Roles we play

As human beings, whether we are straight forward or a bit more mysterious & in the shadows, we all play certain roles. Child, sibling, co-worker, friend, ex, virtual connection, parent, aunt, cousin, etc. I play many of these roles, but mine have decreased greatly in past years. I lost being a teacher, co-worker, graduate student, apartment renter, car owner, driver, bar & restaurant patron, shopper, independent person, etc. I gained as well-facebooker, twitter-er, patient, blogger, documentarian, the caregiver's person, bed sitter, disabled person, etc. Often I feel just 2-3 roles. The real me, the brave face hiding me, & the trying so hard but the facade breaks down me. It's a strange world in the brains of the chronically sick.

 

It's all me but I'm split into 3

 

Often I just want to hide.

 

Or keep my sliced life at a distance

 

I try & disguise the pain behind a mask.

 

& end up giving bits & pieces of myself to different people, but did they get to see the whole me?

Feeling the shingle's fire

I first got shingles my senior year of high school. It started by my lip underneath onto my chin (following the nerve there) itching like crazy. I thought I had gotten a bug bite but there was no mark. Within a few hours-the next day blisters came up & the race was on. Since then, aged 18 through now, i've had shingles almost always on my face at least 30+ times. I now can feel them coming on, the stress bringing the fiery itching & burning until the blisters appear. I know this bout is brought on by my weakened immune system after spinal tap & spinal shots, & this horrid moving worries. Last night as I felt the shingles silently making their way to the surface, I let the tears come as needed, for holding them in would only further their strength.

 

Grieving the soon to be lost

Think about someone or something you use & love & depend on. For some a trusted hairdresser. I know people who have had longer relationships with the people who cut their hair than marriages. For some a beloved store-records, organic food, bookstore, etc. Maybe a great boss-a co-worker who goes above & beyond-an assistant. Your favorite waitress or coffee shop server-they give you a little extra topping or French fries. A company you work closely with maybe-you feel your business couldn't last without them. Now imagine losing them. They move, retire, get a new job...for whatever reason they're gone-or you are. For me, preparing to lose my doctors here feels like a death. Yes I know I might get better doctors, help, etc. I don't care. For 5 years my health & life have been in the hands of people who really cared on a deeper level than just a dr. They went the extra mile-trusted my opinions-listened to my ideas & loved that I really knew & listened to my own body & respected that. As I'm to call a pain center in Little Rock & try to see if they will take my bizarre puzzled case on tomorrow, I grieve. I can't imagine starting over. Again. From scratch. The 5 year 5 inch medical file relationship is almost over. It's like saying 'there's other fish in the sea'...yes maybe, but wow, that magically doesn't stop the pain. For me this is like a marriage ending. A part of me dying. Getting back on the dreaded merry-go-round doctor hunt. Is it worth it? Right now, deep in my heart all I feel is a resounding no.

 

Living underwater

The medications I take make my legs feel like jelly. The sense of impending doom makes me feel like I'm submerged under water, but yet I can't drown. There's no assuring oxygen deprived thoughts of 'it will all be over soon' yet the panic & fear grow stronger. That has been me, since the day I found out we were leaving, & now, the day I tell my beloved doctor, the panic rises into my throat. I can't breathe or think but no hand reaches into the water to pull me up.

 

Day 16 writing style #HAWMC #WEGO

For me, something, a picture or event just goes from brain to blogsy. I'll be watching a movie & have to stop & write my blog...example: after 'fight' tonight with family about moving

Today I realized that from now until we move there will never be a day when I'm not asked to go through boxes, asked about items-should I, can I, may I keep things? Things I love. Things that bring back memories. Happy memories, sad memories, bittersweet memories. Each item has a story, & each story carries grief, laughter, love, & letting go. Mom & dad see my reaction to this as anger-when it's the opposite. Each item I see Zoe, from the first day I got her until the day the vet put her to sleep. I see my overseas life-when I did something that mattered. I helped people...there was a need for me in this world, & there really isn't that need now. I see old friends-some I hold so close to my heart even though I've lost them in one way or another. I see Kris-my late brother. I see my old future potential. I see my test results that admitted me into graduate school. I see gifts from my university students. As much as I hate to say it pain overwhelms any feeling of joy at looking at these precious items. Mom & dad think my resistance to change boils down to drs & morphine, when it's grief over losing professionals who see me as a person who is legitimately hurting & in pain. Mom feels she is the whipping post, dad feels like the joy he used to feel can never be found again, & I feel like an anchor weighing them down from sailing into their sunset years together.

 

 

Submerged

For a chronically sick person, we all know that whether it's physical or emotional, etc there is the overall picture. Pretty parts, confusing parts, abstract bits, things you somewhat understand & some that are baffling, but if you look at the close up, there is so much submerged below the surface. Much darker, supportive, hidden parts. My hidden things are so humiliating. So embarrassing. They make me feel like I'm 7 yet 87 at the same time, yet I'm no Benjamin Button. As open as I am there are a few things I keep deep, deep down for fear of the reveal of some things that happen often & feel so crushing.

 

 

Prettying up the mundane

Lately a few things have happened-been said-etc in which the subject was played up or down to disguise the honest truth. Not lies, just made-up or tweaked in order to appear a bit better. If you strip down me to my absolute basics, am I too much to take on? Have the medicines that make me gain weight change minds? Do the humiliating truths of the basic life & personal care & lack of force someone's decision one way or another? Is the real me, not cropped & photoshopped so different that offers & futures come down to that? The real me? I don't know if I want to know the answer. Just like this simple picture of my AM/PM medicine strips is made to look prettier, cooler looking...not as boring & honest as the actual 'weekly filling of the pill strips' that I hate doing just too much for someone to admit into their lives? I honestly don't know.