What Makes This Chronic Illness Milestone Worth Celebrating

What if one of our purposes was perseverance, to learn and gain meaning in life? We walk through this world, wondering what exactly we are here for, discovering what it is we actually want to fight for.

Living with a chronic illness leaves cracks for unexpected feelings, for the future, the pressures of the world. For myself, this upcoming year marks my coming milestone. I was really unsure if I wanted to “celebrate” this milestone in my chronic illness journey, if it is something I should celebrate at all. The year I first heard the words postural orthostatic tachycardia syndrome (POTS).

A decade… it is surreal, I truly did not dream of 10 years. As I sat on the curb at 16 years old unable to picture tomorrow, now in my rear view mirror I see 10 years of life since that day. To stop, take a moment alone to look back, it catches my breathe; my heart skips a beat. In the last 3,650 or so days, I have lived days of joy, sadness, triumph and pain. I went from being a child to being an adult. I used to stare down an uncertain future. Now I can dream of the next couple of months, something I never thought I would be able to do. In the beginning I did not know how to trust me. I was lost as everything in my life became unfamiliar and days felt like they would never end. Today, I find myself looking forward to things. I still hesitate to get excited about future plans, but I actually plan things now.

I turned 26 years old today. I really wish I could send a postcard to my 16-year-old self. It is hard to believe how much has happened in the last 10 years; frankly it feels like much longer. Every experience both good and bad, a building block in what made me who I am today. Funny to think that it is easy to not give myself credit or to think I do not deserve a pat on the back for my journey to this decade milestone. I look at every day as a chance to do something good, to fight through the hard days and prove that I can be somebody.

Most people have an image in their head of what they want their future to look like. Some people stop dreaming after they build the life they imagined. For me, after every small accomplishment I am preparing to fight for the next challenge or adventure. Sure… maybe I feel like the cards are not stacked in my favor but I promise you one thing, my next decade, I am going places. Who says you have to stop dreaming, why can’t you keep experiencing everything life can offer and will offer you. The one thing this last decade has taught me: stop thinking about what could have been or what could be, and just take the first step. Without thinking about every single outcome that’s possible, take a breathe and just see what happens. I have failed many times but I like getting back up and trying again, trying something new. My life is what I make of it even though I can’t control everything. The future is unwritten, so let’s start writing it one day at a time.

So to all you Mighty, what does a new year really mean to you? Do you celebrate illness milestones?

It is hard to believe, but this little voice in my head many years ago told me I had to write about what I was going through, so I started a journal back in 2013. So to honor my 10 year milestone, here is a snippet of an entry I wrote.

April 2013,

 I noticed that having an illness, it can be very lonely and it’s hard, its something I haven’t figured out how to get rid of. I get mad lately at the littlest things like school, its hard for me to sit and do school for hours, I can do about an hour at a time and it makes me so mad. I remembered a saying the other day, “it gets worse before it gets better.” I think right now I’m at a low in life and I know that something good will come out of this. After a storm there is a rainbow right, well I’m searching for that rainbow.

Today, 10 years later, I can say in response to my 16-year-old self, that rainbow does come and after every rain shower on your hardest of days that rainbow comes back and shines again. We all will have our rainbow, the storms will settle.

In the moment, in the thick of it all, the world can feel so heavy on your heart. With time things can get better and you become stronger. You learn to make your own rainbows, you learn to look back and be proud of the storms you got yourself through. You are Mighty, we are Mighty.

Celebrate. Rejoice. Be proud of you. You did this, you are doing this.