by Band Back Together | Oct 9, 2010 | Chiari Malformation, Chronic Illness, How To Help A Friend With Chronic Illness, Invisible Illness, Pain And Pain Disorders, Trauma |
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.
by Band Back Together | 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 |
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.
by Band Back Together | Oct 6, 2010 | Breast Cancer, Cancer and Neoplasia, Chronic Illness, Coping With Cancer, How To Help A Friend With Chronic Illness |
I met her in the Fall of 1999. I hadn’t set eyes on her until I showed up with my moving van in the Southie alleyway. The house where we would become roommates. A mutual friend put us in touch as I needed a place to stay and she needed a help on the rent.
We didn’t actually live well together. Sure, we were cordial and hung out a bit, but she wasn’t more than a roommate. I’m kind of that way with girls, to be honest. It takes me a long time to let someone “in.”
The next year I got engaged and my then fiance lived just 8 blocks away, so I moved out. This is when she and I became close friends. We exercised together, commuted to work together, met for happy hours, had sleepovers. She worked her way “in” and we’ve never looked back.
She is my son’s Godmother. She is my husband’s confidante in all things, “WTF is up with my wife?” She is my girl. She holds my secrets and my heart.
And she is sick.
Yesterday, my girl found out her biopsy results. She has cancer. The Big C. It’s in her breast and her lymph nodes. This is all she knows. She’s scheduled to see the oncologist tomorrow and on Saturday, Team A will get together with her for her self proclaimed “pity-party.” We’re going to figure out where to go from here.
I’m trying very very hard to not make this about me. But I’m scared. And I’m pissed. I’m fucking irate. I’ve cried a lot of tears and I’m sure more will be shed.
But on Saturday and every day that I’m with her, I will be her strength, no matter what it takes. Hell, if it comes to it, and she’s in throes of chemo and she loses her hair, I’ll shave my head with her. I’m in. I’m so in and will fight with her.
She’s my girl.
And she’s sick.
*********************
originally written on thursday, 9/23.
An update. Initially, A’s MRI and CT scans showed that she had no more cancer. She was due to have her lumpectomy tomorrow, her 37th birthday. Instead, she had another biopsy on Wednesday last week and found out the cancer is spreading. So instead of the lumpectomy, she’s going for the double mastectomy. Losing both ladies. In16 days. And chemo right after. Fucking sucks, to be honest. I’m pissed off all over again. Her one positive note – she said “at least I’ll never again have breast cancer.” How’s that for a positive spin. She’s goddamn amazing.
by Band Back Together | Sep 6, 2010 | Anger, Chronic Illness, How To Help A Friend With Chronic Illness, Infertility, Invisible Illness |
Before I start, this is not your typical “I can’t have a baby post.” I am not the face of infertility, at least not as far as I know. I’ve never lost a baby. I’ve never even tried to get pregnant.
However, I do have Spondylolisthesis & Spondylosis which, in shorthand, means my vertebra on L4, L5, and S1 have less space between them than they should and have slipped forward.
This causes the muscles in my mid and lower back to try and compensate for what my spine can’t do, which leaves me in near-constant pain. I currently take medications for the joint inflammation and the pain. If I were to get pregnant, I’d have to stop taking the pain pills in the last trimester, be on bedrest for at least that long, and have to choose between breastfeeding and pain pills.
I’ve trolled through every forum related to my condition and pregnancy. It seems most women have experienced horrific pain during pregnancy that, in some cases, never went away. Many say that though their children are worth it, getting pregnant was the worst mistake they’ve in regards to their back problem. Some doctors advise having surgery to fuse the slipped vertebra together, a surgery with a six month recovery time, before attempting a pregnancy.
Even if I could quit work and devote myself entirely to a pregnancy, I worry the pain will make it impossible for me to care for a child. As it is, it takes everything I have just to get up the subway steps coming home from work. If I have to stand for the whole forty minutes on the train, I’m crying by the time I get home.
When I consider how many times a day a baby needs to be picked up, how heavy a car seat is, and how much energy it takes to keep up with a toddler, I know it’s totally out of my physical capacity. Plus, both Spondylolisthesis and Spondylosis are hereditary and I’d never want to pass this kind of suffering on to my child.
I know there’s always adoption or surrogacy, but they’re just not for me.
Selfish as it may be, I want the experience of carrying and delivering our child. I’ve spent a lot of years telling myself I didn’t want kids, but now that I’m with an amazing man, the tick-tocks of the clock are getting louder and I think I may want them…and the idea that I probably don’t have the option is crushing. When I see pregnant women or little girls with My Love’s shiny black hair, I’m hit with a wall of sadness and longing. Something inside tells me that’ll never be me.
So The Band, what do I do?
How can I accept that pregnancy and raising a child aren’t things I’m physically capable of doing?
