It is okay to think that.

It seems like there is always something. On December 31, 2020, I was writing a celebratory post on my fundraiser page. Now January 4, 2021, I am back in this pit of overwhelmingness. As soon as I felt like I could see the light at the end of the tunnel, I remembered what was still to come. How can something so necessary and vital be so challenging to reach? Why is it that when you “pay your dues,” you still end up at the bottom of whatever mountain you are trying to climb? Why is it that you even are hurt when you have endless amounts of love and support from hundreds of people because there is one person who hasn’t shown that love or support? Why is it that when society says go to college, get married, buy a house, start a family, you have to choose between the “American dream” or your overall health, both of which cost relatively the same? When does the battle end? When does the new beginning start? How many obstacles and how much heartbreak does one person have to endure before they should not have to go through anymore? Who even gets to decide something like that?

I mean, are we really in control of our destiny? Or is that something said to promote self-worth? You mean to tell me that although someone does not ask to be born with deformation or a particular need, they have to welcome all things negative and unfortunate with a smile? Should someone be flattered to hear the words “you're so strong, I could not imagine going through what you have been through”? How uncomfortable would those same people feel if someone said back to them, “I wish I couldn’t imagine what it would be like not to have gone through all this.” Do you think it would make things better if life without the pre-existing hurdles were real?

These are the frustrating questions that go through my head when I have to defend myself, my story, and my purpose always. But just as fast as these questions come, the positive reinforcements make their way through and shut them down. When one major inconvenience happens amid someone trying to “rise above,” it can be tricky not to allow these inconveniences to tarnish our thoughts. It is okay to fall victim to these unfair and anxious questions. I have to remind myself that these questions may result from my anxiety, but that does not make them any less valid. The song “The Climb,” which Miley Cyrus performed in 2009, happens to be very relatable. If you have two minutes, google the lyrics and tell me I’m wrong.

No one is more deserving of what you are after than you. Your goals are personal, and they are no one’s business to undermine. I am still struggling with the question, “do I have the right to advocate for myself in this way” and the answer is “Yes” Yes, I do have the right to advocate for myself. Although someone may have the same condition, their story is not the same as mine, just like my story is not theirs. Like I would never tell someone, your story isn’t as impactful as mine or someone else’s; I would not expect someone to say that I don’t have a right to fight for what I deserve.

For the longest time, and even still today I have felt the need to seek approval from those who have no idea of what I have been through nor do they know anything about my process. Recently, I have found myself needing approval more often. I'm starting to wonder if it is because I am learning of many other stories of people living with the same condition as me and these people are advocating hard core! I've tried to block out lymphatic malformation and cystic hygroma for almost a decade, resulting in me no longer learning of any new discoveries or treatments. Seeing all of these wonderful people advocating for LM makes me feel inadequate and uninformed about my own condition. After almost 30 years of thinking there is no advocacy and then learning about an abundance of it makes me wonder "what the hell have I been doing"? I thought I was trying by best to simply live. I have been trying to have the most "normal" life possible and experience all the "normal" things for someone my age.

For as long as I could remember, no matter how hard my family, friends or myself tried to create normalcy in life, I always felt like there was a missing element. Now I am wondering if that missing element was me not embracing who I am. If I worried less about being "normal" and focused more on advocacy for Lymphatic Malformation, would I have felt more at peace with myself? I admit that I gave up on trying to find others with LM a long time ago. It was difficult 10+ years ago to find anyone because social media was not where it is today. Would things be different for me if I had tried to search "Lymphatic Malformation" say, 5 years ago? perhaps. Instead I let the "what-if's" take control and decided against it in fear of disappointment again.