So many reasons to live, so we do. So many reasons to give up, but we don’t. Sharing space in your head with a brain tumor – even if it’s been removed – changes who we are.
Getting the diagnosis that there is an alien inside what we perceived as an solid body part that’s already filled to capacity begins the change. Living through treatment that penetrates that impenetrable cranium tests our will to live in ways that we never imagined. Living through treatment is what is implied – living and not dying.
Recovering from treatment tests our longevity and patience. There are no quick answers. Healing may be stunted by limitations of our bodies to regenerate parts that were not meant to regenerate. Parts that were slowly damaged, unknown to us, by that selfish alien. A tumor that doesn’t care what it pushes around or damages to find space as it grows – until it demands to be recognized.
Fatigue can be overwhelming. Our minds are foggy until the sleep that our brains demand is paid in ransom – regardless of how we wanted to spend a day. Fatigue helps us prioritize and give effort to only what is important.
Depression can come – and go – in an instant. As suddenly as a balloon flying high and free and then popped, deflated and fallen to earth. The culprit could be a new diagnosis, a new drug that doesn’t work, or a hope that is dashed. When depression lets up, even for a short time, joy is more joyful and fun is more fun.
Balance is a challenge. While the opposite side typically takes over, it requires more time to catch our bodies when tilted or turned. Balance teaches us to know our body and be deliberate in our movements.
Pain may be constant, unrelenting. Not a welcome giggly friend, but a constant companion. The lack of pain can provide a gleeful relief that is recognized and savored.
Single-sided deafness is puzzling. How can noisy settings be louder when only one ear works? Single sided deafness – good ear down – shuts out the world for a period of time leaving only the frustrating yet fascinating sounds of tinnitus.
Facial paralysis is something we learn is a journey, not a point in time when it ends. As we learn to accept our inability to express ourselves, our faces either stay flaccid or morph and feel pain. Facial paralysis is something that teaches us the value of relationships and the value of what’s inside.
With the miracles of today’s medical science, it slowly dawns on us that while we look for a fix, the medical world can only search for a band aid to cover ongoing, long-term issues. With the miracles of today’s medical science, we recognize we are alive and survived.
We are like leaves. Some of us are strong and survive growing, blowing, and falling from trees. Some even stay pristine as fall leaves being walked on. We absorb whatever life throws at us. Others are brittle and crumble despite all attempts to hang on. We don’t know what type of leaf we are until we fall or get blown down.
Life is life and we cherish it. Each day when we touch nature or another person emotionally, or with a big hug – it is another day we live, love, and breathe. Even as brains share space with the unknown, our hearts share living.
Very well said, Sally! In many ways, every single day can be a challenge for us. I know it is for me, and yet many of my loved ones continue to think that I am the same as I was before. In some ways I am, but in many ways, I am not. Thank you for writing your book and for maintaining this blog. It is incredibly comforting to know we are not alone!
I’d like to give you a hug right now.
I feel it, Kathy!
Nice to see another blog written by you. You put in words so eloquently what most of us think and feel, but can’t find the right words to express.
Lindo texto voce sabe nao sou operada mas sei que algum dia irei para radiocirurgia. Sinto muitas coisas, agora sou surda de um lado, desequilibrada tambem, mas vamos vivendo. Abraços. Suely
Sim – nós vivemos!
Wonderful Sally. So well expressed. I’ll share this with our San Diego support group.
Sally, you write so beautiful,true and from your heart. I was diagnosed with my AN a few years ago, 2.1 cm. I probably had it for 8 years or so. Your writing paints a wondrous picture as you one reads your words, they resonate with me. Wow! Thank you so much. Funny how sometimes I know words and at other times, I can’t think of the word for my phone from fatigue, etc. You have a natural gift.