Hello! I’m Yamini. I’m a PhD student at Indiana University, Indianapolis. I’m a pineal tumor survivor. This blog is an attempt to share my insights on life on the tumor. I say I was on the tumor because to have a brain tumor is like waking up with the most terrible hangover you ever had every day except that you don’t need any substances to give you one.
In my capacity, I’m trying to reach out to all of you who are on a similar path and reassure you that it is not your fault! It is not easy to live with impairment and you should be proud of whatever you are able to do to the best of your abilities. I have been trying to remind myself this quote:
“Disabled people do not need to justify or compensate for our existence. We do not need to be smarter, more creative, more scientific, or more accomplished than non-disabled people in order to be loved and accepted. Above all, disabled people have the right to be ordinary.”
– Emily Sheera Cutler
I write this blog for two reasons:
- You don’t know what you don’t know. I came to know about recovery as I went through it and I wish someone told me what to expect. I find out about various symptoms, diagnoses, and treatment procedures as I navigate one after another. Had I known this information proactively, my life would have been very different, even better, today.
- It is very difficult if not impossible to go through this journey alone. There is nothing more disheartening than your loved ones doubting your sanity or finding your experience unfathomable. As private as I’m about my life, I want to put this information out there so there is more awareness about the condition and its symptoms. It is frustrating that we have so much to know about brain injuries although they are as old as dinosaurs. I hope that anyone who has to go through this journey has as much support as they need because the strength of the entire world seems to be inadequate when you can’t see the light at the end of the tunnel. In those scenarios, access to information of this kind could literally mean the difference between life and death.
I’m very open to discussing my medical progress in case you want to know any information. This blog might not be the most contemporary depiction of my situation but please reach me at yaminipatnaik.k AT gmail DOT com if you would like to discuss anything related to brain health.
Through this blog, I’d like to thank you all for the love and support you give me through my journey. A special shout-out to my facebook support group (cysters for life!) for making the recovery possible and PhD advisors for making accommodations for recovery through graduate school. How could this section ever end without thanking the man who saved my life with his minimally invasive procedure? Meet my hero, Dr. Hrayr Shahinian from Skullbase Institute. You’d think such people only exist in books, but, he is real!
Lots of love!