These are some of the blog entries that I’ve written over the years that have to do most specifically with my experience with doctors, my having had Proton Therapy in 2008, hospitals, as well as my upcoming preparation for Walking Miles 4 Brain Matters and being on that walk. Go to www.myedgewalkerblog.com if you’re interested in reading more about my experiences as a patient, or the rest of my “regular life”.
This walk is about so many things for me…
It is about what I’ll be able to give to others…and to a cause that I know needs more funding…and that not many other people either know about unless they themselves or someone in their family has been effected by a brain tumor. In fact, even if they do know about brain tumors, they may not know that there’s such a need for more funding or research. This walk is also about something else. This walk is about achieving something…it’s about the feeling of overcoming something. It’s about being able to feel the feeling of gain after so many years of feeling the feeling of loss. I have the potential to feel strong, and the fact that it’s not just for me and it’s something that I’m also able to do for others, just makes it feel like that much more of an accomplishment.
In the research I’ve done about people who have had life threatening or life altering illnesses, the feeling of loss is quite normal, but knowing about its normalcy doesn’t make it less painful. You’re not sure what to do with these feelings. Recently a few “normal” things happened to a few friends of mine. A couple of my friend’s fathers died. Another friend’s friend died…he wasn’t that old. All of my friends were going to the funerals. I haven’t been to many funerals. Another good friend of mine on the 5th anniversary of her husband’s death was going to visit a place the two of them went to all the time together. I liked the idea of this; it got me thinking about these ceremonial rituals. There was something that seemed important to me about them. I didn’t grow up in a family that had many passing rituals. I’m from a small family and fortunately most of us are still hanging in there. It’s not like we haven’t had our share of sad times, we have, but we’re still here, that too says something about us I think-about our fortitude, our stamina, maybe even a bit of luck. I’m not entirely sure what it says, but it seems to say something…it’s another blog for another day. We do have our rituals, just not for passing. We celebrate birthdays, anniversaries, Thanksgiving, but “passings” or “loss”…these occasions I’m not so familiar with…except for our pets, we have had burials for our pets. As I mentioned, we certainly had our share of bad things that have happened, but we were more of the attitude that you kept on keepin’ on, and so we did…so I’ve done. For many years with the exception of a few friends who’ve lost a parent early on, or in very extreme cases a friend of theirs, I was one of the only people among my group of friends that has dealt with so much personal loss so early on…now that we’re all getting older, everyone is catching up. Lately though, I’m seeing more of the ceremonial side of things, and it made me think.
I decided to anoint a small beautiful glass jar that I have; this jar would now be my “Jar of Loss”. I had some sea glass that a close friend of mine has sent to me over the years from places she has traveled to from around the world…she knows I love sea glass. I chose a specific piece of sea glass to honor every loss I have experienced, and I placed it in my new Jar of Loss. There is a piece of sea glass in this jar for every loss that has deflated me, every person that has left me, every ability I used to have that I no longer have…my hearing in one ear, my vision in one eye, my voice that I feel has been altered, the house I loved, the company I created but couldn’t keep working at because I had to have surgery and radiation therapy, every thing that I felt I had lost but could not control losing. Some how this made me feel better; it has made me feel ready to move on in a stronger way. This jar gives me the ability to see these things, to have them with me and yet not, to look at them in a physical kind of way if I wish to, but not feel the same morbid sense of sadness that I had before…it’s different and it feels better.
This walk is a way to feel a renewed sense of emotional strength. I will remind myself of that on the days that I’m walking the 250 mile distance starting October 1st from my house to Boston, when I feel I can barely take another step forward. Yes, it’s been exhausting planning this walk, and yes, I wish I had even more time to plan things, but in the end I need to leave when I need to leave. I need to move on to the next phase of my life and to the next phase of the non-profit charity that has taken me so long to create. Most of my life I have felt physically strong, but the months following surgery and radiation I felt weaker than I had ever felt in my life. I wondered if I would ever feel like myself again. Then I realized, I won’t feel like that self anymore, I will feel like a different self. Why wouldn’t I feel different after what my body has been through, and also the fact that I’m older. But I have learned to row with the oars that I have. There are many people who don’t survive having a brain tumor. There are many others that do survive but are never able to work again or talk again, or remember anyone, or do many other things-but there are still plenty of us who can. There aren’t any others I believe that have made a walk of this length, and at the same time have tried to help bring awareness to the very reason that has caused them tremendous loss. I look forward to being able to walk and to blog my experience every day, and to posting it on the Brain Matters website so that I can look back on it and remember my experience and my accomplishment. I also wanted to be able to do this, so that my family will be able to look back and see this when I’m older or when I’m not here one day…a long time from now of course. There have been many concerned friends and family members since I decided to make this trip that have tried to convince me not to make it, and I would not budge. I understand that they’re concerned, considering my medical history, but there have been so many things that I have felt that I’ve lost through no choice of my own…this is something that I’ve actually chosen to do. I’ve taken two years to plan and coordinate this walk. This is about Giving Back and Getting Back. If anyone wants to join me, please do, I’d be glad to have you. To follow the walk and know where I’ll be on what days go to www.brain-matters.org