I have grown more in the past two years than any point in my life. After 26 years of living, I finally let myself say three words that, up until 2015, I had never allowed myself to say. One night, all alone, I looked up at God, burst into tears, and screamed, “THIS ISN’T FAIR!”

At Disneyworld with my older sister, pre-transplant. 100 lbs, jaundiced, hair falling out.

At Disneyworld with my older sister, pre-transplant. 100 lbs, jaundiced, hair falling out.

I felt as if I was handed the short end of the stick in so many ways. I was having a quarter-life crisis of sorts, and I just felt so behind in life, through no fault of my own. I was deeply depressed and at the end of my rope, and felt like I was drowning in a never-ending sadness.

The thing I wanted most would never happen – I wanted to get out of my own body.

It’s a very strange feeling to have people tell you how pretty you are when you know how jacked up your insides are. You begin to understand the true superficiality of appearances when your body is constantly betraying you and your mind is never at rest.

Let me explain:

According to doctors, I have two chronic diseases, both autoimmune: ulcerative colitis and sickle cell, and four years ago I had a liver transplant.

Putting on my earrings a couple hours after transplant because priorities.

Putting on my earrings a couple hours after transplant because priorities.

That night, standing in my bathroom, I told God how angry I was with Him. You see, I never had a rebellious stage, so I could not understand what I did to deserve my life. After probably thousands of needle sticks, hundreds of hospital stays, and multiple procedures, I had had it. I was over being strong and smiling through everything, and I had to be honest with myself. I let my heart break, and it was the best thing I ever did. Acknowledging the deep sadness that almost physically hurt was like pruning a tree – I had to break off those dead things from my spirit in order to grow. The end result was a shift in perspective, and more importantly, an appreciation for life…

One year post-transplant.

One year post-transplant.

I would say, “My illnesses don’t define me,” but that’s completely inaccurate. My experience with illnesses taught me just about every lesson I have ever learned:

Some would resent being cooped up in the house during their formative years. Sometimes I still do. I don’t know a lot of pop culture from the years 2000-2013 because I was home. When my peers talk about getting into mischief as children and preteens, I cannot relate. (And don’t even get me started on when people use slang words or innuendo around me…) However, I have gotten to spend a lot of time with me. No one can define me because I know me inside and out. That strength of character doesn’t come easily, and I’m grateful for the time I’ve had with myself. I have learned to be alone, and I have developed an appreciation for quiet times with just me and God. That’s probably my favorite part – hearing His voice better. You know how if your mom, dad, or best friend called from an unknown number, you’d still know who they were by their voice? Same thing here. It’s beautiful.

Sickle cell causes a loss of balance and coordination LOL

Similarly, I do not, by any means, let the doctors’ reports dictate what I can and cannot do. I find it hysterical when doctors tell me my limitations. It’s like, “Oh I can’t ______? Challenge accepted.” I have been told that I can no longer have dairy. If you know me, I don’t think I have eaten unless I have had cheese. And there are no negative consequences. Also, and most heartbreaking (had I accepted it), I have been told four different times that I can no longer dance. You know, sometimes you hear things and just know that they’re lies from the pit of hell. That was one of them. Dance has been a literal lifesaver to me. I do it when I am sad, happy, angry…whatever. To be told that it was the end for me was devastating, until I realized I did not have to accept it. You’ll notice, I keep saying “according to doctors” because there is nothing in life that is a fact except for death. The biggest lesson I have learned is the power inside this little 5 feet and 3 inches. Tapping into that power comes from the determination I have built up to live. When you have had to fight for the very air you breathe, fighting for anything else is small potatoes.

Rappelling down the Embassy Suites to raise money for the Special Olympics

Rappelling down the Embassy Suites to raise money for the Special Olympics

There were some negative things I had to realize as well. For instance, falling in love is kinda scary to me. I never want my significant other to be inconvenienced. But I do know this: when the Right One comes along, I will definitely know it, because he won’t be shaken by this stuff at all.

I choose joy every time. :)

I choose joy every time. 🙂

In a cool way, I feel like I have been trusted with my differences: Sickle cell is caused by a recessive gene. Only 3 out of 1,000 people in the USA have ulcerative colitis. Only 2 out of 100,000 people in the USA have had liver transplants. Out of all the people in the world, God knew I was strong enough.

I’m not saying that like I had anything to do with it. I’ve had an amazing support system in my family and I’ve been hyper-blessed to have encountered the friends I have, but I do give myself a bit of credit for the woman I am becoming. It’s not that I have it all together; I mess up all the time and have to remind myself to live in a way that shows how grateful I am to still be here to write and dance and live and love. Joy is a decision, and I choose it daily. Every day that I wake up in my own bed is another push – more determination to live as fully, happily, and successfully as I can.

I don’t know where I’m going from here, but I promise it won’t be boring.

2 Responses

Leave a Reply

Your email address will not be published.