About Bionicbladderboo
Howdy y’all! I’m Tiff. If you don’t know my history, at a first glance, all people usually see is a bunch of machinery, but in reality I’m just like any other normal person inside, with so much to celebrate about life! I have my own interests, hobbies, passions, and lots n’ lots of dreams. My body may not be able to function, and I may only have very limited movement in my hands and arms, inside however, my brain is beaming with unique thoughts and ideas that I love to share!
I love science, animals (especially rodents!), small scale LEGO’s, glitter art, symphonic metal music, and interior design! If you take the time to get to know me, you might find we have a lot more in common than you think! I’m just living with a degenerative neuromuscular disease and multiple chronic illnesses that make my life a little different than the norm. The things that typically stand out first when meeting me aside from all the machinery & tubing is that I’m unable to move much more than my arms and hands at a snail pace and use assistive technology to communicate, and have permanently heavy ptosis of my eyelid muscles (not asleep y’all!).
So how did I get here ya might ask? I first got thrust into the world of chronic illness when I was diagnosed with a very aggressive metastatic cancer back in 2005, which wrecked havoc on my internal organs and my entire central nervous system. The intensive treatments like chemotherapy and 14 invasive surgeries really did a number on me, which caused irreparable damage and changes to my body that I would have to learn to adjust living with. Since the cancer took precedence over all my other symptoms, other underlying conditions including a muscle-deterotiating disease were brewing inside unchecked and progressing slowly until I lost more and more of my physical abilities.
Only in the last 5 years when I lost complete ability to walk, talk, even smile, and when my body became completely debilitated, did the doctors finally start listening and focusing on other areas.
Sure enough, they found that I had several other conditions that had gone undiscovered for the longest time, including an excruciatingly painful condition called Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy (CRPS/RSD), and the degenerative neuromuscular disease that affects me most. The other conditions that have the biggest impacts on my day to day life are related to my genitourinary, pulmonological, and autoimmune systems, but I’ll go more into detail about all my conditions in a later blog entry. Though it’s been challenging adapting as my body continues to change and lose more functions, what I’ve learned is that when a body becomes disabled it’s just a natural variation of life and the human experience. It’s taken me a while, but I’ve finally come to a point where I can see myself and my ever-changing body like a shape shifting butterfly.
My body has transformed a lot over the years, first starting with the cancer and now with the neuromuscular disease, but I’ve come to embrace and celebrate this vessel exactly the way it is, and I want everyone reading this to be able to feel that same inner peace with their own bodies too! Like a butterfly straight outta the cocoon, I feel at peace with my body, found self-acceptance, self-esteem, and inner freedom now. There’s still so much to celebrate in my life, and so much to celebrate about yours too!
So come hang out, check things out, and chillax here with me. I want you to feel like this website is your home, where you can be yourself freely, let out every feeling without fear of judgement, and know that you are welcomed and appreciated here at the bionic house exactly as you are.
Come on down and kick back with me here at the bionic virtual casa, get comfy, and let me give you a peek about a few key points summing up what this website’s core heart is all about:
1) All bodies are good bodies, perfect and valuable just the way they are!
2) Each and every life is worth celebrating!
3) Be your awesome self fearlessly, and be proud of who you are!
4) Diversity is what makes us beautiful as a human race, embrace what makes you and your body unique!
5) No matter how much your body may change or how many abilities you lose, inside your core essence you’ll always be you boo!
6) Accessibility is a human right, not a luxury or privilege. Accessibility is for all!
7 ) Inclusive representation is crucial to expanding society’s concepts of beauty and breaking down toxic body standards.
8) Disability is not a bad word, let’s normalize it and open up discussion!
9) The more we learn, the more we grow and the closer we get to ending the stigma. It’s time for a worldwide shift to dismantle systemic ableism once and for all!
10) Together, we can and WILL change the world!