I Don't Know Where I am Going but I am On My Way

I don’t  know where I am going but I am on my way.

This time last year I was in bed. I was in my final days of FMLA, had been in and out of the hospital 10 times in 2 months, and had to use a walker.

To say the last year has been a doozy would be an understatement.  I was diagnosed with Lupus, said goodbye to a career that I loved, was on bed rest for 8 straight months, separated from my husband… the list goes on.

I feel like I am living in an alien body most days and I often feel like I am looking at someone else’s life from a window.  Where is the carefully crafted life I dreamed up and built?

The easy answer is that it is gone.  

I grieve that loss.  I have grieved a lot of losses this year actually.  2018 was just one big grief fest. But as I begin to exit the fog, regain some control of my body, and start to see a new dream unfolding I can’t help but feel that maybe I was one of those rare people that was given the opportunity to do things differently this time around.

I spent my ENTIRE adult life thus far working.  Straight out of high school- it was college and a full-time job followed by a full-time job and several side hustles.  In a span of 12 years I took exactly 3 vacations. 2 big ones to Europe from 2004-2006 and a cruise in 2016. You guys- I went TEN YEARS without taking time for myself.  I look back on those years and I can see flashbacks of conversations with friends posted all of the world and it was always one excuse after another but I cannot even begin to tell you how many times the words “I’ve just been swamped, it will get better in a few months” came out of my mouth.  

I look back on my 20s and while I am immensely proud of my career, I am deeply saddened by the fact that I did not really live much.  A few weekend trips with friends that wouldn’t impose on my work schedule and for the 5 years I ran the Senior community, I worked AT LEAST 6 days a week and easily 50+ hours a week- there was never an evening that I didn’t bring some form of work home, I NEVER ignored a phone call from the building or a co-worker, and I typically crept in for a few hours at some point during the weekend so I could have some quiet time to get more stuff done without interruptions.

In my mind, I was doing everything the right way.  I worked hard, I helped others in ANY way I could at any time of the day, I had a padding of savings, a great home, a solid career.   

And then one day it was all gone.  8 months of bed rest and exhaustion gives you a lot of time to think about that perfect life you had cultivated and how quickly it can change.

I live at home with my family now, even that padding of savings and short term disability didn’t save my car or house.  The perfect life I worked so hard for didn’t save me from lifes inevitable promise- that at some point, it isn’t going to go our way.

I refuse to look back with regret.  That isn’t helpful and I learned so many valuable lessons and have so many wonderful memories stored away throughout the last 12 years. What I am taking away from everything is a hope of how I want to live going in to the next chapter of my life:

I have a chronic illness.  One that can be managed, but will never go away.  One that does not promise me good health for years at a time, but promises to be unpredictable and ever changing.  I think if I have learned anything through all of this, it is that we all need to embrace the good days. My life is no longer scripted- I have a dream of what I want going in to my future, and a lot of it includes learning to be flexible and a bit more carefree than I was in the past.  

Most days when I wake up it’s a gamble of how I am going to feel and what the day is going to look like and it feels very strange to have become the woman with no plan.  Yet also very freeing. Freeing to have been given the gift to start over. I wouldn’t have done it on my own. I would have kept the course and never thought about myself, but instead it was taken away and I have this beautiful opportunity to find myself again.  I have this opportunity to laugh more, to spend more time doing things that I love and had given up (like writing, painting, etc.), I have time to wake up in the mornings and for the most part start my day HOWEVER I want to, which most of the time includes an hour cuddling with a giant St. Bernard name Bernie.  I have a chance to take trips, to see those old friends I have been saying “soon” to for YEARS.

And most importantly, I have the chance to find a new career that allows me better balance to take care of myself, and my family.

Most days I have no idea what I am doing.  I just go with the flow and see where my day takes me and if that doesn’t speak volumes about how far I have come than I don’t know what does.  

Lupus isn’t necessarily a gift, but being given the chance to live differently was.  We have one life to live and we have not been promised how long we will be here to get it right.  Hopefully you can learn to be bold, be creative, to be a little selfish and care for yourself, to enjoy the world and people- all without having to be diagnosed to realize how precious our gift of living is.

There is a big life out there waiting for me and this time around I am not going to wait around to live it.  I have no idea what that means, I have very few plans these days, but what I do know is while I might not know what I am doing most of the time, living doesn’t stop so might as well wake up with the intention of being a part of it.

Its ok to be scared, but you have to get out there, open up, love, make mistakes, learn, be stronger, and start all over again.