Loss and Grief in Many Forms

This article was originally published on the Wake Forest School of Divinity student blog, “The Tablet,” on April 4, 2017.

Last month I had the pleasure of taking Dr. Marsha Foster Boyd’s weekend class on Death and Grief.  Friday night was great, but by the end of the evening, I was feeling a bit run down.  This is normal for me though as my body usually requires more rest than healthy bodies do.  But Saturday morning I woke up with a very upset stomach, and even though I tried to talk my way out of it, it was apparent by lunch time that this wasn’t my normal sick.

I went down first, then my youngest son Griffin, then by Monday it hit my middle son Gage, and by Wednesday, the stomach virus had made its way back around to me.  Oy vey!

During my short presence in class though, I recognized a theme for my grief.  Most of my loss is not centered on the physical deaths of people I love, but rather the emotional deaths of ways of being.  Grief that I have a disability that will only worsen as time goes on, grief that I will never be able to have any more biological children because of this disease, grief over a future I had plans for.

I thought I had done a good job of dealing with this grief over the years.  I’m a “suck it up buttercup” and a “someone has it worse” kind of emotional healer.  I get knocked down, and jump right back up again, brushing off the dust so as not to leave any marks or wrinkles on my pants.

But on March 9, 2017, that changed.

My treatments were not as effective as they had been, so my rheumatologist and I had the “it’s time to change your meds” talk and I decided that an invasive chemo option would be the best fit for my busy life.  While the chemo would make me ill during the two infusions I would have two weeks apart, I wouldn’t require any infusions or shots for six months after that.  This gave me freedom.  And in a life that’s filled with constant doctor visits, infusion every eight weeks, blood work every four weeks, weekly, and daily meds, this gave me hope for a sense of normalcy.  No shots or infusions for six months…I’ll take the puking (after all, some people have it worse)…sign me up!

Then came infusion day, and forty-five minutes into said “miracle chemo drug that I was pinning all my desires of not being a pincushion on for the next six months” and I started to break out into hives.  It literally started at the top of my head, the itching, oh the horrible itching.  Then my ears felt like they were on fire and turned dark pink and even swelled up a little.  Then the rash started on my right cheek.  My doctor pulled the plug, er rather, the needle.  No more of this medicine, I was having an allergic reaction to it.

Wait, that’s not how this was supposed to go down.  I was going to have six months of freedom, and within ten minutes it was decided that the best, and only, treatment option left for me at this time would be a shot every week.  I walked in with plans for six months of nothing and walked out with a shot every week.  That’s not cool body, not cool.

I was on the floor, not in a physical sense, but an emotional one.  I came back to what we learned in Dr. Foster Boyd’s weekend course.  Grief comes in many forms, at many stages of life, and hits us in many ways. This was one of them.  I needed to grieve the loss of this idealized plan.  There was sadness, anger, frustration, questioning.  There were tears of rage, hurt, and pain.  More importantly, I know the loss and grief I am experiencing is probably the only normal thing to come out of this situation.

Nose Rings and New Meds

I’ve wanted my nose pierced since middle school.  My parents would never allow it, and then I ended up with a family of my own and shied away from the idea primarily due to my intense concern over what other people might think of me.  Then, I’m faced with another curve ball in the treatment of my severe rheumatoid arthritis, only two options left at this point, both strong chemotherapy drugs, and suddenly I find myself on an unassuming Friday morning in a tattoo parlor in downtown Winston-Salem with a cheerleader and a needle through my left nostril.

How in the hell did I get here?  It was a few weeks in the making.  Conversations with my doctor began a couple of months ago when current my infusions began to lose their efficacy.  Difficulty sleeping, unable to control pain, fatigue, stiffness that lasted well beyond the morning, fatigue, nausea, swollen joints, bloodshot eyes, and did I mention fatigue…  We’ve tested for Lupus, it’s still inconclusive at this point given my plethora of autoimmune diseases.  At my most recent infusion a couple of weeks ago, on a Monday, the decision was made by my nurse to email the doctor.  I was not feeling well at all.  It was obvious the current drug was no longer working.  By Wednesday I was presented with two options from the nurse.  My last two options at this point.

The itch to do something abstract is always there, in the back of my subconscious, lying in wait for silly conversations when I can amuse friends with things my pseudo-persona would do in another life. In moments of facing my mortality though, the itch becomes an urge, which this becomes a nagging voice in my head, “If you don’t do X now, you never will.”  Taunting little witch. X could be anything.  Trying a new food (check), climbing a sort-of-ish mountain (check), getting a tattoo (check), learning to fly a plane, zip lining, holding a baby gorilla. This time X was a nose piercing.  It started with asking friends, “Do you think I’m badass enough? What about boogers? Do you think I could handle the pain?”  Then, it lead to calling around, getting quotes, and asking for recommendations from fellow bejeweled buddies.  My husband said to wait.  For when? I’ve already been waiting at least twenty years. And then, I made the decision to do it, and well, if you know me at all, you know once I set my mind to it, I’m in.  After all, this is *the* life.

I did my civic duty as a perpetual patient on immune-suppressant drugs and told the piercer, he was unfazed. I made sure to pee beforehand too.  Wise choice.  I’m a pee before anything kind of person though.  Pee before we leave the house, pee before I get on the plane, pee before preaching.  Peeing before a needle is shoved into your face is not just for pee before kind of folks though, I would highly recommend it, because yes, it hurts.  And your eyes will water, but you won’t be crying.  Biology is fun like that.  Biology is also fun at reminding the chronically ill that our clocks are turning a little faster than everyone else’s, so when those reminders come up for me, I do crazy shit like X.

By the beginning of March my body will start to remind me that she and I are not on the same page.  I’ve chosen a treatment option that will suck for a short while, but if all goes as planned, I won’t need another infusion for six months.  Weeks zero and two of the new treatment will include a cocktail of pain meds, antihistamines, and steroids before I even get the actual chemo drug (on a drip for 4 hours), and then Zofran afterwards for the nausea. But once those couple of days are over and done with, hopefully it’s six months of no infusions and needle prods in the arm…although I’ve already established needles don’t bother me, it’s still nice to know my veins can have a rest.  From the meds at least, there will always be blood draws and diagnostic testing.

Final thoughts to add, no, a nose piercing is not cultural appropriation.  Women, and men, from many cultures have been piercing their bodies for many a century.  I’m not appropriating any one culture by doing so.  Rather, there is an acknowledgement of all those who have done this in much more painful ways than sitting on a padded table with a person wearing sterile gloves and with much more spiritual significance than Darth Vader standing in the corner of the room.  Also, don’t listen to people who say it doesn’t hurt.  It does.  Shortly and intensely. Then, dull and achy.  My teeth on the upper left still ache from time to time.  I’m only two days out though, and I cannot take NSAIDs (yay my body) and that’s what the piercer recommended, so I’m going this route pain med free. (Don’t fret, I have a pretty high pain tolerance, except for the time I needed my gallbladder removed.  That shite hurts worse than 38 hours of natural childbirth.)  Things that still concern me that I think about…no, I’m not trashy, yes, I can be a minister and have a nose ring, and possibly, I just won coolest mom of the week. I still always mull over my mortality, getting my nose pierced doesn’t automatically keep me from thinking about it.  I live with it constantly, sometimes hourly, sometimes daily, sometimes monthly, but it’s always there for me.  I lean against the wall for stability, I have a cane, my shoes don’t have laces, these are subtle reminders that my clock sometimes mimics the Bop It! Game and speeds up and up and up with each round I go.  I’m alive now.  If I want my nose pierced, so be it.  I am a badass.  A badass person who has experienced pain in a multitude of ways and still drags herself out of bed in the morning to minister, because my life is a ministry in action. I love my calling and I honestly can’t believe somedays that I get to help people deeply, spiritually, compassionately, and fully in so many ways.  And now, I get to do all that and rock it with a nose ring!

Oh and if someone has a hook-up on holding a baby gorilla, that would be AWESOME to mark off the old bucket list!