Prajakta Samant and Amit Patil

Saga of a CHAIR 
Prajakta Samant and Amit Patil  

When we hear a word “chair”, the first thing that comes to an Indian’s mind is electoral seat in politics. But don’t worry—I’m not going there today. To hell with politics. I’m here to talk about a very different kind of a chair. 

My mother was a teacher. As students, we would sit on benches while she sat on a big, sturdy chair. I used to look at that chair and wonder—how fun it must be to sit in it when I grow up! Spoiler alert: that never happened. Luckily for thousands of kids, I never became a teacher! 

Later, my mother was diagnosed with a condition called ataxia. Back in my childhood, people had simpler illnesses—TB, malaria, heart attacks, maybe even cancer. These days, we seem to discover a new one every week. Ataxia is one of them. It affects muscle control, which in turn affects balance, coordination, speech. But don’t worry—chances are, you’re not “lucky” enough to get it. 

Eventually, everything I just described happened to my mother. The same woman who spent decades standing and teaching thousands of students now had to rely on a wheelchair. Most middle-class kids inherit only values from their parents—I did too. But I also inherited something extra: ataxia. 

Look at your faces—absolutely priceless! You’re all thinking, “Wait, what’s going on here? Isn’t this supposed to be lighthearted and entertaining? Why is it getting so serious?”  It’s written all over you. It’s like going in to watch an action-packed Bollywood blockbuster movie and instead, the screen lights up with a deep, soul-searching drama! 

Relax. I’m not trying to make a documentary here. What I’m going to share is lighthearted—a little about me, a little about you, and a little about our dear ataxia. 

As I said earlier, ataxia first robs you of your muscle control, then your balance. One of my favorite childhood songs means “My steps faltered in love, But people thought, I was drunk” 

Now thanks to ataxia, I have tweaked the lyrics slightly which now means “My steps faltered in Ataxia, But people thought, I was drunk” 

This is what’s going on right now. It’s not just my steps that are wobbly—my speech has become slurred too. Which means everyone around me is now even more convinced. That’s why these days, I don’t leave the house without having at least two pegs. Once my throat is nicely warmed up, I hope, I suddenly start walking straighter than ever!! Like they say, fight poison with poison. 

When the doctor told me I’d soon need a walker, I replied, “That’s great! No need to change my brand—been taking Johnnie Walker from the start.” 

But ataxia isn’t all that bad. It has its perks too. Take airports, for example. You know that long line at the boarding gate? I don’t have to wait. Wheelchair users get to board first. While everyone else looks at me with pity, I toss back a smug look and channel my inner Amitabh, a Bollywood super-star, and think “Wherever I sit, that’s where the line begins”. 

Even at home, my husband, who used to start every sentence with “Where did you put the…?”, now quietly finds it himself. My teen-aged kids, who used to cry “Mom!” for everything from water to homework, now do their own work. 

But it’s not all laughs. Simple tasks that most people don’t even notice, have become challenges for me. Like grabbing a phone “quickly.” That word—“quickly”—has disappeared from my dictionary. The only thing I still do quickly is get angry! 

And even when I get angry, I can’t express it like I used to—by firing off words one after another. I mean, in my mind I’m still ranting away, nonstop. Years of habit don’t just disappear overnight. But because of this damned Ataxia, even my speech has changed. In a whole new, cruel way, I’ve lost control over my tongue, and the listener can’t make out the words clearly anymore. If we’re face-to-face, it’s still fine. But try understanding me on a phone call—it’s a whole new puzzle. 

So yes, ataxia changes things. But I’m not interested in the whole “Is it a curse or a blessing?” debate. The bigger question is—how do we deal with it? 

Surely, Ataxia affects me, but it also impacts my friends—like you.  

Now you might say, ‘Hey Lady, we’re doing just fine—why are you dragging us into all this?’ The reason is: in my current condition, I know many of you wonder—What exactly should we say to her? If you bring up the illness, it feels like you’re touching on an uncomfortable subject unnecessarily. And then again, if everyone keeps bringing it up all the time, you worry—Won’t she get tired of that too? But if you avoid the topic altogether, it might come off as insensitive. And even if you do talk, you’re unsure—How much is too much? You don’t want it to seem like you’re digging too deep. Go too deep, and it’s overwhelming. Stay too shallow, and it feels fake. What a dilemma! On the line of Shakespeare’s famous quote: “To speak or not to speak—that is the only question.” 

I understand your situation. But unfortunately, your answer seems to be: better to avoid it. That’s tough for someone like me, who loves to talk. And to talk, you need people. I don’t even like the word ‘antisocial’—it’s such a harsh word, and it certainly doesn’t describe me!” 

So stop overthinking. Just show up. What matters is that you meet me. I’ll feel worse if you don’t. I don’t expect you to talk to me about Ataxia. If you do, that’s lovely — and if you don’t, that’s perfectly fine too. Ask about the disease if you’re curious—just don’t hide behind excuses. I promise, when I feel like opening up, I will. I’m not the shy type, trust me! 

One more important thing — none of this is your fault. So stop feeling guilty. I once fell while chatting with my best friend—she felt awfully guilty. Her husband even joked, “How did you make her fall?” I replied, “Want me to fall again to show you?” No need to say, I got yelled at for that one, but it proves the point—falls happen. It’s not your fault. 

But tell me, do you people even get it? You think I can’t fall on my own? In fact, over the past few years, I’ve pretty much mastered the skill of falling! In fact, I’ve become an expert at falling! I blink, and boom—there I go. It’s that easy! 

Just throwing this out there. If you ever see me struggling, just ask if I need help. If I do, I’ll say, ‘Yes please’. If not, I’ll say ‘No thanks.’ But honestly, I don’t know if I’d ask for help myself—especially if you don’t even ask. 

Most importantly: this is a physical disease, not a cognitive one. In other words, Ataxia doesn’t impact a person’s intellectual abilities. The person can hear you, understand you, and feel everything the same as before. 

But this is where things get tricky. People assume that someone in a wheelchair is completely disabled and tend to avoid speaking to the person directly. Yes, the person can’t run, climb, or jump. But that person can sit next to you and chat just fine. Just put in a little effort to communicate—that’s all it takes.  

Something else I’ve noticed— people often leave them out, thinking, ‘What’s the point? What would they even do there?’ 

There is a famous quote “Diversity is being invited to the party. Inclusion is being asked to dance.” In this situation, I would rather say: “Diversity is being invited to the party. Inclusion is being allowed to decide whether I want to dance or not!” 

Parties aren’t only about dancing. There’s equal joy in simply sitting and watching your loved ones have fun on the dance floor. 

Now you might think, “Oh come on Lady! How much more are you going to grumble about us?” But that’s not my intention. If I were in your shoes, I might have done the same things. But I’ve seen my mother and son go through this—and now it’s my turn. They say: “Learn from the mistakes of others. You can’t live long enough to make them all yourself.” 

I’m trying. My mother and son would often get upset when people couldn’t understand them. I’ve learned from that. I know I need to speak more slowly and clearly. So if you can’t understand me—just ask me to repeat.  

These and many other such adjustments will have to be made. I will make them — but not alone. I need my people. I need you. 

And that’s why I’m sharing this—with the hope that your perspective shifts, and someone benefits. Especially kids. If you see any ‘Specially Abled’ kids, like my Neil, include them. They crave your friendship. Talk to your kids about this. We weren’t taught these things in school. Now it’s up to us to teach the next generation. 

That’s all I wanted to say. And saying it wasn’t easy. I didn’t want to make it too serious. If I were doing stand-up comedy, I’d have to stand for it—and well, that’s out of the question! So here I am, sitting down, sharing my ‘Saga of a CHAIR”. 

A little poem before I go, just for you: 

Something’s gone askew, 

My balance falters too, 

Lately, it’s all askew — 

Far too much. 

Drop in, don’t delay, 

Yes, I’m still the same, I say, 

Forever yours, always — 

So no worries, okay? 

Let’s chat and laugh awhile, 

Coffee plans in style, 

Simple, smooth, no guile — 

Just like the old days. 

Now I’ll wrap this note, 

Not “going,” just a quote — 

I’ll be back, please note, 

Very soon… 

I’ll be back, please note… 

Very soon.