I wasn’t sure where to go from that last post, life happened, it went on. But in reality that’s where I got stuck, I let fear take over even if I would not have admitted it then. I was afraid of what people would say and I hated getting those looks. You know the ones, the look of pity because I was young and had this life tragedy happen. So I did what I did best and I pushed it all away, deep down somewhere, where that seed of fear would be left to spread beneath the surface unseen and undetected. I decided that I would choose who to tell and when to tell them. At first it was just my parents, and then it was my grandparents, 4 months went by before I told my sister, and I waited 10 months before telling the guy I was dating. Few friends knew and barely any family. I thought I was doing what was right for me, when I was actually strangling my support system. This fear of people knowing had me in cold sweats when I had to tell someone new. But I was stubborn, I refused to acknowledge this fear, because I felt I had to be brave and strong for those around me.
I went through years of riding this roller coaster. I got poked by needles, I had multiple doctors, and I even traveled across the country to seek answers. Over the years I slowly learned to accept the unknown, and to reach out to others. I’m still playing the waiting game, still have multiple doctors, still get poked by needles, still take a dozen pills, still struggle with side effects, still get tired, still have a hard time keeping my weight up, and still I live. Because in all of this I’ve learned that life is unexpected, no one has a crystal ball. You can make choice after choice and still you can not control the consequence of the choice.
So I continue to live with this disease and a transplant may be right around the corner, but I no longer let it define me. That is the important lesson: YOU and only you can define who you are, your aliments are only a part of you; they are not who you are. You have to live life to the fullest, pursue your passions and goals, and leave fear in the dust. Life is a journey, maybe it will take unexpected turns, but you are still a traveler in it and the only direction that can be taken is forward. So embrace what God has given to you and make something great happen!