Tuesday, March 20, 2012

Often Things Can Seem Like One Thing, But Turn Out to be Something Else...Something Better

Truly it can be in the way one chooses to look at things. I recently had the intention of participating in a local Brain Tumor Support Group, I instead sauntered in to the Aneurysm Support Group-I had no idea that this was the case until after I had spent a significant amount of time at the group. I arrived on time, but when I arrived the group was already seated and had already started talking…it was a group of about 30 people. I asked the woman standing near the front door when I arrived if this was the Brain Tumor Support Group? She said “yes”, but apparently she mustn’t have heard me. She pointed me in the direction of a seat in the back of the room. I said a casual “hello” to the group and I began to listen. I listened as these people of all ages, some with young kids, some with grown kids, some having experienced an aneurysm many years ago, some having just had one a few months before attending this group-they talked about their experiences. I listened and I wondered if anyone in this group had a brain tumor. I listened and I wondered if this could be a mixed group, or if this was only one kind of a group? I listened as they talked about their headaches and their seizures. I listened as some people talked about their speech inabilities, and how they had trouble walking. Some people spoke about how they had trouble remembering words, and how they felt sad about feeling dependent on their loved ones, and their frustration about not being able to drive following their surgeries. Many of them had the fear of getting another aneurysm in the future and what that would mean to them and their families if it were to happen. I think what many of these people were afraid of, but weren’t talking about, may have also been the fear of dying. Most of the people that were telling their personal stories had had surgery before their aneurysm had burst, but the fear of getting another aneurysm and or what additional side effects might be in their future were in most everyone’s thoughts. I listened to their stories and I found them to be so interesting…it’s as though we were neighbors on the same “medical block”.

I didn’t volunteer to talk about my story-I thought it would be disruptive…I was mostly sure at this point that there weren’t any brain tumor patients in the group. I was definitely feeling a bit out of place-I was similar, but not the same. Then the special guest of the evening got up to speak. The special guest was a Neurosurgeon- he specialized in Aneurysm Surgery; his name was Dr. Langer. Now, I was absolutely sure I was in the wrong support group. He began to speak. Their were a couple of things that struck me about this doctor: I found him to be engaging, interesting, insightful, and compassionate…okay, that’s way more than two things. Dr. Langer not only spoke about aneurysms and the brain in a way that was easy for a non-medical person to understand, but he also said something that I found to be quite profound. He told the group, (many of whom were apparently his patients already), who were asking him about their fears…fear of getting another aneurysm, their concerns about still having headaches, forgetfulness, speech problems, many of the things they had already mentioned earlier among themselves, many of the things that I myself deal with as well. He said this to the group “you know…what’s interesting, is that cancerous brain tumor patients often have these same symptoms, but they don’t live long enough to worry about them”. This was an amazing statement! It’s so true, I’m often sad about my deficits, but the fact is that most brain tumor patients don’t live long enough to worry about them. I wanted to raise my hand and say, “I’m that patient”, but I thought it would be too distracting. I couldn’t help wondering if this was why I was meant to saunter into the wrong room? Was it to hear this statement…this scale of relativity? I wanted to spread the “word”. I thought about the potential to help some of these patients. When it came time to leave, I mentioned to one of the nurses at the front door that I apparently was in the wrong Support Group, that I actually had been looking for the Brain Tumor Support Group, but that I found this group and Dr. Langer to be very interesting. She helped me find where she thought the other support group was supposed to be, but everyone there had left already. The Brain Tumor Support Group meets monthly, so I’ll try to go again next month. Who knows what I will learn there. When it came time to go home, after checking out the other meeting room, I “coincidentally” stepped into the elevator with a couple of the women at the Aneurysm Support Group. They both had told tearful stories about their worries for the future of their health. Their stories had really touched me. One woman was a young mother of two young children who had only recently had her surgery. The other woman had had her aneurysm surgery a year ago, but was still having a lot of trouble remembering words and places, and was experiencing really bad headaches-she was wondering how long it was going to continue. I wasn’t sure if I should introduce myself, but I was feeling quite energized by the meeting. I decided to talk. I said to them, “Hi, I just came from the same support group you were both at, and I heard the both of you tell your stories. I didn’t realize until after I had been in the group for a while, that I actually had stepped into the wrong meeting. I’m a brain tumor patient and my intention was to go to the Brain Tumor Support Group, it was my first time here and I wasn’t sure at first if I was in the right place or not, I thought maybe it was a mixed group at first-once I was sure it was just for aneurysm patients I didn’t want to disrupt the group by walking out. I wanted to tell you both that while I feel many things we’ve been through are different-I feel that there are definitely quite a few things that are the same, and I think I understand a lot of your fears and anxieties. I haven’t had an aneurysm, but I’ve been living with a brain tumor for over twenty years, I’ve had two surgeries, and two courses of radiation. I’ve had many of the same health issues that you’re both dealing with and some different ones…the forgetfulness at times, headaches, my tongue is paralyzed on one side, I’m deaf in one ear, I have trouble swallowing, one of my vocal chords is paralyzed, but I’m still here. I’m still talking. I still hear you when you speak. In these twenty plus years I’ve seen my two kids go from small to not as small. I work. I’m still living. I don’t know if that helps you, but I thought I would mention it just in case it might”. They both said to me “Wow, thank you so much, you would never know you had all those physical things, thank you so much for telling us that”. We said goodbye to each other, and I said to myself “wow, this has been quite an evening, I can’t believe I would have experienced anything more meaningful at the meeting I was intending to go to”.

I’m glad I stumbled into that meeting…these things like so many things, don’t seem to happen by accident. This support group supported me by making me feel that all that I still deal with…isn’t a curse, it’s a gift…I’m still here in the world… getting to deal with myself, while there are others that I’ve met along the way who are no longer in the world.

Dr. Langer’s statement about brain tumor patients generally not being able to live long enough to worry about their symptoms, just reaffirms the need to do all we can do to bring attention to the need for more funding and research for brain tumors. Please donate. When I started my walk back in October of last year and filming that walk, I knew that would be the beginning…the first step. I’m now in the process of raising additional funds in order to continue filming; we want to film other survivors, other patients and their families, and to tell their stories. We want to enlighten people about what’s going on in the world of Brain Cancer Research, there are some amazing things happening. We hear about breast cancer, prostate cancer and other illnesses, we hear about them because people live long enough to talk about them. We don’t hear as much about Brain Cancer because we don’t generally live long enough to worry about our symptoms…or talk about the cause. We have to work together to make that happen!

Friday, March 9, 2012

The Strength of Words

I just had a moment, more than a moment, a weekend really, where I thought I had lost my blog. This blog is a compilation of stories and thoughts that I’ve written over the last four years…four very intense, life changing years. I have of course saved most of these stories-these words, but the thought of them no longer being out there for other people to read if they wanted to read them made me feel as though part of me had died. I realize that this may seem overly dramatic to some, but these stories and thoughts are “me”, they are not fictional, and the idea of them disappearing, was somehow as though I had disappeared. Also, the thought of having to re-up the entire blog, was another project that I would have to add to my ever increasing “To Do List”, and that too, made me feel like I might just disappear…or need to. There have been days lately, with all that I’m trying to do, that I just wish for one less thing…not one more. The blog had disappeared because it was attached to an old email address that after ten years I had needed to change. I thought that all the accounts, credit cards, and necessary contacts that required the new address…had the new address, but there’s always that one something that falls through the cracks, my blog was the something. Most fortunately, I was able to retrieve it. This retrieval was not easy. They don’t make these things easy. The internet giveth, and it taketh away. It is hard for instance to find an actual person to speak to, instead you are left emailing, which is frustrating and time consuming. These emails are signed with a name, it seems like a person has connected with you, but after enough back and forths, one comes to doubt whether that person actually exists. I was not certain for an entire day if I would be able to retrieve my lost information or just my lost “domain name”. This was a BAD DAY. But, in the end, after very little communication, limited help, and a decent lump of cash…the entire blog was retrieved…name and all. This was an AMAZING DAY. This was the giveth part of the taketh away. This story has been shortened for those that may be reading it, and are patience impaired about such “internet matters”, but I feel the core of it has been conveyed. This event made me think of a few things. It made me think of all that I’ve written and what it’s meant to me. It made me think a bit about how as much as I’ve felt at times (and I’ve mentioned this), that nothing can be better than being able to express your thoughts through words, I have to say that during this most recent “blog event”, where I was virtually forced to write while dealing with my “internet blog problem”, the thing I wanted to do more than anything was to speak my words…yell my words-not write them, and yet writing was all that I was being allowed to do. At times, it’s good to have a voice to one’s words, to be able to convey your supreme unhappiness, anger, and disappointment. This is something that can’t be expressed as fully or as well without…let’s face it, a little bit of volume. Perhaps we want what we want, when we want it. No news flash there, I guess. And lastly, I think of all those words and sayings I’ve read over the years, not just these four years, but the many years that I’ve been dealing with my health issues-the words that I’ve read that have inspired me and motivated me, the words that have helped me feel as though I wasn’t alone, or have given me the impetus to keep on, keepin’ on. These are some of those words:

“If opportunity doesn’t knock, build a door”
-Milton Berle

-Never doubt that a small group of thoughtful, committed, citizens can change the world. Indeed, it is the only thing that ever has.”
-Margaret Mead

"Never bend your head. Always hold it high. Look the world right in the eye."
-Helen Keller

"Strength does not come from physical capacity. It comes from an indomitable will."
-Mahatma Gandhi

"Greatness lies not in being strong, but in the right use of strength."
-Henry Ward Beecher

"He knows not his own strength that hath not met adversity."
-Ben Jonson

"There is no limit to what you can imagine. And with commitment, with effort, what you can imagine you can become. Put your mind to work for you. Believe that you can do it. The world will tell you that you can't. Yet, in your belief you'll find the strength, you'll find the ability, to do it anyway."
-Ralph Marston

"You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, "I lived through this horror. I can take the next thing that comes along." . . . You must do the thing you think you cannot do."
-Eleanor Roosevelt

"Above all challenge yourself. You may well surprise yourself at what strengths you have, what you can accomplish."
-Cecile Springer

“I alone cannot change the world, but I can cast a stone across the waters to create many ripples.”
-Mother Teresa

"No one has ever become poor by giving."
-Anne Frank

“It is not length of life, but depth of life.”
-Ralph Waldo Emerson

“Success comes from knowing that you did your best to become the best that you are capable of becoming”
-John Wooden

“Be the change that you wish to see in the world”
-Mahatma Gandhi