Sunday, May 10, 2009

And maybe that is what true strength is?

What I would not give to be living a quiet life with David and Alec. Romping in the sunshine. Going on road trips with the tunes playing loud. Living the life I had imagined. But life is not always what you plan. I say that frequently, almost ad nauseum probably, but its true. I am learning that does not mean your life is over. It just means the life you originally envisioned is gone. But with each end there are new beginnings…

The dream of our life together is gone. Like grains of sand in my palm, one big gust came and scattered them into the wind. The life of us growing old together is a path that will forever go untraveled. We came to a crossroads and David got off. He got off way too damn early. And I am here.

I stopped ever so briefly at that crossroads, lying on the ground...curled in the fetal position. Wishing the pain would just end. I cried and cried until I felt there was no more tears left it me. And yet somehow there always were more and the tears would come again. My soul felt empty and I was spent and tired from the years of worry, caregiving and grief. I contemplated not moving forward. Not moving on. Just stopping. Everything. But that was a transient thought. That damn resilient nature of mine forced me up, picking my ass off the ground and shaking away the utter blackness that threatened to consume me. I stood and with no clue what the hell I should do or where I should go I began to blindly put one foot in front of the other. I picked a random direction, put my head down and barreled forward.

I find I am no longer running blindly anymore. It is more of an amble now. I am meandering along, no longer slumped with my head bowed against the winds that threatened to take me down. I am looking forward. Looking around. Checking out the scenery as I go. Finding new music. New friends. New adventures. New Dreams. Moving on…

Some days I feel like the energizer bunny. I just keep moving. People say I am strong, but often I think it is more that I am too damn stubborn to give up. It keeps me moving like it kept Dave moving. Dave could be one stubborn man. Mind you, that gave him immeasurable strength. And that coupled with his intense will to live made him a supreme fighter. And yet, as he began to decline, it was a bit to our detriment. It made caregiving quite a difficult task for me some days.

And I have come to realize that honestly I am just as stubborn as he was. Some people say I am tenacious. I think that is just a nice way of saying I am an obstinate pain in the ass, but that too has helped me I think. It has kept me moving forward despite the circumstances because there was no way I was going to let this take me down. That fucking tumor took Dave down, so I will be damned if I will let it take down the rest of my family as well. I know. It is a tumor, not a person…not a living entity. But sometimes it did not feel quite that way. The tumor seemed to take on a life of its own as it began to send those tendrils deeper into David’s brain, slowly taking his life. It would move around obstacles we placed in its path, almost laughing as it got a deeper hold into him. It was not just a mass of mutating cells. It became this beast we were all unsuccessfully trying to contain and tame. I know some brain tumor patients who went so far as to name them. We never did that, but we felt its presence in our life for the remainder of David’s days.

And now here I am. Writing about this journey…the journey I began with David and that I now continue alone. I am constantly astounded that people read this blog. Seriously. I never considered myself a writer. Albeit, after going back and reading the beginnings of this hellish nightmare in June 2006, I can clearly see my writing style has developed and progressed since those days. But often I do not know what I will say when I begin these posts. And invariably the post I originally intended to write does not get written once my fingers hit the keyboard. Everything rattling around in my head just seems to flow out when I sit down at my computer. This is my heart and soul that I pour out onto these pages. I open myself completely here for everyone to read; because ironically it is so much easier for me to do this here that when I am standing before you.

And yet some days I feel it is utter insanity that I can journal like this. Putting all my pain, hopes, fears, and insecurities out here for the world to see. I am touched that people have found hope and comfort in reading my words. This blog has helped sooth not only my aching heart, but has helped refocus my jumbled thoughts into some sort of cohesive structure.

In those first few months where time was meaningless and many sleepless nights were spent at this monitor, it was a place where I could channel all of my pain, fear and loneliness. And along the way I found people out there who were listening as well as others walking a similar path.

Many of you have helped me feel less alone on this dimly lit path I travel. So I thank those who have continued to stop by for a read, despite the dark roads my mind took me some nights. The listening without judgment and the unconditional support and love that has and continues to surround me is precious. The kind and gentle reminders that I will survive this and that although even to this day I do not always believe it…I am strong. Stronger than I will ever probably give myself credit for.

Some days I still feel fragile. Like my heart is made of glass and that at any moment it could burst into a thousand shards. And some days I feel as if acknowledging that vulnerability will somehow weaken me. I fear that if that were to happen, I might stumble and fall. I know there will be people to lift me up if I do, but I do hate to fall. It is messy, painful and I get all bruised and banged up.

I also think I fear people seeing that vulnerability. I have this crazy notion that somehow I have been keeping up this great farce and someday everyone is going to stop and say…”Hey, wait a minute. She’s not that strong. She is just as scared and fragile as the rest of us!” And I am, you know. I may have an inner strength inside me that burns brightly, but I too am fragile. Sometimes just needing strong arms to wrap around me, sheltering me from the storm once in awhile.

I keep my head held high. I keep moving. But that is not to say I still do not hurt or mourn. It is just my damnable nature to keep moving. Keep dreaming. Keep fighting. Some days I used to think it would have been so much easier to give up, but that goes against everything I am. So I trudged on.

But I find I am more at peace these days. I am embracing more quiet moments of just being. Life is full of more smiles. More laughter. More hope. A future. I am finding my way and learning more about myself everyday…and that is something. And maybe that is what true strength is?


At May 11, 2009 12:19 AM, Blogger Star said...

I actually like the word "determined" to describe myself. Strong is something I thought I was before. But I think its more the stubbornness you write about. But I like to called it determined. As long as I can find a little hope, I hold on to it tightly and just keep going for the duration.

At May 11, 2009 8:28 AM, Blogger Satine said...

It's true--what you say about "just being" and what true strength is... sometimes the waiting and the sumbission to life is exactly what we have to do to be more "ok." I, myself, have been trying to find the joy in little things, and REALLY take hold of that joy--allow myself to completely embrace those tiny moments as though they were absolutely huge, because then they become really big and I find myself much more happy overall, even though it's easier to dwell on the sometimes all-consuming-misery in the world really... it's easier, but it's not anything more productive, and so I've been really trying to embrace what makes life special to me. I hope for the same enlightening feelings and spark for you.

At May 11, 2009 11:16 AM, Blogger Betsy said...

Skye, I don't know you in real life, but am one of those finding hope in your words. Just being takes a lot of energy, doesn't it? You are an amazing partner and mother to withstand the pain of David's death, shepherd Alec through it, and be able to find joy in just being. I learn so much from reading your words - thank you for sharing so freely.

I am on a similar path, but at a different point. My husband was diagnosed with a glioma tumor in 2008 at age 30. We're learning how to deal with uncertainty and good days and bad days in his/our physical and mental health. Living and loving in the moment is a challenge but such a wonderful blessing when we are able to do it.

Again, thank you for sharing your thoughts and journey.

At May 13, 2009 10:38 AM, Blogger Skye said...

My heart goes out to you. When I read your words, I cried.
I am honored that you are able to take something away from this blog and hearing it can help others on this journey means so much.

You too must be a strong and amazing woman. To live and love in the moment is a testament to you both! Sometimes it can be a daunting task given all the curve balls life and cancer throws at you. But I send you love and strength in the days ahead.

Although we may only know each other in the ‘virtual world’ of the internet, know that you are welcome to email me anytime if you need an ear to bend on this difficult road you travel…

At May 13, 2009 3:57 PM, Anonymous Roads said...

I am learning more about myself everyday…and maybe that is what true strength is?Self-awareness is such a gift that you can take from this. You know that you are strong, just as you know that you are weak.

Equally, you don't ever 'unlearn' perspective. It might (and surely will) fade away, later on, into a quiet recess -- unacknowledged and undemanding -- and then it'll re-emerge at unexpected moments in the future.

Simply put, experience like this changes how you think about almost everything.

Do all the people around you see you as strong? I'm sure they do, and that's a tribute to how well you're coping.

But the better you seem to cope, the more they'll assume you're doing fine. And then naturally you want to remind them that really you're fragile underneath -- because it absolutely isn't easy to get through this, however easy you might make it look.

It's paradoxical, but it makes perfect sense to me.

I can relate to that

At May 14, 2009 12:39 PM, Blogger Satine said...

I had a dream and you were in it. Dave's parents were in it too, and in my dream Dave had a brother and he was in it... and I was really choked up--they lived in a mansion and after Dave passed on you lived there too. And I remember talking to you and you tried to be brave and give me a compliment or something in hopes of appearing "positive" and said something like, "you're hair looks nice... real nice..." and I thanked you, but as I left I saw you were crying too. I was so upset in my dream due to Dave's passing and for your loss that I woke up gasping for air, thinking I was unable to breath as I tried to hold back tears in the dream... so, I can imagine that although to some you seem strong, in truth you ARE BRAVE, but that as anyone who is brave, it's because of a tragedy and all tragedy creates enormous loss... and I still feel for you. Always will.

At May 15, 2009 1:38 PM, Blogger Anna said...


I can't remember how I found your blog, but when I did I went back to the beginning and didn't stop until I reached the most current post. Of course I knew what the 'ending' would be when I started reading, and yet, I found my self hoping, wishing that the news would be good. It is so apparent that your heart and soul are poured out in each and every one of your posts - thank you for that. Your blog is one of my favorite to read and I am silently cheering you on as you find your way forward.

Hugs -


At May 27, 2009 2:37 PM, Blogger Skye said...

As always thanks for checking in and writing with honesty and compassion…

I identify with your own journey. Seeing where you have been and the many adventures you have been on since your own life was derailed so many years ago. Your unique perspective on life gives me insight, hope and courage. Many thanks…

At May 27, 2009 2:38 PM, Blogger Skye said...

Wow. I am amazed and honored that you went back to the beginning and read it all! You probably know me better than I know myself at this point.

I have gone back and read snippets of older posts and sometimes I do not even remember writing them or they seem like a lifetime ago. I have found re-reading them has been both somber and healing at the same time, ironic since I wrote them as well. Looking back to see the many stages our life went through, the progression of the disease and the amazing power love has to pull you through anything.

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At December 25, 2016 1:23 PM, Anonymous said...

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