Of Diseases and Disablitites and Silly Games

Several years ago, the "bra color" statuses on Facebook made national headlines. Ever since that time, it's been a nonstop whirlwind of copycat games whose intentions are meant to raise awareness for breast cancer or any number of other afflictions. It began a pathetic trend that has no end, it appears.

This morning I received private messages from a couple of friends asking me to join yet another game for breast cancer awareness. It seems I commented on a silly status they'd posted and got "caught" in the game.

The statuses, however, are cloaked in secrecy and have little to do with raising awareness as much as it just makes me want to stop commenting on other people's posts. No one knows there's an underlying message, or that it is meant to raise awareness, unless they comment on the post and get trapped caught in the game, too. The first line in these messages was "You shouldn't have commented." That's for sure, I thought. And I immediately clicked the "leave the conversation" button.

My honest opinion is that these diseases, ailments, disabilities, and afflictions shouldn't be relegated to impudent Facebook statuses. Real people suffer and are disfigured for life because of cancer, and many lose their lives. There are few of us who haven't been affected by cancer in some way. I have several friends who are both survivors or were casualties of this horrible disease. They are the human souls in this struggle, and their memories should not be consigned to some frivolous status that claims you've won $900 in the lottery.

If you want to raise awareness, stop posting statuses with such disrespectful levity and post your outright support on your status instead. Donate to organizations that research and treat the disease. Volunteer at the chemotherapy center. Drive patients to and from their treatment. Hold their hand. And lend a real hand of friendship. But stop the games.

I am posting this for those I've known who've lost their battle: Carla, Kelly, Amy, Allison, Edna, Janice, Cyndi, Addie, Cathy, Ron, and Barb. I am writing this post for those who are fighting their battles now: Barri, Helen, and Kay. I write for those who've conquered once, but live in dread that it will return: Suzette and Marta and Cindy and Nance. And I write for those who struggle with diseases and conditions known and unknown, visible and invisible, shared and private. Each one.

It's not a game.

I just gotta say it...

There are many groups on social media for innumerable medical ailments and afflictions. I admit -- I'm a member of some of them. Each group touts the members availability to offer "support" and advice to people with similar conditions. Sometimes these groups can be very good. They offer immediate feedback or relieve anxiety about concerns.

But lately, I've noticed an abundance of misinformation being shared. Things like whose doctor said what and whose did not, and you should do this or not do that. People come to the groups seeking advice for things they should be asking their doctor, and I can only assume that many of them are following the advice of people they don't know and who don't know them. It seems everyone has an opinion, and apparently, doctors' advice varies widely with every individual case.

It's a regular National Enquirer.

You'd think I'd know better, but I continue to visit these groups and read the posts and comments. And then I find I'm sitting on my hands resisting the urge to counter the foolish advice that is given by well-intentioned, but misinformed or ignorant members. It's hard. Some people take a little bit of information, combine it with their personal experience, and add a whole lot of stuff from God knows where. They get people upset and worried over half-truths. I've even seen comments advising people to go against their doctors' advice. Some people think that adding the catch phrase, "my doctor told me" somehow legitimizes their advice. I've read things I'd consider not just foolish, but dangerous, as well. I wonder how many people have been injured or worsened by heeding advice to "do this" instead of what their doctor said.

At times, I've questioned my medical team about some of the things I've read. It's usually met with a polite smile and information that corrects or refutes the misinformation, and then they tell me to stay away from "those" sites.

We are not doctors.

We don't know the individual medical histories of the people who are posting. Nor do we have years of medical school education or medical practice to support our beliefs on a medical topic. People have a tendency to grandiose the details of their conditions, as well. They weave tall tales of long-suffering. It seems like everyone is trying to "one-up" everyone else, and those "pearls of wisdom" that are shared were earned through personal suffering.

Sometimes, I just can't stand it, and I have to post a comment that reminds people not to seek or give medical advice on the social forum, but to contact their doctor or other members of their medical team.

It's usually met with disdain. People don't like to be called out.

Here is the truth: Having a cochlear implant or sudden sensorineural hearing loss or any other condition does not qualify me or anyone else to give medical advice to another person any more than having had surgery qualifies us to perform surgery.

We should be more cautious about what we post and things we advise. And we should listen to our doctors over social media.

Now there's some advice I will heed.

I'm Wired.

I confess.

I'm wired. I have a dependence on electricity.

When I got my cochlear implant, I had no idea how much electric this little device and all of its accessories could consume. From the hundreds of disposable batteries to the dozens of recharging cords, my world has become a messy tangle of wires, and cords, and recyclable batteries.

The problem is in finding a way to recharge all of the necessaries each night in a convenient, safe, and neat way. Each device has its own cord and connector. The cord for the Zephyr dryer doesn't fit the battery charger. And the connector for the phone clip doesn't adapt to the remote assistant. Throw in my cell phone, Nook, alarm clock with a bed shaker, iPod, bedside fan, lamp, and iPad, and I have an immense maze of cords and wires -- each vying for space on my nightstand and tripping me up in the dark of night.

Adding power strips, outlet adapters, and extension cords only seemed to compound the spider web of cords beside my bed. I experimented with plugging in my various devices all over the house instead -- the remote assistant on the window sill of the dining room; the dryer on the table in the TV room, the battery charger on my husband's night stand -- but making nightly rounds to plug everything in and then reversing the order each morning to gather my things again was becoming a problem. I sometimes left for work without important accessories. I had to find a better solution.

I searched the online world and local electronics stores for charging stations that could end my wired chaos and relieve my OCD, only to come up empty-handed.

I know I'm not alone in my suffering. My Cochlear Facebook group has frequent posts from members seeking the same solution to the "electrical dilemma."

So I got crafty this weekend. And came up with this. It's not perfect. But I feel a lot better now. 

1. A box to hold a power strip and cords.

2. A hole for the power strip cord.

 3. Two holes to thread the charger cords
through the back of the box.

4. An organizer to hold extra accessories.

5. My devices are on top of the box for easy access.

6. The finished project.