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Friday, February 23, 2007

Here is what I have so far...

I was sixteen when I found out. Thanksgiving 1998. I was sitting in church with my family and I knew that something was wrong. I couldnt see. I remember leaning over to my mom and saying "Mom, I cant see." In our church in Iowa, where i'm from, there are three stained glass windows above the altar. The middle one is an image of Jesus on the cross, and even though I didnt know what was to come in the next few days, I remember that I have NEVER prayed so hard in my life, my eyes never left that image.
Over the next few days I was referred from my regular eye doctor to an optimologist, to a specialist, and finally to a neurologist. It was that one sentence that changed my life forever, "I think you have MS." So I did the MRI, the tests, the lumbar puncture, and my MRI showed something very scary, there were actually several lesions. Surprising amount considering I was only 16. This had been in me for years already.
My neurologist perscribed Betaseron, I had age on my side and my health outlook was good. The only downside was that I didnt know how to handle what I was just given. I knew nothing about MS. I was scared. And for a long time I was in denial. I felt fine. I looked fine. I FELT FINE!! My eyesight came back, and I had no other "Symptoms", or so I thought. I have invisible symptoms. The lack or balance, a slight gait, problems swallowing, remembering, finding the right word, and I am so tired all the time. Somedays it is difficult to even lift my arms. But all those things were so easy to explain away so I wouldint have to deal with it. I just wanted to go to prom, have a boyfriend, graduate, go to college. I thought I wouldnt be able to enjoy those things if I was "sick".
I'm 24 now. And I have had all those things, I just had them with MS. My husband is wonderful and comes to all my apppointments with me. I have come to terms with what I was unable to face all those years ago. I have grown up alot since then. And here is what I have learned. I will not crumble, I will not wilt, I may stumble and I may fall, but I will always pick myself back up. I will bloom wherever I am planted.
The hardest part for me was coming to terms with an invisible disease. I am very lucky in that I have not had any serious exacerbations since that Thanksgiving in 1998. So for awhile I went off my meds. I had switched from Betaseron to Copaxone. I was able to handle the side effects better.
Recently, I had another MRI done, my fourth. I had increased lesions. Heavily increased lesions. I had an effect but no cause. And that it hard, even now, for me to wrap my mind around. For there to be an effect, there has to be a cause, and I didnt FEEL bad. All that time I was walking around, thinking I was fine, my body had other ideas.
I have gone back on my meds, and I will stay on them. I work at the National MS Office here in Anchorage,Alaska. I feel like it is my way of taking control, fighting back. I will fight back. I will help others who are going through what I went through. I will help raise money for research into a cure. I will share my story so other people can read it and relate because they were a scared teenager once too. And somedays I will cry. I will cry because my tears dont compromise my strength.
I am 24. I had my d-day 8 years ago. And I have a full life ahead of me. MS isnt who I am. I am a wife, a sister, a daughter, an employee, a friend, an activist, and I have MS.

7 comments:

Amanda said...

That is really good, Emily.

Ems said...

Thanks. It was hard for me to read it to Matt. I cried when I got to the end paragraph, which is where I am afraid I will have trouble.

I know Manda invited some of you to read and give suggestions. I do welcome them. And everything is taken in an objective light. You can insult me by maing suggestions on making t better. This is something that is VERY important to me, so please, feel free. There is so much I want to talk about and my fear is that I jump topics. Mainly, I want to focus on being so young, cuz it doesnt happen to a lot of people. Most are older when they find out. And the "invisible" sympyoms, because unless you have them you dont really understand them. Now the Faces website they will cuz most are people with MS. But for MS Awarness wek, it is people who dont know alot, if anything, about MS. And I want to illustrate the uncertainity that is MS, becuse sometimes even the person who HAS it dosnt realize something is happening to them. Especially if they have a less severe case like I do.

Oh, and yes, I know there are some misspelling, but those have been corrected in the "Official" draft, so no need to point those out.

Mindi Scott said...

Hi, Emily! I know your sister through the internet and came here via her blog. :-)

I like your essay. This is a great story of hope and strength!

As far as suggestions, I think the content is good and true. As a reader, I always like to see stories tie up in some way so that the conclusion specifically references back to the introduction. It's predictible as a style-choice, but it's always satisfying (to me).

In your intro, you mention the day at church with your family and the stained glass image. I was expecting your ending to come back the stained glass in some manner. It's compelling and very visual.

Clearly, if you were to bring the stained glass image into your conclusion, it would give the piece a religious tone throughout. I'm not sure if that's what you want since that wasn't the direction you headed originally, but for certain audiences it would very inspirational and might be a great direction to go with it. Just a thought...

Alternately, if you don't want the piece to take a spiritual/religious angle, you might want to consider a different intro where you don't mention exactly where you were when you first realized you couldn't see. You could instead focus on the shock of that one sentence that changed your life forever.

Also, as a side-note: You say that you couldn't see, but that your eyes never left the image. Were you fully blind and just looking in the direction of that image because you knew it from memory? Or was you vision just badly distorted/fuzzy? (I'm guessing the latter, but it isn't clear to me.)

Okay. I hope this makes sense and is helpful to you in some way. Let me know if I was unclear!

allison said...

Hi Emily

Also sent here from Amanda.

Thank you for sharing your story with us. It is a very powerful piece; I was especially moved by "And here is what I have learned. I will not crumble, I will not wilt, I may stumble and I may fall, but I will always pick myself back up. I will bloom wherever I am planted." I might consider moving that to later in your piece, maybe right before "And I will cry...".

If you like Min's idea about tying the window into your conclusion, may I suggest using the image of the pieces of coloured glass making a whole? Your life was certainly shattered by your diagnosis, and yet you have made a beautiful picture of those pieces.

Finally, I also questioned the part where you couldn't see, but fixed your eyes on the stained glass. If you could only see blurs, add that to your story. Once again, the muddled colours can make some strong imager, as would simply remembering what the window looked like in your mind.

Feel free to ignore any of my suggestions. Your story is a deeply personal one and you should tell it as you see best.

Ems said...

I love the idea of the pieces coming together to make a whole, beautiful picture.

Eileen said...

Hi Emily. Again, I was sent here through Amanda.

I don't really have any news suggestions of my own, but I just wanted to reitirate what Allison and Min said. I like their ideas regarding incorporating the stained glass window in the end - I think that's a beautiful image. And I also think it might help to clarify what you mean in terms of the blindness.

Sorry I can't be more help or have anything original to say. But your story is very moving.

Chelsea said...

Hey Emily,

I think everyone's tips are quite good. I know you said you fixed the spelling and punctuation, but if you want someone else to go over it again I am willing. I love doing that sort of thing. I always miss those type of things in my own writing, but tend to catch them in everyone else's. good job!