18th GTBAD Letter

October 22, 2015

Happy Fall Dear Family! It’s that time of year when leaves change and fall, when orange IS the new black, and when a certain someone goes crazy for pumpkins, giant pumpkins. Yes, I have an addiction that I am only slightly ashamed to admit. Among other things, October is also that time of year for an anniversary, my Glad to Be Alive Day—my 18^th to be exact. Because my 30^th birthday is only a few short months away, I feel more an adult than ever, especially given that I’m celebrating my second 18^th “birthday”.

I know for some of you, you’ll be reading this letter after the date, and I want to start with an apology for not writing this sooner. To be completely honest and open which some of you know is hard for me, I didn’t want to write a letter this year at all. I’ll pause for a moment to let that settle in. That’s right; I didn’t want to mark this year’s GTBAD with the one tradition that has not changed in eighteen years.

Which leads to the next admission from me: I am tired.  No, I am not merely speaking of the kind of tired that you get because you haven’t slept well or went to bed too late. Nor is it the kind of tired that you get when you have chronic illness or acute illness where every minute of every day is filled with a body’s battle to survive. I am talking about the soul crushing tiredness, and let’s be honest depression, that comes with eighteen years’ worth of medical complications that have left both my body and my mind kind of done. Which for me is pretty unheard of. Because remember those eighteen years? Those years never completely took me down quite like this.

For me, a lot of my struggle is that I am finally processing what happened last year around this time when we received the news about the BO, bronchiolitis obliterans. I would like to point out that BO might be more accurate than you think. Those night sweats from the steroids can leave you quite stinky. At this point last year, the idea of new limitations had yet to set in. I thought, “Take some medicine. You’ll feel great,” and I did. But with massive steroids comes massive side effects which are minimized by stretching out the steroids to longer periods where I don’t get that amazingly false feeling of being healthy. So, I started to overdo it and overdo it. At twenty-nine,
I thought, “Step it up Emily. Now you need to be a responsible adult.”

And then my mom got really sick in March. Like needed to be in the hospital but refused to give in sick…wonder who she gets that from. She’s doing much better now, but she is still recovering. Because I know it’ll amuse her, she’s on oxygen now due to low oxygen saturations, and she likes to call us the oxygen twins, our own little circus.

With her sick, I tried to take over a lot of her responsibilities, babysitting my adorable nephew Rowan, household chores, cooking, etc.; again, the adult parts of life. All the while, I still had my own responsibilities, work, my own chores, and managing my own medical issues. Let me just say I failed massively because one of those things on that list got tossed to the wayside and it wasn’t the normal adult responsibilities either. Today, I am paying for wanting to be normal. Sure with exercise and prioritizing my life, I can, and will do better. And no, I did not do myself any major harm, but I have in the process shown to myself that normality may not be in my reach. Above all, that makes me immensely sad because I suppose I always thought that normal would be within my reach.

Before I leave you all in the same state as I am, I want to tell you that there is still joy in my GTBAD this year just as there always is. Because it comes in the form of tomorrows. I have had eighteen years of tomorrows that have made my life incredibly blessed because it gave me the ability to see and do things I never thought possible. Plus, I always hope. I hope that tomorrow is much better than today and this year. I hope that life stops throwing such wicked curveballs at my family and me. I hope that I will learn to manage my health better than I am now. I hope that nothing will keep me down because I KNOW it won’t. This past year has just been an accumulation of bad events, and they happened to get the best of me until now.

Do you want to know MY reason for even having a GTBAD, the reason I write this letter every year even when I sincerely don’t want to? My GTBAD is a chance for me to reconcile all that has gone on the past year and to come to the realization that my life has been, is, and always will be blessed. No matter the small and sometimes big things happening in my life, I got this. My life is amazing and will be amazing because I choose to believe so. So like the old adage, I count my blessings: my parents, my brothers and sisters, my family, my adorable little nephews and my beautiful little niece (yes I now have a niece!), my dearest friends, my faith, my wonderful jobs, my crazy dog, my coffee, my giant pumpkins…Okay, I’m straying a bit, but the idea is that I have food in my stomach, a roof over my head, relative health, and amazing support. Blessed indeed.

On this 18^th Glad to Be Alive Day, I want all of us to remember that positivity is not innate. It has to be worked at, especially as an adult. Our culture and the responsibilities of adulthood can drive the positivity right out of any adult’s life. Adult responsibility stresses us out and makes us incredibly grumpy sometimes, and yes, I am speaking personally, but the key to happiness is balancing it all. My tomorrow is figuring out the balance of my health and what I dream of doing as an adult. I don’t quite know yet what that looks like although I know it won’t look like a normal adult. And that I am learning to accept.

Happy 18^th Glad to Be Alive Day! May you remember you are blessed with all the tomorrows you had and will have in your own life.