Reminding myself to trust the process, accept where I’m at today which isn’t where I was or where I will be permanently, and take it one day at a time through this significantly transformative period of my life. Transitions are never comfortable but I’ve found more strength in learning to ride the waves rather than just waiting/hoping/praying to get to the other point because quite honestly, you never know how long it can take. There are always lessons to learn if you keep your heart and mind open and there is always a chance for you to let go of the old and evolve. Being here in the now and learning to respond to what is is immensely empowering. You are exactly where you need to be.

Love, Md

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#marathimuli

After more than two weeks of thinking through whether I wanted to or if I was even in the mood to host a mini Ganesh Chaturthi dinner, I finally figured I had to do it this time. I got a couple of messages from friends who were looking forward to it and I knew it wasn’t going to be like last year. This time round,  everything was going to be different.

Because it is different.

Things change, times change.

What remained the same as last year was the feeling of love and joy, dressing up & being around a few people and knowing that no matter where life is heading, you’d always have some memories to look back upon and smile. To feel grateful for.

Ultimately, that’s really all I care about when it comes to festivals. If you’re like me, spiritual enough to respect that people get to have their own set of religious beliefs and, you’d agree that if any festival is celebrated with the people who love you and people you love, people who have been there for you and people you’ve been there for, and if you’re present in that moment, do a small ritual and feel immense gratitude, it is more than enough. You get to choose how you want to live your experience.

Amongst all the amazing photos captured that day, these three will always remind me that despite everything,

you have a choice.

To pick a family,

To dream freely,

To hope without fear,

To laugh without guilt,

To cry with your heart,

To love with your mind,

To sing your very own song,

To live with what you have and make the best out of it.

P.S. if you’re wondering what’s happening up there… you know, we were just trying to dance on “raat ke dhaaii baje” and “pinga” for very obvious reasons. Also, did you notice my freakishly bendy fingers?

I’ve had a rough week attempting to function while my arms were simply not functioning. This week, I hope to do more for my arms by doing less in general. I’ve always struggled with slowing down and have come a long way with it… but to slow down further requires effort. It requires being present. I’ve observed that staying more present can change how you experience it and that in itself can be very useful.

To be here 


And today I realized,

I’m quite at peace with where I’m at. 

Of course, there will always be things to work on and move towards,

and every once in a while I will get  overwhelmed with everything that’s going wrong and experience a  meltdown for a while – it’s part of the healing process too.

But to be here,

present in this very moment,

with a fragile body that hurts twenty-four-seven,

and still feel alright deep down

is nothing short of an achievement.

The way things were going,

I didn’t think it was ever possible – this ability to be okay with a disability and exist without too much dependence on someone. 

Nature always does something to me. It gets me thinking (in a good way) and in some ways, brings out the real me in me. 

As I sat there by the water today, looking at the magnificent colours around me,

I knew it was all okay. And going to be okay. 

I was there with my knees swollen but my heart was full of love and gratitude. 

All that I need in this phase of life, I already have. 

A big thank you to all those who are a part of my journey. 

Love,
Manasi

#notsoinvisibleillness

When reality hits you in the most unexpected moment, 

Look. 

Feel. 

Don’t distract. 

Look again. 

Feel again. 

Breathe. 

Let go. 

Breathe again. 

Let go. Again. 

Breathe once again.

Let go. Once again. 

Everything is okay in this very moment. 

You are okay. 

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.

—-

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

❤︎

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And just as you think you’ve got it all under control, everything changes. It turns into a complete mess. Everything falls apart. Your control doesn’t count for anything. Nothing at all. You find yourself standing on an unstable foundation. Uncertainty takes over. You find fear building up inside of you. One bit at a time, every aspect of your life begins to alter. You are forced to evolve and grow. Your story changes. Your goals and aspirations look different. Your priorities are reshuffled. Your relationships are affected. Your truth starts to unfold. You realize you don’t seem to fit in anymore or that you never did. Your plans were just a dream. Your present becomes your reality. Your reality creates more opportunities. You realize that stepping forward requires stepping inwards first. A new set of doors suddenly open for you. You look back and see that some doors remain closed, some people belong in your past and some plans you thought your life depended on, just don’t matter as much anymore. Nothing looks like what you expected it to one day but you know it was meant to happen. Even if you don’t fully understand where it leaves you at, you know it was all for good.
Life continues to take place; every moment, every breath. Stay true, stay present. Stay grateful for what you have now because chances are, life won’t always look the way you thought it would.
❤︎