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Life's Musings.

Everything you come across in life.

The reason I’ve been away.

So, you’re all aware I’ve been sick for 17 years now. This past year has been the worst since my Lupus diagnosis and chemotherapy. No one knew what was happening and I got extremely suicidal. We’re finally getting answers which is a relief but now, I’m also really really scared. Due to all the falls, I’ve injured my hip permanently and caused nerve damage around my knees which has caused numbness and limited mobility. Mental Health started getting better when we realized it’s because of meds and PMS. I’m currently off all psychiatric meds.

I literally just started working again this month and took on three projects, just to have my vision deteriorate very rapidly. Upon checking, we found out today that I have optic neuritis in the left eye (I’m blind in the right), my visual field is extremely small and still decreasing. Which means I now have to protect what little vision I have with everything I’ve got. I also have a cataract.

My blood has gotten affected by Vasculitis along with my brain. These are all side effects of the chemo I took in 2006. And it’s just the beginning. They say that since the effects have started showing now, it can affect/cause a lot more.

I’m scared of losing my eyesight, my mobility, my stability. I’m scared I won’t be able to afford treatment. I’ve already exhausted all the donations, credit cards etc.

And while I’m back on maximum dosage of steroids, I still have to hear comments on my weight. I’ve been on bed for 7 months, now on steroids with very real risks and people still focus on my weight (which has already affected my self confidence).

To help, you can donate here: https://milaap.org/fundraisers/support-karishma

“I’m here for you” or are you really?

What does it mean to be there for someone?

We hear the phrase “I’m here for you” quite often. We use it very easily. But are we truly there for a person when they need us the most? Are we able to put aside our differences, our grouses, and our egos to be there for someone?

As a chronic patient, every time I hear the phrase, I know better than to believe it. And yet, a tiny part of me goes, “maybe this person will prove everyone else wrong. Maybe they will stick around. Maybe it’ll be different this time around. Maybe. Maybe. Maybe.” I’m more often than not proven wrong. No one sticks around. Not when you need them the most.

When you’re a care-giver or a friend or in the life of a chronic patient, understand that your world and our world is drastically different. A fight for you and a fight for us is very different. A fight immediately translates to a trigger, a flare, an attack or all three. Silent treatment brings back abandonment issues, trust issues and makes us wonder why we ever bother talking to someone new, why open your heart out to someone when you know they’re going to walk at the first sign of trouble.

Don’t ever say you are there for someone if you can’t be there for them when:

  • They’re insufferable
  • They need you in the midst of a fight
  • Are cranky, hallucinating and disoriented
  • They’re being extremely stubborn and difficult
  • It inconveniences you
  • You don’t understand what to do during an attack
  • They need you but you want to party
  • You’re too busy with work to reply to a message about their depression coming back

 

The whole point of being there for someone is to be there when they need you, in the capacity they need you in. Every chronic patient has trouble reaching out for help, so when we do reach out, it’’s because we trust you, we’re comfortable with you and it’s worth being vulnerable for. So, please don’t make us feel like shit when we’re already struggling with our daily life.

It’s fine if you don’t have the mental or emotional capacity to always be there for someone. In that case, just don’t say you are.

Let’s treat people with respect, kindness and compassion. Compassion has the power to heal.

Who is Karishma?

WhatsApp Image 2018-08-28 at 21.50.15

“Karishma is something you experience, not a story you read.”

For a more detailed version of my life growing up, I have another blog post here. I have been sick for 15 years with 21 diseases and counting, all incurable. I am also an Activist for various medical and social causes. I think today, every person needs to be a feminist to re-balance the world. “One of my core focuses is a collective called I Will Go Out. We’re present in 33 cities across India. It was started in January last year in response to the multiple sexual harassment and abuse cases that were reported. The basic objective of I Will Go Out is to reclaim public spaces for women.

 

Other causes I advocate and spread awareness for are: Chronic and Invisible illnesses, Depression and Suicide Prevention, Mental Health, Prevention of Rape, Child Sexual Abuse Awareness, Women Empowerment, Bullying Awareness, and Awareness of Domestic Violence. The reason I’m such a staunch advocate for awareness of these causes is because I’ve been through them myself. I know what it feels to be like the victim, to face society once you speak about it, and I know how important it is to have a voice. You can’t break down a woman who has rebuilt herself on her own. So, when I realized I have the courage, and had zero fucks to give to society, I decided to speak up and be the voice for anyone who needed one.

 

Everyday, I’m questioned for my lifestyle, clothes, attitude, illness, and choices. Being an activist, a feminist and being on Social Media, entails you to a truckload of threats and abuses. Every action gets a reaction from people who don’t agree with you. For example, I dress according to my mood. My life motto is ‘Celebrate Today!’ I will be having a relapse but I’ll still dress up, and for some reason, people can’t grasp how you can look so good if you’re so sick.

 

Disability in itself has a stigma attached to it. Add to that a layer of invic=sibility and you’re in for a ride of a lifetime. My disabilities are all invisible. I’m blind in one eye, I have Systemic Lupus Erythematosus, Vasculitis, Rheumatoid Arthritis, Neuropathy, Fibromyalgia. SOme of them are recognized under the Disability Act is US, unfortunately not yet in India. These are conditions that hamper everyday life. Fibromyalgia is literally Pain Amplification Syndrome. A mere touch is painful. The fabric of the clothing I wear, touching the skin is painful. I live with that everyday. My physical pain is constant. When I have external triggers, it increases.

 

I got ill when I was 12 and by the time I was 16, I had to undergo 11 rounds of chemotherapy because my brain got affected and I couldn’t move the right side of my body. I still get seizures & convulsions on a daily basis. People find it difficult to believe that I could be ok one minute and have a seizure the next.

 

Understanding and accepting that people are ill when they say so, even if they don’t seem so,is an alien concept. Especially in India where we’re conditioned to see things in black and white. To impulsively react and advise them to be happier, be more positive, make new friends. We don’t listen to understand, we listen to react.

 

Over the years, after I was able to accept and learn to love my new reality, I became a public and motivational speaker for all the issues I advocate for. The reason I was able to was because one doctor said that if you keep yearning for what your life was before, you’ll always be disappointed. Accept that you’re no longer normal, redefine what normal means to you and live. Don’t just survive. I learnt to understand my limitations and restrictions. I learnt to let go of hobbies I used to love but could no longer do. I pushed myself to continue doing what I loved, dancing. I trained in Latin American Ballroom Dancing and went on to compete. I lost some battles, I found new ones to fight and win. It’s important to let go of what’s gone or you’ll never be able to move on.

 

What sets me apart? Me. When you get a life-altering diagnosis, you start perceiving everything differently. You experience everything differently. My names means ‘Miracle’ and I am a living miracle. I’ve cheated death in the past and I will continue to do so in the future.

 

But what I’d leave you with is this: Everyone is fighting a battle, some medical, some financial, some personal. We’re all fighting. Let’s be more understanding and kind to one another. Let’s learn to be more compassionate and spread love. You never know who needs it.

 

Always love yourself a little more

Sometimes, it’s easier and better to love a person from afar.

When they can’t accept your love, when you question yourself for loving, it’s time to take a step back. Love someone with all you have. But always love yourself a little more. It hurts when the person you love does not want your love. Respect yourself enough to step back. Know when a friendship/relationship has turned toxic. Realize when you’re more unhappy than happy with the person. Be aware of your emotions. Sometimes, the good is incredible and the bad crushes you. But you long for the good and so you keep tolerating the bad. It gets addictive. And that, dear ones, is when you know it’s toxic. And time to put a stop. It’s difficult, it’s painful, it’s excruciating. But it will pass. The longer you stay, the worse it gets.

It’s taken me years to finally understand and believe this. It’s taken every cell in my body to say NO to someone I love. It’s still a battle. Everyday, I pick up the phone, dial the number and keep the phone back down. Messages are typed and never sent. It was a one sided friendship that turned toxic for me. Because I invested too much in it. To the point that it affected my health. And only when my health got bad enough, did I realize that it’s time to put myself first. I’m an emotional fool who gets attached to people very easily and over does things. Until their lack of appreciation/reciprocation breaks me. But if I can realize how toxic it is, so can you. If I can learn to say no, so can you.

If someone comes to your mind while reading this, please sit and think. Please choose yourself. Get out of it. Friendships can sometimes be rebuilt. If it becomes an equal game. But for now, choose yourself. Choose happiness.

Learn to love yourself again. Life will get a lot better. But don’t give up on love. Don’t lose hope. You will find the love you deserve. For now, you deserve some self-love.

To end this, I’m going to share a life lesson from a friend. “Fuck everything – go with your gut, don’t give a rat’s ass about what others think, don’t take shit from anyone.”

 

Sex with an Invisible Illness

When you’re with someone who has a bruise or a fracture, you see it. You know to be careful. You’re aware of their physical pain. But with someone with an invisible, chronic illness, you can’t see the pain. It’s easy to forget they need to be handled with care. Most chronic patients shy away from sex, not because of a low sex drive but because it can get embarrassing in bed. It’s a task explaining to the guy that it’s okay. Most times, the guy’s reaction makes the girl feel weirder than necessary. It’s the main reason chronic patients do not indulge in casual sex and also make reasons when their partner is in the mood. In reality, even chronic patients are just as sexual. Sometimes, kinkier than the normal ones cos they’ve let go of inhibitions. Try accepting us as we are, with our flaws and we’ll turn your world around. I’m not saying every sex session is going to be mind-blowing. Or that it’ll be the best sex you’ve ever had. But it will open you up to a world you never knew existed. It will teach you things about yourself. It will teach you sex can be fun. Irrespective of the person you’re with, if you accept them as they are, it will be fun. But for that, you need to stop setting standards about sex and just go with the flow. Be able to laugh. A multitude of things can go wrong when having sex with a chronic patient. I’ll focus on Neuropathy, Fibromyalgia, RA and Lupus. What I say is from experience. Personal and other chronic patients.

First, I’ll talk to the guys. Then to all you beautiful ladies fighting an invisible monster.

So men. You want that hot girl to sleep with you? Listen to her when she’s telling you about her illness. If you don’t, she ain’t sleeping with you. If you do, what she says will come in handy when things get awkward in bed. From a muscle pull to a pain flare. A lupus attack to vaginal pain. Anything can happen. But that doesn’t mean the fun stops. If the girl says she wants to try that new position , it’s cause she feels she can do it. Encourage her. If mid-way, she can’t, don’t give her hell. She’s already beating herself up for not being able to do it. Be supportive. Suggest an alternative instead till she feels better. You can go back and try that position when she’s more confident. We all have our good days and bad days. Understand that. When she’s having a good day, go all out. When it’s bad, go vanilla.

Here are the things that can/have gone wrong in real life.

1. You’re going down on her (if you aren’t, start doing it), and she starts to shake. Its okay. Take a break. Her body will calm down. Once her body calms, resume it. And carry on.

2. If it’s your first time together, she’ll be tense. Her body will close off. Foreplay is your friend. It’ll help her relax.

3. If she’s giving you head and suddenly her gag reflexes get sensitive, don’t give her shit about it. She’s feeling bad enough. Switch to something that’s pleasurable for both. Or savour that neck of hers and make her forget what just happened.

4. You’re all fired up and ready to get it on. While getting into position, she gets a muscle pull. Wait. A few moments and a little rubbing will ease the pain and you can get back to it.

5. A bad fibro flare but she’s horny as hell. She’s in severe pain all over but wants that sex. Be patient. Be slow. Be considerate. Figure what position is most comfortable for her. This is where you say no to kink. However bad she wants it, you say no and go old school, missionary and slow.

6. She’s having an okay day. But she can’t get you off. Reason? She’s not as turned on. She’s exhausted. Don’t close yourself to her. She’ll never forget how she was incapable. Instead, talk about it, be able to laugh it off. Let her get rest.

7. At any point during the night, she has an attack. Now if you were listening to her, she’d have told you exactly what to do with an attack. Don’t freak out. Hold her. Wait till the attack passes. Let her gather herself and she’ll be ready to go right back where you left off.

8. Most women have Poly-cystic ovaries. Sometimes, sex is painful. Be understanding. There are other things to do other than penetrative sex. If you hold it against her, you don’t deserve sex at all.

9. Sometimes, she initiates the sex. Then 5 minutes in, she’s not in the mood. It’s her health. Not her decision. Be understanding. She’ll make it up to you when she can.

10. On most days, she will want you to ravage her and have crazy monkey sex that will take you both over the edge. She will tell you this only if she’s comfortable with you and you’ve managed the previous 9 problems successfully. On those days, it’s no holds barred. Our meds give us a very high libido. Go live your fantasies. We’ll probably enjoy them as well. So men, if you want to unleash the sex demon within, be considerate enough about our chronic illnesses

Now to the women fighting an invisible monster.

1. Be vocal about your condition before even thinking about sleeping with him. If he ain’t listening, walk away.

2. Never apologize for your condition. You didn’t ask for it.

3. Be proud of your journey so far.

4. Find a guy who understands. They are around.

5. Know your body and your limitations. Push yourself but not so much that you cause permanent damage.

6. When in bed, let your inhibitions out the door. Go wild, go crazy.

7. Be open to trying new stuff. You just might enjoy it.

8. If you can’t deliver, it’s NOT your fault. It’s okay. Try again.

9. Be vocal about what your feeling: pain, pleasure, exhaustion.

10. Don’t be ashamed of your body. If you can’t love it, you can’t expect the guy to love it.

So girls and guys, you’re allowed to be turned off. You’re allowed to be horny as hell. Find someone who matches your sexual drive. Be vocal. Be able to laugh. And have fun. It’s not a test that you HAVE to pass. Your illness does not define the quality of sex. Men: Chronic patients are just as sexual as normal ones. So go out there and have fun. But always use protection. You may be on a plethora of meds but the rubber stays.

 

 

 

 

An Unsaid Goodbye…

Curiosity takes us to an app and we come across each other’s profiles. We get chatting and soon exchange numbers. The conversations pour out turning day into night. A spur of the moment decision gets us face to face. Nervousness and awkwardness leads to me making a fool of myself. But by the glory that be, we soon are back to our previous rythm, talking through the night.

All of a sudden, your responses are sporadic, shorter and misses that sense of warmth your words were filled with. Just when I start to develop a liking towards you, you seem to lose interest.

Days later, the calls have stopped. The rare message goes unacknowledged. The warmth that filled my heart has now become a dull ache.

You didn’t leave, you vanished.

Didn’t I deserve even a goodbye?

The Day I Broke Into Mumbai.

When you buy a new pair of jeans or shoes, you know how you have to pick a day and dedicate it to wearing said new pair and do everything possible the entire day to break into it and feel comfortable and confident in it? That happened with me on Jan 2, 2015. Only, it wasn’t a pair of shoes or jeans, it was a city. I was breaking into Mumbai, or as some of us like to call it, Bombay! If only I had known what the day had in store for me.

An old and close friend was coming to town and we decided to meet for a while. Living in different corners of the city, we decided on meeting in Bandra since it was central and I wanted to know what the hype on Seaface was all about.

I reached Carter Road by 11am only to know he’s been delayed. I looked around and the restaurants were still closed. The auto driver informed me that they opened only after noon and stayed open till late in the night. Upon asking him where else I could chill, he suggested Bandstand. And so, off I went to Bandstand. Once there, all I could see were two coffee shops. Refusing to be dejected, I walked along the seaface and much to my surprise, loved the calm. Staring at the endless sea, hearing the waves hit the rocks and watching people from all walks of life, made me feel at peace. And realize how small a part we play in the world. An hour of walking and gazing later, my friend turns up. We take a stroll to the other end and sit down at the benches to decide where catch a bite from. A few minutes pass, while we’re reliving school days when all of a sudden someone stands in front of us. We look up to see a hijra (a person of the third gender) asking for money. While I usually refuse to give money to anyone just asking or threatening, my friend was more generous and gave her Rs. 20. She starts asking for more and says all the usual things they do, praising one’s beauty with a slight hint of cursing the beauty; getting too touchy-feely and as my friend informed me, they sometimes start to strip. None of this fazed me, but my friend asked if I had change and after 10 minutes of such banter, she leaves richer by Rs. 200. My friend, afraid of any more such incidents, suggests that we leave. So we take an auto and go to Carter Road.

Once there, we walk the street perpendicular, in search of a restaurant for lunch. We ended up coming back and deciding on Carter’s Blue. During a rather long lunch, we catch up with each other’s lives, share some laughter and gossip of our other classmates. When it was obvious, we couldn’t stay amy longer, we crossed the road amd went to CCD while waiting for another friend to turn up. For some reason, the waiter attending to us, didn’t seem to like my friend. He first refused to take our order, and once he did, he messed up my friend’s order. But we let it go. We decided to wait till the sun starts to set then cross the road and watch the sunset from Carter Road Promenade. During which, the third friend reaches with news of the trains getting delayed and the vandalism and trouble on the Central and Harbour lines. We weren’t certain of the situation of the Western Line which I would use to travel back home. But not wanting to get stuck in the rush-hour amd wanting to watch the sun set into the Arabian Sea, we decide it would be good to wait and watch the news. While my friend suggested I take a cab or auto back home, we weren’t sure if it was any safer had the mob taken to the streets. But refusing to let anything spoil the day and mood, we decided to see what the situation is when we’re ready to leave, hoping things would settle by then.

So forgetting the vandalism in another part of the city, we sit at the rocks at the Promenade and watch the birds. As being our habit, we start commenting on the people around trying to figure them out just by their mannerisms. During the next three hours, we cover a bunch of topics from random jokes to life goals. All while watching the magnificent sun set into the majestic sea.

This moment, for some reason, captured my heart.

As is the norm, we had to take a picture. Due to the lighting, a selfie made all of ua look like demons and I suggested we ask someone to take our picture (like the olden days). The first guy we ask was in running shorts, about 30ish, very rudely said no amd left. An elderly man sitting across offered to take our picture. But he seemed to enjoy it a bit too much and made us pose for 6 pictures, even directing us to move a bit for better lighting! While handing back my phone, he says “you kids are good”. This sentence made me smile. We then part ways and head home, only I was in for more surprises.

While in the auto heading towards the station, I witness my first road-fight. And it included a woman, various objects and a man getting beaten up mercilessly. While most people stood around and watched, a biker stopped, called the cops and broke the fight. Once at the station, I learn that the next 2 trains have been cancelled due to the vandalism. I hop onto the next train amd reach home safely.

We’re at a point of time when people our age take pride in being rude. We refuse to stop, smile and help strangers. How have we reached such levels of apathy, I often wonder. We seem to not care about anything unless it directly affects us. We pick fights at the smallest disagreements. We find qualities to mock in other people. We hurry to attach tags to everyone we meet. Why? Right then, you come across someone who wants to spend 5 minutes talking to you to understand your generation, smiles, cracks jokes and unintentionally makes you happy. Some strangers make a place in your heart.

And this was the day I broke into Bombay.

Love.

Love is a temporary madness, it erupts like volcanoes and then subsides. And when it subsides, you have to make a decision. You have to work out whether your roots have so entwined together that it is inconceivable that you should ever part. Because this is what love is. Love is not breathlessness, it is not excitement, it is not the promulgation of promises of eternal passion, it is not the desire to mate every second minute of the day, it is not lying awake at night imagining that he is kissing every cranny of your body. No, don’t blush, I am telling you some truths. That is just being “in love”, which any fool can do. Love itself is what is left over when being in love has burned away, and this is both an art and a fortunate accident.

My Life – A Battle with Depression

Let’s start with giving you an insight on how I was growing up. I was a complete tomboy, always on the roads, troubling our neighbours, talking to whoever would listen to me. My mom started bribing to keep quiet, which didn’t work too long. Though talkative, I was a teacher’s pet and a straight A student all through my school years. I loved outdoor games and there was never a time when I didn’t have bruises, sprains, muscle-pulls etc. However, it wasn’t as if my childhood was an entirely happy dream. I have been subjected to physical, verbal and emotional abuse at the hands of an alcoholic father. But somehow, I remained a chirpy girl.

As years went on, the abuses got worse. I also started getting diagnosed with various chronic illnesses including Systemic Lupus Erythematosus, and they continue even to this day. My condition at that point required me to undergo extensive treatments including chemotherapy, steroids, neurontins etc. Becoming fat from the medications and the prolonged absences from school due to my health, led me to being bullied by my classmates. I also faced sexual harassment and my self esteem and self confidence took a plunge.

Having all of these happen to me at the same period of time got too overwhelming and I didn’t know how to cope. I was then diagnosed with major depression I became a self-injurer.

I was taken to various psychiatrists, psychologists and counsellors and was given different anti-depressants but my downward spiral continued to a point where I hit rock bottom. I then attempted suicide a few times and obviously, failed each time. I eventually got tired of failing and stopped trying.

I went into that hole probably because I couldn’t find something worth fighting for. I started to realize how I had changed as a person. I had become very weak and easily manipulated. I was affected by each word everyone said – including complete strangers. People started to define who I was.

One day, when I looked at myself, I hated what I saw. That’s the day things started to turn around. And slowly, very slowly, I got out of that hole and found the strength to fight the negative energies trying to drag me down.

Even today, there are times, moments, when I feel like I am being pulled down into that black hole. It’s a constant battle to stay out. The first step to being emotionally healthy is to know what you are feeling. What you say and do should be in sync with how you feel. It is okay, even normal to feel sad at times. As humans, it is important to feel all emotions as long as we channel and express each of them the right way.

We need to be able to differentiate between feeling sad and feeling depressed. All of us have surely felt sad at some point but after maybe having some cake or listening to music, or an hour with the playstation, we got out of the blues.

When depressed, we start to become anti-social, and our hobbies aren’t as appealing as they used to be. We stop experiencing life and merely exist.

The most common reactions I got when in depression were:

  • It’s all in your head
  • Snap out of it
  • Get out more and make new friends
  • Get over it and stop thinking about it. Etc.

And every time I heard any of these phrases, it gave me the impression that i was to blame.

We need to understand that depression is not a switch you can turn on and off. It isn’t a choice any of us make and is usually the darkest period of our life.

It’s comments like these that drive a person to find another outlet for their emotions which result in self-injury. My personal experience and all the people I have talked to over the years have had one thing in common. We self-injure in a state of sub-consciousness. It’s only a few hours later that we realize what we had done and the extreme physical pain sets in. I was made to feel guilty about the cutting and later on about the scars. I was told to cover my scars. I was told I should be embarrassed by my scars. Why? Because depression and scars have a social stigma attached to it. We are forced to suppress our feelings because “people will talk”. We are made to feel guilty because of societal judgments. We are made to believe we need to be perfect and flawless. Anything against stereotype is perceived as wrong. I refuse to cover my scars. I wear them with pride. These scars remind me of the strength I have. These scars keep me fighting. These scars make me realize we are bigger than any situation. Talking about these rapidly increasing issues creates awareness. Awareness is the first step to being more accepting and understanding, and in the long run, bringing about a change in the mindset of people and removing the stigma attached to it.

Today, I define myself.

For anyone going through depression, at the first sign of it, reach out. Talk about how you feel. Don’t bottle up your emotions, it will only get worse. And it’s not a pleasant place to be in. Talk to a person who makes you feel safe and secure.

It is scary but take that leap of faith and ask for help. A lot of us can relate. You do not have to fight this battle alone.

To end, i would like to remind everyone, every person we come across is fighting a battle. Treat people with kindness. Reach out to them with compassion. Compassion has the power to heal.

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