Written by: MS Hugs and Kisses

May 1999

The first time it really hit me hard was around Christmas time. I was at a party. Things were going great. I was drinking, talking to people and basically having an amazing time.

I went upstairs to the bathroom. I was alone. The numbness in my limbs and torso had now been a part of me for about three months. It was only getting worse. In the state I was in this proved to be a bad time to start thinking.

Jen came upstairs to see what was taking me so long. Noticing I was upset she gave me a hug. Feeling the pressure of her arms around me offered me no comfort. I couldn’t feel the warmth of her touch. That’s when I broke down. It was just too much for me to handle.

It was September and I had just underwent major knee surgery. The procedure had caused a lot of trauma to my system. Nothing in my body seemed to be working right. So when I woke up and my hands were tingling I wrote it off as surgery side effects.

The following day was more eventful, my torso was numb, my feet were numb and my hands weren’t much better off. This problem continued for three weeks without letting up. It was becoming harder to make myself believe it had anything to do with my surgery. I chose to see a doctor.

My family doctor was no help. She didn’t know what the problem was so I got shipped to see a neurologist.

After a small examination she decided it was best to send me for some tests.

In my head I still tried to tell myself nothing was wrong. Just tests to prove there was no problem. In my heart though, I knew there was something the doctor wasn’t telling me. She was able to describe my symptoms to me, yet offered no explanation for them.

I continued to lie to myself.

I figured I could live with the numbness in my hands but to have my torso numb was very scary. Being touched but not feeling.

 

I often wondered what it would be like to live like this forever. To feel nothing. To be unable to distinguish the pressure of a loving hand from a cold stone.

I sometimes had to check two or three times a day to see if I had remembered to put on a bra. I often looked down just to make sure I was wearing a shirt.

This seems funny now, looking back. At the time the act of laughter was only a distant memory.

Following my two tests I was contacted by my doctor’s secretary. She wanted to be sure I had booked a follow-up appointment.

I knew at this point nothing was going to be alright. The doctor obviously had something to tell me. They never contact you with good news. No one seems to care when you’re healthy.

For the next week I lived in terror of what she might tell me.

My friends tried to boost my moral by telling me it was nothing. This didn’t make me feel better. There was no way they could understand the pressure I was under.

The weight on my chest had become too heavy to carry. Which seemed funny to me since one of my problems was chest numbness.

It was time to see the doctor.

My need to face whatever this was alone was overpowering. I wouldn’t let anyone come with me.

I walked into the office, head held high. Whatever it was it couldn’t be that bad. The numbness was gone, so if it was anything it must be better now.

I sat down in the chair across from her. She had a bad news air about her. My heart began to race.

She looked at me with what could have been mistaken for sympathy. Time was ticking by so slowly and her voice was coming out in a deep, slow distortion.

How do doctors build up such a thick skin? To tell someone that they are not the vibrant person they once believed they were. It must be trying. Not to mention, they do it all day long.

Eighteen years old and diagnosed with a chronic debilitating disease.

I heard nothing leading up to the point when the bomb dropped. Multiple Sclerosis!

My world was crushed.

Flash to me in a wheelchair.

She actually asked me if I was alright. Of course I’m not fucking alright! It’s all over!

Is anyone actually okay after hearing this kind of news?

Then denial hit. Maybe it was a mistake…stranger things have happened. I guess this put a little too much hope in my eyes because the doctor felt the need to knock me down once again. No chance of a mistake.

My first coherent thought was, “Thank god I did the MS readathon when I was a kid.”

When I was a kid and had no cares, no problems. All I worried about was if I would be allowed to play with my friends for as long as I wanted.

Whenever you see a telethon you always think, “What a shame. That poor person. Look how well they’re coping.” Then you turn the channel. We all do. It’s damn depressing. Everyone shows sympathy. No one really cares.

All of a sudden I couldn’t turn the channel. It was me. I was still wishing it was someone else. I know that’s a horrible thought. Like someone else in the world is more ‘worthy’ of this ‘present’ than I am.

My heart remained thumping heavily in my chest. I was unable to believe this and now it was time to tell other people.

First my parents. I knew this would be far from easy. I went for the, “We have to talk” method. I still hadn’t cried. I just blurted it out. It sounded more like I was telling them I won the lottery. “Mom, Dad, I have MS!”

I really didn’t want to listen to what they had to say. I knew my mother would overreact. How could I help other people come to terms with this when I only had twenty minutes to process it myself.

Of course they reacted like it’s their problem. I couldn’t understand this.

My mother tried to hug me. As if a hug from mom would make it all go away, right? Maybe she could kiss it all better. She used to be able to make cuts and bruises practically disappear with her kiss.

Why was it no longer this easy?

The first time I cried was because of something I was reading. They (whoever they are) actually wrote, “Your life will never be the same again.”

This is a horrible thing to say to someone who feels no more sick than they did an hour before they found out. You need someone to tell you how good things are. Not how bad they are.

The tears only lasted a minute. They were not going to get to me that easy. I am stronger than that. I can take it.

There were more people to tell. Family, friends and a boyfriend.

Why should I be the one to tell them? I should have given all their phone numbers to my doctor. Had she not done the tests, I wouldn’t have to tell them anything. I wouldn’t have to know.

I felt sorry for the people I told. They were the ones who had to search for something to say to me.

It’s like when someone you never knew dies. You’re sorry, but what do you say to a grieving family when you really don’t care. It’s not keeping you up at night.

I got a lot of, “are you alright” and “it’ll be okay.” As if they know something the doctor doesn’t. Are they psychic? How is everyone so damn positive it’s not going to be horrible?

It was hard to make my boyfriend believe me. First I was joking. Then the doctor was lying. Telling him that one day he may have to take care of me. That I may be incapable of doing things for myself someday.

It could creep up on  me out of nowhere. It’s as simple as going to bed one night. I may wake up one day and not be able to move. Paralysis overnight. If that isn’t the worst thought in the world, I don’t know what is. It almost makes me want to avoid sleep for fear of what tomorrow may bring.

I spent the week after my diagnosis blissfully drunk. Every night. I found that if I had enough to drink I had no problems sleeping. I could more or less Pass out.

Maybe I’ll just become a raving alcoholic. Seemed like a good idea at the time.

I stopped drinking to help me sleep. Instead I just lay awake and waited for the birds to start chirping.

Sleeping during the day was easier. It wasn’t so quiet and lonely.

I lived on five hours sleep total that week. My school work began to suffer and the worst part about it was that I didn’t give a shit! I wanted to tell my teachers to stick their school work up their asses.

I finally resorted to organic sleeping pills. This worked!

Soon enough my daily routine returned to normal.

This didn’t change the fact that I was now faced with many decisions that I didn’t want to make until I was older. Life was put into perspective for me.

There are so many things I want to do in my lifetime. Now every time I think of one of them…I’m forced to wonder if one day I may lose my opportunity.

What if I run out of energy to have children, or I can no longer dance or walk tomorrow?

These are the questions that plague me constantly. They rob me of my happiness at any given time and can make me cry anywhere.

I don’t want people to have to look after me. I want to be independent.

Living with my mother remains hard. I truly think she believes that someone is somehow punishing her. Like I don’t have any problems. Maybe I shouldn’t be so upset since after all the world revolves around her. Maybe I’d be able to come to terms better if she wasn’t constantly needing me to comfort her and tell her everything is alright.

I hear people say things like, “I never asked to be born” all the time.

It makes me wonder why I got stuck with this and not one of those people. The one’s who don’t care if they live or die.

This raises the question…Why do bad things happen to good people?

Maybe if I spent the first eighteen years of my life doing horrible things this wouldn’t have happened.

Life has suddenly become a privilege and is no longer a right.

I have to go to bed every night wondering if I’ll be able to do the things I did that day when I wake up tomorrow.

Could this be the last time I run through the forest?

I try not to dwell on things like this though.

I want to live everyday to its fullest. As if it might be my last.

I still haven’t come to terms with it. I hope at least I can begin to accept it as part of me.

I guess I won’t truly come to terms until it hits me. I guess I don’t know what my future holds. I guess that is what the rest of my life is…A guess!

 

 

3 thoughts on “A Guess: My MS Diagnosis

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