Look back…

If you ever forget how strong you are, pause for a moment and look back – look at all the times you fell and stood up, not just stronger but courageous enough to try over and over again. Look back at the times you could have shut yourself to love and pain, and built a wall around your heart, but you chose to remain soft and let light in anyway. Look at the times you showed up; for people and yourself. Your story makes only a part of you, and the lessons your learn and how you evolve, make up the rest of you. Ask yourself, “how has my story changed me for the better?” If ever you doubt your strength, your ability to love, your discernment and authenticity to walk your own path, look back… look back and see how far you’ve come. It’ll make it easier to continue moving ahead if you realise how unstoppable you’ve been up till now.

 

 

#strength #soft #courage #grow #love #acceptance #life #chronicillness #relationships #chronicillnesswarrior #ehlersdanlossyndrome #hypermobility #friendship #pain #suffering #family #illness #rare #light #journey #pause #unstoppable #keepgoing #faith #trust

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#2013

It’s been four years since this photo and yet I get goosebumps just thinking about where I was at, both physically and mentally.

I was falling #sick with a cold or a stomach flu every other week, reacting to medicines which were supposed to help, afraid to be alone in my own bedroom, finding it hard to eat, needing help to wash my hair and sometimes even to brush my teeth, hating on my body for being fragile and weak, struggling to protect myself from people, fighting with school because they had no policies in place for people with medical issues, crying myself to bed every night, falling asleep with a strange emptiness in my #heart, waking up to feeling suffocated, hating on my creativity because I couldn’t pursue it the way I wanted to, feeling like every day was an absolute drag… I was claustrophobic in my own #body and #mind.

I wonder if this photo says any of that.

2013 was the year I knew I was done with everyone and everything around, including myself. Something needed to shift and I didn’t know what or how. All I knew was that life couldn’t possibly feel the way it did. Despite feeling like a hostage to my own #existence, there was a glimmer of #hope, a constant knowing that nothing was going to change until I decided to step up to where #life was heading. Stepping up at that point meant pausing and for once allowing myself to let it all sink in. Nothing was going to be anything like I had once imagined and I had to come to terms with that. I couldn’t distract or push myself anymore and I felt horrible. Who thinks about pausing/stopping at 23, right?

The thing is, some of us reach a point in our lives when we are faced with circumstances so real we simply can’t look away from them. Greater things are at play and our personal plans and effort make no sense. Life keeps finding ways to force us to look at what’s being presented and leaves us with two choices – to keep #suffering by avoiding pain OR to acknowledge pain and learn to #rise from there. #trust #acceptance #health #mentalhealth #pause #rest #recover

Looking back, I suppose there were things I had in 2013 which lead me to be where I’m at today. The daily struggle and fight have definitely added to all that I have become as a person and in some ways I’m grateful for it (not for the fight but for what came out of it). Of course, gratitude seemed like the last thing on my mind at that point in time because I was in this terribly dark space. Practicing and expressing gratitude, learning to accept whole and broken parts of me and making choices that honour my health (both mental + physical) has taken time and conscious work. I still have rough days but I’ve made peace with the fact that harder days are part and parcel of learning to live with a chronic illness. Today, I know better than ever before that while life is capable of giving you 5 reasons to fear, hate, complain, it will give you at least three reasons to trust, love and grow.

You can be kind and assertive at the same time 💗Say no when that’s exactly what you want to say. Also, ask yourself who you’d like to explain yourself to and who you can do without having to.

#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?

What it’s like being single with a chronic illness

(What it’s like being single with a chronic illness)

Every once in a while I come across someone or the other who would ask me questions like:

“Why are you still single?!”

“Have you seen yourself?!? You can find anyone! Just go out! Go online! Why do you want to be alone? ” (that’s really beyond the point)

“How are you managing without a partner?”

“Isn’t it better to have someone around at least?”

“Don’t you get bored alone?” (I honestly don’t)

“Don’t you want someone to help you get out of bed?”

“Why don’t you just go out and see what comes to you!?”

Here’s the thing about dating and chronic illnsss – it’s not straight-forward. It’s not ONLY about feelings and love anymore. Living with pain 24/7 and dealing with an illness that’s going to be with you for the rest of your life (well, till science finds a solution or a miracle takes place) changes your perspective about pretty much everything. Every day is a new day and life is as predictably unpredictable as it can get.

What is considered rather “straight-forward” in the context of dating now involves much more complicated factors like compatibility in terms of lifestyle and practicality of the relationship. Often, these are also the topics people prefer not to discuss in detail — who wants to talk about how it is like to wake up and sleep with so much pain?

Who likes to talk about guards, slings and tapes?

Who wants to run through your pain management programme?

Who wants to know what it’s like to have to take a break during showers because of fatigue?

Who wants to discuss how to deal with an arm that sublaxes? Or what to do when your back flares up and gets you bed-ridden? Who wants to listen to your prognosis?

Who actually wants to educate themselves about someone else’s health?

Who wants to know what it’s like to make a different career choice not because you are incapable, lazy or not ambitious but because your health must be your priority? (I believe it’s a choice I’ve made for my health not because of it)

Who wants to know what it’s like to pretty much build a life all over again from scratch?

Who wants to understand what it’s like to be hopeful, grateful and practical at the same time?

Who’s willing to talk about responsibilities? Partnership? Who wants to talk about hospitals, bills, insurance and disability aid when there are so many other fun things to discuss? Right?!

Who’s willing to see what an invisible illness really looks like?

And most importantly, who’s going to be able to look past that illness, despite it being a major experience for you, and realise that it’s just one aspect of who you are?

Unfortunately, the things that people usually shy away from are exactly the things that need to be talked about. That’s the case with all of us but even more so when you’re dating someone with a body that doesn’t function as per “normal”.

From the last so many years of literally dating myself, hating my body (for a while) and now respecting it so much has taught me such valuable lessons which I wouldn’t exchange for anything. I’m very happy that I chose to give ‘me’ all the time I deserved. Somewhere I had forgotten how much I needed it.

There’s no going back for me anymore. I don’t regret choosing to date myself. I don’t regret deciding that it was time to be on my own and manage with whatever support I had and to make the best out of it. It was painful, every bit of it and yet I say this – i absolutely don’t regret experiencing loneliness and realising how amazingly freeing it actually is. It has brought me closer to who I am as a person, who I always was and has opened doors to so many opportunities.

I couldn’t quite have imagined sharing my story  with everyone and being of help to some people had I let things happen the way the old me thought they were “supposed to be”. I wouldn’t have been here feeling somewhat at peace with everything. I wouldn’t have been able to grow out of fear, trust myself and be grateful for all that I have without leaving a few things behind.

Dating myself for years altogether has only taught me patience (what’s an empowered patient without patience anyway?) and the need for acceptance of self. If I hadn’t learned to accept who I was becoming, I wouldn’t have become so clear about my wants and needs. If I hadn’t learnt to let go of the things that no longer served me, I wouldn’t have been able to embrace my new reality. I most definitely wouldn’t have been able to create space for anyone else in my life.

I couldn’t have imagined having someone else with me through the last few years. I don’t think it would have proven to be helpful for either of us. In some ways, I’m grateful that I spent those years alone, figuring so many things out all at once. Now that I have enough space to embrace who I am, I have enough space for someone else too. Keeping that in mind, no matter how sad it can sound to some people, my full-time job will always be self-care and I can’t be with someone who wouldn’t see that.

It’s really ok to be single and deal with a chronic illness AND it is ok to be sick and be in a perfectly healthy relationship. What matters ultimately is whether you get to honour your health.

Love,

MD

❤️

(What it’s like being single with a chronic illness)
Read the article on themighty.com

#throwback to December 2012

This is me just four years back (4/9 joints down) – a point in my life I would never want to go back to, even if someone paid me a million dollars for it.

I had received a diagnosis just two months before this photo was taken. My parents’ divorce was at its peak and there was so much uncalled for responsibility around it. My career and life plans were falling apart. My boyfriend of 5 years and I were going through a very painful break-up. I was popping 8 painkillers a day + 6 muscle relaxants + non-addictive sleeping pill and yet finding no relief. I had migraines which drove me mad and there was this annoying, buzzing noise at the back of my brain which just never stopped.

I couldn’t close my eyes or be alone in a room because I feared my body might fail me in some way. I rarely slept and if I did, I got nightmares and I’d wake up drenched in sweat. At times I was afraid I’d never wake up. I had palpitations and sudden fall in blood-pressure a number of times in a day. I would lose balance as I walked. I couldn’t wash my own hair or even dress myself. The creative inside me was no where to be found. My body needed energy and I couldn’t eat. I was hospitalized a few times because I started reacting to some medicines.

I only got weaker.

I was trying to hold onto my life, every bit of it, and the harder I tried, the more defeated I felt. My body was screaming at me and I didn’t listen. People around me wanted things out of me that I simply couldn’t give. I needed myself more than anyone else and I kept putting everyone else before me.

There was nothing familiar left about me or my surrounding. I didn’t trust my body and I didn’t trust anyone else either. The fighter in me could no longer fight. I thought I knew what strength was all about but I clearly didn’t.

I needed to let go.

And after what seemed like eons,

I finally started learning to let go,

to accept what can’t be changed,

and to work with my body.

There is more to learn + create,

but right here today,

It’s all okay.

#Loveofallkinds


Love, because how else do you open doors to growth, happiness and peace?

Love, because how else do you become a more refined version of yourself?

Love, because how else do you learn to become more available for others and yourself?

Love, because how long can you possibly guard your fragile heart and remain surrendered to fear?

Love, because true strength lies in being vulnerable and being soft – with yourself and others.

Love, because even if there’s a risk of heartbreak and pain, there are rewards far more valuable than those transient waves of sadness.

Love, because when you choose love, you choose life.

#love #loveofallkinds

February 14, 2016 

It doesn’t matter if you’re single or in a relationship, there is always (always) an opportunity to pause, breathe and remind yourself that you are your own first before you can be someone else’s.

If you’re single and haven’t met the love of your life yet, the best part is – you still have enough time to start practicing self-acceptance and self-love, to complete yourself first before trying to complete someone else or having someone else complete you. To become comfortable being alone with yourself first, so you can deeply enjoy the moments of togetherness with someone else. You have all the time in this world to learn how to be gentle and patient with yourself. Practicing self-love gives you an opportunity to celebrate a day of love, every day of the year. Putting yourself first is not selfish; it is necessary – to cultivate a healthy relationship with your own mind and body, and with your loved ones.

If you’re in a relationship, it’s only healthy, if not even more necessary, to find some time with yourself. Whether that’s to sit in peace with yourself , to do things you love or to simply validate yourself for being who you are; regardless of the validation you may receive from someone else. Being there for yourself first allows you the emotional, mental and even the physical capacity to be there for those you love even more. There’s no way one can give out of an empty well. Practicing self -love becomes even more important when you’re in a relationship because as you continue to strengthen the bond between your own mind and body, you encourage others to do the same. As you recognize your own needs, you recognize and respect the needs of others. This way, your relationship grows into a beautiful partnership, and you each become an integral part of it. Celebrating a relationship that has its foundation in place becomes a daily practice, not just a once -in- a -year event.

Choose to celebrate love ( of all kinds) every, single (or not) day of your life. Because love is within you, not next to you or no where to nowhere to be found.

#chooselove #practicelove #celebratelove #loveoflkinds #selflove

@mdalvi15

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