Too Unwell To Read?

I wrote a book, not my obituary 🙂

In the last two weeks after announcing the release of Romancing Takayasu’s Arteritis, I have grown more curious than Mr Ollivander presenting the Oak Apple to Harry Potter. I had plenty of apprehensions before releasing the book. However, I never anticipated the curious predicament of people coming to know I have a rare, potentially fatal disease and then not having a clue about what to do with that disclosure. Please allow me to lighten the mood.

Relax! It Has Happened Before.

Familiarity scopes the extent to which we can attune ourselves to someone else’s woes. Tell people you are running a fever, and you will instantly have a posse of well-wishers fussing over you to pop a pill, book a blood test, or get some rest. Mention a back pain and there would be scores of recommendations for physiotherapy or changing your mattress. Confide about a chronic illness and your chats will overflow with people wanting to know every single detail sharing links and stories of fellow patients and alternative medicines. But say you have a bizarre, lifelong disease that is slowly degenerating all your arteries and has a name that sounds more fake than made-up, and conversations immediately take on the vibes of a funeral.

Sympathetic glances, voices toned down to whispers, or an awkward silence is unnerving, but understandable. Some people react as if you just handed them an emotional bill with a grossly inflated service charge that they neither asked for nor wish to pay. Even if you disclosed your condition in a context and at their behest. That is stupefying. Then there are the ones who are too dear to be polite and assume or openly accuse you of fishing for sympathy and attention. I have seen many such reactions in life and now a few similar responses to my book. Trust me, if the objective is to seek attention or waddle in sympathy, writing a 57,000-word memoir collating symptoms and experiences spanning over a decade is an idiotically elaborate and painful way of pursuing it.

So, Why Write Something Painful?

I have written Romancing Takayasu’s Arteritis because I have been with Takayasu Arteritis for twelve years now and, as fate would have it, I happen to be a professional wordsmith. I write for a living since 1995. So, it is not for pity, praise, or paying some bills that I decided to write another book. If a lifelong, life-altering disease becomes an unavoidable part of your daily life, and you get more sick of nobody knowing anything about it to the point of feeling absurd and apologetic to mention it anywhere anymore, eventually the writer in you is going to reach for the keyboard. That does not make this piece of writing an agenda. It is just the way I process my life experiences.

Think of it as an actor enacting a performance to convey a deeply personal encounter. A painter depicting a difficult individual experience on canvas. A musician composing some intimate turbulence into a melody. I wrote a book, primarily to create greater awareness about Takayasu Arteritis and to share my diagnostic mystery with my personal struggles beyond the case history. The book is for medical professionals across diverse specialties to know about the disease from a patient’s perspective. The book is for general readers to put a few smiles on their faces. The book is for fellow patients with lifelong ailments and their caregivers to help some more people start seeing comical twists in the ironies of life. It truly can be very therapeutic.

I Would Appreciate That…

If someone you know chooses to write a memoir about a personal peril, please suspend your pity and judgement. Focus on the literary expression and not the intentions or consequences of it. Do not think asking questions about it would make anything worse or cause additional misery. Please do be curious. Ask about the purpose of the book. What was it like to revisit those experiences? How would they want you to approach the book? What can you do with the story now that it has been told? They have not written the book solely for people who already know about their condition or cared enough to be part of their narrative. Yet, such people can relate to the story and be the first ones to comment on it with more conviction that a casual, unfamiliar reader. Do read the book and speak your mind about it. You are not liking or celebrating the fact that someone has a serious ailment. You are appreciating a person’s attempt to put a series of unsettling and sometimes agonising experiences between two covers hoping it might make someone else’s journey easier.

Regarding Romancing Takayasu’s arteritis, talk to me about it, but please do not feel sorry for me. I have survived long enough to write a memoir instead of becoming a memory. Do read the book and if you find it interesting then make a few more people smile while getting aware about Takayasu Arteritis. I wish you well and with my tongue in cheek I wish you more traction and speed. I cannot imagine anything horrible happening to people around me like they becoming too lazy. I simply presume the ones who have got the book but have not yet responded are too unwell to read… May God bless you. Please get well soon… :))