Running Away (From Feb. 17, 2011)

You can run away from many things: people, places situations. But, one thing you can’t run away from is yourself. I admit, in a way, I’ve run away from home. I love my family and my children are my life. I have four good men going out into the world, anything else life gives me is icing on the cake and the cherry on top. I was not so naive to think that I would go to the other side of the world and life would instantly sort itself out, that I’d be cured and there’d be the fairytale ending. I just knew that I was suffocating under the stress of functioning in my daily life. Just being on ‘vacation’ my cognition and memory and body are not quite so challenged. I have no one else’s schedule I have to keep up with. No appointments to remember, no school forms to fill out or bills to pay. Okay, that’s not true. I do have to do the FAFSA form and the College Board financial aid forms for Alessio’s financial aid. Given what my specific deficits are, I’d rather pull my eyeball’s out of my head. That’s not far from what it feels like when I’m struggling to do the numbers. But that aside I have left the day-to-day pressure behind and during the week I’m here in the flat alone, free to do what I want. Here’s the kicker, I still had a bad morning. I’m paying today for playing last night. Elizabeth and I just went out to dinner with a couple of friends, but in spite of Provigil (or as I like to call it, “crack”) and two strong cups of coffee, I can’t pull it together. I can’t even get my brain to decide to do yoga, write, go do laps in the pool or go back to bed.

At home I feel like the rest of the world is on a merry-go-round that is going around and around at top speed, and I’m running alongside trying to hop on. Sometimes I make it and am able to grab on. With a grip for dear life, I find a balance that keeps me on the ride with everyone else for a turn or two only to just get flung off. Then I pick myself up, tend my wounds and I’m at it once again. I’m just trying to keep up. That’s not even keeping in mind the cognition issue. At school functions, or at the soccer field I can’t remember parents who I’ve met many times, I can’t pull up words when I speaking which causes a vicious cycle of the listener getting impatient, me getting flustered, my mind going completely blank and then it’s downhill from there. I go into what’s called ‘cognitive fatigue’. That’s when people with M.S. cognitive impairment get cognitively overloaded, fatigue and meltdown, not only with mental tasks but physically as well. My vision gets worse, my balance goes and those damn tremors kick up into high gear. It’s usually at that point that I go down.

Here, I can avoid that without a lot of fanfare by just avoiding situations that exacerbate my symptoms. I was at Elizabeth’s school yesterday for a Chinese New Year Celebration (yes it’s still going on). The people, the noise, the heat–I was going down and it was going to be a hard one. But the beauty is that Elizabeth, with the little time she’s spent with me in the years since I’ve been diagnosed, sensed that I was struggling. The smile never left either of our faces but said some goodbyes and slipped out. Well I peg-legged it out. We went to Zaidah’s which is right across the street. Her flat is so soothing. Some A.C., a cozy couch, legs up, water and one of Zaidah’s famous coffees and my body thanked me for it by relaxing to where I was out of that unpredictable scary red zone. I was able to go to dinner later and have a nice time. Sure at times my legs were a little dodgy, threatening to give, but it’s a small price to pay.

If I fall I fall. There’s nothing I can do. I’ve already fallen in some of the most spectacularly embarrassing situations. My husband, Frank, had a big job doing all the electrical work in a huge indoor sports center in town. It was a great job, with great people. When it was complete we were invited to a Halloween party there. Frank went in and right away of course there were lots of people for him to talk to. However, people were talking to me who I had no recollection of ever meeting. The costumes didn’t help to jog my memory either. There were lots of people, lots of noise, kids running around bumping into me. It was a recipe for disaster. At some point when I finally was able to catch up with Frank, he touched my back in a way that is always the final straw. My nerves go into overload from my head to my toes. My spinal cord feels like someone plugged it into a high voltage outlet. The floor flipped up over my head and the next thing I knew I was down. Let me tell you, I’ve dealt with walking with a cane for years, being in and out of a wheelchair, but the humiliation of falling is a unique one. My body then went into such violent, convulsive tremors that my whole body went into spasms. Even my diaphram was not cooperating with giving me the breath that I needed. I was surrounded by strangers buzzing about hovering over me in a chaotic circle no one knowing what to do. There’s a place you go when you, quite literally, crash. It’s like an out of body experience. You almost become an observer of the absurd scene, thinking this would be really funny if I could at least breathe, or if it wasn’t me on the floor.

I tried to not let the tears erupt, but I was not the boss of my body in that moment. I felt like there was literally a thread holding me from falling even further into myself, when someone embraced me. It was a warm, comforting, gentle bear hug. I had no idea who it was, but in a soothing voice he just told me, it’s okay, just breath slowly, it’s okay. He helped me into a chair. I still don’t know how because my body was stiff as a board. But he never loosened his embrace. I buried my face in his neck now crying as much as my spastic diaghram would allow, repeating over and over again, I’m sorry, I’m so sorry, I’m sorry... His comforting words, and his protective comforting embrace enveloped me and I just wanted to stay there–hide there–forever. As I willed my body to relax enough so I could breathe, I stayed there. I didn’t know who this guy was, and I didn’t care. I was staying there and I knew by his nurturing, knowing hold that he would stay there too as long as I needed him to. I became more aware of the chatter around me and I heard someone refer to my rescuer as Mark. Mark is the owner of the arena. I hadn’t met him yet and Frank wanted me to meet him. In fact the only reason I went was because it was a client’s affair. So now it’s occurring to me that this is that Mark. When things are shitty, how much worse can it get? Besides, whoever he was, we bonded with that hug. With all this going on, and with tears still pouring out of my eyes and into his neck, I sobbed, are you...(sniff sniff)... are you...(sniff)...Mark? His body perked up, and although I couldn’t see his face with my face buried in his neck and all, I felt the big smile as he replied, why yes I am. In between sobs I said, nice to meet...(sniff) ...you. We had a whole conversation that way, about how I did ads for his wine import business when I was art director for a magazine that he advertised in.

No one else even paid attention to this scene and I was glad for once to be invisible and just have this comforting, albeit drama packed, hilarious moment with Mark. When I finally allowed him to let go of me, I saw him deep in conversation with Frank. Periodically they glanced over at me sitting in the same chair, still wracked with tremors, and trying to carry on conversations with people I don’t know. But I had a smile on my face, albeit a crooked one, for the right side of my face was drooping. When I was put out of my misery and we left, Frank told me that Mark told him that he had been married before and his first wife died of cancer. It all made sense: the knowing, gentle hug–the understanding.

I’m not going to lie. I was pissed at Frank. This is not the first time that he left me in a situation that was laden with mines that trigger a physical collapse. And in spite of my constant tutelage, he still hasn’t mastered that there are certain angles that are in my blind spot and an unexpected touch shocks my body into an intense, neurologic confusion. I know that no one can know what to do all the time. I’ve been both the patient and the caregiver. It’s not easy on either side. My anger at him is really anger at myself that I will be, at best, high maintenance for the rest of my life. I’ve been told it’s all about me. Well it’s not. But if I were blind wouldn’t there be certain precautions that people would take, like not leaving things in my path so I trip? Leading and leaving me in places that I’m unfamiliar with and full of stimuli is like not very unlike strewing objects in a blind persons path. It's a recipe for disaster. An M.S. patient needs to manage stimuli. Even some predictable order in the home is important, because even something as simple as trying to find scissors that aren’t where they should be can rev up confusion and go into cognitive fatigue. I need to be able to rest before I collapse. I need to have quiet sometimes. Most of all I just need to not feel guilty for having M.S. I didn’t ask for this. I’ve even told Frank if he wants out because it’s too much, I would understand. He didn’t ask for this and he has a choice. It wouldn’t be fair to him.

So yes, I ran away. I ran (and it was doctor’s orders) from the stress. I ran away from the constant guilt, and the constant demand of my memory. I ran away from mustering up the energy to put out the biggest 'fire' burning in the household only to collapse until the next 'fire' rages. I was caught in a vicious cycle that was becoming a downward spiral. I admit it. I ran. But I also ran to something. I ran to nurturing myself, to seeing who I really am, because I’ve forgotten. I ran to the time and distance I need to sort out how I can manage the merry-go-round. without losing myself in the process. I didn’t run away to Malaysia, I ran to me.