The Power of Love

Whenever I think of something very strongly, I think I should blog about it. So, here you go.

This is going to be a frustrating, complaining, nagging blog and a much needed one though. And I am sharing this only with some very close friends and family that even matter to us. I have been an over-sensitive person lately, especially since Sam's diagnosis 6 years ago. It has made me vulnerable and I am trying to get used to it. I laugh and cry at a moment's notice. First I thought I was bi-polar and got myself checked. Turns out, I am just a normal person dealing with complex situations and it is natural and amazing how I haven't lost it completely yet.

Most of you reading this should know the situation my husband and I are in. It has been 2 years and we are separated by distance for a year due to his visa issues. For the last 2 years I have been dealing with this supremacy of handling a job, bringing food to the table (exaggerating here), volunteering, taking care of Sam's therapy issues and life in general. And almost everyone has appreciated and  admired me. Thanks. However, there is a hidden hero here. My husband. Since he moved to Seattle (Oct 2010), I have been promoted 3 times at work. That is kind of rare in a company like Microsoft. I have won a Community advocate award in WA state for autism advocacy and am nominated for another at the Disability Summit for Community Service. I could not have done any of these without Sagar. He has been my rock. I have had past issues with our situation and probably complained to some of you until I went to therapy. My therapist made me understand the situation this way. Imagining both of us running to go to work and managing Sam and doing the charity work we do, this break is actually a silver lining. As long as we both are happy, what anyone else thinks should not matter. And giving each other space (literally) has made me understand how challenging it must be for him. He could have just left me and gone or insisted that we moved to India for his benefit. Not once has that ever come up.

Then, am I not the unconventional modern woman that always wants to take charge? I probably earn as much as any other guy out there. We have managed to buy a house, rent out our condo and live happily with a special needs child and a pet. We have everything we need and then some. We always take frequent breaks to help recharge our systems. So, what is wrong with the fact that my husband has chosen to be home and help me out for a few years? Wouldn't you have done that for your wife? Probably not. Because, it is just not the way the world works, correct? But then, have Sagar and I ever followed the rules of the world? Never.

Let me tell you something about us. We are 2 people totally in love. I have said this to many friends and family, we are totally in love with each other and we are capable of giving up things for each other. When I asked Sagar to meet Sam in 2008 and then decide if he wanted to be with me, he said, "I don't care if your son is in a wheel chair, if he is yours, he is mine". How many of you have ever said that to anyone? How many of you have followed your heart? When I went to India, one thing stuck to me very strongly. I saw all the choices my husband could have made. All the other girls he could have married. Something about the daughter of a famous Jeweler, who could have inherited millions of dollars. Sagar could have had the perfect 1 crore wedding with dances, multiple cuisines and what not. Sagar could have had a beautiful wife that made theplas and Khakras for him everyday or someone who was very cool and just traveled the world with him with no baggage (no pun intended). Instead, when we met in 2008, he chose to show me all the movies we missed watching in 7 years, all the dishes we should have cooked for each other, all the laughter we could have shared with each other.

It is not that things changed after our wedding, I have a tough life. He saw it, he lived it every weekend with me. Doctor appointments, therapists coming in and out, constant calls/scheduling, crying at the drop of the hat, he saw everything. He always knew he would never be my first priority ever. Even during those honeymoon days. I gave him a taste of what life would be with me and with no hidden agendas. He completely embraced it. If I have fought with him, if we have had bad moments and situations, it was most probably me just acting crazy and not thinking straight. People who have known me for decades know that I can be an impulsive drama queen sometimes.

I have a very complicated life and am surrounded by complicated friends and that is how I can connect with them. I know a family that has lost their first child to brain tumor and the second child has severe autism and whenever I hang out with them, they just lighten up the room with their sense of humor. My life and suffering is nothing compared to what they have gone through. Losing a child tops the chart of pain and then comes having a physically or mentally disabled child. For once, I am second. :-)

Yes, we don't know what is going to happen next year. We have no idea how much money we will have in 10 years. This is not a race that we need to win. This is a journey that we need to enjoy even if it means not finishing it faster than you or some cousin or some friend. How are we going to plan for another baby, how are we going to raise Sam in this over-complicated materialistic world with conventional family and friends and people in general? The least we need is for you to judge us and form opinions about us. I have decided to consider advise only from people who are walking in our shoes or have walked even a mile with me. If you aren't one of them, then it is probably better to keep your ideas about our life to yourselves. It just makes me nervous and I really don't need that this year. I just need to count my days and get through this year until I see Sagar again.

When we celebrated our virtual anniversary last week, a very close friend of mine texted me that she had seen us go through some toughest times and we have just emerged stronger than ever. That is what we need. We don't need your suggestions, advice, concerns. This is our life and we are absolutely happy and completely in love with each other and the life we have created on our own, our way. We are going through a tough year now, just because, we miss each other terribly. When we met in Paris, Sagar made tea for me every morning. He got tea from India and made some terrible chai. He said, it was months since I had terrible tea and I happily drank it everyday. That is how we are. Yes, we do not have an ordinary life, because we are just extraordinary people. It is time you all accepted that and support us with love, affection and hugs and not with questions, concerns and queries. We are 35 and can totally take care of ourselves and each other. Thank You!  Our love for each other will survive everything. And we have proven it time and time again to ourselves. So, all you people who talk to me or Sagar, In Seattle or India, or anywhere in the world, please be aware that we are not you and let us be ourselves. We are happy this way. Just like you wouldn't want our life, we wouldn't want yours either. Have you ever thought about that?

 

Everyone has problems

This has been on my mind for quite some time now. Let me give you some context. I was sitting with some colleagues the other day and we were celebrating our Q end. These were what I considered my close colleague friends at work. We share some personal frustrations at times. So, we all thought that we should share one problem each. I was so not enthusiastic about this game. Coz, I know I always win this one. The first one went, "My wife doesn't do any work. She is stay-at-home but doesn't cook or clean or do laundry". I said, "hmmm, talk to her about it. She should be able to understand as you have been married for 20 years now!!". I showed some empathy when he wanted to take his ring out of his finger. Drama queen, I thought. The second one went, "Well, I travel a lot and my wife constantly fights with me that I am not around the kids more often". That is a good problem to have as he just got a huge promotion. But, I did understand how important family is and how his stay-at-home wife might feel. I empathized. Then it was my turn, "I said, apart from a divorce and not being with my current husband and custody issues with my ex-husband, my biggest problem is probably finding an assisted living facility that can take care of Sam when he turns 18". Silence. I looked around and one gal went, "Oh Arti, everyone has problems. My husband wastes too much water and we constantly fight about it". I was literally shocked. Literally. I spilled wine all over the table and burst out laughing and excused myself and ended up crying in the restroom. It was that funny and sad. I came back and everyone felt very uncomfortable and I said, hey, let's just celebrate now. The next day each and everyone of them emailed me and said they were sorry I was going through this and I should let them know if I needed any help or support. Duh.

That is my life. I am not saying your problems are not bigger than mine. Maybe they are. Maybe your parent or husband or even your child, sibling or friend has a chronic illness. Maybe, you don't have a job or are not in a satisfying job or marriage. Maybe you were abused. Maybe you don't live the way you want to live. Do you know the difference between you and me? I empathize with you, no matter how small or trivial your problems are and I NEVER say, " Well, everyone has problems". That is called empathy and so many of us lack that. It is sad.

I always wonder why I am so good at what I do. I pick up the phone and the customer yells at me, the company, the products and says, "Arti, I know you are just the messenger, but I am so frustrated". And he could be a guy that has a million dollar house by Lake Washington and Kayaks everyday and has a vacation home in Hawaii. You know what I don't tell him? "Every customer is having similar problems". I say, "Sorry John, I understand. I wish it was different". And THAT, my friend, makes me a better Sales person, friend, wife, mother, a community member and just a human being. Someone told me 2 weeks ago, "Arti, I do not sympathize with you, do not expect me to pity you." That is fair enough. I don't need sympathy, but I do need empathy. If you don't know the difference, then you should probably look it up.

Trust me, these are not even rude comments. I have heard someone say behind my back that they would never wish to have a child with autism and they would probably terminate the pregnancy. News Flash dude, you don't get to diagnose it until age 3 as they do cross most of the milestones during the early years. That is probably the most rude comment I might have heard yet. The second one was when Sam's nurse couldn't contain him when she was giving him shots and there were 4 people holding him down. She ended up announcing, " He must be so difficult". I said, difficult, he could be, but atleast he isn't rude like some people. I think she got the message. You know what my problems are, I raise a child I don't know will ever have a future, I have NEVER had a single conversation with him in the last 9 years, I come home and crave for basic exchange of words, I always worry about future and savings and money, not because I want to go ahead and get a BMW and live in a million dollar house or binge drink and party all night, but to earn so that my son doesn't have to depend on any Govt. aide to live his future years after I am gone. I am still waiting for the day when he would tell me he loves me. I do NOT expect you all to understand, because you cannot. You are not walking in my shoes, you do not live with me, you have not taken care of Sam to even begin to understand what it is like. But, you can atleast empathize. Or just smile and give me a hug. Sometimes words are not even needed, you see.


I discussed this with my therapist today and he gave me a good tip. IGNORE. JUST IGNORE. If the person matters to you, talk to him/her about it and explain your situation. If not, just ignore. I have learnt to ignore a lot lately. He said, "Arti, count the number of people you think empathize and want to know about your situation and help and support you". I counted. CP, RS, TM, JM, SS, TB, DH, KG, MC, VA, VK, GS, SS, SS, ML, AS. I said, "atleast 14 and I know I am forgetting a few". He said, "You know what, Arti. You are extremely fortunate. You have 15 really good friends and you have a way of testing them and I don't. You have 15 friends that appreciate and empathize with you. That you can call in the middle of the night and you know they will take your call. And people like me, we are not so fortunate. I don't think I can count more than 2-3 in my life that I can be so confident about." I smiled. That really helped. And you know who you are.

People forget that autism is a BIG part of me. It does NOT define me, but it does affect me in big ways. And, the big news is, you better learn to empathize with me to be a part of my journey as this is not even a chronic illness that will go away ever. It will stay till Sam is alive and beyond my lifetime.

And that is EXACTLY why I savour every moment of my vacation, whether you like to see my pictures or not. Going to Paris is definitely not a big deal. Going to Paris with my husband and not having to worry about Sam's health, behavior and daily routine is a BIG DEAL.  That vacation will stay with me for the rest of my life. I have learnt to never take anything for granted. So, if you want to go ahead and judge me, it is better to just stay away from me, I think.

When I met my husband in Paris, I was very emotional. I wanted to say so much in 6 days and I hope I said everything and made him feel loved for what he is doing for me and Sam. There was a moment when I burst out crying and said, "Life is so complicated. When does it end?". You know what he did not say? Everyone has problems!!! He said, "It is ok, we will get through it together". And here is this guy that had nothing to do with me or Sam 5 years ago and completely and totally embraced us as a part of him. I am yet to meet another human being that has done that. People worry about money, job, future of their kids, girlfriends, cheating, not having a cool car or a million dollar house, bonuses, promotion or taking vacations, not getting better grades, not having a husband who doesn't waste water :-). And here we are, the 3 of us, outcasts, living our lives, trying to just fit in. Trying to just help people understand the fact that LOVE is all you need to get through these few years on earth. Love, empathy, compassion. You call me tomorrow and bitch about your in-laws or husband not doing enough for you. You know what I am going to say, "It is ok. Everything will be fine. Just take deep breaths and it is all temporary".

And saying that people, is so much better than saying, "My son has autism and you are worried about your in-laws?". Nope, you know why? Because I have empathy, compassion and love for my friends. I think you get my point.

Amen!