After the passing of my cousin, I needed some time away to regroup and allow myself to heal, which is something I rarely do. I love helping people, and I often jump into things head first without considering or addressing my own feelings.
So, after I spoke with Geno’s immediate family and doing what I could to help them with his sudden passing, I realized that I needed to deal with my own feelings of how I am impacted by this disease.
I do my best to find peace in my efforts, knowing that what I do for HD matters, but this loss still cuts so much deeper.
He was only 36. I am 31. Does this mean there is a possibility that I may not make it to 40? Being at risk for a hereditary disease, especially something as horrific as HD, these questions are always in the back of your mind, but they become much more prevalent when someone you love passes. Especially when that person was taken by the disease.
I do everything humanly possible to avoid going there, down this rabbit hole. But, unfortunately, it is my reality- and some days, I cannot escape it. With each day that has passed, I have slowly begun to tap into some magical inner strength that has allowed me to keep going. Although, Geno’s sudden passing was enough to send me over the edge, it also happened to be in conjunction with my dad’s rapid decline that is getting progressively worse each month.
As any caregiver knows, there is no break- even when things are really bad and you just need to hit the pause button for a second to catch your breath. In our world, there is no pause button. We know that no matter what life throws at us, no matter how bad it gets, we have to hold it together for our loved one because they are depending on us.
Thankfully, my dad must have known how desperately I needed him recently because we got a couple of great laughs. Seeing his face light up with laughter is indescribable. I think the closest I can come to accurately describing it is a level of pure bliss. There is absolutely nothing in the world like it, and there is no better reward for me, as his caregiver. Even though, he can no longer articulate his appreciation, I know with a giant grin from him I am exactly where I am supposed to be doing exactly what I was put on this Earth to do. That is my sunshine and rainbow explosion.
In addition to dealing with my feelings, something very close to what I would consider a miracle occurred. I received a message from a local girl, close to my age, who was getting ready to be tested for Huntington’s Disease. While she was researching some information for her family, she came across my blog on a support group where I post my updates. She explained to me that she had never met anyone who had ever dealt with HD before and she wanted to meet.
During our conversations, we both got chills because of the similarities in our stories. It was pretty eerie. After some more conversation, we finally settled on a day and time to meet for dinner. When we finally met, we both admitted our anxiety about meeting the other person, but ultimately that we were more relieved to talk to someone who truly understood what we have gone through and what we are facing.
This dinner lasted for five hours, all of which we talked nonstop and could have easily talked for another five hours. We parted ways that evening as friends, and met the following week at a support group, which was exactly what we both needed!
Before our official meeting she had already met with the social worker at the Center for Excellence at Washington University and had her blood drawn for the test. The social worker, Stacy was ecstatic that we met and told her I was the best person for her to know through this process. For me, there is no greater compliment, this was pretty much like Gandhi giving me a compliment for being an good human being. You see, I have been working with Stacy for the 10 years that my dad has been going to Washington University. I am very active in the studies and I have been in contact with Stacy with questions or concerns so many times over the years that it would be impossible to count. She has been an angel on Earth who has guided me when I was alone with zero help or information. She was there in a time that I could have easily given up, but she made sure that I knew she was just a call or email away. Her guidance through the years is something for which I am eternally grateful. To hear her tell someone that I am the right person to meet gives me such reassurance that all this struggle is worth it.
To have been allowed the chance to connect with someone who knows what I have been through and is facing the same fate is such a rare occurrence. It is not only rare, but it was such a relief. To discuss certain aspects of my life or HD and they just get what you are saying. It was something that I haven’t ever experienced before. But there I was, sitting at dinner with this wonderful person sharing our experiences and we both wholly understood each other. I do not think I was even aware how gratifying that could be and I also do not think I realized how bad I needed that release.
When I began this blog, my ultimate, and what I thought to be completely far-fetched, goal for my blog was to help one person. That was it, one person. I had no idea it would happen so soon or even at all. The girl I met told me that my blog gave her hope, but also a new way to look at a diagnosis. She stated that she knows that now she has an option to live an exciting life and her perspective had been adjusted because she now understands how much more there is to life. Not only did I help her, she also shared my blog with her husband and her dad, and she said it helped them see through this darkness.
Sometimes in life, we receive hidden blessings and meeting her has been one for me. I did not realize how bad I needed someone who understood. This was just as life altering for me as it was for her. One of the most important things that I want to do with my time is to show people life can be everything you want it to be if you decide to make it that way. She even told me seeing how strong I am through all of this shows her that how you live your life really does make a difference. These words show that I have helped someone find their inner strength and I can barely put into words how that makes me feel, I am beyond cloud 9. What seemed to be an unattainable goal has been met, but little did I know how it was going to make such a significant impact on me…. but I am definitely not stopping here.
Sometimes, when reflecting, I consider why things happen at certain times in our lives. This came to me in a time where I was struggling dearly to find meaning. For whatever reason, it was sent to me. I am grateful because I have been resurrected. I am back and better than ever with that internal fire that is burning bright! Life is such a blessing in so many random ways, open your heart and let them in.