Your blog about illness, pain, or disability means the world to me
By Liz Henry on September 14, 2009
BlogHer Original Post
Blogs about illness, medical troubles, or disability have been central to my life in the last few years and have helped me more than I can say. It's Invisible Illness Week for people with non-obvious disabilities or chronic illness. So, this week I'd like to highlight a few bloggers, including people in caretaking or support roles, who share their thoughts on chronic illness, cancer, or disability along with all the other things they write about! It's especially good to look around and think how medical difficulties don't make you suddenly a one-trick pony. These bloggers write about everything. Their lives and the beauty of their relationships shine out through their stories. Even when they're cranky!
Aimee's mom is battling cancer. And Aimee's battling it with her, caretaking, being her mom's support through all the visits and bills , pain, exhaustion, and difficulties.
From diagnosis through treatment and recovery, fighting cancer is harder than anything I’ve ever known. It’s not any one thing, it’s everything. Every blood test, rude staff member, doctor’s visit, and new medication just adds to the strain. It takes a toll on your body which forgets how to sleep or eat normally. It wears out your heart, which feels like it’s shattering into thousands of pieces, and just when you think you’ve collected all the shards to put it back together, it breaks again.
How hard it is to have people ask how you're doing - routine, friendly greeting - and not to be able to say, "Fine". In Aimee's case the answer might be more like, "Enduring." Her strength and her love for her mom really come through, as she explains exactly what it's so hard to tell people when they ask how it's going.
Wife of a Wounded Marine is written by another person whose life is affected by medical troubles you can't see when you look at her. I like how she sees her life, not denying the difficulty or her own fallibility but facing life head on and looking to the future.
After many hospitals, leg salvage, amputation, miscarriage, overdose, trips, celebrities, love, and borderline hate, we've made it and are finally entering into the next phase of our lives. I am not perfect and sometimes stress gets the best of me but I am human (and a young one at that) that is going through very serious things. I'm just doing the best that I can to juggle being my husbands backbone and still have time for myself. I write this blog to vent, to get away, and to share my story.
What a blog. Karie has a gift for telling it like it is. In her sidebar you can trace the story of her and her husband's last year, through the moment when she learns he was wounded, to photos of the daily care of his leg wounds, their battle to save his leg, dealing with the Veterans' Administration, and on through amputation and a long, long rehab. She sees and can't look away from the terrible trauma of having been a soldier in war. Physically, emotionally, and the way their buddies are also dealing with trauma.
The crazy part is more often then not terrible things like this act as a domino effect on these guys. The grief of their friend dieing in turn causes them to go have a drink or take that extra pill to get away from it. These guys are broken in a lot of ways and just don't know how to deal with this stuff anymore. They can't bear any more pain.
The ripples of our loved ones' battles spread through all our lives. Like Karie all we can do is hang in there and be supportive. Being there, witnessing pain and difficulty, and providing companionship is amazingly important.
I always enjoy MLO's book blogging and comics blogging! Lately she has also blogged a lot about ovarian cancer and what it's like to go through chemo. I thought her post on being on the wrong floor of the hospital was a good bit of patient advocacy; because she had to be in the wrong ward, she ended up with nurses who didn't understand proper pain management for people with cancer. In MLO's case, her husband stepped in and watched the clock for her and fought to get her pain meeds on time! Good work, MLO's "DH"!
Diana from BeTwinned eloquently describes the alienation that can come with illness and specifically with breast cancer. A year later, she looks back on her surgery, and still can't quite bring herself to tell her story. I like how she gives herself time to heal and cope. Her entire blog lured me in, with not just stories of cute twins, but her dramatic re-evaluation of her life's priorities, a move across country, and a very full experience of daily life, overlaying imaginary and fantastic over reality like a kaleidoscopic filter -- like this moment when she archeologyplayed and worked at archeology in her own yard:
When I started to mercilessly tear out the ivy, my gardening shears made a funny noise, not at all like gardening shears should sound against the earth. I suddenly felt like Dorothy when she’s going along the ground, looking for apples, and she suddenly comes across the feet of the Tin Man.
Turns out that my shears were tapping stone, not earth. I pulled back some of the ivy to reveal a huge flagstone underneath.
Asthmagirl has a fantastic life kayaking, cycling, and working in the tech industry. But she has an extra job, or hobby, just dealing with her cranky lungs. It's like being Ginger Rogers and having to do all the dance steps backwards in high heels. After many nights of almost no sleep she envies her baby grandson's peaceful naps. She talks about hot flashes (and a dramatic improvement in their frequency!) Most of all though in her blog I notice that like many other with a chronic illness or medical problem, little things can loom large. Stuff that happens that might seem minor to healthier folks can affect her life drastically. A cold can be the straw that breaks the camel's back. Making the decision to go on an airplane can mean risking months of trouble, pain, loss of sleep, loss of privacy, and huge medical bills.
I don't usually do this but I have to link to my own blog. A couple of years ago, as I faced a difficult diagnosis, I wrote about Pain, Disability, and Parenting. It might be helpful to some of you if you're in pain, facing illness, and trying to figure out how to still like yourself and find a good role to fill as your relationships with others change in response to crisis. The blogs about disability that I found through the Disability Blog Carnival and Blog Against Disablism Day really changed my life. I worried (and still worry) a lot about how I've become less nice, less useful, less interesting; alienation, ill temper, worry, exhaustion, all have taken their toll. I think that's a common thread through many of the blogs highlighted here. I read all these women asking themselves -- who am I becoming? And what does that mean to the people around me? Maybe some people don't worry about being less nice because they're just too awesome!
Nie Nie from the Nie Nie Dialogues whose blog regularly makes me burst into tears at work, not in the bad way of crying at work, but in a way that makes me grateful for everything in my life. How to explain it? Her appreciation of all the simple and complex pleasures in life, her quiet enthusiasm, and I think especially the way she is surrounded by love and friendship. With a few words and photos she looks back on the anniversary of her accident by hiking up a mountain with family and friends including quite a lot of blog readers and blogging community. And then with family -- a big extended family -- a party with cupcakes and kids to commemorate her and her husband's survival.
Tonight I overheard the news on TV at my parents house. The anchor was explaining a accident in Salt Lake. Then she ended with "...and now she is in critical condition in the hospital.....Did you hear about Dennis the special monkey who gets carried around on a leash?...bla bla blablaaa bla......"
And that was that.
And I thought, wow.
For that woman in critical condition she is still in critical condition with doctors and nurses trying to save her life...her LIFE! She has a family who is in critical condition too emotionally strained with the news. And we are in a moment saddened by her heart-breaking news but then it disappears . . .
Thank you for that beautiful and compassionate thought, NieNie!
Suzanne White on Momocrats tells how her insurance company cancelled her policy when she got breast cancer. Her insurance company used an error a student made on her chart when taking her medical history to deny her claims and cancel her insurance completely.
"What do you want me to say? "asked young Ralph.
"Just say that you made a mistake. Tell them that I did not have cancer before. That, as far as you know, I had never had cancer. Explain that you wrote down something that wasn't true by mistake."
"Oh I couldn't do that." Ralph told me. "It would ruin my medical career."
"Ralph," I said, as calmly as I could manage. "if you don't write that letter to Blue Cross, you will be ruining my life and my children's lives. I will lose my house and my career as an author will be over as well."
Suzanne lost her house and everything she owned, to pay for her mastectomy and chemo in the U.S. Her second mastectomy years later in France was free, and saved her life.
And to finish off my roundup, another appreciation post by Angela from Never a Dull Moment, who has rheumatoid arthritis and who is also the parent of a child with special needs. Angela starts off by letting us all know in detail how awesome her new laundry room is, which leads her to think of all the friends and relatives she appreciates in her life,
Weekends like this remind me of how blessed I am. Sometimes I tend to have myself a nice little pity party: look at everything I can't do, I'm so tired, my joint hurt, blah blah blah. But when I take off the blinders created by that pity, I realize I am surrounded by people who make up for my limitations and cause my life to feel full, even overflowing. And I'm not just talking about my mom and husband.
I love that! It's good to keep in mind that illness and disability are like a course in valuing interdependence -- not loss of independence. I'm not saying be Pollyanna every second. While it's impossible to be the perky, plucky sick girl all the time, thinking of friends isn't something to deny the bad or unjust parts of life -- the good things are a counterbalance to bring your mind and emotions back on course.
Thanks to all of you this week. Because of your blogging, and your telling your stories, you're helping other people feel less alone. Keep up the good work!
Do you write about illness or pain? Or you do choose not to share it? Are there blogs about medical issues that have been important to you?
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