Archive | September, 2012

For Lillian

30 Sep

*I wrote this letter for a friend that died last year on September 2, 2011. Image

Dear Lillian,

It has been a year- a long year, since you have been gone. There have been changes in the house, but one constant remains; we miss you. I miss your morning routine. I loved how it would be just us. Some days you through your routine and other mornings I would be greeted with a beautiful airy “hi”.  You would pick out your top and accessories, with a nod and a smile. Then our quiet time together would be over. I would push the door to the side and we would be met with a burst of energy.   We would rush through breakfast, if wheeltrans was coming early.  I always loved how you greet the cute wheeltrans driver with a flirtatious, “Hi”.

I miss your “hi”. I loved how you would always say, “hiiii” to everyone you passed on our walks. I often walk with my head down, listening to my music and not paying attention. You taught me that there is always beauty in trying to reach out, offering a hello and a smile. I have been consciously trying to put my iPod away and walk tall, smiling at passersby the way you did. I still giggle every time; I pass the LCBO on Gerard. I wanted to keep my head down, pass the drunken man sitting on the sidewalk and you won’t pass him without saying, “Hi”. The drunken man’s face lit up.  He sat up a little taller and responding he said, “Hi Madame”. You didn’t discriminate, everyone deserves a “hi”. In that moment you taught me so much. You taught me that every person deserves equal respect, every person deserves a “Hi”.

The lessons I have learned from you helped me so much, especially this year. You last month’s were very hard.  You had hard moments, but I am not left with the memory of those days. I am left with the memories of you and me watching Glee and Dirty Dancing. You brought joy into your life even in the most desperate of moments.  You taught me that, we cannot control our situations, but we can choose how we react to them. I remember singing with you in the hospital room, I remember our walk to Allan Gardens, I remember our last meal together as a house, I remember the dance party in the ICU, and I remember our last time together. We watched Dirty Dancing and you sang along to every song. Lillian, your strength helped me and shaped me more than you could have imagined.

This past December, I got sick and was diagnosed with MS. My first thought that popped into my head was, “What would Lillian do?” Lillian you taught me that I have a choice- I could allow this to be an absolutely negative experience or I could still try and find the joy in the everyday. It hasn’t been easy, as I am sure it wasn’t easy for you, but you did it.  When I get low, I think of you and you singing “Let it be” with the house, or the dance party in the ICU your arm outstretched fist rhythmically pumping to the music of Glee. You taught me to find the joy in the hardest moments. You taught me that every person deserves a hello and a smile. I miss you. I miss your smile. I miss your voice. Lillian there is a quote that I believe pertains to you-

“Here is my secret. It is very simple: It is only with the heart that one can see rightly; what is essential is invisible to the eye.”

Lillian you saw rightly. You saw with your heart and we are so blessed for that. Thank you for teaching me so much about strength, beauty, acceptance and joy. You will always be missed.

With deep love and gratitude,

Mandi

The MS and me

30 Sep

It is October.  Not yet, but in one day it will be October. This is the month that I always feel is the beginning of my year. Maybe it is because I am an October baby or maybe it is because I am the daughter of teachers. Either way, this is the time of year that I reflect and make goals for myself. Obviously the possibilities project was a horrible failure, after one day I aborted the project. I realized that I wasn’t ready. Truth is, after reading my friend’s Blog, I realized I didn’t want my blog to be a creative writing project, but maybe a space where I could be completely honest. I carry around so many feelings. If a person as me how I am doing, I say I am fine. Totally fine. I am lucky. Truth is I am lucky, I have great parents, a great big brother, a group of talented and interesting friends and a job I mostly love that inspires me.

    
  Notice what I left off the list, I am healthy. As Joan Didon said, “I am a healthy sick person”. Last December, five days before Christmas I was diagnosed with Relapse Remitting Multiple Sclerosis. I had MS before Jack Osbourne made it look cool. My body went through a full check list of symptoms. Which wasn’t fun at the time, but it made being diagnosed easy. MRI lesions on the brain- check. Numb left side- check. Unable to balance- check.(it became a kind of party trick for my roommates and I. Watch me walk like a drunk. It was funny) Electric shocks when ever I turn my head- check. Extreme fatigue- check and check. Seeing Double- check. I remember when the eye doctor ( I forget his proper title) told me sadly that I had demyelination behind my right retina. I was so happy that I wasn’t making seeing double up. I thanked him. He looked at me oddly. I needed evidence that what I was experiencing was not in my head, well it is in my head- but you know. I had some friends say some really insulting things, not believing that what I was experiencing was true. I had to leave my job, until my body became healthy again. It has taken about 10 months before I it began to feel well again. I thought in August with my return to work, that I have this MS thing under control, it is a secondary problem. I can ignore it. I will take my needle at night. I will attempt at eating healthy, I will work out and I will have balance in my life. This MS thing will not bother me for years! Wrong. Every time, I don’t get enough rest or I push myself too far, my body reacts. My legs are heavier, especially the left side, my fingers tingle and the fatigue sets in again. I crash. I have one crash day a week and every time I crash, I am surprised. It is different than just being tired, because tired you can push through it. I feel like it is comparable to not sleeping for about a week.(what most new mothers go through) Your limbs are heavy and every thought is fuzzy. I become very sensitive to sound. It feels like everyone is shouting in my ear. All sounds are heightened. Every time I have a crash day, I get a little low. I think I should be used to this, but I am not. I don’t know if I ever want to fully get used to it because then that means part of me has expected that this is my lot. I feel like my body has betrayed me. I have to fight myself and figure out how to live well with this disease. I have to figure out how to come to peace with the MS. That is my goal this year- to live MS well. It is going to be here and I might as well get used to it. I have always been a positive person and this is my battle. To be positive about MS. I like my outlook on life. I need to learn that I am enough.

Yup that is my goal for my 34 year- To learn that I am enough as I am. The MS has not broken me. I went to a doctor for something and they asked me if I still have hope for myself. What an odd question, but my response surprised me still- Yes, of course. My Doctor said, you will be fine then. I still have hope, but I still feel broken. A lot of work for my 34 year.