Thursday, May 10, 2012

Purple Ribbon.

October 2nd, 2010 was just a normal day as any.

I woke up, ate, showered, and checked Facebook, where I responded to a message from my best friend, Kayla. A bit after 3 p.m. I headed to work for a 10 hour shift. After work, I headed up to the roof with one of my employees who had closed with me. We only went up because we wanted to check it out, but we ended up staying there and talking until my boss showed up to open shop in the morning around 8 a.m.

We quickly ran down and parted ways before he could catch us. I wasn't usually up and about at this time of day, so I took advantage of it and grabbed some breakfast at Whataburger.

And then I went home. I went home, checked my Facebook, and intended to sleep until my next 10 hour shift that night. It was supposed to be a normal day.

After logging into Facebook, I responded to another message from Kayla she'd sent some time before I went to work the previous day. I then closed my laptop, ready to curl into bed and sleep. But seconds after closing my laptop I hear the chat noise go off.

I've had this happen many times before and I never open it back up to check who it is. But for some reason, on this day, despite working a long shift and having - literally - no sleep, I decided to check to see who it was.

It was my other best friend Sarah.

"Do you know what's going on with Kay (Kayla)? Has anyone contacted you?"

I asked her what she meant by this, and from the limited information we could gather, Kayla was in the hospital and unconscious. This is all we knew. We called her family and anyone that might know anything until finally the fourth member of our little group, Holly, answered. Holly was already at the hospital several hours away from us and the only additional information she had for us was that Kayla had fallen off of an ATV late the night before. At this point, it didn't seem like anything too serious to us.

Still, Sarah and I immediately wanted to go to the hospital, but I had work. So we decided that even though it'd be past midnight by the time I got off work, we would go then. After deciding this, I went to sleep.

A few hours later, I woke up to both of my parents sitting at my bed side - an extremely unusual, if not entirely singular occurrence. In a soft tone, my mom told me that Kayla was not going to make it. She then preceded to tell me that Sarah was in our living room and to get dressed and that she would drive us to the hospital.

Apparently Holly had called Sarah and I earlier, but I had my phone on silent so I missed it. Sarah, on the other hand, did not and came to answer a phone call from a devastated Holly who told her that they didn't think Kayla was going to make it. Sarah, shocked and not knowing what to do, called my mom and relayed the information she'd just received from Holly. Sarah then told her that she didn't know how to tell me, as she knew that Kayla and I had a particularly close bond, especially at that time.

My mom told her that she would go pick Sarah up at her house, which was about 40 minutes away from us. So my parents picked her up and brought her back to the house, all while I was sleeping, and that's when they told me.


We then made the 3 hour trip to the hospital, and there we would stay for the next 12 hours. No one but family was allowed to see Kayla at this point. Hope that she would pull through began floating around when she started moving her arms and legs a bit. So everyone hoped, and many believed, she might make it.

Being the realist that I am, I looked up information about head injuries and body movements only to find ample information that these movements are hardly indicative of consciousness and brain activity, but instead just involuntary movements and spinal reflexes of the body. This reality hit me hard, and it was difficult to see those holding so strongly to the hope her movements gave them, especially her sister. It made me sad to know they were holding on to so much false hope.

In the morning, Sarah and I decided to get up early and go back to the hospital from our hotel. When we arrived, we were the only ones there, and the nurses allowed us to go in and see Kayla.

I saw my best friend hooked up to tubes that I was all too familiar with. We sat with her and held her hand and talked to her and made jokes to her. We told her that if she made it through we would have our next girl's night in Paris or where ever in the world she wanted to go. Right after saying this, her hand squeezed both of ours. I suddenly understood why others who had experienced her movements were so convinced.

Before she'd squeezed our hands, she simply looked and felt lifeless and heavy and still. Her strong squeeze hit me like a train in reminding me that she was still alive. And it hurt. And it was hard to tell myself that it wasn't voluntary, especially since it occurred at such an appropriate time. She made a few other movements while we talked to her and we left once her parents showed up.

Kayla was taken off life support a couple of hours later.

The funeral service followed 5 days later. Kayla's parents knew that many of Kayla's friends were off at college and they didn't want the funeral to interfere with anyone's school work, so they postponed it until the weekend. They are such kind, considerate, and warm hearted people. But the funeral was one of the hardest days of my life.

Though I'm only 20 years old, I've learned something very important about funerals: The absolute worst place to be at a funeral is in the reserved section.

I've unfortunately attended 7 funerals already, one being a "triple" funeral. Of those, I've sat in the reserved section of 4 of them. There are few worse feelings than this because reserved means you share an extraordinarily close bond with the deceased, usually as family and in some cases, as a best friend.

For Kayla's funeral, her parents allowed me, Sarah, Holly, and her other friend Ashley to sit with them. And at this funeral, purple ribbons were given to everyone in attendance. There was no formal "cause" or "awareness" behind these ribbons. It was simply to remember Kayla, whose favorite color happened to be purple.

And every year we take out our purple ribbons on special days - the anniversary of both her birth and death. Those of us closest to her also wear them for special events such as birthdays, graduation (and her would-be graduation), and weddings. Holly, Sarah and I also wear them on our bi-annual girl's nights we used to share with Kay. We do this because we want to try to live our life as if she were still here. Because, you see, if Kayla were still here, she would be sharing these important life moments and events with us, so wearing our ribbons is our way of including her and feeling her presence with us.

Thus, as of October 9th, 2010, purple ribbons have held great meaning for me.


(I don't ever talk about Kayla or the funeral or anything much related. It's been almost two years, but it is still way too much for my heart to bare. Some day I hope to make a more detailed post about Kayla and everything that happened, but for now, this will have to do.)

A year later I was diagnosed with Fibromyalgia, and for which you are all aware, the color of the awareness/support ribbon is purple.

After finding this out, I decided to look into what else purple ribbons represent. Of course, it represents many, many, things, but among them are a few I can relate to.

These include two other diagnoses I have and heavily struggle with, being ADD and Ulcerative Colitis. Purple ribbons also represent awareness for domestic abuse, which I had over a year of experience with in my last relationship that lead to all sorts of legal shenanigans (though domestic violence is a very serious issue, I do have to state that the second I finally realized I needed to get out, I fortunately no longer suffered any emotional turmoil over the situation. Making this realization most literally set me free and I haven't looked back once. The only aspect of it that even remotely pains me is that I allowed myself to get so low as to be susceptible and tolerant of something I knew was blatantly wrong the entire time it was happening. And although I am no longer  affected by my experience as others with similar experiences tragically are, it remains a part of who I am and I obviously support the cause).

And finally, purple ribbons represent the fight against animal abuse. Given that I'm somewhere in the middle of vegetarian and vegan and have been since I was a child (I never liked meat, but philosophical reasons eventually came into play later on) this adds even further to the appeal. (Note - I hate that I have to clarify this, but I am not a vegetarian of the PETA variety, for many, many reasons).

If you look up ribbon colors and what they represent, you're bound to find something you relate to in one way or another for virtually every color. But I certainly found the most things I could relate to with the purple ribbon.

I'd always planned to wear my ribbon in honor of Kayla on my graduation day. Both Holly and Sarah will be in attendance and wearing theirs, as well. And although we wear them to feel Kay's presence with us on this important day, we'll also be wearing them for a very different reason as well.

Four months ago, several of my doctors advised me not to return to school until my fibromyalgia was more manageable and under control (is fibro ever under control???). With one semester left, I made the difficult decision to push through it and take on the risks, despite a completely unknowable future in relation to my illness, which I was still very new to.

When I finally accepted my diagnosis, I made two goals, one immediate, one long term. The long term goal was to remain happy and avoid the common symptom of depression at all costs (so far, so good). On the other hand, the immediate goal was simply to make it to graduation. And when I started this blog, a big reason for doing so was so that I could blog my way through this semester, as the difficulty of finishing became incredibly clear after just the first week.

And now, with graduation fast approaching I soon discovered that the same day I walk the stage will also be my first Fibromyalgia Awareness day.


I've never really cared about graduation. I don't agree with the commonly held societal belief that a college degree equates to intelligence, qualifications, and capabilities, and I'm also someone who is definitely "not cut out for school." I learn better on my own, and fortunately I actually have a passion for learning. And I still maintain that I've learned more from my own outside reading and research than I've learned from my college courses!

So graduation was pretty meaningless to me. I even begged my mom to allow me to skip the entire ceremony because I just wanted to receive my diploma and go and saw no reason to make a big hoopla out of it. Of course she said no.

But having my graduation end up being on the same day as my first Fibromyalgia Awareness Day since my diagnosis gives it a bit of meaning. This has been one of the most difficult times of my life, and I began this journey with one major goal in mind: graduate on time.

And I did it. I'm proud not because I made it through all of the classes, tests, projects, essays, and all-nighters, but because in the face of adversity, I overcame. From the pain and weakness making it difficult to simply walk to class, to all of the sleep disturbances making it difficult to pull myself out of bed every day and stay out of bed, to the migraines and fibrofog hindering my ability to do my school work, to my sensitivity to smell interfering with my Chemistry labs, to all of the other symptoms that practically made me an alien to some of my peers, I did it. I made it.

Granted, I'm not leaving school with the degree I'd wanted. Up until this semester I'd been double majoring in Political Science and Psychology with a minor in Philosophy, but I only finished my Psych and Philosophy - perhaps one day I'll finish up my poli sci, but for now, I am perfectly content with what I've accomplished.

And tomorrow as I walk that stage, I will be proudly wearing my purple ribbon with my closest friends and family wearing theirs in support of me. Furthermore, with school out of the way, I'll have more time to focus on my situation and truly take the time to figure out this fibromyalgia thing and hopefully find something to help me better manage it.

All in all, I'm proud of myself. There were times I really wasn't confident that I'd be able to carry on and make it, and I'm glad I didn't give up. I hope that all of you fellow fibrobots out there wear your ribbons, t-shirts, or whatever, and contribute to spreading awareness about this debilitating illness. I know y'all will :)






Also, taking a second to get up on my tiny little soapbox here, I ordered some jewelry and silicone bracelets for myself and my family a month ago from Cure4Fibromyalgia.org, and it still hasn't come in! I checked the shipping information on the site and I don't think it'll be here in time as it still says "processing." I know they probably have a lot of orders right now, but they never notified me about anything being back ordered or something indicating that it would take this long to deliver, and they've yet to answer any of my calls or emails. Definitely not a happy camper about that! >:(

1 comment:

  1. Amazing post filled with pain, memories, recollection, and hope.

    Congratulations for pushing through- from one fibrobot to another.

    ReplyDelete