My Life in Shingles

We have been anticipating the work of a new roof for several weeks. Spring rains have been a beast and prevented much work being done outdoors.img_1155-e1496258786125.jpg A couple of pallets of material have been sitting in my driveway awaiting their purpose in the roofing project. Nothing as dramatic as ‘baited breath” but all await the element of newness and covering it will provide. As a ‘renter’ we were not a part of the decision making process. So as these stacks of material sit in my driveway, I have no idea the color or design that hide beneath their wrapping.

The day it finally begins, naturally, is my day off. The workers arrive around 7am (prompt fellas) and I a bit too eagerly go outside to greet them and offer them coffee. [Yeah, well,  I’ve never been a part of this type of project and I just assumed that’s what I’m supposed to do.] They decline and I’m sure there was a bit of eye rolling as I turned on my pale-blue fuzzy slippers and return inside.

Now, my logical brain fully understood what was about to happen. They would be tearing off all of the old shingles, do some repair work and then place new shingles on the roof. Somewhere between logic and reality is where I tend to reside and this bliss (usually) keeps me content. This day, holy guacamole, bliss it is not.

The workers walk the perimeter of the house getting things moved from harm’s way and laying out their tarps. This is when I discover my family room is pretty much a fish bowl, me looking out, them seeing in. I know they are doing their best to not look in and judge my dirty floors or how desperately I need to vacuum. I wait for them to move to another spot, so that I can close the curtains without being rude. The woven curtains are really glorified sheers, and offer a pitiful amount of coverage. But I at least, feel less obvious.

Loud….Sweet Jesus, it is SO loud. I’m not sure how daintily I imagined they’d be removing the old roof, but this sure-as-shit is louder than I figured. I tried to busy myself, wash dishes – “oh hi, dude right outside the window”, I tried to paint my nails –smearing them as I jump at every overly loud sound. I surrender to just well, surrender my day. While I’m wondering how I will survive this day, it dawns on me; the analogy in this process. This process, is the process of my life.

Like life, damage isn’t always visible. I didn’t seem to notice there was roof damage, inspectors surveyed the roof up-close-and-personal and discovered the damage. Sometimes we keep people at a distance so they don’t see our damage. We think we are doing a good job of keeping up appearances and all the while, something is faulty below the surface. Perhaps it’s something that occurred during a storm or time of trouble in the atmosphere. Perhaps it’s because of a repair-job in the past that wasn’t up to par.

We may have invited the inspector to assess the damage, hoping we can fool them or hope that they’re lousy in their job. We are so incredibly vulnerable up close. Under scrutiny. It’s when they find a chink in our armor, our protection, our covering, our roof; that the real work begins. A crew will arrive and set your world spinning, and it certainly won’t be quiet. We hide behind coverings and partially sheltered windows, keeping our damage, our hurts, hidden from view. But as the discovery crew mingles around our perimeters, they see through the meager sheers. While they may not fully see our damage, they can see our frame, our shadows.

The noise level inside my home is beyond a nuisance or annoying. It’s painful. As a headache begins to pound, I understand more about the daily noise we live with. We busy ourselves with activities and tasks. We hear the clamor of a washing machine or dryer, but it’s familiar. It’s a white noise; almost lulling us into contentment. This racket, geez, it’s unpredictable, unfamiliar and unwelcome. While I know that progress is being made outside of my view; I can’t help but wish them away. I begin to justify myself – it couldn’t be that much damage. They don’t know need to replace the whole roof. Couldn’t they just patch it up?

I’ve become a master of patching-it-up. Patch on a smile or a new hair color, all the while I’m leaking somewhere below the surface. The litany of my shingles that are in disarray are as tall as a ladder going to the top of my 2-story house. I can choose to repair one or two, here and there, but they won’t match. I can replace just the shingles on one section of the house, but the other sides have faulty shingles of their own.

The tarp the crew has laid out to protect the surfaces around my house will also help in the clean-up process. They will soon have the ability to gather up the tarps and discard of the junk easily into the dumpster. However, in the meantime, it is a hot mess of scrap and debris and an overturned garbage can. Much like the debris of my past, it seems to be an overwhelming disaster zone. I can gather it all up and discard it and present the illusion of nothing having been overturned. You know as well as I, no one is ever truly fooled by this swift-swoop-and-chuck routine.

Even as the destruction-construction crew takes a break, I sit in anticipation of their return. I’ve lived many years, with a certain level of nervousness, a palpitation of anxiety in my ears; a vibration that hums below detection or description. It is like the dog whistle who’s pitch is undetectable to human ears, but to a dog, [I’m assuming] it’s torturous.

As predicted, the peacefulness of their lunch break has succumbed to the pounding of a thousand hammers (maybe 6 really). Even as I focus on my own thoughts, my brain wanders. It sits down and protests forming 3 cohesive words. It causes me to wonder the weirdest things, they converse and laugh. A random wohoo seeps through the rafters. I of course, come up with clever conversations and challenges that would evoke a ‘wohoo’, but let’s be honest, they probably just evaded getting pooped on by a bird while atop the 2nd story roof.

The process of remodeling one’s life is likely akin to this roofing process. Damage. Inspection. New material. Destruction. A LOT of noise and mess…but you see, this process is not yet complete! I’m in the middle of it. My home is in the destruction and mess phase. My life is in the understanding of repair needing to be done. Both home and life require core repairs to stop from future damage taking hold. While the new shingles are still under wraps and protected from the elements (and from view), so too is my future. Oh yes, it’s tempting to peak past the packaging to see the new shingle color, but the end result will be so rewarding. Likewise, as each day dawns, I have the opportunity to view it with no wrapping obscuring my eyes. To view each opportunity as a mess and destruction or the reward of a job well done.

 

 

I’ve Been Slimed

 

The day after (the election) feels as though I’m in the  sequel to Ghostbusters. For those of you who are not familiar with Ghostbusters 2, allow me a moment to share the CliffNotes version of the storyline…

The ‘Ghostbsters’ find themselves bankrupt after a heap of lawsuits. Lawsuits that came about AFTER the citizens were spared from some big evil marshmallow dude. NYC  officials extend a restraining order so that no more ‘damage’ can happen to their city.

However, problems arise, as they always do, and the Ghostbusters are needed again. The people who cried out for their heads now need their help, [again]. It seems as though some evil is flowing through the veins of the community, infiltrating every crevice of life.

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It is discovered that it is indeed  flowing through the veins of the city. A pink ‘mood” slime is flowing and bubbling beneath NYC. A slime that feeds on negative emotions and anger. As fear and craziness ensues, the slime thrives…

Looking around social media today, I can’t help but feel slimed. Fear and panic, ugliness and broad sweeping beliefs that the sky is falling.  The vacant faces of news correspondents wondering how the heck we got here. Yes, the world has changed overnight. Finger pointing and hatred gets us nowhere.

I’m not one to give in to the panic, at least not today. I’m not sure if it’s having grown up in a politics loving family or the fact I’ve survived so much in my life that I refuse to give one faction that much control. I refuse to give in to knee-jerk reactions, fear and hateful speech.

I may be just one person, but I’m not going give another ‘one person’ that much power. [Unless it’s Jesus himself] I will not bury my head in the sand and hide. I won’t protect myself from impending doom and worry about ‘me’. As in the Ghostbusters movie, good vibes and unity can change the charge of the slime.

Hope is alive. Hope is universal. Hope is unifying. Maybe it’s a cheesy sing-along-song to unite us or maybe it’s the unity found in the  beloved Cubbies winning their first World Series in 108 years. 108 years y’all!!! For 107 years, the mantra has been “maybe next year”. This was the year!!!! But seven days later, the world is going to end.

I’m going to do my part to make a positive stamp on this life. We win, friends. The light always wins. A little flicker of a flame cancels out darkness. Always!

So here’s my a little ditty to get us connected….Love…Love keeps lifting me…

 

 

 

 

 

 

 

How Not to Fake an Illness

“..but you don’t look sick.”

Ugh, I can’t begin to count how many times I’ve heard this over the last 5 years. Shortly after MyLove and I were married, we discovered I had Chronic Kidney Disease. Long story short, my kidneys were no longer filtering correctly. Their function has ebbed and flowed like the stock market. Sometimes they have dropped significantly, only to rally and lead me to believe I was in the clear.

In recent months, I’ve felt really rotten. I have battled with healthcare professionals to give me some kind of answer. My stay in the heart hospital was brushed off as acid reflux, my fatigue was simply a side effect of my depression. While this may have been the case for some, I knew better. I know my depression. I’m sort of an expert at it since I’ve battled it since my teens. THIS, this fatigue was not part of my depression. And I’m pretty damn sure that acid reflux does not land you in the heart hospital for THREE days. With a simple eyeroll and swish of a pen, I was dismissed. Just. Like.That.

I begged and pleaded with a nurse practitioner, send me somewhere, anywhere, anyone. I didn’t care, just help me find someone who will truly listen. Cue the harp strings and angelic voices, I found a doctor who not only listened, but had answers. I had a diagnosis, I actually had more than one. [Autoimmune diseases tend to hang out with other autoimmune diseases; you don’t typically just have one.] I have a B12 deficiency, Fibromyalgia and Ankylosing Spondylitis. Stir that all up with some kidney disease and you get a pretty pitiful me.

The fatigue is overwhelming. The pain, constant and persistent. But, I don’t look  sick. Upon closer examination, you may discover the plethora of medications have caused hair loss. MyLove jokes about my eyes clicking* when we’re trying to settle in for a night’s sleep. And sleep, oh that jokester. Some days all I want to do is sleep, and at night, not a wink. I catch a nap occasionally, but it does not recharge my batteries. It’s as if I’m a defective cell phone cord, never fully charging. The wicked humor of my disease, when I’m idle too long the pain is excruciating. If I try to do too much, and I’m run down for days after. A roller coaster that makes you scream in anticipation and nauseous all at the same time.

While I’m busy trying to stay busy, the stuff that is supposed to keep my body held together, is quietly screaming inside. The medication designed to help alleviate the worst of it, makes me more miserable. No, this is indeed how to NOT fake an illness. This is how to fake fine. I don’t want pity or to look pitiful. My pride screams in a voice that resembles mine. I want my normal life back. I want to scream over the wasted years, I squandered my health as if it would always be well.

It’s in the screaming and noise of self-pity that I find my new-normal. I’ve discovered that I am a work-in-progress on MANY chapters of my life. My resume has now been altered, subtracted and added to. I don’t have the course perfectly laid out in front of me. And being the rebel I am, I would have thumbed my nose at the ‘best laid plans’ and go it my own way, anyway.  I’ve met people on a parallel path, it is a beautiful symphony of tears and cheers. We have become fighters for our own health AND our diseases. While I am no expert on the disease, I’m becoming an expert on my diseases. Trust your gut, your inner voice, press in and press on. You are your greatest advocate. Fight for YOU!!!

Life is a journey with rough terrains, smooth sailing, rocking the boat, dancing in the rain… and some days, you just fake it to make it.

 

[* that clicking noise, persistent dry eyes and Uveitis]

Today

Today I know I have Ankylosing Spondylitis

Today I will grieve the life I had planned
I will be sad,
For me
I will cry
And cry out
Why me?
But just for today
Today,
My body is broken
And waging war upon itself
Today,
I will be miserable and shout obscenities
I will be angry at no one in particular
Just because, today

Today my precious granddaughter turns three
Today,
Her smile will warm me
For a moment
Today,
I will cry
For her
She won’t know the fun loving
Sit on the floor
Putting puzzles together, Grandma
For very long
But today,
She has me
The grandma no different
From yesterday

Tomorrow,
Is not promised
In life or
In death
In joy or
In pain
Tomorrow is,
Unseen and unpredictable
The plans we make,
Can change in a heartbeat
We cannot escape tomorrow,
Wishing for yesterday

Yesterday,
Is gone
It wasn’t
Bad or
Great.
But yesterday,
I didn’t have AS
Yes,
Logical brain,
I did.
But I didn’t know,
Yesterday

Yesterday,
Sometimes,
Looks better in the rear view mirror
“Objects may not be as
shitty as you remember”
Yes,
Yesterday might have
really sucked, too
Everyone has a yesterday,
Not everyone,
Has a tomorrow
So today…

Today,
I will grieve
If I feel like eating
It will be
Ridiculously unhealthy
I just might,
Wash it down
With some wine
Today,
I will roll around
In self pity
For me
For everyone around me
But just for
Today

Only today…