Friday, February 27, 2009

The Story Adam Has Been Waiting For

(continued from "Behind the Smile")

When my Pastor, Bill, first recommended that I write a book about my life and become a public speaker, I was intrigued by the idea. I’d been looking to get out of the eight-to-five lifestyle for a long time. And although I am not happy about being on disability right now, it does offer me the opportunity to take on such a venture.

In the beginning I agonized – boy did I agonize! Where to start? Where to start? I had no idea. “Start anywhere” people would tell me, but that left far too many options. And I had no intention of starting from “My name is Alicia Messinger and I was born on January 31st, 1983….”

I looked to my husband for an answer and he suggested telling about how I learned how to walk again after my surgery. I told him I didn’t think anyone would be interested (of course I didn’t think anyone would be interested in any of my stories and I’ve been proven wrong daily). But he replied firmly “I want to hear about how you learned how to walk”.

So here we are, baby, 14 blog entries later. The rest of this entry is dedicated to you, Adam, for seeing something in me that I don’t see in myself.

As you may have noticed in the pictures I posted in my last blog entry, when it became apparent that I wasn't going home any time soon I was moved into one of the two actual rooms in the MSICU. But before that I was with the other patients, each bed only separated by curtains.

Now it is a complete myth that the hospital is a place for rest. Healing requires work. So despite the fact that I had just had major surgery, and despite the fact that I was still on heavy medication, and despite the fact that I was having lung complications, they couldn't let me just "lay around". It was time to get moving. Your muscles - use them or lose them!

It is also said that "A journey of a thousand miles begins with a single step." Well my saying would be "Before you can walk, you have to stand."

One day they came (I say "they" because I don't remember exactly who it was. Probably a physical therapist) and strapped me down to my bed. I remember the large strap across my legs with a giant buckle. Slowly, they began to tilt my bed upwards towards a standing position. The whole bed - it was crazy! On the side of the bed there was a device that told them how many degrees they were lifting me.

My legs felt weak, like noodles underneath me. I did not trust them or the strap over my legs to stop me from falling. With every degree I had to use more and more effort to support my own weight. They kept encouraging me to go a little further. "Just a little more, Alicia," they'd say. I became worried, asking them how much longer? When could I lay back down?

Finally they lowered the bed back down. I was relieved. They told me I did a good job.

This repeated every day. They tilted it a little more, then a little more. Once I was moved into the actual room I had a T.V. with some cable channels on it. The deal became "Stand fully upright for one half-hour while you watch the Fresh Prince of Bel-Air".

There I'd stand, strapped to my bed like Hannibal Lector (including my bi-pap face mask) watching the Fresh Prince. Counting the minutes until I could lie down again.

"In West Philadelphia, born and raised..."

(to be continued...)

Wednesday, February 25, 2009

Behind the Smile

(continued from "All the King's Horses")

When I was in high school one of my biggest heroes was Charlie Chaplin. Although he was a man of questionable morals, what I loved about him was that he was a "jack-of-all-trades" in the entertainment industry. He wrote, directed, and even composed music for most of the movies he starred in. One song that he is credited for composing is the famous song "Smile" from the movie Modern Times.

Long after the hospital experience I have been sharing with you was over, I found myself on an orange couch in front of a nice therapist named Paula. I started visiting her my junior year of high school and in one of our sessions I brought up some of these stories. I brought them up how I always bring them up - in an oddly casual fashion. I can see now that I had and still have a great disconnect in regards to this time period - a defense mechanism I am sure. I told her that for some reason I had a real desire to share these stories with people, but that no one seemed to want to listen for very long. I could tell it made them uncomfortable and I don't like people to feel uncomfortable. So I'd tell a little bit and then stop.

Now anyone who knows me well knows that the way I process through my emotions is by talking. So now that I think about it, it's really not surprising that I have unresolved feelings about my medical experiences if I have not, until now, really shared them with anyone. Once again I am crying. I am just so thankful for you, my faithful readers. Thank you so much for caring about me and my story. Many people have told me that they've learned a lot about me through my blog. But the truth is I've learned a lot about me through this blog. And I just wanted to take a moment to say thank you for helping me through this healing experience.

So I told Paula that I had some videos of me in the hospital that no one else had the desire to watch with me. I was so happy when she said she wanted to watch them. I brought them on my next visit and between sessions she watched them both. As we discussed what she had seen, she offered me her biggest observation: I was always smiling.

The pictures above are of the various devices that were used in the attempt to reinflate my lungs. The first being a tube up my nose. The second an oxygen misting device. The third is a bi-pap, providing positive pressure to my lungs. And last, the iron lung - something straight out of a sci-fi story. But no matter what I was dealing with; no matter if I was uncomfortable, hurting, scared; if a nurse, respiratory therapist, physical therapist, family member or anyone with a camera said, "Smile, Alicia!" I did. I would turn off all other feelings and smile. I remember one RT who would always say "Where's that beautiful smile?" and I'd deliver every time.

They tried to keep me happy all the time. And why wouldn't they? Who wants to see a little girl sad or in pain? But never once do I remember anyone asking me how I was feeling. How I was dealing with everything that was happening. During my most recent hospital stay I had a chaplain visit me almost every day to help me sort through things. Where was my chaplain then? Where was Paula then? Instead I had stuffed animals, a TV with VCR, a few cable channels, a couple cassette tapes - pacifiers for a big baby.

Anything to avoid the pain and anxiety.

But, heck, if someone had bothered to ask me how I was doing I probably would have said I was okay. I probably would have shut down and told them what I knew they wanted to hear.

And then I would have smiled.

SMILE by Charlie Chaplain

tho'your heart is aching,
Even though it's breaking,
When there are clouds in the sky- You'll get by,
If you
Smile through your fear and sorrow,
Smile and maybe tomorrow
You'll see the sun come shining through- For you.
Light up your face with gladness,
Hide ev'ry trace of sadness,
Altho' a tear may be ever so near,
That's the time you must keep on trying,
Smile- What's the use of crying,
You'll find that life is still worthwhile,
If you just smile.

(to be continued)

Monday, February 23, 2009

All the King's Horses

(continued from “Rude Awakenings”)

"Humpty Dumpty sat on a wall,
Humpty Dumpty had a great fall..."

My lung collapsed. And while I can explain to you the physical repercussions, which were life-threatening, there was something scarier about it to me.

My doctors; the professionals with the answers and the plans; the ones I trusted to the point of allowing them to cut my entire body open like a fish; the ones I allowed to fuse metal rods to my spine, a procedure that could have led to paralysis or death. These great men that I loved and trusted – how could it be that they of all people would now have no definite answers for me?

Aren’t doctors supposed to know everything? Isn’t that their job?

And aren’t parents supposed to be able to tell you that everything is going to be okay?

Wasn’t I supposed to only be here for 4 to 6 weeks? I remember them saying I was going to have a surgery. I remember them saying how long I’d be in the hospital. But when were they going to tell me what happens afterwards? When was I going to wake up from this nightmare? When was everything going to go back to how it was before I ever came to this crazy hospital? When was I going to be normal again?

I was so naive. “When was I going to be normal again?” What a stupid question. It just shows how little I understood about what was going on.

And you know what’s really pathetic? I’m crying right now as I write this, because I haven’t learned a thing in all these years. I’m still waiting to “return to normal”. Every year that goes by I have to face a new reality – a new machine to sleep with, oxygen 24/7, and now for the second time in my life, a tracheotomy. That means suctioning, new machines, new procedures, new employment goals, new fears about what “attractive” means – it affects everything.

And even though I know, I KNOW, that these are the realities of the deterioration of my condition, I still keep waiting for that day when it all just goes away. I even asked my new lung doctor last week, “Do you think I’ll have a tracheotomy forever?” He laughed and said “No, just until you die.” I was crushed. But why? Why can’t I accept what has happened and is continuing to happen to me?

I think it goes back to that blog I wrote a while back… "It Shouldn't Be Like This..."

But it is. That’s where I am and that’s where I was at all those years ago. It all happened so fast and there I was, facing a new dilemma, and all I wanted to do was go home and go back to school. It felt so far away – like I hadn’t been there in years.

And, to my horror, “All the King’s Horses and All the King’s Men…” didn’t have any idea how to re-inflate my lung again.

(to be continued)

Wednesday, February 11, 2009

Rude Awakenings

(continued from “48 Hours”)

No sooner did I fall asleep than hospital staff of all sorts started waking me up.

First it was who I referred to as the “vampires”. They came for my blood in the early hours of the morning. I’d wake up from a sharp pain penetrating my right wrist. My ART-line wasn’t flowing as easily as it had when it was first inserted. So the vampire would wiggle it and wiggle it until they were able to draw an adequate amount of blood. Half angry, half in tears, I’d beg them to stop. It hurt so badly. But they couldn’t, of course, until they got what they needed. I still have the scars to this day.

Aside from blood taken from my ART-line (a line tapped directly into an artery), I also had regular blood draws. At this stage, vampires would show up 3 times a week or more. I’d open my eyes and see them walking down the hall towards my curtain, plastic carrier in tote, full or their devices of torture. You would think eventually it would become, I don’t know, normal or something; like I would accept this as an unavoidable part of hospital life that really – once it was over – was not a big deal. But instead I would squirm as they approached, cry throughout the process, and immediately dread the next visit.

Next to wake me up were the Respiratory Therapists. I had no concept of what having a “collapsed lung” meant – I don’t even think they told me that I had one at first. They just started randomly waking me up and shoving what I remember as a mask made out of a black leather-like material onto my face. Half-asleep, eyes barely open, I’d follow their instructions to take deep breaths in and out. I’d drift back to sleep during the process, not understanding (or caring about, really) the importance of what they were trying to do. After a few minutes, with a sudden jolt, the RT would sit me upright in my bed and instruct me to cough. Only it was more like “OKAY ALICIA, NOW COUGH!” Head still fuzzy, I’d think “Why are they doing this to me?” They’d yell again “COUGH! COUGH HARD!” I’d give it the best I could. “COME ON ALICIA, COUGH!” I could tell it wasn’t enough. And then they were gone. This repeated throughout the night.

My mom would hold my hand each night until I fell asleep. Her trick to knowing I was fully asleep? She would watch my heart monitor. Once my pulse slowed to around 80 BPM, she knew I was out.

But inevitably I would be woken up or wake up on my own, and no matter what time it was I wanted my mom back right away. I would call the nurse, and ask if she would please get her. The nurse would try and reason with me, “It’s 3 o'clock in the morning, Alicia; you should let your mother sleep.” Sometimes my favorite stuffed animals, or nurses that I really liked could soothe me back to sleep. But I had so much anxiety; most of these nights I would beg and beg until finally they would call up to my mother’s floor. She couldn’t get to me fast enough. Time seemed to stand still until I’d see her, exhausted but never cross. She’d just sit down and take my hand. I’d watch White Christmas. She’d quietly watch my heart monitor.

Thump, thump, thump…thump…thump…….thump…….thump……

(to be continued)

Friday, February 6, 2009

48 Hours

(continued from "A Small Act of Defiance")

It was the beginning of January, shortly after the second half of my spinal fusion. I was slowly emerging from my “controlled coma” and the transition was incredibly hard on me, both mentally and physically. My dream world and reality were at war with each other – it was scary. I remember literally going through withdrawals, thinking and saying some crazy things. I told one nurse, “to just stick your needle in my arm and kill me! I know you can! Just kill me!” I wonder what she must have thought of me.

I couldn’t sleep. I was afraid to sleep, my body wouldn’t let me. I watched movies over and over; mostly White Christmas and Snow White and the Seven Dwarves. Twenty-four hours passed – scene after scene, song after song. As soon as a movie ended I asked them to rewind it and play it again.

I was becoming more aware of the people around me, especially my mom. I never wanted her to leave my side, not even for one moment. I didn’t want her to eat. I didn’t want her to use the restroom. I was terrified and completely self-absorbed.

Now my father was far from perfect, and was often verbally abusive when I was growing up. I followed my mother’s lead, spending many years walking on eggshells around him, watching every word and movement, afraid he would “blow up”. Even today I must fight this tendency, despite knowing that, in most cases, the only power someone has over you is the power you allow them to have. I also have a deeper understanding of where anger comes from, having developed a short-temper of my own. Therefore I have forgiven much of my father’s past behavior. We have a much better relationship, although it’s a relationship that we are still trying to figure out.

Maybe it’s the co-dependency in me speaking, but even as a child I could see him wrestling inside himself when he tried to talk to me or spend time with me. I could feel his disappointment when an activity or conversation didn’t go as he had planned. Unfortunately he would usually outwardly blame me, my mom or, heck, women in general. We were “all the same”. But the fact is, despite his flaws, I hope my father is happy to hear that I’ve always known he loves me and that he was doing his best.

During my stay in the hospital my father continued commuting each night to work in San Francisco. During the day he’d sleep in whatever hospital space was available. He would spend some time with me, stepping outside frequently to smoke a cigarette. My mother quit her job to spend every day (and most nights) caring for me.

But there was one night – my second night of no sleep – that I asked my dad to stay with me. And, to my surprise, he called his work and took the night off. He stayed right at my side as my body waged war against the chemicals inside of me. I hadn’t felt so comforted by him since I was a toddler. That’s actually how old I felt, lying there, watching Snow White and the Seven Dwarves with him. Like a little baby. I’d nod off to sleep, then jerk awake. He’d still be there. I’d ask “How long did I sleep that time?” He’d answer calmly “Just three minutes. Try to go back to sleep…” This continued throughout the night.

Finally, after being awake for 48 hours, I fell asleep, assured by my father’s presence that I would be okay.

(to be continued)

Monday, February 2, 2009

A Small Act of Defiance

(continued from "One Little, Two Little, Three Little Indians")

Last year I went and listened to an amazing speaker named Tom Pomeranz. One of his maxims is "An institution is not a place - it's a state of mind." Pomeranz believes that people who are placed in environments in which they feel powerless will often take control of anything they can. And most of the time, these "acts of defiance" do not make a whole lot of sense to anyone else.

One night I woke up and saw a nurse sitting at the end of my hospital bed. She was silently writing in my chart.

I was wearing a large plastic oxygen mask that blew a cool mist into my face. It was attached by an elastic band and the long hose extended off the side of my bed. In my own act of defiance I took off the mask and threw it to the ground. The nurse got up and put it back on.

She sat back down and began charting. Again, I grabbed my mask and tossed it aside. She shot me a look. She got up from her chair and attached the mask back in its place, this time scolding me. She warned me not to do it again.

She sat down. I waited a few moments and then tore off the mask and threw it to the floor. But this time she did not budge from her seat. Instead, she continued writing.

I asked “Nurse?” She did not answer.

After a moment I urged again, “Nurse?” No response. I could hear misting in the distance...

I began to panic. My breathing became rapid.

Fear in my voice I repeated, “Nurse?” Without looking up she calmly - but sternly answered, “You’re okay.”

My heart was pounding, increasing as every second ticked by. I was surely going to die from oxygen deprivation!

Oh my gosh...Oh my gosh... I NEED MY OXYGEN!



After a few minutes she got up and gently placed my mask back on my face. My heart rate and breathing instantly returned to normal. My panic attack, of course, had been entirely self-induced. She returned to her chair.

I closed my eyes and breathed in my oxygen.

And, finally, she was able to finish her paperwork in peace.

One Little, Two Little, Three Little Indians...

Also titled: “Stories They’ve Told Me”
(continued from “Alicia in Wonderland”)

Many people have told me, “Your last blog was really weird,” since I wrote it a few days ago. To this my only reply is “Yep – that’s what morphine can do to you!”

As I mentioned several blogs ago, my surgery was performed in two parts; the first on December 22nd and the second on December 29th. My back was cut open from the top of my neck all the way to my hips and also around my right armpit. They had to remove parts of my ribs on my right side. I was intubated (a tube placed down my throat so that I could receive a machine’s assistance to breath), given a G-Tube (a tube in my stomach that they could pump food into) and given an ART-line (An IV in my wrist that connected directly to my artery). During the second surgery they attached metal rods to my spine. Unfortunately, during one of my surgeries, one of my lungs collapsed (filled up with fluid).

The morphine, although frightening in of itself, was intended to shield me from these painful realities of major spinal fusion. I was in what is called “a controlled coma”.

My husband and I are both heavy sleepers in general. People will have entire conversations with us in the middle of the night that we will have absolutely no recollection of the next day. So add medication on top of this and “Good-night Nurse!” Only through pictures, videos, a journal and stories that others have told me do I have any idea of what actually took place while I was in dreamland.

Apparently when I first woke up I was furious with Dr. Fox. He had not told me that I wouldn’t be able to talk, due to the intubation. Not being able to verbally communicate my needs made me extremely frustrated. I think at first Dr. Fox thought of me as “just a child”. But I wasn’t a typical child. I was a child that had to deal with grown-ups and grown-up issues on a regular basis, due to all my medical needs and my extremely co-dependent relationship with my mother. Since then Dr. Fox has always told me how it is – even if it is scary.

At one point I was trying to ask my parents something, and they simply couldn’t understand. I became upset, trying over and over to communicate with them to the point of tears. Finally they handed me my stuffed animal, Lambert. I demonstrated my request and they realized that all along I had only wanted a hug! I was terrified and wanted constant human touch, especially someone to hold my hand. My mother sat at my side for hours every day.

Throughout my entire hospital stay my parents remained at the hospital. We lived over an hour away, so my parents hung their clothes and kept their necessities in the backseat of our car. They slept in various hospital rooms – switching almost daily, as the rooms were needed. My dad, who continued to commute to San Francisco every night, sometimes had to sleep in the dialysis room during the day, if no others were available. We had just purchased a house in Lathrop, CA, but my parents only returned there once or twice during my entire stay, and that was just to prepare for my eventual homecoming.

Christmas passed. New Years passed. Many visitors came. I don’t remember any of it.

Two things that puzzle me and crack me up about this time period was my hallucination about my mother and the nurse wearing “war paint” (refer to the blog “Alicia in Wonderland”) and a story that my mother told me (and I have repeated on a number of occasions because it is so funny to me).

While I was still on some medication, my physical therapist came for our first session. As he approached my bed I yelled out “STAY AWAY FROM ME, YOU INDIAN!” (What was it with me and Indians??). He stopped, shocked by this coming from a harmless looking little girl. My mom laughed and asked me, “Well who are you?” I replied matter-of-factly, “I’M JOHN WAYNE!”

That’s right, don’t mess with the Rooster.