Home » Blessings: Here & Now » beneath an orange sky

beneath an orange sky

Rustic barn surrounded by a field of Cow ParsnipI am off to the NIH tomorrow!  A group of doctors studying virology, chronic-active EBV, and the genetic defects associated with prolonged infections, have accepted my case.  My dad will take me to my appointment on Monday at their facility outside of DC.  This could be the first time in nearly eighteen months of illness when I won’t be told we have not seen this before.  It’s a tremendous opportunity.  Truthfully, I’m feeling surprisingly numb to the whole situation.  Maybe I am avoiding the anxiety of imagining an actual cure.  Maybe I am protecting myself from the depression that might follow if this is another dead-end.  Still, I have moments where I am exploding with hopefulness!  I am anything but cool.

On Thursday I turned twenty-seven.  My birthday was an ordinary day.  I felt pretty ill so I just took it easy and tried (with reasonable success) to keep away from that irksome self-reflection and life-progress type of thinking.  I moved a chair under the window where I used to keep it, so that I can kick back to some music and watch the clouds and trees.  I went for a short walk and accidentally stopped to rest on a fire-ant mound, which was a new experience.  The ants swarmed my sneakers and socks.  Before I realized what was happening and managed to strip down to bare feet, the little monsters got in about fifteen bites, which remain surprisingly swollen and itchy.  Mega mutant fire ants.  My lovely Grandma Anne sent me a crystal angel ornament, which I hung in the window so that it catches the morning light and casts rainbows across the walls.  Heard on the radio that Nelson Mandela died.  My dad took me to an early dinner at a restaurant down the street.  We sat outside (yes, it is still summer here) where we could watch the commotion of downtown.  The park across the street from the restaurant is decorated for the holidays, with colorful lights dripping from the wide canopies of oaks and banyans.  Towering palm trees line the sidewalk, and strings of white lights wrap their trunks like barbershop poles.  

Maybe the end of all of this is just around the corner, right?  Remember: anything is possible!   I should probably just pray for grace and a sense of humor along the way.  Eeeeeeeeeep!  Emily Dickinson writes, Hope is the thing with feathers- that perches in the soul- and sings the tune without the words- and never stop- at all.

2 thoughts on “beneath an orange sky

  1. Ah, I loved this. Thank you. Belated happy birthday wishes. I really appreciated the ‘maybe the end of this is just around the corner’ and ‘anything is possible’ – the other day I just clung onto, and have sometimes since, the realisation that you never know what tomorrow might bring. It can bring anything. Literally. Lately I’ve been really noticing the miracles that happen – I think because things are so bad, and so desperate, I have been praying a lot or just asking for guidance and support and staying open to the fact that sometimes – or often – it won’t always ‘look’ like how I thought or perhaps want, but the support I want does show up. It’s kinda beautiful to watch. And gives me hope in the most darkest hopeless times that that can continue happening…we just have to roll with it. And also, I realise that there’s not one solution. At all. Like, one thing can bring huge benefits and shift massive amounts, and one thing can just bring a tiny almost unnoticeable change or shift or support, but it’s what we need. It’s like a prong on the ladder to healing. So even if this place doesn’t bring everything you had hoped for, there will be something in there that will be helping you. And sometimes, even the dead ends are those prongs because they can lead us down another route or they just empower us to think ‘fuck it’ or they demoralise us and we feel like shit but we eventually discover the silver lining within us – our strength.

    I’m not sure if sound like a twat but I think I just have noticed lately that there is so much healing in the shit, and there is so much shit in the healing…

    I feel like I’ve lost my sense of humour lately! I feel in survival and shut down mode because what lies beneath is so painful and too painful to feel but it feels like its taken my sense of humour with it – almost like my wounded self can’t handle my bashful humour right now, because let’s face it – things are NOT FUCKING FUNNY. This is new for me because I have always always had the ability to have a beautiful dark sense of humour. Hmm. Hopefully it’ll come back as I heal and trust this wounded part that’s so very ‘up’ right now. Turns out this grief ain’t comfortable enough yet to find the funny bits in it.

    That Emily Dickinson quote is real nice, btw.

    I have a question for you – do you feel desperately alone or in desperate need of company but because of being ill, you don’t have it or don’t have it enough?

    This is a mega comment. I just was thinking of you lately!

    How did the trip to the place go? Love. Xx

  2. “And gives me hope in the most darkest hopeless times that that can continue happening…we just have to roll with it. And also, I realise that there’s not one solution. At all. Like, one thing can bring huge benefits and shift massive amounts, and one thing can just bring a tiny almost unnoticeable change or shift or support, but it’s what we need.” <—– Yes, this. Man, your long comment is really encouraging to me at the moment. I think you write with a lot of spunk, which makes me think you are a person that has the potential for humor in almost anything. I know what you mean about it feeling zapped away in the midst of really bad stuff. It's awesome that you're praying… even if it is out of desperation. I happen to believe that the human condition is actually one of complete desperation, so don't let that deter you from praying (in whatever form you feel genuine). To answer your question…. ABSOLUTELY. I am in a very lonely period. At times I think the loneliness is taking over and becoming even more painful than the physical illness, but at the same time every medical professional (and my body) tell me that I need to live a really limited life. I happen to be in a particularly lonely spot because I moved to a new city when I got ill, so I never had the chance to establish friends before this storm hit. I don't know how to alleviate the loneliness sometimes. I am looking for help in this area, for sure… I am grateful for our connection, for one thing :). I will post soon about the trip to the NIH; came down with the flu so I am not doing very well with processing the information from the trip. THANK YOU for your comment, Lovely! 🙂

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