Give and take

I’ve come to a few realizations throughout the pandemic, as we all have. I had been living in isolation for years prior. Nothing had really changed – except me. I had changed, there was a shift, and I was beginning to see progress. We were guarded but hopeful – seeing changes that had never taken place before. Improvements that didn’t seem possible.

My days changed what seemed like overnight, a typical day for me was singing non sensical songs from my living room hospital bed to my husband. Him buying me makeup to cheer me up that I was too tired to use. Smiling through the pain so that my husband wouldn’t worry so much. Dreaming of when things would change.

My most exciting moment in a day was which injection will hurt less. A really wild day was being able to get in the bathtub. You get the picture, so when we saw I was making major progress – we wanted to actually enjoy it.

Not so fast, hello covid. Worldwide pandemic, really?

I didn’t feel my complaints were valid, with all that was going on in the world – I wasn’t going to whine that I couldn’t use my new found freedom to walk in the mall. People were losing family members, so I didn’t feel right complaining that mine wouldn’t be able to see me walk for the first time in years. Everyone was feeling loneliness, so who was I to be upset about my friends not seeing this new version of me? The friends who stuck by my side even when I couldn’t open my eyes long enough to say hello. The friends who never knew if I’d suddenly start painfully thrashing in my bed, on full display. The ones who would see a shell of my former self one moment, and a rare glimpse of my fabulous the next. I wanted them to see my bright eyes, full of vitality, I wanted everyone to see this Miranda 2.0

I wanted people to be around me without feeling fear of when my attacks would come crashing into our visit. I wanted my loved ones to be at ease in my presence, not constantly on guard – in fear of me.

Even though I wanted to be celebrated and seen, I’d have to be okay with experiencing it myself for now. Just me and my husband, getting to know the new me, the new ‘we’. The new found freedom would be used to bake my husband’s favourite cookies, my bright eyes looking at him full of vitality. Him looking back at me with such awe and admiration. I used my new legs to take peaceful walks, what a feeling. I found such gratitude in every moment that I could see, speak, and move on my own.

During this time, I didn’t just heal physically – I was forced to take a look deep inside. I didn’t know I was healing, I was still so cautiously optimistic. I began reading again, something I hadn’t been able to do for years. I started to read for enjoyment, and then switched to personal development. I listened to podcasts, I learned everything I could about fight or flight and how it impacts the body long term. I wanted to know myself, why I am the way I am.

I craved control and just wanted to fix myself. I tried to ‘fix’ myself everyday. I needed healing, not fixing.

I eliminated foods I wasn’t willing to eliminate before, changed my lifestyle, I meditated every day. This was the first time in my life with cancer that I had a break from treatment. I wanted to eliminate the fear of uncertainty, I craved that breath of relief. I didn’t know what I was searching for, but all along it was a feeling of ease. I didn’t know that was possible for me, after all, this cancer is incurable.

Every day, as I began healing physically – walked an extra few steps, swam further in the pool, stopped relying on my wheelchair, took the seat off the toilet, as my legs became stronger, my mind became clearer…

But my emotional health was getting rocky, my emotions were up and down. I was feeling triggered often, I knew I needed help with my trauma response.

I knew my past journey would eventually take a toll, not many people get so close to death and live to tell the tale. It’s not all sunshine, rainbows, and gratitude.

It’s moments of paralyzing post traumatic stress, it’s wondering ‘why me’, it’s guilt, and it’s anger. PTSD comes in all forms, rushing back at any given moment, and it’s not always a vivid flash back. It can be a smell which leads to an irritation without knowing why. It can be sweating which reminds me of the feeling of my hot skin not being able to leave my bed, which leads to a sadness, or just numb. The ‘why me’ phase is accompanied by the sadness and grief for all those who didn’t have the same turn around as you. The guilt is being the one who did. Anger is why the F did it ever get this bad? Anger for being misdiagnosed so many damn times, not once, not twice, not 3 times, countless times.

Why did I have to suffer so badly to find reprieve? Why was I not seen SO many times? Why was I not heard? How can I prevent this from happening again and again? I did everything right. There must be something more. WHY!?

Acceptance, healing.

I share to heal, I share to help others navigate their own pain, I share to live out my purpose. I share to surrender all of these feelings to a higher power. I can’t carry them with me, no one should. I smile because I am here, to give you a glimpse into my highs and lows. As I called it, the good, the bad, and the fab.

When I began writing this, it was to speak about my realization. As I’ve been doing a bit more, safe visits, walks, social stimulation – I’m unable to handle as much as I thought. With all of that private inner healing, all of my physical accolades I saw, I craved the day where I could show it off.

I was hit with a swift reminder that I am still very limited. I have limitations I didn’t even know of, and thanks to all of my learning, I now know why. Things I used to just push through and think were my ‘normal’, I now know the importance of listening to and respecting. I now know how to honour my body. I know the mechanics behind the overstimulation, the symptoms I experience with sounds, my triggers, and how to respond.

So as much as I felt frustrated, my ego loudly saying “we worked this hard only to have the same outcome?!” I had to ground myself and remind how far I’ve come. Which is what led me to the blog I first shared at the beginning of this post. If you missed it, you can read it here.

I’m not running a marathon anytime soon but I made it to the water without the help of my wheelchair today and I haven’t done anything ‘crazy’ like that in a long time! 

I made it to the water

The reason why I wanted to share this is because we’re far too hard on ourselves and we don’t celebrate the small stuff. I’ve come such a long way and I don’t ever recognize some major milestones even though they may seem like small ones. It’s about time we realize things like this may not come around again. So celebrate EVERYTHING!

Although I shared this a couple of years ago, my words resonate with me more than ever today. So rather than focus on what didn’t happen, or the things I couldn’t do, or can’t do, I’m going to re-focus on the things I can. I’m going to focus on the fact that I GET to do all of these things, it’s give and take.

Leaving my safe space means I will have to be over-prepared, and yes I will feel it afterward. My body will go in a flare if I eat something it doesn’t like, I can flare when there’s too much excitement, too many voices, or just a smell that I can’t tolerate. I will be in pain when doing anything out of my norm.

Before, all of the same things would have happened… but I’d have no idea WHY or what to do in response. Now I’m aware, and able.

I’m so proud of how far I’ve come. I didn’t have to do any of the work I’ve done to help myself, but I chose to. Just as I choose to wake up every day and feel so happy. Just as I choose to to be my own best advocate. I choose to thrive. I am grateful, for knowing my limits and for those around me who care enough to get to know them as well.

When I look back and read some of my previous blog posts, like this one – I can’t help but smile. As I write this with warm happy tears on my cheek, I’m smiling. I smile as I remember all of the trauma I’ve endured, but chose to be happy anyway. I smile when I remember how badly I wanted others to feel less alone when I myself felt so lonely. I smile because I wrote my blog to share my story as a comfort for those who are experiencing similar circumstances, yet here I am being reminded of how far I’ve come

On Jan 3rd, 2019 I wrote “I have a long road ahead of me, but as long as I keep smiling, I’m sure my fabulous can get through anything

My words act as a reminder to me today, and more than ever – I am hoping the same for you

Pheo VS Fabulous

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