On Saturday, I sat down with fellow Inkwell Council member, Megan Manzano, and Craft Quest’s Ari Augustine and Maria Tureaud for a livestream about writers and self-care. Check it out below.
When I initially created this blog years ago, it was called Pieces of the Puzzle, and it discussed all of the different aspects of who I am. That puzzle is still a work in progress, and every now and then I get a different piece to set in place, and with it, a new understanding of who I am. This time, I didn’t just place a piece, I placed an entire corner of the full picture and gave myself a better understanding of the challenges I’ve faced, and what may come down the road.
I’ve always felt like a complainer. I have back pains due to scoliosis, migraines, pelvic and stomach issues, and I’m always feeling just a little icky. That’s not even to mention my ADHD, my depression, my anxiety…so when a person comes up to me and asks how I’m doing, I have a tendency to smile and say “fine” no matter who they are. Rarely do I admit to all this stuff going on with me, because if you’re in pain every day, and you tell someone every day, it feels like you’re whining. This has been true for nearly fifteen years, but over the last five years, this feeling has intensified. Now, not only did I have these problems, but I had random muscle cramps and spasms in places other than my back, muscle weakness, burning on the bottom of my feet.
Where I used to bop around the office, I started begging off projects that required me to run between floors because I seemed to always have a strained muscle. Where a three mile walk from the office to my doctor’s appointment was never a big deal, the half-mile walk to my son’s school had me limping to the office.
More than anything, I was just exhausted–a person who was always hyper-alert and jumping from project to project, and suddenly, I was falling asleep at the slightest lull in activity. Then my fingers started tingling, like my hand had fallen asleep. Suddenly, I felt crushed by all of the many different things that were bothering me on a day to day basis. If it wasn’t one thing, it was always, invariably, five others.
I still didn’t do anything substantive about it. Wear a wrist brace until the tingling stopped. Put some BenGay on a back muscle, keep my feet warm so they don’t cramp. But these were easy fixes. Nobody needed a doctor for this.
Then a friend of mine was diagnosed with fibromyalgia.
I didn’t know what that was, and I’m never content to have holes in my knowledge base, so I googled and learned. Fibromyalgia is a pain syndrome, and it effects the way pain sensors in your body process pain, amplifying pain signals. It also causes many neurological and muscular issues. The list of symptoms was like a punch to the face. Nearly all of them were things I experienced on a regular basis. I called the doctor and set up an appointment.
I went to my general doctor, and then to a specialist. And now I know.
The pieces of the pain puzzle I’ve been dealing with for years has finally come together, and the image I’ve been building is one of a fibromyalgia sufferer. Surprise!
I have to be honest. When I first got this diagnosis, I wrapped up some things I was handling, then laid down and cried for hours. I completely melted down. Because the questionnaires I had to fill out on the way to diagnosis listed symptoms I hadn’t had yet. LOTS of symptoms I hadn’t had yet. And the anxiety-ridden side of me (see my short story, One Percent, about a girl who genuinely believes she will fall into the 1% of people whose spinal surgery paralyzes them–that may have been based on a true tale), went straight to the worst. I cried, imagining myself unable to play with my son, unable to work, unable to write. I completely tanked out in an image of continual level-10 pain.
Because I had to go there. My brain had to let it out. And the next morning, I woke up ready to fight. Because fibromyalgia doesn’t mean these things for everybody. Because I was already living with this, and giving it a name wasn’t going to change that for the worse. Because I would find a way. Even if every one of the things I worried about the night before came true, I’d still be okay, because I would find a way to cope. Because this is my life, and I’m gonna make the best of it.
Because I’m a badass.
Just now, I’m a badass who knows she has fibromyalgia.
Which, let’s face it, really just makes everything I do that much more badass, right?
The idea for this blog started the day that General/Princess Carrie Fisher Leia passed away (and yes, I wrote it that way for a reason), but it has been festering, the idea gaining more momentum through the loss of Chester Bennington, and culminating now, after the loss of Dolores O’Riordan.
When Carrie Fisher passed, I wrote a few posts on social media about my sadness at losing her, and I got an odd bit of feedback. Also, 2016, otherwise known as the year we all lost some artists we loved, got similar feedback. What I was hearing was people questioning the sadness and grieving of others. I’d see responses like, “sure, it’s sad. But how can you mourn someone you never met?” or “You know how they portray themselves, not who they really are.”
To a certain extent, that’s true. But it’s also true for everybody. We know people, but only as much as they let us know them. People put up walls, they have defenses, they show us the sides of themselves they wish to present. Unless we’re in a person’s inner circle, we probably don’t know what keeps them up at night. But if they were gone, would we still miss them?
With artists, it’s similar, but also so very different. While artists often present themselves in a certain way, we manage to get a window into their deeper emotions through their work. So yes, I do feel like I knew Carrie Fisher. I never met her, but her memoirs and the way she spoke out about her battles with mental health made her feel real and personal to me.
Chester Bennington, lead singer and songwriter for Linkin Park, all but poured his guts into every song he wrote. When Chester committed suicide in July 2017, I was saddened, but ultimately not shocked. The words of his songs had often felt like pleas for help, an acknowledgement that he was struggling, despite often winning that struggle. I identified with every word, having been struggling with anxiety and depression since I was a teenager. I fell in love with Linkin Park around my 20th birthday, and still listen to that first album as well as the many others, 15 years later.
That album was the soundtrack of my battle with depression. Though I never met Chester, his words spoke to a place deep in my heart that knew his pain.
And now Dolores O’Riordan. The Cranberries were an essential piece of my formative years. I loved their rebellious message. I loved their melodious music. I loved Dolores’ distinct voice. Hearing the opening to Zombie still sends chills up my spine.
Do I miss the people in my life? Well, not technically. I can watch Star Wars on DVD any time. I can read Carrie’s memoirs whenever I want. Linkin Park and The Cranberries are still all over my iTunes playlists. I can revisit these lost idols, in exactly the same format through which I initially fell in love with them.
But there was a person behind that art. And when I think of the loss of the life behind the art, the empathy is stronger than it would ever be with a stranger. Because I can imagine the emotions that brought them to create what they did. That emotion gives them a life in my mind that is much more vivid than a nameless stranger. Their art has become a part of my life, and in turn, they live in a part of my brain. They aren’t gone. They are never gone. But they can no longer create more. They can no longer feel the things they felt when they were reaching out and touching my soul, and the souls of so many others.
It is the truly inspiring person, who resonates with so many others, and it is that which we lose. It is that which we mourn.
RIP to all of my heroes, lost in the past and in the future. May your legacy continue in those that have always understood, in those who have appreciated.
“I like this restaurant,” my eight-year-old son politely explained as we ate dinner with friends. “The other one was loud. It didn’t help my anxiety.” He then went on to discuss how much more sense his thoughts make now that he’s on medication. When he left with my husband to use the bathroom, my friend took the opportunity to scoot a little closer to me and ask a question I could see rolling around in her head the minute my son started talking. “Do you really think it’s a good idea to speak so openly about what’s wrong with him?”
This isn’t usually the type of blog I write, but every now and then, I do journey into the personal instead of the professional, and I’ve decided this is a good time to do that.
There’s a lot of mental illness hanging around in my family. I suffer from depression and anxiety and ADHD, and I’m just discovering now, I may have some sensory processing issues. My son inherited pretty much all of this from me and my husband. I also suffer from scoliosis and migraines, and have mild asthma. And just like I wouldn’t hide that from people who know me, I don’t hide the other stuff either.
It’s odd how we seem to have no problem openly discussing physical issues. “I’m sorry, I can’t come out today. I have a migraine,” rolls off the tongue a lot easier than, “Sorry, I can’t come out today. My anxiety is on high and I don’t really think I could handle being around a lot of people.” People don’t accept both in the same way.
But truly, they are the same. There are some things we can’t control. Mental illnesses are caused by chemicals in our brains. So, while they don’t present themselves as physical illnesses, they are actually caused by traceable physical issues.
So, let’s talk about the question my friend asked. I get her asking it. Some people are just uninformed about this sort of thing, and I’m grateful she didn’t ask in front of my son. She seemed to truly understand when I explained it to her (or she humored me REALLY well), so this isn’t some kind of sub-blog hate post or anything. We’re cool.
What it is, however, is me realizing there may be a question worth answering, a question many people may also be asking.
I’m really straightforward with my son about what he’s going through. Not “wrong with” because that’s the wrong word. There’s nothing wrong with my son. But I explain to him the physical reasons he sometimes becomes overwhelmed, or has trouble dealing with his emotions. I’ll try to help give him the words to describe what he’s feeling, or what bothers him. I’ll help him narrow down the things he can tolerate or the things he struggles with.
I want him to accept that this is his reality, rather than trying to hide from it. I want him to learn to live with it, to cope with it. I don’t want him to be in his thirties and wondering why he sees the world differently from others.
It’s the fact that we feel like we can’t talk about these things that feeds the misinformation, the stigma, surrounding mental health. While other people have armchair psychology mental health reform debates from a safe and comfortable distance, my family struggles with such issues from our very living room.
If this country is determined to claim a need for mental health reform, frankly, something needs to be done about it. And that begins with the actual sufferers of mental illness being open about our needs, being open about how our illnesses make us feel and not being scared to discuss exactly who we are. If this is in some way unsafe or uncomfortable for the sufferer, of course they shouldn’t.
For my Logan, he is completely safe to be exactly who he is–that adorable and snarky 3rd grader who struggles with distress from loud noises, trouble focusing, a need to be perfect despite his relatively laidback parents, and a really weird vomit response to pickles. And we will do everything to help his lovable awesome self and keep him happy and safe to be exactly as he is.
Every now and then, when the brain machine is not turning out blog ideas, and I’m stuck in one of the inevitable holding patterns that is the writer’s life, I find myself looking for ideas for blog posts. Of the lists of blog writing prompts I have read through, I rarely find ones I actually want to pursue–after all, the problem with prompts is that they often force a story or a message where there is none. That’s not always a bad thing, but sometimes it can be hell on natural inspiration.
Still, this was one of the fun ones. Here’s a list of what you can find in my bag, my essentials for a day out of the house, and why.
- My headphones. I’d like to share a truth with you that is somewhat personal. I don’t like to be alone in my own head. When I’m spinning out threads of a story, or thinking about a pointed topic, the space in my head isn’t all that bad. However, when my thoughts are roaming without direction, and anything can come to the forefront, it often turns out to be something I do not want there. Because of this, I like to keep music around at all times–because, if my brain is focused on music, at least it’s focused on something. Plus, music has the bonus of helping me brainstorm. So it all comes back around.
- A cleansing towelette, hand sanitizer, band aids. I have a hyperactive eight-year-old son. I think that more than explains that, although those things would be good to possess for just me, as well. But I can’t claim to have been that responsible pre-Logan.
- My migraine pills. I’ve been suffering from migraines for as long as I can remember. At their worst, I would get three crushing headaches a week. Though preventative medication, taken daily, has mostly kept this issue under control and brought the average number of migraines I have down from 3/week to 3/month, I still keep my breakthrough/rescue medication with me daily. As a matter of fact, I just took one now, since today’s rain has my head misbehaving. Taking one of these as soon as I start feeling pain is the difference between an hour of discomfort, and a full day under the covers avoiding the light. They are a necessity.
- My phone. I grew up in an age where payphones were on every other block, and if you needed to reach someone who wasn’t home, you either called and left a message, or you beeped them. Even so, I have definitely become that person who is hyper-attached to my phone, and I’m on it all day. I rarely, if ever, use it for its actual phone function. Mostly I text and email. My handy little gadget provides me with a way to reach others and to be reachable, so I can always be working, since a person who divides her time the way I do needs that. It also provides me with games so I can relax and be silly, and access to social media so I can market and connect. All necessary gadgets for any working woman these days, but especially for a writer.
- My iPad. While the iPad serves somewhat as a backup to my phone functions, it also has one thing my phone doesn’t–ample screen space for reading. So, that’s what I mostly use it for, which means I need it at all times, because I’m always reading. Also, in times of long car rides or long restaurant waits, it’s nice to have a few games to fall back on.
- A Magazine. In case of long stretches without a recharging station for my electronics, I always try to have something manual with me to read.
- A snack. I always have something with me, in case I get super hungry. Sometimes all that’s around are unhealthy options. Sometimes there’s nowhere to buy anything. It’s good to have a quick, easy, neat, and healthy snack with you, so I’ll usual pack a granola bar.
- Pepper Spray. Because I live in Bronx, NY and nobody better f*&$% with me.
- 3 different pens. You never know when you’ll need to write something down…and you never know when your pen will run out of ink.
- A small notebook. Same.
- Wallet and Keys. Because duh.
- Work ID on its awesome retractable belt clip.
- My special necklace. This year, on the first day of summer camp, Logan made me a beaded necklace. Our previous school year was spectacularly explosive, and we discovered that our son’s questionable behavior did not involve a need for discipline, but was actually because he was suffering from a combination of ADHD, anxiety, and depression. A large trigger for his anxiety involved any situation where either me or Ismael weren’t around. After a year like that, when your son makes you a necklace and says it’s a way to communicate with you and to know you are always connected, you keep it with you. Everywhere you go. I like to think it helps out some.
It’s funny. When I started this challenge, I thought it was a fun, silly little exercise, but it’s amazing how much you can tell about me from the contents of my purse. Almost all of the pieces of the puzzle are represented here in one form or another.
Now it’s your turn. Come on, play along with me. What do you carry along with you that tells us the most about you? Let me know in the comments.
Relatively recently, Bryan Hutchinson issued a challenge on his blog, Positive Writer – list 40 reasons why you write. You can see his answers here. When it came about, I was in the throws of Camp NaNoWriMo. As that is now complete, and I’m taking a small break from the novel so I can attack it again in July’s edition of Nano, I needed this challenge. It’s been difficult to stay motivated, because the hits just keep coming in both my personal and professional life. So, I’m going to take some time to remind myself why I write. I hope you find my answers either interesting or inspirational. Also, I am so incredibly late to this challenge.
- Writing keeps my brain busy. With my ADHD, my brain is always spinning anyway, so this gives it something to work on in the background.
- Stories haunt me, and I have to get them out.
- I have had a lot of trauma and strange events in my life, and I need an outlet.
- Sometimes, I like to live vicariously through my characters.
- Sometimes, I like to bury myself in my characters so I can forget life.
- My son looks up to me for creating whole stories all by myself, and there’s no beating that.
- Writing is a strong bond I share with my husband, as he is also an author.
- Writing is a strong bond I share with my sister-in-law. She is also an author.
- Writing has helped me make amazing friendships, some that are sure to be lifelong.
- I like how writing makes me feel, like I am weaving worlds from my imagination.
- The sense of accomplishment I feel when I finally get something right is amazing.
- Rewriting has taught me all about perseverance. Frustration, but perseverance.
- I like to read things I love over and over again, so this was probably a fitting career choice.
- I love to paint with words.
- I love to listen to music, and music always inspires me to paint with my words.
- Clever dialogue is all around me. What would I do if I didn’t jot some of it down and use it for my own benefit?
- My best friend has yoga. I have writing.
- The creative people on my journey with me are the best people.
- My characters tend to be stronger than I am. Or at least, than I was. These days, I seem to be taking a page from my own book. Writing has encouraged me to be stronger.
- I’ve had a lot of people tell me I won’t get anywhere in this business, or something is wrong with the core of a particular story, etc. I intend to prove them very wrong.
- When my anxiety disorder, my depression, my PTSD rears up, writing helps me cope.
- Because, as a woman, and as a woman with physical and mental health issues, my voice and my individual experiences deserve to be heard.
- I love reading so much, and I know how it feels to really connect with a character. I would love to be able to provide that for someone else.
- I’ve always loved playing with voice and word choice, seeing how different an outcome I can create just by finding a more exact bit of syntax.
- Writing often helps me to put feelings I’m dealing with into words, to tell truths through my characters that I can’t articulate properly in reality.
- I honestly don’t know what I would do with all the spare time I’d get if I didn’t write or plan to write.
- When I’m writing I can temporarily put off other, more important chores. But not the most important ones, of course. 😉
- I still believe in magic, and sometimes, writing feels like magic. Like when something inexplicably comes together, and it feels like destiny, that feels like magic. That is the rare moment where I become a believer.
- How else can I justify talking to the people who live in my brain?
- I’m stubborn and I’ve said I’m going to do it, so damn it, I’m going to do it.
- Some of the most fascinating people I’ve ever met write, so I hope some of that rubs off on me.
- Sometimes, I’m not all that adventurous, so I need an excuse to try new and interesting things. Research gives me that excuse.
- I was already a fact hoarder. This gives me a reason to hoard facts.
- I hate waste, and I feel like I have a lot of knowledge and random experiences that just kind of sit around in my brain and go to waste. I want to give them some use. Like my two years working at an ice cream shop. I’m using that in my latest book.
- There are tons of stories that I want to read, that I don’t find out there. I’ve always been a bit of a control freak. They say, if you want something done, do it yourself, right?
- I’m getting to a point where rejections mean almost nothing to me. I’m numb to rejection.
- Unless, they come with constructive criticism, at which point I am disappointed, but I have learned to love constructive criticism and view it as encouragement and help, rather than an insult. I think writing has helped to improve my personality in that way.
- I have also become able to tell the difference between constructive knowledgeable criticism and insults, being led astray, and jealous attacks designed to keep a person below them. That lesson has helped me in all areas of my life.
- I have a side gig as an editor, and I’ve always believed that, if you are going to manage people, you should be willing to get your hands dirty. If I won’t get my hands dirty with words, why should I tell other people to do so?
- I love to geek out. It’s my life’s mission to make other people geek out as much as I do.
So, there are my 40 reasons! Do you need to remind yourself why you love something? Share your reasons in the comments, and thank you for being one of the people I’ve encountered on this journey, the people I write for. Thank you for being one of my reasons. ❤