For whatever reason I’m unsettled today. I read about the senselessness that happened in Afghanistan, I ached about the grief of a friend, and for whatever reason, my brain has been chewing on some of the harder aspects of the trip we took for tests and surgery to deal with my tumor last year.
I don’t know why these days and these moments of stewing on things that I’ve mostly felt my way through and that happened in the past come up as they do still.
But they do. Still.
Today I was thinking about the “extra” hard parts. The ones that weren’t directly related to the tumor that I had, but that complicated the situation just the same. I thought about how ridiculous it felt to have to go to another hospital–when I was at the foremost research hospital in the country–first because we thought I had pink eye (I didn’t) and then because my ear drum ruptured and I had an ear infection. I thought about how terrified I was when the potential case of pink eye nearly sparked an epidemiology scare that I was all but told could set off a chain of events that would wreak havoc not just for me but potentially for the entire institution performing my surgery. I thought about how much scarier it made tooling around in an unfamiliar hospital and having tests and procedures was when I could hear nothing out of my right ear because my eardrum had ruptured. I thought about the scowls I got at my choice to continue to breastfeed through the entire ordeal, and my choice to bring my baby along (and I was told this plan would be ok). I thought about how much easier it might have been if I hadn’t done all the research I had about breastfeeding and had just taken the doctors and radiologists very, very conservative advice rather than trusting my gut and the advice of the lactation consultants I met with and pumping and dumping but only as often as my lactation consultants advised. I thought about the disequilibrium and isolation-fearing despair I felt when my husband and my not quite three month old babe were told in no uncertain terms that they could not stay with me in my hospital room and the scary words of warning intoned everywhere we went about infectious diseases she could catch. I thought about the meds I wasn’t given to ease my anxiety prior to surgery and the pain meds I wasn’t given after the surgery again because of overly conservative medical folks who didn’t know how many choices there really are for a breastfeeding mother.
I thought about how terrifying it all was and how out of control I felt and how this was all outside of the actual surgery itself… the fear that I’d built up over the entire year about the feeling of being laid out on the table and positioned to be cut into. I considered how very much it felt that I was the ‘trouble’ patient who had so many different outside issues that I insisted on juggling.
Then the post-op infection. The pain and the helplessness. The doctors who were afraid to touch me. The scolding I got from local doctors who told me, “That’s what you get for seeking care 3000 miles away,” the day in the ER as my neck continued to swell, and the doctors didn’t come and didn’t and didn’t come… the tiredness, the vanco drip for two days, the ache of being away from my big girls again so soon after we’d returned. The vulnerability of another unlikely thing going wrong.
I thought about how much more bleary-eyed caring for an infant feels when you have delicate surgery and a post operative infection requiring two solid days of intravenous anti-biotics. I thought of my husband pacing two different hospitals on opposite coasts with her in the middle of the night so I could rest. I thought about trying to hard so be the one to soothe her because she just wanted Mommy even before I really felt well enough to do so.
And then I got an email from my protocol folks asking me to come for scans and clinical appointments at a date that will be tricky for us between homecoming and kiddos in school and all that I had already been ruminating on came up that much more and was compounded by how stuck we are in this Navy lifestyle, and how isolated. I feel it so much more when the dates we are called out for are crunchy for us and I need to think through contingency plans. We’re 2000 miles away from our families and all of the people that it feels more ok to impose upon to help with our kids when we need to jet set to the other side of the country to have pictures taken of my insides. The friends we’ve made come and go and we’re in a season of rebuilding new relationships after moves and Navy attrition have taken confidante after confidante and friend after friend and continue to do so.
I feel very vulnerable sometimes. I feel the heavy reality of how easily life can turn on a dime and how exposed and isolated I feel in those moments.
I am unsettled today. Truth be told, I am unsettled by that last couple of sentences a lot lately.
It’s not that we don’t have wonderful friends and people who care about us. We do. They’re all just scattered at varying proximity from us.
It’s not that I don’t understand and give thanks and praise to God for how well everything has turned out so far.
It’s just that I’m so disabused of the notion that there could be any guarantees that it always will.
I am unsettled. I live in a world where a husband and father of two kids could suddenly go and massacre innocents, walking miles in the middle of the night, and searching out people to harm–children to harm. I live in a mind and a heart that feels as much empathy for him and his family as I do for the innocents who were slain because I am positive that such a thing could not have happened outside of the grievous mental wounds of war. I ache at the horror of it and the terror of retaliations and the questions it stirs up.
I live in a world where one in a million tumors can hit you at random while you’re pregnant and then hit you again in all the ways the doctors say they probably never will. I live in a world where I know people who are living the reality of those tumors doing what the doctors say almost never happens every day.
I live in a world where the assumed levels of support aren’t always accessible even in a life blessed with rich friendships and loving family.
I am unsettled today. And sometimes when encountering the major and minor versions of this uneasy world and it’s lack of easy answers and inexplicable pain, I think unsettled is the reaction that makes sense.