Wednesday, July 23, 2014

The Glass Box

I hate saying this. I hate that this is the situation; that this is how I feel. But, this is a tumor blog and it's where I go to share my journey, so here goes nothing....

Tonight I went to a couples baby shower. It was at an understated, yet trendy bar full of friends. There was laughter, and hugs, and back slapping, and smiles. The celebration was for a specific husband and wife, but half of the women there were pregnant, so by default, it was a celebration for several along side. 

I got the chance to catch up with my beautiful friends, which was lovely, and yet painful. I even cried on the drive home, which is incredibly rare.

Throughout the evening, as I got caught up with people's lives, I couldn't help but notice the disparity between who I would be if I hadn't been diagnosed (a career, the ability to drive, financial stability, perhaps children). As I listened to people speak, with a smile on my face, I felt myself mourn for my old self. I mourned the person I could have been, of who I was on track to be.

I love watching my friends deliriously happy, so excited with their life's journey. But it's also confusing. It's uncomfortable that being around friends makes me both happy, filled with joy, and yet regretful, deeply saddened. I hate that I feel that way.

Currently, I am stuck on a hamster wheel of treatments and won't be finished for years. My life is lived in 4 hour increments, and I should be thrilled by that luxury since it implies that I'm doing well. But it is also extremely taxing. I can handle the stress when I live in my bubble, when I bound around the house being silly with Dan, or off jogging with Emma. It's times when I'm social that hurt too much. That make me feel isolated within a crowd. I can't relate. It's as if I'm in the room, but surrounded by a clear glass box. Alone. This girl who used to be incredibly social, even labeled vivacious by some, has morphed into an introvert. A person more comfortable by herself.

I am very grateful to be alive, please don't get me wrong, but I don't know if I will ever get used to living in limbo. I am putting all of my energy into these treatments, all of our money, and energy, and if they don't work then I will have wasted precious time that I could have spent crossing stuff off of my (yet to be written) bucket list. 

I hate that I'm so self absorbed that I couldn't even completely enjoy such a special occassion. Lots of "hate" in this post. I hate that too.


  1. Oh Jess, I am so sorry you feel that way. Your post brought tears to my eyes. I pray that you will beat this, that all of the clear MRIs are a sign of things to come in your life when you won't have to live hour by hour, worrying about having seizures (one of the scariest things you can go through) if you're stressed, etc. Sometimes life isn't fair. I remember that, for years, I tried to get pregnant, and to see others around me who already had children and inadvertently got pregnant but didn't mean or want to didn't make sense. Why was it that I wanted a child badly, yet couldn't have one, and others who had already been blessed with children didn't realize the gifts they were given? I know that it doesn't compare to what you are going through. Nothing that I have been through or that many have been through compares to what you are going through. have created this blog. You may not be social in person like you used to, but you use this as an outlet to vent, share your learning, and help others understand what you are going through. You are social world-wide! Your candidness is second to none, as are you. You are absolutely one of my most favorite people and I think of you often and miss you every day. You are a gift to so think that, through this blog, not only are you sharing and learning from others' responses, but you are sharing your learning with other fighters, those who don't have the knowledge or energy you do, and giving them a resource that they otherwise would not have had. Keep fighting, and we'll all keep rooting you on. You are the best and you are loved so much!

    I don’t know why I am inclined to share the following, but it was from an inauguration speech given by Nelson Mandela (that he did steal from someone else :) ), but nonetheless it is one of my favorites and is a good motivational thing to remember: Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness, that most frightens us. We ask ourselves, “Who am I to be brilliant, gorgeous, talented, and fabulous? Actually, who are you not to be? You are a child of God. Your playing small doesn’t serve the world. There’s nothing enlightened about shrinking so other people won’t feel insecure around you. We were born to make manifest the glory of God that is within us. It’s not just in some of us; it’s in everyone. And as we let our own light shine, we unconsciously give others permission to do the same. As we are liberated from our own fear, our presence automatically liberates others.

    Love you! Winnie

  2. Jess,

    Just wanted to let you know that your post made me cry! Mainly because I can validate that your feelings are spot on EXACTLY how I feel. I say this often, but your words seem to come right from my heart and seeing them on this blog validates my feelings and makes me feel so much less guilty for having these feelings. I have the "glass box" feeling so frequently now, and after this last 4th of July and more seizures that day, I just felt like the only place I can feel comfortable and happy now is at home.
    My world has shrunk so much since this diagnosis; that does not mean that my friends and family do not care about me, or do not invite me to activities and events; but rather that when I attend those events, I feel just so "different", like my self has been replaced by this person with a brain tumor. It is very difficult to find a way to come to grips with these feelings.

    I am so thankful that you take the time to document and share these feelings. The words I am saying here cannot change your feelings, but I hope you know how very important your words are to those of us in the same situation as you are in.

    I am grateful for you and so thankful to know that I am not alone in this strange journey that neither of us chose, but yet we are on this road together.

    Take care,

  3. Hi Jess. I too can completely relate. I actually feel more normal now than a few months ago, but lets face it, this will have changed us forever. We have a perspective on life that no one else has. Sometimes it is to painful to go out, I'm too afraid to travel, that the stress will cause a seizure. I long to feel truly carefree again.I have to believe that our day will come, hopefully with a cure, that will let us be free. Love Katie

  4. Jess, and all of you have made me cry!!! I have not faced your battles and with all my heart, I wish you were not facing them, but your words still hit my heart and fill me with compassion, empathy, longing, and a lonliness and displacement dwells somewhere inside me too, yet nothing compared to your journey. You are such a gift and I wish I could hang out with you and just be in your enlightened presence...that is how I feel about you...but I know I am so fortunate and I hate that you feel the way you do although it make total sense. I just wish I had magic to heal you completely so that your live could be lived the way you wish, in every way! You are always in my thoughts and forever in my heart!!


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