Seedless

So what do you do when you have a blog about a health challenge and you've shared everything but your bra size? Which is especially traumatizing when you don't know what your bra size really is. Victoria's Secret will tell you. They can tell you your actual bra size. That's their secret. I fooled myself for years that I was larger than I am. Until I went to Victoria's Secret. The slim little sprite from lingerie tittles over with her mini computer worthy of an Always commercial.

You girls know what Always is. Still don't know why they named them 'Always' when it's only once a month.

In any case, the sprite asks if she can help me. I want to ask if they carry breast implants. "I am looking for a bra!" I say, with enthusiasm worthy of a Raspberry Award. She whips out her measuring tape and wraps me like a gift. Numbers tack the circumference of my chest. I take a deep breath hoping it will enlarge my cups. Alas, tea cups it is "32B or 34A" she says. Seriously? I think something happens when you walk through the entrance - passing angels in thongs on the way. Breasts are reduced to the size of gumdrops and I wonder why I am there. Oh yes, to buy a bra, when duct tape with cheetah print will do.

But back to the blog. Today I have a lump. Not the ones on my chest. It is a lump in my groin where the top of my left thigh meets my base of my trunk. It is just inside of my hip bone. I was surprised when my fingers accidentally collided with its face at two a.m. Then I remembered - about a year ago - I noticed a tiny pea-like bump in its place. It was not large enough to be anything but a thought. With the whirl of my spine, the thought went away and became the furthest think from my mind. But now it is heard.

The lump does not hurt. So in a way it is refreshing to have a concern without pain attached to its skin. Today I see my internist to begin the process of discovering why it is there. It is now the size of a grape. The wish I have now, is that it is seedless.

My daughter is home sick from school and hears me explaining this discovery to a friend. Her innocence momentarily drowns my concern as she breaks out in fevered song, "My lump! My lump! My lovely lady lump!" And again I am removed from my worries because what matters most is life. I return to writing and wonder again if this is worthy of a blog. A lump could be anything at all. But blogging is how I process fear. There are no secrets when I am here. Awaiting a truth I may not wish to know. Kind of like a bra size. With tea cups. Served by angels in thongs in a world where secrets are never meant grow.

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Faith

What is faith? Is it praying because it is the right thing to do? Is it going to church? Is it believing in a God in human form, or an energy that wraps the universe in its hold? For me, faith was something I took for granted long before I really needed to know what it was.

I always prayed as a child. It was as routine as breathing. An involuntary exercise that would save my life if I died in my sleep. Or at least that's what it said could happen in my nightly prayer. "If I should die before I wake, I pray The Lord my soul to take." I wondered why adults would create a ritual so morbid in its theme. Why this didn't prevent me from sleeping I do not know. But it definitely affected the prayer that I practice with our own children.

"Now I lay me down to sleep.
I pray The Lord my soul to keep.
While angels watch me through the night.
Until I wake in the morning light.
Ahem."

The ahem part started when our son requested a twist at the end. Then our youngest needed a real attention grabber. So we turned it into a rap. Tupac would be proud.

I prayed every night as a child. Got down on my knees - the hooked rug that I had made, knotted beneath my knees. My elbows propped on the bed. My hands in prayer position or fingers folding into one-another in case eyes fell upon my back. Prayer made me feel good. I was behaving when I prayed.

It's funny how we can pray so diligently as children, then forget to do it as adults - just when we need it the most. As a child, prayer was never something I talked about with friends. I never told a friend I would pray for her to pass a test. But I still prayed every single night. Then, as an adult I rarely prayed, but talked about it as if I always did. Promising friends a mention to God, as though I had a red telephone phone installed just for Him.

Then my life took its turn. To the darkest place. My world was shattered and I was left in a haze of middle realm. I had never been so stripped of spiritual skin. As though it was ripped from my bones so that I might finally understand why faith is as real as the wind. It is the most powerful storm that surrounds the tiniest lamb. And then whispers where it can find shelter for the night.

Faith is found when your heart is a vice that cracks your chest so wide - only God can fill its place.

Faith is writhing with no one to hear your pleas and knowing you are heard. It is when your words swim through tears that burn your cheeks. And when the crying stops, your heart feels an other-worldly release.

I have learned one thing that faith is not. It is not getting what you think you want. It is accepting the challenge and receiving the strength to carry on. It is when others pray for your body to heal and your heart starts healing first. But mostly, faith is when fear is replaced by resolve that all is as it was planned - before we ever set foot on this earth and started to fold our hands.

Monkey Wrench

Disclaimer: Wine will make this funnier.

Today I woke up with a monkey wrench on my nightstand. Strange things happen when adjusting to a wheelchair.

I am becoming more like a man every day. I look at women's chests when we talk. So I must strain to look up. Up. Up. At their eyes. Which aren't really eyes anymore. More like nostrils. With eyes. So I plead with the public. Unless you need a nasal assessment, it's best to come down to our level. Not morally. That might be disruptive. But at least physically. Just find a chair and pull it up. Because if it's me you're talking to, you're going to be there a while. Or else, look at it as an opportunity to tighten your quads, and squat. Burn those buns. Come on. At least do it for me. Someone has to do my squats for me. Or lastly, just back up. Don't beep or anything. Just scoot on back. That alone will not only save us from experiencing any unduly garlic breath, it will offer a clear line of site. To your eyes. Without craning our neck like a, well, a crane.

We just modified our home so that the stairs and doorways are more accessible. We oiled the stairs. Now I just throw myself down them and smoke a cigarette when I'm done. Or I use the stair lift. Doorways are wider which is nice because now I don't have to blame doing so on the width of me bum.

My husband no longer needs a leveler around the house. He just sets me and my chair in the middle of the room. So far our entire house is crooked. I am also now hooked on Dramamine.

Not everything is easier. If you ever wonder whether someone is really disabled, just put the wine on the top shelf.

The plusses of disability are many. But no one likes to talk about that because then random people would just start throwing themselves out of cars.

I no longer worry about a panty line. Because no one ever sees my tush. Which means Spanx are only things I get for good behavior.

Pedicures last longer. And, I now know when they are talking about me in the nail salon. I learned how to say gimp in Korean!

(It's 장애인.)

My dog, Reggie, is a dachshund. He is my therapy dog and rides on my electric scooter with me. It has two speeds. Turtle and rabbit. But he has a hard time keeping up. Because it doesn't have a sloth. Or a caterpillar.

Tom Selleck's mustache is tweeting. Like you need a punch line for that.

I've thought of attaching a Roomba to the bottom of my wheelchair. So then it can really suck.

So that's about it for today. Things I've thought about because a walk-about won't get me very far. It's not like I go anywhere but to doctors' offices, so I have plenty of time to think about such things. And my odds of getting hit by a truck have been greatly diminished. So it works for me.

Oh. And please know. I get it - that this is horrible. Sometimes I cry like a child, my shoulders too weak to carry on. But, Do I wish this never happened? Not for a minute. Because I would have never known how strong one can be, when your strength is stripped away. Or the goodness in the world, that I thought had gone astray. But most of all, I would have missed the chance to think about this predicament I am in. To blog about so many thoughts that began with a simple monkey wrench.

Random Thought

Disability without humor is like cancer without scarves. It may not be a cure, but instead, may soften the blow of the wind.

Late Bloomer

An author on Twitter (@DebraEve)found my story and kindly ran with it into a blog. Her site is Latebloomer.com. And so once again, our blessings keep rolling in. Someone asked me the other day if I was angry because of my situation. I could not say yes. I really, really tried. But I am not angry. We are so fortunate to have the support system that we do. I feel relieved that I broke down my ego and asked the world for help. And realized there nothing to fear but myself. I have never felt so naked and still so clothed in armor at the same time. Life may not be what I expected, but what ever is, really. Here is my story through Debra Eve's eyes, and heart.
http://www.laterbloomer.com/micaela-bensko

The Green

The grass is so much greener in my childhood memories. I have many of when I lived in the house I grew up in in Hawaii. The single level home with a Coconut tree in the yard; Bushes abloom skirted its trim. I would pull red honeysuckles and suck the nectar from each stem like a hummingbird stalled in flight.

But then I opened an album with corners bent by time. And a photograph caught my eye of myself standing in that yard on the first day of school. My knees were bent beneath a hand-made hem. Shoes so new they ached at the soil beneath. I saw myself standing in that grass. My hands folded into one another under tails of braids draped upon my chest. All seemed in place to my memory. Except in my memories, the grass was green.

My childhood is filled with colors so vivid they make current thoughts seem pale. For thirty years I envisioned that yard an emerald cut worthy of a queen. Yet this photograph changed my mind.

Blades I used to pull and whistle between my teeth, were scattered in a keyboard of weeds. Perhaps it is that, as a child, I chose to only see the green.

I was fascinated by the dew. How it could drape a lawn in diamonds and make the world seem new.

I took a second look. Perhaps it was the aged coating on the paper? My mind played a game with blocks of time.

It was true. I had imagined wrong for so very long. The grass was not as green. But this doesn't mean the love I felt was filled with lesser hues. It is how I viewed the weeds that mattered. And to me, they were as perfect as my mood.

Don't ever let anyone tell you a dandelion is not a flower worthy of spotting a lawn or of decorating this world with colors that dance like the blooms that trim a yard.

I closed the album and left it there. For someone else to see. Because the only memories I will ever need, are of a grass I saw as green.

Spinal Tap

I spoke with my doctor this morning. He had a lengthy and productive conversation with the neurologist regarding my EMG study. They both feel it beneficial for me to undergo a spinal tap. We will hear in the next few days when it will be scheduled. Most likely it will be in the next couple of weeks.

We are moving forward with the Ketamine Infusions. The process is infusions four hours a day, five days a week, for two weeks. The goal is to reset my nervous system. He is optimistic that this treatment will help my CRPS. He cannot confirm that I will regain mobility that has been already lost - but is hopeful we can at least stop the spread of the disease as my right leg has "crashed" in four weeks - to the degree my left leg took six months. Ketamine infusions will begin in the last part of September.

My paralysis could very well be caused by the CRPS. I will simply be one of a very few worst-case scenarios, and who knows, maybe I'll end up in some online text book somewhere and pop up when people misspell CRaPS.

He also would like to order a special head scan that chronicles the way the brain is functioning, in real-time, in order to rule out a possible stroke that may have occurred at some point in my recovery. Lovely thought isn't it? I would have at least hoped for a good drooling episode or something. But here I get reruns of sitting still. In a chair. With titanium for legs. But before we can do this scan, the engineers (Choo Choo) at Boston Scientific need to state whether the spinal cord stimulator in me arse, will get in the way of the brain waves in my head. There's a joke in here somewhere. I just can't think of what it is. Must have my head up my...

Yesterday I had blood drawn to rule out Lyme Disease as a hitch hiker on my CRaPS. Which some people call Lime Disease. Which reminds me of sucking on a lemon, and much more appropriate for this condition.

So. Ketamine yes. Brain scan maybe. Spinal tap is not just a movie anymore.

Spirits are good. Doctors are on it. And Don is home each night to hold me close. And every morning to kiss me good-bye. Which is really all I ever really hoped for in the end.

The Hole

Today my mother and her boyfriend Ron surprised me with a lobster boil for lunch. A bit of magic sprinkled over a very difficult week. And it's only Tuesday.

I was seen by a neurologist yesterday to rule out ALS. The life expectancy once diagnosed with ALS is an average of three to five years.Needless to say, many thoughts went through our minds. She looked in our eyes and said matter of factly that I do not have ALS. My EMG was negative. We burst into applause. Don holding me in his arms as tears streamed down our cheeks. We immediately crossed to my doctor's office to share with him our news. My doctor paused rather than offer applaud. Our bubble was popped.

Evidently, there is no one test for ALS. It is diagnosed by what it is not. So you must rule out the universe before naming a hole so black it never ends for those you leave.

So why do I still feel as though I am floating above the ground? It is as though processing the fears of a terminal illness, was exactly what we needed. When faced with a serious disease, your mind can't help but seek out the darkest thoughts that curl up in the corner of your mind. But being able to process these feelings - together - was the most therapeutic experience of our marriage and our lives. Not that I want to relive Sunday night ever again. When Don held me so close I felt his heart beat inside my chest.

We are not quite out of the woods. CRPS is enough for anyone's lifetime. But at least now we are on our way. We are ruling out diseases that, like ALS, could be causing my paralysis to spread. CRPS alone can cause immobility, but is hardly ever this severe.

I am in a much stronger place than I was. Because now I know what it is like to be afraid of death. To shed tears with the love of my life because it is a love too soon to leave. I know what it is like to imagine my daughter's wedding with an empty chair. For me.

So for now my days are filled with hope because the neurologist said no.
We are scheduling a spinal tap to compliment my buffet of tests. And my new titanium chair arrived today. I am celebrating the movement I have left. So I can applaud the demise of any other black hole that mimics ALS.

Life is blessed.

Trail Mix

I don't know what it is, but all I want to eat lately is eat trail mix. Evidently there are many different kinds of trail mix. That's why they call it mix. It's the trail thing that confuses me. I understand finding nuts along a trail. You've got to be crazy to want to walk up the side of a mountain. But when did the miniature vanilla kisses come in to play? Dried cranberries. Ok. A bush died from global warming leaving berries that resemble shriveled, dried-up testicles. Ripe for the picking. But cashews? The rich man's nut. Does not belong in the crazy man's bag of tricks. And walnuts only belong in brownies.

So I lay here at two in the morning. Unable to sleep - thinking about what today will bring and gorging on food as confused as I. Then it happens. My fingers tussle through the individual one-portion Trader Joe's bag of mix for a miniature vanilla kiss to go with my very last nut. But the kisses are gone. I must eat the nut alone. Or with a testicle. But I am sick of testicles. I've been eating them all night. I want the sweetness of the kiss.

Five little one-serving bags are scattered on my stomach as I lay in bed. Expiration dates are "Best By February 2014". And I wonder - what will my expiration date be? When will my deterioration end? Will I end up with testicles too?

Today I meet with the neurologist to find out if I have a disease I will have to explain to small ears. Yet I wonder why I cannot sleep. That alone would befit a nut.

I Google "insomnia". Probably the most searched word on the internet. I mean, who would Google "asleep". That would be weird.

So I Google "asleep":

a·sleep (-slp)
adj.
1. In a state of sleep; sleeping.
2.
a. Inactive; dormant.
b. Indifferent: politicians who are asleep to the needs of their constituents.
3. Numb, especially from reduced circulation of blood to a limb: My leg is asleep.
4. Dead.

Dead?! Really? Number 4. Did you have to go and put that in there? I deeply protest the insertion of Dead as a adjective for asleep. Especially for people who can't sleep because they might find out the next day if they soon might be dead.

It continues:

adv.
1. In or into a state of sleep.
2. In or into a state of apathy or indifference.
3. Into a state of numbness.
4. Into the sleep of the dead.

Really! Number 4. Again. In the sleep of the dead. Now they are messing with me. I know it. The sleep AND the dead thing together. Couldn't they just stop at numbness and leave it at that?

I would have preferred they simply stuck with number one. In the state of sleeping. Which is what I wish I was. Like my husband next to me. Numb to what tomorrow may bring.

But back to the nuts. I'm out of them. Except for the shell of what is left of me. Searching in this night for something sweet - to remove the bitter taste of night. Before the sun comes up and the day begins when I discover where this journey may lead. Along a trail. With berries. That once tasted so very, very sweet.