(Dis)ability and In(Dependency)


Last few days highlighted my disability and helplessness in ways I have and continue to learn and make peace with.

I fell at a shopping mall and hurt my knee (falling down or getting into an accident is a big nightmare from someone like me), I saw a beautiful cat get hit by a car and realized how I couldn’t do much to save her only due to my physical limitations (post coming up) and the emotional pain of partial dependency and coming to terms with it you when you’re chronically ill (none of us choose dependency as option one. We didn’t consciously ask to be ill or unhealthy. And while we find ways to adapt and make peace with it because health is wealth, look at lessons and opportunities to evolve, it isn’t an easy process. Being sick is hard even if we figure out ways to make it slightly more tolerable. It isn’t easy knowing your strengths, your capability, your personality and attitude, your education, your drive and passion and then having to accept some amount of dependency due to physical limitations/dis(abilities). Do not get me wrong – I don’t regret having made certain choices and decisions, all I’m saying is that these were some of the most difficult and brave decisions I’ve made in favour of my health and I’m glad I did. I don’t know where I’d have been today had I not followed my guidance, despite all the external resistance. Just because something is right for you, doesn’t mean that it will be comfortable to come to terms with. However, you feel at peace deep within knowing you’ve honoured your health/stood up for yourself) came up for me through a rather time-wise unexpected, but intuitively anticipated news.

I won’t say anymore.

For now, I just need to be present and allow these emotions to run through me. It’s okay to have all kinds of ‘feels’ and feel ridiculously uncomfortable sometimes. Trust the process even if it seems unbearable for there is light within you and at the end of the tunnel. Feeling is being human, feeling is being alive. Let yourself have the time to process/work through emotions and once you’re ready, stand up, show up and take necessary actions to move forward.

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Be here today, be here NOW

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.

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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

❤︎