The Bright Light

When I remember that night in November when rapid response came to my hospital room, I always wonder if I experienced death.  (The Night My Heart Broke) When my mom first came into the room and asked what the nurses had given me because I looked so out of it, she knew something was wrong.  I didn't think anything was wrong -- I felt as if I just wanted to go to sleep.  I felt like I hadn't slept in two weeks and just felt an overwhelming need to just crash, right then and there.  Technically, I did crash, but not in the way I was hoping for.

Still hooked up to the crash cart

When E.R doctors and nurses were hooking me up to machines, inserting the quickest I-V I ever received, I still felt like nothing was wrong.  Even when 10 people in my hospital room were begging me to keep my eyes open and repeating, "Natalie!" over and over again, I still felt like nothing was wrong.  I just wanted to fall asleep and everyone was keeping me up.  And when my mother, standing by my bedside, looked at me with fear in her eyes as if that would be the last time she'd ever see me... I looked to her and smiled.

The weirdest, and most morbid, part about the whole thing was remembering how I felt.  I felt at my most peaceful.  I felt happiness.  My life didn't blink before my eyes or anything like that, but I felt like I had accepted everything that's ever happened and I was okay to leave it behind.  Like I did my best and that's fine by me.  During those moments were the most peaceful I had ever felt in my life.  The fact I was only 28 years old didn't cross my mind.  Not ever marrying or having children, or ever seeing myself graduate never crossed my mind.  And if something were to happen to me that night, I would have left this world happy with how I had lived it.  

Me & Mom, July 4, 2011

When the doctors injected that shot of Nitro directly into my I-V, the strangest feeling came over me.  It was the most powerful feeling I have ever felt in my life... almost as if life, literally, was coming into my body all over again.  I felt warmth in my head, to my neck, down to my hands and straight into my legs.  I remember checking to see if I had peed myself, because that is exactly the warm feeling I'm talking about.  (I didn't, by the way)

Me and Fionna

I'm no longer afraid of death after that night.  Well, I'm afraid of being shot or ran over a car -- that kind of death, but I'm talking about a natural death.  And as morbid as this sounds... I don't think I'll ever feel that peaceful again until it's my time to exit this plane of existence.   But I guess that's a good thing when you're in my position and you're health isn't so great.  The only thing that worries me is the effect my death would have on family and friends.

Death is the one great certainty in life.  Some of us will die in ways out of our control, and most of us will be unaware of the moment of death itself.  Still, death and dying well can be approached in a healthy way.  Understanding that people differ in how they think about death and dying, and respecting those differences, can help accept a peaceful death and a healthy manner of dying.

(Quick note:  I'm having an extremely difficult time right now.  Plus I need to start packing during all of this shit.  Thanks for all your well wishes.)

This is my friend Christina. We met at UPenn, getting poked and prodded together. Unfortunately, her cancer was very aggressive and uncontrollable. She passed away in her sleep last night. Rest in peace, gorgeous.

The Night My Heart Broke

I used to write motivational quotes on the board every morning.

I have a story to tell. But there is one I need to talk about first because it was the scariest moment of my life.

My mom was on her way to visit me, so I decided to take a nap. Taking a nap in a hospital is near to impossible. Everyone and their mother come in every 15 minutes; vital signs, doctors, visitors, nurses, EVERYONE! However, it was a Saturday, so I was safe to take a nap for about 2 hours while I waited for my mom to come.

I remember hearing her walk into the room. I tried to wake up but I couldn’t. Feeling very drowsy, I just could not open my eyes. I knew something was wrong, so I pressed the nurse call button.

“What the hell did they give you, Natalie?!” my mom freaked.

I could barely lift my head. My mother ran out of the room. I could hear her screaming for help and I felt like I was slipping away. My heart was beating out of my chest, I was sweating and I almost felt like I was dying. I say “almost” because I obviously never died before.

When you are in the hospital as often as I am, you learn the codes they announce over the loud speaker pretty quickly. Code grey: violence. Code blue: death. Rapid response: pre-code blue. And there was the announcement for me:

“Rapid response to 3 North rehab! Rapid response to 3 North rehab!”

Before I knew it, the crash cart, which is a giant blue cart that helps revive people close to death (like paddles) was in my room. They were setting up an IV in my arm quicker than you can say, “uh-oh”. And 20 people were in the room, all in my face, “Natalie?!” “Natalie are you with us?” “Natalie, do you know where you are?”

“Her heart rate is 168 and rising!”

And black. I don’t remember anything else.

The last thing I remember was my mother’s face on my right; looking at me as if it would be the last time she would see me alive.

Then I felt the strangest feeling… my hands, feet and legs felt hot. At one point, I had to check if I peed myself because my body was so warm. It was the life (or blood) coming back into my body. They had injected something called Nitro. It is given to people going through heart failure. It took a few hours for me to “come to it” but I made it out!

Here are some pictures from that night & day after (in no particular order)…


















Me two days later...

Falling In Love

“Insanity: doing the same thing over and over again and expecting different results.” - Albert Einstein

I guess everyone has his or her own definition for the meaning of life. I also think it differs with age. Hell, when I was just a kid, I just wanted to have fun. Time clicks by, wrinkles start to show, relationships come and go, people you know start to die, friends get married and have children, you become responsible for not only your life, but another. Then the feeling sets in; what is the meaning of it all? I think most of us want the same thing -- happiness.

Probably every psychologist has reasoned that people fear death most. I feel people fear death because the feeling of wasted time, not using your time on Earth wisely, or having regret before death. It could take years for someone to find his or her sense of purpose. I’m lucky enough to have reached it now.

It all started when I started talking, just talking, with other young women with this disease. They didn’t feel so alone anymore. Then, I started volunteering for the MS Society, which led to me doing fund-raising. Eventually, I’m walking or running marathons for MS. It’s not for me… well some of it is. I honestly want some brilliant brain to find the cure so no one else has to endure such an unpredictable disease.

So how did I come to be so unbelievably happy? It’s not like I have the greatest job on the planet, money coming out of my eyeballs, a sweet husband or darling children. Having a boyfriend doesn't equal happiness. Living in a fantastic apartment, nice clothes, or a great job -- it's all on the surface. I started to respect myself. I make goals, no matter how difficult, and I try my best to accomplish them. I left behind relationships that pulled me under and people who I couldn’t be myself around. I realized that I deserve the best. When you are finally at the point of loving yourself for who you are, you will then finally feel that settling is not an option – you deserve the absolute best in life. It doesn’t come wrapped in a box with a bow; it takes time to work at it. Maybe you’ll wake up one morning and feel this way, or maybe you’ll go through a trauma forcing you to face the reality of finding self purpose like I have.

Be happy that you are alive, having the cards in the deck lain out and it is up to you how to play them. Make changes. Improve yourself. Believe nothing is impossible. And most importantly, once you love yourself, start to share that love with others.

In The End, Life Is Stronger Than Death

Went to the doctor today. The reason being was I am having a hard time ingesting food, and I constantly feel as if my gag reflux was checking in some over-time. It was not a neurologist, just my internal medicine doctor. For weeks, I had a horrible case of the hiccups, always choking on food, the thought of eating made me gag even though it smelled delicious and eating has become a chore.

For example, eating hard food felt like it was going down the wrong tube. That is the closest I can compare it to.

It was discomforting (to say the least) to find that my symptoms came back to my MS. I was diagnosed with Dysphagia.

Definition: It seems like swallowing would just be second nature, not something we have to think about in order to do safely. However, swallowing is a complicated process that involves all sorts of muscle coordination and feedback to and from the brain through certain nerves and neural pathways. Multiple sclerosis (MS) can damage any of these nerves as well as the area of the brain responsible for coordinating swallowing, the brain-stem. This can lead to swallowing difficulties, called Dysphagia.

And what does Dyspagia feel like?

- Difficulty chewing

- Coughing while eating or immediately afterwards.

- The need to swallow more than twice.

- Choking sensations.

- Food sticking in the throat.

- Weak, soft voice.

- Feeling that it is hard to swallow food or move it to the back of the mouth.

- Aspiration, meaning food or drink is going down the windpipe into the lungs.

And why I'm in panic mode:

Dysphagia can become so severe that people become dehydrated or malnourished. If the tips for managing swallowing difficulties (such as chewing your food thoroughly and adding thickener to your drinks) don’t work, it may be necessary to use a feeding tube. Aspirated food or liquids can also cause aspiration pneumonia. This is a particularly dangerous lung infection, and it is the number one cause of death in people with MS.

This is what my cousin Johnny passed away from.

My doctor called my neurologist immediately and informed him of my situation. It usually takes a pretty damn long time to get an appointment with a specialist, but in this case, my neurologist made me his first priority on Monday morning.

This could go two ways:

1. I could be admitted into yet another rehab for speech and swallowing therapy. They would want to watch me for the next few days because at the rate I'm losing weight and not eating (or picking at food), the idea of malnutrition was brought up. I would also need a scan and ultrasound of my throat.

2. I could possibly have a nurse come to my home and hook up the IV's again. Also, I would have a therapist come to the home to monitor me.

The thought of going into the hospital does not deter my worry -- the thought of death does.

I Had A Bad Week.

A very close friend of mine passed away. While I was sick, she was one of the very few people that stuck around and I loved her for that. Her funeral was tonight.

While packing up her apartment, her death made me question my life and mortality. Sometimes I get jealous of the people that are able to wake up, be lazy and go hang out at bars without a worry in the world. This was me a few years ago.

I have no idea what will become of me. My health is erratic. The time when I lost sleep over it are long gone, but I don’t ever want to say, “I really wish I did that”.

So I made a deal with myself tonight –

I will try to eliminate “no” from my vocabulary. I’ll make plans, never break them. Have complete and total mind blowing fun, while becoming a family with friends. I will never doubt them. I will catch a bullet for them.

Surprise my parents. They believe my disability will hold me back. I will prove them wrong. I will continue public speaking, kicking college’s ass, and do as much possible charity I can. I will try to help people, inspire people. Prove them wrong.

I will stop giving a shit what people think of me. Their opinion doesn’t matter; it never did. I will do whatever I want, say whatever I want, whenever I want.

When I meet someone, I will not be awkward or sabotage myself because I believe it will fail. I will not worry that I’m different from other girls and my lifestyle with MS makes some things intimidating. I will no longer lie to guys and say, “I have a boyfriend”.

If I fall for someone, I will love him. I will cherish, inspire and care for him. He can do whatever he please and I will support him. I will be his light when there is darkness. I will be his best friend.

And whenever I feel down, I will remember the day I first used a wheelchair and then I’ll look at the success I’ve had and realize maybe things aren’t that bad.

Breathe

Trying to make the best out of living in a rehab facility is like trying to make the best out of a really bad relationship. Three hours of the day were spent in actual therapy, while the others were spent either in your room, or socializing with other patients. What was most interesting about my stay was visibly watching how patients coped with their condition.

For most, I saw all different kinds of courage, both blatant and subtle, but I knew every one of us lived in worry, and anger, about our health and well-being. Some vented through anger, raging against other patients, or staff. For example, there was a man down the hall that would throw his used diapers at nurses, or yell at us patients about anything at all. Others went to God, begging for answers, and hope, praying for the way. Their soul searching was inspiring. Before my MS, I considered myself an Atheist. I was raised in a Catholic family, and went to Catholic school. During my stay at rehab, my faith in God had been restored. I have to admit it’s hard to cope with hard times without any faith; I needed faith in something, a miracle. The rest of the patients showed no initiative at all. They would only utilize therapy when forced, and seemed to fade into the background. The majority of patients grew more depressed as time passed, listless until finally some of them grew so apathetic they would lie all day in bed. I imagined they dreamed of home, or better progress.

I met a woman named Mary, whom I would call “Savior Mary”, that made a huge impact on my positivism in life. Savior Mary was only 56 years old and diagnosed with stage 4 lung cancer.

“Breathe. Live for one more breath. Just that one breath is a miracle, Natalie.”

Just as simple as that, I understood what she was saying. Coming from a woman whose oxygen was coming from a tank, I cherished her advice. My limbs may have been numb, useless, and I was diagnosed with an illness with no cure, but I was able to breathe. I had been a lucky one, and I never viewed it as such. After she had given me her address, phone number, and any other form of contact, I admired her faith in living long enough to be her friend. However, Savior Mary passed away shortly after our friendship had been made.

With all of the problems I was facing, it was hard at times not to think of some patients as cowards. A few were only recovering from knee surgery, and it would anger me when I had spent most my time with the seriously ill. I always wanted to yell, “move your ass!” but I bit my tongue. Perhaps it was all that time we spent together recovering, we felt like a family of survivors. No matter the personal struggle I was going through, I spent as much time socializing as I could. Helping others always had made me feel better about myself, and the little things I had done in rehab were no different. I never abandoned them to their own fates, only tried to restore any kind of faith they had left within them. We suffered each moment in different degrees, and in many ways, but our greatest fear was the actual outcome of our futures out of rehab.

I also felt this way about my real family. Putting on a smile, trying my best to look well, and giving them all the greatest of news, I was coaching my family to become happier. Even though my father had sold off my Mitsubishi Eclipse, I told him I would be driving in no time, even build a little engine on my wheelchair if he wanted.

Above all, we all remained a union of comrades, and family, in our suffering.