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Hello there spoonies and other friends!

So while I was off social media, I took some time for myself and made sure I brought my interaction with people to a bare minimum. I met just a few people apart from my pilates instructor, physiotherapist, ayurveda therapist and naturopath but I made sure to look at my phone and laptop less. In fact, I wrote more in my journal and typed less on my phone.

Some of the experiences I had just over this week made me think through a lot about how far I’ve come and how far I’m yet to go. When you really make an effort to disconnect with the noise around you and connect with what is already within, you finally hear the noise within you loud and clear. And if you dig deep enough, and have the courage to dig further, you find that there’s so much wisdom residing in there that you barely ever need to seek answers from outside. A lot of what we need to know, we already do.

So, obviously, I made a list of ten things that came up for me in the course of this one week. I took some time to journal and think through each point even more and I figured I have so much to share and so much to learn at the same time. I wasn’t too sure if I wanted to share this list with everyone but I’ve made up my mind to do it anyway. Who knows, it might resonate with someone out there.

1. Listen more; to your inner wisdom and to those who need to be heard
2. Express more gratitude
3. Have the courage to ASK for your needs to be met
4. Be brave and say ‘NO’ if/when necessary
5. Preserve your energy; it’s everything
6. Reframe your past, refocus on your present and reimagine your future
7. Return to the thoughts of peace, love, health and success
8. Validate yourself for every progress you’ve made
9. Make your own decisions. You know what is best for you.
10. Trust that you will always be supported if you’re willing to jump off the cliff. Keep doing your best and being your best even if you’re at your weakest.

The most important thing I realized was that I NEEDED this time. Unless I make a conscious effort to create a space for myself, I will always be a part of something I don’t need to be a part of. Love, Manasi ❤️ #chronicillness #selfcare

Definitely worth a read. 

https://themighty.com/2017/01/making-choices-with-chronic-disease/

It speaks for most patients with chronic illness/illnesses. 
While a major chunk of dealing with a life-altering illness requires one to make difficult choices on a daily basis, living with chronic illness is NOT “all about choice”. 
I hope you guys take sometime to read this article. 
Thanks!

Recovering from a zombie state 

I feel like a zombie. A zombie who ran a triathlon, won the first position and is now fatigued out of her brain. Wait, do zombies have brains?

Well, here’s the thing. I can’t make sense of how yesterday was – it’s as though I just sat on my bed attempting to read a fiction love-story (I don’t read fiction, by the way), with my new glasses on and the day just went by. I went for Physiotherapy but that’s really it. My brain was numb and heavy and light and cloudy and foggy and misty and messy and everything all the same time. And my body was over-worked, over-drained and over-sensitive. Towards the end of the day, I even started running a slight fever out of nothing but plain tiredness. It was like my body saying, “alright woman now that’s enough.. Stop before I stop you in ways you don’t want to stop.” Except, it didn’t sound  as threatening as I’m making it sound.

I’m still recovering from that intense brainfog and still have a residual disoriented sense of the world around me today. Half of me is still floating brainlessly. Thankfully, it was such an easy day at work today – I had the whole studio to myself and I had done what needed to be done so I survived and even managed to take a couple of pictures – you know, when you’re in the right clothes and in an empty studio, it’s okay!

I also managed to get through a short session of my regular Pilates session today. That makes it 4 short sessions this month and that’s freaking brilliant! I’m starting to get back to my routine slowly but I’m so exhausted it’s even funny. I look back and I wonder, ” how on earth did I manage 2 sessions of Pilates per week, and Physiotherapy, and part-time work, and walk to work and cook for myself and work on some parts of my business before my knee got injured?!?”

No idea. I swear I don’t. Did I actually manage all that?!

Our body is constantly changing and we have to adapt to it. To be very honest, I have to give myself a few months and then review to see if I need to make some changes to my lifestyle again. At the moment, I’m trying and I wish to continue trying. That’s all I know.

Most of us physically fragile people are gifted with a brain that’s very strong and we’re capable of dealing with so much more. I see where there can sometimes be a clash between our mind and body but frankly, the lesser the clash, the less we suffer. The more tuned in we are with out needs, the more tuned in others will be with us too.

I’ve got a very busy next three weeks. My brother’s back this Friday for a short summer break and I also wish to get through work and other not-so-fun stuff. Again, I’m not sure if I can and I have to keep checking in with my body.

Do send me some good vibes and extra spoons because I definitely need them right now and possibly for the next month or so. Though there’s still a longggggggggggg way to go (I’m questioning if there even is a destination), I’m very proud of where I’ve come today. It’s not been an easy journey but I’ve made it here. Just like most of us. With that slightly positive thought in mind, I’m going to get into bed and hope I get a good sleep. I think I’ll be ready for tomorrow.
Love,

MD

Pain and more

After spending close to seven years in all kinds of pain, I often find myself trying to think of the lessons behind the cards I’ve been dealt. I don’t ask any ‘why’ questions anymore, but I do ask a lot ‘what’ questions to myself.

“Why ME?” is the worst question one could ever ask.

“What can I do right now to help myself right now?” is better; more constructive.

Over the last so many years of experiencing such debilitating pain, the amount of awareness that I have around my body has definitely increased and is only increasing. I have now come to a conclusion that pain, apart from causing a lot of physical discomfort, is capable of either multiplying your suffering (mentally and thus physically – or the other way round too), or helping you seek answers for yourself.
Pain can …

1. Fill you with grief, regret and sometimes even a sense of defeat, if you let it take you back into the past. All the frustration and agitation comes back if you haven’t yet healed from it (haven’t dealt with it) and from there, you are not just dealing with your current physical pain, but also the mental and emotional suffering it could possibly create. It usually happens because we beat ourselves up for what is gone. We all feel defeated at times, but if you let it, this feeling can make your life a living hell.

2. It can create a lot of uncertainty, anxiety and fear and practically paralyze you if you let it push you too much into the future. All the things you can’t control start to control you and you begin to feel helpless. You’d find yourself constantly wanting to do more than you can, wanting to get better right away, find a fix/cure etc. You’d also then worry about your personal expectations and those of others and feel trapped in your body.

3. OR, if you decide to use it in a more productive way, it can help to ground you into the present moment and find ways to help yourself. When you find that your mind is going haywire, using your body as a tool to stay present works well. In this case, you are choosing to listen to pain, instead of listening to your mind about the past or the future. Choosing to listen to pain requires you to take a very non-judgemental approach to what you’re experiencing. This way, you’re letting your body feel safe and you’re just being a close friend. It is  when you reazlie that you can’t fix what is gone and that in a state of agonizing pain, you can’t even do much about the future, that you understand the importance of just being present.

I wish to skip the first two points for today. We could spend a lifetime talking about how crappy we feel about the things we once could do and can’t do anymore and we can feel crappier thinking about things we might never be able to do. We might even feel all the more worse if we give in to the helplessness and allow ourselves to feel like total victims – as though there’s something out there trying to punish us and everything is happening to us.

Let’s talk about the point #3 instead – how can you use pain to become more present?

Well, you simply let it be. Yes, you read it right – you let the pain be, and you be too. Just be. Just simply being might sound like the most complicated practice but if we manage to work with our mind and body to at times simply be, we’re able to attend to our needs quicker and more efficiently. Just simply being requires us to be aware of our experience and to let ourself have it. I don’t try to chase pain out of my body when I’m trying to simply be – if I could do that, I would’ve done it long back!

What generally helps me is to do a body awareness meditation. It’s great to get into a space of meditation but honestly, at times (due to intense pain) I just can’t and I don’t even try. Instead, I focus on slowing down and breathing, and let it happen on its own.

 I lie down comfortably in bed, close my eyes and start to breathe into my body. It’s hard to relax, really, but when I’m a tiny bit calmer, I choose one particular spot that’s in pain and try to only focus all my attention on that spot. I’ve got nine unstable joints and they each want attention all at the same time. It’s a mess! Even then, I attempt to focus on just a few points or on my body as a whole. Whatever works is fine.

Pain definitely brings up emotions for all of us and that’s okay and only normal that it does. These emotions need to run through our system and out of it in order for us to accept your body for what it is. It has taken me so long to be okay with having a body that is in pain all the time and even then, there are times when I find it hard and must work on listening to my body closely. When we choose to listen to pain, we have to be open to receiving all kinds of feedback – logical actions that would help us + some uncomfortable emotions that can guide us later. It’s helpful to make a mental note of it.

What is necessary when you’re listening to pain is to stay clear of any hypercritical comments. Remember the close friend you’re trying to be for your body? No close friend would give you a bad time because you’re in pain, right? You have to keep telling yourself that you’re only concerned with the present and that you only need to attend to the needs of your body in this moment. Everything else will fall together once your body feels better. You’ll just have to trust that you’d be able to take care of everything else later.

(Ya okay, all of this is easier said than done. But I try too, and that’s all we can do).

Keep asking your body if there is anything you can do to help relieve the pain and support its healing process. When you focus more and more onto the pain points, you’d find yourself having a mini conversation with your body. At this point, you might even wonder if it’s really your body responding or if it’s your mind, but trust me, it doesn’t matter as long as it feels like some guidance – and to me, guidance is anything that feels right deep within. More right than those useless, noisy thoughts floating on the surface, you know?

Your body might ask for you to get hot packs, or maybe cold packs. Or it might say it needs a massage, maybe a particular oil or medication, or maybe extra sleep or maybe a hot soak/shower, it might say “Ok! This is it. Cancel all plans.”, or it may ask you to skip/quit your part-time job, find a new place, leave a toxic relationship, or it might YELL that you need medical help RIGHT NOW… trust me, it will tell you what it needs in that point. Some things you can work on right away and some you have to work towards.

The next step is to respond to its needs. You might find your mind wandering again, into the past or the future, but each time this happens, let pain serve as a reminder to be present and to attend to it. Let it be a reminder for you to prioritize health and wellbeing over everything else.

From experience, I first do all the things that I know my body would like me to, and then if needed, I literally spend my day in bed if that is really all I can do. Every now and then, I close my eyes and I ask myself what it is that I need in that moment, because every next ‘moment’ is different from the previous. At every stage, I try to provide some confidence to my body that I am here to take care of its needs. If I require help in helping my body, I ask for it. There need not be any shame/guilt around asking for help.

Whenever I am able to, I journal out my entire experience. There’s a great amount of guidance behind our emotions too, and we need it in order to make any kind of changes. Writing these things down allows me to work on them later, or whenever I feel the time is right. In this way, I am able to better process and respond to the situation. Sometimes being in pain AND dealing with the emotional aspect can get too much to handle, so I take it one step at a time. Then there are times when I just want to cry in pain and hey, that’s allowed too you know! :)

Right now, in this very moment, my body is asking me to stop typing before my arms and wrist slip off. I’m going off to get hot packs for both my shoulders and ice pack for my back!

And, oh, before I go, here’s a quote I came across recently:

“Health is a crown that the healthy wear, but only the sick can see it.” – Imam Shafi’ee

Stay well and have a wonderful week ahead!

❤︎

An Extra Mile. 

 
You see, if you’re dealing with an invisible illness, a chronic or rare illness or some sort which doesn’t always show, you tend to get a lot of this:

“But you don’t LOOK sick!”

A funny meme that I found on invisible illness had a response to the above going somewhat like this, “Please tell me, what does sick look like? I’ll make sure to harder next time.”

Yes, there are times I feel frustrated and would want to give a similar reply but I rarely ever do. Because I understand it’s only normal to expect a “sick” person to LOOK sick. You’d usually expect a handicapped person to be on a wheelchair, right?

The truth is, a lot of us choose to not look sick. All you have to do is turn our bodies inside out and you may see it for yourself. It’s a conscious choice. One of those daily choices we make; one of those which may not even come across as something anyone else might need to stop and think about.

I know, life is all about making choices for all of us. Whether you’re sick or not.

But making a choice out of limited options, creating possibilities out of painful hurdles, turning physical weaknesses into mental and emotional strength, using all the brain power to keep you up and going, and having to consider bodily consequences for every little action, every move, through the day, is simply not the same.

We love to talk about strength; about how strong our body is, how toned or attractive we are, and that’s brilliant! But I’ve learnt over time, through personal experience, there is no strength like the strength that comes from within. From deep within. It’s the kind of strength that sometimes lies underneath the most nasty emotions but it’s still right there, to keep you motivated and to help you up each time you fall (literally and metaphorically).

That’s why I like to think, a lot of us may be physically fragile, but we’re mentally unbreakable. We might lose our balance, but we come right back and we’re stronger each time. We spend so much time and effort on our body and its needs that nothing else is as important anymore. What can be more of value than your own health? I can say this today, barely anything. In fact, I’d like to say nothing. Nothing comes close to health in terms of priority.

On days like today, I have to go an extra mile – to look less like a patient and be more patient with my body. It has come a long way and it has a long way to go.

Love,

Manasi Dalvi

September 18, 2014

September 18, 2014 was a major turning point in my life. I was on my way from school and a lorry hit my cab from the back, causing all the joints in my body to literally rattle and weaken. I experienced a quite an intense whiplash; with my neck and spine feeling the most amount of stress. Just few weeks earlier, someone at school had bumped right into my left shoulder, causing it to move out of position once again. I was barely healing from that injury when this accident happened. My left arm was in a sling and just as I settled in the cab on a long ride back home, I opened my sling up to give my shoulder a little rest when within seconds there was a loud bang and I thought that was it.

It took me a few seconds to actually register that a lorry hit my cab and a few seconds more than that to notice that my body was in shock.

The impact of the whiplash was so great that I couldn’t move one bit. I still remember how the traffic police just peeked into the cab, looked at me and got us to move to one side of the road and rode away on her motorbike. She didn’t think it was necessary to ask me if I was okay, and I assume it was because I looked completely alright! There was no blood, no visible injury for anyone to think that I was in severe pain – but I was. At that moment, I thanked my stars for being alive. It could have looked a lot worse but I was alive. I was in immense pain, but I was alive. I was breathing. I had no strength left in me to even make my way out of the cab in order to take down the details of the lorry etc.

That accident led me to make some even greater changes to my lifestyle. I was at the brink of having a major burnout and I didn’t want to fall into the dark pit of pure despair once again like I did around the time of my diagnosis. I had been working and pushing myself through life as if I was born with a fit and normal body, taking on too much and practically functioning on an empty tank. I was comparing myself to those around me who were blessed with a body that allowed them to continue to work according to their plans, pursue their passion and hobbies and I was only causing myself too much suffering. There were people around me who expected much more out of me and I was one of them too. It was this accident that made me see my reality, and for once stand up and make that tough but highly necessary call. It was time to prfioritize my health, my dear body, over anyone or anything else.

For months before September 18, 2014, I was hanging by the edge of the cliff, unable to take that leap of faith, which was required in order for my situation to really change. I feared screwing up and I doubted I could survive the consequences of those decisions. I was worried-sick, even though I knew I had to hold myself together and take that leap. I was suffering every single day, caught between what I should do versus what I need to do and want to do, and was experiencing terrible amount of fatigue and pain. I didn’t have it in me to close my eyes and trust that I knew what was right for my body. My personal expectations and those of others tied me down too much and kept me from giving myself what I needed at that point in time. Seeing that the life of those around me was far too different from mine used to make me feel as if I was at fault or as if I didn’t do enough and that wasn’t true at all. How my life has panned out wasn’t my fault. I didn’t consciously choose this situation and neither did I choose these circumstances to be born around or with. These were the cards I was dealt with and it was up to me now to stand in my own power and play them in a way that’s true to who I am and my condition.  This wasn’t a race against time or people. This was simply something I had to learn to work around.

It was also around this time that I understood that different doesn’t mean bad. It just means different. Sometimes different is good. Sometimes different is even better.

This accident finally made me realize that I had to stop. I had to pause and breathe before anything. I hadn’t given myself that permission to just take it slow because I was constantly thinking about my past goals or about not disappointing people. For months before the accident, I couldn’t gather the courage I needed in order to finally let myself rest. To say enough is enough and realize that it doesn’t matter what people say or feel, even if they’re our loved ones, because no one really knows what’s happening to us or our story as well as we do.

This accident FORCED me to STOP. It forced me to question my priorities. Was I my own priority or had I been giving priority to everyone else and everything else?

It was this accident which once again proved to me that not everything is in my control. I was looking after my body well, making sure I did what was needed for it to function, and did what I could to be more aware of my surroundings in order to not make any “mistakes” and hurt myself… AND guess what? This accident still happened. No matter how much we try to do things a particular way (often times we refer to it as doing things “right”), there will always be incidents that are totally beyond our control, and this accident was one of them. More often than not, these things happen because they’re meant to make us think. To force us to jump out of our comfort zone, or make that difficult decision, or simply to teach us something we are yet to learn.

It took me months to feel a slight amount of relief from the impact of the accident. Till then, I was popping an obscene amount of medicines to get me through the day and look and feel normal. Dealing with the post-accident stress was another story of its own. My skin was covered with a faint rash, which took a long time to disappear, and I was waking up at night dreaming of being hit and falling apart. At times, getting onto a Silvercab makes my body cringe a little, and I can’t help but be reminded of the accident and the effect it had on me.

Today, one year later, though there are still a few question marks in my life and there is a fair amount of instability and uncertainty associated with this condition and its consequences, I am so happy that I took those big steps forward. In some ways, this accident really helped me pick out what I needed to focus on. I chose to do things that felt right to me, even though I didn’t have a clue about whether or not they would actually turn out to be the “right” decisions ultimately. The thing is, I am now fully convinced that any decision made in favor or who I am at the very core of my being, and what my body truly needs for a condition that I’m born with,  has to be right; or at least must be one step closer in the right direction.  In fact, what is right for us today may look different tomorrow, depending on where we are our life anyway. Who says we can’t change our mind later? We might not be able to go back to that exact time, but we can most certainly learn to adapt and make better decisions as we move forward. Today, I’m  putting together a lifestyle that serves my present state and figuring it all out one day at a time. Some goals and dreams look significantly different from what I once thought I’d want, while some continue to stay strong. It surely requires a lot of patience when you have to rediscover all the possibilities while dealing with limitations so very real. 

My health has brought me closer to myself.

I’m relieved to finally have been able to write so much much about September 18, 2014. I barely spoke about it with anyone, so writing a blog post about it is a big deal.  

With that, goodnight and have a wonderful weekend!

❤︎

It’s Time Again.

Over the last eight to ten days, I have been looking and searching and texting and chatting and writing and talking and asking and answering so many things  that I think my brain is practically dead out of the excessive energy drainage. Nope, this is not something I am able to handle. Though I’ve gotten better, and certain choices that I made are proving to be right, I don’t think I have an unlimited supply of energy stored inside of me to handle so many things all at once.

It’s been a crazy hunt this time round too, and even with my physical limitation, I have managed to overcome this hunt. It’s a little accomplishment and worth a mini celebration because such factors add to the stability I need, which allows me to then work on things that I want to work on!

ODAAT has been on a pause for about a week. I came back home from a 6 week long family vacation and a new disc injury, ready to settle in and start with things I had planned to work on for ODAAT. Within a few days, I found out that I had to leave again and I was reminded  how unpredictable things can get once more! Not everything goes according to plan all the time. I wasn’t expecting this; so when I found that I had to leave, I wished I hadn’t unpacked from my vacation. The amount of energy lost in packing and unpacking just cannot be underestimated. I felt bad that ODAAT had to be on hold again, but my mantra has been One Day At A Time for a longggggg time anyway and I’ll just have to create another ‘flexi-plan’  when I’ve finally settled down in my new place. Looks like it’s time for yet anther directional change. A BIG major directional change. Leaving a place all of a sudden, managing a new disc injury and feeling weak from it, knowing the possibility of your close friend leaving and having no idea if you’d find a place just in time sounded like a bad combination of things to happen all together.

But it all turned out fine.

I looked up places like a mad woman, day in day out, could barely nap, had terrible sleep at night, and the concept of self-love faded off my mind for a bit because I was convinced that finding the right place was more important in this time of my life more than anything else. When you’re doing a lot of internal work, looking after yourself and working towards a future once again, the last thing you want is to be in an environment that doesn’t serve the same purpose for you. I decided that finding THAT one place for me to live in is going to be a true gift of self-love that I can give to myself at this point.

Yes. Uncertainty multiplied by a about a million.

One thing that was particularly different this time too was my fear level. I knew that place was out there for me; I was just a little nervous about the time that I was left with. I did my job to the best of my capacity (fine, I did push my body by a fair amount) and because I have to always think in terms of my body, the time limit just made no sense. Even then, I am happy to have handled this entire situation fairly well. Sometimes looking at the most unexpected events in your life as an opportunity to grow makes so much of a difference. This is an opportunity for me to grow. Thankfully, it’s been progressive, and even though it seems like ONE FAT LEAP FORWARD again, I’m less afraid of falling. I’m very very  grateful to have been in this place for the last ten months or so, learning to look after myself, taking baby steps forward and around the house, and having a very understanding flatmate to share this little place with.

The way I found my existing place last year was either a random stroke of luck or something that was meant to be this way. I’d like to think it was both. Back then, I was sure about my decision but I wasn’t sure I’d be able to survive. Finding a place that gave me all the space I needed along with someone I could speak life with, just sitting on the couch on random nights, was a great start to my goal towards becoming more independent.

I now look forward to yet another chapter of my life and as daunting as it can get to do this once again, I am ready. I’ve seen that sometimes you just have to let go of the cliff first to realize the immense strength and power you have residing within you or to notice all the different arms and fluffy, padded cushions just waiting to receive you. Support comes from all over the place if we are willing to open up, share our vulnerabilities and ask for help – neither of which equal to weakness.

Happy Wednesday!

A Space.

I’m going to have to make a big decision soon and I just want to write a little bit about it. I’m sure I’ll be able to write more once things settle down a little bit.

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“Honor the space between no longer and not yet.” – Nancy Levin

It’s something that matters to my existence once again (nope, no drama here); to the stability and certainty that I find beneath my feet; something that could add to a little bit of  stillness to the hypermobility. It’s not just a  pretty space we’re talking about, it’s a space where I can be me, just the way I am , with myself, and be there for myself like I have been over the past ten months or so. A space where I get the peace I crave, where my body feels safe, and gets the rest it needs. A space where my mind can breathe, and the air that fills me, heals me. A space where I would spend most of my hours in the day. A space that reminds me that it’s all okay.

We need this. Each of us. This stability, this certainty. We need this. A space that prompts us to think, to become our best selves.  To bloom into what we are yet to become. We need a space that acts like a reminder, that even int the worst of the times, we are here for ourselves. I know I’ll be safe, no matter where I go. I will be taken care of and things will fall into place.

I’ve found myself in such a situation countless number of times. I’ve known exactly what I needed, and exactly what to pick but I still was in a strange sort of a dilemma, which really shouldn’t exist. I’ve been surrounded with fear and worry, and little sparks of strength and courage that rest deep within the core of me.

 We usually know, don’t we?

How do you people deal with such situations? Do you put your situation above your health and fundamental needs? Or do you allow yourself to get what you need first before dealing with a situation at hand? Can any other situation be greater than your own health? I’d love to hear, if anyone is willing to open up and share. I’d love to learn.

An Excuse?

Before I write about what happened today, I’d just like to say – my intentions of sharing such an experience are rather clear – one, I wish that by reading these things we write, other ‘normal’ people are able to at least understand what sort of an effect their words or actions could have on people with a rare or chronic illness, even when they don’t mean to cause harm. I am aware that most of us don’t mean to, but does it really hurt to pause and think about it for a moment anyway? And two, I want to let those who are like me know that we are on the same side. We’re a team, no matter where each one of us is located or if we’d ever cross paths, we face similar situations and that we’re getting better at handling them through our experience. 


Someone asked me this morning how I was doing and since it had been a while from the last time I saw her, I gave her a quick update about the latest injury I’ve had. She heard me out I think and said something like, “Well, at least you don’t need an operation.” I said,” Yep. I don’t. I doubt that would help anyway.” She goes, “ Well it’s probably not that dire then.”

Fair enough. It probably isn’t that dire but it is causing me a lot of pain. And it’s not the same amount of pain someone else with healthy collagen would feel if he were to have a bulged out disc. 

And this happens next. 

She asked me when I plan to visit my brother and I told her that as much as I would LOVE to visit him, I do not think it’s a good idea at the moment. Given that a 20-minute taxi ride can take a horrible toll on me, I don’t wish to take on a 30-hour long journey for now.

Our conversation was going fine, I was telling her that if I do end up traveling anywhere, it would possibly be to see him first etc. Just then she goes, “NICE! You know what, just travel on Business Class. Come on, get your dad to get you on a Business Class and just go meet your brother! You have an excuse so that shouldn’t be a problem. Your back! Hahaha. Good excuse to travel on Business Class, eh?”

Honestly, I’m quite surprised that what she said didn’t get to me. It didn’t make me tear up on the spot and neither did it make me angry. I know she didn’t mean to say it the way it came across to me. I just made a mental note that I want to share this on my blog because sometimes even the closest of our people, or our health professionals, may end up making certain unintentional comments which can make us think for a bit. Depending on who I’m with, I decide if I wish to communicate my feelings or let it go. 

My reply to her was rather ‘normal’. I calmly said, “ Of course, for a long flight like that, I would need to fly on Business Class for sure.”

I’m guessing some of us who are reading this and are not dealing with an illness may find nothing ‘wrong’ with what just happened. You might even think I’m choosing words to focus on. You’re right to some extent, because I am. But you may be wrong for the reasons you come up with as to why I’m sharing this.

I don’t think what she said was ‘wrong’ per se, but it was something that reminded me of other times in the last seven years where I received similar comments, and I thought about all of us around the world who face such situations on a day to day basis. If I were someone who did not have an illness, I’d probably make a joke out it immediately. I do that even now because it can lighten up a situation and sometimes I don’t because not everything is meant to be light and funny all the time.

We don’t use health as an excuse. It’s not an excuse for us in any way. If anything, it’s the very opposite. If anything, we wish our health excused us for once. I doubt any one of us would like to use it to our advantage or something. 

Up till now, I don’t remember a single occasion in my life where I used my health as in excuse to do or not do something.

My health wasn’t an excuse when I had to submit incomplete design projects back in University. My health wasn’t an excuse when I had to cancel on my friends’ Birthday parties. My health wasn’t an excuse when I couldn’t deal with the noise around me because of the heightened pain level and needed space. My health wasn’t an excuse when I had to tell my boyfriend back then to carry my bags. My health wasn’t an excuse when I couldn’t do some basic household chores. My health wasn’t an excuse when I had to leave Design school. My health wasn’t an excuse when  I had to make a special request to the Business School to let me audio record my exams instead of writing them out. My health wasn’t an excuse when I had to tell my group-mates that I couldn’t stay back after school for group meetings because I attended a 3-hour lecture that morning and had no more energy left. My health wasn’t an excuse when I had to apply for the Disability Liaison Unit a year later. My health wasn’t an excuse when I had to stay home instead of going out with my brother because I was tired from traveling to the doctor that morning. My health wasn’t an excuse  when I had to tell someone next to me at a movie hall to exchange seats because I needed the aisle seat. My health wasn’t an excuse when I had to use a seat meant for the handicapped even though I looked young and fit. My health wasn’t an excuse when I had to take an elevator only meant for the handicapped. My health wasn’t an excuse when I had to spend a lot of money on taxis. My health wasn’t and excuse when I had to ask someone at the grocery store to help me with my basket. My health wasn’t an excuse when I decided that some relationships in my life must change. My health wasn’t an excuse when I decided to live on my own and learn to look after myself slowly.My health wasn’t an excuse when I decided to take my time for myself and make drastic changes to my lifestyle.

My health wasn’t ever an excuse.

My health was the reason; it was the reason I chose (or choose) to do things a particular way to reduce suffering and pain for myself, or fulfil my fundamental needs because I have a body that is very very different. 

So, nope. My health is not and will not be an excuse for me to travel on Business Class to see my brother.