The following video got me writing today’s blogpost. I hope you guys are able to view the video but if not, look for “Be grateful for what you have” video by Bright Side on YouTube. I’m guessing you’d find it there.
—-
I wasn’t expecting the end to be the way it is.
It made me feel a little heavy-hearted, because I’m aware of how some stories of EDS, chronic or rare illnesses can end. Within that moment of sudden sadness and mixed emotions, I saw the importance of staying present. I’m sure that had I not brought my attention back to the present, I’d probably have drowned in fear and forgotten that I still have today to live, to do what I can do with what I’ve got and to be grateful for all of it, not because I might not have it one day but because I have it today.
I’ve noticed, being grateful for something because you might not have it someday also to some extent, comes from the underlying fear; fear of not having enough or something. I find that I’m calmer, more capable of dealing with things and certainly happier if I show gratitude for what I have today, simply for having it today.
People ask me all kinds of questions, some questions being far more sensitive than the others and some I only have one common answer for, “I don’t have an answer yet.” A lot of them simply want to know what future holds for someone with HMS- EDS.
“What if you end up on a wheelchair?”
“What about having a family? Will your body be able to handle pregnancy?”
“Your illness makes you so high-maintenance. All the cab rides, daily medicines, Pilates and physiotherapy etc etc. How do you plan to continue paying for it all throughout life?”
“What if you have to depend on someone for the rest of your life?”
To some questions, I’ve got answers which will change over time. That’s because there is a factual and a personal component to them, both of which can change a situation (or an answer) to a large extent. Some of these questions are extremely valid, but if I were to be very honest, all I can say is that as a patient, there is only so much you can do.
Most of the time, those patients who come across as brave or courageous are in fact the ones who’ve thought about it all and have then made a choice to come back to the present because they also realize that they themselves do not have a complete answer. We are all aware of the uncertainty but we choose to become comfortable with not knowing enough. Because we don’t.
No one does.
Over the years, my body has taught me the importance of doing everything I possibly can today and letting go at the same time, and seeing how life unfolds from there. I’ve had to work on becoming alright with my disability and work with my ability to do what I can do, and to wake up every morning and get through the day. For the kind of workaholic and detailed planner that I used to be, and for the kind of environment I grew up in, it has taken a lot of effort to channel my energy into the present more than the future and to come to terms with the fact that certain things are beyond our control.
You see, that is why, it is so crucial for someone with a strange illness (especially) to attempt to find that balance between preparing enough for the future and staying true to the situation today, both at the same time… to be aware of what the future holds and to live every moment today has to offer, to the fullest. Anything can happen a year (or years) from now, a month from now, a week from now, a day from now or even an hour from now, right?
Thanks for reading
Love,
Manasi Dalvi
❤︎
My Tape Story 