Tuesday, February 17, 2009

My journey, my chrysalis.

Life can be so rough; at times forcefully sucking you from the vacuum of  your comfort zone, then thrusting you into the abyss of transformation. Although change is often a welcomed part of life, it can also be one of the most frustrating and frightening of life's experiences. How many times in my young life have I felt like a fragile seedling plucked from my mothers soil, roots and all and thrown as far as the eye could see? Time passing by so slowly as I soar through the sky almost suspended in the air, awaiting my landing in a fresh new spot of soil to sow my newly matured roots. 

At the tender age of 33, just a couple months shy of my 34th Birthday, I can hardly count the many transformative experiences of my life. And how many of those times of change have been unwelcome? My body changing due to the course of Multiple Sclerosis or Dysautonomia. Who in their right mind would welcome a transformation like that? And lets not forget to acknowledge that  it makes a poor topic of conversation. It is literally painful for me to talk about the frivolous or the mundane superficial topics most women my age converse about. I would be the quiet one standing in a group of mothers discussing soccer or Girl Scout meetings. I would be standing there nodding and smiling while thinking of the surgery on Tuesday, the Hematology, PT and Cardiology appointments on Thursday, wondering if the new ooh la la custom made AFO will help me walk without a cane, wishing I had a chance to say good bye to my Dad, hoping my son won't cut himself today...I cannot speak of soccer for the stress I am experiencing silences me and I would rather go to the Dentist than speak about Girl Scout cookies.

How could I speak about cleats when Multiple Sclerosis has disfigured my feet, the new atrophy revealing itself to my damaged eyes almost daily. Where do I mesh and with whom? I feel I have become lost within my own generation, my disabilities and challenges stealing away from me the ability to shoot the shit with other moms, small talk has become a foreign language to me. My children and their disabilities, life threatening medical conditions and puberty all but render my brain stunned and and and and stupid. Some days I can only focus on insulin, and glucose readings. Other days I am struggling to maintain my composure as I try to fit in 4 medical appointments in one afternoon. I cannot think if the TV is on and I forget everything I shouldn't. My brain is like a hard drive that is about to freeze up or crash. 

It is all I can do lately to just "be" me. To eat olives because they make me happy, to skip breakfast because it makes me sick, to come home rather than chat up the other mom's, to take a shower knowing walking up the stairs to do it will render me useless later that day. Change can be such a blessing but the change that occurs with MS is not welcome by me, not at all.

It is difficult to fit in here, in this prosperous community. I write my rent check every month knowing it will leave us short on money for food or other necessary things. I drive my kids to school and park my car among the Mercedes and the Lexus that line the street, feeling out of place but thankful for the car I have. I am in constant conflict, feeling out of place and worthless but also feeling so thankful for the breath in my lungs, the blood in my veins, the inspiration directed by my spirit, the thoughts circulating through my mind and the love I feel so deeply in my soul. I am both negative and positive, sad and happy, thankful and disappointed, scared and excited, humble and jealous. I am a walking talking paradox.


  1. I'm proud to be the first commenter on your blog and so happy to see you again.

    You said it so well without sounding pity-full. I, too, have lately been noticing unwelcome change. Just when I thought I had begun to accept the changes caused by RA, they became compounded by age (40).

    And, yes, small talk is relative.

  2. A lovely email from my friend Vivian @ DanielDoo.

    Wow! I loved your debut entry. While I personally do not have the health issues you do I still totally connect to what you are saying. My oldest does not understand why I do not have any friends outside of this magic box. I find myself in the same place as you, where I can not bring myself to care about the small talk that comes with a relationship with other mothers that do not live in a household filled with chronic illness. Sometimes it is so lonely when I realize that no one understands our foreign language of medical speak. They do not know my fear or understand my life. Every time I encounter someone in our community it is always the same, it starts with, "You look so tired" followed by that look of puzzlement because I am a stay at home mom, how could I possibly be tired. I feel really blessed to know you. I remind myself that everyone has a cross to bear, we all have things in our lives to deal with, but I sure do not understand why if that is true there is not more compassion and understanding in the world.

    Your family is never far from my thoughts. Congrats on finding a new place to express yourself, it is both necessary and beneficial.

    Big hugs!!


  3. Now that I've found the time to explore your new home, I am humbled by your beginnings here. Your strength has always amazed me and continues to.

    I hope that you find this expression cathartic and that indulging in the chit-chat with fellow chronic illness folk is refreshing. In this one piece, I have learned even more about your abilities and family challenged.

    I'm blessed to call you a friend. Welcome back.

  4. You express yourself very well, life is filled with challenges.