My Whole Expanse I Cannot See…

I formulate infinity stored deep inside of me…

Sep 16

Tattoo #70: For Tivoli

Category: Life,Tattoos
Tattoo by Fish, Doc Dog's Las Vegas Tattoo, Ybor City

Tattoo by Fish, Doc Dog’s Las Vegas Tattoo, Ybor City

So, this is probably the most difficult post I’ve ever decided to write. I don’t really know where it’s going to go, or how it’s going to go where it needs to go. I just know that it’s something that needs written. This post isn’t just about a tattoo, it’s about a person, the most important person I ever met.

My very first assistant was a woman named, Tivoli, Tivoli Jada O’Neil. Except for in high-school, and only while at school, I’d never had an assistant before, I didn’t leave the house without family. After high-school, from 1999 to 2005, I didn’t have any friends that weren’t online. I didn’t end up going to college. My brother graduated high-school and his life kept going, while mine stopped. I was a very typical disability cliche. I was very bored, and very lonely, and I hated it. I wanted more, I wanted everything my brother had, friends and a girlfriend and going to movies and going to bars and and and, a thousand things, a thousand ands. I had desire without the means to experience any of that desire. Then old-school Republicans in Florida (not the deranged ugly-hearted kind that we have today) passed some laws and funded some programs, and all of sudden, I was interviewing for my first assistant. This was when I met Tivoli.

I don’t think people understand why having an assistant is so different, so freeing, even before the leaving the house phase. Family would take a bullet in the face for you, they love you always, forever, no questions asked, but… they have things to do. If family is turning my head, putting my hand on my chest, moving my hand off my chest, cleaning my glasses, feeding me Jell-O (back when I could still eat Jell-O), any of the twelve zillion things I can’t do for myself, it means that they aren’t doing something they want to be doing. I feel this and I feel… bad. I don’t want to be annoying, put anybody out, I don’t want to be in the way. Obviously, my mom would never say or even think I’m in the way, but it’s family. You’re always going to get, “Turn that music DOWN!” or an annoyed, “Can you wait? I’m on the phone!” As an adult, you just don’t want to hear those things, or the variations of those things on a daily basis. You’ve not nine, you don’t want to feel told what to do. You want to feel the independence of adult-hood. An assistant gives you that feeling. You’re paying someone for a service, their job is to do those things that might otherwise make you feel like a bother.

As I said, I’d never had an assistant outside of school, I didn’t realize how much my world could expand. At first, I just thought I had someone to hang out with so my mom could go places without having to drag me with her. I wasn’t wrong about that part, I didn’t have to go to my mom’s doctor appointments, the grocery-store, disability advocacy meetings, I wasn’t leaving the house yet, but life felt different.

I still remember Tivoli’s introduction e-mail, she said she could be everything from a personal chef to proof-reader, but I shouldn’t ask her to be my hair-stylist unless I wanted my head to look like some kind of topiary. I don’t remember any other applications, or even the other applicants. I interviewed Tivoli first, everyone else was gray compared to her shininess. She was very funny, and I could just see in her cheerful green eyes that she was very smart, which only became obvious after talking with her for a few minutes. She didn’t act at all nervous around astonishingly disabled me, she didn’t talk s-l-o-w-e-r and LOUDER as people often do when first meeting me. Her basic “hire me” pitch was, “I will do anything you need me to do.” She didn’t know what anything might be, and really, neither did I, yet I totally believed her, totally believed in her. I’d only known her ten minutes, but she gave off this air of complete blind confidence, I couldn’t imagine not trusting her. I interviewed the other applicants because I scheduled them and they showed up, but I knew I  wouldn’t meet anyone better… and I didn’t. I e-mailed Tivoli that evening asking if she could start the next day. She did.

For the first time in six years I had someone to talk to (I could still speak back then) who WASN’T online, someone absolutely brilliant, who could make me laugh like nobody ever had. We’d talk about music, art, religion, books, movies, we liked all the same things. We had the same dark sense of humor, we both liked religion, but weren’t religious, we liked weird fiction. We always spent at least half our day listening to music, Aimee Mann, Nirvana, she introduced me to Tori Amos, the Pixies, then we’d switch to watching vampires, zombies, a Christopher Guest comedy, or something serious and weird like, Magnolia. We’d write each other long e-mails after work, on the weekends, continuations of conversations, totally fun, new tangents, or things like, how the rain looked falling against our distance separated windows. We loved each other’s words, ideas. She’s the first person I’d ever really opened up to, completely. I told her my passions, all the things I wanted, things that scared me, I told her everything. I wanted her to know me, the me who felt very alone and very sad much of the time, the me nobody else knew. I wanted her to know everything because if she did, and she didn’t run away screaming, maybe she really did care about me, maybe she wouldn’t just disappear.

Weeks went by, Tivoli didn’t politely quit, find a new job, she stayed. She only wanted to know me more.

I’d just started getting serious about writing, and nobody had ever encouraged me to write like Tivoli. Every idea I had, she’d tell me to write it. She’d make me a cup of hot chocolate, tell me to make my music as loud as I wanted, and to write until I had something for her to read. I was writing a lot, almost every day, and she’d read it all, aloud, exactly the way I heard it in my head. She’d never tell me anything was bad, she’d only praise the strong parts. She knew I knew what didn’t work. She knew that I’d get better given the time. She had a genius-level I.Q. and was extremely well-read, she could have gutted everything that was weak, but she didn’t. She’d only smile, a beautiful, genuine smile, and tell me, “You have to keep going with this, it’s so good.” I think back then, I wrote solely for that smile. In almost no time she was the best friend I ever had, and this stuff was just the beginning.

Aside from hanging out, having fun while my mom ran errands and what-not, Tivoli was learning her job. She was learning how to do all the things I needed throughout the day. At the time, I only wore a mask over my nose to help me breathe; a mask connected to a hose connected to a machine that pushed air into my lungs. The mask attached to my nose by way of these crazy velcro straps that went all around my head. I could go an hour-ish without the mask, unless I was talking a lot, or if I started feeling short of breath and started to panic, which I could easily do. I was always scared I would quit breathing before anyone noticed I had quietly died. I couldn’t speak loudly anyway, short of breath I sounded a whisper. At home I just always wore the mask. Tivoli learned the mask, the crazy stapes, the machine. She learned all the mundane, sometimes awkward things that keep one from resembling a hobo. Once I explained something to her, I never had to explain it again. Tivoli learned everything very fast, she did everything perfectly. None of my early impressions were wrong, none of that early trust misplaced. She backed up all that blind confidence, I knew that I could trust her with my life, which I definitely had to do because… I wanted us to start going out, just us. I asked her what she thought about it, if she wanted to try it. I knew she could do it, but I’d never asked that of anyone, it wasn’t in my very tiny job description. Maybe she’d simply say no. I didn’t know. Before I had time to wonder another second, she said, “Yes, totally, we’ll have fun!” She said, “When do we start?” That was Tivoli, she was never afraid to do anything. She wanted me to experience everything I dreamed of, but couldn’t, as nobody wants to go on their first date with their mom.

Tivoli helped me experience so many firsts. The first place we went alone was Barnes & Noble, it was close to my house, and quiet, a good test run. I bought her my two favorite books, The Etched City by K.J. Bishop and Veniss Underground by Jeff VanderMeer, both of which we would discuss for weeks. It was just a dull chain-bookstore, but I’d never been happier to be anywhere. It was like landing on the Moon. It was independence. After that night, the world was wide open. We bought my all black wardrobe, the first time I’d ever tried on and picked out my own clothes. We went to lots of movies, but the first was really unique, MirrorMask. We went to a weird sci-fi convention. For some reason, someone was dressed as a box of Corn Flakes, because, you know, sci-fi, Corn Flakes… Yeah, we didn’t get it. We went to get my very first tattoo, the luna moth that everybody calls a butterfly. I could do an entire post just about that night. I never felt nervous not wearing my mask when we went places, did things, Tivoli always seemed to know I needed my mask right when I needed it, so I never got short of breath enough to freak out. I think that feeling of abject safety gave me what I needed to try something that seemed so not possible before all this unfettered independence… Dating.

Tivoli gave me the confidence to post that fateful craig’s list personal ad which led to a date, my first date, with Sara. Sara my first love, my first kiss, my first night in someone else’s bed. I could do an entire post on those things too.

Tivoli was my assistant for roughly eight months, eight months that showed me I really could have everything I ever wanted, disability means nothing. I can have anything in the world, so long as I have access to the world. Tivoli gave me that access and showed me the magic I could accomplish with it. Tivoli was fuckin’ awesome, I think that’s how she’d want me to describe her.

A few months ago, I really wanted to talk to Tivoli. I wanted to tell her about some things that were happening, I wanted to know if she was okay. I really wanted to tell her how much I missed her and how much she meant to me. I don’t know why, I just really wanted to say things, everything. She moved away in early 2006. Right after she left, we e-mailed like usual, but the distance slowed everything. Mostly it was my fault, I was so focused on independence, hiring new assistants, trying to build a life with Sara, which I really believed would happen. Then I spent two months in 2007 in the ICU, after I died but didn’t. Sara left twice, the second time forever. I was self-hospitalized for depression after Sara left. My facial surgery, trach problems, sinus problems. Losing my assistants all together. New love, love lost, the hope of finding it again. It’s been a bizarre eight years. None of this is an excuse, it’s just what happened. I have thought about Tivoli every single day, but I didn’t talk to her as much as I meant to, I just thought I’d always have time.

I e-mailed Tivoli to say what I wanted to say, and to just start talking again, like we used to talk. Months went by, no reply. It was weird, we ALWAYS replied to each other, even just once a year, just to say, “Happy birthday!” I thought maybe I’ll find her on Facebook, and I did, but the first thing I saw on her page was, “Happy birthday in Heaven!” I immediately felt scared, the only thing I could think to do was Google her obituary, if I didn’t find it, what I saw was just a sick joke and she was just super busy. Then I saw it, three results down, Tivoli really was, is, gone. I just started crying. Time didn’t care that we still had things to say.

I don’t really know what else to write. It hurts every day. I miss her every day, no matter what’s going on in my life. I still cry every day, usually at night, when it’s dark. I don’t know when that’s going to stop, maybe never. I’ve cried a lot just writing this, I don’t understand why I’m here and she’s not. I feel like, if we had talked like we used to, maybe her life would have been just different enough to avoid the accident that took her away. She was so good to me, and I wasn’t nearly good enough to her later on.

I love Tivoli so much, I love her with every breath I take. I never got to say it one last time, but I hope she knew it.

Tivoli’s always with me, in my heart, and on my skin.


17 Comments so far

  1. Rachel September 16th, 2013 6:43 am

    This is a beautiful tribute.

    I am so sorry for your loss.

    I hope Tivoli’s family gets a chance to see this and know what a huge impact she had on you.

  2. Angi September 16th, 2013 7:39 am

    I am positive that she knew.

  3. Veronica September 16th, 2013 8:09 am

    Oh my God… This is truly heartbreaking. What a beautiful tribute to an amazing woman. She’d love that tattoo – and I’m sure she knew you love her.

  4. Monica September 16th, 2013 8:27 am

    Great post. I’m sorry. I think we all have that person that changed our lives (back in our youth) and with our youth comes this notion that they’ll always be around. It’s a lesson we learn that isn’t true. It’s one of the hardest lessons to learn. I freakin hate it.
    I’m sure she never ever forgot you

  5. Jenny September 16th, 2013 9:44 am

    Tiv was amazing and I loved spending time with the two of you. I’m so sorry to hear she’s gone. 🙁 I also can’t believe it’s been 8 years…

  6. Steven Harnois September 16th, 2013 4:34 pm

    Woah! That is really quite mind fucking! The whole time I was reading your post, I was praying in the back of my mind that the story was not going where it did. Tivoli was an absolute trip. It’s funny that she said that she couldn’t do hair. I remember dyeing your hair purple and red in your back yard with Tivoli. We laughed the whole time. She gave me the confidence that I lacked to do my job well. She was a rebel who didn’t require a license to drive 😉 I remember her telling me she was leaving and didn’t think she was coming back, and she didn’t have the heart to tell you. She loved you! Tivoli was totally Fuckin; Awesome! I am really sorry to hear this Mike. I love you!

  7. Steph September 16th, 2013 6:49 pm

    I can only hope we’ll all be just a little bit better as people after meeting Tivoli through your words.
    Brighter. Shinier. Happier.

    That you’ve marked each of us with your profound love for her.

    I know I will never forget her.

  8. maria X (Mrs. Xenick in your school life) September 16th, 2013 7:55 pm

    Michael, I too hope that her family and friends have the opportunity to read this beautifully written tribute to her. I meant a lot to me, and I never met her until now. The funny thing about time is that it will never diminish the incredible bond that you two shared. Time will pass, but your feelings for her will not. I believe it is safe to say I bet hers for you didn’t diminish either. THANK YOU for sharing this. I read it three times before responding, and cried each time i did so. What powerful words, Michael.

  9. Robin September 16th, 2013 9:40 pm

    I have to believe that they know we love them – I think that’s probably the “parting gift” you receive on your way to Heaven – all the unspoken words of love & admiration from the people you’ve left behind.

  10. josh September 17th, 2013 12:50 am

    This is everything. Thanks for sharing!

  11. Georgette September 17th, 2013 9:03 am

    I’m so sorry for your loss. I’m so glad you had such an amazing person in your life….Thank you so much for sharing your heart….this was the best I’ve read….keep it coming from the heart like this one…it was so sad, but great reading….

  12. Kim September 17th, 2013 1:07 pm

    What a great tribute! As a past personal assistant I could only hope to touch someones life the way you obviously BOTH touched each others!

  13. John September 20th, 2013 7:43 pm


  14. michael November 6th, 2013 10:48 am

    All: I’m definitely way late on this, but… Thank you for your kind words… It’s hard for me to talk about this, but really, thank you.

  15. Joanne Laansky January 17th, 2015 11:22 pm

    Thank you. I just stumbled upon this. I always wanted you to know Tivoli died but wanted to spare you the pain too. Tivoli touched people in ways that almost no one can. There is no way to portray to others who Tivoli was. She touched everyone so deeply in her unique way. Tivoli & I spent much time together during the last years of her life. Our last words to each other 28 hours before she passed away were “I love you”. Please contact me.
    Her Mother, Joanne

  16. Salina Burtnett January 19th, 2015 10:02 pm

    Hi Mike,

    Thank you so much for your beautiful words. You painted a picture of someone so full of life and love that I actually, for a moment, felt her. Thank you for the perfect all encompassing tribute to my sister Tiv. What a gift.

  17. Marie June 17th, 2016 7:20 pm

    This story broke my heart, what a beautiful person she was. It really is true, God takes the good young. May God give you strength, and to her mom who has lost a beautiful daughter, you should be so proud of the woman that you raised and the woman she was. There is no pre-had a gift for mother when you have a child that has such an impact on people in life, and it sounds like she was one in 1 million. My love to all who knew her.