Mayuri Saxena
@Mayuri_Saxena
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40yo living with ALS on Life support. Author. Creative Director. Advocate. Dreamer. Public Servant. ALSFRS 1/48
New York City
Joined March 2012
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This was hard to write. Many people don't realize how close to death I was this past Fall. I could feel a slight separation of my soul from my body. I was just waiting for Death to take me. Then a strange force overtook me. For a few days, I could not interact with anyone.
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Discipline. Even as a Quadriplegic on life support with a future as shady as an used car salesman you meet in the parking lot of a Walmart at 11P.M., I maintain a level of discipline in my day to day life. Every day I wake up at 3:30 A.M. and do some form of meditation. Around
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MUHAHAHAHAHA Grades just posted!! Got an A in Pre-Calculus as a quadriplegic, on a ventilator, trached and only using my eyes! Victory is sweet!
#ALS
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Being quadriplegic and on a ventilator with little support to go outside has its downsides. This year I'm missing multiple graduations and weddings of my close cousins. So my aunt decided to make and wear a pin of my face at these ceremonies, so I'd be there to witness it all❤️
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If you can, please say a prayer for me tonight. Just because. 🙏
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My 85yo neighbor who lost his wife earlier this year called at 9AM to let us know today was his birthday. So obviously yours truly sent over a box of Greek savory delights
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When I get overwhelmed, I remind myself to trust the journey. The path ahead may be unclear. Life doesn't owe you an explanation. Expectations may slip through your fingers. But you try your best. And I mean your very best. Like the salmon swimming upstream against all odds. Then
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It's been over three years since I lost my ability to talk. The most striking thing I noticed was how much people talk unnecessarily. Many find the need to say something even with no value. What we sacrifice is the opportunity to enjoy the present moment. The blessing I have
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Just wanted to share even though I was feeling very ill, I got to sit on my front porch for 15 minutes during my birthday party
#ALS
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While I am helpless, quadriplegic, on a ventilator, unable to move or speak... my dog decides it's an opportune time to fart on me 😑
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My friend's 8yo son has met me a few times now. He always brings a hand written card with a flower. A few days ago, he declared to his mom that he wants to grow up and become a scientist so he can find a cure for
#ALS
. I swear, kids are angels in disguise.
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Trying to make the best of this life with what I have left, with whoever will stand by my side
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Almost 7 years since my symptoms started and I still wonder what did my soul sign up for. Almost every day I am taught a new lesson and am humbled by this opportunity to grow under unfavorable circumstances. Flowers do bloom amongst the thorns. I scroll through my posts of
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I wanted a wave of birthday love but instead I got a tsunami! From the bottom of my heart, I can't say thank you enough for making me feel beyond special. I'm still recovering from the weekend so give me a bit to bounce back.
#alwaysblessed
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ALS in its most advanced stages changes not only your perspective on life but the core essence of who you are. When I lost my ability to walk during my first year of symptoms, I was still concerned of my new image as a disabled person and how I was seen by society. I bought a
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I choked up the other day because I noticed a subtle yet profound change in the way I think. Before I started meditating almost ten months ago, I would always say IF I get better, such and such thing will happen. But unbeknownst to me, something changed within along the way and I
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I am not dying from ALS
I am Living
I am not trying to survive ALS
I am Thriving. Today. Everyday
I am much more than my disease
I am Powerful. Brave. Passionate. Beautiful. Strong. Fierce. Kind. Stubborn. Loyal. Funny. Smart. Witty. Worthy.
I Celebrate Me! Celebrate you, too!
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I told the new nursing staff that they need to be alert because I can die in a few minutes if something goes wrong and their supervisor asked me to try not to scare them. THIS IS MY REALITY. So upsetting.
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I just had a zoom appointment with my neurologist and noticed towards the end of the session there was a cute brown doctor sitting in the back. So I did the only sensible thing I could think of at the moment. I called him out. "Yay! You got a cute doctor in the back! " I think
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Got my official acceptance letter into Arizona State University's BSc in Physics program (online)! Starting this August. Nervous AF. Wish me luck!
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There was a time I didn't feel loved, didn't feel pretty, and especially didn't feel worthy. Strangely, it took a fatal diagnosis to start falling in love with all of me: mind, body and soul
#ALS
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Sorry guys I haven't been so responsive. Midterm is tomorrow and I'm a little exhausted! Wish me luck!
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Everyone should have a will. It's common sense. I wrote mine today and I just need a hug.
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Since getting my trach, I have had the opportunity to identify the big boulder of sadness and hurt that was weighing me down. I have been chipping at it ever since and noticed I feel lighter today. Still a work in progress.
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I'm grateful even though I can't eat. I'm grateful even though I can't sit at the table with my family. I'm grateful even though the world moves on without me. Gratitude is the cornerstone for living a fulfilling life. There will always be a challenge, a disappointment, a loss...
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Nervous about tomorrow's feeding tube change, not because the procedure is difficult, but due to the anxiety I face as a non-verbal quadriplegic being whisked away by strangers. From the EMTs to doctors, I have to put my faith in these professionals,
and God, to take care of me.
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I don't take any second for granted. The next one could be my last. Take a second and Pause. Pause to appreciate life. Pause to accept the love around you. Pause to thank the Universe for your blessings and challenges. Own each second for some don't have a second to spare
#ALS
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I know I say it all the time but I miss my smile. I feel fewer people would be scared of me if I could smile
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Hello Everyone!
Just a heads up that Mayuri is currently dealing with difficulties related to her eyes not calibrating properly and feeling too dry for her to type comfortably. This might impact her social media activity for a bit. Please know that she is managing and actively
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The majority of people don't really know me. You see me through the lens of
#ALS
. However, I will let you in on a little secret: ALS didn't make me a warrior; I have always been one from the start...
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Some say the angels sang on this very day many years ago. Others claim it was static from a radio. Either way, the world made noise when I entered this world 😆 Happy Birthday to me ❤️
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Forgive me for saying this to the majority of you that this doesn't apply to.
ALS patients go through levels of Hell you didn't even know existed. So if you troll or bully any of us you will be called out and I guarantee there is a special kind of Hell waiting for you.
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Apparently, my dog farting on me is the most popular post I've ever written 🤣 Thanks for keeping it real Twitterverse. Love you guys
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Very few people understand what I'm feeling right now. Consider yourself blessed if you can't imagine.
#ALS
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2 years since my tracheostomy when I was just 36yo. What an emotional journey it has been
#ALS
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Last night was rough. My lungs were filling with fluid so fast, it felt like I was drowning every hour. Thank God for steroids in such emergencies. This disease, I tell ya, is not for the faint of heart...
#ALS
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Grateful for losing everything I had. Blessed for receiving everything I need.
Have a Happy Thanksgiving everyone.
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Before
#ALS
, I would be planning my Black Friday trip and obsessing about material things. I couldn't wait to throw a lavish dinner then stand in long lines to get a good deal. Finally, I have come to a point in my life where just sitting with my thoughts gives me great pleasure
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When I graduate, I am going to dedicate my degree to the neurologist who offered to assist with end-of-life procedures but refused to submit an application for expanded access to Tofersen.
I don't need your permission to live.
#ALS
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I had an old college friend find out I have
#ALS
and explained to her I was on a ventilator and quadriplegic. She mentioned she would like to visit one day and hear my laughter again. I didn't have the heart to tell her I could not speak, let alone laugh anymore
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Be the hero you want to see in the world.
5 years ago when I first heard
#ALS
associated to me, I googled 'ALS Hero'. Unfortunately, a dead baseball player and an astrophysicist didn't quite inspire me the way I had hoped. So I decided to become my own hero from that moment on
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Everyday commit to addressing your demons. After my tracheostomy,I went into a darkness so deep that no light could reach me. For months I held an imaginary gun to my head playing what seemed to be a never ending game of Russian roulette. I kept asking myself how did I get here?
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I feel like an imposter. People come to me for inspiration, but I am not always superwoman. I cry. I have panic attacks. I get scared. Maybe, I am not the woman you want me to be. The only thing that I know is my foundation is built on hope, faith and gratitude.
#ALS
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Abused as a child. Molested. Divorced. Fired from my job. Finally, diagnosed with one of the most deadly diseases on the planet. Unable to move, to talk, to eat, to even breath.
But today, it became crystal clear.
This life was worth getting to this moment.
#ACTforALS
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I am beyond ecstatic! I think I found a possible research opportunity through school! Working out logistics on whether I can operate the software with my eyes. More details later if all goes well (:
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Thank you everyone for your love. Before I only knew things. I didn't value the present moment. Before I worried about relationships. I didn't know myself. Before I let society shape me. I didn't realize I can shape the world. Let the storms come. I'm just a rainbow inside.
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Thank you everyone for your prayers, well wishes, love and light! Everything went PERFECT yesterday! Just feeling so blessed. Even the Sun kissed me the whole ride to and from the hospital.
#alwaysblessed
#always
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Courage is waking up everyday and starting all over 💪
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I think I like being serenaded to on my birthday! Happy Birthday me!
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I could really really use a hug and an 'I love you' now😥
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The muscles around my shoulders have weakened so much that it feels like my arms are ripping out and causing excruciating pain if I don't support them... but guess what? I'm doing math homework.
#whatsyourexcuse
?
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Despite the challenges, I can't express how happy I am to be back in school. Some days I have tears of joy running down my face.
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A humble requests. Please don't be scared of me. Despite how I may look, I am full of joy.
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Had a successful Friendsgiving with my girls from 7th grade. Also, got mom drunk... ok, just very tipsy. Success. 😂
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When you've lost everything on Earth, you look at the stars differently and realize you still have every single one of them
#ALS
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May every breath you take into 2023 be filled with love and compassion.
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I hate how the medical community has given up on me when I haven't given up on myself
#ALS
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I don't know why I look like a blimp... oh well, can't look cute all the time
#proceduresuccessful
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Finally feeling better. I felt so ill last week that I thought I would need hospice. Thank you all for your patience and my apologies for not responding to everyone!
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I hope when people complain of small shit in their lives, they remember there are people like me in worse conditions who can't protect themselves like when hen boiling water is poured on their head thus burning their scalp. Practice gratitude because ALS can happen to anyone!
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When I first heard the words
#ALS
, my immediate thoughts were well, I'm going to do my best because that is all I can do. The rest is up to God. For it would only be a tragedy if I didn't give it my all... and believe me sweetheart, my life is no tragedy.
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Why does half the battle with ALS feel like just proving you matter, explaining why your life is worthy and convincing others to give a damn while your body shuts down? Sometimes, I can't tell what is worse: the disease or lack of empathy?
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We never really know what is around the corner. In this pic, I was newly divorced and trying to survive in a toxic work environment. Little did I know, I was about to be fired in a month and diagnosed with a fatal disease in 5 months.
#ALS
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Thank you everyone who offered to help. I'm just feeling overwhelmed right now and can't think clearly. I need to clear the dark clouds over my head. I'll feel better in the morning.
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I finally decided where I would want my ashes disbursed and it has given me great peace. Hopefully, no time soon though.
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Please don't tell me you'd rather die than be in my position. I'm literally fighting for my life everyday. I fight doctors. I fight the government. I fight death. All for the right to live. Don't make me feel guilty. This road is already lonely.
#ALS
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This experience has humbled me and I am forever grateful. Thank you for letting me share it with you.
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Today was good for my soul as I was surrounded by friends and family all day.
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In honor of The Little Mermaid, may we all see ourselves as magical... just the way we are...
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So excited to get a yoga initiation tomorrow online live by Sadhguru. Eventhough, I'm not feeling well nowadays, I pray I can get through the 8 hour day tomorrow and deepen my meditation practices. Wish me luck!
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