Updated: Mar 24, 2022
So many amazing stories have been shared this month, and i have another one for you today!! Megha i want to thank you for sharing your testing process with us!
This story, will bring a tear to your eye, and make you want to reach out and hug Megha. Thank you so much lovely for sharing such a raw and honest story about your testing experience. You are an amazingly strong person, and I'm not going to lie, when i read the last line of your story, i smirked and said 'Yes girl!'. I am so proud of you and i am sure that everyone who reads this will be too. You've got this, stay strong and know you have the HD community behind you.
*Warning - there is causing in this blog post, but sure what new over here on #Imnotdrunk :D:D i just have to give you's a heads up...*
We stood blankly, waiting for the elevator – not a word exchanged between us, and the terrible expression on my face wasn’t helping either.
Fuck this, I thought to myself and headed for the stairs, with my mother carefully tiptoeing behind me. It had to be hard – here she was, with her daughter, at the genealogist’s, 3 days before Christmas while holidaying in Bombay, to find out if she’s inherited Huntington’s from her dad.
But this was a conversation that had taken place all too often between us. She’d basically convinced me with every tactic possible to not go ahead with a test, but things had changed. My father was dead and there was an emotional cloud hanging over our family that we didn’t speak about, and I was 23 and tired of being shielded from the unavoidable.
Still, she’d brought my grandmother along to the hospital! Why had she done that?! Going in for this appointment did not feel easy, my body clenching and tensed with every day, every hour that closed in, knowing – always knowing that the truth was going to come out, and this time clinically from a doctor’s test results. I didn’t need more people privy on this, especially not my grandmother, just sitting and watching her granddaughter probably walk into a life of hell only because she had taken the decision of getting her daughter married into a family riddled with this disease 30 years back.
I wasn’t being easy, and I evidently made things harder for my mother, oddly enjoying the punishment I was putting her through cause I had no idea how to vent my pain and nervousness any other way.
“So, you are aware of the consequences of having Huntington’s, and getting tested?” the doctor asked in an icy tone.
“Yes, I’ve done enough research on this for long enough” I overstepped the line, heaving inside but putting on a ridiculously brave front.
“But you are aware that your family might not have had Huntington’s right, since, uh, it was never clinically tested?” she turned to my mother.
“Yes that’s true, we tried getting my husband to get a blood test done a couple of years back when my son wanted to get tested but he absolutely refused, but we’ve always known it is Huntington’s, with all of them – the signs are accurate and every psychiatrist for my husband, sister in law and father in law has told us its Huntington’s” my mum replied nervously.
“Yes, of course, but it could be some other motor neuron disease, I just want to make sure you are aware that there is a chance that it isn’t Huntington’s at all?”
Yes, of course, I was fucking aware! I had forced myself to be aware since I was 14, believing in the smallest possibility that it was not Huntington’s, but we just knew…we always did. And this was simply a verification, proof for my mother, validation and justification of my fear.
All I was doing was proving a point.
But I probably wasn’t prepared for the next 30 minutes that followed. I had assumed I would be taken to a counsellor for anything between a month to a year before they felt I was prepared to get tested. But here I was, being led to a researcher at the lab to get a little more knowledge about the test, and then, THE TEST.
One simple blood test was all it would take. So I sat, gut-wrenching and heart beating, but painfully calm as I gave my blood. My mother was holding my hand, but I had my face turned away – I couldn’t handle it any longer. Tears streamed down my face uncontrollably.
On any given day, I would probably do everything to hide my pain, especially if the pain was so rotten, but this was a feeling I really couldn’t understand and every possible emotion in the world seemed to be scrambling inside my stomach, making my body go limp.
After the test, we sat outside the lab, while I held the cotton ball to my vein, stopping the blood, tears still flowing.
“Are you missing pop?” my mother asked me, her eyes going red as the conversation progressed.
I could only nod my head in a ‘no’. “Did it hurt?” I nodded a no again, this time mixed with a laugh that signalled a ‘don’t be ridiculous!’
“Then what Meggie, are you scared? I told you don’t do this”, but I nodded a no again, and the tears just streamed down more violently.
We just sat there, two women crying awkwardly in the waiting room of a lab, while the world moved around us – we went unnoticed.
I can’t completely explain what I was going through. Years of seeing a sick parent, a dysfunctional family, hating my father, being embarrassed by him, finding out he was sick and then finding out what Huntington’s was, finally rebuilding a relationship with my father, wanting to get tested, making films and writing stories on Huntington’s, his death and everything that had followed after – it was all smacking my in the face right now, all at one go.
I probably will never understand the emotions that ran through me that day, but it was the understanding that I was taking the most important decision in my life ever that humbled me.
It was the 26th already. I knew my results should be out within the day. The fact that it was a day after Christmas and my concentration seemed to have taken a hike, I decided to just go out on a limb and call the doctor to find out the status of my result. What’s the worse that could happen! My patience was dwindling.
I stepped out into the lobby, trembling as I was connected to my doctor.
“Hi, Dr Patel, this is Megha. I was just calling to find out about the status of my results?”
“Yes hi, Megha” came the overly polite reply. “Didn’t they tell you?”
“Uhmmm” Tell me what! What are they supposed to tell me! My mind was running a million miles every second and doubtless to say her words had confirmed the inevitable, but I remained unruffled.
“Well, hold the line for a moment, I will just call the lab and confirm the results they sent me and let you know?”
“Absolutely” I replied, roaming aimlessly – fascinated to discover this new side of me, the one where the strangest cool came over me in the moments where I had zero control.
“Yes, so Megha, I am sorry, but it is positive. If you could come in tomorrow post noon we can discuss the exact CAG count and what it means and future steps you can take?” She still sounded like an automated voice, but what was I expecting, maybe the slightest emotion when she gave me the bad news.
My heart was breaking, and I could feel my body waiting to explode, so I rushed a “Yes absolutely, I shall confirm the time with a message” before cutting the call and walking steadily to the ground floor bathroom near the conference hall where nobody went.
I realized how much I was holding in as I opened that door. I have no idea what had come over me, but I broke, I really did. Rushing towards the sink, I put on all the taps to get the water running before I held tight onto the sink and silently screamed. I wasn’t sure if it was more important to hold the sink from making sure I didn’t fall or my stomach from making sure I didn’t collapse, but it was finally hitting me.
This wasn’t a joke, goddamnit, I had Huntington’s.
I spent the next half an hour, with the bathroom locked, playing out images of my father before he went – his twiddling fingers, the sloppy walk and drooping shoulder, the rickety thin figure and repetitive words, but mostly the absolute loss of dignity in the eyes of everybody who now no more saw him as a person, but instead a shadow, a thing, a patient. I was him now, I took pity on myself. I felt pathetic.
I went back up to the office, and called my mother, informing her about the results and promptly picked up my bag and left.
Standing below my building, unable to muster the courage of seeing my mother, I smoked about 3 cigarettes. Then, I called Kutti.
I knew I shouldn’t have been doing it, he was vacationing with his school friends, and we weren’t even dating anymore, but all that was running through my mind was the first time I had told him about Huntington’s and the fact that he had met my father, days before his death and that my father loved him.
“Megha Banerjee Bhaduri! Wassup wassup wassup!” crackling through the bad telephone connection, I couldn’t help but smile. “Kutts, I’ve got Huntington’s”
“No man, what are you saying!” he replied, almost aloof.
“Kutti, I got my results, I have Huntington’s”, my irritation rising.
“Smch megha, nothing will happen. They’ll find a cure”
“That’s what you have to say?” my voice was rising, my face souring up. “What the fuck Kutti, I fucking tell you I have fucking HD and you turn around and fucking tell me they’ll find a fucking a cure!”
“Woah woah woah Meggie, Im just trying to help!”
“And fuck how! By telling me you couldn’t give two fucks if I had HD?” my brain was twisting his words, and doing it consciously, I was a bomb waiting to detonate, and I had to explode on Kutti.
“I didn’t mean that Megha, I only said that to distract you…”
“No you didn’t Kutti!” I was screaming through sniffs and breathless tears by now. “You couldn’t fucking care, and I have it, are you happy now!”
“Megha, you’re really pushing it, you know I didn’t…”
“You fucking treat me like a dog, I’m sitting here with a shithole of a life and your fucking partying away in Shillong probably sucking on someone’s neck…”
The phone had gone blank. Kutti had cut the call. Was I supposed to expect anything else?
I stood there, a smile emerging on my face, happy that I had finally let go of all the emotions that had been clustering inside me, as I lit another cigarette, proud, confused and upset and the emotional state I found myself in.
Back home, my mother didn’t speak a word to me the whole day, as the two of us sat like dead bodies across the TV, flipping channels, allowing the sounds to fill the room that felt like it was expanding with every passing second that we remained silent.
The next morning, waiting for our cab to arrive was, I saw my mother express her first emotions since I had informed her, speaking to my brother over the phone she teared up, telling him not to inform my paternal grandmother because she didn’t need the stress. I was mad, I really was. Why did she have to let her emotions out in a way which hurt me, why could she just not speak to me!
“Seriously? You can talk to Neildada but not to fucking me?” My voice was escalating and by the end, I was roaring, bellowing at a parent sitting across from me, eyes red, unable to control her emotions. I was embarrassed; she didn’t need this, I needed to stop taking my anger out on everyone. I stormed out of the house, slamming the door on my way, escaping the ugly scenario I had single-handedly created.
It was raining heavily for less than an hour and the roads were already flooded. I sat staring out the window of our cab, hoping to not have a conversation with my mother about our fight, about Huntington’s or about anything at all. I wasn’t sure whether it made me happy that it was taking so long to reach the hospital, or irritated that I was going to be stuck in a claustrophobic car with my mother sharing an extremely long and painful awkward silence, but most of all I was flustered that I had zero control on my emotions, and was finding it this hard to pinpoint what was wrong.
“Meggie please…I’m really trying” my mother’s voice was already breaking, but I refused to turn my head around and actually face her. “You don’t utter a fucking word to me all day and then start fucking crying to Neildada over the phone, it’s not fucking good enough,” I said through gritted teeth, trying really hard to keep my tears and anger at bay.
“I don’t know how to handle this…please just tell me why you did this, why…” I interrupted her with hysteria and irritation rising in my voice. “Because mummy, I knew I had it, this was just fucking proving it.” I had turned my head by now, and what sat opposite me was not my boisterous and strong mother, but some decrepit shadow of herself. I could feel myself going weak looking at her. I couldn’t put up this brave front much longer.
“Okay, tell me what made you think you have Huntington’s, I mean how did it even occur to you”. “I don’t know…I can’t sleep for nights in a row because I’m thinking about one goddamn thing for 6 hours? Or the fact there have been days that I have physically not been able to get out of bed and go to work cause my body won't budge or the fact that I genuinely forget things quickly, or I think too much, or I repeat things or…” she cut me off, trying to find some semblance of assurance in what she would say next. “But these things happen to a lot of people, especially at your age, why Huntington’s?”
“Because Mummy!” I had turned my head back to the window, beginning to cry. “I can’t explain it, I have always been like this and you know that, and it’s always been fucking internal and not because of something happening outside!” I was going bitter now, the sarcasm coming out in my voice. “How the fuck will you know, ask papa. No, wait, you can’t! Because he is fucking dead, and I will fucking be there too!”
But like most units, one person finds the strength to straighten up when the other one falls apart. “Listen to me now, and do not interrupt me,” she said, wiping her tears. “Nothing will happen to you. You will not sit and whine about this, papa did not, neither will you. Show yourself some respect and live your life happily, one disease will change nothing! And if it ever does, I’ll probably die after you so I’ll be your nurse, your dad’s trained me enough for that” I turned my face to her, wiping my red eyes, cracking up through the tears at the oddity of the conversation. Like a classic family movie, we were yet again turning another scary or sad moment into one we could laugh through and I was assured that I wouldn’t have to take a single step of any of this alone again.
This was clearly a day for coming clean. As my mother and I sat on the lab floor, waiting for the doctor to write up a report, she told me her own fears for the first time. “I’m scared Meggie…that you’ll turn into your pop, that I’m going to have to be a nurse for another 15-20 years of my life, I’m scared” she whimpered, sniffing and breathing deeply before she continued. “I’ve spent so many years of my life pushing your dad, being hard on him, not being a crutch because he would break otherwise – I was the bitch, I was mean and he hated me for it, and I can already see you hating me because you think I don’t sympathize with you, but I just don’t want you to fall apart and let this take over”.
It is possible that in all my life I have probably never felt what I did at that moment. My mother and I sat together crying, scared for the future and hurting because of the past – helpless, really helpless. We both knew we had a hell of a terrible ride ahead of us, it’s strange when you can predict your future and know where your life will end, and it’s even scarier to wait in anticipation of it for 10-15 years. But you have to figure things out, and we had to do it for each other.
So we finally had the results, the stress beginning to melt away as we informed our family members about it, and were now off to Panchgani for a new year’s break. I saw everyone around me gather to celebrate the year, amused at the irony of it all – it had been one of the worst years of our lives, with my father dying in the beginning and me being diagnosed with HD at the end – but this was how I knew my family. We never gave up; we had been trained through generations of illness to push through come what may, and to do with pride – not in spite of Huntington’s but for it.
As the clock ticked towards a new year, I took a walk alone. I lit a cigarette and allowed myself to watch the fireworks – and it was surreal. I had no hatred, no pain and no frustration in me about a life I hadn’t chosen for myself, all I had was unencumbered gratitude and love for the security net of friends and family that I had managed to build in those 23 years that would hold onto me even when I gave up.
“Bring it on motherfucker” I whispered with a sneer, “Bring it fucking on!”
*If you feel like to need to talk to someone after reading this please reach out for support and advice! If you are not sure where to get it, drop me or someone in the HD community a message and we will help direct you to the right person. If reading about testing has brought up questions for you please talk to someone, whether that be a trusted family or friend, Dr, professional or your local HD association. PLEASE TALK TO SOMEONE. You are not alone!