Tag cerebral palsy

Meet the Dogs

Angel Ackerman 4 Comments

Yesterday, I met the dogs.

Today, I woke up from a terrible anxiety dream for the second time this week.

The first anxiety dream had me working in the newsroom again and I was behind on stories because of my other jobs– and I missed a council meeting because of job conflicts. I considered quitting one of the other jobs and remembered the newspaper hadn’t paid me in a long time. (Yeah, about 18 years.)

This morning I woke one minute before my alarm from a dream where I was traveling, and I was attending some sort of Asian-themed conference in France. I suddenly found myself without plans for dinner and thought I would visit a nice restaurant. And at the last minute, I remembered my traveling companion M was in the hotel. I opened my phone to text and invite him and none of the apps would give me his number. I took out my iPad (I last had an iPad when they first came out, it was a first gen) and it wouldn’t work either. And then some guy tried to steal my iPad, realized how ancient it was and gave it back to me.

And then I got up and walked to the hospital for my bloodwork.

This is what happens when you overschedule, have been life events, and stuff happening.

So, I came to the magic table at Panera to write down my thoughts about the dogs.

We left around 11:20. It’s a 90-minute drive to Grantville, where Susquehanna Service Dogs has a beautiful training facility. Our appointment was for 2 p.m. but when traveling long distances for important appointments, I leave wiggle room for traffic, accidents and construction.

On this particular journey, we always stop at a certain Sheetz before Route 81 that we never remember where it is until we almost miss the exit. We stop here because it has a wall of icee and smoothie flavors. On this particular day, this is extra important because Eva has an ear infection. It is the same exit for Eva’s favorite Girl Scout Camp, Wood Haven.

We always think maybe we’ll stop somewhere else or visit something, but there’s not much out there.

But Eva got her icee. I probably should have gotten gas, but that place is always crazy. I still haven’t gotten gas, and that’s on my mind.

We arrived at the facility early. I checked my email and answered some business messages. We got out of the car and went to the building at 1:45 p.m. We went into the classroom at 2:05 p.m.

I met a whole panel of employees. Many of whom I’ve met before, some were new. The head of the agency was there. Everyone had tablets and paperwork. They asked me about my health, my life, and we reviewed all the tasks that I requested.

And then we got to meet some lovely yellow labs.

This process is long, and weirdly precise. They’ve had several weeks of people meeting various dogs. And they take notes on every interaction to try and match the person with the right dog– personality, energy, brains, willingness to do the tasks needed. If I match with one of these dogs, they will tell me I matched in about a month. But I won’t be told which dog. They train the dog for your jobs before they tell you who it is. Because it could happen that a dog couldn’t learn an important task, or that another dog was better for it. Or maybe a dog completely washes out of the program.

There’s a lot of moving parts.

And as someone who’s worked with animals my whole life, volunteered in cat rescue and dealt with/helped rehab difficult cats, and learned about dogs and dog training from my daughter and her business (and I inadvertently trained a chicken alert dog!), I get it. I trust them to know their dogs and to stand behind their work.

I met four dogs. They use the information from those four dogs to weigh options in the future if this doesn’t work out. So even if this doesn’t come to fruition, it helps get me to the best dog possible.

And man– looking at these videos I feel so old and frumpy. I hate watching myself walk, and I had frumpy even more.

I did attend the session with no muscle relaxers in my system after a long car ride. I wanted that dog to interact with me when I was more prone to need help.

Dog 1: Marlin

Three out of the four dogs were large and male and from the fish-themed litter. Marlon was the name of the local police officer who would come break up the fights when my mom and dad would have violent fights.

He was big, but not huge. He did his job well, had his basic obedience down. His only interest was food. He didn’t really want to interact with me socially, he actually back away a few times. But he did what he was asked to do. When we walked together, his heel was a tad drifty.

Dog 2: South

She was the oldest (by two weeks) and the only female and from the Wanderer litter. South is also cardinal direction associated with fire and creativity, but I can’t pick a dog on my witchy ways. At first I thought her name was Sal, then I thought Sol, like Sun. But when they said it again, I realized it was South.

Angel, a trainer, and SSD South

She had a bright pink collar. That’s my business color. And when I touched her– she didn’t feel like a lab. She felt soft. She was like a stuffed animal I wanted to cuddle. She came out and greeted me. And she was excited to meet me and interacted with me more than looking for food. She prances when she walks. She has a really nice gait. When we didn’t tell her to do anything, she sat down and focused on the treat pouch. When we still didn’t ask her to work, she flopped down on the floor and waited.

And she was small. Compared to the boys. I liked that about her. Some of the trainers said some people found it hard to treat the smaller dogs because you had to reach down. And her heel was tight– so much that when my treat pouch shifted she followed it. And because of that I thought I was failing her, when it reality, the treat pouch had moved. And when we were sitting and it came time to treat her, she patiently put her head in my lap instead of getting pushy like the boys.

They asked if I could take a dog home today, fully traied, who it would be. I said South. Eva said South.

Her small size would make my life easier with the strange and crowded types of public access we might encounter. And there’s a good chance this dog will end up on a plane or at the very least a train. But her mellowness when we weren’t working is great for my office days. And I believe the incident with the treat pouch shows she can walk on the right. That’s the main task we need.

Dog 3: Skip

My father’s brother was Skip. So another dog with a name from my past. And another fish. He was massive and a drooling mess. And I was told he was not a candidate, but they were giving him a chance to learn and practice by meeting me. He had me covered with drool. He was the biggest dog. And he had so much energy and pushiness. And he struggled with basic commands.

Dog 4: Pike

Smaller than Skip. Bigger than Marlin. Another fish. High energy. But fairly patient and responsive. If I needed a big dog, he would be my choice.

Do I need to put on clothes today?

Angel Ackerman Leave a comment

Tonight I have a long-for-me shift at the fast food restaurant. 4 p.m. to 10 p.m.

Tomorrow I have a very busy day– gynecologist appointment at 7:30 a.m., helping Nan with her stuff around 9:15 a.m., teaching in the afternoon.

Thursday, we are recording our radio program at WDVR. Then, selling chicken from 4 p.m. to 9 p.m.

So, today I wanted to send out our acceptance letters for the Greater Lehigh Valley Writers Group The Write Stuff conference, March 11-13, 2027 at the Homewood Suites by Hilton in Center Valley, Pa. And I almost sent one so far. It’s ten minutes from noon.

Did I do things? Yes. Were they important? Yes.

Just not what I intended.

One of the items I have needed to do is grab a few groceries. I have been very careful with my diet lately (which has led to a new number today, one I haven’t seen in more than a year if not since the pandemic when I started rapidly gaining weight). And my daughter made me get dressed and go to Aldi.

Why Aldi? I wanted chicken salad and shelled endamame.

They didn’t have chicken salad and only had whole edamame. I didn’t want whole. I also wanted a salad and all their greens and pre-bagged salad mixes looked past their prime. So I came home with baby carrots (which I don’t eat, and I was hoping to make carrot pickles but I didn’t get the vinegar…), plain greek yogurt (because the flavors have too much sugar, but I probably won’t eat the plain), half and half (but I did not get coffee), crab cakes, and cheese. And bologna. Cheap cheap bologna because despite my primarily vegan tendencies I just really needed a bologna and cheese sandwich.

And two boxes of protein bars since I didn’t buy much food.

I did not want to get dressed. Until later.

Yesterday, I had my annual physical with my primary care physician. It was the first appointment of the day, and he spent 45 minutes with me. I had told myself that I did not intend to bring anything up. That I wanted to get in and out, continue my own experiments into diet, exercise and sleep, and ask for follow-up bloodwork.

He went through my late June bloodwork I did for him and the mid-August bloodwork I did for the life insurance company, with me, and requested I do another A1C and some vitamin D and some stored Ferritin… He was surprised to see– that as I told him– my “bad” cholesterol and my weight change very quickly according to what I eat. It’s how I gained almost 15 pounds this winter and lost it since July.

I still think I am among a rare amount of people who really pay attention to their bodies and try to understand and improve. He also asked how long I’ve been off my blood pressure meds– and I said– “about a year,” and then I reminded him that my cardiologist knows, or at least I told her I would probably stop taking them.

“Your blood pressure is great,” he said.

“The pills didn’t help,” I replied. I was prescribed the beta blocker because of my single incidence of afib. I stayed on it because I hoped it would help my anxiety– specifically the way my heart will sometimes race for hours for no reason. But the medicine never stopped that. If anything (and I have yet to prove this, my evidence so far is purely anecdotal, it’s food. I think the right blend of high sodium and refined white carbohydrates makes my heart want to explode.)

And my blood pressure has maintained itself in a healthy zone the entire time I have been unmedicated.

But then my doctor found out, I have been having stress dreams, disrupted sleep routines and general poor sleep since incorporating more “easy food” and less of my “outside aisles of the grocery store” home cooking. And now he’s worried about sleep apnea, my tendency to display symptoms of mild clinical depression, and my inability to relax (or have fun). He offered me a temporary antidepressant, and I declined.

And then today I remembered… I have been on the waitlist for a psychiatrist appointment for almost a year. During my routine physicals last fall I talked with my entire care team (primary care, cardiologist, mental health therapist, and neurologist) about the prospect of trying a low dose of valium as a breakthrough medication.

According to my research, doctors often give valium to children with cerebral palsy to calm spasticity and help them sleep. I asked my team about it. No one has experience with that sort of thing so they referred me to psych. So I reminded my doctor of this is an email. I told him that on bad days I often take 60 mg of baclofen– so could we try a small dose of valium in a small amount of pills to see if I took 2 mg of valium instead of all the baclofen if that would calm my muscles, alleviate my twitching hamstring, settle my heart, reduce my spasticity, and allow me to (1) stretch everything, (2) sleep better and therefore (3) recover better.

Remember– my leg muscles are unable to relax. I can’t even describe what it feels like. Sometimes it feels like my calves are so tight they burn. Sometimes my thighs feel like bricks. So if my doctor thinks I might benefit from a little something… this might be the something.

And on my one tangent for today: I have been binge-watching Nurse Jackie. I never liked Jackie, found her repulsive as a person but the older I get the more I recognize the accuracy of the depiction of people in addiction. And my daughter brought up something vital to consider:

Is Nurse Jackie an unreliable narrator?

My daughter votes yes, because there’s no way that an addict taking as much shit as she does (especially as a nurse) could appear to have her shit together as well as she does.

Interesting thought.

I have reached the midpoint in the series, and I’ve never watched this much before. And she has entered rehab and thrown her husband out of the house. And I’m thinking about it.

Meanwhile, my daughter has been tracing ADHD and autism in her family tree. My daughter– from a young age– has been super keyed in to people’s minds, patterns and habits. And just like she’s freakishly good at seeing every ripple in a dog’s body language, she’s damn accurate with her psychiatric diagnoses. And she’s finishing her bachelor’s in psych at Lafayette, she’s also developed some ideas about medication (so I asked her to do one of her recent psychopharmacology assignments on valium). She’s wondering if I might have ADHD.

My response is typically that it doesn’t matter.

I have a disability. One that stems from lack of oxygen at birth. One known to affect GABA in the body.

I score fairly high on the ACE scale for childhood trauma.

My parents were alcoholics.

Did I inherit generational trauma? Probably. Do I exhibit everything from OCD to depression to anxiety? Yes. Because my brain never learned how to feel safe and/or let its guard down. I never relax. The last time I felt truly relaxed was during some good adult physical activities that I don’t get nearly enough of. And do you know how much I need to trust my partner to let that happen?

My daughter believes something interesting about this whole ADHD hypothesis. She basically said I have not allowed myself to fail enough to recognize the truth it what she’s said. AND that because of that no clinician could ever diagnose me.

Strange food for thought.

Reflections on Health Improvement (and other updates)

Angel Ackerman 1 Comment

Part One: Reflections on Life Insurance

Earlier this month, I received a letter from my life insurance company. When I turned 50, my term life insurance policy could no longer continue at the rates I had paid for 20 years… after all, I am old now and the likelihood of my death exponentially increases.

I thought I had reduced the coverage– after all, the house is almost paid for now and the child is almost out of college so the need to have a healthy policy no longer seemed so important. Now I just want to make sure the child can burn me up and dispose of my ashes. Apparently, I never complete the process and find myself receiving a new letter that my premiums are almost doubling, after they almost tripled last year.

I called the company, spoke with an agent, and reduced my current coverage. But to maintain a long-term policy at stable rates, I needed to prove I was insurable. I scheduled an appointment for two weeks out to have bloodwork, urine and measurements done as part of a physical. For that two weeks, I drank no Diet Coke, ate no added sugar, avoided salt and processed food, ate lots of fruits and vegetables, drank ridiculous amounts of water and took my vitamins.

I lost seven pounds in that two weeks. All while thinking about the fact that life is so much harder when you’re not traditionally healthy. It doesn’t matter if you’re fat or disabled or diabetic. Part of the issue with my life insurance stemmed from the fact that I had an incident of Afib with RVR after a bad fall four years ago. Here’s some of that saga.

I believe, and my cardiologist agrees, that the Afib occurred due to bodily trauma. It was my second hard fall in two weeks that required medical attention and my body had enough. I have not been taking any medication, and my blood pressure has been fine. (And part of me still wonders if food doesn’t play an issue in that.)

But I find myself thinking once again about the gatekeepers who decide what our lives and our bodies are worth, and yes, I’m referring to life insurance and medical insurance companies. It’s exhausting to have to prove to corporations and to doctors what goes on in our bodies.

I finally had a chance to look up the numbers for my test results (and I downloaded the PDF and sent it to my doctor). Most everything looks really good and even the results in the cautionary zone of normal (all the stuff that relates to blood sugar and what not) are still normal. So, we’ll see if the insurance company declares me healthy.

Part Two: Service Dog Update

Yesterday while I was in Maplewood, N.J., with R. Diskin Black, the poet and writer and YA novelist who wrote The Night of Swaying Grass, (an experience I wrote about on my Substack newsletter here and hope to write more here in another entry) I checked my email while we were preparing to leave the diner where we had a classic New Jersey meal: eggs and hashbrowns at two in the afternoon.

I had an email from my service dog program where I have been on the waiting list for a couple years now. This might be the first post I made about filling out the application. 4 years and one month ago. They said then that the process took 4-5 years. This is a post about my early in-person interview. And here’s one from my most recent visit to the training center.

ANYWAY.

The email was from Deb Tack, the executive director at Susquehanna Service Dogs. I open it.

Hi Angel,

I am reaching out today to extend an invitation for a Meet the Dogs session. Please read the following information on how to sign uo and what to expect:

I froze. “Meet the Dogs.” Does that mean what I think it means? My heart skipped a beat.

Now, a few weeks ago, I admitted to Eva that I often felt like I was a failure because I haven’t been able to pay off a $20,000 personal loan I took out when I lost my job at Stitch Fix. It hangs over my head like a car payment without the car. I mentioned that in all this time I haven’t touched any of the money that I have saved to pay for my service dog (some of which came from that $20,000 loan) and that maybe that shows that I should be working harder to pay down my debts, that I do waste too much money, and maybe I should use some of that service dog money to reconfigure some household debts.

“But,” I said, “If I did that, the service dog people would tell me my dog was ready.”

So… Is my dog ready?

I didn’t finish reading the email. I mentioned it to Ray, who in his professional life was a lawyer. I offhandedly mentioned, “Of course, this could happen now. I have my little part-time job in a restaurant so I wouldn’t be able to bring a dog.”

“Why not?” he asked.

“It’s food service. I could bring the dog there to eat, but I can’t bring the dog behind the counter.”

“Isn’t that discrimination?” he replied.

“Put your lawyer brain away!” I told him.

We continued our outing, and checked the oil in my car with a dryer sheet from Food Lion, and read the email in the car, quickly, and forwarded it to Eva without finishing it.

I texted her.

I sent you an email. If you want to call and talk about it, give me ten minutes to find the highway.

Eva, the practical one, replied: I’m leaving for work. We’ll talk when you get home.

When I get home, I don’t have a chance to talk to Eva right away. I book an appointment for September 25, because it’s the only day that Eva and I can both go. It means I have to reschedule my day trip with another author, Geraldine Donaher, but I think she’ll understand. Or so I hope. Then– and only then– do I print and read the letter.

– What is goal of Meet the Dogs? The goal of a Meet the Dogs session is to begin to understand what type of dog you fit best with and what definitive task list our trainers will need to train your dog to perform. We intentionally invite more Partners than there are dogs available to ensure that we are able to make a match. Not every Partner will match during their first session, and some may need to come back for multiple sessions in order to find their match. Overall, our goal is to match you with a dog that you will be able to have a successful bond and work well with for many years to come. 

– What happens during a session? Members of the Partner Services and Training staff will meet with you for your session. First, we will spend time discussing any pertinent updates and then delve into which tasks and cues would be most beneficial, as well as places that a trainer should focus on taking your future dog to train. Then, you will have the opportunity to meet 2 to 5 dogs-in-training, work with each individually for a brief period and provide your feedback. 

– What happens after my session? Following the session, the SSD team will meet to discuss their observations of the interactions with each dog along with the dogs’ responses and strengths.  Approximately six weeks following your Meet the Dogs session, you will receive an email regarding whether you have received a tentative match along with information regarding Team Training. 

– Can I bring someone to the session with me? Absolutely- We highly encourage that a support person/s are present. While they will not interact with the dogs during the session, they will be able to be a second set of eyes, help with building the task list and take pictures and videos should you choose. 

As you can see, there’s a lot of “maybe” in this whole letter– and there’s more when you schedule the appointment. The confirmation reads:

“More potential partners have been invited than there are available dogs to help us ensure we find the right placement for each dog. We know everyone has waited a long time, and those who do not receive a tentative match will experience disappointment.”

No, I won’t be disappointed. I have no doubt the dogs will know. The right dog will find me and any potential disappointment will be flanked by resolution and commitment– that the closer I get to meeting my dog, the more I have to take care of myself, the less excuses I have, so that my service dog and I will have a good life together. When I think back to the animals in my life that meant the most to me, I didn’t pick them. They picked me.

And this dog– this dog is a working dog. This dog has to want to work for me.

Some things are worth the wait.

Some general background

I have applied for a light mobility service dog to improve my gait and help me recover from falls. Statistics show that walking with a dog automatically helps people with an unsteady gait walk better, and my dog will do small tasks of retrieval (fist aid kid, light folding stool), potentially carry items if I need my hands, get my phone if I need help, or pick up items from the floor if I can’t bend. Crazy to think that the steady walk of a dog, and being near it, could decrease my likelihood of falling.

The program with which I am working breeds their own puppies, sends the puppies to families for raising and basic obedience, and only when they are two years old can a dog ethically be cleared for light mobility work. The dog must be cleared by a veterinarian to be healthy enough, big enough and have the bone structure to do such work. If I understand correctly, once the dogs return from their puppy raiser families, they learn certain tasks ALL their dogs learn. Like how to walk with different gear.

And depending on the type of mobility gear– only certain dogs will do that work. A mobility service dog can wear a hard hardness, a soft harness with strap, or just a leash. The bulkier the gear required, the more likely a dog might not want to wear it. In my case, I would be fine with just a leash, though a strap might not be the worst thing.

But there is one potential hang-up for my dog… In my evaluations, if I remember correctly, we determined that while they train the dogs to walk on the left, my dog needs to walk on the right, and the ambassador dog I was working with did not like walking on the wrong side and fought me a little. Apparently, according to Eva, I walk like a drunk with the dog on the left and walk in a straight line with the dog on the right.

Once the dogs are tentatively matched– and the dog could still wash out so even that is not guaranteed– the dog spends time training for the tasks for its handler’s specific needs. Then, a few months later, the dog and its handler spend more than two weeks in an intense in-house training program.

So, it’s an exciting time, and either way, I’ll meet some cool dogs.

Why the Disability Struggle Impacts All Humans

Angel Ackerman 1 Comment

It’s Monday morning, and while my red blood count maintains there is nothing wrong, my body shows the signs of anemia, which feel better when I follow a strict regimen of healthy eating, vitamin D and iron supplements… but that is something my primary care physician and I will discuss at my annual physical in September. And he will probably express disappointment that I have regained the ten pounds I lost last year.

It’s true for all of us– when we’re sick or weak or broken, we take care of ourselves (or we try to, I hope) and when we feel better, the routines that help us maintain that wellness fall to the wayside and lean toward repeating the same problems. I know I have a 20-year history of struggling with low ferritin reserves, why don’t I do better to always keep a routine of quasi-regular supplements?

Many disabilities are permanent but not progressive. And most people experience disability at some point in their lifetime– either congenital, temporary or permanent. Any person with a disability or aging person can explain the weight of co-morbidity, that while their various issues alone may not be progressive, when combined with our temporary or new ailments can make life exponentially harder.

My mother struggles to understand how I could be so easygoing and mobile as a kid while experiencing more falls and discomfort now. As my mother, she is no stranger to the aches and pains and limitations of aging, but she didn’t connect that the running and playing and constant activity I had as a child kept my muscles looser and healthy in a way that I can’t match as a fairly sedentary adult. That’s part of the reason why I’ve usually had a part-time job that requires movement and pursued strength training as a hobby.

I know that I need to lose 30 to 40 pounds. As a person aging with cerebral palsy, this would help my cardiovascular system and help take so much stress off my musculoskeletal system. But I have learned, through years of strength training and nutritional counseling that my body reacts strongly to salt and sugar, which means if I wish to lose weight I need to not only increase my activity level, but also cook whole foods, every time. The vicious circle of “I don’t exercise enough because my body hurts/I can’t breath/I’m tired” perpetuates itself because the only way to get past the discomfort is to do it… and survive and persist. (And then there’s the ironic reality that you can overdo it, and hurt yourself trying to do what’s right.)

This is not a disability struggle. It’s a human one.

All people experience a disappointment in and/or failure of their body. It’s a point Johanna Hevda and Julia Watts Belser both point out in their work. They claim that everyone experiences disability within their lifetime, but I extend that same idea to say that all people at some point experience some sort of body dysmorphia. Even if your body works, and is completely normal, people will experience dissatisfaction with it at some point. Maybe you hate your hair, struggle with your weight, identify as trans, wish you were a better athlete. All of these experiences have nothing to do with disability, but stem from the body.

A pile of three disabilty-themed books. The top one, How to Tell When We Will Die: On Pain, Disability and Doom by Johanna Hedva, is pink with red stars. The next on the pile is a beige memoir, FIfty Years of Walking with Friends, by DeAnna Quietwater Noriega. The one on the bottom is vivid yellow, Loving Our Own Bones, by Julia Watts Belser.

Disability Pride Month is celebrated in July because that’s the month when the Americans with Disabilities Act was passed. I didn’t put that together until today, so if you needed that tidbit of knowledge, there you go. I happened to order a whole bunch of disability-themed books in late June because my good friend Nancy Scott told me I should be doing more writing in that space, and she’s right, and she’s tired of hearing me say, “when I write my medical advocacy memoir.”

The four books from the disability space that I read this Disability Pride Month:

  1. How to Tell When We Will Die: On Pain, Disability, and Doom by Johanna Hedva
  2. A Disability History of The United States by Kim E. Nielsen
  3. Fifty Years of Walking with Friends by DeAnna Quietwater Noriega
  4. Loving Our Own Bones: Disability Wisdom and the Spiritual Subversiveness of Knowing Ourselves Whole by Julia Watts Belser

I have been working to expand my collection of books by writers with disabilities. I currently have read books that range from poetry to books with characters on the autism spectrum, though none of these books include my fascination with medical fiction, a realm where Michael Crichton and Frieda McFadden spend some time, and one of my favorite memoirs (An Exact Replica of a Figment of My Imagination) which covers pregnancy and pregnancy loss simultaneously. My Goodreads shelf of “disability” books is visible here.

Poets with disabilities on my read list include Jennifer Bartlett, Larry Eigner, Susan Glass and Nancy Scott. Twentieth-century memoirists on my shelf who explore cerebral palsy include Christy Brown and Marie Killilea, and then there are the people I know, like Tylia Flores (we connected via the Internet) and Peter Altschul (who like DeAnna above is a member of the Behind Our Eyes writing group).

Here’s a very brief review for each of these four books:

A copy of A Disability History of the United States
  1. On Hedva: I already wrote a long piece about this one, primarily to keep my own notes accessible for future use. You can read that here. Hedva is a queer writer who uses they/them pronouns and has issues with chronic pain and bipolar depression. Their essays are not a cohesive unit, but based on an essay that gained them a publishing contract when it went viral. Their greater thoughts about disability are steeped in personal experience, and often tied to their sexual experiences. But this author challenges us to view the difference between capacity and capability, just because we are capable of something does not mean we have the capacity to do it.
  2. On Neilson: Nielson ended up researching disability as an accident (or serendipity?) as she worked on her history dissertation. Hedva writes philosophically about the capitalist resistance to disabled bodies (as we are worthless if we are not productive to society) and Nielson uses her history background to explore how the capitalist framework has disenfranchised all bodies that are not able-bodied white men, which I found hysterical because one of my publishing company’s initial projects was an anthology, Not an Able-Bodied White Man with Money. See that book here. She weaves together the plights of women, people of color, and people with disabilities into the same historical framework– all of them had bodies deemed inadequate and incapable and inferior by white men.
  3. On Noreiga: This was my first time reading one of Noriega’s books. She’s a self-published author of indigenous heritage who lost her sight as a child. As someone on the waiting list for a service dog, I thought it would be fun to start with her experiences with her (I believe) eight seeing-eye guide dogs. The memoir covered the first decade-ish of Noreiga’s life in autobiography format. The final chapters each provided a summary of her later-in-life seeing-eye guide dogs. While the book did offer insight as to how these dogs perform their complex duties and build relationships with their handlers, the primary focus of the book is Noreiga’s college years and first few years of marriage.
  4. On Watts: Nancy Scott ordered a Braille copy of this from the library at the same time that I ordered the print copy, and that was sheer coincidence. Some of Watts’ ideas are beautiful, like her interpretation of observing the weekly Sabbath as a tribute to not only spirituality but also to her body as an opportunity for rest. Like Heva and Nielson, she laments the push for capitalist societies for valuing bodies only on their capacity to do work– but I think all of these writers need to consider the role of industrialization in all of this. We are no longer in agrarian societies where families live and work together communally and therefore can cater the work to individual strengths and weaknesses. Watts treads a strange line. As a queer rabbi with cerebral palsy and a wheelchair user, she tends to tell us minimal information about herself, yet connect her spiritual journey to her physical one without giving us all the details. In many passages, her affluence shows through, that her financial resources and life situation have provided her with more opportunity that the average disabled person. And she seems to have a fascination with the potential amount of times blindness appears in the Old Testament. As said before, her ideas and themes overlap with Hedva and Nielson, and she focuses on building a relationship with God where you are whole and representative of God in your broken/disabled state. She applies this to beaity standards as well.

I will be revisiting some of these thoughts in my Substack this week,

Disability Lit Review, part one

Angel Ackerman Leave a comment

Let me offer a bit of an author’s note on this one, or perhaps a caveat, that I only got five hours of sleep last night, and my body hurts today. This is the third night this week I got six hours or less of sleep, due to some fairly intense routine change that is kicking my ass. And the pain I am experiencing today is not my standard everyday pain, but similar pain in a more twitchy and unnerving form.

And this may lead to some of my more strident tones. Or perhaps I always feel my opinions with a certain sharpness, but ordinarily I present them after the application of a filter.

I will try to keep my aggressive aggravation to myself, but no promises.

Earlier this month, I drafted a “bird piece” for the Behind Our Eyes anthology, a collection in the works to highlight the members of the Behind Our Eyes email-based writers group for writers with disabilities. I joined the group a couple years ago after participating on the fringes through Nancy Scott, who, in cheap amusement and most things disability, is my partner in crime. I normally lurk in the group, but recently heard they were actively looking for bird stories. The anthology features a variety of sections and one themed block focuses on animals.

I wrote a creative non-ficiton piece about my Goffin’s cockatoo and I navigating disability together, with a present-day, present tense story of Nala plucking her feathers due to her anxiety and me trying to figure out why. The plucking led to her not being able to fly, which gave her a temporary mobility disability. So I used this present-day situation to frame flashbacks exploring why Nala was anxious, but also looking at my mobility disability and the similarities and conditions that made us good for one another. The anthology committee wanted just a bird story, so they’ll be publishing the present-day section of my interactions with Nala.

This was the first of two pieces I wished to submit to disability-associated anthologies. I have drafted the second, but that one is specifically for disabled voices to share what we wished the outside world understood. I revisited my first draft, and tightened it somewhat, and thought the piece sounded like an introductory chapter to my upcoming medical advocacy memoir. That piece has two themes– the beginning talks about how my family had too many problems for me to realize I was “disabled” which seques into the second half, about me finding out my body and assembling an adequate medical team.

Nan has been encouraging me to write more in the disability space, her paraphrased quote being that I could have a real impact there. And in my experience, there are two main types of voices in the world of disability literature. The most mainstream voice is the voice of the writer-first– commonly a writer who experienced illness or disability not from birth, with either some sort of privilege or talent. The second is the disability activist who is not a writer, but congenitally-disabled and fighting for their right and the resources to exist. (And I guess the third would be the hobby disabled memoirist.)

I find myself crossing all these categories. I have the natural writing talent, my background as a professional journalist, my credentials as an academic and historian, and the experience of a congenital disability. Yet, I have the privilege of being a white woman, and if I can borrow the term, I can “pass” as an able-bodied person if I focus really hard and am having a good day. I have the type of cerebral palsy that you might not notice or that might make you stare at my feet and knees.

This morning on social media, I saw a post from a disabled Iraqi/Afghan War veteran stating that he needed to retire his service dog as she had had a seizure. The man said that his career involved much travel and public speaking as an influencer and motivational speaker. I searched the internet for him and found a very basic web site, some YouTube videos and an Instagram, but no information about him or the experiences that lead him to be a motivational speaker.

Now, in everyday life, people with disabilities do not owe information or an explanation to anyone regarding details about their private lives or medical conditions. But if you build a career on your experience coming back from a disability, I think some of that information is owed to prove the validity of that expertise. (And if you are an influencer, a Google search should turn up some information about you.)

What I am about to say next is going to make me sound like an ass, and I mention to not to invalidate the experience of people with disabilities who fit the categories as I am about to describe– but the lived experience of a Cis white heterosexual male in the United States of America who develops a disability after voluntary service with the military is very different from the experience of a person who has never been able to walk, has a limb difference, total blindness or any of the multitude of disabilities that occur at birth.

(Add in family resources, and there’s another layer of complexity.)

Some people have more choices. Some people have more privilege.

ALL people living with ANY TYPE of chronic illness or disability deserve the same respect, but one must understand that they all come from different places. As all humans do.

This has led me into a brief literature review of the disability space, one I have only explored via finding books written by ordinary people on their experience with disability. My list included the third anthology from Behind Our Eyes and a service dog memoir by one of its members, Peter Altschul. I have a collection of books with connections to cerebral palsy: several modern memoirs by Tylia Flores, a pre mid-20th century memoir by Dubliner Christy Brown, and Karen, a parent’s cerebral palsy memoir that takes place about 10 years after Christy Brown, and then poetry and academic work by Jennifer Bartlett. And a highly academic poetry book by blind poet Susan Glass.

A copy of A Disability History of the United States

I recognized my need to diversify… especially as I start more work on my medical advocacy memoir and consider making more deliberate strides into this space.

Here’s what I ordered:

  • A Disability History of the United States by Kim E. Nielsen. I believe this was Nielsen’s Ph.D. thesis in history. In her introduction, she mentions that she is a white woman of certain privilege, and she ended up in this space by accident, with no connection to disability. Then, shortly after receiving a publishing contract for this book, her teen daughter contracted an illness that made her a wheelchair user and gave her a more personal glimpse of the issues she had talked about.

I finished this book yesterday, and it’s definitely an important work, exploring hundreds of years of attitudes and events about disabled bodies. Nielsen aligns disability rights with other civil rights, for women, for Blacks, for gays. She presents the idea that any body that is not strong, healthy, heterosexual, white and male faces the same discrimination and lack of belonging in the American social structure. And ALL of these bodies are disabled and deemed as unsatisfactory as part of the capitalistic labor machine.

It’s an important work that shows how ideas about disability evolved and how legal status/rights have changed.

Today I started:

  • How to Tell When We Will Die: On Pain, Disability and Doom by Johanna Hedva. This is Johanna’s fourth book, and the bio on the back lists them as a Korean American writer, artist and musician raised in Los Angeles raised by a family of witches.
A pile of three disabilty-themed books. The top one, How to Tell When We Will Die: On Pain, Disability and Doom by Johanna Hedva, is pink with red stars. The next on the pile is a beige memoir, FIfty Years of Walking with Friends, by DeAnna Quietwater Noriega. The one on the bottom is vivid yellow, Loving Our Own Bones, by Julia Watts Belser.

Their introduction mirrors a lot of the same concepts about the issues disabled people create for American capitalism. Their experience though is one of disability after chronic illness. I have only reached page 28, and Johanna mentions a decade of chasing a diagnosis, but states that they inherited chronic illness from their mother and grandmother– which leads me to wonder why a diagnosis was such a mystery?

I suspect the reality is that Johanna had trouble finding a doctor to label the diagnosis officially, which is the “doctors are idiots” and the “American healthcare is broken” problem not that Johanna didn’t know what was wrong.

I hope Johanna eventually shares their disability with the reader, but as of yet it has not happened, and again– I know no one is entitled to know the private details of another person’s medical situation, but it is important when one is standing in a public space claiming authority regarding such issues.

The other two books on my new acquisitions are:

  • Fifty Years of Walking with Friends, another guide dog memoir by BOE member DeAnna Quietwater Noriega. I added this one to the list because of Noriega’s Native American heritage.
  • Loving Our Own Bones: Disability Wisdom and the Spiritual Subversiveness of Knowing Ourselves Whole by Julia Bessler Watts. Julia is a queer rabbi. This book was recommended and you had me at queer rabbi.

Seasonal summary and hoping for new beginnings

Angel Ackerman Leave a comment

My daughter is in the garage doing yoga right now– an old set of yoga DVDs I found on a discount pile somewhere 20 years ago. I used to used those DVDs once or twice a day, each routine a mere 20 minutes, and its impact huge on my body. I should be out there with her right now, but although it is 8:30 in the morning on a Sunday, I am already knee-deep in work. So maybe after my 9 a.m. meeting I will give it a go on my own.

I’ve had some successes in life lately, but health and fitness is not one of them. I’ve been struggling with my mobility since before my trip to Ireland in March. Some of that is due to lack of movement in my routine. Some is due to lack of chiropractic care and not enough stretching. Some is weight.

But now I’m experiencing more and more symptoms of anemia. What started as mistyping words– not misspelling but using completely different words: “basket” coming out of my fingers instead of “basic” and “winter” instead of “window”– has nos (and I just typed “not” instead of “now”) escalated to incidents of brain fog (driving past the bank instead of to the bank) and drinking too many caffeinated beverages without feeling their impact and literally not being able to keep my eyes open at 2 or 3 p.m. despite having healthy sleep hygiene and getting to bed on time. And all of these symptoms get worse with the heat and the sun. Which is also classic anemia.

I scheduled my annual blood work for tomorrow morning at 6:45 a.m. It’s not due until September so the insurance company will probably love that. I also left a message for my chiropractor, Nicole Jensen at Back in Line, because even though it puts a strain on my finances, I need the care.

My right leg is definitely leaning into its femoral anteversion, and the best way I can describe it is like I have a tree trunk instead of a leg that I’m dragging around. And then once it’s a little straighter and not locked into a weird position, any yoga I do will help keep things limber.

I started taking my vitamins last week: vitamin D/calcium with breakfast, iron with lunch, and vitamin C with dinner if I remember).

I’ve also cleaned up my diet and I think I can say that except for breakfast with Laurel at Panera on Tuesday, all food has been prepared at home. I have tried to make sure I get more fresh fruits and vegetables and include a protein with every meal. With this routine, I have lost five pounds this week. And I know that is all the sodium/water weight leaving my system. But if I with another 7 pounds off this summer, I could be at the weight I was last fall when I saw my primary care physician last fall.

Both Eva and I have struggled with motivation to eat so far this spring/summer season… We’ve both been busy, stressed and exhausted. Eva’s taking an online American Sign Language class through Purdue University and her midterm is tomorrow. It’s really cool to watch her learn. And to help her study.

We’ve both taken to finding items that are easier to eat. Often these are easy-to-grab meat products and snacks for her, and meal-prepped items like overnight oats for me. Last night we both needed something for dinner so I made tuna fish sandwiches which also helped us use some of the aging iceberg lettuce in the fridge. I’ve been adding kale to everything I can, especially pasta and eggs. My other coup was a make-your-own quesadilla bar– I had flour tortillas, corn tortillas and refried beans from the dollar store, all items I keep on hand (in addition to beans I cooked from dry and froze, in seven different varieties); we had lettuce, tomato, and onion left over from burger night; and on a whim, I had just purchased sour cream and a huge block of cheddar. We even had fresh limes to give everything a citrus kick.

Speaking of food, I’ve been tracking my food in the Omada app again. I still believe the Omada program is a waste. If you have issues with food and weight and health and don’t have a previous understanding of nutrition I can’t see it helping. It only helps me because it reminds me what I’ve eaten, how I’m trending and gives me some basic nutritional summaries. But the fact that my insurance company gets charged $30/month just because I stepped on a scale is nuts. My coach is really good, but for the most part she can’t tell me anything I don’t already know.

So much of health is making the hard and responsible choices.

And doing what you need to do.

It’s also the only app/system that gets worse over time. Their AI-driven logging system can’t identify basic foods, and when you try to edit the listings with information from the actual label, it just ignores you. Omada does not believe in tracking calories. It encourages instead you make better, educated decisions based on your hunger and how you feel. I understand that calorie-counting can lead to some psychological issues, but in the end, weight loss is math. They do track fiber, added sugar, protein and saturated fat. But not sodium. If you have a chronic weight or heart problem, you need to understand sodium.

And they encourage you to aim for 50% nutritous. I average 50% on any given day. Today I’m at 57% so far, but I’m due for lunch. That may change. Now, if you know me, you know– I try to make my meal choices as close to vegan and minimally processed as possible. I had gestational diabetes when I was pregnant with Eva, and trying to eat 2800 calories in six meals a day with no sugar on a vegetarian diet got me very bored. Thank God I decided to incorporate tuna into my routine. I can still remember some of those routines. My ten-thirty a.m. snack was large curd cottage cheese and usually strawberries or raspberries and my 8 p.m. snack was decaf coffee and unsweetened soy milk. (I had to do something to make the “milk” drinkable.) I still can’t look at a plate of food without seeing its protein and carbohydrate estimates in my head.

screenshot of the Omada app showing the list of protein, fiber, fat and sugar stats

Most people don’t have my experiences. And I know myself. For instance, if I eat a meal out, even if I make the good choices, I will gain 3 pounds the next day.

Most people don’t stay invested in their choices like I do– so if I only eat 50% nutritious, how does a standard American diet rank? I wouldn’t want to know.

So far today, I have had:

  • about 16 ounces iced coffee with a healthy pour of half and half. (That comes in at 50% because the coffee is considered a healthy drink, even if I drink it at every meal. The half and half on the other hand is not nutritious, because of its saturated fat content, but it has calcium, vitamin D and protein and isn’t sweetened or processed like other creamers.)
  • For breakfast, a little more than half an apple with skin on, with cinnamon sugar and mixed nuts. Water, 30 ounces, and one scoop of my Powdervitamin electrolyte powder which has no calories, is the most dense with minerals and salt, and sweetened with stevia. But because of the sugar on my apples and the powder, that again ranks my meal as only 50% nutritious. I could have used a processed caramel fruit dip or an icing and Omada would have ranked my choice as just as it did when I added just a touch of sugar. And the electrolyte powder gets treated like a sugary Gatorade even though I need that supplement to prevent orthostatic hypotension because I don’t eat many sodium-rich foods and I drink so much water. How many other people drink 50+ ounces of fluid before 9 a.m.????

My plan remains simple… More movement, more yoga, eating at home, and not eating due to stress. And in a few months or maybe a year I will write a blog post like this. Again. Which I do so frequently. As I struggle and fail and disappoint myself. But permanent change is a long game and it’s hard when the only person who holds the power and the motivation is yourself.

The Medical Refund I Didn’t Ask For

Angel Ackerman 1 Comment

I keep promising myself that I won’t let this blog anguish and fade into nothing, and then I fail. If you miss me, check out Parisian Phoenix Publishing on the web or social media or sign up for my weekly-ish Substack newsletter. (Which you can do here.)

While I keep intending to do more jovial hometown adventures and life updates about the cats, the bird or the dog, it doesn’t happen. (We have TWO dogs this week as we have a jovial mutt with us as a boarding client. He’s a joy to be around, and he’s such a confident and stereotypical dog compared to our depression-prone backyard-bred pit mix.)

Eva’s dog has received a custom muzzle as a safeguard against her fear-based reactivity. And the difference it makes in our ability to trust her with new dogs and people and her comfort while wearing it is amazing. If you have a dog with issues, a custom muzzle is a game-changer.

But today I want to talk about what happened when I returned from Ireland regarding my emergency room visit two months prior. And I might sound like a conspiracy theorist, but it is what it is.

I have a high-deductible, employer-sponspored health plan through my husband, but as we are separated, I do not ask him to use his HSA. The HSA absorbs a lot of those out-of-pocket expenses. And my husband’s employer gives him money for the HSA as an incentive to take the high-deductible plan.

I have done the math. As a family, we have had the high-deductible PPO plan for 20 years. It sounds scary at first, but the monthly premiums are way cheaper than the other plans and the PPO allows us to see any doctor we want when we want, and when you have chronic issues, that’s important. I briefly had an HMO in the late 1990s when I had never had any health insurance before and no real medical treatment post age five, and my primary care doctor sent me to a podiatrist who specialized in ankles for my gait issues because he was pretty much the only provider in network. He told me there was nothing anyone could do without finding a provider in a major city.

And by the way, he was wrong.

If you don’t know, a high-deductible plan means that the insurance company pays nothing of any of your expenses until the deductible is met. In my case, that’s $3,500. BUT, my out-of-pocket maximum is $5,000 a year.

The ER Bills

As you may recall, (if not here it is: the original post and the ortho follow-up) in early January I had a fall and I debated between going to the ER or the urgent care because of my history with afib after bodily trauma… I was not in afib, but I did break my thumb, which has not fully recovered.

That fall led to about $800 in out-of-pocket orthopedic specialist bills and about $3,000 for the emergency room. Now, I use AblePay which allowed me to schedule payments for these services and gain a cash discount. For the ER bill, I opted to pay more than $2,000 in one lump sum of my American Express because it allowed me the largest discount. I then used the AmEx PlanIt feature to schedule that into monthly payments for a fee instead of accruing interest. In the end, I didn’t save money but it allowed me to space the payments.

But then… randomly, a full month after I paid 100% of the ER bill in a lump sum of on my credit card, my insurance company (Capital Blue Cross) decided to renegotiate the bill– which remember, they did not pay. I did.

I did not know this was happening. I was less than $200 away from my out-of-pocket maximum for the year so I scheduled regular chiropractor appointments and a mental health check-in with my therapist. The chiropractor appointments help me not twist my body into weird contortions that further cause complications from my irregular gait, and since my chiropractor Nicole was originally a physical therapist, she helps me stretch and monitors my gait to make sure my feet “do feet things.”

So, while I have debt from the ER visit, I can now have chiropractor appointments every other week for a small coinsurance amount ($40). And that is a huge help to my mobility.

On a Friday afternoon, I get an email from AblePay and a notification from AmEx that I had a $1700 refund on my recent medical bill. Which sounds great, right?

I logged onto Capital Blue to see what was going on, and indeed they had renegotiated my bill, which rolled back my previously met deductible and out-of-pocket maximum. And I had two chiropractor appointments and two therapist appointments that I was now responsible for. That’s about $700.

And I know what you are thinking, that still leaves me $1,000 ahead. But oh no it does not. Because remember, I had only paid one payment of my planned credit card charge. So the whole refund went to the charge, and I still needed to pay the remaining several hundred.

I negotiated a payment plan with my therapist and canceled all my upcoming chiropractor appointments.

I wish I could tell you that was where the story ends.

Present Day Repercussions

When I was in Ireland, I walked a lot more than usual. A lot more. As it was a relatively last-minute trip, I didn’t have a chance to try and get myself in shape. So I attributed the discomfort to my out-of-shape-ed-ness and called it a day.

But I am experiencing problems again. For the last week, I have been experiencing increased muscle pain in both my legs. My left leg usually does not hurt. My right leg always hurts. Like every day, I experience at least a pain level one but typically two or three. It’s like there is a braid of muscle that splits the back of my thigh muscle and presents with a constant pulsing, ache. But increasingly, my calves are experiencing extreme, painful muscle stiffness, in both legs, and my knees hurt.

My flexibility is better than usual, and I have no problems with my back, but if I touch the floor, it kills me to straighten my legs.

And this morning, after a week or so of this, and several days of feeling like my legs aren’t attached to my body when I walk, I started to cry. I caught myself, but I still started to cry. I took an extra dose of my baclofen– at double strength, and that made the calf pain go away. But I’m struggling to use my legs. And I’m getting damn tired of it.

I have tried to find and label what muscle hurts, but I can’t.

I suspect I need physical therapy. I have tried to take short but regular walks, making sure that I hit at least 5,000 steps daily, but I think it’s too little too late, and my muscles have forgotten how motion works. This winter was hard, long and cold; and with my part-time fast food job laying me off, I don’t stand and walk as much as I have during the last year.

But that leg pain I refer to as a braid? That started shortly after Stitch Fix closed. I think because I went from a job where I stood eight hours a day to a sedentary job. That’s almost three years of the same pain. That has now intensified.

So, why don’t I call the neurologist?

Because she costs $220.

And if she wants tests, I can’t afford those.

And If she agrees that I need physical therapy to stretch out and retrain muscles, that’s thousands of dollars. It sounds ridiculous. That a six-week physical therapy session would rack of thousands of dollars, but when I broke my ankle, which was TEN years ago, that cost me $5,500. That deductible and co-insurance adds up.

This is when I miss my Medicaid.

Becuase I work hard, everyday, and I just can’t afford the treatment and maintenance that would improve my quality of life.

And it sucks.

To make a choice everyday to deny yourself care you need.

Because of money.

And I believe– and maybe I’m wrong– that Capital One renegotiated my ER bill because I hit that out-of-pocket maximum and they didn’t want to pay my upcoming bills.

Our health care system, specifically for-profit, employer-sponsored health insurance, sucks.

It’s broken.

Broken Thumb

Angel Ackerman 3 Comments

In 2023, I had two falls close together (two bouts tumbling down the stairs in two weeks) and in general, I tend to fall more in winter (and not even outoor falls due to weather and ice). These two factors and my hospitalization with AFib after my falls in 2023 led me to go to the emergency room yesterday because of my fall at lunch time on Wednesday.

(For more info on my hospitalization in 2023, click here.)

I just wanted to make sure that this fall didn’t lead to a sequence of falls.

In similar cautiousness, today I visited my old ortho practice from when I broke my ankle in 2016. That’s the infamous “I broke my ankle and went to the Chinese buffet before heading to urgent care for an x-ray” incident. Read more about that here.

I felt silly, because my injury is pretty minor compared to other orthopedic cases. The ER told me that if it didn’t feel better in two weeks to follow up with ortho.

But I know from past breaks that the first two weeks is when the healing really solidifies and if it heals wrong, I would have more problems. And I wanted better direction on how to splint it, a better splint, and confirmation it was broken.

It is. In two places in the knuckle.

This is my right hand. At this point only one finger of my right hand has not been screwed up in some capacity.

And the doctor seemed to agree with my fastidiousness. He gave me a better splint and some first aid tape and told me to come back in four weeks for a follow up and new x-rays. His assistant gave me some Coban tape and some buddy strips for the splint.

I have a high-deductible insurance plan and I do not have an HSA, so I know I will pay more than I want to for this, but it’s my dominant hand and I need it to work.

Playing my favorite game: ER or urgent care?

Angel Ackerman 2 Comments

Yesterday, in a strange turn of events, I had a fall. More of a trip.

But let’s back up. Remember that tire incident from my last post? The day after that post (which was not the same day as the incident) I came down with an ailment that still has me congested and softly coughing.

I have to wonder if I had COVID.

It’s only been the last few days that I’ve felt myself. And that might contribute to the perfect storm that put me in this position.

I forgot to take my baclofen yesterday and all I had before I went to pick up Nan for our errands was coffee and a couple Munchkins. (With Eva on vacation, those of us left behind had to take the dog to the Dunkin Drive Thru window.) I even forgot to take my blood pressure.

When I got home, it was probably 11:40. I had coffee from Panera and groceries in the car, as well as some plastic bins from the dollar store to organize the deep freezer.

I brought the coffee in first and got the dog out of the crate. The backyard had a lot of dog poo, and I wasn’t sure she peed.

So I put on her collar and her prong, leashed her up and checked for dogs and people. We went across the yard.., and the mailman popped off a porch four houses down.

I had not put on my hands-free, waist, back-up leash. So I dropped to my knees to better control the dog lunging at the mail carrier. I got her settled (the dog, not the mail lady) and put her back in the house.

I went to the store to get the items from the dollar store. The mail lady approached me to give me the mail. I accepted it, placing it in the large-ish plastic basin containing all the items from the dollar store.

I turned, got my foot caught on the dog’s outdoor place stay, and fell. I fell with a bit of a twist, landing both on my stuff and on my right thumb.

Assymmetry percentage

I landed on the sidewalk and along the steps.

I smashed the basin. It never even made it into the house.

The fall probably happened around 12:20. My watch didn’t register it as a hard fall, probably because the basin broke my fall and prevented more serious injury.

The thumb hurt but it moved well, so I took my Baclofen, had some lunch and sat down for a while. My phone suggested my gait had been awful that day.

Thumb directly after accident

At 5 p.m., I did a shift as the front counter bagger at Chick-Fil-A. 4 hours.

Had dinner. Came home. Went to bed.

Woke suddenly in the middle of the night. My thumb hurt and it was bending less than it was earlier. I went back to sleep, planning to go to urgent care in the morning. The recycling truck came around at a bit after 4 a.m., woke me, and I couldn’t get back to sleep. I decided that even though I got less than five hours sleep I would just get up.

When I looked at my phone, I noticed a series of notifications. Apparently, my heart rate had been high while I was sleeping. Since I had that afib incident after my falls in 2023, I did an ecg on my phone. It was fine.

I headed for the bathroom. And as soon as I opened my bedroom door, I had to fight not to urinate on myself. With no warning. As I got closer to the bathroom, it was harder not to lose control– and in the end I didn’t really make it.

Thumb in the ER

Now my thumb would not bend at all.

I began to wonder: Do I have too many complexities for Urgent Care? With my disability and my heart history…

At 5:30 a.m., I decided to bite the bullet and walk to the ER.

A ten-lead echocardiogram was normal. Thumb shows a possible chip fracture.

I came home and called my neurologist, who is also a physiatrist, leaving a message in case she wanted to see me since I had a weird combination of symptoms. The person who assisted me asked me all sorts of questions.

While on hold with their office, I looked up the number for the Institute for Hand and Upper Extremity Rehabilitaton. I have worked with their therapists for two of my previous finger injuries on my right hand. They are now closed.

The person on the line with me from the neurologist’s office suggested I call the orthopedic specialist, especially since it’s the same doctor whom I consulted with when I broke my ankle ten years ago. The ER advised I call them if it got worse or did not improve.

But I would like to confirm whether or not it is broken and get a better treatment plan than this huge, cheap splint the ER gave me.

The person on the phone at the ortho’s office assured me that it was smart to be seen, right away, versus waiting for time to pass. She even had a cancellation for tomorrow morning.

So I guess we’ll have more updates tomorrow.

We now have a deep freezer

Angel Ackerman 1 Comment

We recently got an old, hand-me-down deep freezer.

And at the same time, the federal government shutdown and Pennsylvania state budget impasse have complicated SNAP benefits for families who have them.

I heard on the news that 1-in-8 Americans have SNAP (Supplemental Nutrition or “food stamps”). I heard one story this morning about an unemployed widow with a 15-year-old son whose soundbite suggested she sent him to school so he could eat breakfast and lunch.

I hope she’s sending him to school for an education, first and foremost.

I consider myself a fiscally-conservative Democrat who believes that education and healthcare should be attainable and fair. I would love to have a Ph.D., but I can’t afford to finish my masters and I refuse to go into debt for it. I also have a disability, and even when I am well-employed I often have to make choices about my medical care.

Right now, I have my own small business. I work a part-time job in the food service industry to provide some reliable income on a steady timeline. I am an adjunct instructor at my local community college, and if you break it down to an hourly rate, I probably make a similar wage at my fast food job (because of the fact that I did not have the money to finish my degrees). And I have freelance writing and editing jobs and a mini author’s assistant job.

And I’m always on the look out for more. Applied for another this morning.

I started my career in public relations, and ended up in print journalism, which led to a long career of lay-offs as newspapers died. I worked in non-profit communications and development, where I learned a massive amount of useful skills like grant writing but also experienced a ridiculous amount of toxic managerial behavior. Some people work in the non-profit sector because they want to make the world a better place, but at the same time, many of those people have either childhood trauma and/or personal insecurities that create some challenging environments in an already difficult field.

I mention all of this because I have experience with unemployment. I have experience with being the single mom with maybe enough resources to survive a month. I was a single mom raising a teenager who lost her job during the pandemic and did not find out if she qualified for unemployment until the weekend after she accepted a new job. I was unemployed for four months and had opened my home to one of my daughter’s friends who didn’t feel safe in her own home.

I applied for public assistance because I was volunteering at a non-profit that provides services for people exiting human trafficking situations and my “boss” suggested it. Because I had no income and I had an official dependent, I received more than $700/month in food stamps. And Medicaid. Which was a great help. Even though I only received food stamps for four months, I rationed them so they lasted almost a year.

I had accepted a job in the warehouse at Stitch Fix. I loved that job, and the company, but after three years they decided to close our warehouse. After three years at a wage where my take-home pay was the same as what I had made as the development manager for a small non-profit with a two-million-dollar annual budget (thanks to the fact that Stitch Fix offered their employees free medical benefits), I found myself laid off again.

And when my unemployment ran out, I once again applied for food stamps. I had gone on multiple interviews, built up my small business, but still struggled with the cost of my medical care– my estranged husband put me on his benefits but my medicine was $50-$100 a month and all my doctor’s appointments I had to pay out of pocket because of the high deductible. So I really hoped I would qualify for Medicaid again. And I did.

I also qualified for $525 in food stamps.

Around this same time, Trump got re-elected and the cheap refrigerator I bought started freezing the food in the refrigerator and not freezing the food in the freezer. But I couldn’t afford a new fridge– and I still can’t– so we started buying only what we could eat in a few days, or foods that could safely thaw and refreeze.

Lettuce is not one of them, if you were curious.

The point of all this is to ask: Regardless of how you feel about who uses food stamps or how the government distributes them or whether or not people try hard enough or work hard enough, why is no one asking why we have a system where 1-in-eight Americans qualifies for food stamps?

I have seen and heard so many things about the system, and I have known people who work in the branches of government that distribute these types of assistance and they are all people who want to help. I have met people afraid to work because they might lose assistance, and I have seen people who need the help lose it because they made too much money. (And, like me, it’s usually people who need medical care.)

I have about $2,300 left on my deductible this year, and I have spent almost an equal amount if you read my EOBs from the insurance company. I’m losing my hearing in one ear and I need a hearing test and a visit with the audiologist. The muscles in my one leg have been spasming 24-hours-a-day for almost a year now and I just blamed it on my cerebral palsy but my neurologist has concerns that previously noted damage to my spine (from all these years of walking crooked) may have caused nerve damage in my lower back. And my one finger has been doing crazy things for about a year.

That’s probably at least $6,000 worth of tests. Do I just try to schedule it all before the end of the year and finance the $2,000+ remaining of the deductible on a credit card? Or Able Pay? or do I wait until I am better off financially?

Back to the deep freezer. A friend of the family was hoping to get a decade-plus year old freezer out of his house. We took it. We took all the stuff from our cheap refrigerator that needed better freezer conditions and piled it in. And I thought– when Trump was elected an I was worried about the future of food stamps, I didn’t have a freezer to fill. I did however invest in every non-perishable food item I could tolerate.

Dried Beans. Plain-old Rice. Canned Fruit. Canned Vegs. Nutritional Yeast. Some condiments. Canned Tuna. Spam. Canned Chicken.

My childhood traumas leave me to ruminate frequently about food scarcity, financial security and general stability. I will probably always behave as if every trip to the grocery store is the last one I can afford. And I have done my grocery shopping at the Dollar Tree and the Grocery Outlet because I only had $20 left to feed us for the week.

The Office of Vocational Rehab considers me the most severely tier of worker, whereas the federal government says I do not qualify for disability because I work so much and at so many jobs. But the federal government doesn’t take into consideration that I have to work that hard to make ends meet. And I don’t always succeed and I often hurt myself doing it. And I just work past it.

But how do you determine an equitable way to decide who deserves help? And I ask a third time: Why does 1-in-eight Americans receive food stamps? What is wrong with our society if 1-in-eight people cannot afford to feed themselves according to the criteria the government sets forth?

Food for thought.