“I am not okay! I AM NOT FREAKING OKAY!!”, he shouts with voice strained from guttural weeping, tapping hands on ears, curled into an upright fetal position, never losing his pace in his rocking.
“I…I…I…I…don’t…want…to…*gasp*…live…this…way…any…more. Why?..Why won’t He?…Why won’t He…take…me home?…He wants…me…here…His story, right? His story, babe…”
If ever you find yourself wondering why the blog is silent, it is this. This is life with brain trauma. One minute everything is fine, and the next, something triggers a panic that Jesse’s brain cannot quite process; and he’s spiraling downward into an emotional puddle of broken human too weary of an onerous fight, longing to be rescued from a lingering life of illness.
I’ve decided living alongside a cancer diagnosis can be likened to living in the eye of a hurricane. Both peaceful and daunting as all of the ugliness of disease and the fear that comes with it swirls menacingly around you. You’ve survived the torrential rain and wind and water swell of the initial landfall, and now you are in the eerie calm of the eye. You’re living your new life of picking up the broken pieces, and trying to reassemble your existence into something that resembles normality…and then you look up and remember where you are. You know that, at some point, the rest of the storm will come roaring over you with deafening fierceness, but you are never quite certain when that moment will come. So you focus on the peace of the moment, doing what you can to prepare, looking up at the blue sky and bright and warming sun above you; and you wait.
There is nothing to do sometimes but wait, to batten down the hatches and brace yourself for the storm that is to come, holding on to the knowledge that hurricanes only last for a season.
This is life with cancer. Real life with illness is not pretty. Every moment is not brave defiance of the effects of disease like you see on social media. Cancer cannot truly be neatly packaged into an inspirational video that makes you ponder the goodness of your life in light of the sorrow of someone else’s as we want to believe; not really. Cancer does not “feel” good to the people living it. It does not “feel” like a blessing any more than a tree wrecking your house during a hurricane does. But blessings do not always appear in the form we expect and feelings frequently betray truth.
I have another friend who is now walking the cancer path. Another one. “How many is that this month? Two…Three…Four? When was she diagnosed? No, wait, that was last month…” I’m not sure how many there have been in my own circle this year alone. Their faces flash through my mind so rapidly; it’s difficult to count.
A friend sent an update on his newly-diagnosed-with-breast-cancer-wife to me a few days ago about her recent surgery, procedures to come, and current prayer needs. In it, he made this statement about what life is currently like for them:
“Every now and then the enormity of it all hits home…and it’s hard to accept.”
That line. It’s such an accurate description of life with an acute awareness of the short and sacred nature of life and the grief and hope that exist in this mangled mess of existence. It’s enormous, this cancer life. Big, gigantic, hurricane-sized. And after the storm passes by and you are reassembling the salvageable remnants of your former life, it is still not the same. It can’t be.
“No matter what’s put back, it will never be the same.”, said he of his wife’s reconstructive surgery to come.
“…you are very right…no matter what is put back, it will never be the same.”, I replied. And so it is with cancer. “Even when the outcome is good earthly healing…”, life is never the same.
Two hours later and Jesse had returned to himself, happily singing along to worship songs while organizing tools in the garage, blissfully unaware of the depths of his undone before. His brain has healed enough for him to retain some awareness of these emotional moments, but he never quite remembers them as fully as I do. A gift, I am certain, to him as he works diligently to retrain his brain to comprehend. The Lord made the human brain amazingly resilient and capable of rewiring itself. We have witnessed outright miracles in the past year as Jesse has made huge, unexpected strides in speech and comprehension. Tomorrow marks 12 months since his second brain surgery, and though we are often exhausted from the relentless nature of all of this, we remain grateful for the year we did not expect to have. I have learned to be thankful for those very hard moments when Jesse’s brain loses its bearings and his emotions get out of whack, those moments when he looks to God and asks to be taken home, and fights to stay here anyway…because those are the moments when I see most clearly the sufficiency of the grace of the Lord and the power of His hands to sustain and grant peace, even in the most wheezing breaths of my life. Those are the moments when I get to witness this passage lived out by my beloved:
“Three times I pleaded with the Lord about this, that it should leave me. he said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.’ Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong.”
2 Corinthians 12: 8-10
A few days ago, Jesse turned to a friend who asked him how he is doing and warmly responded with, “It’s hard, man! Paul had the mess beaten out of him his whole life. He was messed up! But God used him. He used him. I don’t always understand it, but this is His story. It’s worth it.” And so it is.
Pray with me over this man of mine?
-Ask the Lord to continue to heal his brain from trauma, to weed out all of the brokennesses and restore them to health in the ways He sees fit.
-Ask Him to mercifully bring a halt to the seizures we are still wrestling to control. They are physically painful for him to experience and emotionally painful for all of us to witness.
-Ask Him to give us patience and grace to endure whatever story He has for us to live out, understanding fully that every breath of suffering is used by Him for His glory and our good.
-And, as always, ask Him to bring healing to Jesse that causes others to claim Him as Lord. That is our most fervent, and enduring prayer. Lord, let Your kingdom come.
Will you pray with me, too, over two of my friends who have very recently put their feet on the cancer path? We would not have endured so well for so long without each of your utterances to the Lord on our behalf. I know they will be blessed by your prayers, as well. Pray for them by name, will you? For the ones who are ill and the ones who have assumed the role of primary caretaker and their children and very near and dear loved ones:
-Jeff Brantly (who I referenced in this post) and wife Cindy (battling breast cancer) and their two children
-Rich Lewis and Amie Biggs Lewis (battling breast cancer) and their two children
And you. I would love to pray over you by name, struggling friend. Leave your name and request in the comments, send me an email, send me a message on Facebook…use whatever avenue of communication you have. I will add you to the list of people the Lord has interwoven into my life and pray fervently that He work in your lives to see His name made famous. He loves you so!