The confusing loneliness of the tediousness of illness

I am sick. I have something that necessitates people tearing through my flesh and bone to explore and repair what they find inside. These mere mortals examine and re-examine every inch of my tired head trying to find my CSF leak. To me, that qualifies me as sick.

I am not, however dying. A declaration I am quite grateful for, particularly as I have watched a man who, in a short half a year, I have come to love dearly and from the true depths of me, fight his way back from a series of life threatening events that to even doctors appeared insurmountable (prayers, good thoughts, light, etc for this man would be greatly appreciated). He is, we all hope, on the mend, and that is a gift to the whole world. Being in the waiting room is a lot crappier than being the patient. I pray that this stint is the last of my waiting rooms for a VERY long time. I also wish that in this world we could all take a little share of the suffering so that some people didn’t have to suffer so hard. All that said, I have nothing but gratitude for all the hard work and love that goes into trying to help a patient go from a patient back to a person.

My illness, it’s more tedious than it is deadly (I hope!). It gives me these ten or fifteen minute moments of reprieve where I forget that anything ails me at all, then a cough or sneeze or quick movement of my head forces the csf out of my nose and drives the pain into me in a way that makes the multiple scars across my body quake. It gives me times between scans to live and momentarily pretend I can plan my life out without disruption, sketch out a dissertation outline, move into a new house, ride a bike. So I spend the time between scans and surgeries scaffolding the life I have and want. By all accounts it is a beautiful life. I had a scan two weeks ago. I have one today that comes with a creepy lumbar puncture and some glow in the dark goo. As I sit alone in my bathroom having given up on my hair and instead listening to Adele and shoring myself up for a scan, it is not the procedure I dread, it is the certainty that the problem I have cannot be fixed without yet another craniotomy. Today’s test is not to diagnose, the diagnosis is certain, it is to plan, to map a journey into my body.

Strangely, though I know the outcome, the moments before I hear it said aloud and with a tinge of remorse are some of the hardest to bear. These are the loneliest moments. For each surgery I am surrounded by a community I love trust and admire — my team of heroes. Yet, there is a loneliness to being the one in the gown, the one in the bed, the one in the machine or strapped to it. The world watches you, waiting for you to rejoin it but despite even the best efforts of those that love you, they cannot stop the world from turning, or alternatively crumbling while the patient sits in limbo.

Today I get to hear the news I already know, a brain surgery sits on the horizon. Then, I straighten up, smooth my uncombed hair down, put my pants back on (hospital gowns are fun!) and go back to the waiting room where I can and should focus my attention, thoughts and petitions on people who need my love more than I need my self-pity.

Despite my dread, I sit in gratitude for all the love I always get, and I ask you all to spread that love around to those who need it wherever you may find them (they’ll likely also be listening to Adele).

Peace and love,

Samira

 

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One thought on “The confusing loneliness of the tediousness of illness

  1. Samira:

    I admire your courage and resolve to not let your situation rule your life, completely.

    Is there anything I can do to help you? I miss you!!!!!!!

    Your servant and friend,

    Jim

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