Month: November 2022

I’m Acknowledged in This Book!

danielleshanti

For the past few years, I’ve made myself available as a sensitivity reader (or authenticity reader) for able-bodied authors who are creating a character with cerebral palsy. An authenticity reader is anyone who is living an experience that the author is not. That reader is able to share their real-life perspective so that the fictional representation is more authentic and avoids stereotypes. More about sensitivity reads on my website. 

FLY, by Alison Hughes, is the third professionally published novel for which I’ve served as a sensitivity reader, but it’s the first where the character with cerebral palsy is the story’s main character. Felix is a fourteen-year-old power wheelchair user. Every portrayal of CP that I’ve commented on has been different from my own CP, either milder or more profound. I don’t always feel comfortable speaking as an authority on CP when everyone’s experience is different. But that’s why it’s recommended to have multiple sensitivity readers when feasible.

Working on this manuscript was lovely because it’s a middle grade novel in verse, which makes it a more approachable project than a longer work, and it already had so many “cerebral palsy moments” where my only comment was “Yes!”

FLY was released by Kids Can Press on October 4, 2022, and the author sent me a signed copy. I recently read it, and I really, really love seeing the way a story changes from later-draft manuscript to published version. Yes, I feel proud when I see that a suggestion of mine made it into the book, but I also love seeing other changes, changes that I wouldn’t have thought of that make the story much better. So, yes, I wholeheartedly recommend FLY for anyone twelve-ish and up (the content does include some drug-dealing at school). And I’m not just recommending FLY because I had a small part in it. The story is just the right mix of funny and serious, with just the right amount of sarcasm and introspection.


If you’re looking for more stories about people with cerebral palsy, here’s the goodreads list I created for books that feature cerebral palsy in any way. I’m only allowed to “vote” for 100 books, and I’ve reached my limit, so please add more books if you know of any!

Getting a Mammogram with Cerebral Palsy

danielleshanti

I recently, finally had my first mammogram, and I think it’s important enough to write about. Annual health screenings are an excellent way to prevent cancer, and mammograms are recommended beginning at 40.

I put it off all of last year (40), and I’ve had several calls and proddings from my doctor’s office throughout this year as well (41). Now, 42 is only a few months away. It’s not that I was really nervous about it. I think I’ve just gone to so many appointments and had so much imaging lately that I didn’t want to do another one. That, and I’ve never done it before. 

I scheduled it in person (because, yes, I was already at the hospital). When they asked if I needed any special accommodation, I told them that my balance really isn’t good. 

“Can you stand for twenty minutes?”

Yikes, twenty minutes? “No. Can I do it sitting down?”

“I can make a note here.”

I figured that wheelchair users must get mammograms all the time. At least, I hoped they did, same as everyone else.

When the day came–I rescheduled it. I can have some pretty intense breast tenderness before my cycle starts, and the timing wasn’t cooperating with my appointment. I didn’t know how uncomfortable this was going to be, and I really didn’t want to have my already painful breasts squished. Good on you and your reproductive system if you’re able to schedule around this on your first try.

On the new appointment day, I was ready. I didn’t wear any deodorant or lotion as per appointment instructions, but no one asked about that. I was led back to a tiny changing room and told to undress from the waist up, and put on a gown with the opening in front. I hate those things; they’re way too big, heavy, awkward. 

Then I was led into the imaging room. I had my poles with me, and I asked if I was going to be able to do it seated. The woman (mammographer?) said, “We can try, but the images won’t be as good.” I said we could try it standing with my poles. 

She explained how she would take the images, that I’d be asked to hold my breath for a moment and then breathe out. That there’s one that’s a little more uncomfortable because it gets into the armpit, but if you stay relaxed it isn’t too bad. 

I said that there’s no way I could relax the muscles around my armpit while I’m trying to stand with my poles. She said I could hold on to the machine and sit in between takes. That’s what we ended up doing. The room was tiny, so there was about one step between the counter and the machine. She showed me where I could hold on with my left hand while she did the right boob. There’s a little recessed handhold on the side of the machine. Oh. No one told me it’s designed for holding on to. That changes everything. It was all completely fine. There’s lots of space around the bottom of the machine too that’s fine to grab. I was able to hold on with both hands, even putting weight on the upper body when I had to reposition my feet. (“Step a little closer and turn a bit this way.”) Then I used the right handhold to do the left boob. Yep, handholds on both sides. Brilliant. 

The other thing that I was really grateful for was that she stayed in the room the whole time, so the process was a lot quicker. None of this holding myself in an awkward position while the tech leaves the room–beeeep–and then walks back in, as with an x-ray. 

We did have to do some of the images a couple times for her to get good ones. I don’t think I was following her “Hold your breath. Now breathe” instructions exactly. When someone tells me to hold my breath, my instinct is to inhale first (gotta have enough air, obviously), but I don’t think she factored that in. She did indeed have the chair right there for me after each one, so I could sit while she checked the images and repositioned the machine.

Next year, I’ll say that I’m fine taking off my shirt if they don’t care either. Because sitting and standing repeatedly in that gown was ridiculous. And then the woman, whose job it is to look at and handle breasts all day, has to bare one shoulder, and get the gown out of the way of the machine, and carefully bare the other shoulder, protecting patients’ modesty. I almost just took the gown off right there. Next time.

The whole thing took like ten minutes, and that’s with all the do-overs. It’s so not a big deal. And it’s not painful; it’s just very firm squishing. At least, that’s what it felt like for me.

It’s nice to know that my little (tiny) pair are doing just fine. I do have dense breast tissue, so if you’ve been rationalizing that your boobs are small and nothing seems amiss, know that even with self-exams you may be missing something in its early stages, which is, of course, the best time to catch it. 

Here’s a good video from Johns Hopkins to help you feel prepared (no robe for me, but I did have a real door on my dressing room):

What to Expect During Your First Mammogram

Here’s an awesome video from Australia that shows a wheelchair user with CP getting a mammogram. No awkwardness around breasts in Australia! I can only hope that providers in the US are as lovely as the ones in this video:

Breast screening with a disability

If it’s time for your mammogram and you’ve been putting it off–now’s the time to make your appointment!

Wonder of Wonders

danielleshanti

After I posted my last blog, I couldn’t stop thinking about my realization that my tight muscles in my upper body aren’t trying to hurt me but help me. I went to bed at 10:00 pm that night and lay there talking to my muscles in my mind, just as I had done earlier in the day during my Soften and Flow meditation.

I told my muscles that it is okay to let go and I thanked them for helping me. I used language from the Soften and Flow meditation and from the brain retraining exercises to let the muscles know that I am safe now and that it’s okay to relax. Similar to my experience in meditation, I began to feel tingling in my jaw. I put focus on my jaw, my neck, my throat, my forearms. Each area began to feel different. My forearms tingled and ached deeply. Other parts of my body softened and tingled as well, not only the front of my hips as before, but also new places like my calves and my feet. Muscles were doing all sorts of things I’d never felt before. 

I was rather surprised but tried to keep up my calming mantra and reassurances and not get ahead of myself. My jaw / TMJ has been tight for years without ceasing. No amount of moist heat or muscle ointments or cannabis has had any effect. Now I could feel all those muscles letting go, up to my eye sockets, up the side of my face to my temple, around the back of my head and my scalp. My shoulders tingled, and my neck. On the right side of my face where my jaw connects to my skull, for years I have felt a bruise-like sensation anytime I accidentally touched it. I’m truly amazed to say that it is no longer there.

I felt shifts in my throat. At some point, I felt loosening in the space between my inner ear and my throat–something actually shifted inside my body. I felt that my hearing was suddenly sharper, then it went dull, and cleared again. I looked up at the ceiling in wonder, perfectly awake at 1:00 am.

When I woke up on October 21st, I found that my forearms and my trapezius had not let go completely. But the ease with which I could open my mouth without any tightness or startling pain in my ear was so lovely. My throat pain wasn’t gone, though it was greatly lessened. I didn’t really care, because I knew now that I could help my body relax, and that’s all that mattered.

I went for a slow, careful walk, as I try to do most mornings. My left calf was so noticeably softened. How delightful the change felt. How amazing to use my poles and feel my step go gently from heel to toe, heel to toe. (Lots and lots of people with spastic diplegia, including me, land toe first or flat-footed.) I felt like laughing. I was full of joy.

I am so unbelievably grateful for this experience. I’m amazed that I get to be one of the brain retrainers who can say that there was an immediate physical change as a result of meditation. A great shift. And I did it, without drugs or procedures, just me and my own brain. 

Has it lasted? Well, not exactly. In fact, I’ve managed, through a new physical activity, to tighten up my neck and shoulders until they’re all more painful than they’ve been in years. The difference is, I have hope now.


But exactly HOW did I manage to achieve this wonderful change? How the heck did I stay awake until 1am when I usually go right to sleep during a twenty minute meditation? What was it I said? How did I say it? Can I do it again? We shall see.