What ifs and should haves

  My mother makes a beetroot-pachadi that does not fit into a genre and is often just simply red Athira Elssa Johnson Born to a family that migrated from Kottayam, Kerala, on an ox-cart to a forest area in Kulathupuzha (Kollam, Kerala), amma’s family consisted of her mother (pennamma), grandmother (achi) and grandfather (appachan).  The stories she narrates of her home in Kulathupuzha are filled with mystery, events, tragedy, wild animals, hopes, and many forest idioms.  The shift from forest to village happened after she married my father, my dada — that’s where the story of her version of pachadi began. Pachadi is a curry, also a salad, a side dish, a combination of yogurt and any vegetable — particularly beetroot or cucumber — cooked together and seasoned with smashed raw mustard. My mother learned it from her mother, my penamma.  Pennamma was a single mother, someone so sure and sorted, she knew she should stay back with her parents than stay at her husband’s pl...

Athira Elssa Johnson Listening to narrations of my counterparts on covering deprivation I know for a fact that Journalism still hangs on to atrocity-poverty porn and gets away with it. In a space like that it is difficult to write a diary or a project experience that was normal to me, that is about people I see, and talk to, live with since the day I can remember.  But all I can think from the experience is to wish that once in a while these elite journalists from elite colleges whose flowery language and motivational stories they think will save the world meet someone like Radamani of Arippa Samarabhoomi( Arippa Protest site).  She was sure as to why it was not worth it to trust anyone who is outside of the protest site.  After shooing me away she asked me if I have any clue where I am standing, she scanned me for the next few hours, asked everything about me, and said, “You might understand the health scenario here. You will understand how my daughter is surviving blood...

          Year 2020     Introduction to the script :   The structural inequality being the most visible, this film is on the sidestepping of the cases and faces of Isolation, the different frequencies of the same.   Writer/about me: This comes from me who is a drug resistant tb patient and trying to cope with the continuing isolation and traumatizing medication. Two years of isolation now, many more months to go and an experience with tuberculosis from 2015, a onetime intestinal tuberculosis survivor, now a drug resistant tuberculosis patient.   Purpose : An attempt to make drug resistant tuberculosis to be a subject to be talked about, at least now when we are trying to correlate with the covid19 pandemic. No concern is given to deadly illnesses like tuberculosis it opens doors to social and economic justice, political attention. This film is to remind that we were here this entire time too, we are still here, kee...

 ************************************* When I was a child I never had good dreams at sleep I had to go through a lot to sleep, that part hasn't changed There was always too much chaos, sometimes in a desert, marooned Sometimes fire that would gulp down my whole Sometimes waterbodies too vast that I can't control The water sources if not shallow are scarier to imagine. Think of someone made to sit on a pole but in the middle of a sea And the wind is soo hard that the pole starts swinging and the little wooden plank on which you are sitting is drifting out of control There's no trace of land that you don't know in what direction to scream for help It's not like many would help even then, coz the sea could be afar Help is also impossible coz they don't know you exist Maybe there's no land at all In dreams, you don't get nostalgia not because the realm doesn't exist in the dream But because not all have the privilege of nostalgia, maybe yo...

**The TB mentions in the writeup is from my personal experience and learning with tuberculosis and drug resistant tuberculosis only.*** So most of the time when there is a mention of tuberculosis, nobody wants to associate with it even just talking about it...Drug resistant tuberculosis which is deadlier is not talked about at all too ( and these two are different : Drug resistant Tuberculosis and Tuberculosis is not the same, not getting into that now ) But even when the stigma of shame is there and even when tb community is not given attention, In one way or the other you are all, we are all associated with tuberculosis , like we are associated with breathing. But if that ain't shaking our conscience  ,by considering the stats, definitely people living with us or next to us are affected by tuberculosis and Drug resistant tuberculosis, someone in the family doesn't want to talk about what they are going through because they do not feel safe to talk about it. We are the same pe...

 Since the XDRTB regimen started I had to stop my OCD medication as I would throw up the TB drugs also and I cudnt risk to miss the tb medication. Amidst covid when hospital visits and any monitoring is hard I have very little control of my anxiety and it worsened my ocd. And what is more triggering is seeing posts everyday about ocd, especially what is not ocd.  Ever thought how  people who suffer from ocd feel when you belittle their life interrupting ocd rituals, compulsions, obsessions, intrusive thoughts and everything with your temperory doubts, orderliness, cleanliness or whatsoever which you apparently term as ocd because you think somebody else's experience is easy to imagine and you saw on the internet that cleanliness means ocd. It could be different for individuals I agree, but you want things organized doesn't mean you have ocd, instead of just saving ocd memes, one can go through testimonies, texts, booklets, experiences of people with ocd. It's disappointin...

When I used to explain about my illness to someone I always say I feel betrayed by the state, hearing this people would come up with things like 'what did anyone out there has to do anything with ur illness,they would say there is tb bacteria in the air and you got it that's all, nothing else! and I would go on with "govts didn't tackle, their Inaction and thats how I got TB". And the reactions goes like 'it's sad u have drug resistant tb but blaming it on the govts is stupid, they say I politicize everything and then send me reports proving the govts stand that says they will end tb in 2025, 2030 in some. And today, now when there are even scarier reports coming up ppl are cheering for the temples and the statues again, they would come with another time frame and say we will end tb, covid or whatever and many would buy that. The thing is in between the cheering, the debates, the truth and the lies many are dying.

November2019. There is the culture test that happens every month and we wait eagerly to know whether it's a positive or negative. I wait every month to see if any of the doses will be reduced or changed coz ughhh those pills! I throw up by the very sight of it. The very thought about it, is pukish.  The previous regimen had it worse, the one called ethinomide or so(the drug was later changed as I was intolerable to it) it was yellow and made me hate everything in yellow or a similar tint. There is another one in brown, now I hate chocolate, colour maroon and dark red. Then many of the white pills and yeah some coloured granules to gulp too. The treatment is hard on various levels and nothing's really colourful about what everyone call as healing. It's somehow finishing the regimen/course and being tb free coz that's the only option.

People undergoing traumitizing medication, handling its sideffects and keeping up with the medication despite all the mental, physical, other difficulties are not obliged in any way to give  eye-opening health study classes and 'did you know' facts about their health condition to anyone!!!  Even if they are vocal about their conditions on social media, they do not owe you their time or labour to enlighten you further on this in your personal chat logs. Unless they chose to detail it to you without any doubt or on a full on consent or when they are fully ready.  Why do you think I am somehow supposed to brief you about my illness!  The energy you take to pop up in my inbox and type "What is drug resistant tuberculosis , send a voice note", use the same energy and find the answers online on your own, find it on authentic websites where its made available, stop expecting us to serve you with the info to your privileged heads.  I am no educator nor I claim to have a...

I have a strong dislike and aversion for heavy rains, these days it rains here, it kills my whole system, makes me even more hidden, weak and physically painful to a level my body cannot take it. When I had injections everyday; it was worst, the needle poking pain in the whole body would last long, wont go away. The numbness and tingling sensation in the body stay, its a sideffect of the horrible meds. The intake of the pills is nauseating and intolerable especially  during rainy time. I cannot imagine someone taking these meds in an uncomfortable weather, harsh climate or any intolerable conditions, coz having taken these meds for long,  to me its an almost sure thing that in discomfort I vomit and reject the meds and there is this anxiety racing on wat if I vomit the meds , knowing no doses should be missed.   I cannot go near the meds, would touch it only when I had to put it in my mouth, would then rush to wash my hands repeatedly until the tinge and smell of the...

Messaging me 'You dont look sick', is not a compliment. Its infact  triggering to me as some of my relatives already pass comments like that showing disbelief about my illness. From the initial days of the pre xdr regimen i. e 2019, with increase in the duration of the medication, my fear also increased, we had tried to explain things to our relatives about how the regimen, sideffects affect physically, mentally and financially. My relatives and grandparents had always showed their very visible hatred to me and so the illness didnt do any good to the mess. With a lot of cries and breakdowns my gandparents were shifted to our aunt's place since I coudnt breathe or walk around in fear of infecting them. Cutting of these ties made me feel better in head. And some months passed now  and I am starting to walk around the house, starting to understand things and I look different now, I have gained weight, my skin is darker. So followed the problem, how come she has gained weight a...

In 2018 when started with the medication for drug resistant tuberculosis since then I had not been outside other than taking hospital visits for the injections n monitoring of the sideffects frm the meds. And I am certain that there are many like me, isolated for years or months. Disoriented and confused by all the detachment frm everything. So these quarantine tips, writeups on how to kill time in isolation, or how sad physical distancing is, all this brimming on my timeline angers me. Coz,  there had been infectious illnesses and ppl suffering frm it, chronic illnesses and it's survivors talking abt this, all this dancing over ur head and only now when there's a deadly virus around ,and it's spread is quite alot visible, so all are like,awww I am sad and lonely I need to stay inside my home, doing nothing. But killer diseases like tuberculosis, drug resistant tuberculosis are swept under the carpet. Lives in isolation for years, deaths, none bats an eye.  Out of many stor...

🖤28-06-2020💜 After some two months or so approx I would bore the person and the person leaves; thats my usual friendship pattern. But its been different with pavam Sneha and rebel who stay despite me being awkward and grumpy all the time.  Aswin D Rebel and Sneha Sn are the ones to whom I have taken out all of my emotions to and I am not sure how many times I have lashed out at them. After every angry scene I would check on their accounts to see whether I am blocked but they only send memes,  make stickers and act weird so its always super comfortable with these two. Yesterday they brought these beautiful flowers (actually saplings that I later planted) and a lovely cake !  At 12am my parents wished me with some cupcakes, my sister made a photowall for me and people whom I have huge respect for, whom I thought might not even know I even existed wished me love in such difficult times,  yesterday was good that I am taking printouts of these pictures, wishes, messages...

Hi❤ Isn't it disheartening  to see that even being a society having large amount of people struggling with their mental afflictions ,we still haven't  recognised how complicated the subject is.  I was asked to ignore negativity and focus on the positive side of my illness,to not make a big deal out of the mental pressure. Well, its all done with the best of benevolence in them. But in the real world of experiencing this... I am no way planning to romanticise my MDR TB drug induced mental imbalance. That's why I asked for a therapist. I insisted to discuss whats going on in my head. I wouldn't hide to discuss the dangers and pain tb causes just to make things look good. we can only initiate discourse on this by passing the mic to the people with original experiences. Also at times someone's made up tips to overcome depression not substantiated by any scientific approach might draw attention and lead a huge amount of ppl to not give clinical attention to their is...

Hi y'all,  so, In the initial stages of my diagnosis, my doctor after analysing the results of the CB-NAAT, declared me having MDR TB. It did not shock me since I desperately wanted answers to my unstoppable coughing , vomiting, anxieties and everything that I hated. At last there was an answer. Having massive trust in modern medication I convinced my family that all the prescribed  daily injections are okay and oral pills are fine. I was mentally well prepared. But when it started , in the second month I went to a pace of complete denial. No fact findings , nor medical jargons made sense to me. I kept questioning doctors for putting me in such a mess which they called treatment.  Most of the afflictions were drug induced.Whenever in senses, I started looking for more details about people who have faced similar phase in life. I found some brave hearts. I have completed three months of medication due to the support of these faces( with whom I am in constant communic...

The mental struggle is the hardest, Isolated or not you feel lonely, not been able to engage with the world I used to, here;  music doesn't help, neither book reading. Drugs trick you to a grim state, we might think we could outsmart it; but nope, it taunts, bringing an imagery of all the sufferings of the world, it mocks constantly  reminding you that there are a lot out there struggling; you never gave thoughts on them, did you? Until it caught you.

Here it is to X'mas eve, here it is to new year cheers, coz its definitely not TB day there's three or more months for TB day Big B campaigns rule that day policies come in banners of art leaders who wear gold breathe some different air.. But  we breathe and cough under the statues they build..  Ain't it their strategy to shoot issues over issues,  that let u forget little girl Vedha died of TB,right here in Kerala, highest literacy rate couldn't  notice Vedha coz TB is not fancy, But today is  no world TB day, its no March 24, Today is the time of carol cheers and santa lies Xmas booze is okay, you all get drunk its okay, I cough, crawl and throw up, so its soo much more like xmas.. Is it 2030 ? No its only 2019 nearing. 2030 is the end tb target year. But India sees 2025 the target year. Our PM tweeted,there he promised. But we were also promised some 15lakhs in money, all other promises vanishing into thin air, what we breathe is clearly tox...

My parent's  friends of friend's of friend at the hospital : oh poor you! With mask n all, Allergy? Me: nope. Its MDR-TB stay away with your child or get a mask. My parents(laughing ): u should stop freaking out ppl like that, u can get away with it, u have a mask to hide faces. * cringe*.

Hi y'all To all the angry messages, ppl who have cut me off, blocked from social sites or the ones waiting for my apologies for not keeping in touch. I have been wanting to write to all since oct 5th when my treatment started, have not been in my senses these days. I write this post as my doc said to not make my illness very public. The villain is back, this time freakishingly strong. I was diagnosed with Intestinal TB in 2015 which was cured. The  treatment resulted in some side effects like depression, visual disturbances and forgetfulness. This time the illness is back in the form of MDR-TB which is  Multi-drug-resistant tuberculosis. This killer disease comes with worse treatment side effects like hearing loss, memory issues, depression n so on. I have terrible mental imbalance, mood swings and pain from medicines and daily injections. For now i am not able to write, read and register things due to high medicine dosages. I understand that there is a lot stigma around tb,...

He sends same song to other women and I thought I was the special one.. All his words plagiarised and I thought they were written afresh for me and me only.. Marx was his favourite name and now I know he didnt mean it.. We shared similar philosophy but his was farther from practise.. I always hated poems for he used to send me zillions of them.. people stare in rage when I say I trust no love and forevers ever again Little they know I am scared to lose and cant bear it again.. Women are dark continents like some thinkers say,  for we bear things in heart that your hard muscles rarely understand.. He used abbreviations when I speak details, I thought he is a man of few words but nope thats all he had to say.. He said he bears empathy but that's only where I got tricked.. He talked like a teacher who kept an eye on what I read and I do not encourage an entry as such to my home library.. I stopped penning poems at 19 when they looked like a page from my diary.. ...