Wednesday, May 19, 2021

#25SilverLinings - The Elephant In The Room

Money talks or lures many men to work abroad, especially in the Gulf, leaving their family behind. That works well until they get married and have children. Many of them are not around to attend the funeral of their parents, birth of their child or during the challenging times to lend a shoulder to their wife. Rizwan was one of them. He missed the death of his parents and birth of both his children. He had moved to UAE at a very young age, maybe 18, and spent the majority of his life there. In our 7 years of marriage, we had been together for a short time. Unfortunately even the little time we spent together was not quality time since there were always issues to be resolved. His family never hid the fact that they disliked me since the day he announced he was marrying me for reasons known better to them. They always created a lot of stress in our relationship, and at times I would get tired of explaining things to him about what actually happened when he was not around. Most of our post married life was spent resolving issues, either related to us or his family.

Now, what usually happens with these couples who stay apart for say 16 -24 months at a stretch, sex becomes something they look forward to when they meet. I feel that is a natural response for any couple.
In my life, when cancer had raised its ugly head, my daughter with special needs and the crying husband who was withdrawing into a shell, sex became an elephant in the room. I did not know how to address this issue. Should it happen, should it not happen was the dilemma. I was confused about handling this issue. The elephant was there but we both were not addressing it. I was worried about his response and he was crying silently and looking completely worried, not excited or aroused at all.
I was very confused about my role. I had no idea what was the right thing to do. I decided to take the back seat. Now I cannot mention what he was thinking, because people’s thoughts are hidden from us. I am damn sure if that was not the case, then Thanos did not have to make the effort to wipe out half of the population. People would do that for Thanos. Ignorance is bliss and the reason the human population is growing.
We were sitting silently in our room, since it was decided that we would go for a second opinion the next day and since I agreed there was nothing more to continue the conversation. My sister came to speak to him. He was saddened to see her. She was upset that I had not given him a good bedsheet, and ordered someone to get it for him. He still remembers her gesture and mentions it at times. She was in pain and was on Morphine and for someone talking to her after a long time, the effects of cancer’s progress were too striking. I could see both fear and sadness in my husband.
We had our dinner silently. Tomorrow I would go to an oncologist for a third opinion (not second)- I already had opinions from two doctors. As we retired, the elephant remained in the room. For me at that moment, sex was not a pleasure, a need but an assurance that things were OK with me. Somehow, breast cancer and the talks surrounding it had made me feel as though I am losing my femininity rather than a breast. The assurance was not happening and I wasn’t going to seek it either since my ego was bigger than an elephant. It always has been and I saw that cancer had not touched it. I was only losing my breast and not my pride.

Tuesday, May 11, 2021

Happy Birthday Dear Daughter


Just a few days ago I was holding a little baby in my hands… so calm and peaceful she lay asleep that I could not believe it was my own baby. OH NO!!! it was not a few days ago. It has been freaking 28 years now. What year is it? 2023???? Ok! I was holding her in 1995.. Wow! 

It seems just like a few days ago. I can still feel her warmth, smell the baby's smell, and hear her baby snore. So my baby is turning into a fine young princess or precisely a Queen. 
When doctors told me she was a special girl, I did not have any trouble believing them. She was special and I could see that in a different way than what they meant. As days changed into months and months into years, she proved to be special in every way. I have seen her bring out the best in people. Even the not-so-good ones. She has a smile and love for everyone in the world. She doesn’t know the barriers of countries, caste, creed, color, money, status, age, etc. Not even the importance of the human race LOL. For her all creations of God are equal. For her everyone with a ‘HI’ is a friend. Anyone with anger, scowl or growl is ‘Me happy no’. So simple is life in her terms just like her language. To be happy, sad, and angry just happens naturally. No drama. Nope. I remember her saying bye to the ceiling fan before shutting it off. Saying sorry to a pencil for dropping it down.

I love the way Farheena greets the day with her unique sentence, "Tomorrow has happened!" There are many things that only Farheena can say or do, especially the unconditional and limitless love she shares with people around her. 
With her medals and certificate
Though life began with loads of challenges for Farheena, nothing can stop her from being happy. Today, Farheena does not talk fluently, but she does communicate in her own way and style. She can see clearly. She walks with little help. Farheena manages her own life and keeps in touch with friends of her choice through the Internet. Facebook and recently WhatsApp are her favorites. 

When Rayyan got married last November, she couldn't be part of all the fun due to the mobility challenge but once home, she organized games for Madiha and all of us and enjoyed to the fullest. She also got pictures of Madiha in different poses on the flower-decorated bed. 
She embraced her sister-in-law with all love and Madiha did the same. I love the picture of them below. Madiha and Farheena have a special bond unlike any I have seen.

With little words she can pronounce or spell, she uses her creativity to convey messages to us. Her lack of complete vocabulary has not stopped her from communicating with people. She keeps trying until she is understood.  

Sharing her friend's secret with her baby doll Annie

2015 marked a new Era of my life because this was the year when Farheena walked in with the first Salary she received for making paper bags in YST which is now Fame Swalambhana. She is involved in lot more activities now.

That was the biggest goal of my life achieved. People who do not understand the whole concept often ask me, “How much does she earn?” That is not important. What makes it important for me as a mother is to know that she is now capable of being engaged in fruitful and purposeful work throughout the day. Apart from her job at Fame Swalambhana , With lockdown shutting of her vocational center, she started her online shopping for friends, helping them find what they need and selling few products. She loves earning in her own simple way. She doesn't surrender to being completely dependent. 

My inspiration in 2023 or any year is my special daughter Farheena who has not allowed anyone to take her for granted. She knows how to protect herself and when to ask for help if someone is bothering her. She carries herself with the dignity of a queen and is proud of her achievements. She can make people feel like somebody special. Moreover, unlike many people I know, she loves and respects herself.
She showed society's effect on special people, inspiring me to start an inclusive preschool - My Giggle Garden. She has ignited a passion in me to make our society more inclusive for special people like her. 
20 years ago, I consulted a lawyer regarding my legal rights. During the course of the discussion, I mentioned that I am proud of my daughter. The lawyer then retorted saying, “Stop lying to yourself Farida. Come out of the delusion you are living in. No one can be proud of a special needs child. You can accept and love her but cannot be proud of her”. I was confused back then and walked away without answering her. I knew I felt pride in my heart when I thought of my daughter, but I was not sure. 
Today, I can very confidently say that I am very proud of my daughter. She has taught me a vital lesson in my life – it is not what you get in your life that matters, but what you do with what you have which makes the difference. I know she will also continue to inspire me in the coming years.
People who do not see what she sees make all those unnecessary exclamations that have sadly changed her. But inside she is still the same baby with a fiery temper that lasts for a few minutes. It has always been easy to make her happy and smile so is it easy to make her sad and cry. I hope that everybody connected to her will understand her innocence and make her always smile without hurting her … even when I am not around. I send a silent prayer to God to take of our (she just partially belongs to me) little angel always………..
There is a story I would like to share with you, which has always helped me deal with my daughter for all these years. Helped me to restrain myself from making changes to her. Not wanting to progress in a hurry. Deep in my heart, I know there is reason for everything happening around us.
A man strolling through his garden found a cocoon of a butterfly. He would watch it every day. One day a small opening appeared. He sat and watched the butterfly for several hours as it struggled to force its body through the little hole. Then it seemed to stop making any progress. It appeared as if it had gotten as far as it could and could go no farther.
Then the man decided to help the butterfly. He took a pair of scissors and snipped the remaining bit of the cocoon. The butterfly then emerged easily. Something was strange. The butterfly had a swollen body and shriveled wings. The man continued to watch the butterfly because he expected at any moment, the wings would enlarge and expand to support the body, which would contract in time. Neither happened. In fact, the butterfly spent the rest of its life crawling around with a swollen body and deformed wings. It was never able to fly.
What the man in his kindness and haste did not understand was that the restricting cocoon and the struggle required for the butterfly to get through the small opening of the cocoon are God's (Read "Nature's" if that comforts you) way of forcing fluid from the body of the butterfly into its wings so that it would be ready for flight once it achieved its freedom from the cocoon. Sometimes, Struggles are exactly what we need in our life. If God ("Nature", for those who don’t believe in supreme power) allowed us to go through all our life without any obstacles, that would cripple us. We would not be as strong as we could have been. Not only that, we could never fly.
(Source of story: Unknown)
Have a happy flight Farheena… you have squeezed enough power in your wings now. Wishing my dear girl a pleased 14th Birthday.
I am thrilled to share the story of my hope and happiness with people who may feel overwhelmed by the challenges in their lives. Hang on and fight with all your might! You will succeed.

The pretty Baby

Loves to dress up

Determined to get on her feet after triple
fusion surgery on ankles

Making her style statement

One of those rare days when she cleans
our home

Thursday, May 6, 2021

#25SilverLinings - The Knight In Shining Armour

I was waiting for the 25th of April 1996, when my husband would arrive from Abhu Dhabi. From the start of our relationships, we had our differences, issues and fights, but then we were also the closest two people can get. We shared sex, affection, love and care for each other. We shared the parenthood of two lovely children. He was the man who was responsible for me and my children, so the burden had to ease when he came, right? He was supposed to be the Knight in shining armour during my fight with a monster called cancer.

He first went to his home in Byndoor and paid a visit to his Mom’s grave before coming to Bangalore with his brother. When he came, Farheena was asleep and Rayyan greeted him happily. He was so proud to show off his beautiful sister to his dad. I was busy with the pending cancer treatment and did not pay much attention to get him ready for Farheena. I should admit that I never felt a need to get anyone ready to meet Farheena. I completely forgot what effect a daughter with special needs would have on her father seeing her for the first time when she was 11 months old. Unfortunately, he was not ready for all the challenges that he was facing, especially a special needs girl child, his mom's death and my cancer all rolled into one.
When I was looking forward to assurance, support and strength from him, the first thing he did was break down and cry. I felt sorrow surging in me as well and I was on the verge of tears. I consoled him and felt sorry, but the darling he is, he has this habit of changing my feelings quickly, especially when he opens his mouth to talk. He never allows me to feel bad for him for long.
“Why me?” he asked, “First Allah gives me a disabled daughter(that was not an acceptable term), after a few months my mom died and now my wife has cancer. I haven’t done anything wrong. Why is he punishing me?”
Good for me, because the tears I was about to shed along with him started to retrace their steps. Suddenly I had my sarcastic humour taking charge of the situation. I am not sure whether I was fair or not, but it happens to me very often.
“Darling, you must have done something bad and forgotten it. Maybe God knows why he is doing this. He is almighty and just and punishes only the wrong people, you yourself said so few days ago, right?”. Yeah, I was sarcastic, because sarcasm is my mother tongue. Whenever I am pissed off I talk in my mother tongue. I am who I am, fair or not. In our real lives, everyone is right in their own way. I don’t think he did not have the right to grieve, but I also had my right to find one shoulder to lean on. So, bad things happen between people, intentionally or unintentionally. This was the start of something which I never wanted in my life, but like cancer it happened. The cracks started to appear.
I was pissed off because he was not seeing that it was me who was supposed to fight for my life, who needed support and who was scared. It was all about him and how he was being punished or whatever that was. Now besides my family, I had one more person to console, convince and take care of. The word Mazoor (meaning disabled) was not something I expected to hear regarding Farheena. We avoided negative words, especially because Rayyan was a very sensitive child. I was hearing it for the first time and I was not happy about it either.
But I calmed myself down in a short span of time, because I had to go through my surgery, keep other chaotic people calm in our home, take care of my children for 10 days of hospitalization which the doctor said was required. I realized this was not the time to be pissed off but to be sensible in handling the Knight who was throwing tantrums about his fate. So, I again went back to consoling him, assuring him everything will be OK and not to worry. This again triggered a lot more complaints from him
“I bought this netted lingerie with so much love. Now you will never be able to wear it”. (yes darling, rub salt in my wound). I replied, “let us wait and see how life turns out. We don’t know. We did not expect bad things to happen but it did, in the same way something good can happen as well”. (Like all of a sudden you become a more sensible person to give me support with different vocabulary).
He came out with a lot of plans he had - the only time he had them was when it wouldn’t work out for us- and how disappointed he was. He was the saddest of all the people around me then. I was consoling him when Farheena woke up. Another torrent of questions started pouring out
“What is wrong with her?”
“Can she talk?”
“Can she walk?”
“What can we do to fix her?”
I invoked the mother of all patience I had in me, to answer him calmly. I think he was very nervous and I pitied him as well. I told him, “We can get back to Farheena and her treatment after tackling the issue on hand right now, that is my cancer and surgery scheduled in 2 days”.
He then came up with a shocking suggestion - “Can you postpone the surgery so that we can check out what alternative medicines we have. Someone mentioned that there is a guy in Kerala who heals cancer, let us try that out before removing the breast”.
I knew here I had to be very firm, much more firmer than the breasts are in our teen years. I told him sternly, “This is my choice of tackling cancer. I am not trying anything else. No use trying to change my mind now when the surgery is scheduled in 2 days”.
“How about a second opinion?” he asked pleading, “maybe this is not cancer. Maybe they made a mistake in diagnosis”. I agreed, though I was very sure that without the lump and only the biopsy report to go by, the doctor himself will not have any other choice but to say out loud what is written in the report. But at that stage, it was tough explaining things to him, so I agreed to visit a doctor the next day in another oncology hospital.
He continued with his droopy face, teary eyes and grief. I was now trying to feed Farheena with bottle milk and I looked at the person who was supposed to be my Knight in shining armour. All of sudden he reminded me of a knight -Don Quixote and I smiled. Farheena returned my smile very sweetly. At that moment I knew I had to smile and go through this for my little ones. I brought forth my own armour and decided to be my own Knight hereafter. That was another silver lining for me.
The smiles that made me a warrior. The little ones were the source of my strength

Promises that shook when cancer struck ..

Change is inevitable 

We promise according to our hopes and perform according to our fears. Francois de La Rochefoucauld

#25SilverLinings - Believing a Lie and Living It

The accusation had driven me angry. Time and tide wait for none… I had calmed myself  down. I am usually very good physically and emotionally when I am angry. It heals me. I know many will not agree with me, but when I am angry I do all the right things. 

Slowly I calmed down and settled to wait for the date of surgery. It was just 20 days, but the days were just crawling slowly at a sloth’s pace. Meanwhile, my sister was an emotional wreck and afraid of what would happen after my surgery. Even though her condition was more serious, she constantly worried about me. Hospice had stepped in and started Morphine for her. When breast cancer is left alone, it can really turn into a scary thing as it progresses. My sister had the courage to deal with it. She dressed the open wound everyday and it was much later that I convinced her to take something for her pain. Until then, she tolerated the pain with OTC painkillers. But as we all know, it is not the physical pain which can destroy you, but the emotional pain. Physical pain has its limit, beyond which you either faint or go numb, but the emotional pain will just destroy you because you are defenseless against it. This is what I saw in my sister who went on deteriorating faster after she got to know about my diagnosis. 

I was trying hard either to assure her that I will be OK or avoid her. We just couldn’t be together without the topic of my cancer cropping up its ugly head and making her emotional. Moreover she doubted my choices. 

The other cranky person I had to deal with was Farheena. I had suddenly weaned her off breast milk and she was not happy with it. Rayyan was playing, singing and trying to calm her down as I tried bottle feeding her. She would push the nipple out and demand for breast milk crying loudly at times. She was a peaceful baby who did not cry much, and seeing her like this was very frustrating. Those times I felt life/God or  something out there was very unfair. 

Due to milk collection, the tenderness in my breast became quite painful, especially on the side where the biopsy had been done. Pus had collected around the stitches and the doctor recommended I get the stitches removed. I was not eager. I felt that since the breast was going to be removed, what is the big deal with the stitches on it? The surgeon who did the biopsy did not want to hear those arguments. He was also a bit upset that I chose another doctor for surgery. He was a general surgeon, but I was damn sure that I wanted a onco surgeon only to operate on me. He said, “I did the biopsy and put those stitches in. I will remove it and finish what I started. You can do whatever you want after that”.  Six ouches later, the threads were out. The breast was looking very nasty and had developed different hues. 

There were times when I would feel a shiver running through my spine. I would feel scared as though I was facing a real monster. But I had to work hard to keep my fears locked within me since my family who were not expressive earlier, had started responding to the news now emotionally. All that I thought was bravery was nothing but numbness that hit them due to the shock of the news. The emotional condition of everyone around me was similar to the orchestra which was moving toward the crescendo. 

The biggest challenge here was to convince everyone around me that I had made the right decision to proceed with my surgery and removal of my breast which would be followed by chemotherapy and radiation.  There were a lot of issues they were worried about and the biggest one was me being OK and alive after the huge surgery. All my energy was being spent convincing my family that I was doing the right thing. They did everything because they loved me and more than me they loved my children. I had no heart to be rude to them or ignore them. I was myself worried and scared. I needed someone to pacify me and tell me everything's going to be alright, but here I was convincing others that I am going to be alright. 

Every negative thing has a positive side to it. Trying to defend my decision and convincing my sister and my family, I ended up convincing myself as well. I am not sure whether it can be called ‘believing your own lie’ because I was not exactly lying but I was not telling the truth either because I was not in control of the future. It is known that  a lie can embed itself in memory and come to feel as real as the truth and that is what happened to me when I was convincing everyone about the successful outcome of my treatment. I became more and more confident with each passing day. 

A week before my surgery I met my doctor to discuss and finalize a few things. He asked me to donate my blood so that it can be used during the surgery. I was a bit skeptical about this, but he explained how my own blood was the  safest blood to transfuse because it eliminated  disease transmission and allergic reactions which could be dangerous. He also explained that my body would start regenerating blood within 24 hours, so not to worry about it. I trusted him completely and went ahead with his suggestions. He asked me about my children, my family etc. He wanted to meet my husband and talk to him as well before going ahead with the surgery. At the end he said, “It felt as though we were talking about having dinner on a weekend rather than about the surgery on a Sunday morning. It is surprising how calm and collected you are”.  That was the result of convincing my family about my success story. I had come to believe it by repeating it day in and day out and now I think I can say I lived it out as well for 25 years.

My dad, myself, my sister and my mom- 4 of us had to fight cancer. 

Just few months before all the hell broke loose.. we were already stuggling during this time.

You can dress and pose whichever way you want, the pain cannot be hidden. I think I can see my own pain here where I am trying to look normal and act cool..

The guy always missing in group pics because he was clicking the pictures. 

Reflections - A-Z Challenge 2021

A to Z Challenge 2021

 I came across the A to Z April 2021 challenge link on 29th of March, so I was late for Theme Reveal, yet that did not deter me from jumping into it. 

My theme for the challenge was - Things that helped me surive cancer for 25 years. Since this April I enter into my 26th year of survival, it made a perfect match for the 26 alphabet. 

Since this was a spontaneous decision, I had to think of the blog everyday and create one because I had just time for a blog after regular working hours. Though at first I wanted to write about what helped me, later I decided to go ahead with something common for everyone. For example, when writing about Letter 'C' - I would say my children were a great motivation for my surival but then that is not the case with everyone. So, I went with being 'Calm' which is very much a part of fighting cancer. Plans kept changing, sometimes it was difficult to choose one topic when ideas were flowing for many of them and they all looked important. 

The stats did not change much for me, though I had comments coming in for the posts. Usually I have visitors without comment left on my blogs, but A-Z challenge visitors left behind comments. It also encouraged me to visit other blogs and leave behind comments. 

I found some amazing blogs to read. I also had great bloggers visiting my blog leaving behind encouraging comments. - Her pictures and posts were as beautiful as her. Arti's coomments were heartwarming always. - Very savvy posts. She  went out of her way to help me set up my profile right so that my blog would have easy access. Trudy had amazing list of movies. I looked forward to reading them everyday. - Her posts took me back to the days of school in St. Joseph's Convent. Found amazing art and another cancer warrior. Anne M Bray- you rock Thank you for your visit.

There were many more blogs I visited but I unable to add them to the list at present. 

I couldn't do the scavenger hunt due to lack of time after a full time job. 

I want to get back to the challenge once again whenever it is announced. 

Thank you everyone

My list of posts for A to Z Challenge 2021

A -  Awareness - Action - Attitude 

B - Bald yet Brave and Bold

C - Calm Despite Cancer 

D - Determination To Change Destiny 

E - Enthusiasm To Enjoy Life

F - Focused Yet Flexible

G- Feel Good With Gratitude

H - Humour Helps You Heal

I - Informative Intelligence

J - Joyful Journey Of Life

K - Kickstart Kindness Now

L - Learn to Listen toYour Body

M - Mind Full to Mindful - A Meaningful Journey

N - Nurture with Nature

O - Open Minded Optimism 

P - Persistant Patience Empowers Perseverance

Q - Quality or Quantity - Dilemma of Treatment

R - Recuperate - Respect Your Rebirth

S - Self Love - Smart Love

T - Thoughts - Tune Them To Triumph

U - Unlock Your Upgrade

V - Victim or Victor, The Choice Is Yours

W - The Watchful Will Win

X - Find Your X-Factor, Be Xtraordinary 

Y - Yes, 'YOU' Matter

Z - Add Zest & Zeal To Your Life


Rayyan Lost in Laptop

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