A coworker of mine made an off-handed comment the other day that disturbed me immensely. She said "if I ever end up in a wheelchair, please just push me over a cliff." She laughed as she said it, and made a gigantic kicking motion with her leg. "Give me the boot. Life's not worth living if I can't walk." She is young, and athletic, and holds to the firm belief that LIFE is made up solely of the experiences you have while on the planet. Having "adventures" and "being present", squeezing every last bit of excitement out of this time that we're here is our "purpose". And that made me enormously sad. Surprising to no one, I guess... I couldn't keep my big mouth shut.
"Oh, do you really believe that? Do you really believe you're nothing more than a BODY? And that your only worth as a human being is what you DO with that body???" She looked at me like I was kind of insane. Of course. Everybody thinks that. She told me how she and her friends had long discusions about this very topic, and they all agreed. Off the cliff they go. They don't want to rely on anyone else or anything else. They don't want to be a "burden". And life was there to be LIVED, to have fun!
I think it's a very short jump from independence to pride. The thought that, if I
need someone else, then I am weak, and weakness makes me less worthy of life. To my coworker friend, I pleaded, very near tears "what would happen to this planet if everyone thought that way? What if there was noone who NEEDED anyone else? We would lose our ability, as humans, to care for each other, to provide service to each other. To show love to someone, even when we're not getting anything back in return! What does that do to our humanity???"
I work with disabled children. It's what I do, it's what I love. And I see these families. I see that they LOVE their children, despite the fact that they are sometimes unable to do ANYTHING for themselves. I see the joy, along with the stresss. Yes, it's hard. Raising any child is hard. But I also see that not one parent, not ONE in my nearly 20 years as a therapist, has ever openly regretted having thier child. I have NEVER met a parent who wasn't in love with their child. Honestly. I had one mom, who never planned on being a mom before her "surprise" pregnancy, lament "why did I have a child? Especially THIS child?" That was when the baby was little. Within a year, she was the most devoted, loving mother I knew. Despite her little guys' challenges. Very possibly BECAUSE of her little guys' challenges. She had spent 40 years of her life living for noone but herself, and suddenly, she realized a whole world of
giving, and it changed her profoundly. I'll never forget her transformation, it was so dramatic and complete.
I read a study once in one of my professional journals that claimed that 95% of children with Trisomy 18 are aborted on the recommendation of the medical profession. Doctors told families that having a child with a terminal illness would destroy them, that the stressors of having a child who would not walk or talk would be too traumatic. And so the vast number of these babies' lives are terminated. The study was interesting, though, in that it also interviewed the families who HADN'T terminated their pregnancies - families that may not have gotten any prenatal genetic testing, families who elected not to terminate their pregnancies. And fully 100% of those families stated that their families were HAPPY - not destroyed. That they loved their child, couldn't imagine life without them, despite their difficulties. And that their families had grown stronger as the result of a special needs child in their life, not been destroyed. So interesting. I shared the study with the mom of a little girl I work with who has Trisomy 18 and she concurred. "This is my daughter. I don't read anything on the internet about what's she's supposed to 'be like', and I don't listen when medical professionals paint me doomsday stories. I take one day at a time, and love her for her, today, and we are happy. She's the best thing to have happened to our family."
When I was on bedrest with my twins, I had a really difficult time. Lying around all day, yes that was tough. I tried to make the best of it though. For three months I read books, taught myself the guitar, kept a journal, wrote a play. Three MONTHS in bed. I could entertain myself just fine. Boredom wasn't necessariliy the hard part. The hard part was having to accept help. The church brought us meals, my mother in law cleaned my house, my sister in law folded my laundry. My husband had to bring me every last glass of water, every piece of food from the kitchen. Nothing was done on MY schedule, or the way I wanted it done. If Rob was outside and I was thirsty.... too bad. It SUCKED. It was doubly hard because I was fully CAPABLE of doing things for myself, I just wasn't
supposed to. Because if I moved, my babies would be born too early and could DIE. That's pretty strong motivation to stay put. I remember crying to my OB during one of many stints in the hospital to stop premature labor. "I can't take this anymore. I hate having to rely on other people all the time!" I'll never forget his response to me. I remember him sitting on the edge of my hospital bed, putting a hand over my hand and saying "Monica, you need to know that sometimes people NEED to help others, and you are allowing them that. Accept it graciously." That turned everything around on its head. It wasn't always about ME (go figure).
Edwarda O'Bara recently died. You may
not have heard of her - I hadn't until just now. Here's the CNN piece that brought her to my radar screen.
http://www.cnn.com/2012/12/23/us/longest-living-coma-patient-dies/?hpt=us_t2. She was in a coma for 42 years, and never woke up. FORTY TWO YEARS. Cared for at home by her family - not in a nursing facility. She was not on machines, there was no artificial life support. This lady was ALIVE - the care she received was food, water, shelter. I was moved beyond words at the dedication to life and love that this family had. I was moved at the impact this woman, who didn't move, didn't get out of bed - had on literally THOUSANDS of people the world over. The word that popped into my head was SANCTITY. And then I made the mistakes of reading the CNN commenters - which I should never do, because historically speaking, I have found that CNN commenters are the most vitriolic, hateful people on the planet. But it was eye opening. What I saw as a beautiful act of self-giving love, others saw as selfishness. Edwarda had no "quality of life" for 42 years and her selfish family DIDN'T MURDER HER. They didn't starve her to death, they didn't poison her, they didn't suffocate her with a pillow. How could they allow her to live and call it love??? And I realize, these people agree with my coworker - LIFE is not a valuable gift in and of itself. Life is only valuable if it EXPERIENCES.
In stark contrast to that, was Colleen O'Bara, Edwarda's sister, who has given up everything to care for her sister. Was she relieved that this "burden" was gone from her life? Quite the contrary. She states plainly that "My sister taught me so much about unconditional loveand patience, something I never would've learned without her".
Our society devalues life by reducing it down to a set of neuronal experiences. That paradigm leads unceasingly and inexorably to abortion, to euthanasia, to suicide, to DEATH. Life, even in it's weakest forms - maybe ESPECIALLY in it's weakest forms - leads us on a path to LOVE. And it is this LOVE that is the core of our humanity. It is what makes us in the image and likeness of God Himself.
