Chapter Twenty Nine
Helen’s disease didn’t progress in a linear fashion, and as the nights began to grow longer she stopped responding to the medicines and her conditioned deteriorated quickly. The first noticeable changes were the loss of her peripheral vision and a struggle to remember words. For the name she’d have spoken weeks before she began to substitute, “those things,” “you know what I mean,” and “that guy”. She smiled to cover her lapses, scared as the darkness closed in, and her mind began to falter.
With her mind and eyesight failing, she started to lose control over the muscles on the left side of her body. More often than not, she was unaware the coffee she held in her hand had spilled to the floor, naïve as her arm straightened under gravity’s pull. In a state of rapid decline, and adding to the severity of the situation, weight began to fall off her already thin body. Her bones now jutted from her skin. With the muscle and fat no longer providing any cushion, she bruised at the slightest touch and began, for the first time, to look gravely ill. A grimace of pain began now showed on her face, a sharp contrast to her sunny disposition. As Helen’s decline hastened she began to quit the living, sleeping more, and often falling asleep in the middle of dinner or mid-conversation. She slowly came to terms with the finality of the situation.
As the drugs failed, Rico quit performing and invested his time in researching treatment options. He spent hundreds of hours on the internet. He had Helen’s tests, scans, and biopsies, sent to the leading medical institutions around the country for second and third opinions. In the end, he learned they weren’t coining new science to save Helen. It didn’t work that way. You had whatever drugs or treatments the FDA approved, and a handful of clinical trials for which you might, or might not, qualify. Consensus from the health care professionals Rico reached out to was unanimous, “They were out of options and time to let nature to take its course.” In Rico’s mind’s eye he could see the doctors on the phone with him, scratching the ground with their feet, like Chicken Little, as they shared the bad news and hurried to end the call.
Rico wouldn’t give up, and still took Helen for motorcycle rides on the weekends. The two tethered by a large canvas belt Rico adapted for this express purpose. Helen never tired of the big loop, and it was a sad milestone when Rico realized she could no longer keep her feet on the passenger pegs as he drove; the motorcycle was now too dangerous for them to ride. After the motorcycle they took to walking, with Helen leaning on him heavily to keep from falling. Her left leg flopping forward without control, her body in a state of arrested free fall, as Rico held her to keep her from crashing to the ground. Onlookers often commented on the, “Drunk, crazy lady.”
Helen’s parents, family, and friends, came to visit as often as they could afford. Before the disease’s rapid progression, Helen, and her company, would sit up late waiting for Rico to race home after playing a set at Kill Your Television. The house crowded and filled with laughter and tears as they reminisced. In the morning late breakfasts, slowly lingered over, as new pots of coffee were made and Rico feigned illness or car trouble to cut work and spend time with Helen and her guests. As each visit came to a close, a desperate sadness descended, only to be followed by awkward goodbyes. Her friends and family struggled with what to say, as the likelihood of seeing Helen alive again diminished with each passing day.
Rico constantly nagged her to drink the nutrition supplements and milk shakes he brought her each day, in a vain attempt to put weight back on her frail frame and give her the strength to keep up the fight. His hope that he might indefinitely postpone the inevitable shattered when he came home after a show and found Helen lying face down outside her front door. His heart raced as he dropped the groceries and guitar he carried and ran to her side. Rolling her over, he found her conscious but bleeding and confused. A jagged gash ran down the left side of her forehead and blood covered her face. Shaking with fear Rico carried her back into the house and sat her gently on the couch. She weighed almost nothing.
He struggled with the decision of whether to call 911, knowing once admitted she’d likely die in the hospital. To comfort her, as he sorted out what he should do, he soaked a washcloth in hot water and washed the blood from her face. As he nested Helen’s head in his hand, and gently cleaned her wound, she revived and the confusion temporarily left her. Helen explained that she’d gone onto the porch to pick up a package, and while bending down, and unable to see out her left eye, she slammed her head into the corner of the brick pillar. Rico nodded in understanding. In an effort to comfort her, Rico downplayed the obvious tell of the disease’s progression and told her he’d done the same thing a hundred times before. Helen smiled, grasping at the straws of hope Rico threw.
With the groceries and guitar still in the front yard, Rico sat by her side and nursed her late into the night. As she began to doze off, he untied her shoes and pulled them off. On her left heel he noticed a crack, two inches and almost to the bone. A side effect of the steroids they’d prescribed to keep the swelling down. Rico started to cry when he realized Helen’s strength. She’d never complained about her foot.
The next day Rico took her to see the favorite of her many doctors, the doctor who’d previously given them so much hope with the test results that showed the disease at a standstill. Walking into the exam room, with Rico supporting nearly all her weight, Rico noticed the doctor’s concern at Helen’s rapid deterioration. The doctor took his flashlight and looked into her eyes. As he examined her motor reflexes and balance he gave her three words – pizza, blue and fifteen - and told her in a minute he’d ask her to repeat them. A couple minutes later he asked her to repeat the words. Helen looked at the ground, embarrassed she couldn’t remember what he was talking about. As the doctor explained there was nothing left for science to offer, Helen fell asleep. The doctor spoke to Rico in a low voice, “She is actively dying. She does not have much time left. She should stop taking the drugs, at which point she’ll rebound a little, but her journey will end soon. It’s time to call Hospice. I’m so sorry.” Rico called Helen’s parents later that day, while she slept on the couch, and shared the doctor’s prognosis.
Three weeks later, and after a late show, Rico walked in the home to find Helen sitting at the table with a small cup of tea in front of her. Surprisingly coherent, she smiled warmly when Rico walked into the kitchen. For a moment, she looked like the Helen of old. As the doctor predicted her mental faculties had temporarily come back and it was clear she’d been rehearsing what she wanted to say. In front of her sat a small notebook with crib notes, the words misspelled and disjointed. Looking at her notes and worried the window of lucidity would close, Helen started awkwardly, “With different circumstances it might have been a very happy ending for us, but I’m losing the plot and I’m almost out of time. I’ve marked a date on the calendar. I’ll bet you a dollar I can make it that long.” She tried to shake Rico’s hand, and be funny, but her hand flopped uselessly to the side. It made them both sad that she could no longer make such a simple ask of her body.
Rico didn’t want to bet against her and tears rolled down his face as he heard her out. “I want to spend as much time with you as I can. I don’t want to die in a hospital; I want to die in my own home. I’m not going to be a miracle survivor. I’ll be gone soon.” She paused, absorbing the enormity of what she’d just said. “Oh my God, I’m going to be plant food!” She was laughing and crying at the same time, “You’re welcome to stay here until my parent’s sell the house. They know how kind you’ve been and I’ve told them my wish you be allowed to stay.” As Rico fought back the tears, Helen made her last ask of him, “Maybe you’ll write a song about us someday. If you do, promise me that you’ll play it at my funeral. Promise me, please?”
“I promise.”
“I love you.”
“I love you, too.”
Done speaking she held her hand out for Rico to help h
er rise from the chair. Tears streamed down both of their faces and they hugged tightly, sobbing. A half hour later Rico helped her to bed. Her mind fogged as she lay down and she withdrew within herself and dozed off. Rico spent the night holding her and crying intermittently.