Schizophrenia International Research Society

Savit Joshi.

 

When I think of his name, I see a selfless, joyful, and down-to-earth child that genuinely cared for everyone around him. Watching him grow up was a sight to see, and from a brother’s perspective, I have memories now that I will cherish for the rest of my life. His scintillating smile would illuminate any room and his contagious laughter would uplift everyone's spirits. As a beacon of light, he always put in an active effort to make sure everyone felt included and to create a safe space for them. These were just a few of the many beautiful traits that made him human. When I ponder on all of this, it is difficult to imagine that this same person would take their own life years later at the age of 22. It pains me deeply to write about what happened, but as I have told many others, I believe it is extremely important to get Savit’s story out to all of you - my friends, family, and people in our extended network that may read this. Too often we internalize our struggles and forget that we are not alone. I know his story will be the pillar that holds up countless others that may be suffering as well.

 

For the past four years, Savit had suffered from extreme cases of mental illness. It started as soon as he entered college when he was diagnosed with severe anxiety and depression. When I first got hints that he was enduring both, I never thought it would result in what just happened. I know many people who have gone through these illnesses have gotten themselves out of it using their strength and the support of others. Although my brother truly had this same strength and support, his fate was not so fortunate. When COVID and the quarantine started, his mental illness manifested into something that I would not wish on my worst enemy. He developed psychosis, which quite literally caused him to lose touch with reality, and consequently had manic episodes that resulted in multiple hospitalizations and multiple rounds of medication. To put it frankly, these manic episodes were times when he was not himself anymore and acted as if he was possessed. These episodes reached a point where it was unsafe to be around him due to his excessive aggression and instability. After the third or fourth hospitalization, Savit was diagnosed with bipolar disorder and then after his fifth hospitalization, his final diagnosis was paranoid schizophrenia.

I want to stress that none of this behavior and mental state was his fault, but rather symptoms of a very complicated disease that no one knew how to handle.

 

When Savit’s psychiatrist gave the final diagnosis, I knew things were going to be very different going forward. It took multiple episodes before Savit’s doctors finally gave a confident diagnosis. However, if you ask me, his schizophrenia was triggered long before the first episode. The doctors just did not have enough information yet to make that decision. On top of that, I believe the quarantine may have accelerated his mental deterioration. Regardless, almost every hour Savit was awake was filled with intense fear and hopelessness; a black hole with no way out. It is hard to imagine, but his reality compared to everyone else’s was just a constant, mind-numbing horror that he could not escape. He was hearing things and then later seeing things that he could not explain with his words, and we were left distressed with his bizarre behavior. He would often proclaim fabricated beliefs about himself and his own family that were so absurd that they left us utterly appalled, but were absolute to him. His mind had put itself in a state of purgatory and my parents and I would see the trauma in his eyes. It would break our hearts when we realized that he wasn’t comprehending anything around him or anything we were saying to him. Savit had changed into someone I did not recognize, and a year after he was diagnosed with schizophrenia, the cheerful brother I had grown up with was long gone. By the last few months of his life, he had become a shell of who he used to be. The worst part is that his mental state quickly turned into something that was out of anyone’s control, including his own. While my parents and I were confused and conflicted on how to help him, the fact of the matter is that there was nothing we could do but show him support when it was necessary. In essence, the time bomb had already been armed and there was nothing we could do to defuse it.

 

After reading this story, it is time to tie it together with the facts about these diseases and what they are capable of. Savit’s depression, anxiety, and bipolar disorder were relatively straightforward to diagnose and treat in comparison to his mania, psychosis, and schizophrenia. The latter three were extremely tricky to diagnose because they all fall under the same spectrum of schizophrenic disorders, all of which can profoundly impair the individual’s educational, occupational, and social function. In general, schizophrenia is a complex and long-term mental illness that affects a person’s ability to think clearly, function cognitively, manage emotions, relate with others, and, most importantly, determine reality. The symptoms fall into three main categories - positive, negative, and cognitive symptoms.

 

Positive symptoms: The positive symptoms (psychotic symptoms) reflect things that are present for the individual that should not be. An example would be hallucinations - seeing, hearing, smelling, tasting, or feeling things that are not there. Another example would be delusions - false beliefs that don’t change even when the person is presented with evidence that they are false. This can present as extreme paranoia or irrational fears. Finally, there is the thought disorder where the individual goes through unusual thinking or disorganized speech.

 

Negative symptoms: The negative symptoms, on the other hand, are characteristics that should be present, but are not. These might include loss of motivation, lack of enjoyment in daily life, social withdrawal and reduced speaking, difficulty showing emotions, difficulty planning, beginning, and sustaining activities, and displaying a “flat affect”, or difficulty expressing emotions using facial expressions or voice tone.

 

Cognitive symptoms: Finally, cognitive symptoms can include problems with attention, concentration, and memory. These include problems such as difficulty processing information to make decisions, difficulty using information immediately after learning it, and difficulty focusing or paying attention.

 

Just reading about the symptoms associated with schizophrenia is overwhelming to think about, so I can't even begin to imagine what Savit was going through as someone who was actually battling through it. In retrospect, Savit’s fate was something so horrible that it angers me that it was even possible. Things changed so rapidly and unpredictably that it’s hard to deny that it was a perfect storm. Not only was he suffering from severe depression, anxiety, psychosis, mania, and bipolar disorder, but what really pushed him over the edge was his schizophrenia. In my eyes, schizophrenia is a vile, sinister and evil disease. How is it even possible that these auditory and visual hallucinations existed? What triggered it to develop? What prompted him to give credence to such irrational fears? Why did such a precious young man suffer through all these symptoms until he finally decided it was too much to bear? The resentment I’ve been feeling towards this disease and everything that came with it has been too much to handle. I’ve had sleepless nights thinking about the last four years and how I watched Savit’s mental state wither away in the manner it did. I felt like I had failed as a brother and as a person in general because I wasn't able to save my own brother. The countless times I tried taking him under my wing and trying to guide him through his mental health felt like wasted effort. The guilt and helplessness I’ve felt these past few weeks have been insufferable and I can’t help but think of ways I could have supported him better or put more effort in. It was just unbearable to see it all unfold. It is a disease from the darkest pits of hell and what angers me the most is how puzzling it is to not only the individuals dealing with it, but the doctors and healthcare workers that are trying their best to solve it.

 

This is why I created this GoFundMe - to find answers. I am tired of waking up every morning wondering what more I could have done to save my brother. In hindsight, the reason why it was so difficult for us as a family and for his doctors to help him was because there is still so much work to be done in finding the root cause of this disease. Research suggests a combination of physical, genetic, psychological, and environmental factors can make a person more likely to develop the condition. Some people may be prone to schizophrenia, and a stressful or emotional life event might trigger a psychotic episode - but that is all that is known so far. Because of this, the only thing doctors could do was manage Savit’s disease with medications that unfortunately took away the positive symptoms only. Currently, there aren't any medications or treatments that can solve the negative symptoms or create a sustainable, long-term solution that addresses the fundamentals of the disease. This is certainly not the fault of his doctors because they did everything they could with the resources they had and with what was in their immediate control. However, the fact that it is unknown is an intolerable answer to me and I refuse to let this disease claim any more lives. Like I said earlier, my family and I watched helplessly. Maybe now I can make a difference for those who may suffer from it in the future.

 

That being said, please find it within yourselves to donate to my brother’s cause. Any amount that you are comfortable with is more than enough because whether it's a dollar or a hundred dollars, your generosity could be the reason someone else isn’t pushed over the same edge my brother was. These donations will be going to the Schizophrenia International Research Society, a worldwide organization that aims to bring together researchers and clinicians in schizophrenia and related disorders. It is essentially a conference where researchers can convene and discuss their research/findings, and learn from others to use for their own research. I figured that instead of putting all the eggs in one basket, this would be a great way to impact dozens of researchers. On top of this, the donations can be used towards a research grant that is awarded to a researcher that shows promise in their findings. Aside from this, there’s not much more I can say about the situation and so I will leave it all up to you to help me make a difference. I purposely launched this GoFundMe on my birthday so that the perfect gift to me would be seeing the financial impact being made towards this cause. Please remember my brother’s name and carry on his legacy as if it were your own.

 

Savit Joshi.

06/22/1999 - 03/14/2022

 

Fly on little brother...