Story – My Tape Story

Twenty years

December 28, 2017December 31, 2017 Manasi Dalvi1 Comment

I am filled with so much love and gratitude for this place, it’s hard to even express. And despite the fact that the positive emotions I feel for this place almost equal the negative memories I am still working on letting go, my heart aches knowing that I am leaving a place I called home for the last twenty years.

I made mistakes here.

I experienced pain and suffering here. I was young and naive.

I made friends here. Real friends I’m so grateful to have come across.

I fell in love here.

I spent sleepless nights here. Crying, laughing, secretly believing in fairytales.

I made promises here.

I saw dreams here.

I set goals and achieved them here.

I was betrayed here. By near and dear ones, and by strangers.

I learned to protect myself here.

I was diagnosed here.

I fell apart here. Completely shattered into tiny pieces, I couldn’t myself anymore anymore.

I put back myself back together here.

I faced my very own demons, alone, right here.

I learned to trust again here. Myself and people.

I found my medical team here. My support system, without whom I couldn’t have come this far.

I dared to recreate dreams here.

I learned the art of letting go, here.

I finally found my true voice here.

I learned to speak my truth here and encouraged others to do the same.

I learned to be of support and service to the world, right here too.

I came across my tribe, people like me, right here.

I felt safe here.

This is where I wilted and learned to bloom again. This is where I learned to own my story, fully and wholly.

While I can’t lie that recreating a similar lifestyle and routine else where is going to take time and more patience than ever before, I do genuinely believe that it’s not entirely impossible. Somewhere I trust that the process of wilting and blooming over and over again has equipped me with the ability to deal with uncertainties of all kinds and be okay with not knowing.

You know that feeling when you look back and think perhaps everything happened to prepare you for something that is yet to happen? That’s kind of how I feel right now. As if I have levelled up in this game called life and now need to put my skills and tools to use in order to handle the next level; the next phase. There’s a lot I still don’t know but perhaps I am able to find peace in knowing that I have made it through incredibly painful times before and probably can do so in the future too.

Singapore, thank you for all the blessings and lessons.

August 2, 2017August 4, 2017 Manasi DalviLeave a comment

If you have a story, write. If you have a story that changed you for the better, write for sure. Because when you do, you heal and create a safe space for others to heal.

There can never be enough stories of struggle and harsh realities which lead to strength, courage and acceptance.

Don't let your story confine you.
Let it become a catalyst for your growth, your ability to adapt + respond and your enthusiasm for life.

Love,
MD

Paddle Boat

November 14, 2016November 15, 2016 Manasi DalviLeave a comment

Let me tell you a short story about yesterday.

So I left home with a friend, expecting to go to a flea market and be back home within two hours. The flea market turned out rather pathetic so we landed up in this adorable cafe and had traditional Chinese milk tea + an almond cake. Then, since I was extremely excited about finally being out (not a medical appointment for once) after my flight back from India took a toll on me, I thought I could handle a couple more hours of staying out. We decided to go this beautiful place and sit by the water and think about life.

What happened next was totally unexpected and impulsive – instead of just sitting by the water, we went on a paddle boat for an hour. At this point, I must tell you that I love water (I think it has some healing effect on me) and I’ve always enjoyed water sports as a child. Just about seven years ago, I was close to getting a kayaking license and was looking forward to kayaking to some nearby island.

Okay, back to the present – some memories came flooding in and I was surprised that none of them made me sad or upset. Past is gone for a reason and my reason here (health) is of immense value, something most chronically ill people understand. I realized that paddle boating was probably the closest I was goinh to get to any form of water sports now so why not just give it a shot?

The seats didn’t exactly look comfortable and were clearly at an angle that’s bad for my back. The paddles too, were located at an angle not quite right for my knees but even then… I wanted to give it a shot. I trusted my friend to take over when I needed a break so we hopped onto the paddle boat and went paddling away.

Well, we had a blast. We literally blasted Bollywood songs and laughed our heads off. Unfortunately, the winds were pretty strong and the waves were kind of harsh so we needed to be towed back after our time was up. I was kind of tired anyway so I’m glad we got a quick ride back.

So today, I woke up with noticeably high pain levels and extreme tightness in my lower back. It’s a challenge to walk around the house and I had to cancel Pilates just to stay in and rest my inflamed lower body. My calves, hamstrings and glutes really did a lot of work last evening. You might think that’s good, but trust me, this isn’t your after-workout-feel-good-and-sexy kind of pain I’m talking about.

Anyway, to conclude my little story. I’m super happy that I attempted something new. Something from my past but not quite. Something more present. And, I realized that it’s something that didn’t quite work for me – which is fine because I’ve got more information about my limitations. So do I regret getting on it? Yes and no. Yes, because dude pain is never fun. And no, because a part of me would’ve continuously longed for that experience and the sheer possibility of it perhaps not hurting me would’ve bothered the shit out of me.

Now I know better and next time, I’m taking one more person along with me so I can rest and the other two can paddle. Royal treatment? Sure, that’s better than being royally screwed (by pain) later.

Love,

Manasi

December 31, 2015December 31, 2015 Manasi DalviLeave a comment

Ending my last Pilates session of #2015 with my instructor of two.five years, @oneknee😎

I was more regular with my sessions than I have ever been and that makes me feel really good. Even a tiny bit of improvement in the muscle tone makes me feel happy because I like to believe that my body is responding to how I look after it. Perhaps the #progress isn’t as much as I was wishing it would be but again, if how I looked was the gauge to the progress (and the kind of progress) I’ve made, it’s not going to be accurate at all.

With patience, understanding and support from just a few people, and with my personal effort, commitment and love towards my body, I’ve made progress on all levels – physical, emotional, mental and spiritual. This year, I’ve got another joint (that’s a grand total 9 joints affected) to worry about but I’m less fearful and more trusting of my body and its experience. I’m more accepting towards my constantly changing body because I realize that it is a physical manifestation of the experience I’ve had or am having. I see how just dealing with an illness is not enough – one needs to work on healing and growing with the illness too.

#2015 has opened me to so many #possibilities – ones which I was either afraid to consider or didn’t even know existed. Today, I understand that even if my life looks nothing like before, it looks fine. It doesn’t look bad. I had a chance to question what I really want out of life and though my goals and #dreams are still just evolving (re-evolving), I feel certain about the years to come. 2015 has given me the #opportunity to come to terms with my past, remember the lessons and grow from that place. We are nothing without our #story and there’s no reason to hide it. I can now look back, acknowledge what was and that this illness is a crucial part of my growth,and, continue writing a new ending.

Thank you to all those who’ve stood by me and have been a part of my #journe, and most importantly, thank you for giving me space to just simply have my experience. One Day At A Time.
Happy New Year’s Eve!✨

Embrace.

October 30, 2015November 1, 2015 Manasi DalviLeave a comment

Embrace yourself.

The whole of you. From head to toe.From skin to core. Every little scar, every little mark. Embrace every part that you think is too fat or too skinny. Every area that you’d rather cover, and every area you want to flaunt. Embrace the extra weight that you’ve put on or the weight you simply can’t gain. Embrace the ability for your body to change, and the truth that it has. Embrace everything that’s on and in your body, for it reflects the journey you’ve had, and the journey you are on.

•••

Embrace every little flaw that you think is a flaw – the bumps, the curves, the blemishes, the dimples or the moles. The thigh gap or the lack of one. Embrace every single dislocated joint, every set of horribly painful muscles. Embrace the faulty collagen that once made you feel at fault. Embrace the complexity of the cells that form you. Embrace the simplicity of your breath. Embrace every weakness, every strength that you have within you. Embrace the limitations, for that’s the first step towards working with your body and finding opportunities. Embrace your emotional, mental, physical and spiritual self because they make you the you that you are and the you that you’re about to become.

•••
Embrace your experience – it has torn you down into pieces, ripped all the courage out of you and built you up into a strong and beautiful person that you are. Embrace the conscious and the subconscious story you’ve written so far. Embrace all that you are creating from here on. Embrace every fragmented part of you that needs a safe spot to come together and bloom again. Embrace those cracks in your heart, those holes in your soul. Embrace that part of you which still needs to develop, learn and grow. Embrace the power within you to do all of it. Embrace the fear, the guilt, the despair and the grief that you have overcome. Embrace all that is still left to overcome. Embrace each of those disturbingly dark emotions that you feel, for that is where the alchemy begins. Embrace your deeper need to heal, for that is how the world starts to heal. One person at a time. Embrace your need for boundaries and personal space. Embrace your need for valuable connections and healthy relationships. Embrace your need to be what you want to be, and not what the world wants you to be. Embrace the disorder in your, the clutter, the chaos – it is what makes you human. Embrace all of it.

•••

Embrace your skills, your talents, your passion and your drive to keep moving forward. Embrace your need to go slow. Embrace your ability to know. Embrace the possibility to be lost, for you won’t always have the answers. Embrace the fact that you are unique, that you are different – like everyone else, and yet not. Embrace the sensitive being that you are. Embrace the truth that you feel more. Embrace the light and the shadow within you. Embrace the love and the pain that fills you up every single day. Embrace all the muddle and the uncertainty that you face, for each of us feels this way at some point. Embrace all that you are and all that you are not. Embrace your reality, your story and your dreams.

Embrace the perfectly imperfect and glorious mess that you are!

❤︎

My RARE Patient Story Is Finally Up!

April 23, 2015April 30, 2015 Manasi DalviLeave a comment

I wrote in my personal story for Global Genes sometime early March. I just received an email saying that it has finally been published! I understand it can sound a little bit repetitive for those who’ve really followed through the story of my diagnosis. In that case, here’s a summary of it anyway. Hahaha.

https://globalgenes.org/raredaily/recognizing-ehlers-danlos-the-diagnosis-made-everything-fall-into-place/