The Apparent Doppleganger of Maximus Decimus Meridius

"You have an obligation to them. You can't just stop writing. You started it and you have to finish it." Carmelo said it matter-of-factly.
No sugar coating. That is usually the start of many of our arguments. I need an inflection of sweetness to stop me from feeling offended. As a man, he doesn't usually get that. He is a Virgo who leans more toward Libra-like Jason; everything needs to remain balanced and fair.


I just stared ahead - watching the sleet and rain hit the windshield and get swiped away quickly by the wipers on the maniacal setting. Cubby and whatever that other girl's name is were talking about Justin Beiber on the radio and I was sitting there sensitive to Carmelo's words trying to drown them out by paying attention to anything else. I heard him. And I know. And I wanted to tell him why I haven't written on the blog - but the words got in the way. They lined up in front of my emotions and like a Black Friday Sale they just smashed and jumbled and cascaded through each other to the point where they couldn't come and so I just cried. I cried so much I could barely see and I just focused on the fact that the RFK is a straight bridge and if I just pay attention to 10 and 2 I wont kill us both. The words are locked up. I finally understand what Jason meant. They are in my head, running around and chasing each other and tumbling over each other but they won't come to my lips or drop from my fingertips. I know I have obligations - but I can't force what doesn't want to come. Everyone with their healthy kids, and their normal lives and their curiosity and genuine concern, like me, has to wait - and know that something will come - eventually, you just have to be patient.


Jason has made progress. So much so that the doctors are happy and the therapist speak to me enthusiastically and in very hurried tones. Their eyes bright with promise and their voices gleefully expressive as they explained what they expected and what he has surpassed. Although they are so excited - I am selfish. What excites them - excited me when Jason was months old. To muster up the enthusiasm to be excited again 18 years later is difficult for me. And I am afraid. I am afraid to say that out loud because I don't want God to hear that and snatch back what he has healed because I am being ungrateful. I am so very grateful. But I am also selfish - I want more. I want dialogue, I want full coherency - I want the boy I raised the last 18 years.


I go everyday. No longer with the luxury to live there with him where he is. It kills me. Slowly every day a piece of me dies that won't come back and that is one of the ways this whole situation will leave me in the end. Forever changed and never the same. The worry chips away at me with the crackle of lead paint chips. Every day I fight with myself and time concerned for what happens if someone misses something? What happens if something I could of picked up on but haven't because I am not there makes all the difference in the world?  I'm a pretty seasoned gladiator apparently - because I am called to arms for other things even in this time of crisis. I have obligations, and situations and my real life came barreling at me like a freight train. There are utilities to pay, and other kids with medical needs, and baby mama drama to deal with. There are bi-polar grandparents and hoarding grandmothers and ailments that need attention as well. 


"You have to find balance, and you have to take care of you." Dr. Silverman said, as kindly as she could, meaning every word. I heard her. Like I heard Carmelo. I just can't listen.


The essence of "me" is laying in a hospital bed, making progress in therapy that everyone is willing to slow time for and accept in a slow pace while this shell of a person I have become is being forced to function in real time. How do you find that balance and MEAN it? I faked it. I went through my script of sedatives like M&M's and now I am au natural again and I can't "fake it" anymore. Now everyone anticipates that I function. Normally. Getting over what has already happened and accepting what is to come. Now I have to put on my armor and do what everyone has known me to do best. I have to keep on keeping on because that is what I do.


I wonder if it is somehow like Gladiator. If God gives me a number of tools and watches what I do with them. Feeling pride when I succeed, amusement in some of the ways I go about things and disappointment when I fail. I wonder if the testing is done, or if I am still gearing up for some huge final. I don't like thinking that much. I don't like imagining my life is playing out in a huge arena for eyes to watch and judge - but in a way through this blog that is exactly what is happening.


Maybe in a small way - this is sort of like gladiator? Where I have had all these little battles and victories to season me and keep me agile. I have shown I am an amazingly convincing Commander under crisis. I am the General you want on the battlefield as now I am sought out for medical advice. I'm not done yet. I know that. I need to put back on my armor - there are apparently even more battles to come.


I feel like Maximus; being forced into battle when all I want to do is go home, and live a simple life with my family.

The Secret

They mentioned it last week but I told them to stop. I am afraid to hope because this disease sends a band of marauders to kill my dreams as it leaves my lips. Last week I purchased my $235 monthly hospital parking pass and (fought with the snotty cashier who tried to tell me my new purchase was expired because she didn't realize we aren't in January yet), and I took Jason's stuff home preparing for another month at Columbia. The last time they said I would be leaving the hospital something happened, several something's and then I didn't leave. But yesterday at 9AM under a clear blue sky like I asked, Freddy Kreuger left  Jason and I alone for a minute and I got the call that Jason was going to be transported via ambulance from Columbia to Rehab.

I have seen when people leave and it always seemed sad. Even if in reality they were headed to a better place, just seeing people in beds, their eyes peeking through hospital blankets with a swatch of speckled hospital gown looking afraid or disoriented makes you pity them. I didn't want Jason pitied. I dressed him in his own clothes: grey sweatpants, grey shirt and grey beanie. I couldn't let him be marched out the front door in a hospital gown and blanket. I needed everyone who saw him for the 5 seconds he hit the streets to know he is loved, he is cared for and he has a mother. I did not get excited the entire way there because I was waiting for the other shoe to drop. But it didn't. 

In fact, the strangest thing happened. We were both washed over with a sense of calm. When we arrived The ambulance doors were opened and huge green elephants greeted us with the scent of freshly cut grass. The sunlight reflected off the green and on both I and Jason who suddenly closed his eyes and relaxed. There was peace and tranquility here, and it reflected off of everything. The flowers and walkway, all pristinely kept, led to a glass hallway with larger than life nutcrackers saluting us in brightly colored uniforms as we passed them by. 

The hallways are bathed in colors, the children some in wheelchairs were smiling and laughing and giving a sense of life to a place built to deal with so much obstacle that there should be no room for joy-yet there is. It helped me to accept that this was the place for Jason. Home is the only place he should be, but in this case-I am okay with where he is. 

I met my new team and they are an amazing bunch of people. No more white coat scientist in classroom style huddles asking me redundant questions. These are actual people who react and have emotion and who want to give Jason the joy this place seems to project. I speak directly to them, and them to me.

No more nurse practitioners who give sub-par care and attending doctors avoiding to speak to me. (I will deal with them later.)

I left Jason asleep, for the first time in days in his new private bedroom with his new caregivers and I came home for the night. I didn't have a panic attack when I left. I didn't need any meds. Exactly two months tomorrow since this began and Jason is on the road to recovery. Bless the hands of those who care for him. Thank you for their wisdom and patience.

God's got this. In God I trust and I do not fear.

Amen