Saturday, September 15, 2012

This Side Of Tomorrow

     Every now and then, I seem to have not just one of those days, but one of those weeks, the kind that leaves me bewildered, emotionally and physically exhausted, flirting with an old familiar despair that I normally ignore because it's too close for comfort. The whole week was kind of a shitstorm, really. It began at work Monday with an ethical dilemma, culminating in perhaps the most severe violation of personal dignity and autonomy I've ever witnessed: an elderly Alzheimer's patient being bullied into accepting a feeding tube by her own daughter. Because of issues surrounding informed consent, as well as the old woman's clearly stated objection to having the tube placed, I chose not to become involved in her case. The helplessness in that poor woman's eyes haunted me, though. She'd wondered aloud, "Why would I want a feeding tube? I'm in my late 80s!" to which her daughter replied, "Mom, you'll die without a feeding tube!" In a moment of extreme clarity, the old woman quietly said, "Well, people die when they're my age." Although I'm quite certain that neither she nor her daughter were aware of the data which demonstrate that feeding tubes don't improve outcomes, increase longevity, prevent aspiration, or enhance quality of life in patients with advanced dementia, this frail old woman had a gestalt about the situation. Yes, people die when they get to be her age, and many of those who are living without their faculties wish for an even earlier death. Why is our culture so opposed to death with dignity? I realize this sounds morbid, but the truth of the matter is, we start dying the moment we're born. The only guarantee we have in life is that one day, we're going to die. From that perspective, wasting away gradually and naturally when you're 89 because you're tired of living isn't necessarily a bad way to go.
     Twenty-two years ago, my three month old twin sons were handed a death sentence: cystic fibrosis. Although the pediatric pulmonologist who called to deliver the results of the boys' genetic testing hadn't intended for it to come across that way, their father and I knew exactly what it meant. Out of all the possibilities, it was the diagnosis we dreaded the most. Cystic fibrosis (CF), an inherited disease which progressively affects lung and digestive function, leads to a lifetime of crippling pulmonary infections and malnutrition, and until two decades ago, claimed the majority of its victims during adolescence or young adulthood. Today, the predicted median age of survival for CF patients is still only the late 30s. The year Nick and Rory were born, the gene mutation which causes the symptoms of CF was identified, and we were led to believe that a cure was just on the horizon. No one bothered to mention that this so-called horizon was actually a personal hell, especially designed for parents who'd unknowingly and unintentionally passed on bad genes to the children they created out of love. My sons will never see the cure--their lungs and pancreases have already sustained irreversible damage. The best we can hope for is more targeted therapy that will work at the cellular or molecular level, the pharmaceutics of which is currently undergoing agonizingly slow clinical trials. It's a process that can sometimes take years, and when you've got sick kids, each year is numbered. We've been fairly fortunate in that neither Nick nor Rory has had to spend much time inside the hospital. With the exception of just a few bumps in the road, such as Rory's three courses of home IV antibiotics over the past year, they've enjoyed reasonably good health. Now that they're adults, I don't have much involvement in their daily maintenance. They go to the CF clinic by themselves, deal with their doctors and therapists, manage their myriad medications, and perform their own breathing treatments. As someone who's spent a significant portion of parenthood silently grieving the very real possibility of outliving my children, I've eventually had to resign myself to that tired old maxim: "No news is good news." It's the only way I know to survive.
     As I drove home from work Monday, ruminating about the demented old lady and her pushy, condescending daughter, Rory called to let me know his CF clinic visit hadn't gone too well. "Mom, my lung functions are down again. I just haven't been able to kick this infection. Dr. Walker wants me to go back on IV antibiotics and have a bronchoscopy. I really don't want to have to go to the hospital, and I'm sure you'll agree that we can do the antibiotics at home." My heart sunk. "No, baby, this time, you're going to have to go into the hospital. This is the fourth time in a year that you've had to go on antibiotics. You're on a slippery slope right now...we've gotta get this infection figured out for good." Rory sounded defensive, "I've been trying so hard, Mom, doing everything right, all my treatments and everything!" My throat tightened, the bittersweet lump of lament quickening in my chest as I blinked to keep the hot tears from spilling out, but I could no longer contain the deluge. "I know, sweetie, I'm not blaming you, I'm just so frustrated and sad. I had a terrible day at work. And, I don't know what to do to help you...I feel so helpless and I hate that this is happening to you again." An uncomfortably long silence followed, interrupted by my choking sobs, the despair threatening to resurface once again: Is he going to make it to 40? Will his dreams come true? How could I live without him? "Mom, don't worry, I'm a fighter." Rory will be admitted to Emory University Hospital next week, and I'll be there with him Thursday morning for his bronchoscopy, an endoscopic procedure that's done under sedation to look inside the lungs.
     Last night, while Spartacus and I were eating dinner at our favorite outdoor pizza joint, a little tow-headed boy caught my eye. He couldn't have been more than five years old, and his tousled platinum blonde hair reminded me of how Nick and Rory looked when they were that age. With gleeful abandon and not a care in the world, he jumped up from the table where he and his parents were sitting, dancing barefoot in the middle of the walkway, gyrating wildly, almost purposefully, his sun-tanned limbs effortlessly twirling and spinning in perfect sync to an old Motown tune that was being played overhead. It was exactly what I needed to see, a welcome distraction. I thought about Rory, who's only known life with cystic fibrosis, and the poor elderly lady, who can no longer remember her life--he's fighting to live, she's fighting to die. They've both been dealt an unfair hand. It is what it is. For the old woman, her memory impairment is probably a blessing in disguise. To her, every moment brings a new day. Like the beautiful dancing boy, Rory lives on this side of tomorrow, the buoyancy of his spirit counteracting the physical imperfections he's done nothing to deserve, the ones that are slowly tiring him out. But for now, he's got good wind, and he's dancing like a fiend, like there is no tomorrow, and you know what? I'm dancing right along with him.
Nick, me, & Rory at one of their band's outdoor gigs, right before it got busted up by the police. And yes, that's a PBR in my hand.

12 comments:

  1. Dancing like there's no tomorrow. That's a phrase I'll take with me. Your posts always touch me. Beautiful. You're an excellent writer, you know? Written any fiction?

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  2. I'm so sorry to hear about your son's conditions because I had no idea how serious CF was and still is (my own ignorance). In one way I'm glad that you have the medical knowledge as I'm sure this has greatly helped over the years when it comes to the right type of medication, drugs etc.

    All we can do right now is to make sure we all live the kind of life that we want to. Do the things that we enjoy doing, and be the best human being we can. Tomorrow we commemorate the death of my nephew, who died 2 years ago. He was a well-known DJ in Tenerife, and across many countries. He had a heart-attack in his flat on the day of his birthday. So he was born and died on the exact same day. My nephew was living his dream, he loved every moment of his life, and that's how we all remember him.

    Helena, I don't know what to say now... You are a strong woman. Be encouraged and take care. You've got some beautiful lovely boys there.

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  3. Kris, death is the best well-hidden secret in our culture. Yet, it's a secret everybody knows. Except for the times when it strikes us personally, most of us can manage to put it out of mind. But in your case, it's a reality always in sight. One needs such courage and spirit and love to embrace life under those conditions, and you and your sons truly have it. When I was born, my parents were already pretty old, and I knew my time with them on this earth would be limited. So I resolved never to take them for granted, but to make every day a special one. In the end, that's all any of us can do.

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  4. Kris,
    I am sorry to hear about your boys CF condition. I felt my own heart sink when I was reading how your sons news effective you as I could relate to every word you wrote. Please know that my best wishes and thoughts are with you and your family and let Nick know I'll do my best to send over a rainbow of hope his way this next Thurs. at his pointed time.

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    1. Hey Angie...thanks for your comment. Blogger won't let me edit comments, but I will convey your well-wishes to Rory...we're used to confused identities, after all they're identical twins. My father never could figure out who was who, so he just referred to them collectively as "NickyRory." LOL :-)

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    2. Well then NickyRory it is :)

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  5. I've got tears in my eyes, Kris. I wish I had something profound to say that could ease the pain in your heart. Though the situation with my own son is profoundly different, I do worry about how long he'll be with me in this world. I'm constantly holding my breath, waiting for terrible news. I have to keep that fear at bay. I can't let it taint the beautiful world that is today.

    As for your elderly patient, who is that woman living for? It it her daughter or for herself? Clearly, it's a question not for her but her daughter. Having your mom die with dignity at a ripe old age? Things could be worse.

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  6. It is good that you can free your mind ever so often. The stress of everyday is greater for some, especially when dealing with family medical issues. I can relate, I used to wonder if my son would make it thru the next day with his sanity intact, so he surprises us all everyday. Best wishes on Thursday and I will be hoping for his quick recovery. You have strong sons, they have a strong mom.

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  7. Kris, I will definitely be praying for you and your family. I can't imagine how hard it is to have sick children and not be able to make it better. Keep us posted on how they are doing, OK?

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  8. thank you for insight to transition and life at its most naked

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  9. thank you for your insight to life and its truths

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  10. blessings to you and your kids... when my oldest daughter was born prematurely, as a result of me hemorrhaging at 23 weeks gestation, I thought that I might suffocate on powerlessness. Over the years and through the battles I've discovered something quite remarkable, a strength I never knew I had and a heart that had the capacity to love and hurt like no other. I love what you said, "Dancing like there is no tomorrow"... I think I will hold on to that...

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