight, and because I was so heavy, had more attacks.

After months of depression over my (not) new-found state of ill health, I began walking again. The first time I walked, I thought I would die. It was miserable. Slowly, I became more comfortable. Over several weeks, I began to walk a little farther each day. I reached the point where I could tire out a one-year-old.

But the asthma has leveled up now. So it seems like every time I gain a little, it comes roaring back. Like others, my disability has become so much a part of me already that I look at it as a sparring partner. We are in our 100^th round and it is getting stronger. Silly sparring partner, doesn’t realize that when it finally knocks me out it will pass too.

Silver lining

Yet I am not ungrateful for my disability. It has taught me many things. Pluck, hard-headedness, determination. These things are not difficult when you need to muster them to function. Sensitivity, empathy, and compassion. Again, not difficult when you know how precious it is to be at the receiving end.

My being alone has never been a problem. I have spent so many days in my sick bed alone. I discovered books and music this way. Books and music have kept me happy through the hardest of times.

My disability has led me to a new academic field called “fat studies” and a new social movement, “the body acceptance” movement. It has led me to understand that all our prejudices about fat people are just that – prejudices. It has also made it so easy for me to grasp with my heart what the call for more enabling environments means.

My disability has led me to learn to accept how life can be arbitrary. There are many things I can be grateful for and there are many things I have to just accept and overcome.

It has led me to understand how each one suffering a disability is dealing with his or her own personal world of small and temporary triumphs over a foe that will not be defeated. And yet, those of us who survive do so because we laugh in the enemy’s face and laugh at our fate. Or perhaps, even better, we laugh along with whoever or whatever brought us our fate.

It has also led me to this point where I have decided to open up about my own personal struggles because, while we are all so unique, we are also so much the same. There are more of us who are disabled in ways we may not be able to overcome. Many of the blind, the mute, and the deaf will never be able to find a “cure”. I have come to realize, too, that many of them don’t want to be cured. They, like me, have accepted things and wish only for a world that is more enabling. And we shall fight for that world.

Never give up

I have begun walking again. Not dramatic. I have made the decision to try so many times before. And just because it gets more and more tempting to quit, doesn’t make the decision to fight any more dramatic. And for those who are out there who are wondering for themselves whether they should try or just quit, try!

Do not be disheartened. Never give up. Maybe there is no happy ending for folks like us. We will struggle all our life. We can only hope it gets easier but maybe it won’t. Yet the best quests are like that. Continuous and interminable, but not without its triumphs, no matter how temporary.

But here is the trick, life is still worth living. I mean, really. Admit it. You have had fine times too – you and your disability. We may never be called “normal”, but for me, normal would be boring. – Rappler.com

 

Sylvia Estrada Claudio is a doctor of medicine who also holds a PhD in psychology. She wrote this on Easter Sunday when she joined all her Christian friends in contemplation of new beginnings.