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This blog is another opportunity to feel grateful and thank you dear Universe: You continue to bless me with recovery and overall health.
India alone accounts for nearly 70 million rare disease patients. Most of these rare disease patients lived meaningful lives long before their diagnosis, and all of them have gone through a difficult experience during the pre- to post-diagnosis phase. As they might say, it can be critical to have the support of someone willing to reach out beyond the usual.
My journey since getting diagnosed with Isaacs’ Syndrome has been quite topsy turvy, with close friends turning strangers and strangers becoming buddies. Socializing became quite challenging, especially since my health became unpredictable over time and I ended up spending most of my energy on self-care. Although it never felt quite the same as having a family which connected with me on various levels, I was fortunately close to my family members. I strongly feel that our bonding helped me survive the entire path from diagnosis to recovery.
Also, I have always believed in being more of a friend than an acquaintance. But in my journey, though I lost some good friends, the ones who stayed proved incomparable as life buddies, and their understanding of my situation requires some explanation. In brief, my life buddies were:
Better informed in some cases, as they were equipped to handle certain queries that required significant research capabilities. In short, they were able to look up information in next to no time, expending little effort.
Able to converse on different topics, but also lend a listening ear: I never found having a dialogue with my intellectual friends tiring as they could discuss diverse topics. At a personal level, they often had better ideas than me, and I found it easier to pour my heart out to them. Most helpfully, we had several common interests, and they never shied away from challenging conversations.
Respectful of my space: As they came to understand me well, they knew when not to intrude and let me have the necessary space.
Keen on playing sports: We evidently bonded better while playing a sport, something that became difficult for my immediate family members, especially my parents, to participate in with the same energy levels.
Not judgmental: Friendship is a discretionary relationship between two people who tend to influence each other. As a result, any conversation on any topic under the sky is typically non-judgmental. As my life buddies knew me in an unvarnished manner, they often came forward to tell me the harshest truths. Hearing from them certainly left an impact on me.
Inspiring: They conveyed a positive message even through their body language, which felt incredibly real. At times, all they had to say was that I just do my best, which did the trick. Their vote of confidence sufficed to inspire me through those tough moments. They regularly pointed me to the upsides even in the worst of situations.
Able to have fun without reason: At times, the people around me would wonder when I last laughed my guts out for no reason. Somehow, friendship became a bunch of memories carried forward from school to college, and further. The connection with my friends was strong enough to rekindle joy and bring forth peals of laughter even at the most casual mention of the tiniest things.
As humans, we are not blessed with the power to read others’ minds, which is why we need to communicate well and express ourselves fully. Who better than a friend who can recognize and acknowledge our reality? With friends, it is ok not to be ok.
One of the best pieces of advice I got from a friend was to focus on the present instead of the future. At one time, every effort towards improving my present seemed to be in vain as no medicine, doctor, or treatment gave me any relief. I remember going through the kind of physical and emotional pain I had never experienced before. I was more worried as my life had changed in nearly no time before I could realize it was changing. In those tough moments, my friend asked me to focus on and try to deal with the issues at hand, however tough. People came and left, leaving behind a legible footprint that continues to gravitate me toward other people who have their stories and who know how those stories shaped them into becoming the people they are now. In my experience, they are the strong ones, the ones who invariably stay back.
What do your experiences tell you about friendship? Would you like to share your story too?
DISCLAIMER
The views expressed in this article are the author’s own and do not represent any kind of medical advice.
