Acknowledging Sadness Is Not Only Our Right, It’s Our Responsibility.

 We were in the lobby of our building. Patrick was getting the mail. It was about 10:30 in the morning. I was at the concierge desk, and Patrick was waiting for David to arrive so they could work out in the gym.  The young man behind the desk, Ryan, was telling me how much Patrick inspires him every day to live a fuller, braver life.

“He’s come so far,” he said. “I remember him in that wheelchair, with the helmet. But seeing Patrick on the boardwalk the other day, moving with his walker… it just made me feel good inside, you know? No one has ever inspired me like Patrick,” he said. “No one.”

It was a testimony that I never grew tired of hearing. I smiled and said to him, “I knowMe neither.”

Patrick was at this time, maybe 30 feet away, when I heard him call to me.

“Andrea, something is weird.” I suddenly felt my heart stop. “Weird…..weird how?”, I asked. “Like seizure weird?” Patrick had been off Kepra, an anti-convulsant, for 3 days. The medication had been prescribed prophylactically at the time of his accident. He had never had a seizure, and was experiencing ugly side effects, so we’d been attempting a trial to see if he was indeed epileptic and needed the meds.

“My left arm is shaking,” he said.

I ran over to him, telling myself it wasn’t going to happen. But it did, and all very quickly. “No…no… no… this, t-t-this is bad I f-f-f-feel….something’s wr wr wrong…get the kepkepkep…” I knew he was beginning to seize, and all I kept thinking about was how to get him on the floor. He was still conscious so I thought it was going to be a partial seizure. “Ryan! Get me a wheelchair! Hurry!” 

We sat him down as the shaking intensified. My heart was pounding in my ears. It was like watching my lover be sucked into a vortex of suffering; a black hole of darkness, a drowning without water, all while he fought against the pull of it. His eyes on mine, wide and terrified, pierced me with that last look of consciousness, and then he yelled “HELP ME,” letting out a horrendous sound, like an animal being cut open alive, and went into the full blown, grand mal seizure. His left arm wrenched shut, his eyes half-closed, and he shook from top to bottom. His mouth foamed as he made small, constant, inhuman noises. 

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Seizures are scary. Very scary.

I had watched absent, partial, complex, focal, and grand mal seizures online to prep myself for the day I might come face to face with one. But no amount of prepping can prepare you for the experience itself. This is because those people online are not your child, mother, friend, or lover. And in a world where a TBI survivor suffers every single day, and you their partner, lives to take the pain away, this is as helpless as it gets. You are reduced to a bystander. All you can do is watch and wait it out, while time moves like it’s been suddenly flash frozen. 

I timed the seizure; 7 minutes.  Another woman from the front desk came and helped us get him out of the chair, and lay him down on his side. (It took 4 of us to do that). I called 911. Perhaps I was being oversensitive, but it felt like the EMTs were unusually cold. They walked in not even in a hurry. As I tried to explain the nuances of the situation they looked at me a few times like I was a total idiot. As they went to lift him onto the gurney they said, “Do you talk? Hey… (looking at us) does this guy talk at all? Can he say anything?” I felt my blood boiling at the casualness of their tone. And I wondered to myself yet again, when at the mercy of the health system, why is it so easy to feel like you are not even a human being but rather a case, a number, a trial, a stack of paperwork, or just a job? 

When Patrick came back to us, he couldn’t speak. He couldn’t move his left side. His eyes were still wide and helpless, and the impairments reminded me of his acute injuries, and scared me shitless. Was this permanent? How long would it take him to return to his TBI normal? An hour? A day? A few months? The possibilities were terrifying. 

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I love him with everything I am.

Luckily, after a few hours in the ER, and a cat-scan that showed no masses, tumors or worries of any kind, Patrick was coming around. He could speak again, and move his left side, but everything was weak. They gave him a dose of Ativan to stop the abnormal electricity, and a megadose of anti-seziure meds. His neurologist was contacted and it was suggested he go back on his regular dose of Kepra. So, we did. I watched the drugs, take the wild, beautiful spirit from his eyes and replace them with a dull, faded look to which we had both grown so sadly accustom.

“So sadly accustom” is an interesting choice of words for me to use at this moment. I wonder, if my subconscious is trying to alert me to something. Yes, it’s true. Tonight, as I lay in bed beside Patrick, I recognize an emotion coursing through me, that these days I rarely allow myself to go to: sadness. Sadness is perhaps for me, the toughest of all emotions. To go there can wipe you out fast, and not many caregivers have energy to lose to it; not at two years out, anyhow, when life demands you keep pushing on. So, I will go to any other emotion to avoid sadness, to overlook it, to pass around it, rather than through it. I succeed most of the time. But when I go there, I recognize how powerfully true it is, this sadness, and how it is owed its time and reflection within me just as much as any other emotion.

Our lives with TBI are impossibly hard, and impossibly hard has become our new normal. We are just 33 years old, and instead of following our dreams, we are making trips to the ER for seizures, trips to doctors offices for check-ups, and trips to government agencies for food stamps and disability checks. We feel invisible in a world that doesn’t even know what TBI is, let alone what it’s like to live inside it. We feel like there is no relief, no recourse, no way out of any of it. There is no full recovery, no going back. There is only improvement. And improvement is what I have centered our lives around, but sometimes I wonder when the pushing ends and acceptance begins.

I am tired of fighting. Tired of being strong. Tired of seizures. Tired of doctors who treat me like I’m no one because I’m not a wife, not a mother, not a sister. I’m tired of watching my boyfriend suffer. I want relief for him. I want him to have the life he deserves. I want us to be free. And that’s ok. Because this isn’t about playing the victim or throwing a pity-party. This isn’t about wanting people to feel sorry for us. We don’t want any of that shit. This is about acknowledging sadness. And that is not only our right, it’s our responsibility.

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It’s ok to be sad. It’s only an acknowledgment of a temporary truth.

My love for Patrick is the most amazing, beautiful, life-altering, all-encompassing, teacher I have ever known. It is an unfolding, blossoming, flower, bathed in continuos sunlight. And nothing, nothing we go through takes away from it. The suffering and hardships only make the roots grow deeper, and the fragrance that much sweeter.

But tonight, my heart aches for him. I close my eyes and all I can see is him seizing. Over and over. Lurching. Shaking. And me, standing there, powerless. I open them to get relief, and close them when exhaustion takes over, and the cycle just repeat itself.

I hope I feel strong again, tomorrow.

Discussion

Comments

6 Comments

  1. Mary

    You are an amazing woman and he is very lucky to have you! We have similar stories but mine involves my only child. He was assaulted in June 2013. Coma 5 weeks, relearn EVERYTHING. Long way still to go. Sometimes it is hard to show the sadness because I need to be the strength for him. Our motto right now is “It is what it is”. Fight the good fight and you are not alone. Thank you and God Bless

  2. Anj Granieri

    I know what you mean. I try to show a very strong face for my Patrick. But its important sometimes to be real with yourself about the struggle… you matter too.

  3. Judi Lamoreaux

    I find a way to avoid my sadness also. It’s such a dark place to visit, I only stop for a moment there. It makes my heart bleed and hurts like hell.

      • Hi Mina, Thank you for writing, as you do, from your heart My TBI also has it’s roots in January three years ago I had my third brain sreurgy which was when my TBI became fully apparent And so, January also holds similar significance for me. To New Beginnings!XO-Trina

  4. Oh my- yes seizures are very very scary.
    My daughter survived encephalitis at 3yo and your words brought me to tears.

    The sadness somedays is just overwhelming because “it isn’t meant to be this way”
    I knew my daughter before Encephalitis and I loved the way she smiled, her soft voice, her personality- & yes I’m grateful she is ALIVE and with me- EVERYDAY but I miss HER & I am sad, so very sad.

    Thank you for your words. You are not alone and it is good to know I’m not too.

    Hugs for you both today & prayers for seizure free days. xx

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