Darkness & Light

I know James just wrote, and I don’t mean to inundate anyone with our ramblings, but for selfish reasons (and a few unselfish ones), I feel the need to expound on the idea of “functional depression”, or at least what it means for me.  I think James really captured what I’ve been feeling and have been unable to put into words.  And in honor of Mental Health Awareness Month, I want to share my own journey with mental health.  Some of you may be able to relate, and it is my hope that in opening myself up to this discussion, it can become a broader one, and those who may be struggling can know they are not alone.

 

The image that heads this post is one that I have not been able to get out of my mind for weeks.  I know it’s a dramatic photo, and I’m sorry if it alarmed anyone; Mira was (and is) fine.  I took the photo as I sat next to her, holding her hand during her EEG.  The image is unedited in any way.  And it’s been haunting me from the moment I first saw it.  Not because it’s bad or scary, but because it seems like such a perfect metaphor for the way I feel: half in darkness, half in light.  All the time.  And until my husband suddenly and magically coined the phrase I’ve struggled for months to grasp, I was haunted by this metaphor and my inability to express it.  

 

This moment was captured at the very end of the EEG, when a strobe light was flashing so brightly and quickly that one almost couldn’t tell it wasn’t a steady beam of light.  But when the light is off, the room is pitch dark.  And when it’s on, it’s almost blindingly bright.  And then there’s all that weird in-between, where you can see what’s going on and it almost seems normal, like a steady beam of light…but you know that it’s not.  You know it’s just the imitation of normalcy, of calm, of comfortable.  You know that at any minute, it can (and will) go dark again, and that any minute, it can (and will) light up the whole room.

 

So that’s how I feel.  Like life is just strobing on me all the time.  That I could fall into darkness at the drop of a hat, while also experiencing the most intense highs, overwhelming lightness, and love I have ever known.  

 

But that most of the time, I’m in that weird in-between, where I sort of just imitate normalcy, calm, and comfort.  I operate in a zone of “functional depression”.  

 

Overall, I think I’ve done a good job of maintaining my mental health through the beginning stages of this journey, and I have a plan (which I’ll discuss later in this post) to remain proactive in my approach.  But I want to talk a little more about what it feels like to precariously balance in the middle of darkness and light.

 

You know that saying that’s super popular right now, “hit me in the feels”?  Or, “I’m feeling all the feels”?  Well, I’m “feeling all the feels” all day, every day.  And it can get exhausting, confusing, and frustrating.  

 

For instance…

 

Last Sunday morning, James went for a long bike ride with his good friend.  I decided to walk Mira up to the coffee shop that’s in our neighborhood, as it was a gorgeous morning and I wanted the exercise (more on that later).  On the way there, I was SO HAPPY.  Like borderline insane happy.  That’s maybe offensive…sorry.   But you get the idea.  We’re talkin’ smiling from ear to ear, singing out loud, skipping…the works, people.  I felt soooooooo good.  Euphoric, even.  

 

Then I got to the coffee shop, and things were still great!  I met this really nice mom who lives a few blocks away and had walked there with her 15-month-old daughter and genuinely wanted to schedule a playdate for our girls.  I was on cloud nine!  A stranger who looked past Mira’s disability and wanted my daughter to play with her daughter??? SCORE!!!!!!!!!!!!!!!!!

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But then another young couple came in with their 15-month-old daughter and everything changed.  The two little girls who could walk went off together and played, and the parents of the new little girl chatted with my new mom friend about the normal things that normal parents of normal children talk about.  Meanwhile, this couple COMPLETELY IGNORED Mira and me while Mira just watched the other little ones run around, her usually present smile and joyful demeanor suddenly gone as she slumped into me, realizing she was no longer the child of interest.  Mind you, all of us are literally right next to each other, and that other couple didn’t even look at me or acknowledge Mira in any way.  On the way out, the little girl’s grandpa, who hadn’t been around before, saw Mira and said excitedly, “Oh, another one!  How old??”  And when I answered 19 months, he paused, then said confusedly, “Oh!”.  And that was it.  Just “Oh!”.  Like the second he figured out Mira was atypical he had zero clue what to do so just did nothing.  He didn’t say goodbye to us.  No one in that family did.  And my heart burst into a zillion pieces and I did everything I could not to just break down right there.  

 

Or this other time…

 

I was on a shuttle on the way to work and two women next to me were talking about a baby.  One asked the other how her little girl was doing and the mom happily rattled off all of the things her baby was up to these days: pulling up on things, cruising, snapping her fingers, and saying “mama” with purpose.  And I thought, “Aww, that’s so cool!”  And then the first lady said, “And how old is she now?”  And the mom said, “She’ll be 9 months next week.”  

 

And I almost vomited.  

 

I’m usually so ok with where Mira is at developmentally, and I long ago stopped referencing milestone charts or comparing her to other children, especially those very near her age in our own family.  But for some reason, on this totally typical morning when I felt absolutely fine, I overheard this and it was like I had been punched hard in the stomach.  I cried all the way into my building.  

 

That’s what gets me the most.  How quickly the darkness takes over the light.  Often, almost always, without warning or rationality.  

 

A few more examples, since these are so fun:

 

We went to Mira’s school last Saturday for a very informative meeting about all of the services available to children with disabilities in Missouri (where we do not live, but are seriously considering moving back to in order to access said resources).  Again, I was almost euphoric listening to the dedicated and passionate speakers who came in to talk about how hopeful we, as parents, should be about our children’s futures, because there really is a lot out there that can help, and a lot of people who will love our kids.  But then out of nowhere, I started crying.  Not happy tears.  Like “holy shit my child is so effing disabled” tears.  James grabbed my knee and we exchanged this look that only parents of children with special needs can exchange.  And in that moment, I just thought, “Fuck it.  I’ve just gotta cry right now.  This is bonkers.”  So I cried for awhile.  And a little more later that day.  

 

Yesterday was a doozy.  I spent about an hour looking up possible medication options for Mira, pretending I knew how to read scientific journals and nodding along like a deranged clown at my desk thinking, “Yeah!  Oh man, I’m really onto something!  I think I know exactly what she needs to take!”  And then after that hour or so, I realized I was in la-la land, I had no idea what I was doing, and that if a miracle drug had been discovered for her, we would know about it.  I realized how truly helpless I am in all of this.  And I got the tell-tale lump in my throat, so I literally sprang from my seat and just walked around outside until I felt somewhat normal again.  

 

But then I learned that a little girl with Mira’s EXACT diagnosis (like same spot in the gene and everything) has to get her DBS removed and replaced because a staph infection spread to her brain.  And I was like, “Nerp!  Not happening!  Peace out, sanity!”  So I got up and walked around crying for awhile.  

 

And THEN…James posted his post, which I didn’t know about in advance.  I read it on my way to my car after work and just…wait for it…started sobbing.  Shocking, I know.  And then it suddenly started raining.  And rather than put up my umbrella or even raise my hood, I just let the rain fall on my face, because in that moment, it felt like the most appropriate thing in the world. #emo

 

About a minute later, the rain suddenly stopped and the sun peeked through.  And I just started laughing.  Yes, like a maniac.  Because why?  The light made its way through the darkness.   #seriouslysoemorightnow

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So that’s a little glimpse into what I feel like all the time.  Cool, right???

 

On to the part where I talk about what I’m doing to take control of my mental health, since the above makes it sound like maybe I’m lying a little about being relatively ok most of the time.  Whoopsie!  

 

  1. I’m on meds.  I’ve mentioned this before, but I think it bears repeating.  Meds are not for everyone, but they are for me.  As you can tell from my over-share above, the medication does not take away my darkness, but it makes swinging back to the light much, much quicker and easier.  Before I was medicated, I would stay in these slumps for days, slam cabinets, have explosive verbal outbursts…all in all, preeetty damn pleasant to be around.  I haven’t done any of that since I’ve been medicated and am now, quite frankly, a goddamn angel.  And James, DON’T YOU DARE CORRECT ME IF I’M WRONG.  
  2. I’m going to start seeing a therapist next month.  I put this off for so long because I didn’t think we could afford it, and wanted to put Mira’s needs before my own.  But I finally got real with myself (and a few other phenomenal special needs moms), and accepted that I can’t do a very good job taking care of her if I’m not taking care of myself.  It’s a cliche, but it’s so true.  Even the knowledge that I’ll soon get more tools in my tool belt for talking myself through the hard times makes me feel a little better.  When I wasn’t medicated or exercising or talking to anyone about what I was going through, I almost started to resent Mira.  I never hurt her, but things got kinda dark there for awhile, and I’d be lying if I said I was always the best (or even safest) version of myself around her.  So for anyone struggling with depression, postpartum, or anything in that vein, I know how you feel and you’re normal and it will be ok…but you need to take care of yourself so you can be the person your loved ones need you to be. And if I can help you get to that place of acceptance in any way, please reach out and I’ll be happy to talk.  
  3. I’m exercising and eating better.  James is doing even better than I am at this, and I am so incredibly proud of him.  But I’m trying, too, and it really is helping.  We both realize that we need to remain physically strong and capable for Mira for as long as possible.  So taking better care of our bodies and working to build muscle, even if it’s not much right now, makes me feel a little more in control of our family’s future, which puts me at ease.  We walk every day, and have incredible conversations on those walks.  I’m currently doing a 30-day squats and abs challenge, too.  It’s silly, and it isn’t much, but it fits into my life and it provides me a small sense of accomplishment, which I need.  I feel stronger already, and look forward to continuing to build strength and practice perseverance.
  4. We’re making an effort to spend more time with other special needs families.  To all of our friends who don’t have special needs children, please know how much we adore and value you, but we feel such a sense of relief and calm when we’re around people who know exactly what we’re going through.  That isn’t to say that we plan to alienate anyone or shrink our circle; we plan to grow it!  We just realize we need some form of support group, so we’re actively working to make that happen.  A big thank you to all of you special needs families who have already helped us in this journey.  Hearing your words and watching you parent has made a tremendous difference in our ability to believe we can do a good job at this.
  5. I tell James everything.  Sometimes I bottle it up for a little longer than I probably should, but I eventually share what’s on my mind and in my heart with him, and he does the same with me.  Those conversations are not easy ones, and they are often accompanied by tears (and wine), but they are so vital to keeping our connection strong and our sadness at bay.  I hope that everyone has someone in their life with whom they feel unashamed to share their worries and fears, and who builds you up when you need it most.  If you don’t, please know that I am here, and I would love to help support you through difficulty, always without judgement.

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So that’s that, I suppose.  My admission that “functional depression” is my modus operandi, but that I’m working hard to lose that second word and just be “functional”.  So many of you have reached out, offered help, shared your own stories, or just shared encouraging words with us.  Thank you so, so much.  We love you more than you know, and it’s through these selfless gestures that slowly but surely, you’re helping more of the light get through the darkness.

Again, in the spirit of Mental Health Awareness Month, please know that if you struggle you are not alone, and if you need help, I am here.

 

Take care (literally) and love to all,

 

Nikki

 

 

 

 

 

 

 

 

1 thought on “Darkness & Light”

  1. Hey. We haven’t talked in years, but good for you for taking care of yourself. If you want to reconnect, let me know (megh.chakrabarti@gmail.com). If not, that’s ok too. My heart goes out to you and your husband.

    I’m told things get better. I hope they do. Take care.

    Like

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