Hello all. I know it has been a while. There is a list of reasons as to why this silence. I have been enjoying life, traveling a bit, going to concerts and relishing the last nice days before winter rolls in. There have been doctors appointments, a couple of ER visits and nights in the hospital. I have also been enjoying time with my family, especially walking my dog and my friends. My priorities have shifted in a big way. I knew this was happening but I am still taken a back by the magnitude.
In this shift I am struggling to find my voice, to live my life here in Chicago. My old life just doesn’t fit anymore. It would be easy if I hadn’t changed and I could just go back to my life as it was. But the reality is my life will never be what is was again. This is sad in many ways but this is good too. There is no longer room in my life for superficial worries for things that really don’t matter. There is priority to the things like filling my life with joy and surrounding myself with love and giving others hope.
Along with all of these good things I still feel untethered. Floating in the universe unsure of my place in it. So it is time in my life to design a new way of living, a new way of being. Accepting the loss of all of the things I can no longer do; while at the same time embracing my new perspective. This daunting task has silenced me and on some days it has paralyzed me. There have been many days when getting myself together and going out to face to the world is just too much to bare. So I keep myself busy in the comfort and silence of home.
Staying at home doesn’t make me happy, but it is easier than dealing with the stares, the questions, the comments. I am person that draws joy from being with others even if it just walking down the street. The more people around the better in my mind. That is why I loved living in Beijing and Shanghai, cities 2.5 x 3 times larger than New York here in the United States. It is why I always have so much energy when I visit New York city. I wish I could describe the energy I feel in these bustling places, the motivation and inspiration in the vibration of the city for me.
And so when I become paralyzed by my life I think back to my latest trip to NYC, with my Mom for the US Open this Sept. It was a trip I will never forget. Man, we got to see so much tennis, Federer, Nadal, Serena, Osaka, Goff.. is just the tip of the long list. But we still found time to wander the streets, soak in the urbanism that is the city. Something interesting kept happening… people kept stopping me and asking for directions. Everytime they asked I knew the answer, and so I helped them find their way. My Mom and I would look at each other shrug and laugh about it as we continued on.
It was on our way home that I had a realization as to why those people were asking me where to go in a city that isn’t mine. At the airport I was tired and incredibly sore. You see in order to enjoy a day at the US Open, I had to carry with me a special backpack made for IV infusions, filed with cold packs, IV hydration, batteries, pumps and supplies. When I want to be away from a home base for a day I have to take loads of stuff with me. One day I’ll weigh that backpack, but it is HEAVY (and worth it). So my back and shoulders were sore and tired. I decided to get a chair massage while waiting for our plane to arrive.
The masseuse was great a native New Yorker, well versed in energy of the body. One of the best massages I have ever had, he loosened my muscles without a second of pain or tension. We finished the massage and he says to me what part of New York are you from? I said Oh I am not, I am headed home to Chicago. He looked at me shocked and said, well you have the energy of a New Yorker more than some real New Yorkers do.
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This isn’t the first time I have heard this, I worked on a team that had several engineering partners that were from New York. And more than one of them told me the same thing years ago. So I began to reflect….. What does it mean to be a New Yorker?
Does it mean that I am abrasive, obnoxious, rude at times, like the stereo type? Always in a hurry? Am I always intense? (Well this one is pretty close most of the time.) What was it, why did so many people I had only met for a second, or had worked with for years think of me as a New Yorker?
And then I started to realize New Yorkers are tough, they are willing to attempt to live life and even at times enjoy the grind. It isn’t easy living in a large metropolitan city. You have to walk with your life in tow, there is no car to leave things in. You carry your life on your back and you walk to public transportation or to your destination. Hopefully you have some cute yet comfortable shoes on your feet to carry you there. You don’t dare wear sandals, they are dirty and they don’t allow you to pick up the speed you need to get anywhere in a decent amount of time. This walk it isn’t leisurely, you are avoiding city sludge (truly a disgusting pheom), watching for cars, trucks, buses, bikes, and tons of other pedestrians.
It is having to get to work with no AC in the summer or heat in the winter. It is continuing on through the rain, wind, sleet and snow. It is having an awareness of others, their locations and their tendencies that allows you to maneuver quickly avoiding any head on collisions. It is being able to fold the slice of pizza and enjoy it while still doing all of the above. It is being able to successfully navigate the streets filled with millions of other people.
It is being able to find solace in that one moment of sunshine between buildings or in the park. It is finding joy in the chaos that to many is just too much to bare. It is knowing when to stand your ground and stick up for yourself. It is knowing when an argument just isn’t worth the effort and continuing on your way. It is being able to sense dangers and avoid it, like that angry crazy guy walking his bike down the street yelling and taunting people he follows just looking for a fight.
I am sure New York is also many other things to millions of other people. But right now this is what it is to me. And when I read this I realize that I do live this every single day. And I have since I was 15 years old. It is called surviving while thriving. I have had to deal with all kinds of sludgy things in my life and yet I still make it a priority to find joy in the little moments. I live my life with great intensity. So yes I see how I can be seen as having the energy of New Yorker and I wear that badge with honor.
So as I try and find my voice and life in this new state of being I look to my energy and determination to help guide me where to go. It isn’t easy, but when is anything that is easy ever truly rewarding?
It is time in my life that I raise my voice about what it means to live with chronic illness. To be a voice and mentor for those that do not have the confidence or energy to raise theirs. I invite all of you on my next chapter where I seek to educate, break down stereotypes and prejudices and reveal the joys and advantages to living with a rare chronic illness. Let’s start the conversation. Hopefully we will learn, laugh, cry and most of all love.
I look forward to seeing you on the journey! Please let me know if there are any topics you would be interested in reading about related to my situation and/or chronic illness.
Onward and Upward!
Show Me Love – Armin Van Buuren and Above and Beyond. Dance like no one is watching 🙂