Curling up in Little Balls to Embrace, not Run

When I first started working on my trauma over 20 years ago, I would get horrible flashbacks and curl into tiny balls. My therapist always remarked back then that I could make myself impossibly tiny.

It’s quite strange that I turn into little balls these days as a way to grow stronger physically. I am now addicted to inyegar yoga, which is in simplicity, a yoga that uses props and adaptation so even people with chronic pain and mobility issues can become accomplished yogis.

I’ve dabbled in yoga at various gyms over the years. It seemed more torturous than anything, so I never stuck to it for long and also didn’t understand that listening to my body was key. It made me feel calm, but I never understood what was the true attraction.

As my physical abilities diminished, I started to study more of the foundations of yoga, which for me were about meditation and calming the body. From there, I pushed into some basic daily stretching to help manage my neuropathy and musculoskeletal pain.

A couple weeks ago, I ended up in an inyegar class as I was ready to venture out and was feeling stronger. I instantly fell in love. No one minded that I showed up with a mobility device or got a look of concern that I would hurt myself. I got a warm welcome, some basic health history questions, and the feeling of belonging.

So today I was curled up in a little ball that felt so good on my body. Instead of cowering from fear, I was reflecting on how strong I am. I love yoga for me as it perfectly represents the strength I still have physically that I use to carry myself through other aspects of my life.

I don’t say you have to try yoga, but the past couple weeks as I have truly put together the mind, body, and spirit aspects of it. I appreciate in a whole new way what it’s about. It’s not a physical exercise. It’s a total spirit renewal and push to be better.

What is something you can do to gently push yourself? Change comes from getting out of your comfort zone. Strangely, this tiny ball was all about comfort!

Love

Lizzie

Another Mother’s Day is all Wrapped Up

So many Mother’s Day have meant huge sorrow for me. I was always mad at myself for having a mom who hated me and taught me to hate myself even more.

When you stay lost in hating yourself, you forget to see what is around you that is positive. I’ve been working hard at smashing the expectations of being a failure, stupid, an attention seeker, worthless, unlovable…behind. It’s not just her I learned those things from, it’s other family members too.

I’ve been pretty sick for over 3 years physically. I was diagnosed with transverse myelitis in 2016. This past year I was diagnosed with chronic Epstein Barr virus, celiac disease, chronic inflammation, oxidative stress, had surgery on my back as my degenerative disc disease has been so bad. Tomorrow I go to the doctor to address whatever the masses are throughout my lungs and lymph nodes.

Today was Mother’s Day. I have a son who is 12. The worst part about being physically ill is rarely seeing him and not being able to do anything with him. I promised him a picnic and outside time for the day. Unlike my own mom, I was going to put his needs first.

Waking up this morning, I was tired, my throat hurt, and I was still in pain from yoga 3 days ago. I stayed in bed until noon and decided today was one of those days I had to.

My son and I got to our picnic spot, enjoyed lunch by a creek with our dogs, and then my little guy wanted to move.

I took the beliefs put on me by my mom about being a failure and weak and unlovable and started to move. My son was so happy that he took the video here. You can hear him cheering me on. I didn’t fail today. I was strong and loved. I WAS the mom I always wanted.

Are you feeling bad things about yourself? Chances are someone planted those ideas in your head. Take it from a failure that no one would ever love!

Love

Lizzie

Don’t Hate Me for Saying Yoga (not actually about yoga!)

No worries in that this post isn’t an endorsement of yoga, but about pushing yourself to adapt.

I spent nearly half of March and April in the hospital. My list of physical health diagnoses is dizzying and has felt entirely hopeless. The last time I left the hospital, I left knowing I will be using mobility aids and some even more renewed hopelessness!

Hopeless is not who I am!

I recognize there isn’t a miracle cure, which had me stopped. There’s no cure for PTSD either, but I’m managing that pretty well these days.

With this knowledge, I decided the best way to jump back into life was exercise. I signed up at my local community center for 3 months of lap swimming. After 4 days, I ended up with hives all over my face, a swollen tongue, and tingling lips. Bummer, it was a good run.

I’m back into the “why me” mindset. Another light bulb went off, and armed with my new epipen, I went to a dance class that was designed to be for pure fun! The able bodied dance community shot me some pretty nasty stares as I was having fun, but I left feeling embarrassed and then foolish (although I picked up the choreography even with forearm crutches better than most)!

I’m back in my house again feeling that sinking feeling of why do I even bother trying.

I ended up coming across an inyegar yoga class locally. This yoga is designed to be all about alignment and useful for chronic pain. Even though I was feeling defeated, I went anyway. I felt great! The teacher had me doing things with my body I couldn’t have done when I was a super yogi with a perfectly functioning body. I signed up for a series.

The key was adaptation. I won’t be cured of any of my physical health problems. It’s not the nature of what I have. What I do have is the validation of several diagnoses with a couple incredible doctors who seem to fight for me in moments when I give up, and the hope that I will live a decent life based on adapting.

If I focus on what I can’t do, I miss out on the opportunity to experience what I can do.

I’m still grieving a lot and living in a world of people (friends and family) who have kind of forgotten I’ve existed and don’t make an attempt to understand is hard, but I am adapting to that too. With careful monitoring of my energy input and output, I’m going to get going in ways that are different.

Now to tackle a mountain of medical bills that I refuse to adapt to!!

Love

Lizzie

Friendship is Texting. Friendship is Facebook.

As someone who is 43, the new reality of friendship has been extremely hard for me to accept. I thrive on actual phone conversation and meeting in person. This isn’t reality for most people.

I was spewing an agenda of connection and being together. I was getting angry that no one was offering to come see me or help me as my life is becoming laughable at how difficult it is with my multiple rare diagnoses that keep stacking up. I couldn’t understand how friends didn’t want to be social when being social can feel so good–to me.

It seems like everyone I know is suffering from social anxiety somewhere on the spectrum. Just because I want to see people in person doesn’t mean anyone else wants to. I have my theory on why such a rise on social anxiety, but I don’t have anything to back them, so I’ll leave that until I get some research off google, haha!

I get a ton of support with people texting me and on Facebook. Friends say the most incredible things to me. They say things through these formats that are amazing. I wasn’t giving merit to it. I wanted to see people…

Friendship has changed. Whether we are actually too busy to connect in person or not, we all perceive to be. Friends taking the time to send me well thought texts or incredible comments on Facebook is friendship today. I might not like it, but I have to appreciate it.

I will have to love that an incredible amount of people are very loving and supportive via electronic formats. I have to acknowledge that friendship means something different today than it did when I was learning about what it meant to be a friend.

In those moments i get to see people in person, I have to love and appreciate it for the gift it is. I understand that friendship has changed. I hope others will also honor, occasionally, that an in person contact is what I need too.

Virtual hugs will never feel as good as a real one. I will argue that without scientific research a million times over.

To my texting friends and friends who show support me through Facebook, keep it up! I love you and take it as it is.

To people who read and support my blog, you are also a gift.

Love

Lizzie

It’s ok Not to be ok

The theme of, it being ok not to be ok, keeps showing up in my life these past few days. I realize this and know huge tears of sadness and despair are often followed by moments of calm or new appreciation for something once missed.

I have had the absolute honor of meeting some extremely strong women lately. They are absolutely solid, yet huge difficulties are arising in their lives. The ones that have given me the honor of honesty will look at me and say, “Lizzie, who do I go to when I need to express that I’m about to fall apart?” I always reply, “you come to me”.

It’s not like I’m so strong that I can lift up people constantly. It gives me space to not feel like I’m whining when I fall from a broken, loaner wheelchair and can’t move for days and am engaging in “why me???” Other people crying makes gives me validation that I’m not crazy.

The worst thing you can ever tell someone who is looked to as strong is, “you’re strong”. I want to know someone can hold space for me if I need to sob about the unfairness of situations while celebrating that I always can get back to gratitude and knowing it will be ok and will probably fall back to despair again. I and these couple other women who have touched me these past couple days just need to feel.

I know that things can feel especially intense when you have serious trauma. “Holding space” as I’ve heard it called is so important for each other. It’s not depression. It’s normal human emotion.

I love connection and why I chose to stop looking at Facebook today to try to look for something more real. Remember that I’m not depressed. I’m just having a hard time. (Which happens to be totally normal given the circumstances!!)

Not Going to Happy Birthday It

I know even the most average of people with loving pasts get anxiety about their birthday. We want it to be this incredible celebration and really happy day, to find disappointment. Maybe people you wanted to remember didn’t or someone you really love got you a gift leaving you saying, “what??” as it feels like a betrayal that they didn’t know you well enough.

Tomorrow I turn 43. I’m dreading it. I’m still in the hospital and feel people will remember because Facebook will tell them. I have spent so many holidays and birthdays alone, especially this past year as being sick has excluded me in my ability to be festive. How do you celebrate when you are just trying to figure out how to make your body work enough to get a glass of water?

Anyway, the typical birthday dread has been setting in for over a week. It gives me nausea. My mom would throw her worst of the worst at me to remind me that I was useless, stupid, evil, unloveable, etc. I’m not going into the details of what she did, but I want people to know if you have sexual trauma from your mom, you aren’t alone. You can email or comment if you want support or need more. It’s a horrible thing to overcome feeling like if your own mother hated you so much, how could anyone have love for you. SHE was wrong, not you. My lack of connection and attachment to my mom messes with my self concept multiple times a day. I just have to build myself up and recognize that there are some people who think I’m pretty amazing. But missing having a mom is something I will grieve everyday of my life.

Anyway, that was an aside, but felt it was important as I wish someone would have told me that experience in my early trauma treatment.

So back to birthdays. My family would throw me a beautiful birthday party with presents and cake. I remember early on thinking what a sham this party was an elaborate presentation orchestrated by my mom to show I was “loved”.

So probably makes sense why my birthday is a disaster. Instead of feeling unloved and like I have to put on a happy face tomorrow, I’m going to celebrate that today is the last day of my life that I’m 42! I think that is where the rite of passage lies. I’m going to feel good today and appreciate that I’m alive, making it pretty well, all things considering, and love what makes me unique.

Tomorrow I’m going to sit with grief. I’m going to be sad without any judgment. I’m going to feel and feel and feel. It’s still going to suck, but it’s going to be authentic. I hate my birthday. It makes me sad. It really makes me angry. I’m going to feel that. If I’m lucky to have some good conversation with friends who celebrate me tomorrow, I will accept the welcome break from grieving.

You don’t have to do what I do, but if you want to celebrate on your birthday, make sure you tell people. It’s pretty low in statistical probability that you will get a surprise party. If you also want to honor yourself, do that. I might next year!

Nonetheless, happy last day of 42 to me!!

And a huge happy birthday to you no matter what day it falls on. I think you’re pretty great!

Love

Lizzie

Truth is, I’m scattered

Sometimes things feel like failure, but may end up as new beginnings.

I’ve been back in the hospital for a little over a week now. It’s been crazy. I finally got total and complete validation for a neuro immune disease I was diagnosed with almost exactly 3 years ago called transverse myelitis.

I think the neurological community thinks it’s something you get over after a few months once you learn to walk again and the paralysis wears off. I did get past paralysis, and I did walk again. I went back to dance. I worked at a job again where I brought meaning to people’s lives. I started over.

Unfortunately, I was falling apart by falling frequently, breaking some bones along the way with those falls, having my legs go numb, and plenty of weird trembling that my coworkers would laugh that I was shivering in the Texas heat of summer. I’d go to work all day with these symptoms and unable to eat as food would make me really sick, so I got my rest in the emergency room overnight just in time to go back to what I thought was home to shower and work again in the morning.

Looking back, it was pretty incredible I sustained it so long. The primary care then treated me with antibiotics as he was sure I had a bacteria in my gut. After not getting better, he joined the bandwagon of “she’s just a crazy hypochondriac”. I was definitely crazy. I was living in some unbearable circumstances that would have made the most sane crazy. I was sick and I had gone home to my family. That’s what you do, right? Family. A word or feeling I’d been chasing for a lifetime.

A year later, I was diagnosed with celiac disease and nearly two years later, I have received validation for lots of crazy symptoms as being a result of my transverse myelitis, spine issues, and a bit of the discomfort of being treated so poorly by much of the medical community for 20 years.

My angel doctor, as I now refer to her, has pushed me harder physically and even harder emotionally. I’m doing wheelchair shopping, but what I’ve really had is incredibly painful growth. She told me last night to sit with my sadness and very much like meditation, I wasn’t supposed to analyze, I was just supposed to feel. I was also able to sit with a label I’ve been fiercely saying isn’t true, “crazy”.

So I sat, and it hurt. There are honestly no words for sitting with sadness. I recommend anyone sit with it. Do a sadness meditation. If you are having trouble feeling your feelings, sit with it. You could also have a joy meditation or anger meditation or any emotion you avoid, or explain away with fancy words as I do.

I thought I had feelings. I thought I had overcome, but what I had reached was complacency and numbness. I needed to be pushed outside of everything comfortable to me.

Maybe you would wonder why feeling so incredibly uncomfortable would be positive? I still feel like I’m in a state of constant feeling. It’s raw and not natural and I’m hating it and loving it all at the same time. I hate it as numb feels simple, but numbness gets you nothing. Numbness makes me feel so sick that I stop seeking out my joy. I haven’t been reading. I haven’t been painting. I have been dealing with the overwhelming symptoms of a disease no one could recognize was not only taking my life, it had captured my spirit that it locked in the box of my room.

My sadness has come from realizing that a lifetime of self limiting beliefs snuck up on me and shoved me down a hole. You can’t do anything in a hole. You can’t experience when you are surrounded by dirt that starts to cave in just enough to give you the fear that every goal you ever had to live a life that wasn’t about trauma had all come back to you.

As for sitting with the label of “crazy”, I didn’t do it exactly right. I actually thought about that one. I realized that it’s absolutely true. I don’t watch tv, don’t care for movies, you wouldn’t catch me getting take out. What you will see me doing is being a crazy health food nut. You will see that I’m reading 8 books at once. You will see 4 different canvases with started paintings in my living room, you will see nothing matches in my house, yet blends in the best harmony, if you know me personally, I will send the longest rambling texts ever (sorry friends). And most of the crazy you won’t see is how deep I feel. You won’t see the 7,000 ideas I have for creative projects. You won’t see my desire for a piano and a violin as I just want to create that too from a past that may remember. You won’t see the buzz that is constantly going in my head. You won’t see the metaphors that go on and on once it gets in me. Sometimes I feel tortured by thoughts and ideas and creative bursts. You won’t see the physical pain of not getting things out. You may see my disappointment of when I discover cool ideas and you give me that look like you’re crazy. (My current obsession has to do with the social networking of trees and how the forest has a language that I know as I’ve heard it).

So my title had to do with being scattered. I’m so scattered I feel a pressure to talk to nurses that clearly have more to do than me exclaim about trees.

So scattered, but it’s not entirely my fault. Im on some crazy neurological meds that may work out or just may enhance the crazy.

Anyway, I’m just going to embrace that I’m crazy and I don’t do things the way others might. I’m tortured by constant thoughts, but also love that I always have new ideas.

Is anyone else scattered or crazy or feeling something so deeply that you don’t know if you should run from it or run deeper into it? I’m feeling alone in this.

Tomorrow I go home to face a new life of using mobility aids while I leave my angel doctor behind to do what she does. I’m hoping she pushes people regularly like I have been pushed. I hope someday she will understand my huge gratitude for her and the hours she’s spent with me pushing me to grow.

Really I’m going home to grow.

Love an extremely scattered,

Lizzie