Sigh. I’ve had this disease a long time and am thankful that it is not life-threatening to me right now. But sadly I have had to give up some things.
THINGS I’VE LOST
Writing by hand. I miss journaling in the morning when I first get up, which I told someone once was keeping my own counsel.
And although I could continue to do it on a computer, I know myself. I would go back and edit as I go.
Which would defeat the whole purpose, described in Julia Cameron’s The Artist’s Way:
“When we write by hand, we connect to ourselves. We may get speed and distance when we type, but we get a truer connection–to ourselves and our deepest thoughts– when we actually put pen to page.”
Wearing regular underwear. I now must wear disposable, extra-absorbent underwear, something that I used to joke about with friends saying I’d have to insist on black ones since I mostly wore black panties.
The whole set up is way more bulky than would’ve been acceptable back when it wasn’t needed. But I am mostly sitting in a wheelchair now so you’re not gonna be noticing the lumpiness.
Walking. Traversing a sandy beach, doing cartwheels, jumping on a trampoline. Roller skating. Trying on clothes in the changing room. Climbing stairs and trees. Standing up to shower.
Driving. When I was leaving work on one of my last days in the office, I was heading for the on-ramp to the freeway home. Suddenly the light changed and the guy in the car in front of me slammed on his brakes. My brain recognized it but the nerve signal couldn’t make it to my foot.
At the last minute I was able to swerve but sideswiped the bumper of the car in front of me anyway. Luckily there were no injuries. We pulled over to exchange details, and after he left I realized I needed to stop driving.
Now I’m dealing not only with the loss of my ability to manage my reflexes, but to even bend my legs at will. My vision is also no longer reliable
Doing some creative things. Sewing something. Tearing pictures out of a magazine to paste together in a collage. Baking. Saying “In a sec” to something and having it only actually be a second.
CHANGING MY ATTITUDE
Then I remember that I don’t have chronic pain. And that I can still dress and toilet myself, swallow food, and talk and breathe on my own. So I make a new list.
THINGS I’M GRATEFUL FOR
Working. Telecommuting from home, and also that I am still able to be in my home. Online bill pay. Grocery delivery.
Incontinence supplies. I think all the time how lucky I am in all the unluckiness of this that I have disposables. And black adult diaper covers. 🙂
Participating. Elevators. Cut-outs in curbs and other ADA stuff. Wheelchair service at airports. The Internet as community.
Doing other creative things. Able to knit. Blogging. Learning new things.
If you can’t change your fate, change your attitude.
Just two years after diagnosis, my friend has died. Ovarian cancer. Kinda ironic because she was the least girly-girl I knew, so this seemed like a desperate attempt by her organs to gain her attention.
Just two years after diagnosis, my friend has died. Ovarian cancer. Kinda ironic because she was the least girly-girl I knew (when she got married she wore blue boxer shorts and her combat boots under her frilly white, traditional wedding dress), so this seemed like a desperate attempt by her organs to gain her attention. In this post I’ll call her D. (Of late, her favorite online handle was DeathByChemo so I guess she expected this on some level.)
Both of us never had kids, but she did tell me once that while she couldn’t see herself having children, she also couldn’t see herself getting old without adult children. At her memorial, her husband explained that she had discovered that she loved volunteering at the local animal shelter, and that the strays they had adopted had become their kids. That makes sense.
I met her in the early nineties when we found ourselves working in the same document delivery company, catering to professional researchers in the SF bay area and around the rest of the country. It was a pretty low-level job but with ties to local university libraries at Stanford and U.C. Berkeley, for example, and highly educated colleagues from the area. It led to some of the strongest, wittiest friendships I have in my life. It led to our “posse”.
By the time I met her I had already been given the MS diagnosis. While I was very open about it, I did not show any symptoms. And like I understood from my first neurologist, I was probably going to be “out of the woods” in another year or two. We considered it, then, for the most part, disregarded it.
Once we went car camping (kamping with a “k” because you go to someplace like KOA, get an assigned space, pitch your tent—if you’re using one, not naming names!—by your car and share a common restroom with other campers). We scoffed at this type of camping but also recognized that we were too lazy (was this the beginning of my fatigue?) to do anything more.
When my torso unexpectedly went numb (now known as the MS Hug), we decided to take advantage of the numbness and went to get my belly button pierced, giggling all the way. We started an imaginary rock band, envisioning that we wouldn’t actually play instruments, but could spread rumors of our existence ala SpinalTap and took to calling ourselves “The Übergrrls”. The name sticks to this day.
Eventually, most of us moved on from that job and almost all of us married. But we still kept up with each other, adding other girls (and a few boys) to our posse as we went.
When I began to show MS symptoms exacerbated by the heat, I moved to a cooler area, the California coast. Another moved with her husband (and cats) to Japan, then to Berlin. D. and her husband eventually moved down to the central valley section of California where she had grown up.
Staying Connected on Social Media
In late 2015, D. started having pain from blood clots that were developing in her legs. She went to her doctor and was diagnosed with ovarian cancer. The doctors congratulated themselves for “catching it early,” rushed her in for surgery and felt it went very well. The plan was that for a while after D. would go for chemo and radiation therapy, then it would be over. We’d all tell stories about it into our old age. We exhaled and pretty much went back to our usual routine.
We had already set up a group in Skype with everyone’s email I called “The Girls” and were able to see and kvetch with each other simultaneously and regularly.
Later, as that got harder for D., we discovered the free messaging app, WhatsApp, where we once again arranged a group where we could post whenever and then whoever else was around could simply chime in. Even in Berlin, with its nine-hour time difference, we all felt connected.
Would You Rather?
Then came more bad news: the cancer was in her liver, the lesions inoperable (tumors too deep). She decided she wanted to keep fighting; that meant more chemo. She developed painful neuropathy in her legs and arms.
Recently she was bemoaning the lack of dexterity she was now experiencing in her hands, presumably from the chemo. Still, she said, I’d prefer ovarian cancer to MS.
D.: The chemo that breast cancer patients get often causes lymphedema. That’s one side effect I don’t have to deal with with the drugs that I’m on
me: its wry-funny how we view other things as worse then what we have
me: i don’t have pain which a lot of MSers have
me: but they might still be able to walk
D.: I know. Lymphedema is awful. It’s like having a beach ball of fat hanging off of you that’s not even really fat and you totally didn’t deserve it. But it looks like fat.
me: so would i trade?
D.: I don’t give a f@#$ about being bald. But apparently there a class action lawsuits filed by breast cancer pussies because chemo made them bald. Breast cancer has a 90% survival rate. Ovarian cancer has a 90% death rate. And the breasties are whining about hair loss.
D.: Good question. Walk or pain? I often ask myself if I could get something back would it be my hands or my legs. I would love to feel runners high again. I would also like to be able to cut my toenails, pick my nose, and sign my name to a paycheck.
me: i take living bald to dying with hair hands down
D.: Yeah that’s not even a close one. And I take ovarian cancer over MS. You’re going to outlive me, but I had 49 years of perfectly normal walking and nose picking.
D.: Ovarian cancer is [unintelligible] Stupid Siri. But to be fair I’m probably still mumbling from the Dilaudid
me: thank god i still have nose picking
The friend zone | NMSS “It is absolutely essential to have a network of individuals who are important to you and to whom you’re important.”