A Blessing in Disguise | My MS Diagnosis

MS research, MS blog, Multiple sclerosis diagnosis, Kaley ZeitouniWELCOME TO THE WORLD, WELCOME TO LIFE!

This is how I felt when I was diagnosed with MS at twelve years old.  Suddenly I felt like I was alive!  Now, make no mistake, I am not entertaining any illusions that having a chronic illness is a fun walk in the park.  Because, it is NOT.  But my diagnosis completely changed the way I viewed and experienced life.

You know those people in their fifties who survive heart surgery and feel invigorated by their new lease on life?  Well I got my new lease on life at age twelve.  I’m not sure many people can imagine what that’s like.  I mean, people spend their entire lives trying to discover the meaning of life, and I discovered it at twelve years old with my whole life ahead of me!

I saw my diagnosis as a gift because it allowed me to realize what my blessings were.  The ability to walk and see were things that I suddenly appreciated that literally the day before I had taken for granted.  And it was not just abilities that I began to appreciate, I valued my relationships and experiences differently.  I spent more time with friends and less time studying.  More time with family and less time watching TV.  I realized that when I’m forty years old and spending time with my children, I’m not going to share stories with them about my “straight A’s” or “how hard I studied for that chemistry test.”  I am going to tell them about the time my friends and I were the youngest people at the premiere of the Adam Sandler movie and the days we spent at Magic Mountain cutting the lines.

The most important thing I will tell my children is the types of friends I had and what friendship means.  At that ripe age of twelve, my best friend, Rona Kremer, learned to give me my shots in case I was too tired to do it myself on a class trip or a sleep over.  My friends had to choose activities based on my limitations….and they NEVER complained.  The most important thing my friends did for me was tell me what I meant to them, what my diagnosis meant to them.

MS Blog, MS research, MS treatment, Multiple sclerosis blog

One night, we had a big sleep over with all the girls at my friend Michelle’s house.  We were playing one of those “Teenage Chicken Soup for the Soul” type games where you pick up a card with a question on it and everyone takes turns answering the question.  A card was pulled, “who is your hero?”  Since my diagnosis, my life had been touched by many incredible people.  I suddenly had countless mentors who had reached out to me and my family.  I was stumped by this question.  Who would I choose?  The girls all looked at each other and looked at me, and one of them announced “well we know who ours is.”  I find it hysterical in hindsight because at that moment I felt completely left out!  I was thinking “wow, well thanks a lot for excluding me in your communal decision.”  Putting me feelings of exclusion aside, I went first. “I do not have just one hero.  Over the last few months I have met so many incredible people who have impacted my life in a really big way.  I cannot choose one hero, I’m pretty lucky.”  And then it was their turn as a group.  Their hero was me.  They each expressed why they chose me.  Do me a favor, think back to when you were twelve years old.  Imagine this is what your closest friends just told you.  I mean can you even actually hold that image in your mind?

These girls, who are today women, gave me a gift that night.  They opened my eyes to something I had not seen before that moment.  They told me that I was their hero because of the way I had started to live my life, because of how I changed my priorities, my relationships, and my perspective.  They told me that I had become their example and that my experience was no impacting their lives.  They were now living differently, appreciating their parents more, creating more meaningful memories, and being grateful for the little things.  They showed me that my diagnosis was not just about me!  It was about everyone around me and all the lives that I could touch with it.  They gave me the gift of purpose by showing me that my diagnosis could have a positive influence on someone else’s life, and not just mine.  And at that moment I set out to tell my story to as many people as possible.  So here I am, telling you.

I am excited to be writing this blog and sharing my experiences with the world.  I began by saying that despite my positive outlook, having a chronic illness is NOT a walk in the park.

Because this is not easy for ANYONE, I want to help:

  1. people living with an illness feel less alone;
  2. family members and caregivers increase their understanding about living with an illness;
  3. people untouched by illness to get a glimpse of what this life is like;
  4. every person understand the importance of research and education.

So I will be sharing information on the following topics:

–   Every day life with MS

–   Relationships & Chronic Illness

–   Medical challenges

–   Current MS Research

–   What Sanguine Means to Me

–   Up and coming drugs

–   Hope for the CURE

Contact me or comment here if there are topics you would like me to blog about!

MS blog, Multiple sclerosis blog, MS research, multiple sclerosis young diagnosis

 My amazing family!

1 Comment

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