#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.

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.

Small Steps.

When I think about all the things I have to figure out now that I’m working on ODAAT, I wonder if I might have taken up too big of a project for my body to handle at this point in time – one slipped disc was painful enough and now I am adapting myself to manage two at the same time, which is naturally taking a lot out of me. I have to be even more patient with my body today than I have ever needed to be. I had a choice that day, when I finally made up my mind that I’m doing to go this – I wasn’t sure if I should wait till my back feels better or go ahead with it anyway and see how things come along. I decided the latter was what I waned to do – take a step forward and let things unfold.

If I were to look at everything all at once, it can scare the crap out of me sometimes. Really. Fear and worry start to kick in and everything starts to look more and more uncertain and that’s where the downward spiral begins. But, when I break that one big objective  (like the completion of ODAAT) down into smaller, more achievable steps, and continue to be honest with myself about the pain level and what I can handle, it all seems easier. For most of us with rare illness, it is the physical aspect (which can cause a lot of mental and emotional distress) that tends to slow us down or hold us back from things we might want to do and that’s been something I have been dealing with for sometime now. In fact, with my latest back injury, everything has become even slower than normal (my) and I’m just building myself up to what is needed out of me right now. It’s been tiring! But I’m learning. It feels like I’ve done this before, except, I’m doing it with more knowledge (well, and more pain) about myself. It made me very sad initially ,but now that I see this as part of my life I must accept for now, I’m able to hold my head up and keep moving forward.

One step at a time…

I don’t have a detailed plan that I must stick with at the moment but I do have a new, fresh perspective of looking at plans and what we can or can’t control. I used to be someone who just couldn’t work without a plan, but that side of me  had to evolve and change along with my body ,and come to terms with my current reality. It has taken me a while to get here, and I can say now that I don’t put all my energy into planning every little thing as much as I used to before and guess what, that seems to be working for me! From a point where I thought health would be the last thing I’d need to worry about in life, it has become that one (and possibly the main) thing which encourages me to do or not do something.

It can requires some conscious effort on my part to bring myself back to today, and save my energy for today. I’ve seen that this approach has been helping me in ways not everyone can see, and I’ve also noticed that the moment I find myself worrying too much into the future or stressing myself over not knowing enough, it gets very taxing on my body.  Let’s just say, I’m more open to not having answers and I’ve started to think that as long as I continue to do what I can (this doesn’t mean push my body too hard that it fails on me or follow what I “should” be doing according to others) in this very moment, things in the future will find a way.

Bringing ourselves back to today and being true to our body can seem like a challenge if we are surrounded by people who might have a different way of handling certain things (which don’t work for us anymore), or when we are  around  otherwise healthy and ‘hardy’ people who don’t have such needs. This is our journey and it’s for us to figure out how we wish to live through it. The unfortunate truth that I’m learning to accept as I grow with this painful illness is that even if someone really deeply cares about us, it doesn’t mean they’ll understand why we are where we are at or what is really happening inside of us.  The more we try to make someone else understand something they just can’t relate with, the more we lose out on what we can do for ourselves with that time and energy. Of course, there will be always some people who are able relate with us beautifully, and those are the kind people we must look out for.

 All of the above said, it’s not as if don’t plan at all – I still own a planner and I love to sit with it and mark out my days and plan my activities. The difference is that these days when I plan, I’m more aware of what my body has to say. I take that into serious consideration and make flexible plans,which, I review every couple of weeks to see what needs to change. The idea this time is really to team up with my body; not to go against it in any way. Even though there are some important things I need to take care of in the next couple of months, I’m looking at it one day at a time and checking-in with myself as to whether I am doing what I can about it. And as long as I am convinced that I am, there is no hurry, no race to win, no finishing line, no where to go except just be here today. It’s fine if anyone else thinks otherwise.

From where I started off with ODAAT, I’ve had to review my plan about four times and I’m open to it changing even more if it has anything to do with how I’m doing in terms of my health. As I continue to develop ODAAT, I must keep telling myself to take each day as a new day and see what comes about.

Small steps.

Baby steps.