News from Clusterfook

A year ago, I introduced some of you to my blogfriend Lisa, from Clusterfook.  We’ve never met in person, but we’ve been writing together for months over at the Mothers With Cancer site.  She has always been upfront and honest, hardworking and persistent, and dedicated to preparing her children for life, both with good memories of this time and lessons that they will take with them forever.  Her time is near, now, and she has posted her last tweet, email, and full blog post.  A friend is updating her blog this week at least and will keep the site up as an archive of her.  Of her life.  But today, I want to send this message out into the ether, where maybe she can feel it reverberate, just a bit, since she is mostly overwhelmed by the pain and drugs at the last, waiting, for the last minute of her life.

Lisa, we love you.  Go in peace.

Edited to add: Lisa’s gone.

Access

Things had been going so well. I’m in remission, my kids are happy, and I was out of the house today, doing the work I love. Things went great, all day … until I walked into a building downtown and was verbally accosted.

I try not to let it affect me, but, let’s face it, I have a physical disability. It’s called lymphedema, and when my arm and core swell, I have to start treatment again. I go in for daily physical therapy and walk out wearing a giant wrap on my arm that takes 8 bandages, rolls of gauze, sheets of cotton, and several pieces of compressible foam to apply constant pressure on my arm, hand, and fingers, reducing the swelling, eventually, to a manageable size. I can’t grip a thing, including my mouse, which makes typing darn difficult. But the problem here wasn’t with my work. It wasn’t with my typing. It wasn’t even about feeling self conscious anymore.

It was about access. Pure and simple. Because when I walked in the building at 500 E Street S.W., the security guard stopped me, saying, “I told you before. You can’t use that door.”

“What?” First of all, this is the first I’m hearing this. Second of all, why not?

“You have to come in the middle doors,” he admonished me. “You can’t come in that door.”

“I don’t understand. That’s the handicap door,” I said, baffled.

“I can’t open the regular doors.” I said.

“I have a handicap.” I said.

He just stared ahead and continued taking me to task.

As I cleared the metal detector, I gathered my courage and spoke up, addresssing both security guards this time. “They’re handicap doors. I have a handicap.”

No response. I went upstairs and dropped off some files, and came back down. I was spitting mad. It threatened to ruin my trip home. But I thought about what my blogfriend Liz would say about this, and I decided to stand my ground.

I asked to see his supervisor.

I waited.

I waited.

I waited, having a difficult time standing in the stone foyer.

After 20 minutes, the security chief appeared. I told him what happened. I told him that I have a handicap. I have had cancer, and I don’t have much strength in my arms and back to pull heavy doors like that open anymore. I pointed to the sign on the door that said “For emergency and handicap use only.” I mentioned that I have a handicap.

Those doors are there for a reason. And you know what? People with disabilities shouldn’t have to go around proving it before they’re allowed to use reasonable accomodations.

Why did I have to tell this stranger that I have had cancer? Why did I have to admit out loud, “I have a handicap,’” in order to be able to enter the building and do my work? I don’t know. But I think it begins with ignorance.

Friends, if someone is using disability accomodations, and you’re not sure they should, please consider the fact that not all disabilities are visible, and that they are not constant over a person’s lifetime either.

Just two years ago, I was healthy.  Just like you.

Twitter dressed me today

Last year, I tweeted my surgery. Sometimes, I’d tweet my chemo or check in just before radiation. Lots of times I’d twitter just for some company while I recovered from a harsh treatment.

But Monday? A new low in twithistory. Staring at this big giant wrapped arm of mine and a big meeting at NASA the next day, I tweeted and blogged my dilemma, saying,

FASHION EMERGENCY. Seriously … help me get dressed, please? http://tinyurl.com/awdcn2

Now, normally, I just torture my husband with last minute wardrobe changes, but I was so out of my depth here with this big arm that I thought I’d ask around. You guys came through in a big way! Here is the result: Tailored pants, simple top, big necklace, and a brown sweater wrap over it all. [The sweater was perfect until I hot flashed all the way through the meeting. Then I looked like this.]

Oh yeah. That necklace totally distracts the eye from the arm wrap!

Three more

I don’t need ten today. Just three things to share with you, and to rejoice over. Oh, and a question.

1. CLEAN SCANS. My PET/CT and CT scans, top of my head to bottom of my thighs, came back CLEAN. No cancer. No cancer. NO CANCER anywhere!

2. The little boys are getting better, finally over this dreadful fever/vomiting/coughing thing that’s been going around.

3. I saw my new Lymphedema PT/OT today. She says that with daily therapy and wraps for the next 3 weeks, the swelling in my arm may return to normal! Hurrah!

Which brings us to the question. I have to get all dressed up fancy tomorrow for a NASA review. At the risk of sounding shallow, WHAT am I going to wear? The wrap (bandages, gauze, and foam) adds a good 5 inches to my arm and none of my winter clothes fit! Here’s a visual … ideas? What do grown-up women with full arm casts wear to the office?

Whymommy, wrapped