The man in the moon is really getting on my nerves.
I mean that literally-REALLY GETTING ON MY NERVES.
I'm 5 mths post op for Chiari decompression/arachnoid cyst fenestration.
I've had no VERTIGO since pre-op.
A little dizzy, motion-sickness daily-but nothing I can't deal with.
This week...it's been Spin City (without Michael J. Fox).
Many are blaming in on the Super Moon.
The gravitational pull causes changes in tide, exacerbation of crime, babies to be born and now..an increase in symptoms of those with Chiari Malformation Type 1.
I hesitated to blame this on the moon.
I hesitated to blame this on the heat (I'm in hot, hot, hot Texas).
I suppose I would rather blame these two culprits rather than blaming Chiari itself.
Like an unwanted admirer, Chiari hangs around, shows up at the oddest places and at the damnedest times. (I had this admirer in high school that I kept saying "NO!" to, "No!" to dates, "No!" to giving him my phone number, "NO! NO! NO!" He would not take "NO!" for an answer. He even showed up at my house on Valentine's Day-with a puppy-(which we kept for years as a cherished family pet, but that doesn't matter here)- when I was waiting on my real dream date to show up--
AAAARRRGGGHHHH!! What kind of timing is that??? I mean, ..Couldn't he get the picture? "NO" really means.."Go AWAY!!!"?
So this morning, I said aloud to Chiari.."While I appreciate that you want to be such a big part of my life, I think we need to take a break-so we can both really evaluate this relationship...How about I get back to you in about, oh....50 years...?"
As usual, Chiari said nothing.
I've noticed in the past few weeks, laughing with dinner guests, or really any laughing..I get dizzy.
But not the spinning. The spinning is the worst.
The headaches--yes, they are annoying.
Waking up with my limbs asleep and tingling--annoying.
Tinnitus and intermittent hearing loss..annoying.
Spinning makes me not want to drive.
Spinning makes me not want to go for a walk.
Spinning is ruining my day..every day for the last week.
So I guess I'm just saying..to the man in the moon.. to mother nature..
to the "Chiari-whisperer"... to whoever may be in control of this (because I'm certainly not in control of it!)--
Can you just stop this carousel? I want to get off.
I was enjoying the "No Spin Zone" (borrowed that from O'Reilly) and I'd like to go back there.
If the Man in the Moon is the culprit-I'm ready for the Super Moon to orbit its way out of my atmosphere.
If the heat is causing my increased spinning..then I'm basically in for a long haul, summer has only just begun here in my beloved Texas.
Oh--why didn't I think of this sooner? Excessive centrifugal forces from the White House could be causing my problem. There are so many "spins" going on there, the atmosphere HAS to be affected!
So, I suppose I better settle in and hunker down, arm myself with valium, meclizine, a frosty beverage and a copy of the constitution, because if Wikipedia is correct--there's no end to any of these great forces wielding their power over me any time soon.
Friday, June 14, 2013
Resounding in my head are those same familiar words, “You are so brave.”
I feel the doctor’s hand on my arm. An oxygen mask is being placed over my face, muffling the voices in the room. I see the doctor’s lips moving and the syringe, milky white with medicine, poised over the IV port on my left hand. I pray a quick prayer for my children. Again, I hear the words, “You are so brave.”
The sound snatches me back to reality. Ugh, what horrible aching in the back of my head.
Darkness fills the room, a face is nearby. I hear words. Muffled words I don’t recognize. Damn my head hurts. I try to speak, unable to make my voice come out. Tears roll down my cheeks, yet I can’t move my arms to wipe them away. I can’t move my neck to either side, so they puddle there, beneath the oxygen mask. I hear the words again in my head, “You are so brave.”
Now, five months later, watching a news report about a “brave” little girl who just received a double lung transplant, the report says the ominous words, “She is so brave.” Immediately, I take issue with the comment, my suppressed rage surfacing. At the television screen I blurt the words, “No she isn’t! She didn’t have a choice! That is not bravery! That is necessity! That is survival!”
I quickly Google the ominous word. Dictionary.com gives me the following definition: Bravery: 1. “possessing or exhibiting courage or courageous endurance”. Upon reading this, I cross-reference courage: “the quality of mind or spirit that enables a person to face difficulty, danger, pain, etc., without fear; bravery”. Aha! I’m right…!
Don’t get me wrong. I am not minimizing the tragic life of this little girl. In no way do I wish to minimize her struggle or her resilient story. My issue is more personal. My issue is rooted in my own experience. Earlier this year, I had brain surgery. Last year, I was diagnosed with a rare brain disorder, Chiari Malformation Type 1. Within ten minutes of getting the diagnosis, the wonderful world wide web had secured in my mind the scary reality that I faced brain surgery.
The weeks and months that followed are a blur of doctors’ appointments, MRI’s, lumbar punctures, dizzy spells and headaches. There were also many comments or referrals to my courage, to my bravery. People actually commented on how “strong” I was. I remember thinking, “Really?” All the while, I just forced a smile on my face, saying nothing to these comments.
People need a way to comfort others. I understand this. I know they meant no harm. I may seem callous or cold for taking this stance against the misuse of the word “bravery”. My intention is not to be argumentative. My intention is to give bravery, and those worthy of the label their due respect. Bravery is a young boy joining the U. S. Army, choosing the Infantry, knowing he will be sent to Afghanistan to face possible death. Bravery is a firefighter charging into a burning building to save a stranger. Bravery is a regular person stopping a robbery. Bravery is a son standing up to his father saying, “You will not hurt my mother any longer.”
Double lung transplants, brain surgeries and chemo treatments…these are not the makers of brave people. These ordeals, events, illnesses…these breed survivors, survivors with no choice other than to press forward, to work the plan, to give in to the process. Many, possibly all, having no interest in becoming another lab rat of the medical community or their names added to the prayer list of every local church, or fundraisers held in their honor. No option was given to not participate. Participation was thrust upon them.
Call me a fighter, call me a survivor, or call me a winner. I’ll even take the label of resilient or long suffering. Just please, I beg of you, when it comes to my weird brain thing-don’t call me brave.
Bravery doesn’t cry in the night while the rest of the world sleeps. Bravery doesn’t snivel and cower its head, apologizing for being such a burden on others. Bravery doesn’t scream, “Get me out of this MRI machine, I can’t take it anymore”. Bravery isn’t lost on the unwilling, unconscious choices of victims.
Bravery does face a jury and say, “He raped me.” Bravery does lead police officers into bad neighborhoods to rescue the innocent. Bravery does risk everything to escape from an abusive husband. These things bravery is made of. Bravery combats fear, and beats it to a bloody pulp.
Have I been brave? Oh yes, I know I have. I have brave moments no one will ever see. Moments I know I showed courage. I just submit that facing, undergoing and surviving brain surgery was not the work of my bravado. Having Chiari was not my choice. I am not brave in that respect.
Sometimes I’m ashamed of my weakness. Chiari weakened my spirit. I felt it, but could not stop it. I felt my self-worth, self-esteem and self-respect slowly drifting away from me. I gave in to the process of surgery, healing and recovery. I became victimized and depressed. I felt alone and abandoned. I felt anything but brave.
Now, five months into recovery, as health and normalcy slowly return, I am repulsed by my previous weakness, my sadness, my despair. I’m embarrassed by the tears I shed and the time I wasted being angry with my body for being so flawed. In my mind the words of many people reverberate, “You are so brave.” I think of this and I just want to throw up. “If they only knew,” I think, “If they only knew”
This obvious lack of control, lack of bravery, lack of courage has spurred me on. Propelled into a realm of wanting to live up to the brand, I want to be brave. Visibly brave. Undeniably, courageously brave. Not just a survivor of life. At the end of my life I don’t want to get a participation ribbon with the rest of my team. I want to be deemed a worthy contender. I want to win first place. Okay, I’ll settle for being in the top three.
What brave thing can I do? I am a middle –aged grandmother living in Central Texas. I’m a registered nurse, but I checked and I’m too old to join the military. Besides, with my medical history, I’d never get in.
Awake in the middle of the night, I’m looking at my new husband. Bravery exudes from him He is a total Boy Scout. His resume boasts military service, commercial airline pilot, former FFDO (Federal Flight Deck Officer), production test pilot. He is proficient with a firearm, or with any firearm for that matter. I starkly compare myself with him. I’m a sniveling victim of a brain disorder. I possess a permit to carry a concealed weapon, but secretly hope he will be with me should I ever need to use it. He is brave. I am not. I am scared to be brave. I am afraid to choose bravery. I am anything but fearless.
Then, I make a decision.
The next morning I approach the topic with him. I want to become a pilot. We’ve talked about this before, but I had little resolve or real intent. I mean, my gosh. Flying scared the hell out of me. I pray every time I take off on a commercial flight, with every bump of turbulence and with every landing. I realize this is a choice. I realize in order to do this I must be brave. I’m not running into a burning building…but this is my own brand of bravery, mastering my will, conquering my fear.
A plan evolves. Once I am flying independently, I will make a cross –country flight to raise awareness of my disorder. Zipper Flight (the scars of Chiari decompression surgery resemble zippers in the back of the head) will be the name of this journey. I will be brave for not only myself, but for every person fighting this disorder and for the countless lives lost in the battle. Completion of this will deem me “brave”. I now crave braveness like once craved chocolate.
On the morning of my first flight lesson, I’m shaking in my boots. I stand in the office of the flight school with my headset, log book and flight bag. I know there is no way I’m getting in that airplane. Not today…not ever. My instructor is running late. I look out over the ramp. I feel nauseous. What was I thinking? I’m not this person, I’m not brave. I’m okay with being a victim, really, I am. Then I get a text from a friend that just had Chiari surgery. Chiari is destroying her life. She’s losing her job, her health insurance, facing second brain surgery. She’s thanking me for what I’m doing to raise awareness. Damn it! I take a few deep breaths, go to the ladies room and splash water on my face. I look in the mirror. I find some resolve. I scrape together a few bits of courage, squelch down the fear and head back out.
Next thing I know I’m on the ramp next to the plane. My instructor is talking. My husband is there to cheer me on. I want to run. I make a choice. I get in the plane. I put on my headset. I fly.
I did it. I won. I know upon landing I never want to be that afraid again. I also know that if I am that afraid, I can conquer it. I tremble for the most part of the day. My fear almost won. I keep thinking I may have made a mistake, I may not be able to fly. It’s too freaking scary. I re-live the moments of the lesson: getting into the plane, turbulence, feeling sick, feeling trapped, wanting to get out, knowing I’m trapped in that little plane, the beauty of being up there, the magic of flight, how blessed I am to be able to do this…
Then I do something brave, I ask my husband to schedule my next lesson. He did. The next lesson was not as scary, though I still had to coerce myself into the plane and had scary times with the controls. But, I was brave. I chose to face fear. I’m proud of myself.
My lessons will continue, as will my recovery. I will bravely pursue flying and I will give in to the process of Chiari. I may even send a note of encouragement to the little girl with the double lung transplant. I won’t say she’s a brave little girl. I’ll say I hope she feels better soon. I’ll say I’m sorry she has been so sick. I’ll say I know the IV’s hurt and that the medicine tastes bad. I’ll say I want it to not be so hard. I’ll say I know what it’s like to feel bad every single day.
But brave, brave I will not say.
I won’t say it because she isn’t being brave. She is surviving, I refuse to insult her or diminish her struggle for life, her struggle just to breathe.
I will say that one day she will be well. One day she will have the choice of living in fear or showing courage. I will tell her when this day comes, to be brave. I hope she will understand.
A still, small voice inside of me says that she will.
Tuesday, June 11, 2013
Guest Blog today from my friend, Mitchel Grace.
Mitchel is an aspiring writer from Mississippi. From his keyboard he pounded out his thoughts on fear and shared them with me this morning.
by Mitchel Grace
Fear is a subject that a lot of people don’t understand. Some people treat it as a defect in our emotions, and others treat it as a normal human emotion that keeps us from doing things we shouldn’t. Is it normal? It certainly seems that it is. Everywhere you look, someone somewhere is afraid of something. Is it healthy, though? I would say yes and no. We naturally fear death or losing the people we love. My friend, Michele Collum, has a rare disease called Chiari Malformation, and that is very scary. In truth, I knew almost nothing about this disease until I heard about her situation. This disease is something that someone should fear if they have it. Cancer is another disease that we should fear. Why do we fear these diseases, though? We fear them because they could take us away from the people we love. If we don’t beat these diseases, we’ll never have another opportunity to love our families or experience anything on this earth again. That fear is normal, and it’s healthy. We should always strive to live against all odds.
Here’s a thought I have concerning that, though. How many of us are actually living before we find out we’re living on borrowed time? We all talk about all the things we’re going to do in the future, then one day we wake up and realize there isn’t enough time to do those things anymore. We wasted our time being conservative and safe. Look where that gets us, though. We all leave this world with regrets, but most of them are because we didn’t do what we should have done.
I’m still a young man, but I can honestly say that I let fear defeat me for twenty-four years. If I wanted to do something, I thought about everything that could be wrong with it until I talked myself out of it. I never talked to that girl who was supposedly a little out of my league, and I never truly expressed my own opinions. After all, my opinions were different than every other person around me. While other men in my area were obsessed with things like hunting, fishing, and cars, I was more into writing and music. I felt alone, and I was afraid that by stepping out of line and simply being who I was, I would be rejected. Last year that changed. I had always wanted to go to Europe. I wanted to go to Italy and to France. The cost was pretty astronomical because there were a lot of things I wanted to do there, and I was bringing two other people with me. I feared that somehow this experience would fall short of my expectations and I would be left with far less money and no experience to show for it. Was Europe overrated? Yes, not everything was like I thought it would be. Did I still have a unique experience that was truly needed at that point in my life? You better believe I did.'
I didn’t stop there, however. I had always wanted to write a book. I lacked the confidence to do it in the past, but little by little I was gaining that confidence. After you’ve survived the Roman traffic with a crazy taxi driver you can do anything, I told myself. I started writing, but every time I did, something got in the way. I would write a chapter, and then fear would set in. I would think things like: Is this what people want to read? What are they going to say when they see this garbage? For some reason I just knew that what I was doing was going to be rejected by the people around me. I’m still afraid of that. When January rolled around, I had absolutely no writing material. I had literally erased everything I had ever written. That’s when I made a decision. I was going to start doing things the way I wanted to do them. So what if someone laughed at my story? So what if someone might think that they could write a better story? The fact is that very few people actually write a book. If I was going to do this I had to conquer my fear. I wrote five to seven thousand words every day, and I refused to edit one word of it until I had finished my first book. It was raw, and in some places it might have even been a little ugly, but it was mine. I was proud, and more importantly, I was confident in what I had done. I continued writing because it was what I had always loved to do.
Then came the hard part. I started letting people know what I was doing and even let some people read what I had written. At first it was hard, but now it’s easy. The same principle works with everything else. I have read that Michele is learning to fly. For many people this is a very unnerving process, but it’s all worth it when we push ourselves to the limits of fear. It makes us stronger, and most importantly it makes us check off something on our list before the clock runs out.
So in closing, the only things we should really fear are losing the ability to make more moments and stretching ourselves to our limits. Stretch yourself to those limits, and remember one thing. You’ll never get another chance to live this day. Love like there could be no tomorrow, and just as importantly, fear and overcome that fear because you may wake up one day with a real reason to fear. We’re living on borrowed time, people. Learn to enjoy that time, and yes, I mean that you should even learn to enjoy the challenge and accomplishment of overcoming your own fear.
Monday, June 10, 2013
Excerpt from my flying blog...Flying 5 mths post op......
Flying The Symphony
Flying The Symphony
Waco Flying Service's Symphony
So--Lesson #2--Much more eventful than Lesson 1.
So I mustered up all of my strength for my lesson this past Thursday--
Bob and I practiced Flight Simulator at home, where I crashed many, many times.
So I was a bit fearful of getting back in a plane.
Being really fearful made me decide it was the perfect time to actually get back in, before the fear became insurmountable.
So, there I am, Wednesday night--ready.
Flight bag packed, clothes, sunglasses and cap laid out for the early lesson.
Flight bag packed, clothes, sunglasses and cap laid out for the early lesson.
Then Aaron texts saying we have to reschedule, a problem with the plane.
PROBLEM WITH THE PLANE???
This resounds in my head as I calmly look at Bob and say, "What about Friday?"
Within a few minutes, texts are relayed and I'm all set up..
Friday Morning, 0800, I face off with the Symphony.
Last thought before going to bed that night, you guessed it:
"problem with the plane??!"
What I found though, was this extra 24 hours proved to be a blessing, during that time, I relaxed..I went to PT, Neil worked on the muscles in my neck that tend to spasm and add to my motion sick feeling, and I showed up Friday morning feeling really relaxed and ready to face the task at hand.
First, we go into the conference room to do a little ground education.
I learn all about thrust, pitch, lift, drag and the angle of attack.
Now, a great deal of this I've heard many times from my sweet husband. I also know, and somewhat remember Aaron (whom will be receiving a new name for the purpose of this blog...because Aaron just sounds like a really nice person's name...which he is until someone panics and powers up instead of down and is heading the airplane in the direction of fuel tanks--I'm just saying.-Oh..he needs a Jekyll and Hyde kind of name, because that's kind of the transition he makes...I will ponder this..hmmmm.)- anyway--
I remember Aaron going over this with me on Lesson Day 1..how the air molecules split up at the front of the wing and the top air molecule has to go faster to the back of the wing so they can meet up and "hold hands again". I learn what camber is and all about Bernoulli's Principle.
After I was given way more information than I could process, we proceeded out to the ramp to go over the pre-flight checklists. This consisted of me learning the entire anatomy of the airplane.
I was back in A & P I in college, and wishing I had a fill-in-the-blank diagram like we used when learning about the muscular system of the cat.
But no, it's a point and learn..and I may have retained most of it. Pitot tubes, breaks, flaps, various lights, fuel siphons, fuel tanks, kicking the tires and checking the oil.
Then the time came to once again, gather my bravado and climb into the cockpit. More pre-flight checklists..I mean..how do people make mistakes if they go by these very detailed checklists every time?..Perhaps they skip a step or two.
Anyway, I climb in, don my headset and off we go on another adventure. Because my instructor doesn't believe in "babying" new pilots...I taxi to the runway. My biggest challenge is eye-hand coordination, getting the feel of the rudders, the brakes and the stick.
With verbal assistance, I lift the airplane in take-off and the next thing I know--we are flying.
I felt much more at ease in the Symphony. I'm not sure if it's the closed cockpit, or the side-by-side seating, or the motion sickness medicine I took beforehand, but whatever it is, today is better than my last time up.
I get into a little trouble with my instructor because he wants me to fly visually, and I keep cheating with the instruments. I used the attitude indicator a lot.
I need to learn to trust myself with eyeballing the horizon and where the my airplane's position is in relation to what I see. I fully expect to have my gauges totally covered on my next lesson.
We did a maneuver where we flew over the runway, at about 10 feet over the runway...totally freaked me out. Everything felt very close and scary. I panicked a few times.
I was told this is all normal...I guess it depends on what you call normal.
We finally landed and for some unknown reason, Aaron deemed me capable of taxiing in. I now laugh at his judgement. I had to change from using the stick and the rudders to just the rudders.
For some other unknown reason, he thought it was helpful to keep saying, "that sticks not gonna help you, use the rudders"...OBVIOUSLY..AARON...I CAN'T THINK RIGHT NOW...!!! BARKING AT ME ISN'T GOING TO HELP!!
So I swerved and sped up at the wrong times, headed straight for a bunch of fuel tanks, totally missed the parking spot he told me to aim for.
Now let me say that after the low-over-the-runway-flying thing...I was DONE...my body, coordination, everything was just DONE. I thought one thing and my body seemed to do the opposite. However, I managed to comply and finally parked the plane.
My parking spot.
True to form, upon taxiing in, I see Bob out on the ramp with his camera. He snapped a few photos and welcomed me back to the real world.
Me, turning off the controls, doing the post flight checklist with Aaron.
Here I am with my tongue hung out, totally whipped.
So, all in all--I finally feel like I could possibly be capable of mastering this. One thing Aaron kept telling me is, "You are in charge. You make the airplane do what you want it to do."
I feel better knowing I'm in the company of many others that struggled with the controls and the panic issue. I don't think I was altogether wonderful--yet, I don't think I was altogether horrible either.
I left with greater resolve than I showed up with. I know I have a great deal to learn and honestly, many aspects of piloting a plane still scare the hell out of me..but I can see that with this is something I can learn. I just have to be determined, focused and disciplined.
So now, I guess I should learn how to be determined, focused and disciplined.
This is not an activity for the weak-willed or faint of heart.
And in my eyes, it makes my husband even more of a super hero.
To think he has done this as a profession--not just responsible for himself, but for a crew and an airplane full of passengers. Oh to be that confident and certain of my abilities!
Thanks Honey for the inspiration!
Thanks Aaron for the instruction!
Thanks to my lifelong friend (and sometimes foe), Chiari Malformation Type 1--that has pushed me to not accept life with limitations, spurring me on to master my fears and
to live life to the fullest.
"The brave may not live forever - but the cautious do not live at all!"
~ Sir Richard Branson
~ Sir Richard Branson
Posted 13 minutes ago by Michele Robinson Collum, RN BSN