Don’t Put Off To Tomorrow, What You Can Do Today!

I almost can’t help myself, I’ve been living this way for so long; funny thing is that until only recently I thought everyone lived this way. I was talking to a friend of mine about all the things I’ve been doing…this is a long list of things, partially because of habit (I’ve always been a person who feels best when I’m doing a lot of things), and partially because I’m a person who has NOT always been able to do the things I want to do when I want to do them…not everyone gets to know that experience. I admit it’s overwhelming at times, even brings me to tears, because I don’t know at what point I may not have the energy I need to do what I want to do, and that can be exhausting. It’s not that I don’t think if I were to put things off until tomorrow I wouldn’t be here to do them, it’s just that I do know that it’s certainly a possibility.

My friend said to me, as any friend would say to their friend in tears “why don’t you relax, take it easy, you can do it later, tomorrow, the next day?” This is something that someone like myself doesn’t ever really think of because my rest(s) have come when I’m not the one choosing them-to me they seem to come when my doctors have chosen them- they have come out of necessity. I feel this want-this need even, to take supreme advantage of the time that I CAN be a doer, even if it can sometimes be a bit of struggle to do what I can physically do-because I know all too well what it feels like not to be able to do what you’d like to do when you’d like to do it. This knowledge is…what do they say “both a blessing and a curse”. However, it’s my feeling that this bit of knowledge isn’t such a bad thing for everyone to keep in mind.

So as you’re thinking of that, think of some of these things, think about the people you haven’t reached out to, that you want to-but haven’t, the art class you may want to take, but don’t think you have time to take, the old storage container that needs to be cleared out because you’re sure that the something you’ve needed or wanted to have is inside it, but you haven’t had the time to look in it…for 3 years, the promises you’ve made, but haven’t kept, the calls you need to make. The cavity you need to fill before it becomes a root canal, the doctor’s appointment you’ve been meaning to make. Think about who you’ve been meaning to thank. Who do you want to say I love you to? There are always going to be things that I don’t get to, but I try. I have a list…and of course there are priorities, there are only so many hours in a day, I know that, but I remember the things I can’t get to because I write them down on the list. If you have to put off to tomorrow, what you can’t do today…write it down on your list so you can remember those things tomorrow. Today is a good day to start.

I'm Walking, Yes Indeed I'm Walking

So next October 1st, it’s my hope should all things go right (this is no small task), that it’ll be the first day I will be on the road to Boston. My plan is to walk 10 miles a day, the trip is about 300 miles long…it’s shorter if I’m driving, the trip is longer because I’ll be going through individual neighborhoods. When I drove the trip every week in 2008 for radiation treatment, it was about 218 miles-but that trip was very direct. It’s my hope that by taking the long way, and going through neighborhoods I’ll be able to be more visible and in touch with people and communities, giving me the greater ability to make them aware of Brain Matters…again we’re talking hopes…

It’s funny to think that on the first day I will walk 10 miles, and at the end of that day I will only be 10 miles away from my house-I’ll probably just take a car back and come home…may even do this the first few days, until it just doesn’t make sense to do so…but I’m just thinking out loud, everything is still so much in the planning stage…the hoping stage.

As of today, it’s October 11th, I’m walking 4 miles a day a few times a week…I’m in the building stage, this is the most amount of exercise I’ve had in a while. When I’m walking, I’m imagining myself a year from now, what it will be like; I’m also dreaming about all that I want to make happen between now and then. As of now, I walk when it’s raining, because I know I will have to walk when it’s raining. I walk when it’s cold because I know I will have to walk when it’s cold. When I’m walking, I notice the changing of the leaves and I think, “that will look so good on film” (because a group of my friends and I plan on filming this all for a documentary), and it will be so beautiful to see this all as I walk from here to New England. I think to myself should everything go according to plan I will arrive in Boston just around Halloween next year, but I’m purposely choosing not to arrive on that day because that could be a crazy day to arrive; I’m choosing instead to arrive a day or even a couple days later, as long as it’s before the clocks get moved forward on November 6th, and as long as it’s on a weekday.

I’m walking, I’m dreaming, I’m imagining, I’m hoping…yes indeed I’m walking.

It’s Not Called Dun-Rite Cleaners for Nothing

So yesterday I was passing through the neighborhood I used to live in about seven years ago…it’s not far from where I live now...about fifteen minutes away-I was on my way to some other place, but I had a few things with me that needed to be dropped off at a Cleaners. One usually stays totally local with these things, but that’s more habit than anything else; I don’t love the Cleaners I go to now, I just use it because it’s within a couple of blocks of where I live. So back to my story…I saw the Cleaners I used to go to when I lived here…seemed like a “no brainer” (no pun intended), I would just drop my things here. I parked the car, went inside, and was greeted by the same woman who had always been there, and she said, “How have you been? I haven’t seen you in a long time.” I said, “You have a terrific memory! I moved, I haven’t been to this Cleaners in about seven years, but I was driving through the neighborhood and decided to drop these things off”. She asked how my daughters were, and I told her one was 21 and the other 14…she couldn’t believe it. She let me know my things would be ready on Thursday. She then told me what made me think that not only had Dun-Rite Cleaners named themselves appropriately for their expertise in dry cleaning, but in how they handle their customers as well…she said “It was great to see you, you look the same!” I like this place, made me wonder about what other things I might have at home that need dry cleaning.

A Day We'll Always Remember

These days I almost never watch TV, don’t know why…not enough time, not much I want to see, my eyesight makes it so that it’s harder to see…but for some strange reason on this Saturday morning (forgetting that it was September 11th), I turned on the TV at 9A, only to see that it was the beginning of the September 11th Memorial…the reading of all those names, I turned on the TV just before they rang the bell to signify the crashing of the second plane into the World Trade Center at 9:03A, the plane that made us all know that it was no accident that the first plane had crashed, and that that day would never be like any other day. I remember that on that day I was sitting on an American Airlines flight that was supposed to take off at 8:45A to Los Angeles, when it was delayed for take off because the two gentlemen seated in front of me needed to get off immediately, and because no one can leave a plane without claiming their baggage, the plane was delayed. I later found out that those two gentlemen where reporters and that they had already heard about the crashing of the first plane into the Trade Center…so we sat. While we sat, the flight attendants on the plane I was on, started to receive upsettling phone calls from their friends about people that they knew, who had been on the plane that had already crashed. I decided to call my husband (he worked across the street from the Trade Center), and even though I was pretty sure he hadn’t left for work yet, I was thinking he probably shouldn’t. When I reached him, he turned on the TV, and for the first time he saw what was happening…that was about 8:55A. I sat on that plane waiting to take off...and then the Captain of the plane made an announcement informing us all about what was going on in the world, that an American Airlines plane had crashed into one of the Trade Towers just around the time we were supposed to have taken off, and that another one had just crashed into the Second Tower, all flight transportation had been canceled and that they were releasing us from the plane. As I walked through JFK, I heard through the hysteria in the airport about the third plane crashing, and I began thinking I might have to raid the vending machines because I would have to spend the night at JFK Airport, at the same time I was wondering if this could perhaps be the World’s Last Day. I made my way through the crowds, went outside and found a Transportation Cop and asked if there was any transportation out to Long Island. He said that there usually was a bus every half hour, but he hadn’t seen any in a couple of hours, and then he said “But wait, you’re in luck, their it is, that’s it, it will take you to Roosevelt Field Mall”. I jumped onto that bus, there were three other people on it; we drove very slowly through the crowds, street traffic, and panic. It took us over two hours to get to the Mall, when it would usually take a half hour. I was on the cell phone with my sister (which also was amazing because service was not easy to get), when she told me the first Trade Center had collapsed. My husband was able to pick me up at the Mall; he did not go into work that day...you were lucky if you didn't have to go anywhere that day. I got home around 1P; I got to see my family on that day. I lived to see another day. I’ll never forget that day. We should never forget that day.

Time Flies

This August 30th was the 20th Anniversary of the first time I had brain surgery. In 1990 I was the mother of a one-year old baby girl. Jon and I moved four times the year before that, because our apartment had been destroyed by the Con Ed Department Steam Pipe Explosion-a true New York City story. We had decided a lucky 15 minutes beforehand to take a walk with our then 4 month old baby girl, and because of our miraculous timing, we had been left unharmed…had the timing been different, that story could have been different…our next door neighbor was killed in her apartment. One morning after happily and finally being moved into the last apartment, I woke up and whacked myself in the eye with a phone…who does that? Guess I couldn’t wait to pick up the call. Phones in those days had a great deal more heft to them than they do now and I really felt that heft…I genuinely saw stars, and the next day I saw double. I called my eye doctor and described my problem, made an appointment, and barely made my way to his office. When I arrived, he did his Eye Doctor thing-he looked in my eyes, had me cover one eye, then another, gave me drops, then looked again. At the end of that visit I was prepared for the diagnosis, and he told me “There’s nothing wrong with you”. I said “How can that be-I can’t see? Is that an ophthalmological point of view or a neurological point of view?” He said “It’s an ophthalmological point of view.”…and off I barely went as I made my way home to begin my long research project to find out what was wrong with me. Little did I know on that day that that whack in the eye with the phone actually would serve as an alarm bell about a tumor in my brain that otherwise I might have gone years without noticing, but the swelling is what caused me to have tests that I wouldn’t have needed until perhaps it was too late to do anything. Little did I know on that day, that twenty years later that the project I was embarking on, would be such a long one, that the lessons would be so numerous. Little did I know on that day that many years later after two brain surgeries, many MRI’s, and many opinions I would discover that what I had was a very rare kind of cancerous brain tumor. What a long, strange trip it’s been. My oldest daughter is now 21…we just dropped her off at college to complete her Senior year, our youngest daughter is 14 and just started her first year of High School-we’ve moved several other times, most recently this year. This year in particular has been a difficult one, but it’s my hope to be able to pick up this blog where I left off last year, and to pass on the lessons that I’ve learned over the last 20 years. The education that I’ve received is not one that I would have chosen, nor would it be a school that I would have attended…but I did, and the information I’ve learned is worth others knowing. Beyond that, I just received confirmation from NYS, that BRAIN MATTERS INC. is now my official non-profit corporation…this took longer than I thought, and it’s still my hope to walk from my house to Massachusetts General Hospital next Fall to raise funds and awareness for brain tumors. I thought it would be this Fall, but between the stress of this year’s other events and some post radiation effects that slowed me down, coincidentally the paperwork timing and my personal timing worked out; even if I was physically ready to walk, paperwork-wise I wouldn’t of had everything in place. My reason for walking to Mass General is not only because that was where I went for Proton Radiation two summers ago, but because as someone who has seen many doctors and been to many hospitals, it was one of the best and most positive experiences I’ve had within these many years, and I’d like to give back what I can to them as I start on this next chapter in my life. As of my last visit this June, my tumor has not grown…that’s great news! The concept of being able to think more full heartedly about the next chapter in my life is not one that someone whose been where I’ve been takes for granted. I’m back, we’ve moved into our new house…I'm looking forward to the future. My hope is that by my sharing what I've learned during these last 20 years, that it may make it just a bit easier for someone who is about to face similar circumstances...even just a bit, and for me personally, maybe it feels like there's a reason for this School I've been made to attend. May The Force Be With Us All!

Before You Can Walk, You Have to Ride…Or It’s Off to Musa’s Slaughterhouse We Go

It’s still my intention to walk the 227 plus miles from my house to Mass General Hospital this June; that is of course once I create my Non Profit Organization (which I find out takes time…lots of time), fill out paperwork to attract and attach various sponsors, contact sponsors and wait for them to call me back (which I find out, takes time…lots of time), train to walk long distances in all kinds of weather, and drive the walk to see what neighborhoods and terrain I’ll be going through. Will I need a weapon? Only kidding. How many hills will there be? How steep are they? Will I need rock climbing shoes? Only kidding.

So on September 26th (quite a while ago now, I was hoping to blog sooner, but these have been busy times), Rachel…my 13 year-old daughter, also my navigator, as well as my cameraperson, set out to make the ride of the walk. We had to go on all the side roads…no highways-that’s not how the Google Walking Map is laid out. We had to go over only the bridges that you can walk on; that would not be the Throgs Neck or the Whitestone Bridge…this is a story for another time. After driving 20 miles we had made it just over the 59th Street Bridge. This took us about an hour and 15 minutes…not so unusual really…not so usual yet. It takes me about this long even if I was to take the highway, and not the side roads to get to the city. Once over the bridge, we have to traverse ourselves through traffic, traffic lights, people crossing…(just because they feel like it), as well as the directions themselves. My navigator was doing an excellent job. We drove about 10 miles to get to upper Manhattan or Harlem, and from here we traverse uptown to the Bronx…the South Bronx. I think that until this day, while I’ve lived in New York most of my life, I thought that the Bronx was the Bronx Zoo-it’s not…not even close. Rachel and I drove about 1 mile, when we came to another light. This part of the Bronx was filled with many burned out warehouse type buildings, and boarded up apartments. At the light, we looked over to our right, and noticed a warehouse building with a wide open space about 20 feet long and 8 feet high, there was wire gating across the lower part of the opening…and inside some very cute sheep, goats, chickens…very nice. Rachel turned to me and said “this is a strange place for a petting zoo!” While we waited for the light to change we scanned the front of the building to see more about what we were gazing upon, and then we noticed this: “Musa’s Slaughterhouse-You Pick ‘Em, we Kill ‘Em!”. Wow, this is some interesting neighborhood. Rachel was sure that it must be illegal and that we needed to contact the police; I told her that I was equally sure that they knew about it, and that’s it mustn’t be illegal. She then said “you’re going to be walking here?” I told her that I probably would, but that I wouldn’t be alone when I walk; after I said that, I thought “I’m going to be walking here?” From Musa’s it took 20 more miles before we were out of the Bronx, (can’t say the scenery improved much), until we hit Pelham in Westchester. Twenty miles though, that may be the limit to how much I will be able to walk in a single day. What if I can’t walk that far on that day? I would like to stay overnight at a place relatively close to where I stop walking for the day. Not too many places along the way to stay here. Definitely stuff to think about.

We drove 80 miles to Bridgeport, CT and it took us 5 hours, this was only one third of the total trip…we decided to hit the open road, to make up some time. I was fairly confident that the next 100 miles of terrain along the Boston Post Road would be mostly the same. We drove about two hours before we got off near Hopkinton, MA (about 28 miles from Boston), I wanted to see the hill that is often referred to during the Boston Marathon as “heartbreak hill”. How steep was this hill? It definitely was steep, but not as big an issue for a walker as it would be for a runner…but of course I was driving, not walking…not yet anyway. Again, this will be something to think about. All tolled it took Rachel and I ten hours to drive from our house on Long Island to what will be my final destination in June-Massachusetts General Hospital. We were exhausted, Rachel was in tears; I could have used a drink. We did locate a Dairy Queen at the tail end of the trip just outside of Boston…it lifted us up a bit. There aren’t any Dairy Queens anywhere closer than two hours from where we live, so this was a treat. This trip would usually take 3 ½ hours to drive, and will probably take me, depending on how many miles I walk a day, and what my ultimate route will be, somewhere around 16 days, or so. Again, there are definitely things to think about.

The Tide is Turning

About a month ago I was feeling a clear sign that what had been stuck for so long, was becoming unstuck...that what was miserable for such a long time, was becoming less miserable..and what has been unfortunate, was turning towards fortunate.

Within a single week these things happened:

We went to see a Mets game and our tickets which had been located in the bleachers, were upgraded by the “Met Guest Services God”, who apparently takes bad seat tickets and swaps them for good seat tickets…just because; just because he likes you. I was wearing a classic Mets t-shirt that day...that couldn’t have hurt, and perhaps also because they wanted the stadium to look fuller to the TV audience. There were no shortage of tickets I’m sure (the Mets are having an awful season), but their loss turned out to be our gain. We were given tickets two rows back from the field, behind the Chicago cubs dugout. Nice! Another clear sign of good fortune, was that on that special night, the Mets actually won.

A week or so later, I was celebrating my birthday (just damn glad to be here), and Jon bought me a scratch off Lottery ticket. I scratched...these things almost never return more than the dollar or two I spend on them…but today, on my special day, I won $25. This was definitely a sign, and I hope a trend.

And then, when things could hardly seem like they could get better…we sold our house (a relief). This isn't a good market to sell a house. But we did. We have to be out in two months, that's an ambitious schedule-it's a part of the price one pays to sell a house in this market.

So last week, when it looked like the house that we needed to find to move into was being shy, we were not seeing anything…not a house to buy, not a house to rent (we have two dogs, two birds, and a bunny-not many renters are looking to have a small zoo move into their house), we were considering a house that was half the size we needed (no that’s not right, half the size we could fit into), when the right house came on the market. Today as I write, the right house is our house. We are set for a December move out/move in day.

I am a fan of the way that the Tide is Turning.