Mangos and grief and looking for normal

I just sliced a mango, so juicy that as I held the fruit steady, its juice ran from my cutting board. So ripe, I put the knife down and pulled chunks of the fruit apart, tossing them into a ceramic bowl. When I finished, I grabbed a mango chunk from the bowl, popped it into my mouth – refreshing and sweet. I washed and dried my hands, then poured the mango from the bowl into a plastic zip top bag and threw it into my freezer.

I eat a lot of mango lately.

Mango. Papaya. Avocado.

I’ve never been a smoothie person and now I make smoothies all the time because vitamins. I need vitamins. Nutrients. Goodness.

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Mangos are rich in vitamin A. Avocado contains lutein. Also, supposedly it helps turn the carotenoids of the mango into active Vitamin A.

I don’t know if it really helps anything, but at this point, I also figure… what could it hurt?

I was recently diagnosed with a degenerative retina disease. I was probably born with it – it’s a hereditary disease that no one in my family seems to have. We’ve traced back – we can’t think of anyone else who has it, but to be honest, i don’t really know how far back we went. It’s autosomal recessive which is a fancy way of saying, I received one copy of a mutated gene from my dad, and one from my mom – they were both carriers so they each had a good gene and a bad one… and I got the messed up ones (yay me). It means that there’s probably been generations of carriers of this gene, but they just didn’t have the dumb luck of genetics.

Retinitis pigmentosa.

I had never heard of it before this year.

The diagnosis has hit me a bit like a ton of bricks and on some days I feel totally normal and I don’t think of my eyes at all and on some days, I find myself sitting on the floor of my mudroom crying because I don’t know what the future holds, and all I can see is a future of worst case scenario.

The reality is my night vision and peripheral vision will progressively worsen.

To what extent, no one can say for sure. But I know what the worst case scenario is and in my scared moments, in my vulnerable moments that is the place where my mind goes. To the worst place.

I shut my eyes sometimes and I imagine a world where the scenery is gone and if I let myself stay in that place my heart will break in half and it takes awhile to unthink those things and so I try sometimes to just pretend that everything is okay.

I am trying very hard to be hopeful and I am told and I have read that there are tremendous advances being made in medical research. I am told that there will be treatments in my lifetime; I’ve even been told that there could be cures in ten years.

And so.

That’s what I need to remember.

And that’s what I need people to remind me: to have hope when I don’t feel hope, and to believe that everything will work out the way it’s supposed to be.

I know that they say that things happen for a reason, and I’m not necessarily inclined to believe in that cliche – because for me, the reason is just dumb luck. Genetics. Nothing that anyone could do anything about.

And all I can do is wait.

Look for my new normal.

Feel sad when I feel sad. Feel angry when I feel angry. Ignore it all and bury it deep when it’s too much to deal with.

And in those moments when I feel empowered, in those moments where I tell myself that this will not defeat me, this will not define me, and I am stronger than all of this and I will get through this. I will make a difference.

I wish there were more empowered moments and less grieving moments.

I eat a lot of mangos lately. More avocados than ever in my life.

 

 

To tell Congress to support vision research, click here. There is so much amazing research being done; research that can maybe help me someday. It needs funding. Contacting your state’s folks really couldn’t be easier, click through – I guarantee it will take less than two minutes. If you’re able, consider a donation to the Foundation Fighting Blindness to support research and programs to fight blindness.

 

About sarah

Sarah is a book nerd, a music lover, an endorphin junkie, a coffee addict. Oh, and a goof ball. She writes, she tweets, and she sings off key.

Comments

  1. Jonathan says:

    I had been quietly reading your posts, and wondering for ages, but didn’t want to ask, or say anything. Thankyou for writing this.

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