I’m Struggling: Diseases Suck.

In December, a dear friend of mine (a piece of my heart) passed away. She was suffering. She had been in and out of doctors for two years and they had yet to be able to diagnose the autoimmune disease/diseases she was suffering from. And she suffered. Oh, did she suffer. But I didn’t realize the extent of her pain until she unexpectedly passed away. She hid that pain from me, from others, and put on a brave face, went dark and quiet so as not to “burden” those that love her.

But I wanted to be burdened. And I couldn’t understand why she would choose to suffer alone. I thought: This is what friendship is for – for me to help carry the burden and try to ease her pain, at least let her know that she isn’t alone.

But I understand now.

Friends, I’m suffering. And I’ve gone dark and quiet because in some way I am embarrassed by my inability to get well and so I only want to emerge when I am brilliant and bright, but what if that doesn’t happen? What if I need to adjust my way of life so that I am slower, less “brilliant”, but limited?

I broke my laptop. I broke my phone. On Christmas Day a bowl of spinach flew from my hands and my husband had a panic attack; this isn’t like me, to be clumsy – I’m sharp as a motherfucking tack. But it wasn’t until I broke a bottle of olive oil and sliced my two fingers and got eleven stitches between the two of them that I sought medical help (I was forced to – an open wound will do that).

Honesty: I’ve been clumsy, I’ve been dizzy, I’ve been nauseous, I flew to Chicago to attend my dear friend’s celebration of life and the motion sickness never left me, my eyes vibrating vigorously at all times. My primary care doctor ordered up a brain scan to rule out a tumor, a full blood panel to check for an autoimmune disease, she referred me to an ENT.

Blood is clear. Phew. Brain is clear. Phew. ENT sent me to an audiologist who performed an ECOG test, which showed that I have excess fluid in my left inner ear that is pushing on my balance organ causing the dizziness and nausea; she believes I have Meniere’s Disease.

Now, I’m lucky. I don’t have cancer. I’m lucky. I don’t have a neurological disorder. I’m lucky. I have excellent health insurance that has allowed me to find an answer. And to hear a diagnosis, I wept.

But Meniere’s Disease is chronic. Life-long. And you can only treat the symptoms.

Let that sink in.

They’ve got me on a low sodium diet (less than 1000 mg per day) and a water pill, and the dip in sodium and the dehydration landed me in the ER on Friday. The dizziness is worse, spinning, always spinning, and I scoot down the stairs of my house on my butt.

My husband is out of town for the week and I’m fearful of being alone in my own home, fearful I will fall, or my sodium will dip again and I won’t have the energy to call someone for help because that is what it felt like – extreme exhaustion in which pulling my hair into a ponytail had me collapsing on the floor.

I’m feeling overwhelmed by the possibilities of this disease (though I’m getting a second opinion – I won’t accept it), the possibility that I will always be dizzy (the meds for vertigo aren’t working on me), that I won’t be able to have a child because I’ll drop it, that I will eventually go deaf in my ear, that they say my right ear could possibly be infected and then I could go completely deaf, that I’ll never hear the piano again, that I won’t be able to sing any longer – that pieces of me that make me, me, will be gone.

But deaf is better than dead.

On Sunday, I lie down on the sofa spinning, feeling helpless and hopeless, but my husband played the guitar and I watched as he played for me the song we walked down the aisle to and I felt this overwhelming sense of love – this, here, is my husband, and even though I am unable to move, I can still see him and I can still hear him and I can still love him. I marked that moment in my memory – his voice, the strum of guitar – sounds amplified in my swollen ears; even broken, I am still loved.

If this turns out to be my life from here on out – at least I still have life. And I will need help with self-compassion. I will need to learn how to ask for help. But life doesn’t have to be fast. I don’t have to be sharp as a motherfucking tack. I’m not brilliant at all times; I’m not always bright. Right now, I’m a mess. So here I am, asking all of you, my friends, for help. Send me love, send me light, send me prayers – I’m weak right now and I need them.

Everybody struggles. Everybody suffers. This is my struggle and I’m suffering.

(But don’t worry. If I have this disease – I will garner my strength, your strength, and kick this disease’s ass. Just watch me.)

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10 thoughts on “I’m Struggling: Diseases Suck.

  1. You are very brave. I think you a still as sharp as a motherfucking tack ;*

    You are one of the most beautiful people I know Emily, and I don’t know you that well, lol. You are stunning on the outside, and flawlessly sweet and kind.

    You will either get through this or start a new trend kicking it’s ass every single day.

    Head up, Buttercup…you got this!

    Like

  2. Wow Emily,
    First off, my prayers are with you. You will beat this disease. Secondly, you are a beautiful writer. I pale in comparison 🙂

    Sending you my best,
    Brian

    Like

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