Of life before and after the twins...

After my previous post where I said, " I sat down to write this more out of obligation, " I received an email from a dear friend who I've known for over 20 years. She asked me to explain who and what I feel obligated to. This question is a fair one. I will do my best to explain something that I don't necessarily have the words for. Obligation and Guilt are inter related and the cojoined evil twin emotions of Envy and Jealousy, (that I wrote about previously.)
In some twisted way I would rather have taken a bad dive into a shallow swimming pool and come out a quad on a ventilator. I would have a fixed point that I could refer to as when everything changed. A fixed event in time that could serve as the moment my life detoured. And, from that fixed moment, have a defined reality and choose to build a life from there....or not. I would have to decide to live with the shattered dreams and somehow accept this new body, this new way of being.
MS is a different kettle of fish. My hand therapist and I were discussing my oddball hand tremors and arm jerks. I told her that my neurologist asked me why my hands were doing this--as if I were the expert. My hand OT said that every MS patient she sees has a different set of symptoms, a different level of disability, and, I infer, a different experience of life with MS. This illness doesn't hold to a recognizable set of milestones. 'yes, Janine, we're sorry to say you have MS and within 5-months this will happen, and we can use this treatment, and odds are your life will be like this.' I live in the land of uncertain, unknown, and undefined.
How then do Obligation and Guilt have a ticket to the dance? Envy is my longing for something I have lost; Jealousy is a dark heartbeat that desires what someone else has; Obligation is my desire to be the wife, mother, daughter, friend that I long to be and can no longer rely on to do her part; and guilt is my grief and sadness over what MS has stolen from me.
No one in my circle wants to flat out say it. So I will. This disease has fundamentally altered all of our shared dreams and expectations. Most of my circle knew me 'before' and that life long intimacy leads to certain expectations. I am sure my parents and brother never thought that this MS-centric reality is where we would be back when I was a little girl tramping around on back country trails. Or, when my hubbie and I first danced late into the night 23 years ago,  that we wouldn't still be dancing now.
This wicked twist of fate spins into Obligation and Guilt. Obligation (and desire) to be able to live what should have been my life--Be the wife, mother, daughter, friend that I wanted to be. And, Guilt for the altered shared reality with those whom I love. It isn't easy to have MS nor is it easy to share the life of someone who does. 
And so, all knotted up together in a giant rubber band ball are the complex emotions of envy, jealousy, obligation, and guilt. For who I long to be, and am slowly, steadily, and relentlessly, losing.
I am deeply grateful to all of you who are willing to be a part of this journey. I don't think I would make it without the amazing people who have chosen to have MS with me. Thank You! 

Announcing New MS Geography Club

I sat down to write this more out of obligation than a burning desire to share any news. Maybe I should found a new MS organization called something like the Flat Earth Association for MS (FEAMS). Have I finally gone over the edge and lost my mind? Probably. What I mean is MS is a great leveler--not in terms of something that puts people at an equal standing, but more a steady, slow-moving bull-dozer that is relentlessly flattening my world.

I've been concerned that my posts are too depressing lately. I am selfishly writing this as a creative outlet for me to explore and explain my world. If I censor my words to appear as one of the 'shiny happy people' I lose my authentic voice. These past few weeks have been grim and so has my outlook. So all I can say is that those of you who read my blog will have to hang in there with me as I work my way through this. 

As the founder and only card carrying member of FEAMS, I embrace the belief that the earth is flat and, yes, I may have gone over the edge. I just don't seem to be able to channel Columbus's energy and drive to sail off into the unknown and "boldly go." I've been fighting this illness, the medical establishment, and loss after loss for 10+-years and I am tired.

I think the next phase for me is to start to accept and embrace where I am now. Take the upcoming holiday season, for example.  I let go of any Martha Stewart-esque fantasy long ago. This year I have finally found the voice to say that I just can't do it any more. The 'it' being the last few things I still clung too: mostly logistical support for my already over-committed hubbie. In our 23 year partnership I have always joyfully played the role of social secretary and general cheerleader. This year, I've asked my family to coordinate all details with him. This is the final letting go of a role I no longer can play. Sigh.....