It's funny the things we keep.
Last year, when my mother died and her house sold, we had to clean it out. During our excavation (Mom was a bit of a hoarder) my son-in-law found her medical records. For no known reason, I wanted them. I couldn't bear to part with them. Several weeks passed before I screwed up the nerve to look through them. On paper, thin and delicate as old lace, her breast cancer odyssey unfolded. There it all was. From the lumps, first diagnosed as Fibrosis, to the radical mastectomy. She was 32. I read every word. I'm pretty sure I held my breath the whole time. Even now, I can't glance at the non-descript brown folder without a lump gathering at the back of my throat. Because reading through her medical journey, I couldn't help but see her as someone other than my mother - a real person. A 32 year-old female caucasian housewife to be exact. I thought of her, alone and frightened in a cold exam room. My dad wouldn't have been with her - he wasn't the type. In his defense, this was the early 60's and men stayed out of their wives doctor's offices in those days. I tried to imagine what she might've been feeling and thinking. My mother was not one to identify or talk about her feelings, but it didn't take a shrink to get inside her head. I know her first thought would've been of me. I was only four years old. She and my dad couldn't have children of their own, so after ten childless years, they adopted me. Cancer, often a death sentence back in the day, might keep her from being what she'd wanted more than anything - to be a mom. I knew she worried about my well being. Could I thrive in a world without a mother? Knowing my mom, any questions she might've had remained unasked, to avoid inconveniencing the doctor. Of course it wouldn't have mattered much, pre-surgery they didn't have many answers to give. They kept the best for last - she simply woke up without her breast. That's what they did in those days, lopped it off if they found cancer while the patient still lay unconscious. They didn't get options, or time to think. Like thousands of women before her, when she came to, it was without a breast, and that's how she found out she had cancer. I know she kept what must've been a terrifying heartbreak to herself. That was who she was. As I scrolled through her records, one small sentence struck me: Physical examination reveals a young, nervous, female. It was the nervous that got me. She'd have to have been dead to not feel nervous in that situation. But, of all the illnesses my mother survived, it was the nervous she never got over. Maybe this is when it began. Maybe it started out a kernel, in a child from an alcoholic home, where it burrowed and sprang to life in her early thirties, during her first bout with cancer. No one can know. All I know is her acute anxiety shrouded her life, and mine, until her death. It was the inability to calm herself, to quiet her own mind, that drove her to the many risky behaviors that eventually took everything from her - her money, health and dignity. A cruel,relentless force that she couldn't control. To me, it was the saddest diagnosis of all. It's been almost a year since she passed and I still try to reconcile who she really was with who she appeared to be. I grieve over our conflicted relationship and the wounds we could never heal. Mostly, I miss her. Had she lived, tomorrow would've been my mother's 80th birthday. So, wherever you are Mom, happy birthday. I know some lower level angel is lighting your cigarettes while you lay out your bingo cards. You know what they say, "Talent borrows. Genius steals." And no one said it better than Macy Gray. Every time I hear this song I think of my mom: On and on and on I've searched What I'm lookin' for is not here on earth I can't stand, I can't take no more So I know that I gotta go So long everybody, don't be sad for me Life was a heartache and now I am finally free Don't know where I'm headed, hope I see you someday soon So long everybody, I have gone beyond the moon All I ever wanted, love and the peace and the harmony Just to be, to live and shine, when I get ready I up and fly And I can't remember none of the things that I want to forget It's the best satisfaction no less, ask if I'm free and I'll say, "Oh yes" I know that now, my mom is finally at peace, and free.
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We bought our granddaughter, Adelia, a new bicycle for her birthday today.
I'd guess no one gasped after reading that sentence - hardly earth shattering news. Grandparents buy their grandkids stuff all the time. But, this bicycle came at what feels like an intolerable price, in a way that has nothing to do with money. We have a bunch of grandkids. After the first two girls arrived, we did the usual toy/clothes/crap buying that usually follows for birthdays, holidays, etc. As kids do, they'd lose interest in whatever we'd purchased in about two days. We decided we wanted to give something more meaningful. We opened savings accounts for them, and all those preceding. So, every year, instead of a pile of junk we put money away for each of them to hopefully entice them to go to college. No more gifts. As anyone who has a history with me, or this blog knows - our granddaughter Adelia has lived with an undiagnosed Cerebral Palsy like illness for several years. Specialist after specialist threw up their hands and tossed out CP after ruling out everything else. Ataxic Cerebral Palsy to be exact - which was not good news. They thought...maybe... The hope held firm in the maybe. As long as she went undiagnosed with a maybe trailing there was a chance, wasn't there? Maybe there'd be a medication. A therapy. A miracle. We hoped. Let me tell you what I've learned about hope...it is NOT the thing with feathers that perches in the soul. It's the thing with a boa constrictor's grip that strangles you like prey. We held tight in its grasp, willing and breathless. So, every year we put money in Adelia's account like we did for everybody else. After all, she might go to college. And, every year we'd watch her deteriorate, her struggle more obvious. But, she could probably still go to college. This week, after nearly four years, she got a final diagnosis from a round table of some of the best doctors in the world at one of the finest hospitals - they were half right before. She is Ataxic but does not have Cerebral Palsy. It's a different sort of Ataxia with most of the same terrible, debilitating, life shortening, symptoms and some different ones just for shits and giggles. I won't bore you with the details but the fact that this disease made itself known around the time she turned two means its course is more determined, relentless. Adelia won't go to college. Somewhere in my head, I knew this already. The temporary CP diagnosis should've gotten us all used to the idea, but I couldn't face it and we kept counting on her future. Her savings account proved she'd have one, didn't it? As long as we kept putting money in it her chances increased. Until they didn't. The maybe got lopped off. Now we talk about her quality of life, not its quantity. We're planning for now, not later. We're taking money out of Adelia's savings account to buy her things that she can enjoy now, that might make her living less encumbered. We're going about it like we need to. Her new bike is a special needs, adapted bike...a high-tech, raspberry pink, hella sweet ride. I feel like I'm walking under deep water with lead in my shoes. They call it crying uncle because you're crying while you do it. Adelia got a normal bike a couple years ago, before her mobility was as challenged as it is now. But still wasn't able to do it. "Dad...where's the tools?" she'd ask. "That bike doesn't work." That's Adelia - the bike's broken. She is not. "She's gonna love that new bike, Mom." My daughter, the unsinkable Kayla Mead, tells me. "She wouldn't ever know what it's like to ride one if it weren't for this," she assures. I mumbled something, but I don't remember what. We both go silent. "Don't be sad, Mom." Sad? Sad is an aspiration. I search for comforting words, thinking I've found some, I start to speak but the lump in my throat keeps it down. I stay quiet. "I'm so excited for her to get it. She'll be so happy," Kayla says. I still say nothing. She prods,"Mom?" As always, I'm battling tears and Kayla is propping me up. "Adelia is still with us. We'll have a lot of days ahead of us to be sad," she continues. "But today is not one of them." Laziness is my most marked characteristic so I don't do New Year's resolutions.
At least not for myself. This year, I decided to turn a new leaf (which is totally different than making a resolution) and make some...for other people. And I'm so lazy that even this is late. What could be more helpful than pointing out everyone else's faults? I consider this a public service. 1. Women of a certain age. Meaning, I'm certain you're still living so stop dressing like you're dead. Age appropriate and giving up are not the same things. Yes, I realize you can go too far (see my earlier post NYDJ). But, you won't die if you wear a high heel now and again. No, it's not easy. It can be painful. Who cares? Have some vanity for Christ's sake. I don't want to hear it. I wear them on crutches. I realize there's an argument to be made that perhaps I wouldn't be on crutches if I wasn't a life long stiletto wearer. I can live with that. At least I didn't go down without a fight. Birkenstocks, elastic waist pants, pantyhose (they don't look good on Kate Middleton, they don't on you either), sweat pants if you're not sleeping...yoga pants if you're not...you get it. Back away from the sale table at Sears and get yourself a Vogue subscription. Come on ladies! We've still got it and we've gotta show it. 2. The entire Medical profession. THINK before you speak. I'm an authority on this. Here's snippets of my recent conversations as proof. Nursey: Do you prefer Kathleen or Kathy? Me: Kathleen Nursey: Okay, great...Kathy...can you spell that? Dr. Doogie Howser: The last time you had a bowel movement was it in shapes? Me: You mean, like animals? Nursey: Do you have a DNR? Me: Ummm...I'm only 51. No. Nursey: So, Kathy, if you go into cardiac arrest and your heart stops you want to be revived? Me: I'm thinkin' YES. Nursey: On a scale from 0-10, 0 being the least, where would you like your pain level to be? Me: Is that a joke? Does anyone say, If you're all out of NO pain...I'll take excruciating? That would be ZERO. Nursey: Sssssss....well...okay...hmmm...how about 5-10? Doctor Doogie: Wow. Alot of these drugs don't work for you... Me: Well, it is the 21st century, there's got to be a lot of choices, right? Doogie: Any suggestions? 3. Annoying dog people. Keep your four legged friend to yourself. I'm allergic to dogs. But, I don't hate them. What I hate is those dog owners who assume you love their dogs as much as they do, so you won't mind at all if their furry beasts jump up on your cocktail dress, or wipe their snotty snouts on your pants. I adore my grandkids. But I wouldn't let them sniff your crotch, wipe their chocolate covered hands on your jacket, or lick your suede shoes. Please, show me the same courtesy. 4. Traffic controller drivers. Just drive. These are those folks who slam to a stop to "let you in" their lane or sit through their turn, two or three times, at four way stops to wave everyone else through. I'm sure they mean well. But, I often find myself in weird, Marcel Marceau type pantomime conversations with someone who can barely see me through their windshield. Using jerky hand motions and contorted facial expressions I struggle to let them know I don't want to turn into their lane. I want to go the other direction. By the time they get the message they've stopped a line of cars two blocks long. Honking, name calling and middle finger salutes commence and I'm still there, trying to turn left. Grrrr...if everyone just follows the rules of the road we'll all be fine. Really. 5. Hoity Toity Restaurants. Call a spade a spade. When did eating out get so complicated? Pan seared? Really. Isn't that just...fried? Charred bread? I can burn my own bread in my toaster at home. Waiter: Our popcorn has an aura of grapefruit essence, rosemary mist, star anise dust and black sea salt. Get out. Do we seriously need popcorn that takes a Walter White style laboratory to make? Or this jewel...Slow baked organic Scottish salmon with Yuzo-koshu crust, baby green vegetables, glazed gnocchi, and smoked bonito flaked orange broth. Huh? Of course it all arrives in a Leaning Tower of Pisa shaped cylinder on your plate which explodes as soon as you try to fork your way through it. It's about 3 ounces of food for $45. And, why are my scallops covered in two kinds of sauce, one a heinous shade of green, on top of a now inedible soaked and soggy bed of lettuce? Couldn't I have had them...pan seared...or at the very least...charred? Don't worry though, you can bring your own bottle of wine...they'll only charge you $25 to uncork it. And don't even try to bring your own opener. I've heard they're not amused. Happy New Year. Get it together. In previous blogs I've regaled you with my hip problems. In case you're new or just want to torture yourself and reread, here they are: It Can't be That Part I Or It Can't be That Part II Both of these highlight my delightful experience with bi-lateral hip surgery, the medical profession and the health insurance industry. To conclude, after a year of mishaps and misdiagnosis and a year long battle with my insurance, I had labral repairs on both hips. Labral tears are usually a professional athlete injury. Before you google me to perhaps find out about my storied past as an Olympic Curler, no need. Unless it involves a curling iron, you won't find me. I survived a head on collision. Which should get me a gold medal, but didn't. Four years later, the familiar tinge snaked through my groin and thigh. I immediately knew what it was. Been there, done that. So I did what any intelligent, health conscious person would do. I ignored it. Finally, when it got REALLY bad... I still ignored it. Then the pain interfered with my stiletto wearing and all bets were off. Having been pushed around by my general physician before, this time I went directly to the source. I skpped my primary doc and made an appointment with an orthopedic doc - a hip specialist, no less. Hip Specialist: This is my 15 year old assistant. She'll examine you and I'll be right back. 15 Year old Assistant: Does it hurt when you do this? Me: Ouch. Yes. 15 Year Old- What about this? Me: YES. 15 Year Old : And this? Me (catching on): I don't know. I'm not doing that. 15 year old, stern look on unlined, freckled, face: Um hum. Well, let me ask you- Me: I know what it is already. I've had it before. Torn labrums. Both sides. 15 Year old, eyeing my flabby thighs, gelatinous biceps: Hmmm. Did you have an accident? Me: Well, four years ago, when it happened the first time, I had a head on collision, they weren't sure- 15 year old: So...no accident. You'll need an x-ray. Me: Nothing will show up on an xray. I need an MRI. Xray Technician saunters in- Come with me. Xray guy chats amiably about nothing. Lines me up in front of the xray machine. Xray guy: Were you in an accident? Me: No. Hip Specialist looking at X-rays: Well, the xrays are clear. Me: I know. Torn labrums don't show up on xrays. I have to have an MRI. Hip Specialist: Umm humm...yeah...so have you ever heard of super cali fragilistic bursitis? Me: I've heard of bursitis. Hip Specialist: So we can give you a cortisone shot today or start you on physical therapy and if the therapy doesn't help we can still give you the shot. Me: Does the xray show that I have bursitis? Hip Specialist: No. Me: Then why would you treat me for that? Hip Specialist: Well, we tend to do the easiest stuff first and- Me: I'm not leaving without an MRI appointment. And you're not giving me a shot and I'm not doing physical therapy. I have torn labrums. Hip Specialist: Well...if you do have torn labrums you'll have to see the labrum specialist and not me. Don't threaten me with a good time. A month later, after my MRI, Hip Specialist calls on a Sunday: You have torn labrums on both sides. Me: You don't say. Another month later 18 year old labrum specialist says: Were you in an accident? Me: No. 18 year old specialist: Yep, both sides, torn. We can't repair them again. They've gotta be replaced. I'll have my assistant schedule it. Assistant: Okay, all scheduled. Here's the paperwork, all the pre-op and post-op stuff you'll need. By the way, did anybody tell you that you have an ovarian cyst? Me on hold with my family physician trying to make an appointment to get the cyst checked out. Got cut off three times. Gave up. Phone rings. 18 year old labrum specialist's assistant: Just wanted to let you know we'll need a deposit of half before your surgery. Me: Huh? Assistant: This surgery isn't covered by your insurance. So, off I go to surgery (again) tomorrow. With my 18 year old surgeon and no insurance. I'm sure it'll be fine. It went so well the first time, right? This is our baby Adelia.
She's 6 years old. She's hilarious. She's smart. She loves to say "butt cheeks" and "sucks to be you." She wants candy for Christmas and means it. She won't open any present that doesn't sound like it's candy. She shakes the box then hands it back with "Nah...that's okay." She yells at her baby brother. For nothing in particular. It usually involves "butt cheeks" or "sucks to be you." She wears her shoes on the wrong feet. I'll say, "Your shoes are on the wrong feet." She says, "It's okay. Don't worry about it." She likes to one up her dad with fart noises or bad jokes and say, "Sho you right." She has Cerebral Palsy. We don't know what that means in the long term. We only know that the long term will be shorter because of her disease. Her mom and dad have always worked hard to make sure Adelia lives her life like other kids. She does most things for herself. She's just not fast. She rides the school bus. She plays softball. She dances. She sings...badly, but loud. She fights with her older sister. She gets in trouble. I got to thinking the other day about what kind of life Adelia can have with a disease that gets progressively worse. Other than the obvious cure, what would I wish for her? I think I've proven in the short time I've been a blogger that sentiment is not my strong suit. So, I'm not one of those people who think that the disabled are inherently endowed with mystical, magical or pure qualities. I'm certain there are disabled assholes. I realize that's not a popular view. Not in a world where we are all in the stranglehold of political correctness. But, I stand by it. I say, good for them. There're plenty of non-disabled assholes, so please, feel free. And, I think only idiots say things like, "I don't want her to be defined by her disability." Have you ever seen a person who struggles with major disabilities? It defines them. They don't like it anymore than you do. So stop patronizing them. But, it all got me thinking... I want Adelia to fall in love, get her heart broken, make big mistakes, celebrate small victories, say the wrong thing at the wrong time, say the right thing at exactly the right time, hurt someone's feelings, kiss someone to make them better, cry like the world will end and laugh like it never will. I want Adelia to live a life in full, in all its glorious, messy, and complicated wonder. Years from now, I want her to visit me in the old folk's home with her shoes on the wrong feet, chocolate all over her face, making fart noises, telling bad jokes and saying, "Sho you right, Mimi." I just want her to live. My relationship with my mother is complicated. Get in line, right? My mother struggles with a non-treated mental illness and has for all of her adult life, I would guess. Maybe longer. She is a slave to her destructive, damaging impulses and addictions. They've stripped her of her health, her financial security, her relationships, her dignity. As her only child, my feelings for her jerk back and forth between love and hate, empathy and disdain. I want to slap her or hug her. I never want to see her again, I want her to move in with me. Sometimes I rail in anger at her, sometimes I beg in desperation - for sins committed, for the awareness and improvements I know will never come. I've often said to my husband, "Peace won't come for either of us until after her death." Last week, she had a heart attack. She survived. My mom has long enjoyed a mind-boggling relationship with suffering. She revels in it, she insists on it. Nothing, and no one, can keep her from it. She felt pain in her chest and arm, called 911 herself, got helicoptered out of the middle-of-nowhere, had surgery, and told no one. I heard it from her neighbor, who called the fire department when she finally noticed something was wrong over at my mom's house - it looked too still, closed up. Coincidentally, I'd just talked with her doctor the day before, a patient and caring man. The kind of doctor you want but never get. He'd been concerned, as we all were, that she could no longer live alone. It was a conversation she and I had many times, or I should say I had it. She tuned it all out. It's a conversation that went like most I've had with her since I was 13. A 40 year wrestling match. I always lost. "Please stop giving everything away." "Please don't insist on buying dinner." "Please don't insist on buying everything for everyone." "Please stop enabling your alcoholic husband." "Please respect the rules I've laid out for my children." "Please stop smoking. I'm allergic." "Please stop smoking. You've had cancer 3 times." "Please stop gambling all your money away." "Please respect my boundaries." All fell on deaf ears. "Please don't live alone in god forsaken nowhere when you're in such poor health," got the same negative reception as everything else. Or, no reception. She simply pretends I'm not talking. Her doctor suggested I write her a letter. She might take it better. So, I did. She still hasn't seen it since she is still hospitalized. But, I mailed it. I put a lot of effort into trying to lay it out to her gently. Without rancor or resentment. I used phrases like: "I care about you." "Your living situation scares me." "You have options." "We want this chapter of your life to be safe." Blah, blah, blah. Even though it was a letter all about her lifestyle and several options for better ways to live, it was really all about her death and dying. A round about way of asking, "Please, let us make your dying easier than your living." It's been painful to watch her lifelong, deliberate and relentless self destruction. She's frail yet tough. Meek yet stubborn. Until very recently, she moved at a frantic pace, a race to spend, gamble and smoke until the very last second of her life. She's done a bang up job of it too. She's got nothing left. I am angry at her. I resent what she's done to herself. I resent what her untreated illness has done to our family. I find her refusal to acknowledge it infuriating. Yet, last night I realized that when I wrote her that letter, spelled it out as carefully as I could, I left out what I really wanted to say, but couldn't. Please don't go. I'm not ready. Where were we?
Right. 12 year Doc said: It's your hips...torn labrums. I don't do that surgery. No one here does. You have to go to UCLA. Me: Surgery? What about physical th- Doc: Nope. They're torn. If you want to fix them, its surgery. It took two months to get an appointment at UCLA. Weird UCLA Doc's assistant tells me: She'll want to see your MRI. Me: Ummm...well...I don't have that in my purse or anything. Can she get it from my last doctor? Weird Assistant: We don't do that. You have to get them and bring them with you. Now, I don't know about you, but the last I heard this was the 21st century. The digital age. I can take a photo with my freaking phone and email it to my kids. Has this news not hit the medical profession? Me: Don't they just email them or something? Weird Assistant: No. You have to bring them. If it wasn't film you could FAX them. FAX? Should I just strap them to a pigeons leg and have them flown over? WTF? Two months later in UCLA Doc's office. My appointment was at 1:00. She saw me at 3:00 UCLA Doc: I looked at the MRI and you do have torn labrums on both sides. Me: I know. UCLA Doc: But, this isn't the right kind of MRI. Me: There's a wrong kind? UCLA Doc: Yep. I need the kind with contrast. This one doesn't have contrast. So, you'll need to get that done at your local doctors office and come back. Me: This is UCLA. You don't do that here? UCLA Doc: No...yeah...well...it's best if you just do it there and bring the films with you again when you come back. Me: It took me two months to get this appointment. It's a two hour drive, one way. Plus I waited two hours in the waiting room. UCLA Doc: I'll have my assistant give you priority. That was reassuring. I head for the door. UCLA Doc, pointing at my feet: You'll need to stop wearing those. Those would be my stilettos. Me: That's not gonna happen. UCLA Doc, smiling: No, I'm not kidding. You can't wear those. You have a serious hip injury. Me: I'm not kidding either. It's not gonna happen. Who's in charge now? I thought she should know who she was dealing with. Everybody knows the way you look is WAY more important than your health. Duh. I wasn't born yesterday. Another month later in UCLA Doc's office with the right kind of MRI, stilettos ON. My appointment was at 2:00. I saw the doctor at 4:00. UCLA Doc: You need surgery. Me: I know. I knew that before I got here. With the wrong kind of MRI. UCLA Doc, not really listening: I do one hip at a time, three months apart. My assistant will book it. Me to Weird Assistant: I need to book my surgery. Weird Assistant: She books 2-3 months out. Two and a half months later, surgery day arrives. It's been almost a year since my first doctors appointment. Hubby and I are driving to UCLA, my cell phone rings. Me: Hello? Voice on phone: This is blah, blah, from Blue Shield. Me: Yes? Blah, Blah from Blue Shield: I'm afraid your hip surgery isn't covered by your current insurance plan. |
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November 2017
IF YOU LIKE THE BLOGS YOU'LL LOVE THE NOVELS IN HER TWISTED CRIME SERIES |