Update for updates sake, so you’re not offended by my silence 

Since my last post many of you have reached out to me with you empathy, friendship and solidarity. I am so grateful. I am also lost for words. I don’t know how to explain what is happening, the seriousness or lack of seriousness, so I have stayed silent. I don’t know how to say thank you for having my back, so I say nothing at all. I have pushed myself to the silent corners of my mind, made myself invisible the way others often have and have become unsure what to say. So I apologize. I am sorry I have no words, but know that I do just have gratitude for your endless kindness. 

So I figure if there were ever a time for clarity and updates it is now. After 4 weeks of waiting with my local neurosurgeon to address my MRI, I have grown frustrated. It has been since June that my fear of a CSF leak has been dismissed as routine allergies. I also had my scans sent to the doctor in Arizona who is, by all accounts, the most recognized expert in this field. I have waited patiently for a response but was beginning to get a bit anxious, so yesterday I called. As it turns out they never received my scans so those will be sent by the facility here in Colorado on Monday. I was also able to leave a message for a doctor in the practice there.

I didn’t anticipate hearing back until they’d seen my scans. They called me back last night.

You should know that EVERYTIME I see a Phoenix area code on my phone my heart sinks just a bit. You see, being right about my diagnosis is not what I want. I just want to be heard and acknowledged. I want to be honored. Anyhoo… A doctor I am familiar with called me, spent time asking thoughtful questions and suggested the next step would be a clinic visit with the dignified expert himself. He took me seriously. He listened thoughtfully. He made no promises or predictions, just evaluated what I was saying and gave me an actionable next step.

It felt good to be heard. 

Then the fear sank in. What if I am right?! What if I am leaking?! What if I need more surgery?! School starts Monday, I am working no less than 4 jobs and I don’t get time off. They told me to rebuild my life and live and I did and I am so scared of letting everyone down. So scared of losing what I have scaffolded around me.

More than that I am scared to disappear again. I am scared to fade into the background of interpersonal conflicts that long ago stopped being about me and began being about pride, hurt feelings, and ego. I am scared to disappear behind medical tests and doctors notes, evaluations and stiff medical jargon. I am scared that the peace and contentment I have worked hard to instill in my present will fade away as my desire to be seen, heard, and acknowledged just as I am exponentially grows.

The other day I dyed my hair black and blue, like a superhero. Perhaps it was a childish angsty act of a woman endeavoring to be seen. Maybe not, it didn’t feel like much at the time, but maybe seeing this cartoonish version of myself will make me know that the only one who can save me and make me present and see me, is me. Maybe my outward body will give me strength. 

For now the fear seems to be winning so I am working on showing myself compassion. I was finally listened to and that is a small victory and I cannot let that fade away in the fear that I will fail at all the tasks that lay ahead as the semester gets set to begin. It’s just that it feels a little hard to breathe. 

Peace and love,

Samira

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2 thoughts on “Update for updates sake, so you’re not offended by my silence 

  1. Um, wow. I obvi missed your other post so I don’t know what’s going on. But, know that I am here if you need anything and I fully understand….I heart you even tho I don’t know you! 🙂 LOL

  2. Samira my heart goes out to you & your insights are amazing. I totally understand your frustrations as a patient, even though I have not personally experienced it. Navigating the medical system is not an easy task. You certainly are able to put it into words & I am glad you continue to advocate for yourself. A friend of mine with several chronic illnesses has also been impressed as well. Love, Jean(Sophie’s mom)

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