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.
Hello. Meet my Left Shoulder. It decided one fine day, about 5 years back, that I needed to stop. That I needed to breathe and let go. And that I had to be there for myself before anyone else. It is this shoulder, my left shoulder, which took me from being in Design class at 6:00pm one evening to an MRI machine at 9:00am next morning. It is this shoulder that first gave me a signal that my body wasn’t doing fine. That I really needed time for myself. I fought to be fixed. I fought really hard. But my body continued to weaken. There were more joints lined up after my left shoulder and I had no clue. I really didn’t know better. That’s where this journey began, in the midst of not knowing. This journey to come home to my own body. To be okay with where I am, to know that it’s okay if things looked different from how I once thought they would be. To learn that different doesn’t mean bad. It simply means different. Different can mean better; just not the same. To know that strength comes only from within. To be alright with emotions. To be okay with falling, and to stand up again stronger. This journey has opened me up to a new world. A world where nothing is more important than health. A world of love and acceptance. Of the body, no matter how wobbly it is. Not matter now unstable it can be. To be grateful for it, not because it could be worse, but because it isn’t. To know that pain and suffering is real but not feel defeated by any of it. To realize that sometimes we are where we are for a reason and to dig deeper into that reason so that one day when we look back, we see how much we have learnt. How much we have grown. To live in the present moment, focus on things we have control over and things that can be changed. And to come to terms with things that we can’t fix. To be okay with limitations and to think about possibilities. To wake up everyday and smile. To keep moving forward one step at a time. To look back once in a while, not at how things were supposed to be, but to see how far we’ve come. And see that we still have it in us to continue. To be our own inspiration.
OKAY. I still don’t feel all that well. I still feel mentally drained out.
You know how it is like when you have exams? The actual exam period obviously gets very stressful, but once you’re done with your final paper, you still take a few days to recover from the exhaustion you experienced during and before exams.
I’ve been feeling like that somewhat. The post-exam fatigue.
I stayed up quite a bit last two weeks because my body was in a lot of pain AND because my brain had lots of things to sort out. A few things happened last week that completely zapped my energy away. I mean, dealing with pain in the body is one thing and when coupled with something emotionally or mentally triggering, I’m just left too charged up for anything else. It then takes me about a week after that to really regain all the energy and finally come back to my routine. My body requires EVEN more care and patience when I feel this way. But it’s during these times that my attention also shifts to my mind and heart. I tend to give more importance to how I think, how I feel.. my thoughts and my emotions, and not just the physical pain that I experience.
It’s these times when I see what it is like to really be human. Experiencing physical pain makes me feel alive enough I think, but to experience all kinds of emotions and thoughts together with that is a different story altogether. That’s being human, that’s being more alive than ever. I don’t hide away from these things now. I think it requires some amount of courage to look straight at your thoughts and emotions and to figure them out, one by one, with patience and care. Just like my body needs my time, my mind and heart need my time as well. I’ve taken a while to understand this.
I gave myself this week to recover, to work through things slowly, without any kind of rush. Clearly, I’m not there yet. It’s Thursday already, but I require more rest. So even if I take a few more days to start feeling normal, that’s okay. I’ve been totally off routine this week – I haven’t been able to go for Pilates, go into the pool as much or even walk like usual. Things are sort or and sort of not going according to my goals for this week. My main goal this week was to recover, which is happening slowly. But everything else.. not really.
It is also during such times that I have to be honest with people around me and tell them I’m not in a state to deal with anything new. If I need to, I make sure to tell people that I’ll catch up with them when I’m better. I simply can’t take in more information from anyone else when I have so much to sort out internally for myself. Since young I’ve had a tendency to listen to other people’s problems and to help them out – but these days I need to put myself before anyone else.
I’ve noticed what helps me feel better (other than sitting with myself) during such times is talking to complete strangers about something totally unrelated and light, or spending time with people who know that I take my time through things. I have my own way of processing thoughts and emotions, and I don’t appreciate being rushed through this. For a moment I may feel like dancing on “Desi Look” or “Chittiyan Kalaiyan”, and the next moment, I may want to run to my room to calm myself down or cry my heart out. Having this sort of a freedom is so important to me now!
There is a general pattern to how I function and I’m okay with it – I feel like crap, I let myself feel like crap, I work myself out of the crap and I don’t feel like crap anymore :) So right now I’m some where between working myself out of the crap and not feeling like crap.
I allow myself feel what I need to feel, I look at my thoughts and keep the healthy ones, and then I slowly bring my focus back to present, back to where I am and where I’m headed. Sometimes this takes longer than usual. But so what?
Just a couple of weeks back I got a chance to wear a saree after ages . I’m not sure what it is with me and sarees but I have a thing for them. I’m yet to figure this out :) I think I was fascinated about wearing sarees (since 13 or so!)way more than being able to drink, drive, party or anything else people are generally excited about around that age.
Being in Singapore, you don’t always get a chance to wear all your beautiful Indian clothes which are otherwise just catching dust. I have always liked wearing Indian clothes so there were times I would just imagine an occasion for myself and wear kurtis and patiallas to Design School, or be the only 17-year-old wearing a black and turquoise saree at a New Year’s Party.
I thought Arijit Singh’s concert was pretty decent an occasion for a saree! It seems it was also the Rare Diseases Day. I didn’t know about this till the next morning, but it was surely a big enough reason to wear what felt good. I chose to not wear a sling that day – I let myself do this sometimes. Only SOMETIMES. So when I do make a choice like this, I am usually prepared in other ways — 1. I had taken extra pain medication, not just for my shoulder but because the night before I couldn’t get a decent sleep and that made my lower-back feel worse. 2. I had spent the earlier part of the day being even more kind to my right shoulder, lower-back and knees, and 3. I was out with friends who knew my condition a bit better than the rest, and that always helps.
With a lovely golden blouse, an elegant black saree, matching earrings and accessories, I think I looked like a perfectly normal young lady on the outside. The truth is, all the not-so-normal things were underneath my saree giving me the right kind of support I needed for that night. And no one even knew!
I wore my Hush Puppies Body Shoe. All I can say about them is that they’re really ugly but useful. They are not anti-slip, which is scary, but they’re so amazingly comfortable to walk in. I threw away the black pair just a few days back so I had to wear the brown ones. And of course, my knee guards! There is no being out at a concert (or anywhere) without them!
On the days I need to be out of the house for longer or make sure I don’t need to be carried around by someone, I must have proper footwear. I need shoes which provide me with right kind of support for my high-arches. I need shoes which give my feet enough cushioning so that my lower-back doesn’t cry in pain later. And, if I want to reduce the chances of my kneecaps dislocating even by a small percentage, I’ve got to have my knee guards on. It’s not as if I feel no pain just by wearing Orthopaedic shoes and knee guards, but it’s just that if I didn’t do these things, managing my pain later gets almost close to impossible. I have gradually become okay with the need to wear ugly shoes (sometimes!) with a saree or black knee guards with a short skirt.
About six months back, I threw away my entire collection of heels – right down the chute, one pair at a time. I used to love wearing heels! I could even dance in them easily if I felt like it. I cried quite a bit that day because it was a massive step forward. I really cried a lot. I let myself cry a lot. I think it’s natural to feel sad each time you have to let go of a part of your past – it’s like giving away a piece of yourself or your old self. I had those shoes in my wardrobe for far too long! I was holding onto the hope that someday, I’ll be able to walk in heels again. Sure, someday I might be able to! But that someday isn’t today. Or tomorrow. Or anytime soon. I realized I was only making things difficult for myself. I wasn’t letting myself accept my changing body and my new needs. I had to let go of those shoes so I could let go of memories that were holding me back. And I did.
The next day I woke up feeling lighter and emptier in a good way. I still felt a sad. But it felt like I had more space in my heart for something new. Anything new.
I had the most amazing time at the concert, even though I was wearing ugly brown shoes that didn’t match my saree at all. I don’t think it even matters that much to me anymore. I’m not always wearing shoes that don’t go with my clothes, but when I have to, I try not to let that drag me back into the past. Really, if it weren’t for these ugly but useful shoes, I wouldn’t have been able to enjoy the concert as much. I got a chance to wear a saree, take lots of photos, watch Arijit Singh perform live and have a nice dinner with a group of close friends after that. I think that was enough for me to say that I had a brilliant day! I had to deal with extra pain later but that’s okay – that’s just how it is usually. It takes me a couple of days to recover from being out at such events.
Slowly but steadily, I’m starting to let myself be what I am right now. It’s not as if I don’t feel bad when I have to pick unattractive Orthopaedic shoes over gorgeous high-heels or make any such choices, but I surely don’t hate myself for having to make these choices. The times I feel upset about these things, I just let myself be upset for a bit. After a while, I come back to respecting the fact that I have a rare body with really rare needs.