Thursday, 17 June 2010

So Many Thoughts, So Little Time...

I was driving home from work, passed through a work zone that has been a work zone for a couple of years, where I never see any workmen... and I thought, "this must be a union job."

Too much time is spent on the road. It's not me, really. I don't have a crazy commute. I go from one county to another. I drive though... let's see... Parsippany, Whippany, Florham Park, Summit and Springfield. It's an 18-mile trip on highways. The only local driving is about a mile and a half through Springfield, and the five minutes getting out of Parsippany and the 15 minutes getting in. Amazing what the time of day can do.

I also don't take 287 North home, as I am adverse to sitting in traffic. I take exit 2 off Route 24, hop on Whippany Road, to Parsippany Road to Reynolds Avenue to South Beverwyck, which once across Route 46 becomes North Beverwyck and then after the light turn onto the little road and I'm home. Awesome.

But how many people go into New York? Drive to a park-and-ride, sit on a bus for an hour, take the train into the city, then be tortured on the subway system. I used to think all subway systems were gross - urine and feces and rat infested. Once I traveled to London, Washington, D.C., Boston and other cities with an underground, it seems only the New York subway is disgusting. Oh, the irony.

Yesterday I drove to Beacon Hill for a seminar. It was a good trip, about an hour and five minutes south. I was just a mile or so from the ocean. A pity I did not make time to go dip my toes in it, but I'd no idea where Beacon Hill is and I left too late to do it.

It was a fun but uncomfortable evening. While we were sitting in the early part of the seminar, my nose begins to run and my eyes start to water. I'm sitting there suddenly SOOOOO self-conscious that I look like someone turned a faucet on my face. Ummm... where can I go? What do I do? I sat there. And at some point the eyes finally cleared up. (The nose ran the whole time... yikes.) At some point, I realised that no one is noticing, no one is staring, no one knows. I'm just another person sitting there in a room with 25 of us. What a revelation.

The presentation ended at 1830, and I was shaking. I'm used to eating every four hours and I was two and a half hours past that. I was also freezing my butt off (my doctor said that losing a lot of weight has that effect - a lot of the insulation is gone). And of course, the uncomfortable thing... a neurological disease that is noticeable now. I wanna be normal. But my muscles will start to spasm everywhere after too much time and not being able to take my medicine.

I can't take it on an empty stomach.

I'll be more prepared the next time. I'll know what to bring and when to eat and how to more effectively schedule my eating to take the medicine in time to avoid looking weird - or just thinking I look weird. It's so hard to tell. How much of our appearance is what we think and what we perceive others thinking.

Once I ate, I felt a lot better. And I spoke to wonderful people and had a lot of fun. But it was hard, too. I don't want to worry and wonder what others see me as - or to be seen as disabled. I tell myself that it's okay and so many people have conditions, disabilities, whatever, but I don't know it's okay for me to be that way. Or at least I'm not used to it. I suppose this is all part of the learning process.

I did leave when I realised I've got almost two hours of driving ahead of me and I'm tired. I was in my office at 06:45 and it's now so late that I'm normally in bed. Or heading to it. Ye gods!

On my way to the car, I was talking to one of the other attendees, and my nose began to run all over again and my eyes began to water again. I was miles away when I realised it's my allergies. Allergies! I had not thought of it. It's been a long time since I had an allergy attack. In the spring and autumn I take Allegra-D, so nothing happens. In the summer and winter, I have regular allergies to dust and mold but unless I encounter horses or stick my face in a long-haired rabbits (don't ask), I rarely have a severe allergy attack.

I could not tell you what set the allergies off, but something did. If I had a cold, I would not have felt perfectly fine other than a runny nose and itchy, tearing eyes. And the gentleman I was talking to was mystified. So was I until I realised what was going on. He was really nice, though - told me not to drive until I could see.

It was 20:45 when I was sitting in my car wondering why I'm so tired. Yes, I know. It's June. The days are loooooong. I know what time the sun sets. But I was completely shocked at the time. On the other hand, do you know how nice it is to talk to others who do what you do? Who understand the weirdness, the frustrations and successes, the hours, the wondering... and in this industry, unlike pharmaceuticals and high-end technology, we all talk to each other, share information - it's really great! None of this you-can't-talk-to-anyone-else-because-this-is-all-top-secret-espionage mentality. I so don't miss that.

So it is getting dark as I'm driving in a strange area that I don't know. This is not my comfort zone. I can drive in the dark and I do all the time in the ambulance but this is my town and I know more of the roads here than anywhere else. Down by the ocean I know nothing. I managed to get on Route 35 - which really isn't a "route", it's just a local road with a number assigned to it - and then onto the Garden State Parkway. This is really not my comfort zone.

And did you think that would be my only problem? Oh, nooooo. I'm on the Parkway, and the navigator, clearly programmed in California (it tells me to get on the freeway... no one in New Jersey calls large, many-laned roads "freeways" - and the Garden State Parkway isn't free! It's a toll road!), has some funny ideas about getting to Parsippany. I'm driving when I start to get that twinge... that little reminder from my bladder that going through two bottles and several glasses of water and eating a little too much sugar - is not going to last without emptying things. And my bladder was not the only thing jumping into that act.

I was looking at the navigator, thinking about the amount of miles - 45 - and minutes - 54 to get home. I know I can't make it. I'm hoping I can, but I know I can't.

Fifteen or twenty minutes later, I see a sign that reads Westfield. Hmmmm. Here to exiting Garden State Parkway going to Parsippany... 13 miles. Here to exiting Garden State Parkway going to Springfield... 5 miles. I changed the route.

By the time I turned onto the last road, I was BOUNCING in the seat. You can't imagine how much I loved the sight of that building. It's amazing what physical need can do. Who knew that simplest physical act could feel so good! What relief.

I was hurting all over - neck, back, empty stomach - but none of that mattered after dumping the excess water and baggage and feeling twenty pounds lighter. I felt wonderful! Sometimes one needs that slap in the face of realising the little things (ha, ha) in life are really the BIG things.

I got home at 22:15. I've never been so tired.

And as I drove home, I was singing to the music and as usual, thinking. Always thinking. I never stop thinking. It's a little annoying really - I can't see straight sometimes with all the stuff racing through my brain. I can't sleep without help because of that and the muscle stuff (a double whammy). Always racing!

What did I think about? I wish I knew. The fun part is the brain like a sieve. It drives Luis crazy. It drives me more crazy. He's frustrated? I have to live with this brain all the time! All the time. This is my life all the time. Luis needs to realise how much more this sucks for me than for him. He's mostly normal, other than being fat as a cello (instead of fit as a fiddle). I have all sorts of shit going on. Ignore the muscular dystrophy; I have tinnitus about 90% of the time. I have a tight neck all the time. I have no memory. Long term, yes; short term, none. I can't sleep at all without medicine. I can't have any quality of life without medication.

At least with SOMEthing I can have quality of life. I like to look on the positive side. It's usually easy to be positive, but lately it's been more and more of an effort. I have to wonder how much I'm damaging my liver or shortening my life. However, I never used any pharmaceuticals until I had my accident in 2001 and then nothing again until around 2005. And I have never, ever been a drinker and still aren't. I know too many alcoholics who live to ripe old ages. My liver owes me at this point. So I worry less.

Ten minutes and counting until I can take medication to sleep. Welcome to my world.

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