I've always been the ride or die
It's so very hard to admit my worst fear. I've always been the ride or die, the calm in the storm, the cheerleader in the background, the rock. I overcame so many obstacles in my early life, then lived the bohemian dream and traveled the country with Jack Kerouac whispering in my ear and not a single thing to lose. I was always the endless optimistic, hopeful and honest and loving life like it's meant to be loved. I challenged the universe.
And then I went back home. Took care of the intellectually and developmentally challenged for many years. Gave my life and my soul to them. Ignored my first symptoms for them.
I've always given everything my all. I've written books of poetry that could make you weep. I've hurt so deeply in my soul that I didn't know if I could survive.
But I did. And I found love. And I made my life better.
And now, to have all of the activities, the hobbies, the dreams, stripped away. It's hard. I'm not diagnosed yet, but I will persevere. It sucks. But I will not stop. My brain struggles, my body struggles, my will falters, but my soul will not be stopped.
I am choosing to continue being me, more than I have ever been, because I have gained so much through my life. Even on the darkest days (today being one of them).
And I have faith in you. All of you. On your lowest of lows, on your rock bottom, on your very worst day. I believe in you. I love you. I think you are amazing. And the world is better for having you in it.
And I realize, reading back through this, that I never actually named my fear 🤣. Way to go, cog fog, you've gotten me again.
And that, my friends, is my worst fear. Losing what defines me. Losing my cognitive power. I've always been the clever one, the witty quip with a ton of random and useless knowledge.
And to now see some of that slipping is the worst feeling in the world. Worse than the lack of balance and coordination. Worse than the pain. Worse than slowing down and getting so fatigued I can't move.
I'll still be the ride or die, but who knows if I'll remember why? (Humor is my default... just steer into the spin).
💜
I can't imagine how tough it is to face this fear. You've been through so much and it truly does sound like you've always been such a rock for others. I've seen some of your other comments and I can tell how much support and love you radiate for others. 🧡 It's completely okay to feel scared and frustrated about that fear and you're definitely not alone in worrying about that very fear. Just know that even if things do change, I feel pretty confident that who you are at your core, your humor, and your big heart will always shine through. Like I said, I've already seen it in some of your other comments! I just want you to know that we're here for you, just as you're there for us. Even cheerleaders need help cheering on the team. I hope you're feeling the love from this community being sent your way. 🧡 Kayleigh, Team Member
thank you, you are always so kind and so supportive. It's been a great experience to be able to come to this community with my fears, feelings and insecurities and know that I'm being heard.
I have people in my life that I can talk to, but it comes with a caveat. My husband wants to fix, so always tries to suggest things. My friends at work care but don't understand, so most comments I make are met with questions. And sometimes, I just don't have the bandwidth.
So I very much appreciate coming to this community and being my authentic self and feeling the support and commraderie radiating throughout all of the forums. The sense of connectedness is amazing and a breath of fresh air.
💜
,
I just want to say, thank you for being a part of this community and sharing a part of yourself and your story.
Your words have connected with so many of us. Although we face challenges, we're in this together.
I will be keeping you in my thoughts, Doreen (Team Member)
