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Things You Can’t Tell By Looking At Her

by | Oct 9, 2010 | Chiari Malformation, Chronic Illness, How To Help A Friend With Chronic Illness, Invisible Illness, Pain And Pain Disorders, Trauma | 3 comments

If you saw me walking down the street, you would never know that there was anything wrong with me.

If you saw me walking down the street, you wouldn’t see the 8 inch scar up the back of my neck and head. You wouldn’t know that through that 8 inch scar I had bones removed, I had parts of my brain touched and adjusted. That I had a piece of a cow heart sewn into the lining of my brain.

If you saw me walking down the street, you wouldn’t know that the area around that 8 inch scar is in constant pain. You wouldn’t know that behind the smile is someone who wants to cry all the time. Who wants to lie in bed and wallow in pity for the pain that they’re carrying. You wouldn’t realize that when I tip my head side to side that I’m desperately looking for any movement, and little change that will reduce the pain I have. That even though I haven’t said anything to you, I am suffering badly.

If you saw me walking down the street, you wouldn’t realize that my left hand doesn’t work well. You wouldn’t notice that when I carry a bag of groceries in my left hand that my pinky finger never even gets looped in the bag handle. Or that even though my ring finger might be looped, you could pull it out with the greatest of ease. It’s a dummy finger. It’s there for appearances, and that’s it.

If you saw me walking down the street, you wouldn’t know that I have very little strength in my arms or my legs because last year I had to spend more than 2 weeks laying completely flat on a couch because spinal fluid kept pouring out into my back. And that just 2 weeks of strict bedrest can result in a strength deficit that can take a year to regain under the best of conditions. You wouldn’t realize that if I was given a 15 pound dumbbell that I would only be able to do one bicep curl before having to quit. You wouldn’t realize that I am weaker than your 6 year old child.

If you saw me walking down the street, you wouldn’t know that my balance is very poor. You wouldn’t know that neon lights confuse my vision so much that I nearly fall over. You wouldn’t know that I can’t touch my finger to my nose when sober about half the time. You wouldn’t know that laying down at night makes me feel like my feet are going to flip over my head.

If you saw me walking down the street, you’d never know. My battles are quiet, my scars are hidden. But they are real. Just because you can’t see them doesn’t mean they don’t hurt, that I don’t struggle every single day. Just because I’m up and about doesn’t mean I’m not in pain, doesn’t mean that I’m faking my symptoms or exaggerating them. Just because I go on vacations and make it to my morning class most of the time doesn’t mean I am healthy or capable of doing everything you can.

If you saw me walking down the street you’d never know that I have permanent disabilities. That I have to fight to get the help I need because I look fine. You’d never know how much it adds to the hurt and frustration when people say that I look fine, or say that it can’t hurt that bad because I’m up doing x, y and z.

If you saw me walking down the street, you’d still have never walked a block in my shoes. You’d never have walked a block in my pain, in my dizziness, in my weakness, in my fears. You’d have just seen a girl who looks like you. A girl who wishes that her insides matched her outsides. A girl who would give the world to be what you think she is.

Chronic Pain Sucks

by | Oct 8, 2010 | Anger, Caregiver, Chiari Malformation, Chronic Illness, How To Help A Friend Whose Child Is Seriously Ill, How To Help A Friend With Chronic Illness, Marriage and Partnership, Marriage Problems, Migraines, Pain And Pain Disorders, Pediatric Caregiver | 3 comments

Yeah. . . I don’t really know what I’m doing, but I have things to say (ed note: if you have things to say, you belong here), so here I am.

First of all, I am not the one in pain, so if you are reading this and you are and you want to tell me to shut my big fat mouth, because I don’t know what the hell I am talking about, feel free. However, the two people most dear to me suffer from chronic pain, and there isn’t a damn thing I can do about it.

Sure, I can provide comfort and try to make life a little easier, be sensitive, kind and gentle, remind my loved ones to take their medication (even though my husband’s on so much dope, it’s turned him into someone I don’t even know and I hate that). But beyond that, I feel helpless.

My husband was diagnosed with RSD (Reflex Sympathetic Dystrophy)  in late 2004-2005 – 6 months after a “mundane” farm accident and three mother f-ing months too late for him to get the aggressive treatment he needed.  He had a spinal cord stimulator put in that was supposed to “mask” the pain. Ha. The pain affects his right foot. He says it feels like someone poured gasoline on it and lit a match. Chronic depression has ensued; he was suicidal for awhile.  AND THERE WAS NOTHING I COULD DO TO FIX IT!

Meanwhile, in 2008, our daughter began to have chronic headaches. Not just ordinary ones, but the kind with tons of pressure in the back of her had. She began to have dizziness, trouble with balance, nausea, vomiting, blurred vision. I thought it was PMS.  (She’s thirteen now).

Really, PMS, dufus?

Yeah, well, turns out she has something called a Chiari Malformation with syrinx, which required surgery. . .on our baby. . . near her brain (duh, that’s why they call it neurosurgery). AND THERE WAS NOTHING I COULD DO ABOUT IT! Risks, yes. Would her headaches go away? Probably not, but she might be able to continue to have the correct use of her extremities and bladder if successful – a plus for an adolescent.

Now, in 2010, my husband is still in pain every day. He can’t walk. Our daughter wakes up with a headache every single day. I hate to see them in pain.

But, they are still with me. Our daughter has a relatively normal active life. Thankfully, the syrinx has significantly diminished – which is awesome and huge. We have each other. I know that I have so many things.

We live on a farm, so I’ve learned about taking care of livestock and how to charge a car battery and do a little work on a four-wheeler.  I can cut wood to heat our home if necessary.  I can shoot a gun. A country girl CAN survive, after all.  I’ve learned I can be stronger physically and mentally than I’d ever thought.  I’ve learned how to talk to doctors and ask questions, even if the answer might rip my spleen out. My heart has been broken so many times that I wonder if I even one left.

Most days I am thankful for the blessings we have.

Some days, like today, I’m angry as hell.

Things You Would Never Know About Her

by | Oct 8, 2010 | Chiari Malformation | 0 comments

Affecting more than 1 in one thousand people, Chiari Malformation is a disorder of the brain.
This is her experience:

If you saw me walking down the street, you would never know that there was anything wrong with me.

If you saw me walking down the street, you wouldn’t see the 8 inch scar up the back of my neck and head. You wouldn’t know that through that 8 inch scar I had bones removed, I had parts of my brain touched and adjusted. That I had a piece of a cow heart sewn into the lining of my brain.

If you saw me walking down the street, you wouldn’t know that the area around that 8 inch scar is in constant pain. You wouldn’t know that behind the smile is someone who wants to cry all the time. Who wants to lie in bed and wallow in pity for the pain that they’re carrying. You wouldn’t realize that when I tip my head side to side that I’m desperately looking for any movement, and little change that will reduce the pain I have. That even though I haven’t said anything to you, I am suffering badly.

If you saw me walking down the street, you wouldn’t realize that my left hand doesn’t work well. You wouldn’t notice that when I carry a bag of groceries in my left hand that my pinky finger never even gets looped in the bag handle. Or that even though my ring finger might be looped, you could pull it out with the greatest of ease. It’s a dummy finger. It’s there for appearances, and that’s it.

If you saw me walking down the street, you wouldn’t know that I have very little strength in my arms or my legs because last year I had to spend more than 2 weeks laying completely flat on a couch because spinal fluid kept pouring out into my back. And that just 2 weeks of strict bed-rest can result in a strength deficit that can take a year to regain under the best of conditions. You wouldn’t realize that if I was given a 15 pound dumbbell that I would only be able to do one bicep curl before having to quit. You wouldn’t realize that I am weaker than your 6 year old child.

If you saw me walking down the street, you wouldn’t know that my balance is very poor. You wouldn’t know that neon lights confuse my vision so much that I nearly fall over. You wouldn’t know that I can’t touch my finger to my nose when sober about half the time. You wouldn’t know that laying down at night makes me feel like my feet are going to flip over my head.

If you saw me walking down the street, you’d never know. My battles are quiet, my scars are hidden. But they are real. Just because you can’t see them doesn’t mean they don’t hurt, that I don’t struggle every single day. Just because I’m up and about doesn’t mean I’m not in pain, doesn’t mean that I’m faking my symptoms or exaggerating them. Just because I go on vacations and make it to my morning class most of the time doesn’t mean I am healthy or capable of doing everything you can.

If you saw me walking down the street you’d never know that I have permanent disabilities. That I have to fight to get the help I need because I look fine. You’d never know how much it adds to the hurt and frustration when people say that I look fine, or say that it can’t hurt that bad because I’m up doing x, y and z.

If you saw me walking down the street, you’d still have never walked a block in my shoes. You’d never have walked a block in my pain, in my dizziness, in my weakness, in my fears. You’d have just seen a girl who looks like you. A girl who wishes that her insides matched her outsides.

A girl who would give the world to be what you think she is.

My Friend Is Dying of Cancer

by | Oct 7, 2010 | Coping With Losing A Friend, Friend Loss, Grief, Help For Grief And Grieving, Hospice, Ovarian Cancer | 3 comments

my friend is dying

of cancer

a friend. a cyber-friend.

we met 4 years ago on a grief site, called “beyond indigo.” there were about 5 or 6 of us who all came on at the same time, and we were a nice, tight little group. (these internet sites can be great…in the middle of the night, when you feel awful, someone may be on. even if no one is on, someone has written about feeling as awful as you…helpful. very.)

she is very spiritual. she follows the sufi path. she told us all in a post about an “ancestor ” shrine, so i made one for tom. and while it is mostly dismantled now it helped me. it was such a wonderful idea and i learned and grew from it.

anna’s loves name was ishaaq, and he led groups, and loved life, and was gorgeous. they played and sang together at their meetings (i am probably getting terminology wrong here, but it does not matter) he, and she, both seemed so wild and free to me. and that’s in a spiritual sense. there were problems. he had diabetes, and died from complications of it. she has major vision issues, which have left her disabled, and yet anna is a remarkable artist.

it just comes from within her. she is a shining spirit, to me, to many people. she dreams of ishaaq, and they are beautiful dreams. she never thought my “winks” were silly. i’m grateful to her.

here’s one of my favorite anna facts: many people in her religious tradition seem to take new names. she has a friend who posts on FB as Shaqeena Nonofyourbeeswax. (again, i may be a little off, but you get the picture). that is a cool friend. anna is cool.

she’s dying.

i guess, in reality, we all are, but she is, in reality. she has ovarian cancer. she had an operation and chemo, she was doing well, and now it’s back. and faced with a decision of more chemo and shitty quality of life, she chose hospice and pain management and, quite possibly, another lovely year…another walk around the sun.

(i now wish something that anna taught me to people for their birthdays….”a wonderful walk around the sun”)

you really can just be friends online these days. we’ve never met, but we have a connection. we do talk on the phone, and i’m always glad when she calls. it breaks my heart that she has to go through this. it makes me so happy that she has the friends that she does who do, and will continue to, support her. i think that her spiritual tradition is amazing about death, about crossing over and about soul-mates and eternal life. when she called me to tell me she said “i’m going to be the first to see my soulmate”…i knew what she was saying. in that instant i felt happiness for her.

i felt jealous of her.

i know anna is facing some rough times. i know she will get help from hospice and her friends, family and religious family. when she makes her transition she will be “handed off” into the arms of her beloved ishaaq. and her friends will be sad that she’s gone, that her gentle, creative and loving spirit has left this world.

i will be too. i’m her cyber-friend.

one day we’ll meet, on another plane. maybe she’ll be there wearing one of her incredible dancing outfits and she’ll sing me into another world with her sweet voice. maybe she and ishaaq will be there and they’ll bring tom to me, having befriended him on the other side.

i wish anna peace and strength and love.

i know she’ll have all of those things as she moves through her life.

I Just Need Someone To Be There

by | Oct 7, 2010 | Breast Cancer, Cancer and Neoplasia, Denial | 23 comments

What came first, the chicken or the egg?

Did I first find a band of brothers that could be there for me, through life’s ups and downs, and use them to help, should shit get rough? Or, somewhere in the back of my mind, did I know that through all the denial, something was about to come up that I was going need back up for?

I have found so much respite, joy, strength, laughter, camaraderie, hope, humble…wait, is humbleness a word? (I think, “been humbled by” is more appropriate but it didn’t fit grammatically.) And I feel like what I have to say right now will betray everything I have found. I will betray what has become my family, mi familia, and they don’t even know how important they are to me.

I’m all over the place, a grammatical idiot, probably fucking up my spelling to the highest (even though I am a middle school spelling bee winner!)

I want to be irreverent and funny and take it all in stride. I want to have the strength that these women who have had horrible illness, sick babies, miscarriages, lost of loved ones, painful break-ups have. I want them to still want me as part of their band. But I know what I am doing… or not doing…is so wrong..and I don’t want to lose them. I am making every excuse, cutting every corner, and not hitting it head on.

I am so sorry if I have pretended to be someone I am not.

(Christ on crutches, I sound like an insane crazy person.)

I have developed relationships here and on The Twitter that I am so vested in. I’m afraid to tell you. Will you still want me, after you have survived, you have fought, you have won, you have lost and I finally tell you my secret?

I have a lump. A sizable lump. My left breast has hurt for about a month. I have done nothing about it.

Because what if it is something? There is NO ONE here for me.

My Chelle Belle. She would be devastated. She reminds me constantly that she doesn’t know what she would do without me. When the ache first started, we joked, “what the hell would I do if all the sudden you came to me and thought you had The Dead ? You can’t have The Dead? What would I do without you?”

So I can’t tell her. And my Bean, my beautiful Baby Bean…what would she do without me? There is NO ONE for her besides me.

Her dad? The 40-year old Roller Derby sensation, who has been on the verge of eviction for the last 5 years? The one who only makes time for her if it’s one of his championship roller derby bouts? And she can find her own transportation to it? At 17?

Or maybe my mom, who is living on my couch right now. Acts like an addict even when she isn’t using. Until this morning, I thought had been in jail for the past three days for driving with no license, in a car with bad tags. Any minute now, she’s going to find the next great thing in American health care. Which means that every morning, I hand out bus fare to my mom and my kid. And at around 3PM, everyone calls me to ask what’s for dinner. Well, at least Chelle is only calling because she knows I’ve forgotten to defrost something. She’s home and will happily do that for me.

Because, when the kid is 17 and the mom is crazy and the partner is a musician, you only worry about that ache in your boobie the third time you toss and turn. Which only happens at about 2am, when the dishes are done and the dog is walked and the clothes are pressed and the homework is done and YOUR homework is done, and work clothes are clean and school clothes are clean and your kids who AREN’T your kids are tended to and you’ve gotten a little strength from your blogs….

And you still feel like you failed because there are dishes in the sink and you didn’t exercise, no matter how much you bitch about your weight, and that paper could’ve been better and, have you seen the ant brigade making a home right next to the fridge? and the lawn needs to be done and the job is trying to kill you and the floor needs to be vacuumed and the beautiful jungle you loved when you got the house REALLY needs to be pruned before it eats one of the poor babies walking to the bus stop on your corner and there are only 3 paychecks before Thanksgiving and it’s at your house this year and…

And…

There is a lump on my left breasticle. And my boobies hurt. And whatever that means, I just don’t have time for it.

But I’m gonna call my doc – the same doc who has NEVER met an ailment that a vegan yoga lifestyle wouldn’t fix, thank you Government HMO – I’m gonna call him tomorrow. And I’m gonna try to make time for an appointment to go see him before I’m due in Kansas City for 6 days. But I’m scared. And I’m sorry to all of the women who are probably cursing me out under the credo of early detection. Because I just know its bad. And I don’t know how to tell anyone. And I am surrounded by people who can’t care and listen because my job is to care and listen.

And I’m scared, terribly scared.

And I just need someone to be there.

And I am so sorry for asking.

Update: So after writing this last night I was a mess and clearly had to tell ChelleBell  what was going on. And then i frantically found Aunt Becky on the Twitter and asked her PLEASE DON’T POST THAT. And because she rocks my socks off, AND has probably picked up on the fact that I have roving bouts of the Bat Shit Insane, she agreed to put the squash on it. But now I know how important all of that was to get out, and I feel like a total punk after the stories you all have shared here and my apologies for not trusting you. And I’m feeling so much lighter today.

And just called my doctor.

And I totally am having cupcakes for lunch.

I Want To Sue Susan G. Komen

by | Oct 7, 2010 | Anger, Breast Cancer | 6 comments

I want to sue Susan G. Komen.

I want to sue Playtex gloves, Campbell’s Soup, Glad wrap, and every single corporation making money on the carnage of cancer. I want compensation for the last 7 Octobers shoved down my throat with pink ribbons and “awareness.”

How dare you. My physical rubble, my scars, my rib cage, my bones remember the day my breasts betrayed my body – I still had a baby at home to hold.

How dare you paint me pink. And to place your pink interpretation of my experience on mundane housewife products? Insult, meet injury. I hear some effed-up patriarchal focus group somewhere, dudes kicking back, women wearing men’s suits trying to live with the fact that they sold out. This is what they are saying to me with every pink ribbon: “See…I even own this; you are a woman and you mean nothing more than cleaning products—and if I can, I will whore you out to make money.”

I thought we’d come a long way, baby?

…baby?

Psyche, join hands with your old friend despair, as we walk through the aisles of life in October and are hammered by image after image of a pink ribbon and the plethora of pepto-bismol shaded products I am supposed to buy. Does a kitchen sponge really make a woman get a mammogram? Is the dog food manufacturer really giving money to breast cancer research? I want evidence. I deserve evidence. I want the lab report on the efficacy of the color pink to reduce incidence of breast cancer. I want evidence that demonstrates that just seeing a pink ribbon on a golf ball increases the chance a woman will do a self-examination.

My body was hijacked by a disease at 36 . Hacked up, hacked off. Nerves cut, nodes removed. Home in time to hold my baby and play with my toddler. Dead tissue, dead sexuality, dead eyes meet mine every time I look in the mirror. Each October, my “recovery” is held hostage by corporations who sell their products with pink ribbons on them. Another invasion. Another intrusion. More and more mocking and belittling by those in power. I have to fight to “survive” October.

Oh October, I am tired of surviving you, and the other traumas of invasion that make me qualified to use the word “Survivor”.

Susan G. Komen, Avon, Revlon–you take one good look at my daughter’s 7-year old face when she sees the wreckage of my body. See her naive disgust, confusion, and fear that it will be her fate as well. See her try to piece together why her mother has no breasts, no nipples, no evidence of being a woman. Look directly into her eyes when she asks if she will “get it,” and I dare you to hand her a pink ribbon.

I want to sue Susan G. Komen.