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Once more, I am participating in A Chronic Voice’s monthly linkup.

words: Failing, Succeeding, Pausing, Deciding & Thriving

When I read those words, it made me think about one of the worst bouts of depression in my life.  There were a variety of powerful reasons why I was depressed, and a variety of powerful factors in its severity.  There was a lot going on.

I want to share what happened, what the major pieces were, and what I learned about myself in the process.  

I also want to focus on how important the act of pausing, or distancing yourself a bit, and seeing things from a different angle is one of the most useful tools in self-care and self-healing.  

What happened?

One of the biggest themes in my life has been that I’m afraid that I’m going to lose people I love.  

This fear is based on experience – the losses in my life started early, and are the underlying cause of me having my first major depressive episode at the age of 9, after losing 3 family members, a close family friend, and my art teacher over the course of about 3 years.  

The deaths were somewhat clustered – my grandfather and great aunt died within six months of one another, and the other deaths occurred roughly 3 years later over the course of 3 months.

me, on board a boat, holding shrimp between each of my fingers
Late fall, 2002 – One of many things I lost – the opportunity to live on a shrimp boat for weeks at a time! The entire program lost funding, my final trip was December, 2002.

Since then, loss and fears of being alone(and associating alone with unloved) have been this refrain in my life.

I was diagnosed with Conversion Disorder(now renamed Functional Neurological Disorder) in 2003, which contributed to my severe depression, which was at its worst in 2005.

The first thing to understand is that this was not the worst, most painful or most traumatic thing that happened in 2003.

That would be my father’s death. As I mentioned, loss is a big fear of mine – specifically people I love going away and never coming back.

In 2004, my boyfriend, who had been implying I should expect an engagement ring soon, dumped me.

A couple of months later, my roommate announced that she was moving back in with her parents for financial reasons.

I moved into a different apartment with different friends that fall.

They were less responsible than I’d thought, so the expenses were higher than I’d budgeted for, and things were more stressful than I’d hoped.

The depression really started during that time.

That friendship was destroyed by the experience, and when that lease ended, I admitted defeat and moved in with my mother.

Failing

My family was very traumatized by losing my father as abruptly as we had, and moving home only emphasized that trauma and pain for me.

Moving home meant that I was living in the space I had grown up in, making my father’s absence glaringly, painfully, obvious.

When I moved into the house, I moved into my sisters’ bedroom(I have two sisters, identical twins), with the plan being to share the bedroom with one sister, who was coming home for the summer before returning to college.

My former bedroom was being used by her twin, who had moved home to start her teaching career a year earlier.

I was depressed.  I had spent the previous four or five months fighting suicidal ideations on a somewhat regular basis, and was predominantly sleeping with the help of sleeping pills.

I still had urinary urgency issues, but it had calmed down a bit. I wore cloth pads daily to protect myself from leakage.

I had twitching episodes(technically myoclonic jerks) somewhat regularly(at least several times a day), and the more upset or stressed I felt, the worse they were.

I was in a really unhealthy state of mind, but was still pushing myself through and doing my best to appear functional.

Everything felt like a failure.

My period every month was a reminder that I was single, with no prospects for marriage or the children that could follow.

I had failed to keep my perfect partner.

Moving home meant that I had failed to live independently

My every symptom was proof that I had sabotaged myself- and I was failing to control my body or fully connect with my emotions

My symptoms increased if I drove, so I didn’t. Another failure on my part.

It didn’t matter what it was, everything was evidence of my own failure in some way or other.

Succeeding

Within all of that emotional nastiness of that first couple of years, I actually had some amazing successes.

I was just in such a dark state of mind that I just wouldn’t let myself see it.

Ironically, that, too, was a form of success.

3-story pink Victorian house covered in snow
Larkin Lodge, my first and second apartment. I moved into the third-floor apartment January of 2003, and into the first-floor apartment September of 2004.

By June of 2003, I had had strange symptoms for months, had spent a week in the hospital for testing, and had made an appointment with the neurologist who would diagnose me in July.

My primary treatment suggestions were antidepressants and talk therapy – I found the right therapist before I started working again in late August.

In June of 2004, I had been single for about 2 months, was mourning my father’s death seven months earlier, and would receive confirmation of my SSDI benefits in a couple of months.

I had sent in my application in March, right before my boyfriend dumped me.

Because of my symptoms and state of mind, I couldn’t actually sit at the computer and work on it for more than about 10 minutes at a time- I would be rocking so badly, I couldn’t keep my hands on the keyboard.

It took me close to two months to complete my application.

I also recognized that if my symptoms continued at all, it would be practically impossible to do laboratory or fieldwork, or work on a master’s degree in the sciences, so I needed to reevaluate my life plan.

I elected a new field of study and convinced DVRS to register me in an introductory course for September.

I was trying to figure out what my limits were.

I had trouble sleeping and was a bit emotional, but overall, I was managing pretty well.

I got myself a full time paid internship in my chosen field in the summer of 2005.

I had started working part-time about 6 months earlier, shortly after completing my class.

I needed close to 12 hours of sleep a night, but managed all that anyway.

I also was fighting suicidal ideations and feeling severely depressed, despite being appropriately medicated.

I should have been proud of myself – I should have been beaming with pride and delight that I had made it so far.

But I wasn’t.

Pausing

The ability to step back and look at things with new eyes is important for anybody to be able to truly be empathetic and understanding of others.  

Using that pause often takes energy and a willingness to push some limit or other, but having a pause, a moment of mindfulness can be a very effective way to pull oneself into a better state of mind.

My mother helped me recognize that I was depressed when I was 9.  

One rainy day, I was looking out the picture window into our back yard – a beautiful marshy and wooded area – and confided in her ‘I’m trying to think of happy things mom, and I just can’t feel ok.’  

That was a moment of pause, of recognition – self-awareness. I knew that in the past, thinking of happy things made me feel better, and I recognized that it just wasn’t doing the trick anymore.

If I hadn’t recognized that, I’m not sure how long it would have taken for me to recognize my state of mind, or for my mother to be able to help me get help.

My depression and suicidal ideation were actually the best possible signals that my mind and body were healing.

FND/Conversion disorder is the brain’s response to trauma under certain conditions.

It’s a sort of miswiring in the brain.

In my case, the uncertainties in 2002-2003 triggered my brain to ‘protect’ me – by having my emotions be expressed physically in the form of movements and shaking and urgency, instead of me feeling them emotionally.

Dad’s death compounded it all, by adding on a new traumatic event(that precisely lined up with my deepest-held fears and triggers), and so my emotions ‘overflowed’ into more symptoms.

Being abandoned by my boyfriend, only 4 months later, was a new trauma(nowhere near as severe, but still painful).

Also, he had been one of my biggest sources of emotional support through the previous losses. I had clung to this vision of our future only to have him shatter that image, leaving me feeling more alone and unlovable.

I processed it all the best I could, talked things out with my therapist, and generally tried to figure out how to manage it all.

person standing on a mountain, surveying the river and peaks below
Sometimes you need to pause, and really absorb what surrounds you

By the time I moved to the new apartment, I had healed enough that there wasn’t as much need to protect me, and more emotions flowed through.

I could process them now, but they just weren’t fun feelings to deal with.

So, finally, in late 2004, I let myself feel all the pain I’d been through, and allowed myself to go through that dark depression – and, eventually, found some light on the other side.

I never want to wait for years to actually process my emotions again.

I pause and self-assess often now.  I’ve learned the power of the pause and the strength of self-reflection.

I wake up in the morning and tell myself I am feeling great – then feel deeper down to see if that has a ring of truth.  

When it doesn’t, I recognize why and do what I can to correct it.

  • If I’m feeling low I try to find a way to feel better.
  • If I feel tired, I consider if more sleep will help.
  • If I feel low-energy, I recognize that today may be a lower-energy day than I’d hoped and adjusted accordingly.  

When I start to shake, or my teeth start to chatter, or I rock, or limp, I pause.

I take a breath.

I think about my situation, what is happening to me, in the moment.

  • Did I just see or hear something triggering?
  • Was I falling into a destructive thought-cycle?
  • Am I really that tired?
  • Am I not fully expressing my excitement, and it’s spilling over as symptoms?

Sometimes, just taking that breath, that moment, is enough to stop my symptoms.

Other times, I release control a little extra and shake it out.

Sometimes I change my thoughts or activities and give myself a little break.

I have a lot of possible responses.

But the first step, each time, is to pause.

I take a pause, and I listen to myself, and I do what I can to make today the best day it can be.

That’s about all that I can do.  

Deciding

I am proud of myself. Each step on my path, I actively decide to do my best.

When I felt suicidal and had ideations, I didn’t give into them.  

When I recognized those moments of ideation, I saw them for what they were(negative and self-damaging thoughts) and took myself out of the situation the best I could.  

If I was cutting up food, I put the knife away.

When I realized I was considering taking all my sleeping pills, I put the pills out of my control and shared my concern with those I lived with.

My roommate held my pills for me, doling out one a night for a month or so, then my sister helped me the same way after I moved home.

Apparently, my request frightened her a bit, but she did as I asked and by the time she returned to college, I wasn’t tempted anymore.

person in forest, with two paths in front of them.  The right-hand one is shaded and gloomy, the left lighter and strighter
I always strive to pick the lighter path

I reached out and talked to people the moments the thoughts were triggered, so they could help me affirm that that wasn’t what I wanted to do.

I’m also proud because even in the throes of depression I made decisions that would help me in the long run, and kept pushing myself to take the appropriate steps forward.

  • I made appointments and kept them, even if I didn’t get much else done those days, making sure I was getting the treatment and support I needed.
  • I found a new social support system in Birequest, exploring my bisexual identity and making new friends.
  • I got myself out of bed and into work and/or class each day, even if getting up felt impossibly hard.
  • I kept myself going forward instead of giving up – even when I felt like I couldn’t succeed.  

Have there been times I felt like giving up?  Of course.

Have I given up on things? Absolutely.  

Often, I’ll re-prioritize things, sometimes for weeks, months or years.

Other times, like changing careers, I’ll recognize that that dream just wasn’t meant to be – and adjust my expectations.

I have had a lot of times where I couldn’t do something ‘today’, but then I’d make sure that I did it the next day, or the day after.  

I can’t do everything at once, something’s going to fall through – but I can, and do, keep trying to do things that help me be a better person and live a better life.

Life is about decisions and making the best possible ones.  I do try consistently to decide on things that will make my life better in the long term, not easier at the moment.  

Sometimes that does mean making ‘easier in the moment’ decisions, but overall, I like to think that my decisions, large and small, are leading me in the direction of a better and happier life.

Thriving

Priorities change and adjust – and to me, flexibility is one of the most important things when living with a disability.

It’s so easy for your desires and needs to change, and often your priorities need to change with them.

I do have ‘to do’ lists and priority lists, but those lists are usually for the week, not the day, and each morning, I wake up and evaluate which things I’m actually able to do, and reprioritize that list(that shower might be low priority one day, but it becomes higher priority the longer it’s delayed).

Whatever limits I am managing in the moment, it’s important that I recognize them and change my expectations accordingly – it’s not easy to do, but it feels pretty essential for being happy.

I am thriving now, not despite my disability, but because I have learned to befriend my condition and have integrated my FND into my identity.  

me balancing a white and gray cat on my arm
Rorschach says hi!

I am not defined by my condition, but it has shaped my life and impacted how I live. As I live in harmony with my FND, I can truly learn to thrive and live my best possible life!

I am, for the most part, happy with my life.  

I am now living in a space I can afford, with a person I love, and we are raising our kitties together.  

I have found a bit of a balance between having Big Life Goals, taking good care of myself, spending time with family, and connecting with friends.  

I find ways to create little adventures on a budget, and I am now able to reach out to those I care about and feel confident that I can help them and not lose myself in the process.

I have found balance

Tomorrow may be better and I am working to improve those odds – but not to make myself happy, because I have that – but simply so that I can stay happy, and keep being happy in the flow of my life.  

I hope that you too can find your balance, and learn(or remember) to be happy in the moment, even if you aren’t quite where you thought you’d be!


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10 Comments

  1. Thanks for joining us once again Alison, and for sharing some great tips on how to reframe our thoughts first thing in the morning especially (a tip I’ll be keeping in mind!). I am glad you survived those years, and are here now to share how you coped. Thank you for sharing x

    1. Sheryl, thanks so much for reading! Reframing thoughts is so important and does take effort – I’m all about developing positive mental and physical habits so that my reflex is a healthy form of self-care rather than something unhelpful or neutral.
      I’m so glad that you have these writing prompts, I’ve really been enjoying them!

  2. Hi Alison,

    I’m here visiting through A Chronic Voice’s monthly linkup party. I wanted to say that I really enjoyed your entry this month. I loved the cohesiveness of your whole story and how you merged all the writing prompts together, but most importantly, the vulnerability that you shared with us is so touching. I especially liked your point about focusing on the act of pausing. You’re so right. Creating some distance does allow us to see things with a little more clarity. I wish you all the best and I will be back to read more of your blog sometime soon.

    1. Carrie,
      Thank you so much! I am doing much better now than I was then, and it’s likely the distance of time that lets me be comfortable sharing it! It was a really difficult time, and I hope it will help others who have felt similarly know that there is hope and things can improve! That pause is such a vital part of life, and it’s only when you can step back a little that you can truly see your whole situation. Thanks for coming by!

  3. Hello again Alison

    Congrats on another brilliant post, it was a beautifully written and reflective on what life is like living with a chronic illness that I am sure will resonate with many.

    I really loved your insights on the need to pause and become self-aware on how we feel. It is something that I have found to be useful, just to take a minute to scan my body and then come up with ways on the best ways that I can make myself feel better and to relieve the burden the symptoms are having on me and my life.

    Great work again.

    Take care

    Rhiann x

    1. Rhiann,
      thank you so much for your kind words!

      I have been studying and practicing mindfulness lately, and that’s really helped me bring some of that into focus on a new level. Self-awareness is always important, but I think it’s essential for members of our community because our ‘normal’ is much more variable than average – both in that we often have fewer spoons than average on a daily basis, and that many of us have good and bad days which can be pretty extreme. Being okay with where you are now is the best way to be happy on a regular basis. It’s not easy, but it’s worth working on!

      Alison

  4. Wow to find balance after all that is truly a testament to your resilience. I am so sorry for all the losses you’ve endured. I’m so happy for you and the life you’ve built…. especially the kitties lol <3

    1. Yes, Cats can help so much with finding pleasure in day-to-day life, and they are great at reminding you of the value of naps!

      I think everybody has that potential for resiliant living, but recognizing it in the moment is very hard! I certaintly wasn’t feeling resilient in the throes of depression, but that doesn’t mean that I wasn’t.

      I really appreciate your empathy, and hope that you find, and continue to find, your own path to happiness and your own resilience!

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