December 2017 – My Tape Story

Dear 2018

December 31, 2017January 1, 2018 Manasi DalviLeave a comment

Dear 2018,

2017 was intense.

From six months of being bed ridden (due to serious back flare) and recurrent shoulder subluxations, to major dietary restrictions (to heal SIBO) and weight fluctuation, to debilitating pain and cysts in my body (I’ve lost count of the number of tests, scans and treatment phases I went through in total), 2017 forced me to look at my body with even more compassion and love. There’s no doubt that I’ve come a long way in terms of acceptance and creating a lifestyle that honours my body but I can sense that 2018 will need me to up my game.

2017 gave me the opportunity to share my creative passion with others and encourage them to express themselves through creative work. I came across like-minded people who were also on a personal journey of growth and healing. 2017 allowed me to use my strengths and to be of service to those in need.

The second half showed me once again that while there are things out there I have absolutely no control over, I do have control over how I respond to my experience and how I co-create with life.

Despite feeling tremendously weak physically, I have felt the strongest both mentally and emotionally. Thank you,2017, for all the blessings and lessons. Thank you for showing me who I can truly count on.

2018, I am ready for you.

Please let the good days be great and the not-so-good ones okay. Please let the upcoming transition be easy on my mind and body. Remind me to stand in my truth and show up for myself. Please be abundant in every way possible. Let me continue to find love, support and guidance at the right time and place, and, let me remember that the light in me always knows what to do next.

Thank you,

Manasi D

Label?

December 30, 2017January 4, 2018 Manasi DalviLeave a comment

My first major symptom showed up just a few months before I turned 18. Before that, I was dealing with some minor symptoms which we assumed were rather normal for a relatively sickly child with a not-so-strong immune system and assumed that my frequent spraining of ankles and injuring ligaments was probably because of my passion for dance.

Five years of internal resistance (18-22) + pushing my body in every way possible, 3 injections, a total of 20-30 doctors/physiotherapists, 1 open-surgery and a couple of minimally invasive surgeries later I was finally diagnosed with EDS Type 3 — a label that has since been attached to my name.

There was a major confusion about the terms “EDS Type 3” and “Hypermobility Syndrome” (and now we have hEDS) but I knew life wasn’t going to look the same, no matter what the world wanted to refer to this condition as. I remember knowing deep in my core, that life was at a major turning point and there was no going back. I felt so relieved when my day to day experience was validated and that for once, I wasn’t “too young to have pain”. At that time, having a label that summed up my experience, a logical reasoning behind my suffering mattered so much and that attitude helped me pave my way towards getting a diagnosis.

Sometimes when I look back, I believe everything had to unfold the way it did in order to bring me where I am today. I wouldn’t have been here had I not trusted a part of me that just knew something was off balance; that my body needed more of my attention. That persistency was necessary to find a label to my symptoms. Today, this label helps me in making practical choices towards my health. It helps me when I need to find the right kind of help or seek medical attention. It helps me when when I need to keep up with the changes and advancements in science and technology. However, this label doesn’t change anything for me on a day to day level. It doesn’t change the fact that my body functions in a more complex manner and has very specific needs which must be taken care of.

Of course, while the underlying symptoms of all those dealing with EDS (same type) might be similar, how one experiences these symptoms, the intensity and degree of severity can be vastly unique to each person. I share my symptoms and experience with the world and I’m fully aware that they may look very different for others. There is absolutely no comparison or competition as to who is more sick when the truth is that we are each living in a dysfunctional body which affects our internal and external experience.

I’ve now reached a point where I realise that it isn’t the label that matters as much as your understanding and response towards your illness. It’s YOUR personal, day to day experience and no body else gets to tell you that it’s not true or unreal.

Being honest about my health with myself and those around me has helped me immensely. It’s this transparency that created a space for me to then work towards acceptance. Dealing with an illness that is especially hard for others to wrap their heads around requires even more self-validation and trust. Even now, I have family members, friends and medical professionals who find it rather challenging to make sense of this illness. The question really is whether you can trust your experience rather than seek external validation.

Of course, we would need and hope that a few people try and understand what’s happening to us but we also need to realise that it is impossible for anyone to get it until they get it. I’ve realized that the more I understand my body and become aware of it,

1. The more I’m able to verbalise and communicate my experience

2. The less I need anyone else to fully understand it

What I do need and look for instead is for those around me to let me have my experience, give me the space I require, without rushing the process. To me, it’s more important that my loved ones understand that I am having a hard time and that I am in pain (or that they ask me how I’m doing or if I need help with something) rather than be able to fully relate to every little thing that’s happening to me. Honestly, It’s pretty difficult for someone outside my body to relate to it and accepting this fact makes it easier on me. It also takes some stress off others to try and make sense of an experience that isn’t even theirs to begin with!

Whether you have a condition that is medically ‘named’ or you’re still struggling to find a diagnosis, please continue to trust your body and its subtle messages. Often times, our bodies are much wiser than our minds.

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.