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.

Come together, right now!

This has been quite the couple of months. I’ve been building. I’ve been walking. I’ve been working with friends to create a website…to reach out to schools to hopefully get those schools and the students engaged in the cause and the walk…collaborating to design a logo and a business card and thinking about a slogan. I’ve been getting in touch with whomever I’m supposed to get in touch with to fill out the paperwork I’m supposed to fill out. I’m contacting the people, the corporations, the sponsors, the talent, anyone I can to raise awareness for a cause that needs awareness. I’ve had some amazing help through friends and family, and then there has been the other side that has also been equally educational but not as positive…I’ll call it the Darkside. The side that is strangely familiar. The side that reminds me of when after I had my second surgery and was told that my best option was a third surgery, maybe a fourth surgery, but there was no guarantee that any of these surgeries would cure or even help me, and that it was important that I know that with each surgery there was a risk I could actually be weaker and more impaired. I remember asking if there was anything else that may be out there in the world that might be useful or effective for me. Anything? My doctor said that he was sad to say it, but “No, there wasn’t”. This didn’t seem like an option. Moving on…from him seemed like the best option. “I’m not taking NO for an answer seemed like the only option”. I left that negative optionless room on that day that my surgeon and I had that very bubble-bursting conversation (at least that’s how I saw it), and started to research for another option…any other option other than the one I was being given. After much looking, and much help from many of the same people who are helping me put together the Walking Miles 4 Brain Matters event I’m planning now, we found what I felt was a better choice for me. This is when we found Proton Radiation Therapy. My most recent math problem is slightly different, but the arithmetic is the same. As I’m trying to help raise awareness of brain tumors, I’ve come up against one of the same problems I was dealing with at the time I was dealing with my own brain tumor. I recently was calling to get a school on-board for Walking Miles 4 Brain Matters. The call was to one of the first schools we’re planning to stop at in October. The person I spoke to at this one particular school gave me two reasons why they would not be able to commit to participating to our event. Reason number one in the room of “sorry we can’t help you now” was that it was too soon to think about an event that was in October, but that if I called back after the first week in September, just after school started (only three weeks from the day I was to begin walking) that maybe they could help me out at that time. This was not bubbling with enthusiasm nor helpfulness. It also didn’t make sense. I spent many years at school, my daughters went to school, are still in school, generally everything that is done at schools is done way in advance. The rest of this conversation was deflating for additional reasons which I won’t go into, but I suppose the most deflating was the unbelievable lack of support considering that Brain Matters (our non-profit), is willing to do so much of the work, and really only needs the school onboard for promoting the walk within the school. We would supply attention-drawing flyers to the students, the website includes the permission slips and the registration forms, we would do the advertising on the outside etc. Reason number two in the world of “sorry, we can’t help you now”, was that as I was talking to this school official they told me they couldn’t help me because they were too busy promoting Relay for Life at the moment, and could not divert their attention or the student’s attention from that project, to get them involved in anything else. I am familiar with Relay for Life and believe it’s a great cause-it helps raise money for cancer and incorporates cancer survivors into that fundraising-this by all means is a cousin of Brain Matters. I was not looking to get in the way of this cause. My own kids have participated in this cause in the past, and I was fairly sure that the event didn’t take place until the end of June. But time can fly by when you’re having fun, so I asked the person I was talking to when the event was supposed to take place. He told me it was happening at the end of June. He also told me the school had been doing the event for 15 years, which made me think that while I do know Relay for Life does take planning, so much of it at this point has been put into place because it has been going on for that length of time. I said, “today is April 26th (the day we were actually speaking to each other), that’s almost two months away from now, and you can’t talk to me because you feel too busy with regard to an event that is two months away, that makes me concerned about how much you will be able to do when we’re talking to each other again at the beginning of September with only three weeks until the beginning of my walking event. I realize my walk is in October, but all I’m looking for is to know that the school is onboard, and that we can work together to make this happen…waiting until the kids come back at the beginning of September to decide whether or not you will want to be involved, I believe will be too late to get the message out with only three weeks preparation before a decision is made.” I was surprised by this conversation for a few reasons, some obvious, some less than obvious. Before my friends and I thought of the idea of stopping at schools along the route between my hometown and the last town in Boston, we had put out a few “feelers” to schools about our idea. The schools we had spoken to thought the idea was terrific and were eager to help in any way they could. They thought that being able to reach out to kids and make them aware of brain tumors was great, and having a long walking event that stopped at schools would be a good way to bring publicity to the cause. It was because of this eagerness that Walking Miles 4 Brain Matters was created. We believed that their eagerness would be matched by other schools we contacted, and if not eagerness, then at least politeness and if not that, then good will. I find myself wondering if the reason for the difference in enthusiasm is because the schools we talked to before we “molded” the event were private schools, not public schools? I went to public schools my whole life, I participated in UNICEF, participated in other charitable fundraisers, why was this particular school, this particular public school so…for lack of a better word “non-participatory”? Well, when I hung up after that call I thought to myself, “I’m not taking NO for an answer”, not yet…there must be more options, more people to talk to”. It’s possible that if I had accepted the opinion of my doctor back a few years ago, I wouldn’t be here today. I wouldn’t be here complaining about what I don’t feel is not quite right. It may just be that not every school I call this year will be the right school…not for this year anyway. Many of the schools we have called have already shown a significantly different reception than this one school. This specific school I’ve been talking about happens to be particularly meaningful to me. If it doesn’t work out, then I will have to accept it, but certainly not without coming through the windows, if they’re closing the doors. We’ve got to come together right now. Don’t you think?