MUSIC HEALS

This post is about a recent cultural event – “Pahila Paaul” by the CKP Samaj Music and Art Group of Indore. The Marathi phrase “Pahila Paaul” the literal meaning of which is the “The First Step " has definitely commenced a pleasantly fruitful journey which will have marvels for all of us in the years to follow. Because music is the only universal language that I know of. This event is the very first of its kind witnessed by me after getting involved with the group. The event was a true spirit lifter for all those who were a part of it. With the outpouring number of comments and appreciation that continued to follow for the rest of the week is a mere gesture to mark the emphasis on it.

“Music produces a kind of pleasure which human nature cannot do without.” - Confucius

I started preparing myself with my “energy saving mode” almost 1 week prior to this event which was worth attending. Just the thought of being be able to witness it with family was enough to provide me with a wish to attend the event which turned out to be a great success. As for me personally, it was a very energizing and enjoyable program which will have a lasting memory. It is very important for someone with a chronic illness to merely being able to come out in front of everyone. With the kind of uncertainty that I face due to the fluctuating symptoms of my disease, I am happy that I could attend the event. After attending the event, I could experience the true meaning of the phrase – “Music Heals”; which serves a greater cause of passion than just providing entertainment for a few hours.

Music has a healing effect on every person by calming the anxiety. It helps to release the happy hormones in the body by relaxing the mind. The calming effect of music restores the mental, physical, emotional, and spiritual health. Music evokes the spirit and cognitive responses. Music has an ability to restore speech. Patients who are Music lovers and music listeners respond to treatment better. Mental health affects the physical health of a person.

In the more recent years, today our lives have become materialistic in terms of being bothered about the ability to provide bread and butter for the family. Somewhere we forget to take time out for ourselves. Events like the Pahila Paaul give us a chance to live life to the fullest for a moment by triumphing all the thoughts providing a diversion to mind.

“To live is to be musical, starting with the blood dancing in your veins. Everything living has a rhythm.” – Michael Jackson

The credit of ensuing impact of re-inventing the cultural identity by putting up an excellently organized music concert, definitely goes to the entire team under the able guidance of CKP Samaj President Dr Vijay Pradhan and the convener Mrs. Aboli Dighe. Superb execution and music coordination was demonstrated by all the musicians along with the performers. The amount of enthusiasm shown by the house-full audience to encourage the organizers as well as the participants by boosting their morale will surely bring out more of such events which revitalize our cultural identity. Such cultural activities remind us that hobbies are not just for killing time but are instrumental in bringing out the best out of a person by giving a reason to be presentable. It needs immense courage to stand before an audience and be able to hold them right from the commencement to the end of the program. This is exactly what “Pahila Paaul” did. Kudos to the team members.

“Music doesn’t die” – Leo Tolstoy

The art exhibited by the silent, spoke all the emotions aloud. To tantalize the taste buds and for satisfying the “chota hunger” in the midst of mesmerizing singing and dancing event, we were provided with a decent quality authentic CKP style food and tasty snacks stalls with an innovative touch to the recipes. We hope to attend many more events revitalizing the contemporary art, dance, and music. Next event is very much awaited!!

x

An Invisible Disability

How do you explain to someone how Myasthenia Gravis (MG) makes you feel?

It makes me tired but not the kind of tiredness you feel after a long day at work. It's an extreme fatigue feeling that can leaves me with arms which feel like rubber bands or legs that are like noodles. My neck will ache from trying to keep my head upright and the droopy eyes I hide with sun glasses at odd times of the day or an eye patch most of the days. Some days I will choke on my own spit and I cant smile because my facial muscles won't contract. My family knows to let me be alone for some time because I need to be with myself. This is what makes me feel miserable and vulnerable having nothing else to think of but keep pondering over a thought of helplessness. But I never loose hope. I sweat from the medicines I take so even on the coldest days you will find me outside fanning myself. I've lived with this for quite a long time, that the symptoms are a second nature to me now.

I know how to read my body and the dangers that MG could cause me but still, I have days where I get scared, lots of them. Mostly the nights to spend with breathless chocking sensations and heat flushes. There are times I can't see what you do and I can't speak what you expect me to. But that doesn't imply I don't want to talk or meet you. I might just not be able to do so....

Today is so beautiful and warm but I don't dare sunbathe because for some reason this makes my symptoms flare. That's okay, I don't feel I'm missing out. I cant sing my heart out or cant dance madly to my favorite tunes. I can't stress out on what I don't have or what I can't do or else I'd go crazy counting the innumerable things. Autoimmunity has made me sacrifice a lot but I cant let it do this to me anymore. I'm grateful for every day I see and for my family and friends around me. I still hold on to the hope for a cure and for a better future. For all of you who have MG, we have to fight a little harder for today if the day seems brighter at this moment, it definitely might not be the same the very next hour !!

It is complicated to explain others what it feels to survive and fight this invisible disability. Yes MG is a neuro-muscular autoimmune crap but the word "NEURO" doesn't make me a lunatic or a psychopath or an insane person with an unsound mind. The person thinking so is the biggest lunatic. Had you been in my shoes you would realize what this walk means. It gets difficult to get through it every passing moment. But it isn't impossible with the support of my lovely friends and a caring family. Thank you all n love you lots !! Will never be able to explain to you what have you all around means to me. And those who do not understand what MG presents to us...rather than commenting on someone with chronic illnesses or being judgemental for their "not so normal" life, or accusing them for being over sensitive and emotional - just thank God that you or your loved ones have not received this unexpected surprise gift from God....

A big salute to all the Warriors fighting MG and other chronic illness !!

You are the courage personified 😊 

You are the embodiment of HOPE

Choose to keep going and choose to spread awareness

Everyone Has Their Own Demons To Fight

I am 32 and I struggle with Social Anxiety along with Myasthenia Gravis. I know it's a new term for many. It was for me too a few years back.

I embrace who I am. I have never restricted myself to talk about my illness. People need to know and be aware that such a thing exists. It's not fake or psychological as some may think. Rather a painful reality that the society chooses to hide in stigma. It's not a taboo. I have cultivated the courage to accept that in some aspects I am imperfect. It needs guts to set boundaries for yourself - to say 'no' !!

Everyone fights their own demons at some or the other point in their lifetime. Mine was a bit early though. I choose to be a warrior. No matter what I have been through, I am still here. Fighting my chronic fatigue everyday I am face to face with social anxiety issues in every aspect of my daily routine. I may have been challenged but Myasthenia Gravis (MG) has not defeated me. Neither will I ever let it !!

I have to make choices at every aspect of life. It's not a defeat but bravery to choose what is right for your health. Nothing is more worth than your own well-being. I have to fight against my body on a daily basis I am not willing to fight anything or anyone else. I need my energy and will to struggle for life rather than be involved in the stigma that people have against someone with chronic illness. I may not be able to do certain things due to my chronic autoimmune disorder, but that doesn't mean I should be deprived of any love or respect as a human being that I deserve. I am not my disease. I am someone who is fighting it valiantly !!

I love my family and friends.. cheers to all those who support me. I am on a mission to De-Stigmatise mental health issues and chronic illnesses. You make me want to live. It's your love that I get my energy drive from, to fight this demon of mine - my autoimmune MG. I call it mine because it is very much a part of my lifestyle. My daily routine is affected by it. If I invest my energy in doing one chore I have to literally snatch energy doing some other thing. I have a limited number of spoons and battery to use it wisely n choose the tasks that matter the most. This is very depressing at times. Not being able to do normal things that most people do quite easily. We take so many things for granted only to realise what they mean to us when we loose them. But I allow myself to be away from any negativity. I do not have to let anyone hurt me even emotionally or mentally for that matter because it will have a very negative effect on me health wise...triggering the stress associated symptoms of MG.. stress is one of my biggest demon. But to avoid stress and anxiety I have my own coping mechanism. Prioritising is the key and I have learnt very much to prioritise in life.

It needs a great deal to associate yourself with someone who constantly needs your love n assistance. Who needs you to lift her spirit every time she gets disheartened and troubled by her limitations. With me that happens often. But my husband does it wonderfully for me - not letting me fall apart. Love you hubby !!

I am equally grateful to my parents and to my in-laws for loving me... To encourage me when I find myself depressed due to many things that I cannot do. And not to forget my adorable granny n ever encouraging brother, my super helpful besties, my soul sisters and brothers .. my cousins. All of them have had a great impact on my life positively.

They are the true jewels in my necklace of life. Thanks for being there for me always !!