Some things can’t be expressed on film or video blog. Some things you have to write down.

When I was speaking at Fairfield Ludlowe High School yesterday one of the students asked me how I thought what I’ve been through had changed me? This of course is a huge question. It would take almost an entire class to answer just this question. But I think if I had had the time to think about it beforehand, the way I’ve had since he asked, I would say that it has given me the understanding of the power of the ability to “keep on keepin’ on”. If today is not good, tomorrow may be better, if you don’t feel what one doctor is saying to you, then find another doctor. If the weather is bad today, then there’s the possibility it’ll be better tomorrow. This walk that I’m taking symbolizes all of that to me. So far I’ve had terrific weather, that’s been great, but I’ve also gotten lost and my cell phone has run out of battery power. Things that I was hoping would happen didn’t, but I keep on keepin’ on. Perhaps, I always had a bit of this in me, but I know I’ve needed to have it for all that I’ve been through. And so…I’m, walking the walk, which in some way or another I feel I’ve been doing for some time now, even before I took that first step out the door this last Saturday. Check out www.brain-matters.org, to learn more about the walk.

What was that you said?

Just like so many things, it’s all in how you choose to look at it I guess. One of the side effects of my first surgery has been the loss of hearing in my left ear. This may not seem like much, because after all I still have hearing, and for this I’m extremely grateful. However, the difference between hearing in one ear and hearing in both ears is still a big difference, which you may not understand until you’ve lived it. For instance, when you’re driving and you hear an emergency vehicle, you’re never quite sure from which direction that vehicle is coming; you don’t know which side of the road to pull over to, or if you need to pull over at all-it could be possible that emergency vehicle you’re hearing isn’t even within what would be considered your zone of concern. Then there are the times when someone yells your name down the block, and the block is crowded and the person yelling is far away. You may look for a long time before you find that person-that is if you ever find them at all. I can remember a time, when my mother and I were both outside her house, but not near each other. She was in the front and I was in the back-she called my name, and I continued to do the same until we both walked in a complete circle around the house, not ever connecting with each other- neither one of us stopping while calling out to the other one. Finally after about five minutes, I decided to stand still and she ran into me. We’re both deaf in one ear and we weren’t able to tell from which direction the other one was calling. We may very well have done this for much longer than five minutes with no real idea or indication where either one of us was located if I hadn’t stopped moving. Just glad the situation wasn’t an emergency. I think she was calling me to come look at a flower that had bloomed. Another thing about being a singular h/earer is when I’m in an important meeting, and the location is in a conference room or maybe a restaurant-I have to think a lot about where I will sit within that group before I actually sit, and if all the sitters haven’t arrived yet, oh that’s a real tension heightner. I must also always assess to the best of my ability what noise or noisemakers I potentially could be sitting next to. I know there’s a good chance I won’t be able to hear everyone at the meeting, and I need to think about who will be talking the most, and even more importantly who do I need to hear the most. Again, these are just things. Then there is stereophonic sound. This is lost on me. A bit sad really. I haven’t heard stereophonic sound since maybe 1989 when I went to an Elton John concert. I’ve noticed people who’ve made a concerted effort to use only one of the earplugs on their cell phone headsets in order to still hear the outside world while they’re talking to someone on the phone. I suppose this is the same concept behind one-piece headsets. This kind of rigging doesn’t change a thing for me; I have the same complete concentration to whomever I’m speaking to, with total silence to the outside world without this rigging. I have this because I have only one working ear. But all these things considered it’s still much, much better to hear than not to hear. By the way, better to use a headset than not to use a headset for health reasons, whether you have the use of one ear or two. That being said, what I hear can sometimes be quite interesting, even funny...depending on how you look at it, and after 22 years of not hearing with both ears, that’s how I’ve decided to look at it. There are many things I’ve heard wrong, enough probably to fill lots of pages, but recently I thought I would write a few of them down. Here are a few of those things:

Recently I was getting my hair cut by my friend Sasha. I’ve known Sasha since before I had my first surgery, since before Jamie was born, when I could still hear in both ears, so we’re talking over 22 years. Sasha was telling me a story. We had started talking somehow about how people are living longer lives than they ever have before, and she said she had read a story about a woman who was 92 years old and “could still pee”. I heard this and thought that while this didn’t seem like all that much of an accomplishment to me, and I that should I reach the grand old age of 92 I hoped I would be a natural in this department, perhaps there are plenty of 92 year olds out there that aren’t able to boast this same accomplishment. Maybe there are many 92 years olds who are wearing adult diapers and aren’t in control of their bodily functions at this age. So, I said to Sasha “Wow, 92 years old and can still pee?” She started to laugh hysterically and tried to talk, but her words were unintelligible. I wasn’t sure why she was laughing, since I was sure I was just reiterating what she had said to me…but she was convulsed with laughter and could not talk. When she was finally able to pull herself together, she came around to my hearing side and told me what I was unable to hear the first time around. She said, “No, Heidi, she’s 92 years old and she competes. She’s just completed a marathon”. I thought to myself, “Ah, now that’s an accomplishment!” It’s hard for those reading this I suppose to understand how “can pee” and “competes” could sound the same, but to those that can hear “sort of” those things sound quite similar, and not only that, they sound that way a lot of the time.

On a different day I picked up my youngest daughter Rachel from school. We were in the car together. We got into one of our usual post-school conversations. She was telling me about her day, maybe she was complaining about somebody, some teacher, some class, something. I made a comment about one of her complaints. I wish I could remember the specificity of this individual situation, but I can’t. At the moment, on that particular day, when the particular conversation occurred, it held the heft of its particular importance…afterward (sometimes, shortly afterward) it seems to fade away. So looking back on the situation, I’m straining to remember the particulars, but for this story the particulars are not so crucial anyway. So Rachel tells me something and I comment. She comments back, “Oh you’re an old fart”. First, I’m quite surprised to hear Rachel use the word “fart”. I’m just surprised that Rachel knows the word “fart”. It’s not a word I recall her ever using, but perhaps it’s just entered her vocabulary. Could that be? Second “since when did Rachel start to use this saying?” Is this a part of some retro High School lingo? I answer back, “You may not like what I said to you, but why did you just call me an old fart?” She started to laugh, and of course as is usually the case in these wrong-hearing situations, I didn’t understand why she was laughing. It took her a few moments, and then after getting over hearing me say the word “fart”, which she found funny I suppose, she said “I didn’t say were an old fart, I said you’re no fun.” The most interesting thing to me about this mishearingness, is that while I’ve heard things that sounded more similar to each other, the sentiment of these two comments is very similar “you’re an old fart” and “you’re no fun”. I could have after all have misheard her say “you’re not smart”, or “do you carry a gun?”

On a different day, I had gotten together with my friend Leslie at my local diner. We ate, we talked, the bill came, it was time to pay; we divided the bill…easier that way. She looked at me while holding a twenty-dollar bill and said, “Do you have gas?” We’ve been friends for almost twenty-five years, there’s almost nothing we wouldn’t feel free talking about together. We’ve gone through our pregnancies together, she was there after both my surgeries, we’ve been through a lot together, and so “if she wanted to know if I had gas”, I wasn’t all that put off by the question. I wondered why she cared if I had gas, but I wasn’t put off by her asking if I had it. It did make we wonder if she had gas. So, I said, “No, I don’t have gas, why do you care? Do you have gas?” She said, “No, not gas, I want to know if you have cash, all I have is this twenty-dollar bill. I want to know if you have any change, and I don’t have gas” So then of course we laughed at my usual lack of hearing, I gave her a couple of bucks. I was glad to hear she didn’t have gas. This is not the first funny non-hearing story between she and I-it won’t be the last.

Then there was this story that happened only recently. It was this last event that compelled me to finally write about how I hear things differently than what is actually said. I thought as funny or embarrassing as some of these “non hearing moments” may be, they may never top this most recent one. I was walking my dog Max, a feat in itself. Max is strong…a puller. He has definite opinions about the people he likes, and doesn’t like, but he’s just a bit older than two, and he’s improving every day, but still…he’s Max. So we were out, and we passed this house up the block from our house on our way home and Max was looking for the dog that lives in this house. The dog that lives in this house is an old Jack Russell Terrier. For those that don’t know, a Jack Russell terrier in their prime can also be quite opinionated, and a force to be reckoned with-they’re small dogs, very bright, and don’t seem to care or know that they’re small. This particular Jack Russell is almost 16 years old. The owner and I have talked before about her dog and how he’s not what he used to be, and how she takes him outside to “pee” now (there’s that word again), and he just stands there, but he’s still hanging in there. So on this particular day when Max and I were passing the house, her dog was not out, but the owner was sitting in a chair outside. Max was sniffing around for the dog and I said to the owner “my dog is looking for your dog”, and she said with what sounded like a bit of a sad low tone to her voice, “Oh, he just died”. I was horrified to hear this; I had just seen her dog and he seemed like he was doing okay. He was by no means fit as a fiddle, but he was oozing down the road, if not easing down the road, and he seemed to be happy enough. I said to her with genuine sadness “Oh, I’m so sorry to hear that!” and she quickly said with more of an upbeat almost corrective tone, “oh, no, no, he’s fine, he’s just inside”. I of course felt embarrassed and immediately apologized and told her that, “I don’t hear very well, that I misunderstood what she had said, and that I was glad to know that he was still with us”. She said, “No, he’s still hanging in there”. As Max and I walked back home I was a mix between sadness, awkwardness and laughter about myself and how I hear. I felt sad for the owner of the Jack Russell Terrier. I hoped that I didn’t fill her with sorrowful thoughts about her aging friend. I also couldn’t help thinking a bit about the embarrassment of seeing her the next time we ran into each other on the street. This is the way of things when you have hearing in only one ear. But even considering all of these times I have heard things wrong, I always know that having hearing in one ear is still better than having no hearing at all. It’s all in how you choose to look at things.

What a difference a day makes

One day and 2.5 miles down the road from my school experience from yesterday, I sat down to talk about Walking Miles 4 Brain Matters with another school. This I’m happy to say was a whole different story from my initial meeting with the school the day before-the manner, the interest, the respect were all much more compassionate and upbeat. I can describe it only by saying that I was made to feel as though I was a person who was trying to bring awareness to an important cause, instead of a traveling salesman pushing the latest gizmo.

After this positive reaction, I traveled back up the road to talk to someone else at the same school I had had my not so good experience at yesterday. This time I spoke to someone else-this person explained to me that while things were busy at the school, that it was a good thing that I was getting in touch with the school now because of how much planning things take. I did mention to my most “recent person”, that I had spoken to someone at the school that had suggested that I’d be best to contact the school at the beginning of September about my walk on October 1st. My “recent person” went on to say that there are many fundraising events at the school and that waiting until the beginning of September would probably be too long to wait. “Now we’re making sense”, I thought to myself. This person I met with was polite and took the time to listen to what I had to say about Walking Miles 4 Brain Matters. I told him the importance that this particular school had for me, I also explained to him that Brain Matters was prepared to contribute whatever effort was necessary to help make this event come true. He said, “I will look into this further, please call me back in two weeks”. And so I will.

I will call everyone back as I continue to call others for the first time, and visiting others. What have I learned? For schools it seems to be better if you can meet people in person, than on the phone. We’ve sent many, many emails out, and made many phone calls, but nothing has received quicker more immediate feedback than an in-person meeting. We have spent a lot of time trying to find the correct person to talk to; the person you’re talking to may no be the one making the final decision even though they may sound like it-it took a while to figure this out. The lesson continues and so does the road.

Friend of a Friend

A couple of weeks ago I was sick with the flu, I should have gotten the vaccine, but in the past I’ve gotten the vaccine and actually ended up getting the flu anyway. I made an Executive Decision and decided not to have the vaccine this year…wrong decision. Next year I will get the vaccine…next year I’ll be one of the first people to get it. This flu took me down to the mat. First, Rachel got it-this is almost always the case; Rachel goes to High School and is a sponge for maladies, and then the worst part about this for the rest of the family is that she’s a donor-the gifter if you will, of maladies. A week later Rachel was much better…a week later Rachel’s illness had become mine; mine lasted for a month. What was first a flu-became a sinus infection. In the middle of that, Jon also was gifted the malady; he said he hadn’t remembered being that sick since Jr. High School. It was bad, and ironically it was Rachel’s Winter Recess. Jon had taken nine days off…not exactly the vacation we had imagined. At my peak of fluness, a friend of mine called and asked if I would talk to a friend of hers-she told me that her friend’s husband had recently been diagnosed with a glioblastoma. The relativity of life! Here I thought I was feeling horrible. This is a very difficult type of tumor to treat. I wasn’t sure what I would be able to say or do for my friend’s friend, I felt like crap, but I was sure she felt worse, and if it would make her feel better just being able to talk to someone who knew what it felt like to be a person, or to be with a person that had a brain tumor, of course I would listen and try and help. We talked. I don’t know if anything I said was useful. I was frustrated that I wasn’t able to do more. I was also frustrated because during these sick few weeks I had lost valuable Brain Matters time. Time I could/should be using to be able to set up my walk, and to meet with people I had been wanting to meet with…this conversation was just another indication of how much more needed to be done with regard to brain tumor awareness. No tumor patient is exactly like another one…but I lived close enough to this friend of friend’s neighborhood that I knew the neighborhood well enough, and all I could do was pay a visit. Why isn’t there more in the neighborhood?

Then two weeks after that conversation I met with the Director of the Brain Tumor Foundation and I learned something very interesting…the Foundation is making a tremendous push for early detection. I think this is a fantastic idea!

The earlier you find out if you have a tumor, the better the chances for curing that tumor. The smaller a brain tumor is, the easier it is to operate on, with all likelihood the less impactful it will become on very important nerves, the brain itself, etc. Overall, it will just be easier to treat. Without a doubt the people I’ve spoken to through this blog, or because of what I’m about to do, or have been through in my past were surprised to find out that they had a tumor…myself included. You usually don’t know you have a brain tumor until something major happens. One day you might have a seizure, or you don’t remember something very basic like your own name, or you start to hear ringing or buzzing in your ears, or you start seeing double. If you were to have an MRI as a part of regular check-up, the way we do mammograms, this would save lives. I know it would. Twenty years ago, when I was originally diagnosed, the ability, ease and technology to have these tests on a frequent basis did not exist, that is not the case today.
This is a step.
This is action.
To learn more go to www.braintumorfoundation.org

On A Mission...

A Mission is a responsibility, a duty, a commitment, a life’s work, an undertaking, a journey, an intention, a venture, a purpose, a calling, a pledge

A Mission Statement is supposed to be an official statement of the aims and objectives of a business, but it’s so much more.

I’ve written several mission statements for companies I’ve started, companies I’ve thought of starting, projects I’ve started, or thought of starting-it’s what I’ve had to do, it was a part of what was considered necessary-a part of the process, I never really thought about what a Mission Statement was, just what I needed it to be, what I needed it to accomplish-it needed to be a sales tool and that’s how it was written. It wasn’t until I was writing the Mission Statement for my Non-Profit Corporation, Brain Matters that I realized for the first time the real meaning of that word “mission”. There has never been a Mission Statement that I’ve written that’s been more important to me than the one that I’ve written for this company-it’s because this company is a "mission" for me. It feels like one of the most important things I’ve ever tried to do in my life. This is the Brain Matters Mission Statement…this is my mission, my commitment, my pledge.

Brain Matters has been created to bring awareness to the public about brain tumors; this is a personal mission to me. I was diagnosed with a brain tumor 20 years ago; it turned out to be a cancerous. Since then I’ve had two brain surgeries, and two rounds of radiation. There are advances made in medicine every day. As a patient I have learned that one of the most important things may be that while you’re greatest wish is to be cured, it may be just as important to stay alive long to take advantage of the medical advances that happen in the future until you can be cured. There are many people that don’t get that chance. I was given that opportunity.

As long as I’m physically able, I feel a responsibility to do what I can for those that aren’t as able as I am right now, and to try and do what I can for the cause. It’s for that reason that I intend to be “Walking Miles 4 Brain Matters”. I will walk 250 miles from my house in Port Washington, NY to Massachusetts General Hospital in Boston this October, taking basically the same route that my husband and I took every week when I went for proton radiation therapy at the Mass General Proton Center two years ago. I will walk through the neighborhoods and towns that I passed along the way, reaching out to the people in those towns. The kids at the schools along the route will walk with me and help raise funds and awareness for the Brain Matters cause. Brain Matters is dedicated to making the public aware of brain tumors-not just cancerous tumors, but non-cancerous tumors as well, which can be just as life threatening. We will create a documentary film of this entire walk.

Part of the funds raised by Brain Matters will be donated to Massachusetts General Hospital’s Proton Center. The Proton Center is one of the few Proton Centers in the country; without the center I probably wouldn’t be able to make this walk, perhaps I wouldn't be here today, nor might many other people who have been treated at the Center. Proton Radiation is a very important part of brain tumor therapy. We also intend to donate funds towards medical research for brain tumors. My hope as a patient is that when a person is diagnosed with a brain tumor and their doctor needs to tell them their diagnosis, it doesn’t sound like this… “I’m very sorry to have to tell you this, but you have a brain tumor. Brain tumors are very difficult to treat and we wish we had more options available to you at this time, we will try and do the best we can of course”. This walk and documentary is just the beginning, it’s Brain Matters hope that the walk will become a yearly event, from which many other things will happen.

As I said before, not many brain tumor patients get to live long enough to shine a light on a subject matter that is darker than it should be, and because I’m still here, I feel it’s important to do whatever I can do, to be one of those lights. To me it couldn’t be more personal.

May They Always Come Back

Oh those rings! I’ve talked about my rings before. I have an engagement ring and a wedding band sitting on the finger these rings are supposed to be sitting on…that is they were sitting there last week, they occasionally leave and decide to sit elsewhere. For instance, in the past I had been concerned that because I was doing somewhat strenuous activities (like twenty years ago), that I might lose my rings, so I put them in a safe little box. I didn’t know that the safe little box would be in an unsafe apartment that would be the victim of a steam pipe explosion. After that explosion, I thought those rings were lost or maybe stolen-I couldn’t find them anywhere; Jon bought me new rings. Five years later when I was clearing out an old box from our old apartment (we didn’t have that much left from that apartment-most everything was contaminated with asbestos, or destroyed, or stolen), I went through this box, and there they were…the other rings…waiting to be found…just resting. Someone (not me), one of the workers that had been hired to clean the building, must have put the little box into this bigger box, not knowing what was inside the safe little box, or maybe they did, and decided to leave them there to rest.

Then a different time, when I was about 8 months pregnant with Rachel, I took off my rings (the newer ones), because my fingers were swollen, and put them in a jewelry box in my closet. I didn’t think much about it. A couple weeks later I looked for the rings but I couldn’t find them. I didn’t think much about it, there was so much going on at the time. Not only was I pregnant-but we were raising the roof on our house and building another floor. The construction was behind schedule-instead of the building being completed by the time Rachel was born, we were just starting to build right before Rachel was born. We were also dealing with the process of hiring a babysitter or nanny because I was only taking off 6 weeks before I went back to work. Jamie was 7 years old at the time, Jon wasn’t loving his job…so maybe, just maybe I hadn’t put those rings in the jewelry box-it was possible. I thought about it, but I wasn’t obsessing over it. Then I got a call from the local Coach store thanking me for my purchases for $500-only problem was I hadn’t made any purchases there. The next day I received a call from my credit card company informing me that I had made $8000 worth of purchases…wrong. Hmmmmmm…. I decided to take a ride to the Coach Store with a picture of my babysitter (she was the only other person besides myself that would have had access to my closet). When I got to the store I asked to see the woman who had called me. She came out from the back of the store, and of course she did not recognize me, but interestingly she recognized my daughter Jamie who had come along on this bit of Secret Agent business with me; she apparently had been with our babysitter on the day the Coach purchase in question had been made. Jamie wasn’t supposed to be driven anywhere without prior permission-guess our babysitter forgot. I showed her the picture of our babysitter, and she confirmed that the picture was definitely the “thankee” that she meant to be calling on the phone the day before my visit. I decided to go to the police the following day. The police couldn’t do anything about the Coach purchase because it was a credit card exchange and that was out of their jurisdiction. But what about those rings? I wasn’t sure if our babysitter might have gone into my jewelry box in her spare time-but it seemed considering the recent information, that it was possible. The police went to her house-she let them inside; they told me afterward that she had piles of bags and boxes-probably from all her shopping sprees. They asked her to accompany them to the Police Station; she answered some questions and was kind enough to produce a pawn slip for my missing rings. What do you know? The rings were missing! They were stolen! So the rings went on another trip and back they came. They could have been sold, but they weren’t. Our babysitter could have chosen to not produce that pawn slip, but she did.

So…last week, I noticed that my increasingly thinner fingers were not holding onto my rings the way I’d like them to, and I wondered if I should have them resized…that day was Wednesday. As I wondered this, I thought it will be easier to decrease the rings, than to increase them, and that while the band for my engagement ring is simple, my wedding band would require a bit of artistry should I need to increase its size after decreasing its size, and would it really be worth it to go through all that, when my fingers might very well expand in the near future. Much thinking was given to this matter. I specifically choose to wear the wedding band on top of the engagement ring because it’s smaller and that way it acts as a stop gap if you will, for the engagement ring, also thinking strictly monetarily, the engagement ring is more expensive than the wedding ring, and all and all, while I’d be sad…very sad if I were to lose them, I’d be much sadder if I were to lose the engagement ring.

Then Thursday came…that’s Laundry Day. It was about five in the afternoon, and I was in the Laundry Room (this is quite a good size room, as rooms go), I casually tossed a pair of jeans from the laundry basket into our front-loading washing machine, and there it went…I could feel the rings moving easily and quickly past my ring finger knuckle. The jeans went into the washer, I looked down at my hand, and I saw the engagement ring teeter-tottering at the tip of my ring finger, and the wedding band was gone. I didn’t hear a sound, I had no idea what direction it may have gone; it didn’t even occur to me that it might have gone into the washer. I was most concerned about a very large drainpipe that sits directly in front of the washer, that’s about four inches wide and infinitely deep. I finished loading what I needed to load, now and then scanning around to see what I could see…seeing nothing. Not Good. I didn’t turn on the washer because I wasn’t sure how this would effect the drainpipe-if water would rise in it, and potentially sweep my wedding band down and or out. I stood for about five minutes in the room, trying to pick up on the energy or the “signs”, as I sometimes do in these situations, and I had a tremendous pull to look directly under the washing machine. I didn’t have a pull to look anywhere else, so I went with that calling. I should mention that the edge of the washer sits about four inches from the deep drain to nowhere. I got down on my knees and looked under the washer…not so slightly under, past lots of lint, fuzz…lots of things, I caught a glimpse of something about five inches back from the edge, that could have been a button, maybe an old toy; it was hard to tell. I reached in, barely able to touch it, and it was my wedding ring. So there it goes again…always coming back. I was very glad to have been reconnected with my friend.

After I put the rings in a place for safe-keeping (I hope), and think about what I should do about wearing them…should I eat more, decrease the size, or hang them from a chain around my neck? I quickly got on the phone and called my Mom and five friends-all people who know the history of my rings. I wanted to find out what meaning they thought this recent ring event had if any…wondering if they thought it meant anything else other than I needed to eat more because my fingers were becoming too thin. The responses were all very “ringlike”. I share these thoughts…to me they represent the magic of the rings and of life. The responses were, “you’re lucky in unlucky situations”, “Jon will always be there for you”, “those rings are meant to always come back to you”, “those rings belong to you”, and lastly from my good friend Cindy, “I think this is a sign, that just like all the other times when your rings left and came back, it’s the sign of a new beginning”. Oh those rings!

It's Days Like This

There’s this way of assuming things, taking things for granted, that once you’ve learned that you can’t…you don’t…you won’t, not ever. This not ever taking things for granted is as they say “both a blessing and a curse”, it allows you to appreciate things in a way that you may never have been able to before, but you also are anxious and worried that you may not live long enough to see and do the things you want to be seeing and doing. So it’s with that in mind that I tell my next story…event really. It goes like this:

Jamie (my oldest daughter), who is now in her senior year at the University at Buffalo was recently cast as one of the leads in Neil Simon’s farce “Rumors”. First, it’s hard to believe Jamie is a senior in college. She just started college when I called her to let her know that I was going to have to have another brain surgery. My first brain surgery was when Jamie was a bit over a year old-she doesn’t remember much, if anything at all about that surgery. Anyway, back to our regularly scheduled story.

The three and half years since Jamie started college have flown by in one way, and crept by in another. So much has happened in these years, and yet there have been times we have all wished for certain of those events to move by faster than others. The family has moved, we’ve had pets that have died, more doctors appointments than we can count…these things some how have gone by slowly, but Jamie’s time in college…to us anyway, has gone by quickly.

Jamie has always loved the stage; she loves everything about it. Before she was performing on a stage, she was performing at home. When she was got a bit older, she went to USDAN, a summer theater camp where she met and still stays in contact with other theater loving kids-who have and will go on to pursue careers in theater. I don’t think I can remember happier times for Jamie than the ones when she’s been onstage. Among other roles, she was an excellent Peter Pan at her Junior High School-in fact they still talk about it at that school, and it’s been probably eight years since she’s played that role. This year she was cast as Chris Gorman in “Rumors”. Jon and I booked our flights, our hotel room, Max’s Pet Motel stay. We were in snowy Buffalo a total of 24 hours. Jamie said something, that rang poignantly to me; she said that was probably going to pursue a career in the world of theater, but her intent was not to pursue a career as an actor (that wasn’t what rang poignantly). She said, “you know, I was thinking…this may be my last time on stage!” My feeling is that if she loves it, she will find a way to do it. What’s the saying? Where there’s a will, there’s a way? Even if she doesn’t do it professionally, she can do it locally, or regionally…who knows…passion is an extraordinary thing. I know this first handedly. But still it did leave me with a funny feeling; it felt like sort of an ending, which I guess is somewhat of the same feeling she was feeling in herself. All the more reason I was glad to have been able to make the trip.

The organizing and traveling for this “blink of an eye experience” was so totally worth it. Jamie was magnificent. She looked terrific, she was funny, captivating, of course I missed the fact that she didn’t sing, because I love when she sings, but I was so glad to be able to be there. As I was watching her on stage all I could think was that over these last few recent years I wasn’t sure where I was going to be, or how I was going to be…but here I was…watching her. I will remember this always. I love you Jamie-you’re terrific, and will be terrific at whatever you choose to do.

25 Years

I haven’t written in a few weeks, so many things…so little time in which to do them. I’ve been preparing for the walk for Brain Matters-this means many phone calls, paperwork, meetings, and exercising-all great, but definitely time consuming. Thank you BTW to all of you who have been working with me; I couldn’t be doing it without you. I can’t help thinking how it certainly beats last year when I was deep in the middle of moving from one house to another…so glad I’m not doing that this year. Also, on November 16th, Jon and I celebrated our 25th Wedding Anniversary, in some ways this went by quickly. What am I nuts? No way did this go by quickly. In some ways 25 years feels like many more years than that-not sure how many more…but more. I was going through some old files a few days ago, and came across something I had written a couple years back. I had written it because so much has happened over the years, that I didn’t want to forget it, I also think of one day writing a book about my experiences and want to make sure I’m able to have these things written down so I don’t forget them. Given this last year and my most recent medical problem and how it effected my memory, I’m glad that I did that. I thought it would be interesting considering the 25th Anniversary Triumph, that I would share a few of the other events that have happened to Jon and I in the last 25 years besides of course the ones that I’ve written about here on the blog, and the birth of our two fantastic kids. It hasn’t been easy to be married this 25 years, some amazing times, some not so amazing, some times I know we both could have done without for obvious reasons, some for not as obvious reasons, but we’re still standing, and we’re still here. I offer these quotes in celebration:

"The secret of a happy marriage remains a secret"
-Henny Youngman

"A successful marriage requires falling in love many times, always with the same person."
-Mignon McLaughlin

"A wedding anniversary is the celebration of love, trust, partnership, tolerance and tenacity. The order varies for any given year."
-Paul Sweeney

And now for some of those other events that have taken place in the last 25 years. You could probably make this stuff up, but knowing that I didn’t is what makes it all that more unbelievable. Does that make sense?

After our apartment was demolished in 1989 because of the steam-pipe explosion, a crew of workers came into the apartment to clean up the asbestos that littered it. We could not stay in the apartment for 6 months during this cleaning. These workers subsequently stole most of what we were forced to leave. My wedding and engagement ring were left in the apartment (in those days I didn’t wear them when I worked and the apartment was closed off without warning). Six months later after the asbestos clean up was finished and we could re-enter our apartment, we couldn’t find the rings anywhere, we assumed like so many other things, that they too had been stolen. Five years later I was unpacking some things and found a box I hadn’t seen before…my rings were inside. Some honest person must have hidden them there for safekeeping. Amazing!

When I was about 8 months pregnant with Rachel; my credit card company called to tell me that there had been $8000 worth of charges on my card. Did I make them? No! Two weeks later a woman from a local Coach store called to thank me for my $500 purchase. Only one problem, I didn’t make the purchase. Suspecting it may have been our babysitter who made the purchase (not many people had access to my things), I brought a picture of her to the store. Busted! We filed a police report. The police arrested her. At this same time I realized that my wedding ring and engagement ring (the ones that I found in the previous paragraph) were missing; my fingers were swollen and the rings didn’t fit, so I kept them in a drawer. When I couldn’t find them I assumed I had misplaced them. I mentioned it to the police. When they asked our babysitter about the rings, she admitted she had pawned them. The shop still had the rings, and I got them back…again. Magical rings!

When Rachel was 5 and Jamie was 12, our live-in babysitter for five years, named Judith, but Rachel called her Judah, started to feel sick. Two weeks later and still feeling ill, she went to the hospital Emergency Room. She was diagnosed with 4th Stage stomach cancer and died four weeks later. Afterward we discovered a diary that showed that she had paid thousands of dollars of her salary over the preceding year to a woman in Las Vegas who claimed to have a “special” relationship with God and could free her of her ills. I really wish she had said something to us sooner.

A babysitter that Jon and I hired before we hired Judah, worked for us for a month, asked to borrow on her future salary and then afterward said she had a tragedy at home in Barbados; she needed to leave, but she would be back in a month. A month later she hadn’t yet returned, but said she still intended to do so. Around that same time we received a phone bill with $800 worth of charges to 1-800-Psychic. We wondered what sort of psychic advice she was getting before she left us? She never returned. We’ll never not have a 1-800 block on our phone line. Later I found out that this kind of storytelling is not so rare.

And that’s just some of the stories in 25 years…so many more. That’s Life. Here’s to Living!

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.