Mourning the Death of Me

Femme aux Bras Croisés by Pablo Picasso

It’s morning and I just rolled out of bed.  Rolled – not as a figure of speech but literally due to my MG symptoms.  My mornings are the worst as I feel I’m a platter of vegetables. Later on my symptoms improve with medication but it’s not the ‘real me’ anymore. I have good days and bad days, and I can’t help to have my mind wonder off and think about all the things I am giving up compared to all the things I wanted to achieve in my life now and in the future.  

I am mourning the death of me.  This is similar to the type of loss we feel when our loved one dies.  The diagnosis was devastating, although it came as a sense of relief, the relief quickly faded and in it’s place came grief – grief for my old self.  In it’s typical 5 stages (denial, anger, bargaining, depression, integration), I am still floating in and out of all of them.  I guess I still want the ‘real me’.  Which is really the ‘old me’ and no longer the ‘real me’ because the ‘real me’ has MG and needs to move on and reshape her life. How do people reshape their life?  Suddenly and by force, not by choice!  Oh yes, bring in the strength and courage and be done with it.  HA! What strength? And courage? – well that’s not around here lately as well…  

I build up a great life for me – up until 2 years ago.  I did things BY THE BOOK!  Education, Career, Marriage and Baby.  I crossed my T’s and dotted my I’s carefully, thoughtfully, always planning ahead. I knew that life was about CHOICES – and choices had their consequences.  If you made the wrong choice it would creep up on you and the hard work you put into something could be destroyed.  So my career and love life flourished, which followed happily with family planning. I anticipated a small step back with the business and socializing as my motherhood days rolled about. But, I didn’t anticipate a full blown catastrophe to my career and my future plans.  

With our design company deepening it’s roots and we were outsourcing for freelancers.  I had taken my life long hobby, which is photography, much more seriously.  I had the passion and talent and was eager to finish my portfolio and book new clients.  I was so ready and anxious and I was yearning for more interaction with people.  Fast forward a few months – I get mysterious symptoms.  I can’t eat, can’t speak, I’m on an emotional roller-coaster – depression creeps up.  Oh it must be the baby blues…  No, it went on, got worse.  15 months later I was finally diagnosed.  4 months after that, I’m still wobbling between Denial and Anger.  Mostly scared about my future.  I feel like my life is over.  And it was supposed to be just the beginning.  At 28, I’m a mom of a 2 year old who will want to go bike riding, skating and do many other physical activities that I won’t be able to do. And did I mention I can’t lift the camera any longer…

I know that amongst my grieving I need to focus and stay positive.  I need to evaluate what is left, and be determined to do the best I can with what I have. I need to replace my old dreams with new ones. I need to reevaluate my life and possibly discover opportunities I have never dreamed of before. I know I can cope either Positively or Negatively – thinking negatively seems always easier and comes naturally.  But positive thinking helps to reduce anxiety and stress, brings peace of mind and a chance at a more rewarding future.

I hope this blog will serve as Myasthenia Gravis awareness.(MG information for Canadians)  And for individuals coping with MG or any other illness or life changing experience, or if you just have some advice or tips on how to move forward, I would love to hear from you.

– Ella