I am not what happened to me, I am what I choose to become

After taking more time off than I anticipated with this blog I wanted to make an effort to get back at posting more frequently.  Self care is so important and can’t take a backseat because if you don’t take care of yourself you cannot take care of anyone else.

The whole blog idea was to share my experiences as a caretaker and I have so much more to share!  All of these things sprinkled with sunshine, of course!

 

I wanted to take a minute to share some personal things that have been happening. For the past five years, I have been organizing a team for the HD Hope Walk in St. Louis. Last year I was absolutely amazed when my team took first place in fundraising with over $3,500 in contributions!!  First place is great, but each year our team has been in the top spots for fundraising, which is something that has made me so proud!

 

Recently, I was asked to be on the walk board, and I, sort of, reluctantly said yes. I, like all of you, have endless commitments, a job, friends I must keep up with, on top of being a caretaker for my dad. With all of this going on, I was not sure I could take on another role without feeling super overwhelmed. Thankfully, my friends and husband also decided to join the board, and help out when they are able, and that helped make the decision so much easier!!

 

Even though things can be uncomfortable, I understand that growth comes from being uncomfortable, and pushing yourself outside your norms. And you never know what you can accomplish until you push yourself.

 

After joining the board, I found out that MY family was going to be honored at the walk this year and honestly, I was completely overcome with emotions. Just thinking about the endless hardships that we have faced because of HD, the uphill battles, and now our struggle was being recognized – it was just amazing to me. 

 

I have never done a single thing in my life for recognition; I have always just done what was needed because that is who I am. But to be recognized for it has been such a humbling experience. This entire situation has been a surreal out of body experience. It truly makes me realize that the road I am on is exactly where I am supposed to be. Every single thing that I do, even as awkward as it is for me to be this open about my life and our struggles, has brought me to this point. 

 

Just when I thought it could not get any better- I was contacted by man named Matt who works at the Huntington’s Disease headquarters in New York. He reached out to me because he wanted to interview me and share MY story. The interview would be used in our local news and I was blown away by his offer! 

 

Again, digging deep into my soul, where so many dark things lie, I opened up to him about my experiences growing up and he wrote my story. It is really hard to share one’s life experiences that have been so closely guarded, but he took my words and wrote something poetic. I was over the moon with the original plan that I was going to be able to share my story on the local Huntington’s website, but then the story was picked up locally and was shared on other local news outlets. My heart was just so full!! But then my story made it on national news and on the national Huntington’s pages. It was just completely insane!!

 

This was so amazing, and I honestly thought it could not get any better, but, it turns out, I was very happily mistaken. Art Holliday, a local St. Louis news legend, reached out to me requesting an interview. He wanted to share my story on the local KSDK news station to promote the upcoming HD walk!! 

 

When I first received the call, I froze. I was not even sure what to think or what words to say. I just immediately agreed to the interview with zero idea of how I was going to get through it. But as scary as it was, I knew that this was the moment I have been working towards. I needed to use this opportunity to share how awful Huntington’ Disease really is with a very large audience, one that was larger than I ever thought would be possible. 

 

On the day of the interview, I was a ball of nerves. I woke up extremely anxious for so many reasons. Would I be able to convey the message that I wanted? Would I choke on my words? Would I have the courage to say what needed to be said? This entire process is so extremely uncomfortable for me because I never talk about any of this very dark stuff, even with my best friends. And now I have to somehow share this very heavy and deeply personal story with a complete stranger who would broadcast it into the homes of hundreds of thousands of viewers. 

 

Finally, on my way to the interview, blaring Beyoncé ‘Who Run the World?  GIRLS’ it hit me- I was born for this.  This is my calling and there is nobody more covered in love or better prepared for this moment. I feel as if I blacked out during the interview because some of the questions he asked were too heavy to bear, but somehow I found the strength to get through it. I am immensely proud of how the interview turned out, and that I was given the opportunity to reach such a large audience. 

 

Watching the interview for the first was such a high point in my life. All of the shit I have been through was 100 percent worth it because I get to help someone who desperately needs it. Like when I was younger and had no one to turn to for support, someone out there can look to this and me for support- they no longer have to feel alone. That is what this moment really was for me. My struggle officially has a purpose and you can turn to KSDK news to see!

 

I am nobody and I came from nothing. Every single thing I have, I built on my own. The friendships and loving relationships that inspire me daily, the success, and spirit I have are all because I decided I was not going to stop until I had them. We had zero money, but my dad taught me that attitude and determination will always take you where you need to go. There was no easy way out, and sometimes, if you are as lucky as me, you get all of this!!!

 

I share this because I want you to know if you feel like nobody from nothing you can absolutely change your life. I hope this post gives even one person the strength to hang in there when things get really bad and you cannot see a way out. Remember to ask yourself ‘what is this teaching me?’ instead of ‘why is this trying to destroy me?’ Perspective is everything, and holy shit, you never know when all of your efforts will be repaid. 

 

I believe the universe is always listening and when you do good things, it will repay you. Because looooook at me now!

Here is the link to my interview :

https://www.ksdk.com/video/news/local/storytellers/st-louis-woman-shares-her-familys-struggle-with-huntingtons-disease/63-665a68a4-0b3c-4e12-b205-a67b8ac88460

ANDDD

Here is the link to my article:

http://stlouis.hdsa.org/news/-letstalkabouthd-with-mandi

  

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