Bravery: A Lifelong Condition

My phone lights up with Facebook messages and it is the group we have named “The Real Housewives of TSC.” One of the moms just found out that her child has a SEGA (a life threatening brain tumor) that is growing yet again. The news is devastating. We are all reeling, because we were just talking about how this sweet boy was probably “out of the woods” with this tumor. Another mom chimes in with her shock and then adds that she is on her way to the hospital with her son, which will turn into almost a week stay. All this within 48 hours of getting home from our Novartis, Tuberous Sclerosis Blogger Summit. “Medically fragile” is a lifestyle for all of us and it is not for the faint of heart.

Disclaimer: While I was not paid for my time at the summit, my travel, hotel and food expenses were paid by Novartis.

The Summit was short, but things changed for me in those 24 hours. As everyone got to know one another there was a genuine warmth that filled the room… and lots of laughter. The unexpected thing about people who deal with suffering is that they usually have a wicked sense of humor. “Laughing so hard I am crying” is kind of a way of life for us. You learn to laugh anytime you get the chance, you learn to chase after joy instead of expecting it to bloom before you.

Oliver’s predominant issue with TSC is the seizures caused by the brain tumors. TSC is a very complex disease and affects a great deal of the body, but the brain is the most precious. A seizure filled brain has halted his development and fighting with the seizure monster is a daily reality. It’s a reality for all of us blogger mamas at the Summit.

Among Epilepsy drugs there is a somewhat well-known 30/30/30 rule. I realize the math is broken and I’m not sure where the other 10% goes, but bear with me. The idea is that for any treatment 30% of kids get results of no consequence, 30% get moderate seizure reduction and another 30% get wonderful results or even that miraculous gift of seizure control.

The 30/30/30 rule changes when it comes to brain surgery for Epilepsy...50/50 is the rule of thumb, especially when seizures are localized. So half the kids get a miracle and half of them do not. When Oliver had his brain surgery, sadly we were not part of the miracle half.

I am still on the hunt for a miracle for Oliver, but those percentages stare us in the face. The Summit gave me hope for mini-miracles though, as I heard what had worked for the other children. It was amazing how the same drug or therapy had wildly different results depending on the child. We discussed Novartis’ research on the mTOR pathway and their medication, Afinitor, which is meant to slow down or shrink those life threatening SEGAs.

Novartis’ education materials for TSC beautifully articulate the lifelong reality of this disease, but woven through the pages of the booklet, are the themes of curiosity, imagination, and bravery.  My favorite page simply states: bravery is a lifelong condition too.

I left the Summit with education, but also hope for those mini-miracles. I walked away richer in friends and more deeply connected to the TSC community, a community that has chosen this as it’s motto:

We will give everything, but up. #iamtsc

Heather, Laurisa, Tina, Becky & I

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Fast forward a few weeks home and I am in a seminar given by our company's wealth manager, Jason, at a local country club. He has flown in an expert on grief who can help us better communicate with our clients in their times of loss. Clearly, TSC has given me a more intimate window into grief than I ever wanted.

When it was over, I asked the presenter what to call my experience with Oliver. I knew I was stuck in some kind of continual grieving cycle and wondered if a grief expert had a term for this tortured experience. Was there a word for living in a constant state of uncertainty? She said the term is “ambiguous loss”. Finally some words for this…

The unusual thing about the Tuberous Sclerosis Complex is that you don’t necessarily move in a straight line towards healing. Let’s say when your child is young he develops seizures, but you are in the miracle half that gets seizure control. But he still has massive delays from the seizures, so you are constantly mourning the loss of the typical child. You watch him struggle with a sensory disorder that not only isolates him, but your entire family. But you eventually find a way to make your life work. Then at age 10 he develops serious complications in his kidneys. If you have a daughter, by the time she is in her 20s she may have life threatening tumors in her lungs, literally threatening to steal the breath from her. You know she will suffer greatly. There is just so much uncertainty, and no linear path to follow with this diagnosis.

I have written about TSC before and called it a minefield. I still believe that is the best analogy for this disease. You never know when one of the affected areas will “go off” and there is little you can do to anticipate.

Discovering ambiguous loss helped me put a framework around this experience. In grief work, counselors are looking to help you find closure. You can’t get closure in the middle of the battle, when the war is still raging. There is no such thing as a cease fire.

The greatest gift of the Novartis experience was meeting other moms in the minefields with me. Their faces now fill my Facebook feed and their steadfast spirits comfort me in the dark nights of loss and fatigue. Thanks to Novartis, we can see each other now, across the fields, even though all our battles are nuanced. We are alone and together, simultaneously. They got it right with their promotional materials: TSC is a lifelong condition, but bravery is too.

TSC Booklet 

Blog Roll:

Tina (Captain Jacktastic)

Becky (Mixed Up Mommy)

Heather (Life With My Princess)

Laurisa (Land of La)