Category disability

Review: With Love From Karen by Marie Killilea

Angel Ackerman Leave a comment

Marie Killilea, mother of Karen Killilea and champion for research and improvement in medical treatment for those with cerebral palsy, wrote two memoirs and a children’s book about her daughter. She also wrote another book— though I don’t know the content of that one.

I’m puzzled by the title of this second memoir, as it refers to Karen’s correspondence with some American service men during the Korean War.

But the book focuses not on Karen, nor that correspondence, but family. The text itself is more beautiful and structured like a novel. Members of the family are cast with richness, though I think sometimes “Big Marie” (the author as her first born daughter is also Marie) gives the various pets in the household more literary attention than Karen.

Marie says she wrote the book in response to the huge volume of mail she received asking what happened next.

The second memoir focuses on all the children growing up, struggling with their futures and leaving home. Well, except for Karen, who, at least until she started showing Newfoundlands in dog shows, just exists in the background doing her physical therapy and for more than a year carries some unknown demon that she is wrestling and the family just lets her sulk. For a year.

The older children get married. A seven year quest for an annulment is chronicled. And elder Marie Killilea’s long-awaited miracle baby is conceived when she is 43. And then she is confined to bed.

Karen’s triumph is learning to put her own shoes and stockings on.

And in the end of the book — Karen reveals the source of her depression and her decision on how to approach her “freedom.”

I’m so disappointed not to know what happened to Karen. Remember Karen? I thought this was a book about Karen, not her damn dogs, the 80-year-old obstetrician, or what a holy Catholic family and their brood looks like.

Disability Pride Month

Angel Ackerman Leave a comment

This is part of a continuing serious about my journey even though I am more than midway through my 40s to understand my disability—cerebral palsy— after a lifetime of pretending it doesn’t exist

Since the teenager subscribed to the family plan of Spotify, my horizons have expanded.

I’ve found so many more podcasts, playlists and music than my 40-something brain can handle. But this allows me to learn new things.

For instance, that July is Disability Pride Month, but not Disability Awareness Month. And there is a Cerebral Palsy Day in October.

Disability Pride month started in 1990 to celebrate the updates to legislation mandating accessibility for those with special needs. And it even has a flag— black with rainbow zig zigs like a child’s depiction of lightning bolts.

How can you be proud of a disability? That sounds like it is anthropomorphizing the disability. Like it has a life. It does something.

I’m not proud of my disability. And I’m not proud to have it. It’s embarrassing and frustrating and, as I mentioned in my review of Netflix’s Special (read it here), when you have a mild disability people can’t see the depth of your struggles.

But I am proud that I get my ass out of bed every morning and do what has to be done.

And for the record, today is a hard day.

And one action I took, although small, I feel is mighty. I added a disability category on this blog and I organized it under the parent category “fitness.”

I started opening old posts and adding the tag, but I had to go get my second Covid shot (Pfizer) and then my neighbor accidentally cut the cable wires so now we have no internet.

And on our phones, the teenager and I share three gigs of cellular data. #singlemom

Anyway, no amount of stretching made my body relax. My back and lower limbs throbbed most of the day. And then after the Covid shot, my arm slowly got heavier and more sore. Now I hate to lift it.

The person who gave me the shot told me to use the arm and drink lots of water. I worked in women’s returns processing at the Stitch Fix Bizzy Hizzy where I opened and hung clothes from more than 100 priority mail envelopes. More than 500 items.

The warehouse was probably 90+ degrees but thankfully not too humid.

When I have these days, I tend to bend by doing lunges (to stretch my body and redistribute my weight), do calf raises in place, stand on one foot, and try to stretch my hips and back as much as possible.

But still the pain level seemed to keep increasing.

So in the car I turned on the heated seat and blasted the air conditioning while drinking some cucumber flavored water.

And took two Tylenol PM to ease the pain enough to sleep.

Funny part is— yeah as if it is funny— I don’t think it’s my cerebral palsy causing the pain. My period is due in four days. I think it’s menstrual cramps.

Everything wrong with my body seems to start in my lower back and hips. Hell, my daughter came into this world through back labor. Is that focus on my back part of the CP?

I used to take a lot of ibuprofen, then Aleve, then meloxicam. After a while, I realized. None of it helped.

I was listening to Dax Shepherd’s Armchair Expert last night and they did a special episode on medical misinformation. They had some pretty rough feelings toward chiropractors. They pointed out that chiropractors can be good or bad, but that the field itself isn’t very regulated or science-based. They turned the conversation to physical therapists. They liked physical therapists.

What about chiropractors who have a physical therapy background? My chiropractor can find muscle tension and stretch out things I didn’t even know I had. And my body seized up from being crooked and she straightens it out.

I guess I have a good one.

Review: A For Abled Podcast

Angel Ackerman Leave a comment

Another piece in my understanding cerebral palsy series

Technology can offer an opportunity for a great equalizer or perpetuate a divide. In both cases, there is a complexity that arises.

That sounds vague.

But allow me to try and explain.

My friend Nancy, a talented poet and essayist, is blind. She has seen the rise of all sorts of technology from computers, to tablets, to the gambit of “smart” devices. She has experienced that when looking for accessibility, those helping her (whether it be staff at organizations for the blind or everyday customer service employees) view people without what they deem standard technology— smart phones, online banking, PayPal, computers— as lazy, poor or stupid.

I’m thinking about this, in part, because of the podcast A is For Abled. I listened to the debut 2019 episode (recorded on October 6 which the podcaster announced is world cerebral palsy day) at the Stitch Fix Bizzy Hizzy last night.

I am realizing more and more that platforms that YouTube, Spotify, Facebook, etc., provide more and more opportunities to connect with real people so many of the “products” people put out there are amateur. And I am not knocking on that.

But when people talk about there experiences you need to keep in mind that memories are not the best source of fact.

The first episode of A is for Abled discusses the host’s background— Kyle, his sister Cheyenne and his mother have a pretty comprehensive discussion about their family attitude toward Kyle’s cerebral palsy, his upbringing, public vs. private school in regards to disability resources and quality of education, sibling relationships, the various therapy and surgeries Kyle has had and society’s reactions to disabled children and more specifically Kyle’s gait, which they call “swagger.”

Kyle was 32 in 2019, so this makes him more than a decade younger than me. His mother was 19 when she had him and he is the oldest child. They are also African American so they make some comparison/contrast between society’s reaction to the disabled and the reaction to African Americans.

Apparently the show has completed two seasons. And it sounds like Kyle’s condition is very similar to mine.

Between his family, his therapy, his various exercise classes that his mom encouraged him to try (yoga, aqua aerobics, tai chi), private school and surgery, Kyle had a lot of interventions I didn’t have.

Things A for Abled pointed out (I have not fact checked these statements):

  • Like Karen Killilea (if you don’t know who I am referring to I talk about the Karen books here), Kyle had surgery (twice) for his hips to straighten them.
  • People with cerebral palsy often develop arthritis in their thirties.
  • People with cerebral palsy get worse as they age because the muscles and tendons continue to tighten. That’s why physical therapy and stretching is so important.
  • Hot Yoga not only provides the much-needed stretching and flexibility but also the heat automatically loosens the muscles.

To explore A is For Abled, find their website here.