A call to action. A cry for help. An opportunity for you to realize your power to give strength to someone affected by a blood cancer (Leukemia, Lymphoma, and Myeloma). Get involved. Make someone stronger.
Dedicated to unwelcomed resident.
For as long as you have been around, I tried my best to not think about you or address you. You are there, that is undeniable, but I didn’t see the benefit of us conversing. Instead I did my best to coexist with you when possible. But I think it’s time for us to have a chat. You know, reminisce a little…
Several years ago, you were gracious enough to let me know you were coming months in advance and so I anticipated your arrival. For some, the warning may have caused anxiety, but not for me. The inkling of your arrival allowed me time to brace myself. Starting with the acceptance of the possibility.
I wasn’t going to be shocked by your unwelcomed appearance and for that I will always be grateful.
I tried my best to prepare my family without sounding pessimistic. Planting the seed of possibility so they too could benefit from your gracious warning.
Then I went into offense mode. I seek out the top “psychologists” and “assassins” (aka doctors) in your field. The ones who had studied you for years and knew you the best. Lucky for me, I sound much younger than I am on the phone, so every nurse I spoke to was willing to help me get in touch with their doctor. My goal – to enlist them as advisors because I wanted to make sure my team was stacked with MVPs.
With the help of these doctors, I educated myself. Learned everything I could about the different forms you may come in, your behavior patterns, the treatment options and the possible outcomes. All while managing pretty well to continue to live my life and not obsess over you.
Meanwhile, you gave me a crash course in the art of adjustment. Adjusting to your impending presence with your inflaming symptoms. This turned out to be a repetitive lesson that still continues.
After all the foreshadowing and preparation, you finally made your presence known. May 25, 2011, your birthday. It isn’t one I celebrate, but I do acknowledge that you are still here and so am I. I guess I’m your party crasher on that day.
We tried to coexist in the beginning and that lasted for some time. Both aware of the presence of the other. I did my thing and you did yours. You remained somewhat silent while throwing some underground parties inside me. You thought we didn’t know, but we were observing them closely. They started off subtle but with time you got bolder. Bolder than your kind usually is.
No matter how much I had tried to prepare myself, there was no way to fully prepare for you. You simply turned out to be much more unforgiving than expected given the form you came in.
You started with the physical, as you always do. Residing in unwanted places, making your home there, not thinking of whose home you may be destroying.
Then you bled into the mind and the minds of those who love me. But you didn’t stop there. You bled into my future, my hopes and dreams, my independence and then my survival.
You took things from me that shouldn’t be taken from anyone. You took things away from me that shouldn’t be taken from any woman. I dealt with it all. Accepted what I had to and pushed back when I could. But that still wasn’t enough.
You kept spreading. Eventually your existence became too much, impeding on me daily and so I had no choice but to try to evict you. I tried a few times, a few different ways but the benefits were temporary. And as luck would have it, you eventually started taking up even more real estate. Seeping into every inch of my body, organ by organ – the least you could have done was buy me dinner or paid rent! (That’s a joke. You shouldn’t be so serious all the time, that’s part of the reason no one likes you!)
Despite your not-so-silent takeover, the interesting thing is I still don’t hate you. Unlike an evil person, you just don’t know better. This is your nature and all that you know, like a wild animal. I know it’s not personal, although it may feel very personal at times. You seem to be this way with many people who host your kind. Simply unforgiving.
Seven months ago I was put in home hospice care. You had completely disarmed me and so I had to discontinue treatment. Doctors told me there was nothing else they could do for me except make me comfortable. So I went back to trying coexist with you, not that I had much choice. Once again we prepared for the worst while tightly holding on to any shred of hope. Hoping you would accept this compromise for a little longer, trying hard to ignore your victory dance.
It’s October now and here we are – together still. You are strong, no doubt. But for now, I am stronger.
You’ve taken so much but who I am, who I want to be, will forever be mine. Your game, your rules but on my terms.
Although you reside everywhere, you have not consumed me and you do not define me. If you don’t know, now you know.
So, this week I choose to thank you. Thank you for giving me more time than the doctors thought you would. Thank you for introducing me to so many kind faces that work to help me endure you. Thank you for letting me maintain some sense of independence. Thank you for stepping aside and letting me push through for an hour or a day, when it really matters to me. And most of all, thank you for another birthday.
I will be celebrating and dancing this week, and not just in my head. Arms, legs and everything in between – I’m all in!
And as for you my friend, well you should really consider thanking me too. Because I, make you look good.
Photo credit: Kavita Gajrawala, Komal Patel and Kajal Patel
Amazing. Priceless. Blessed.
Very touching but firm letter. The acceptance of the unwelcome guest is the first step and you have conquered it. We pray for a miracle. Shilpa (Montu’s wife ) has registered as a donor but unfortunately her bone marrow has not matched yours. She is hoping to help someone when there is still time.
I am touched by your letter. It is beautifully written with each word carefully chosen. Your courage, strength and also humor are exceptional and truly admirable. I am touched beyond words. Not to flatter you but your hidden potential as writer has come up.
I have no doubt that you will beat this unwanted invader. There are many miracles in the world, beyond medical science. Your courage and blessings from almighty can create another one.
Though I have not met or seen you but my thoughts and mind are now with you. Thank you for sharing your journey with others and giving them strength and hope.
Thanks so much for the kind words
Not sure if you remember me – we met a very, very long time ago as family friends (my parents are Ashok and Bharati Shah) and I have always remembered you and your family. Your letter is beautifully written and your courage and strength are truly admirable. I have no doubt you will persevere and beat this unwanted invader, so thank you for sharing your journey with others and giving them hope. I now work for Merck in Norway, so while I am far, please let me know if we can help in any way!
Hi Arpa, of course I remember you. Thanks so much for reading this and sharing your thoughts and support. Norway…sounds interesting and fun. Hope you’re doing well. Thanks again for your msg!
Love your spirit; I know I have so much to learn from you & your dad. You are a living example of Dada’s Gnann.
We haven’t seen you since a while, I still have your family picture when you were in Wichita
Hasu Doshi – Kansas City
Happy birthday! Best wishes forever.
Dear Ekata : Very Happy Birthday to you…..Praying for your good health…you are
a fighter…..May God give you more strength to defeat co-resident….You are
great Ekata…..Take care
Thanks so much uncle!
Happy birthday. I admire your spirit, glad acceptance even with with the worst enemy who is stubborn and ignoring. Your kind and gentle request along with our heartfelt prayers will continue for this powerful soul who is so kind and gentle to the world.around .
Love you, Kokila-auntie and family
Ekta; Wish you a very happy 40th birthday, enjoy and dance the whole day. You deserve it. Well written letter to your guest who has decided to take real estate in your body. One day they will escape and hope that comes soon. Best of luck and be strong as ever for your nature. Bhupendra Deliwala
Thanks so much uncle!!
Wish you a very happy birthday! Your strength, conviction and endurance are remarkable!
Thinking of you…..
Thx so much! Hope you are well.
I don’t like your friend, but you are amazing. Beautifully put as always. I refuse to say the “H-B” words until I see you on Friday.
happy birth-day/week/month/year to… YOU!