Friday, November 20, 2009

Finding the words on Jon Stewart

I've tossed around ideas for a post about Thankfulness. Not the easiest concept to put into words with originality or sincerity. A top 10 list would obviously include family, friends, a roof, breakfast; subtler things like breath, and cellular structure, and the wonder of new born life are infinitely more complex and seem to defy definition. So, at 6:30am, with drenching rain outside my window, a bowl of oatmeal in my lap, and the Jon Stewart show playing on my laptop: out of nowhere comes an unexpected gift. For those who don't watch his show, it is usually 30 minutes of jokes and commentary on modern American life. A welcome respite, but not the expected source for tears of gratitude and, finally, a way to express that thankfulness and gratitude are choices that we make.
Today, on the show, his guests were two guys who form the musical group Jack's Mannequin. The lead singer survived leukemia and has just released an album that he wrote during his struggle.

 My thanksgiving thoughts are eloquently and powerfully shared in these two songs. Below are the links to the videos on Youtube. Turn on your speakers and take a few minutes to listen. I still have tears in my eyes.

Saturday, November 14, 2009

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! 

Thursday, November 12, 2009

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.....

Wednesday, November 4, 2009

Inspiration from the Smallest of People

My world is fairly ordered and routine. Saturday afternoon my niece and her just turned, three-year old son came to visit and ended up spending the night. My own son is almost 19 and is away at college on the east coast, so sharing our quiet house with this young boy was a real eye opener. Now, if I could just learn to live my own life like he lives his.
He throws himself full throttle into the simpleness of his life. It isn't like he is out running a corporation or balancing a checkbook. Yet, the pure pleasure he receives from driving a miniature bobcat bulldozer up and down my leg and his peals of laughter as he sends it crashing off my hip, show his zest for life. This reminds me that I can experience pleasure in the everyday sameness and minutiae that are hallmarks of a life spent at home. When was the last time I was truly enthralled and finding joy in some simple aspect of my day? 
When his 'apple cart' tipped over, everyone knew he was upset. But, the storm of crying and yelling and carrying on was quickly over. He is like a summer day in Oregon, sunny then rain with an occasional thunderstorm. His ability to openly express sadness, anger, and pain and then move on was admirable. I often stew and fuss and carry on over the smallest upsets in life-a rude clerk on the phone; a stubbed toe; or medical bill. Maybe I should be throwing one big tantrum and then let it go. 
From the day he was born his mom and family have met his every need. You can see how well cared for he is in the confidence he has that loving hands will always be there. He is at the age of starting to separate from his mom and explore outside of the baby comfort zone. I would like to bathe in that same warm sea of confidently knowing that my needs will be met. To turn off the worrying litany that runs like a marquee banner through my mind. In my day to day life I am fortunate to have many people in my world--so many people who love and care for me. It is spiritually that I need to be reminded that God is present and He cares for me more than I can know.
He played hard all afternoon. Skipping his nap due to all the excitement of exploring a new place, new people, a patient dog, and to top it off--his first trick or treating. We went for a short walk and he was entranced with finding out that acorns have hats. Every mushroom we encountered he mashed with glee. He delighted in the giant blow up costumed Winnie the Pooh around the corner. All of this adventure and excitement led to one tired and grumpy boy and one frazzled mom. And then, it got quiet, his eyes drooped, and just like that he was asleep-sitting up and leaning against the couch pillow with his arms crossed behind his head. Looking more like a movie star sunning beside a pool than the cranky little man he was a few moments before. I wish I could sleep like that. Just fold up my troubles and slide into rest.

I remember reading, when my son was a toddler, that a top-notch triathlete tried to follow a 3-yr old throughout the day--walk, bend, sit, sleep at the same pace--and the athlete couldn't do it. My great-nephew loved to climb on my wheelchair and leap off it onto the couch with great abandon. He seemed to effortlessly understand my limitations. I was laying down at one point and he quietly came into the room and stood at the end of my bed. I asked him what he was up to and he held up his arms and said, "I came to kiss you." And he did. 
Having my great nephew here certainly stirred things up. Our house seems a little too empty since he left. I hope he and his mom come back soon.