Hello From the Other Side

Hello from Chicago!! It has been awhile. These last few months have been happy, sad, uplifting, filled with awe at times and disappointing at others but most importantly it has been filled with love and hope.

I envisioned my return home after 14 months away to be a boisterous loud celebration. Afterall we had fought for my life and won, again! I was surprised to find that there was no such thing. Instead of dancing home full of energy and triumph I crawled home tired, ragged and out of breath. When I returned to my life at home I found more comfort in watching my city from my window rather than participate in it. I found solace in just being home in the quiet, our dog curled up in my lap.

Utterly exhausted, that is what I was and still am. You know I have been battling for my life since the day I was born? Yes, there have been times that were easier than others, but I have never possessed a healthy functioning body. Never. Not for a single day of my almost 4 decades on this planet. And it is exhausting.

Wow it feels good to share that. Living with Chronic Illness is a real, daily grid for myself and 40 million other Americans that have to modify their day due to disease. I also wouldn’t change it for a single thing because it is also where I find my strength. It has provided my ability to cope and adapt. It has allowed me to know to take joy in life because nothing is guaranteed. Having another good day of health is a gift that may or may not present itself.

As you know I don’t tend to do anything quietly. It is usually pretty clear where my head is at and where I am headed. So for me to come home and just want to be a silent homebody was just strange. I didn’t know what was going on.

One day after a few weeks at home I started getting the texts, emails…. “Hey how’s it going? You are back in Chicago right?”… My friends and colleagues were also finding this out of character for me. So I tried to go out into the world push back into the old routine. And it was horrible, it made me anxious. I wasn’t having a good time in social situations. It was horrifying. I came home from one outing and sat down and told my husband that I was never going to a happy hour again and started crying.

What the heck was going on?!? I am still processing this. But there are pieces that I have put together. First of all life here went on without me. So I have to get up to speed. Secondly I am different now, I walk around with tubes and bags. I can’t drink… and in Chicago we have a drink with everything. My priorities have shifted. I am on longer chasing the material rewards that don’t provide true wealth. Chicago is different, my friends have evolved, I have changed. It is overwhelming at times. Overwhelming at most times actually.

And then my best friend invited me to the Bahamas with her family for her birthday. There were a million reasons I could have used not to go. Traveling is not easy these days, there is A LOT of stuff to drag along just to keep this girl alive for a few days. I didn’t have a current passport. My luggage had to be tossed a few weeks prior. But I made the effort, and they did too. And it was SO worth it. On that trip I had the realization that I had better embrace what I can do and let go of what I can’t because sometimes you only get 4 days to enjoy paradise with people that you love.

So I am trying. I am attempting to put aside the anxiety, ignore the stares, field the questions about my condition with kindness and celebrate all of the little things I can do. I am tapping into my inner strength to keep my head up and put one foot in front of the other. I still struggle and I find myself with many sleepless nights asking myself the big questions of life. Why I am going through this? What is my purpose now? How much longer can I endure? It is 5:34 am now and I have been up since 3. You should see the sunrise, it is beautiful and amazing, full of such hope and promise for the day. Yeah…. I can sleep later.

But life isn’t the same, and it never will go back to what it was. Life is different now. That is living with Chronic Illness, an evolution of circumstance and ability. And that is ok. Not easy but ok. It is my time to share with the world what it means to live with Chronic Illness, to share my story with the hope that others can relate. That we can all find the strength in it. Sometimes I’ll be dancing to loud music while during others I will be sitting at home with the dog in silence. Both are now equally present and needed in my new life at home.

As I was writing this is the song that came on… dance like no one is watching. Onward and Upward!

Life Goes On (Yes it does, thank goodness)

When you feel like we can't keep tryin'
To make a better way
You gotta hold on

Say you got to believe
You gotta hold on
Cause life goes on

You gotta hold on
Cause life goes on

I woke up at six o'clock in the morning
It was a beautiful day
And I just knew it would be a better morning than yesterday
Sometimes I feel like I just can't get it right
But today I've decided that it's time to live my life

People hold on
Keep it moving
Cause you gotta be strong
Together it won't be long
Things will get better
Cause life goes on

People hold on
Keep it moving
Cause you gotta be strong
Together it won't be long
Things will get better
Cause life goes on

Sometimes I feel like I just can't get it right
But today I've decided it's time to life my life

4 thoughts on “Hello From the Other Side”

  1. As always you amaze me, and you are a good teacher to how we all should live in the moment. I can picture you enjoying being at home with your loving husband and special loving dog. Even though you can’t keep up with the Chicago you knew, I hope you are tuning in to some great “Down Home Chicago” music.❤️

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