My Top 5 Pet Peeves About Having MS

5.  Jumping To Conclusions

     There have been many, many times men have jumped to the conclusion that I cannot bear children.  Even though I'm pretty sure I don't want children in the future (and if I do, I'd probably want to adopt), men think because of my diagnosis, I'm barren.  Fact is, pregnant women with MS are 5 times more likely to be even healthier during their pregnancy.  Not to mention, many jump to the conclusion that MS will render me useless in my old age.  Maybe it will, but the only one who knows for sure is my body.  The most unfortunate case has been being turned down from jobs because of my health (not just MS). 

Although that shit is illegal, it's not exactly something you can prove.

4.  Insults

              I have pretty thick skin.  The only people I honestly care about how and what they feel
          about me is my family.  I've always believed when someone has something pretty bad to say
          about you, it's usually because they see something in you they feel they lack themselves.  Or
          the actual insults and the act of putting you down, lifts them 'up' in some way.

    However, it pisses me off (not really 'hurts') when my disability is used against me in some way.  For example, a few months ago I was called a "gimp".   Or the worst, "you deserve cancer!"  Man, it's just plain evil. 

3.   "But You Don't Look Disabled"

     Even though I have handicapped parking plates on my car, I usually don't park in a handicapped space unless I feel it's necessary.  I know first hand how it is being in a wheelchair (or using a cane/walker) and being unable to park in a handicapped spot when I really needed it.  But when I did park in those spots, there have been times I've been approached with the angry statement, "but you don't look disabled!" 

2.   No Invite

    Sometimes friends won't invite me to certain places because they're afraid it would be too much for me, and my MS, to handle.  Like if a camping trip was being planned, or down to small tasks such as going into a jacuzzi.  

    I'm not a person totally incapable of having fun because I have Multiple Sclerosis.  I can do the same shit you do -- and sometimes -- even better.  So what?  I have MS.  It doesn't mean I sit at home with my thumb up my ass.

1.  Damaged Goods

     My number one pet peeve is being treated as damaged goods. 

I will never forget how one day in rehab, my speech therapist came in for our session while my father was in the room visiting.  My speech therapist, who is paralyzed from a neck injury from the waist down, is permanently in a wheelchair.  My dad was asking her about her disability and her personal life... then seemed shocked to find out she was married.  As soon as my therapist left our session, my dad turns and says, "see!  She can find a man and a good job!  I'm sure you can too!" 

I know he meant well, but it hurt like hell.

The fact is -- I'm proud of myself.  I know it sounds morbid, but I'm kind of thankful I've been through what I've been through.  I wasn't the greatest person in my early 20's (already with health problems, anyway).  Being disabled has jump-started something inside me that I could never fully comprehend or even begin to explain.

I love life.  I have such an appreciation for life and waking up every single day.  And even though things can be shaky (like trying to date or find work suitable for my disability), I still make what's best of it.  What kind of life is it if you're miserable all of the damn time?  I don't want to be that person who hates waking up in the morning.  I don't want to be that person who takes things for granted.  And especially don't want to be that person who doesn't appreciate all the awesome small things life has to offer me.

What It Feels Like To Be Diagnosed With MS

My dad brought me into the E.R. during the afternoon of February 14th, 2006.  The E.R. was packed.  I remember one man's skin was literally melting off after an explosion with his grill.  There was a teenager with his hand wrapped, bandages soaked in blood.  As soon as I walked up to go register myself, I fell right to the floor.  I could feel my legs, but the floor felt like sand and my legs weren't listening to the commands in my head.

"GET A WHEELCHAIR!  HURRY!  GET HER A ROOM!" the nurses said, yelling for help.

 ____________________________________________

 
I was resting in my hospital bed after a long day of being poked and prodded.  I remember the lights were off, but the glow of the television set lit the room.  I wasn't watching t.v., I was waiting for a doctor to come tell me why I couldn't move my legs.  I was wondering why my friends weren't calling.  I wondered what my boyfriend was going to do that night for Valentine's Day.

My neurologist came in and explained to me all of my test results.  Blood tests were negative, negative for STD's, negative for drugs, negative for Lyme Disease, negative for Transverse Myelitis.

"The only option left is Multiple Sclerosis.  You'll have MRI's tomorrow to see if there are any lesions," he explained, holding my hand as I cried in my hospital bed.  I knew what Multiple Sclerosis was, my cousin had it and his MS was so severe.  I had heard stories of how my aunt took him to Mexico for bee stings and snake venom.  Years ago, there barely were any options to help MS, but rumor had it that bee stings and venom could be a possible cure.  My aunt had tried her hardest.  My cousin's MS impacted the family so traumatically, I knew when I would tell my father that I'd have MS, he wouldn't take it so well.

I think I became more worried about telling people about MS than the actual diagnosis itself.

The hospital doctors talked about I-V steroids and rehab -- maybe I'll get better and walk again.  I was in high spirits, but not for long.  In rehab, everyone is on a set schedule.  There was a 7 a.m. wake-up call, 8 a.m. breakfast, 9 a.m. rehab, 11 a.m - 1 p.m. was lunch and resting, 2 p.m was rehab and you were done for the day at 4 p.m., followed by a 5 p.m. dinner.

I got into my wheelchair at 7:30 a.m. to get ready for breakfast.  At that time, I barely knew how to use a wheelchair.  I couldn't push with my legs, so I relied heavily on others to push me around.  And there I was -- in the middle of the rehab hallway by myself, unable to push my wheelchair and no one around to help me.  It was then when I realized how alone I felt, how my diagnosis alienated me from the world I knew.  It was then I realized my diagnosis would change my life forever and the life as I knew it would never be the same.

 ____________________________________________

My friend doing the WalkMS with me last year

When someone is diagnosed with MS, their world is turned upside-down.  First, you have to learn to accept it.  It might take years to accept a diagnosis, but initially, you hear it happening but you never believe it will ever happen to you.  Second, you worry about what your friends and family will think.  You will start to feel like a burden to other people.  You feel like you'll become the "downer" to your friends.  Then when friends call less and less, your fears become realized.  I had spent hours on a computer researching what MS really was and I sunk myself into a world of "what if's".  Will I ever have children?  Will I become a vegetable one day?  Am I going to work again?  Who will want to love someone like me?  Will I ever be happy again like I was?  A diagnosis sounded like the end of the world.  

But a diagnosis doesn't have to be that way.  I tell everyone I talk to from this website the same thing -- I wish I could tell you everything will be coming up daisies, but it won't.  However, MS will change your life in ways you have never imagined.  Even though friends came and go, a new crop of friends will show... friends who will support you no matter what; true friends.  Family bonds will be tightened.  And here's the best part -- your confidence will be stellar.  You are fighting MS -- you can fight anything.  You are the ultimate fighting ninja warrior and you can do it all.  Positivity and determination will take you every where in the world, always remember that.

It's Got Two Wheels, But It's Not A Bike

I've never really talked in-dept about my experience being in a wheelchair.

When I first started using that hell-on-wheels, I thought I was going to get pity (and you know I hate pity).  It was actually quite the opposite:  assholes came shining through, let me tell you.

One time, I was out shopping with my mom.  Shopping was always a hard thing to do.  Think of Target and think of how little the spaces are between the racks -- now imagine fitting a wheelchair between them.  Women would look at me like, "you are in my way".  I remember one woman actually pushed me out of her way -- pushed my chair! 

And I'll never forget one time when I was in CVS.  I was wheelin' my way through, mindin' my own business, when a man looked at... smiled, and said, "you are still very beautiful."  I don't think he knew how good that made me feel.  You don't get many compliments being in a wheelchair.

However, the worst time was when someone took me to the aquarium in Camden, NJ.  At the aquarium, there are spots right in front of the displays just for those who are handicapped.  I would be wheeled right up to the handicapped spot and be surrounded by a million children.  I like kids, but being surrounded by 20 of them gives me hives.  The kids would start touching my wheelchair, which was okay... I understood they were curious little creatures.  But then, the kids would start climbing on my wheelchair to get a better look at the display.  They would put one foot in my wheel and hang onto the back, while their parents would look on in horror but not say anything about it and probably hoping I didn't say anything about it either. 

I get a lot of questions about how I got out of my wheelchair.  In all honesty, I think it comes down to one thing -- determination.  You start to lose the ability to live life while using that thing, but I mustered everything inside me to want to walk again.

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...

Update

I have the best news.

I am going home from rehab... using a cane!

I will post a giant entry Wednesday.  Lots of trouble, happiness, strife, heart ache and a different physical appearance.

Love.

High & Dry

I loved him.



We lived together, but when I look back on it, it feels more like playing house. I felt needed and appreciated. There is no better feeling than feeling needed. I was only in my early twenties and I thought I knew the world by then. It was more than a partnership, more than a relationship and I was happy to put myself on a plate and offer all of myself to him. I didn’t care about getting flowers, or presents or anything like that. I felt like a princess because he gave me the ability love and trust someone more than I ever had in my life. In relationships, I don’t really ask for much. I have more fun with a tickle fight than going to a $40 show. His happiness was my happiness, and along the way, I lost myself. Before I knew it, his friends were my friends, my life was being planned according to his calendar and I followed like any overly loyal girlfriend would have. The only thing I asked for was to not break me. Give me the same respect I give you. Give me the same happiness in the effort I put towards you, into me.



So one night, I lay alone in the hospital after hearing the most devastating news – I was going to be a cripple. It was all right, I thought. I had him and he loved me enough to accept me for who I was. I was absolutely comforted knowing out of everyone in my life, he would be the first person to be at my side.



I never heard from him again. Sure, girls came in and out, using my bed while I was learning to walk again. The apartment was cleaned out before I came home a month later as if he were a ghost. Like he was a figment of my imagination.



I can describe all the cliché things that happen after following a break-up, especially one that cold. How your heart closes, how love is the enemy, and how cold you feel inside, enough to bring on a frost advisory.



No matter how many times I say I am grateful for the things that have happened to me over the last few years, that one incident literally broke me. But I’m a woman, and women need some emotional stuff in their life, right? So many boys came and go. I didn’t sleep with any of them. Sex became so incredibly sacred to me and it felt like I would be giving a piece of myself to this person. I went 4 years without sex. Now, I did kiss, I did flirt and date around. I needed the company. And as awful as it sounds, I needed to feel appreciated. It didn’t matter if I saw no future with the guy; I used them all to hear the things I wanted to hear. I used their hugs, their comfort, late nights and kisses. I literally flirted with disaster. My insides were the aftermath of a war, the destruction of being torn apart and the last thing I wanted was to be built back up again. I was a hollow shell unable to love anyone but myself.



Dear world, this is the most honest and open I have been to so many people at the same time. I have faith again. No matter how much I fight back those feelings I know are there, I can’t fight anymore. I am learning you cannot be happy without risking being completely open. And sometimes, just sometimes and not very often, someone comes along and brings that wall down. As exposed and vulnerable you may feel, realize it is okay to feel. It’s not healthy going down the road I took, especially for so long. Not everyone is out to hurt you. But I can’t lie and say it’s not the scariest feeling in the world. My self-destructive days are now over and it took me this long to realize it does more harm than good.



Broken and rebuilding; I know it will all be worth it.

Fireworks

“You have to hurt in order to know. Fall in order to grow. Lose in order to gain. Because most of life’s lessons are learned in pain.”

Boom – crackle – pop, pop, pop.

Fourth of July celebrations ended a few hours ago, but the sounds of remaining, lonely firecrackers still pop pop.

The 4th of July used to be one of my favorite holidays. For 2 years, I spent it at home with my parents, watching the fireworks on television. The 3rd year, my father felt my need of wanting to see some bright lights. He packed my wheelchair into the back of the SUV, picking me up into the car with strong determination. My father really wanted me to see fireworks. So, he drove, sat in traffic and kept me positive considering we were definitely going to be too late. I did know that, but the fact my father kept that fire of hope going meant so much to me. When we arrived, it would be nearly impossible for us to find handicapped parking, get me in the chair and find a good spot. He was heart-broken. Me? It wasn’t about the fireworks. It never was. My father is my determination. He is a man who has taught me how to keep a fire alive.


This year, I am a 10-minute walk from the Philadelphia Art Museum, so my mother and I decided to take advantage of this and go see fireworks together. We walked with our chairs, held hands and found front row seats. As the first few fireworks were released, booming over our heads, clouding us in a smell of sulfur, I looked over at my mother and she looked happier than she has in a long time. I had one of the best nights of my life with my mother on the museum lawn. Again, it wasn’t about the fireworks. It was about my mother’s ability to appreciate the smallest of things, enjoy life as it happens and have fun. That’s what she has taught me.


We can learn a lot from each other. I’m grateful for every person who has been in my life, for they have taught me something.

Life is all learning and if you don’t pay close attention, you will miss the lesson.

The Key To Change Is To Let Go Of Fear

“For everything you have missed, you have gained something else, and for everything you gain, you lose something else.” -- Ralph Waldo Emerson

I’m staying the night at my parent’s house. Hearing them sleeping, feeling their comfort of having their daughter safe at home brings pleasure like eating a fresh baked cookie.
When I see them, I don’t just see parents, I see my lifeline and my strength in form. I would not be where I am today without them. When all was lost, when all was lonely, my parents were there. And I will return the favor for them. (My mother plans on writing a post for my blog, fyi!)

I don’t feel old – I feel matured. No longer “dating”, I am holding out for someone worth my time. It’s time to settle down and find someone worthy of what I have inside me. I have a lot to give. In easier words; a mature relationship. I no longer feel the need to fit in or mold myself to please others. People come and go, but the few I have are priceless. Friendship is no longer about competition, jealousy or drama. Revenge is no longer about getting someone “back”, but rather letting it go. It does not deserve the effort.

Love has a new feeling, a new definition. Love is absolutely beautiful. There is a world of endless possibility. There is no such thing as a leader, but a partnership. Not even the best scientist in the world could define that deep connection between two people. Seeing my parents is like Christmas morning. Hearing my best friend Monica on the phone always makes my day better.

I also don’t feel disabled. Having been in a wheelchair has given me patience, newfound happiness and a softer landing for being let down. When you are at your lowest of low points, there is no way to go but up. I know I have a disease that has no cure, but life is life and it doesn’t define who I am. Some of the strongest people I’ve had the pleasure to meet have disabilities. They are an amazing group of people – you all are.

10 Men

"Nurses - one of the few blessings of being ill." -- Sara Moss-Wolfe

My stay at Our Lady Of Lourdes was pleasant all due to the nurses.

One woman, G, was a single mother working hard to make ends meet. She was very religious, but the kind who wasn’t pushy and made it very endearing. Comforting my mother every other night, G also sat with me in my room to watch television – her favorite, Dancing With the Stars. In the midst of my stay, G gave me a bracelet. The bracelet has wooden squares each connected on a band. The squares are beautifully painted with religious icons.
“Someone needs to watch over you while we aren’t here, honey.”

The woman who ran the nurse department in rehab was very close with me. Instead of taking breaks in the cafeteria, she would sit in my room with a tray, prop up a chair and watch American Idol. We would talk about my friends, about life, about everything and anything that didn’t have to do with Multiple Sclerosis. She told me that I was such a great patient to have; all of the nurses would try to schedule their shifts to be on my part of the floor.
Though, my favorite was K. She was a free agent from the south, lending a hand at the hospital for a few weeks. The second time into my rehab, it was my darkest and hopeless stay. One night, I wheeled my chair out into the hallway to get “air” and she asked me how I was. Breaking down into tears, I told her God was punishing me, which this was my entire fault for things I’ve done. My family was suffering because of me. My future was up in the air; all I wanted to do was go back to college.

“You prove those doctors wrong, ya hear? I know you got the strength of 10 men in there,” she said as she comforted me at the nurse’s station.
“I want you to go to bed tonight with a dry eye, wake up in the mornin’ and think of all the wonderful things you can do with your life.”

Even though I left the hospital still in a wheelchair, I began planning my future – chair or no chair. I would help others, go back to college, respect my family and stop with the self-loathing.

Happy (belated) nurse appreciation.

UPDATE
This post is now printed out and hanging at the nurses' station. Thanks gals!

The Art Of Letting Go

Oh, I think I’m ready
To do this on my own
It’s still a little bit scary
But I want you to know
I’ll be okay now,
You can let go

I keep thinking of what a difference 5 years has made. Nine o’clock on a Tuesday night, in a quiet hospital room, I was being told a diagnosis that would change my life forever. At that time, I thought it was the end of my life; forever ended. I will never be sure at what point I decided to not give up and fight to be healthy again. There were many days I spent at home with my parents, with absolutely nothing to do. I thought “this is my life now”, many of times. I guess it doesn’t really matter what made me try to move my ass out of a wheelchair – what matters is that I eventually did. My future was soooo in the balance. Where would I go? What would I do? I felt like I wasted so much time. A lot of that time was spent reflecting on life, about what I’ve done in the past, what I may have done to deserve this, and what I should do to change.


I’ve been very emotional lately. I just put down a deposit on a beautiful, Victorian apartment in Philadelphia where I’ll be living by myself. In the fall, my career in the medical field begins. And I’m doing extremely well in school. I can’t explain what this transition feels like. At one moment, you want to die, you want to throw in the towel and call it quits. The next, you are working so hard, so hard on something you have absolutely no idea what will come about it. And then when all that hard work pays off, it is the most awarding feeling I have ever felt in my life.

Also, the thought of saying goodbye to my mother and father kills me inside. It’s not a permanent goodbye at all. I’ve been through so much with them. It’s like, for the past 5 years, my parents have been teaching me how to ride a bike with training wheels. Now the moment comes when they have to take off the training wheels and just let me go -- a scary moment for all of us.

Not only have I been emotional, my parents have been too. My mother likes to read my blog, my encouraging messages I get from women all over. She tells me all of the time how I’m a different person, how proud of me she is, and I can feel it. My father, on the other hand, was in a constant foul mood. The thought of me leaving killed him a little inside too… perhaps a lot. But he kissed me on the forehead and said, “Natalie, you’ve earned it.”


My point is family is the most crucial thing in anyone’s life. Through thick and thin, that blood runs strong. They may annoy the hell out of you some days, other days may be extremely stressful, but through it all, there is a whole lotta love. And I think that love may have been the moment I decided it was time to not give up hope, and try, try my best to not only make myself happy, but my family happy.

Disabled Accessories Explained

I've never really discussed the side of actually being disabled and my time in a wheelchair. Being in a wheelchair is pretty hardcore -- you are teased, people push your chair around (not in the good way), and you are stared at like a circus freak. Not to mention, taking care of yourself is out of the question. I have a lot of respect for the disabled; dealing with self-esteem is tough. I was 23/24 years old and my mother had to help put my clothes on, I needed help eating as if I were a baby, and my father had to carry me.


This is called a "reacher". The reacher helps put on your shoes, helps gets objects too far up and collects objects fallen on the ground.


This is a commode. The commode is placed next to your bed. With MS, that feeling of having to urinate is very onset, so to help eliminate accidents, a commode is placed by your bed at night. One of the most embarrassing and gross things about being in a wheelchair.


Being bed-ridden, the easiest way to bathe is with this thing. Warm water, soap and a few wash cloths: that is how you clean up in the morning and before bed.


A shower chair is the most important way, and only way, to use the shower. By wheeling yourself as close to the bathtub, someone helps you into the tub and onto the chair. Hey, sitting down to wash your hair may not sound so bad, but just the ability to not have a normal shower is enough to bring you down just a little.


Be respectful to the disabled. Too many people take their mobility for granted.
Life is hard already without the efforts of idiots making it worse.

The Ram

Earlier, I was writing essays for my grad school applications. They were all about my diagnosis with Multiple Sclerosis, but I never gave a proper ending to the story on my blog.

I spent 4 more times in the hospital. This is only counting MS related visits; MS lowers your immune system and creates a whole lot of other hospital visits. With every visit, my faith in the universe dwindled down to the size of a pencil tip. But my last hospital visit was different. A very good friend, Astrid, sat down and said, "you need to fight."

"What the hell do you mean 'you need to fight'?"

"Remember when we were watching Animal Planet and the leopard was attacking the ram and the ram was just giving up? Then at the last minute, the ram just runs the damn thing into the wall and sticks it's horns in it?!", she asks. "You need to be the ram."

I had absolutely no idea what episode she was talking about. Although, I did get what she was trying to say and it made me realize that I was walking in pity of myself. This "woe is me" shit had to go. So I worked my ass off. I felt as if I couldn't live with myself unless I tried enough to accomplish something.

I receive a lot of e-mails asking me how I went from a wheelchair to walking again. There is no special diet. There are no cures with bee stings and snake venom (I'm not kidding, Google it). However, I did push myself every single day to walk, talk and function again. And don't just think your actions will take you far; you have to believe it. You have to believe that your hard work will pay off, that you could make your own happy ending.

Be the ram.

The Size Of The Fight In The Dog

A friend recently told me that is it’s not the size of the dog in the fight; it’s the fight inside the dog. It has been keeping me grounded. (Thank you)

Tonight, I had an invitation to a party where the theme was ‘G’ and I was excited about going. I have a beautiful Geisha costume, some parts original and authentic.
This past week, I’ve been driving to and from class but I’ve noticed that I can feel the pedal, I just don’t know where the pedal begins or ends, so my foots slips off. Or my foot feels so heavy, that I speed up quickly or make short stops. To help myself, I’ve been using a cane while at school; carrying a 20lb book-bag can tire a girl with MS out, but my friends haven’t seen me with a walking device for almost 5 years.

The girls I had plans with have seen me at my worst… at the hospital, during therapy and in a wheelchair. What made me so afraid? When one of my best friends asked when I would be arriving, I spent close to 15 minutes trying to respond whether or not, “should I lie and say I’m sick? Or should I tell the truth and risk friendship?”

My flare up is about a 6 ½ on a scale through 1-10 (10 being back in the chair). It starts off as a pins and needles sensation, like that feeling you get when your foot is just starting to fall asleep. Gradually, the sensation increases as if your leg was full-on asleep, like that moment when you try to gain balance from rising up from your seat and you are having a hard time feeling where your foot lands on the floor. This sensation reaches all the way to my lower breast and it’s all on my right side (which means I must have a lesion on the left side of my brain).

I can easily get treatment. Treatment should take 3-4 days depending on the severity. My flare up started a few weeks ago but I’ve been hesitating calling my neurologist. You see, school is ending and it has been the most difficult semester thus far. I had only 2 weeks left; why stop now? I promised that I would get treatment immediately but there is one thing that bothers me.
The last time I came to my doctor about a flare up, the only symptom was loss of vision. He instantly jumped to the conclusion that I should be admitted into the hospital. After some bargaining, I convinced him to do an at-home treatment where I would be set up with an IV. The steroid IV lasts for 3 days, 3 hours a day and you cannot leave the house because there is a temporary IV in your hand that can’t be exposed. If I came to my doctor now and explained that I’m pretty concerned about my health, I know an at-home treatment would probably be out of the question – I would be hospitalized again.

What gives me hope is that some days are better than others. When I used to have flare ups, they would increasingly become worse by the hour, but this time its been prolonged. What bothers me is that my social life is back to normal, I feel comfortable with my friends, I’m happy – hospitalization would destroy my spirit.

I can never explain how lonely it feels when you are experiencing an exacerbation. You’re basically on your own.
So tonight, instead of the party, I spent hours reading and cutting pictures out of National Geographic magazines from the 1970’s, knitting and painting presents for friends.

What’s different now is that I know I have it in me to fight, like my friend said. Years ago, I had nothing to fight for… my life was transient, unstable and had no direction. Now, I want my Doctorate more than anything, I love my friends, and emotionally I feel calm and stability I’ve never felt before.

Tonight, it made me happy to think that the only problems I have in my life are schoolwork and who to kiss at midnight on New Years Eve. I will never let my MS trump me, I hold the cards and it is my decision how to play them.

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.

Alive & Kicking

Sometimes you refuse to believe that something is going to work out quite well for yourself. That could be because fearing being disappointed should you get your hopes a little too high. Then, for a moment, you imagine that something you hope for did not come true. What then? Would all that time spent feeling hopeful and happy have been a waste? I’m a strong believer in maintaining a sense of excitement about something, anything at all, and it will manifest.

I was gathering things from the attic when I decided to take a break and sit down. A few minutes of relaxation, I realize I’m sitting in my wheelchair, unintentionally.

I have come so far from where I was a little over two years ago. Straight A’s in school, a stable life, the best of friends, an active (maybe over active) social life, and a level of happiness I had never dreamed of.

There are setbacks. There will be people that bring you down, situations that bring out the worst in you and days where leaving the house feels like torture. But you can’t let those setbacks keep you from living. You never know whether tomorrow will bring you the best of opportunities or the worst of moods – but that’s the glory of it. You can't appreciate the good in things unless you have experienced the bad.

Why is it that the most appealing fruit is always on the highest branch?
...Because you can’t see the imperfections from a distance.

Dog Days Are Over

After my second hospital stay, I was officially living with my parents again, in a new home. My father worked really hard on the house to make it handicapped accessible; railings, bars, even pouring concrete over the outside steps to make a ramp. Even the carpeted floors were ripped up and replaced with hardwood.

I never became used to using a wheelchair. No one really invites you out anymore because it’s a hassle – folding up the wheelchair, shoving it in the back of the trunk, and getting me into the car. So, I was left at home a lot.

I’m the kind of person that needs to be constantly doing something. Any time I’m idle, my mind goes on overdrive, so I try to keep as busy as possible. The wheelchair was holding me back and it was spinning me into a depression.

Since there was nothing else better to do, I started doing my own therapy every chance I had. Any empty minute left to myself during the day, I did everything possible to move my legs. While watching television, I moved my legs up and down, in a marching motion. In bed, I would do leg lifts, and in the bath, I’d work on my muscles. Finally, my sister purchased a treadmill for disabled persons. I was able to pull my wheelchair up to the side, climb on and hold on for dear life. For almost two years, I worked myself to the bone, but I was finally able to walk again. Of course, wheelchair led to a walker, a walker to a cane, but now I’m able to move freely without any assistance.

My father and I put my wheelchair in the attic a few months ago.

I think if you have enough will and faith in something, you can make anything happen.

I'll Make A Great Pet.

My family realized that while my condition was worsening, I wouldn’t be able to live in a two-story apartment, with small doors and heavy carpeting. My second hospital stay was longer, so my family took the opportunity to look for a home that would accommodate my handicapped needs.

My sister from Buffalo flew in to help my parents find a home. My sister was always great at handling the most stressful of situations. Family visits were mostly them showing photos of homes they have visited, fix-me-ups that needed work, and my father detailing how he would made the home handicapped accessible. Meanwhile, I’m being thrown around by hearing the word “handicapped” every 5 minutes from my family. It was a bad word, and I didn’t want to hear it; I didn’t want to believe in it. I felt as if I were becoming the nuisance and something that created more trouble than necessary.

I was being treated like my family was adopting a dog, trying to prepare the house for safety and potty training.

On the other hand, my speech therapist was a young woman confined to a wheelchair. My father, who sometimes is oblivious to the things that come out of his mouth, was so surprised that they let a woman in a wheelchair work at a hospital.

“That’s so nice of them to help her!” he says, oblivious that the statement would be disrespectful.

She fell off a bunk bed at 19 and crushed her spinal cord. My speech therapist made a very big impact on my recovery. It was the first time I would speak with someone who knew what I was going through, but also tell me about a bright future I could have in a wheelchair. She was married, had a great job, and loving friends; all things I wanted but didn’t think I could have being in a wheelchair.

My three-month stay in the hospital was coming to an end and I was terrified of being in the “real world”, riding in my wheelchair. My speech therapist prepared me, Rocky-style, on how to cope being handicapped.

There is one thing I had wrong about being handicapped at my age; pity. I really thought people would see this young girl in a wheelchair and think, “oh gee, I’m sorry!” However, when I made the rare treks outside, I was in someone’s way. People would huff and puff, and try to blow my wheelchair down to get past me. Children would climb on my wheelchair, and their parents would be too embarrassed to stop them. How could this be attractive? An overweight, handicapped girl with rug-rats using her wheelchair like a jungle gym.

Visual Reference: Steroid Side Effects.

2005: size 2
late 2006: size 2
late 2007: size 12
now (2010): size 8

Beginning of 2007 was spent in a wheelchair, and 2008, along with daily doses of Prednisone, contributed to dramatic weight gain. As of now, I'm still losing weight, with the help of daily exercise, and a healthy diet.

Healing A Broken Heart

My father was never one to show emotions. Since the diagnosis of my MS, he had thought he caused it. Even though numerous Neurologists have shown studies that prove genetics have nothing to do with it, he still believed it.

His sister Joyce had a son named Johnny. Johnny was diagnosed at the age of only 17. Now, I’m not sure if you had any knowledge of this, but when men are diagnosed at a young (or even older) age, their MS progresses much faster with a bad grudge. Johnny did go on to marry and carry on a “regular” life, but my aunt still tried everything in her being to help him. Help would include trips to get self-injected bee stings; snake venom or other rumors that circle in the MS community. His immune system later in life would catch up to him and Joyce would lose a son.

My aunt Joyce truly loves me. I feel she sees Johnny in me, so do my father, sister and my brother Frankie. I couldn’t be any luckier to have such a person in my life; my aunt is a true super woman.

Since the stress was aggravating my MS, I was using a wheelchair again. However, I was also using a walker (with pink balls at the tips) to walk short distances. This would become a problem with my living conditions. My parents realized the nice (but cramped) apartment would have to be traded up for a home. As quick as you could say, “move”, we were living in a 55+ over community in really nice suburban town. The house was very modest but homely. My father had the carpet ripped up for hardwood floors, door frames were ripped out to make room for wider space and my father even built me a wheelchair ramp. For a man in his early 60’s, he sure broke his back (literally) making a better home for me. My parents are not the most financially stable people. Their paychecks went directly into my well-being. I will be forever grateful to them.

My sister would also buy something that would be key to my recovery. Since I no longer had a private gym to do my therapy, my sister (Carly) invested in a very expensive treadmill. The treadmill was designed for the therapy I needed; with large handlebars for support, emergency break and a large tread. It was also easy to move from wheelchair to an upright position. Every day I would walk for 15-30 minutes on the treadmill, practicing the “marching step”; knees high, land toe to heel. Between the treadmill and using my walker for short distances, I was making process.

My father became my safety, my mother became my, well, mother figure, and my sister would become the ear I needed since she lives in Buffalo.

I would also have one other person for support; my best friend Monica who I have known for almost 20 years now. We met as kids on the Internet in grade school and kept in touch since. During the late summer, Monica paid me a visit. By that time, I was walking on my own and with a cane if I really needed it. Monica’s visit would prove to me that there are truly beautiful people in society and I am fortunate to call her my best friend, even something close to a sister.

During a visit to New York City, I bumped into J (the on/off again boyfriend). As nothing happened, I would visit him a few days later after Monica left. While my visit at his new apartment, I couldn’t think of anything else but his hanging up on me in the hospital. I had an awakening looking into that face I once loved more than anything. That visit would be my last, our communication would be nothing but cordial, and I would stay the hell away from men.

Throughout those four years, my dating life came at a standstill and J became the poster boy of how my wall was built. My efforts in love would be dedicated to helping others with Multiple Sclerosis and earning my Ph.D., in Clinical research Psychology. Easily one of the best things that has happened to me. Thanks J.

Fight, Swagger & Sway.

It was February 14, 2006 and I was sitting impatiently in an emergency room, watching the clock. I remember it was nearly 5:00 pm, I was 23 years old and worried my friends would make plans without me. However, I sat waiting for a neurologist awaiting results on why both of my legs were asleep for the past 5 hours.
Begging my mother to take me home, she pleaded with me to stay. My mother always had this "sixth sense" and "witchy feelings" about things. This incident was something my mother was genuinely worried about. The only thing on my mind was calling my on/off again boyfriend J and worrying why he hasn't called back, considering he knew I was in the hospital.
It seemed like 100 needles and a spinal tap later, I was admitted overnight. An over abundance of questions like,"do you do drugs?"
"No."
"Are you telling the truth?"
"Yes."
"All of your tests are clear. Are you sure it isn't drugs, Natalie?"
It really wasn't. At 23 years old, I drank as much as anyone else my age. I may have smoked pot 3 or 4 times at that point, but I was pretty much a clean, good girl.

It wasn't until the next night that I finally had my diagnosis. My MRI showed 2 lesions in my brain. The hallway was very quiet, visiting hours were over and it was 9:00 at night. My neurologist came into my room with a stone face and I knew it wasn't good. He pulled up a chair, took my hand and in his most serious doctor-like voice, he told me that I have Multiple Sclerosis. Now, at this point, he went on telling me what it was all about but I already knew. I had a cousin with MS who passed away from complications because of it.
I was completely frozen and disconnected from reality. My family was not around to comfort me, my doctor left as soon as the news broke and I was all alone. I picked up the room phone to call my on/off again boyfriend J, who, at this point, never called back. J's phone number was long-distance and the hospital phone would only let me dial out if I paid by credit card. Frantically, I called and called with no response, leaving messages to call back at my hospital line. I had spent close to 40 dollars trying to reach him. An hour later, he calls, sounding annoyed and bothered by my messages.
"What is it?!" J blurts.
"The doctor says I have Multiple Sclerosis."
"I can't talk right now. I'm on my cell phone and I'm driving. Let me call you back." Click.

After a few days, I notified friends of my condition. I had 3 visitors over the 3 weeks I was there. My friends were slowly pulling away, not sure how to handle my illness and what to say. I was officially out of order and no use to them anymore. A friend in a wheelchair is no friend at all.

One morning, a young girl from physical therapy came to work with me. She looks at me with doubtful eyes. "I don't think you have MS", she says. "I think your doctor is wrong. I've worked with patients that have MS and you clearly don't have MS."
After a conversation with my doctor about this, she was fired a day later.

I was later transferred to a facility for intensive physical therapy. My condition was worsening, the pins and needles feeling had moved to my torso. The nerves were so sensitive that a touch to the feet would send me into a great deal of pain.
My new hospital room was small, dirty and depressing. The walls were a dark blue and my roommate was a woman that just had her leg cut off. I could see her stitches and open wounds. She would vomit into the trash can every 10 minutes or so, while the room would stink to the point of my gagging. I could hear older people scream for help, whine for their deceased loved ones and cry. Realizing I might be the youngest person here, I felt more isolated than I have ever felt. My phone wouldn't ring. My friends had left. My parents were so upset, they couldn't give me eye contact. Father would find excuses to not visit. I sat in an old, squeaky wheelchair staring out the window, dreaming of what I could be doing in the outside world.
The next morning at 7 am, I was moved into the cafeteria for breakfast. Trying to maneuver my wheelchair down the hall, I realized I was exactly right. The majority of the patients here were above the age of 65. With the combination of not knowing how to use a wheelchair, being around sick older people and in total isolation, I broke down in front of everyone to see. I screamed like I had never screamed before. I wanted to be in my apartment, laughing with my friends. My heart broke into tiny pieces and my soul left me deserted as I knew my life as I knew it was over.

A doctor came to comfort me, with his arms around me, he whispers "Natalie, I know it's not easy. We have to get you used to using this wheelchair! It will be your friend for life!" as if he were coaching me through my own personal internal war. He actually thought I was upset because I couldn't use my wheelchair.

Wheelchair for life?
This was the first time I had heard the news. I would never walk again, he said. My wheelchair would be my best friend, he said.

I found out later from a nurse that the same doctor ordered that all sharp objects be removed from my room. Any shoe laces, any glass, anything I could harm myself with would be removed from my room and my roommate would have to leave. The hospital now thought of me as a suicidal risk. And I was.

A week went by without eating, without leaving the room or asking for help. I was so angry. I had never been that angry in my life. I was only 23 years old and this wasn't supposed to happen. The phone call from J was the last I heard from him. He never called back and never heard from him again. I heard from my family that my father moved me out of my apartment. My friends were not returning phone calls. Father still couldn't make eye contact with me and my mother could only look at me in pity. They all did; nurses, patients, therapists. I felt dead inside.

Screw this! I'll show them. I got into my wheelchair and practiced for hours. I tried with everything I had to move my legs every hour of the day.

I WAS going to walk again. I would make my doctors all liars. I would be alive again.


Though with cancer problems since childhood, this wouldn't be the first rodeo in the hospital.