Trauma: A deeply distressing or disturbing experience

Anyone who’s ever experience one with me always said that I’m good in an emergency. I’m the first to organize, make a plan and execute. No time is wasted on freak outs or fear. And I agree, I enjoy being on my own team any time the shit hits the fan. But I’ll tell you what. This kind of survival spirit, it comes at a cost. And that cost is delayed emotional processing.

You see, I find myself in the early months of year 2 of late stage Lyme disease treatment and I am just now starting to feel the full impact of what’s happened to me. Of what I’ve lost.

I think at all points up until now, I was just enduring. I was living through it. Between the hearing loss, the vestibular challenges, the panic disorder, the weeks without sleeping, the mysterious traveling pain, the hundreds of doctor’s appointments, the conflicting information, finally the diagnosis, figuring out treatment, selling my home, changing my diet, learning about “herxing” and trying to understand how to keep myself at all functional… there was never room to think about what was lost, about what it all meant to my heart, to my soul.

My therapist and I did an exercise recently where he had me describe an illogical thought by saying what it was (“I am not safe”) and naming where it came from. Without even thinking, I blurted “from direct mother fucking trauma”.

Lyme disease has been nothing short of that: direct mother fucking trauma.

I’m not even sure I can quantify it now. Not yet. The best I can describe so far, my life… even the very heart of who I am… was torn down to rafter through this. I mean, 2 years ago I was doing crossfit 5x a week, I was working 60 hour weeks, I was going out with friends every single weekend, I was vivacious and witty and fun. And then suddenly there I am… homebound, dependent, terrified and very very isolated. FOR A YEAR. At the beginning of this, I was practicing walking a few yards at a time with my hiking sticks. I was missing cognitive function enough that I would get lost in my own neighborhood, and I faked my way through most conversations. I was truly sub-human. I understood, for the first time, how someone would really truly just want to die. At times, I would have accepted it without challenge.

Coming back to life after nearly a year of that… it’s… an unexplainable surreal experience. When you’ve lived through week long periods where you simply struggled to keep your last breath in your chest, your whole span of reality shifts.

Last night, I went to an old friend’s birthday party. About 20 or so of us met up at a Mexican restaurant and sang karaoke. True to form, the evening was raucous, loud, quick paced and booze fueled. This used to be my everyday life. And while I abstained from any alcohol, and was the only one performing “soberoke”… for just a few hours I felt like my old self again. I laughed. I joked. I kept up with stories. I sang several songs. I danced. I hugged the people who’d only ever known me as that girl. I stayed up late… I didn’t think about Lyme disease. And it didn’t hit me until I got home, until the man next to me was asleep and I was alone with reflection… how incredibly HEARTBROKEN I am that that isn’t my life anymore.

The tears just streamed.

They still are.

I’ll never get to go back to that life. Functionally, I’ll probably never get to go back to multiple whiskies, or late night junk food, to yelling across bars, to staying till close, to being part of every fun adventure my friends have. No, to stay in remission (when I get there) will take a lot of healthy habits. And that alone is enough to grieve. But what gets me the most is that I’ll never get to feel that INVINCIBLE ever again.  I’ll never feel completely safe, okay and full of possibility.

What Lyme brought into my life is close up knowledge of the kinds of horrors that are potentially – at any moment – just minutes away. Horrors of your betraying body. Horrors of your unsound mind. Horrors of so many friendships lost. Horrors of great loves that leave you. Horrors of baby carrying dreams that’ll now never be. Horrors of standing abandoned by modern medicine. Horrors of going bankrupt for treatment. Horrors of being misunderstood, isolated and alone.

No. I will never feel safe or okay again. At least not in the naive way that I used to. And this is right. This is good. This is enlightenment. This is the TRUTH. But damn if it doesn’t feel heavy on my shoulders right now.

I know this is a sign of healing. The emergency is ending. And so the feelings hit.

I know someday I probably will be okay again. I’ll be happy. I’ll develop a sense of trust. I’ll rewrite myself, my soul, and my heart. And I have no doubt, I will find happiness in this new life, this new me. Whatever and whoever that ends up being.

I guess the first step is to feel the pain of the loss.

And feeling it I am.

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7 thoughts on “Trauma: A deeply distressing or disturbing experience

  1. I completely relate to this feeling. I spent a year homebound, reliant on my parents for care, and only when I was able to gain a bit of independence and start a new, modified life did the full force of what you lose to Lyme hit me.
    I will say that a great resource for navigating this feeling is to find like-experienced individuals (it’s so much more fun to go out to a restaurant and ask the server if the hummus plate is gluten free dairy free soy free if everyone else at the table is also asking questions and suspiciously eying the ‘corn’ chips). Even if it’s just finding internet friends who get it, it really, truly helps.

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  2. Karla,
    There is so much inspiration in you. So much strength in your ‘weaknesses’. As I sit here, overcome by emotions from your words I find myself unable to express. You, your story, your struggle, and your sharing are healing in the most spiritual ways.
    The travesty of life is living an experience with someone and knowing they didn’t have the same experience. I would give so much for you to feel what I feel. Think the thoughts I am blessed to think because of your words. And KNOW the way I KNOW why you have chosen to be so brave on this life path. You are a healer. Not just of yourself, but for countless others who don’t have the capacityor, capability courage to walk your path.
    The love I have for you in my heart is deeper then the oceans. The joy you are going to experience in your future WILL be so much greater then the lose of your past.
    R~

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  3. That was a heartbreaking read but so beautifully written! Man, that got the tears going! Ive been feeling similarly lately too & you verbalized exactly how I feel perfectly. I do appreciate the good times more now since there are fewer at times these days.

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  4. Hi Karla,

    I hope this comment comes through. I wasn’t sure how else to reach you. Tonight I was searching the internet, as I often do, to try to get one step closer to figuring out what’s wrong with me. I stumbled upon an MS article that had your photos and some quotes, along with photos from a handful of other people. I immediately saved the link, because it made me feel less alone.

    I’ve had issues with chronic pain, migraines, peripheral neuropathy, anxiety, stiffness, and on and on since I was 15 years old. I’m almost 27 now and I still don’t have many answers. A sudden and unexpected change in my life recently prompted me to quit my long-term job in retail and that has at least turned into a blessing. I was on my feet all day, constantly lifting and it felt like it was killing me. I’ve been staying with family now and out of work for a couple of months. I had hoped that I would instantly feel better, but it’s still getting worse. I can’t sit for long because it causes pain, stiffness, numbness, pins and needles and migraines. If I stand for more than a few minutes though my knees start to burn, my back starts to hurt and I have to sit. My calves feel like they are filled with lead and the pins and needles feeling is constant now. I’ve seen so many doctors and no one seems to even be interested in figuring it out. I can’t imagine where I’ll be a few months from now, let alone years from now.

    I don’t know what prompted me to share all of this, because I only ever share it with one or two other people. I guess I felt like I needed to try to connect. I want to say thank you for sharing your story. I’ve felt so desperate over the years, because I’ve had to miss out on so much. I’ve tried to put on a game face and in many ways I’ve succeeded. Only a few people know the extent of my physical limitations and what it has done to me emotionally over the years. I wish I remembered what it felt like to not be in pain or to not be terrified and filled with desperation. I was so independent and now I’m living with my parents again and trying to figure out how to make a living on my own again. I have to lay down with a heat mat practically once every hour at least, so I don’t know how I’ll ever work a job again. Here’s to hoping things get better for both of us.

    I’ll be following your blog now. You seem like a really awesome person and even though I don’t know you, I feel better knowing you’re out there. I know there are millions of people suffering too, but damn does it feel lonely sometimes.

    Much love,
    Ayden Oliver

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    • Ugh. Ayden. You break my heart. I sooooo know how you feel. I’m here to tell you healing is FOR SURE possible. I’m not all the way there yet, but I’m 90% most days! You just have to find the RIGHT cause of the problem and then a few different ways to tackle it. Have you been properly tested for Lyme? There’s a blog on here called “think you have Lyme?” That explains how to get a proper test. That might be a good first step? I also really recommend Bob Miller for help optimizing your genetics (search for a blog with “lightbulbs” in the title). And oh my gosh I am always here to lend a little help whenever I can. I’m glad you reached out. This takes a village. It really does.

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      • Thanks for replying! I haven’t ever been tested for Lyme, despite all of the many doctors I’ve seen over the years. I’m from the North East and I grew up basically in the woods, so I’m really surprised that it never came up. I just saw a new doctor (moved from San Francisco to Central California) so I didn’t want to push too much. I got a referral to an endocrinologist (I’m trans and on hormone replacement therapy), a cardiologist for possible heart issues, a pain specialist and a psychiatrist. Whew. She won’t continue a lot of my pain and anxiety meds, so I have to see specialists for all of that. She did order Lyme testing, but it isn’t the Western blot. I might just see what this shows and then come in with the Igenex paperwork and see if she’ll sign off on it. Money will factor in though, so I guess we’ll see!

        Thanks for all of your suggestions! With all that I’ve dealt with/am dealing with, Lyme does seem like a strong possibility. My grandfather had MS and I know some doctors have mentioned that there are cases where it skipped a generation. I’ve always been concerned because of that, paired with all of my symptoms, but doctors don’t seem to be.

        At least we have each other.

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