Heinrich Barth: Living with Hope

This is my story, and it’s about hope.  But at the place this story begins, I wasn’t thinking about that. After all, who needs hope when life is all good?

Memorial Day weekend, May 2019. For the first time in twelve years, our four daughters and son are back with their mom, Irene, and me, at our home in Chester, a quiet Orange County town, sixty miles north of New York City. We talk and laugh, lots; hike and fish; take way too many photos. Forgive each other for past mistakes. It feels unbelievable to be all together. Too good to be true.

The following Monday, June 3, 2019, Irene and I spend the evening out with friends, arriving home around 10:30 PM. Irene heads to bed, but I’m not tired yet. I say good night to our youngest daughter, Sandra, who’s studying for high school finals. “I love you, Sandy.” I go out onto our porch to enjoy the beautiful evening.

Looking across the glow of houselights in the valley to the dark, wooded hills beyond, I am wrapped in thankfulness for so many blessings. For my kids and granddaughter, certainly. But also for the simple fact the love of my life is still beside me after thirty years together, despite cancer trying to claim her four years into our marriage and, when that didn’t work, a cerebral aneurysm after Sandra’s birth. I know it could all have turned out horribly different. Yet here we are, living the best years of our lives, active and engaged in our work, and more in love every day.

I remember thinking and feeling those things that night. That is all I remember.

July.  Helen Hayes Hospital, a state-of-the-art rehabilitation facility overlooking the Hudson River. I wake to sunlight flooding my room. My mind is foggy, I’m not sure of the date, but I know where I am. I just can’t remember why I’m here. I do know I want to get up and take a shower. I also know that means I have to wait for help.

My mind wanders, and I hear myself singing, ‘Take these broken wings and learn to fly again, learn to live so free.’ Mr. Mister in the morning. I think of my family, who will be coming in later, and marvel at their eagerness to be with me, though I can do so little for myself. I find a pen and paper on my over-the-bed table and try some writing. When my wife sees it later, she’s amazed that my handwriting hasn’t changed!

My dear Irene. In the days since I regained consciousness, she and my medical team have tried to help me understand what’s happened to me, why I’m here. I do my best to process what they tell me, but it will take weeks for it to sink in.

How that night back in June, my daughter Sandra woke her mom at 12:30 AM because I hadn’t come back into the house. How Irene got our neighbor, my good friend John, to help her search for me. How they’d found me standing, slumped, barely conscious, against a chain-link fence along the road by our house. How, as Irene put it, my face was “pulp” and my eyes purple and swollen shut. Irene, who (like me) has worked as a nurse for decades, said she’d never seen such head trauma.

How I was rushed to the nearest hospital, where scans revealed extensive complex facial bone and skull fractures, and extensive acute intracranial and subarachnoid hemorrhages.

How I was intubated, how lifesaving surgery relieved pressure on my brain; how I was choppered to Westchester Medical Center, a Level I Trauma Center, and placed in an induced coma. How doctors discovered an aneurysm deep in my brain – which helped explain my fall, face-first, onto a stone wall below our house. Irene insists angels helped me drag myself the 150 feet to where she and John found me, my jeans grass-stained and dew-soaked.

She’s right. It is a miracle I lived through that night, and then survived multiple surgeries. “I give him a 1% chance of making it,” my Neuroendovascular Surgeon, Dr. Fawaz Al-Mufti, told my wife.  “But,” he added, “If I have any say in this, I’m going to give him that chance. We’re going in full-court press.”

On June 13, Dr. Al-Mufti and his team performed a three-hour surgery and successfully coiled the aneurysm. They saved my life. Later, doctors worked to put my face back together.

Four weeks on, and I’m at Helen Hayes. And today is a big day. The feeding tube in my stomach comes out, if I promise to eat. I’m craving Dunkin’ Donuts coffee and soft ice-cream. I’ve lost forty pounds, and I need to put some meat back on my bones! I put down the pen and pick up the breakfast menu, but I can’t make out the words. Frustrated, I close one eye to see what’s wrong. The room goes dark. I cover each eye separately and discover my right eye is completely blind. Oh, God! How much more do I have to endure?

My nurse, Angie, comes in and wheels me to the shower. I let the hot water pour over me, feel it sooth my fears, for now at least. I’m ready to face another grueling day – four hours of rehab.

First Mallory comes in, smiling cheerfully, and takes me to Occupational Therapy. “See if you can do ten arm raises.” She hands me the hot-pink, one-pound weights. “No problem!” I say. I used to curl forty pounds one-handed at home. But these tiny, pink things are wearing me out! I feel so weak and stupid. I give it all I have and manage ten reps.

Next it’s Kim, for Speech Therapy. I answer questions to voicemails she plays for me. Pretty easy!

Finally, Physical Therapy. My friend Stan is at my door. “You slow dance?” he asks with a big grin as I painfully get out of bed. “Yeah, but not with you!” I chuckle. Stan helps me to my feet, but now he wants me to try the flight of stairs. “Up you go! You can rest when you get to the landing.” I make it, and down again. A huge accomplishment!

Back in my room, a doctor removes my G-tube. It hurts like hell, but I thank her. Boy, am I ready for some real food! I polish off three hospital meals, and a home-cooked dinner my wife provides.

It’s July, but I’m always so cold. Irene brings me a thick quilt from home. She and Sandra take me outdoors for the first time, into the warm sun. I run my fingers down the long dent on top of my head and feel the soft area on the side of my skull. “What happened?” I keep asking my wife. “What are all the bumps on my head?” Tears run down Sandra’s cheeks. “What’s wrong?” I ask. Irene starts crying, too, and tells me she still has nightmares about the shock of finding me. I put my arms around them, and we try to make sense of it all. All I can say is, “I love you. I’m so sorry you’ve had to experience all this pain.” I don’t know if I ever loved my family so much.

Before discharge, I go back to Westchester for an MRI. A middle-aged man in a white lab coat comes straight toward me, grinning broadly. “Do you remember me?” he asks. “No,” I reply, “but I’m sure you’re the notorious Dr. Al-Mufti!” Despite my memory loss, I’ve heard so much about this exceptional man and the WMC team to whom I owe so much, I feel I already know him. Dr. Al-Mufti is overjoyed when I walk into his office. “You are a miracle!” he tells me.

We decide to stop by Neuro ICU, bed 6, where I had spent a month. I am surrounded by doctors, nurses, and staff. Everyone wants a hug, and there are many tears as they thank us for coming back. “Seeing you is an answer to prayer,” they tell me. “It’s a miracle. This is what keeps us going!” As I look around and see the joy and warmth on each face, I know this is more than just a healthcare team. This is family. “Thank you, thank you,” is all I can say.

We arrive home to find our house filled with food, flowers, and greeting cards. Thanks to God and to so many amazing people who’ve helped me in countless ways throughout this crazy ordeal, we are home, together again two long months after my accident.

The next months are packed with follow-up medical appointments, and hours of exhausting exercise as I work to regain my strength.

Eye specialists confirm my fears: I am legally blind. My right eye is sightless, and I’ve lost half the vision in my left. Both optic nerves are irreparably damaged. Devastated, I start wearing glasses, to get the most out of the sight I still have. My hearing is bad, too. I need hearing aids, but I’m not ready for those yet.

Our church family is right alongside us as we pray for God’s help to carry on. I know I owe him thanks for the healing he’s given me, for sparing my life, despite the devastation I feel over what I’ve lost. As much as I want my health back, I know peace of heart is what I most need. As much as I want my sight back, I can only ask that I be given the vision God wants me to have. I’ve been given a second chance to live – and I need to use my life to help others.

No one said that surviving a TBI would be easy. Daily living is a huge challenge, and sometimes I get very frustrated. A small comment about how good I look can set me off. Often I direct this anger at my wife and family – and then immediately feel extreme sorrow knowing I’m hitting out at the people I most love, the ones who love me beyond all reason. 

I’m learning that thankfulness and acceptance are two key ingredients to resolving this frustration. I’m not the same man I was before. My blindness and brain injuries mean I’m not able to do all I used to. I have a different life to live now – but I have life!

I pushed off getting a white cane. It felt like admitting defeat. I’m proud to say I’m now working through Orientation and Mobility training, and I take my cane everywhere. It’s become a part of me. With time, I hope to get a Guide Dog. I feel like I’m moving forward, one day, one small step, at a time.

I started by telling you this is my story – which it is, of course. But it also belongs to so many other people, and when I doubt my ability to go on, I remember the hope and faith they had for me. Medical staff believed in me, and did everything in their power to help me to keep fighting. Friends, acquaintances, and strangers offered steadfast prayer and support. And every day for two months, my wife sat by my hospital bed, holding my hand. For weeks, she could only watch my chest rise and fall while a ventilator breathed for me. While she believed for both of us. I love her so much – and now it’s my turn to care for her, as we both heal.

I know it’s up to me now to do my part to continue the hard work of recovery. Part of that work is telling my story – our story. And if it encourages and gives hope to you, it will have been worth the telling.

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