this blog was birthed from 3 lessons I’ve learned during the first 3 months of 2025. life is too short to be silenced. even if just one person reads this and feels less alone, it was worth the vulnerability given to start blogging.
well, fuck it, here I go:
1.
hope doesn’t have to be a miracle. for the past 4 years, I have been tirelessly hoping for a cure to my genetically diseased body. but there is no cure and everyday I seem to further physically decay. this used to fill me with anger and frustration, but now I wake up with acceptance and give my body grace for its inability to heal. hope doesn’t have to be big, in fact, hope is buried in the little things if you look past all the suffering. I used to hope for a magic medicine or for a surgery that would just fix it all. I put so much hope into getting back a life that is no longer mine – eventually I realized this mindset was weighing me down with constant disappointment. and I am not saying I am now hopeless, that I will never get better, but I might not – and I now accept that this is okay. I have learned to rest my hope in the little things and my new understanding of hope actually fills me with a hope that feels real. I hope that someone will be positively impacted by the way I lead my life, I hope a kind conversation will warm the heart of a stranger, I hope that when I leave my house I run into a dog, I hope, simply, that I will be blessed with waking up tomorrow for another day – good or bad, I am here for it. I feel more renewed than ever considering I have spent a large portion of the year so far in hospitals (nothing new there). the newness I feel comes from how I invest my hope. so, in whatever way you are experiencing your own pain and suffering, and we are all incomparably suffering, I hope you are able to find ways to give grace to your hope and that you too wake up tomorrow hopeful, in any little way, for another day.
2.
strength is not always found in numbers. over the years, my social circle has dwindled and this really bothered my sense of self worth. I lost a job I loved where I maintained relationships with hundreds of students and coworkers. I lost my engagement of rigorous discourse with the faculty and students in my grad program. I was no longer able to keep up with friendships and social outings. I lost friends. I missed family events. I missed out on a lot of what I thought life was supposed to be filled with…not that I have ever been particularly social, but I used to feel like I would be missed by many if gone. when I became disabled and the dwindling started, I struggled to understand my purpose if I was only connecting with doctors and a handful of people. I felt small and meaningless and I couldn’t understand why so much time and energy and money was being poured into my life support. I felt like I used to be more and I grieved a very full future I thought I had to live. I always dreamed of making a big impact on the world. I dreamed of being a force to be reckoned with – to be someone memorable by many. but the truth is, and this was shown to me by a handful of extraordinarily special people, worth is not dictated numerically and neither is strength. my circle now may be small, but the handful of people who invest in me is more than enough. as far as leaving this world with impact, I accept that the people I invest in is enough. I want to take the time to thank my small army of support – the people who do the everyday struggle by my side and the people who are far away yet still find the time for a hospital visit, a call, a text, a meme, a gift, a card – thank you for every little thing, I treasure it all. I am also thankful for the kiddos I have been given the opportunity to mentor. thank you for still looking up to me even through my bout with worth. the way you see me fills me with strength, and my ability to impact the few of you is more than enough for me. strength remains regardless of how many people take part in my story. small but true is strength too.
3.
progress is not always evidently forward. I have always been an overachiever, a perfectionist obsessed with wins and gains and self improvement. progress to me was gaged by how much I could accomplish, how many ways I could push myself further in life. becoming sick has slowed me down and I have been forced to reconsider what defines progress. I have struggled with social media because, when I scroll, I see my peers, seemingly moving past me; they are buying homes and starting families, they are traveling the world and embracing new adventures, they are creating careers and following art pursuits and starting businesses and earning degrees. I see them fulfilling dreams I had, and I will be completely honest – this filled me with jealousy and self loathing. I got to a point where I felt so far behind everyone, like there wasn’t enough time to get to where I had thought I needed to be at this point in life. but the truth is – we are all exactly where we need to be and that place is incomparable to the places of others. it is okay to not constantly move forward, it is okay to rest, it is okay to not check off every bullet on the to do list at the end of the day, and it is okay to die with an unfulfilled bucket list. our worth cannot be sustained by progress, because we are all human and we all hit places in life where we feel stuck and can’t move forward. additionally, progress requires reflection. I have learned that there is progress in stillness. trees never move yet grow each year; in the same way, when we sleep, we undergo synaptic homeostasis, which involves a reduction in synapse strength. this process allows our brains to prepare for new experiences and learning. we put so much pressure on the constant bigger and better but that is not a sustainable way of life (our neural foundation tells us this). life is full of seasons and sometimes it’s simply not a season of fast forward. through still reflection and seasons of rest, progress finds strength to rejuvenate forward. if you are progressing in life, I am proud of you, but please remember it is always okay to rest. in the end, you will not care so much about the quantity, but I promise you will carry within you the quality. on the other hand, if you feel stuck like me, please remember there is so much purpose to be found when we slow down. breathe. it’s the little things. with each breathe you take, you’re moving, and it may not be forward, but it matters just the same.
cheers
xoxo, tube girl
Real Life; Tube Life 