Tiny Salutations

Tiny Salutations


Thursday, August 27, 2015

A letter to Felicia Day

Felicia Day, 

First of all,  I hope you read this.  I went to your book signing tour last night in Seattle, and I felt compelled to tell you how important it was to me.

I am a fan, obviously, as everyone else there was.  That in itself makes it special.  For me, though, it was so much more than being an excited fan.  It was my chance to feel like a person for one night.

It's my story behind getting there that makes it more special.  Last night was the first night in a week and a half that I was able to get out of bed, other than taking my son to Children's Hospital for a surgery consult.  Bigger than that, it was the first time in about a year and a half that I was able to do something alone.  Being in a wheelchair alone is tough.  I get stuck a lot, it is incredibly hard to use the restroom alone, it's hard to reach pretty much everything, and if I have an emergency, how will someone know what I need?  My husband is always with me, and if he can't be, then I don't go.  He was supposed to go with me, but a book tour that late at night in Seattle is no place for my three year old (trust me, it would not have gone well).  Since my son also has intense medical needs, we couldn't find anyone else to watch him.  I thought about not going, but it felt important to me... and I'm so glad I went.  I was very anxious.  I had a stomach ache before going inside.  If I needed help, I would be two hours away from someone who knew what to do.  It's just not simple, even though I'm in my twenties, to get up and go somewhere.  Additionally, the night before I had stayed awake all night crying in pain, fervently praying to God to take me.  I had taken all of the pain medicine I could, and it still felt like someone was prying open my rib cage.  I was having trouble breathing on my own, had a fever, was exhausted, and unable to stand or move on my own.  By the time I got home after the book tour, it was worse.  I had to try hard to stay awake on the drive home to make sure I kept breathing, and once home, my machine hard to work hard to keep my airway open, but I was very happy, my signed book on my nightstand.

My signed copy of Felicia Day's new book finding its place on my nightstand among the piles of medical equipment 

This was my first time in the last year and a half that I was alone.  The first time I was independent.  No one accompanying me, nor waiting just outside.  Yes, it's true I got stuck downhill by the front door and a very nice staff gentleman had to come help me back uphill and into the building.  And another time, I needed extra help to find a restroom that I could fit into after getting myself stuck in the doorway of the women's room.  But, I didn't feel like a burden, or a mass of adaptive equipment, or the subject of disapproving glares.  I was just a fan, like everyone else, only sitting down.

When I came up to the table for you to sign my book, you asked why I had waited in line.  I had heard you say that people with small kids or disabilities could go to the front of the line.  Someone even came to check on me and ask if I would like to cut to the front after I had waited about an hour.  I can't drive myself and had told my husband to come back to pick me up at the end.  So I had time to wait.  And it actually felt nice to wait.  I waited, just like everyone else waited.  Don't get me wrong, I thought about it.  Normally by that time in the evening I would be hooked up a machine that helps me breathe for the rest of the night.  And I could feel it.  I was not breathing too well, weak, and had a fever, but if it came down to it, I could still go to the front of the line.  I made it though.  I waited until my turn.  And it felt like an accomplishment in a life that feels like I'm constantly fall short. 

I look up to you.  If I had not gotten sick, I think I would be a lot like you.  Before I was sick, I went after everything I wanted, and usually succeeded, regardless of how much I knew prior to going headstrong into it.  I, too, went to college when I was 16.  I ended up with a Master's degree in biology at age 23.  I've been socially awkward, especially growing up, and wholeheartedly agree with your message to "embrace your weird".  I love nearly all things strange, and although I don't normally man the controller, I play games with my husband by taking charge of the storyline while he gets us through the fight scenes and 'button pushing'.  During your interview at the book tour, you said that everyone should have that thing in their life that makes them feel like they are doing something meaningful.  I have struggled with that.  I start things with good intentions, only to soon realize that doing anything past just getting through the day if often unattainable.  I'm still looking for my niche, but often find that feeling here, at my small blog where I hope to make others with disabilities feel a little less alone.

At the signing table, I also thanked you for helping to raise funds for the Lupus Foundation of America.  Lupus is one of the five autoimmune diseases I have been diagnosed with and is part of why I am in a wheelchair, so sick, and why my son was born at one tiny pound.  The Lupus Foundation raises money for research to find a cure, which is very important, but I think far more important is raising awareness.  Putting your adorable face behind that message is a wonderful way to get this message to many more people that wouldn't have otherwise heard it.  You also said we should meet again sometime, which I won't hold you to, but I wouldn't object to *wink*.

Felicia Day and me! (the little voice in my head begging me not to run over her feet)

So this is a very windy thank you.  Thank you for being weird.  Thank you for telling other people it's okay to be weird.  Thank you for helping people with lupus.  Thank you for being passionate and real.  Thank you for the chance to meet you and get a hug, something I didn't even think was reasonable to write on my bucket list.  Thank you for making this book tour feel important enough to take a chance.  Thank you most for giving me the chance to feel like a real, independent person for a night.  Thank you.
Felicia Day's book tour

For everyone reading this that does not know who Felicia Day is, you should.  You can find her at her website  or her new book You're Never Weird on the Internet (Almost)

Felicia Day's book tour interview

Felicia Day's book tour

Felicia Day's book tour interview- in the University church sanctuary with pretty awesome stained glass windows