Invisible: At the intersection of disability and childhood trauma

Author’s Note: This is the next in a series I tend to run indefinitely on my quest to understand my mind, body and disability and how they interact as I age.

Also: This post is merely me pondering “out loud” and based on my experience. I might be completely wrong with some of my ideas. That is why I consider this a quest and not something I can answer with a quick internet search or “Hey, Siri” request.

Finally, please understand that I am hesitate to discuss this topic as I don’t want my family members to be hurt or feel responsible. Especially my parents. My parents have some wonderful qualities and their flaws because they are, after all, human beings. My parents experienced their own hardships and traumas and they have both dealt with issues with their own parents, alcoholism, etc. Plus, my childhood encompassed much of the 1980s and they were young adults in the seventies. The world, as they say, was different.

As I have mentioned in early posts, disabled children of my generation and the one prior were the first to escape institutionalization or being kept hidden away at home.

Many parents of disabled children (like Marie Killilea of the Karen books) focused on raising their children to master independence and to “pass” as normal when possible. This can lead to a desire to not call attention to oneself and in many cases avoiding (instead of attempting) activities where our difficulties become obvious.

Instead of talking about our ailment(s), we try to fit in and not be a burden. We want to seem worthy of our place in a society where if the conversation turns to eugenics, we’ll, we’d be the first people edited out of existence.

But add childhood trauma to this mix and I wonder, do disabled people with this type of trauma exponentially feel more of a need to be invisible?

Mommy and Daddy have trouble getting along and sometimes hit each other when Daddy gets home from the bar— I don’t want to be another problem for them.

Am I a victim of sexual misconduct because I was a good kid who would listen to her elders or because I was already broken?

No one wants to see me cry. They get upset when I fall down and cry. Mommy teaches me to laugh when I fall. Does this cheapen the legitimacy of the pain, the bumps and bruises.

None of my childhood trauma happened because I have a disability, but it’s another truth no one wants to talk about.

All good thoughts to ponder.

Progression: A Discussion of Finding the Resources to Grow

I may have said this before, but even if I have it’s a message that can be said again: I am blessed to have a talented and caring medical team. In addition to this team, I have also been harvesting resources for my physical and mental help.

I am recording this week’s journey so others might consider different ways to find their own resources.

On Monday, the teenager resumed therapy with a new therapist who attended Moravian College at the same time I did and is loosely a friend of my traveling companion M.

I asked if she was comfortable treating my daughter, because we have circulated in similar arenas in the past and my 17-year-old daughter struggles to connect with therapists who work with teens and is too young for a therapist who treats adults.

From what I knew of her personality from the few interactions we’ve had over the years and the information on her web site my gut said she would be a good fit for the teen.

And in my teen’s eyes, I was right.

My daughter is far from a troubled teen, but she has two parents with disabilities, a mother with trauma in her background and an extended family history of addiction.

Her strong empathy and witchy powers can make her experience of the world intense. (Speaking of which— I gave her my tarot cards on her birthday and she cried. I knew she would understand the significance of the gesture but I didn’t expect her to get so overwhelmed she cried.)

On Monday and Tuesday, my work performance wouldn’t crack 88%. I was frustrated and in pain and just moving slowly. After mapping my pain patterns for years, I can say that my back pain is worst when I ovulate and when I menstruate.

Wednesday was, as mentioned in other posts, the teenager’s 17th birthday. I had a tele-appointment with my therapist of about 12 years. Coincidentally I discovered his birthday is the same as my daughter’s. That’s just another reason we get along.

It’s fun to have a professional in your life for a long time like this because I get to see his practice grow and develop, sometimes in parallel to my own life.

I recently took the ACE Childhood Trauma test, which gave me a different outlook on some of my experiences. My parents did the best they could, but they had their flaws and their own battles to fight. So between their own struggles and life events they couldn’t control, stuff happened.

I can’t explain why it’s time to face some of this now, but that’s the way things go sometimes. We all come to certain aspects of self awareness in our own time.

On Thursday, I visited my beloved chiropractor, Nicole Jensen at Back in Line, who leveled things out, told me I was stressed and talked with me about different physical therapy stretches I need to do to fight the pain. We both agree that the pattern of pain increases on those certain days in my menstrual cycle.

I came home and ate cake and ice cream for breakfast. Not the best decision as I have been 20 lbs overweight for a year.

I suddenly remembered that Stitch Fix offers employees access to the Ginger Mental Health app. So I made an appointment for an initial consultation for Friday.

My hope was to use Ginger’s coaching to set goals and recreate/spur my discipline and good habits regarding food and exercise. For instance, I haven’t lifted a barbell in a year. I miss strength training. I still think I could be an excellent body builder.

My Ginger coach is Kathryn, who has a master’s degree in social work. Our session, completely done over text, seemed to be two sessions in one.

The first hour, she asked basic questions about me. The second hour we set up a plan of the topics we’d like to address. This week we will start making and implementing goals. It doesn’t always feel like talking to a human, though the occasional grammar or spelling error reassures me that it is a person on the other end.

Some of her thoughts include: “Sounds like a great idea! So in your case, a plan I might suggest would be to start by addressing your feelings of stress, [being] overwhelm[ed], and lack of motivation by incorporating mindfulness into your daily routine, which can help bring some relief from challenging emotions and help you see more clearly how your thoughts and emotions are impacting your behaviors so that you can feel more grounded, intentional, and comfortable being yourself. This can also include exercises centered around relaxation techniques, positive distractions, mindful awareness, developing awareness of triggers (when feeling stressed and/or overwhelmed, taking time to notice what the root cause is and look for a pattern), pattern recognition, scheduling and time management, and identifying and building on your current strengths and resources. We can also discuss accountability/working with providers (i.e. therapist and coach) and explore sleep/exercise/diet as needed.”

A lot of that feels copied and pasted, but it’s okay in my opinion. Sometimes just having someone help you pick a direction or even commit to a new direction can be the change you need.

Also on Friday, our dog F. Bean Barker got spayed at Canyon River Run, a vet we really love.

On Friday night, I learned a new work center at the Stitch Fix Bizzy Hizzy— style carding. My colleagues cheered me on in learning this new role and I very much enjoyed it, even when my computer monitor broke and I had to use a computer on another line and lean way over to grab my boxes.

Basically, the associates who “style card,” grab all the completed fixes that come off the QC line and use the packing slip to print a style card that includes a personal note from the stylist and lists each piece in the fix and offers examples of how it can be worn.

Working with anywhere from 6-8 fixes at a time, the “style carder” folds the packing slip and style card and places them into an envelope before returning them to the box.

A quick check that the box is correctly wrapped and the style carder lines up the boxes and shoots them down the table onto a metal conveyer line operated by sensors. This takes the boxes to “OB1” or the outbound/shipping department which inserts the return envelope, tapes the box shut and prepares the boxes for mail pickup.

The pickers assemble 920 items a shift, which breaks down to 184 fixes. Each QC associate folds and packages 130 fixes a shift, each style card associate aims for 900 fixes a shift, and the Bizzy Hizzy itself ships about 6,000 fixes a day.

During this time, our tasks are fairly simple, automated and monotonous so we are allowed to listen to podcasts or music. I’ve used the time to explore a lot of topics via podcasts on Spotify.

Spotify is still a new platform for me and it’s slowly gaining exclusive proprietary rights to a lot of the podcasts I listen to. I heard on several news broadcasts that Spotify paid 60 million for Alex Cooper’s “Call her Daddy” where she talks about sex often with an emphasis on blow jobs.

I listen to her because she has some funny stories of the ridiculous escapades she has had: dating a professional athlete, offering blow jobs as a way to sneak into sporting events, etc. But she also sometimes interviews people— like a retired Playboy bunny who left the Mansion and points out the realities of such sexual exploitation. Alex can be really insightful but she also can misuse her vocal range to try and make the podcast more interesting to listen to and that hurts me ears.

In addition to Kristen Bell, Dax Shepherd, Mayim Bialik, and Conan O’Brien (and in addition to the news and fashion), I searched for cerebral palsy podcasts. From TheMighty.com, I learned that the name “cerebral palsy” is an umbrella term for several brain-related disorders. And I don’t really know anything about which CP I have.

I learned CP can interfere with the neurotransmitter GABA which is why our muscles and our brains don’t communicate effectively. I learned that muscles that don’t get used correctly and don’t get the right messages can stiffen and become spastic. This causes pain and lack of control.

The two main classification differences I have heard are hemiplegia and quadriplegia which you may recognize from the words paraplegic and quadriplegic. These terms explain the parts of the brain/body affected. I would assume I have mild hemiplegic CP, as I think it only affects my lower body. But sometimes I think I see it in my hands so I don’t know. And I think I am low spasticity as I seem to have fairly good muscle control for someone with this disorder.

But I don’t know. So I did what I like to do, on Saturday, I called Nan. If you don’t know Nan from this blog, she is often my partner in crime. She has been blind since birth. Like me, we were raised in able-bodied families and never knew life any other way.

Nan is older than I and, despite her disability, has lived independently for most of her life. She attended college. She married. She has a hobby writing career and attends poetry open mics. She was a teenager when NASA put a man on the moon, but despite having never seen the moon, she has been fascinated and following the advances of NASA ever since.

Nan is closer to my aunt’s generation than mine. My aunt has what would now be referred to as developmental delay, but what was called the now insensitive term “mental retardation” in her day. In school, she didn’t learn what the other kids learned. She had basic reading skills and could add and subtract but never learned to multiply or divide. I know because we used to play school, except I really taught her things.

My aunt, then a few years later Nan, and even a few more years later me, we were all part of 20th centuries advances. Medicine had found ways to help us survive, but technology and society had not discovered ways to help us thrive.

None of us have thick medical files that detail the specifics of what is wrong with us. You were thrown into the mainstream to sink or swim. And if you couldn’t swim, you were institutionalized or kept home. Therefore, families didn’t talk about disability as much as they pushed functionality— they urged us to act as normal as possible and pretend the differences about us were not even noticeable.

I mentioned some of this to my primary care physician when I transferred to his practice more than a decade ago (some friends and my therapist recommended him). At that time he guided me to specialists to explain what is wrong with my specific body, but I am realizing now that he might not know that I know nothing about what my disorder is.

So, also on Saturday, I emailed my doctor. I asked him to help me find someone who can talk to me about cerebral palsy. I know children with the disability in today’s world work with a pediatric neurologist.

And it hasn’t all been work and reflection. My daughter and I got mani/pedis for her birthday/upcoming trip to Cape May. It was our last appointment with “Nails by Bethy” at Hyperion Salon. Beth has a new full time career that should offer her more stability and room for advancement.

We met Beth 12 years ago on the same date she ended her nail career. And the teenager and I got to be her final clients.

And yesterday I tried the new strawberry popping bubbles at Dunkin. I had them in an iced matcha latte. I must say, this is the best matcha latte I ever had at Dunkin but the bubbles had such an artificial strawberry flavor it tasted like someone poured chunks of jello in my drink.

If Dunkin’ wants to capitalize on the boba trend they should stick to normal tapioca.

What can I say? It’s real life.

Friday was a good day.

I (and teenager #1) started the day receiving our newest foster cat, Touch of Grey.

So, here’s the thing about cats. Dogs are lovable, forgiving and devoted. They want acceptance, love, and structure. Cats don’t forgive. They are more aloof and nervous and neurotic.

The same cat— example: Touch of Grey— will react strongly in different environments and will remember whatever you do to “wrong” them. She is approximately four years old, FURR had her spayed. She is a newer addition, an owner surrender because of a move.

She has had a couple other placements. She seems happy here. Cats really a lot on body language to communicate. Her signals are very strong. If you heed those warnings, life is good.

I haven’t seen her bitchy side yet, but others at the rescue have. I don’t relish the day I have to crate her.

But this is her a few minutes after we spent our first time together: Play with Grey

At 10:30 I had my regular chiropractor appointment at Back in Line Wellness Center with Dr. Nicole Jensen. For the first time in ages, I was pretty much level and because I haven’t been dealing with constant pain she was able to stretch out my hips more than ever before.

And Thursday night, I reached a new career personal best at the Stitch Fix Bizzy Hizzy. I QC’ed 116 fixes.

When I arrived at work Friday night, I felt powerful and amazing. I looked forward to knocking out the shift and getting my nails done in the morning. My favorite nurse, my favorite QC/Style Card peer and I started talking about places open late at night, Waffle House, and potentially going out one night after work. Am I making new friends?

Even if nothing else comes from it, it felt good to be included in the discussion as a newer employee and in the Covid age.

Maybe I got a little cocky with the universe, because within a few minutes at my QC station, I moved wrong and post my chiropractic adjustment my body just said “nope.” I spent the rest of the night in pain. At about 4-5.

There’s someone at work who physically reminds me of a friend whom I’ve not seen in a while. That was bothering me. Not that the person can control their appearance.

And we had these new stickers that made the night chaotic.

To counter some of the chaos, the leaders hosted a “power hour.” This meant the different QC valleys would compete to see who could get the most work done in the hour. They blasted 80s music throughout the warehouse.

I knew every word to every song. And I didn’t even remember the songs. Isn’t that funny the way that happens? A lot of the music brought me back to childhood, and to middle school, and different events of the past. The emotional fugue dulled my senses.

The music included the song Elvira by The Oak Ridge Boys. That song, and I am sharing this video from a Grammy performance in 1982 (Elvira), used to be a favorite on the jukebox in every bar my parents used to frequent. I think the experience tapped my feelings of helplessness.

Between the pain and the new stickers, I only QC’ed 99 fixes. Though I did speed up as the night went on.

But then I got home— cuddled the dog, laughed at some comedy, made Mac and cheese. All is good.

Lessons in Mindful Self Compassion, part one

I push myself—hard. I can be relentless and tenacious.

It can come in the form of trying to get over that 90% hump in metrics at the Stitch Fix Bizzy Hizzy warehouse. (I picked 495 items on in my 5.5 hour shift tonight.)

It can come in my past fitness challenges (but apparently not in my current battle with stress eating).

It can come with my personal projects and grades and overachiever attitude when it comes to research.

I can go on and on.

When I saw that my friend Fausta and her co-facilitator Vira were hosting a free online seminar on Mindful Self-Compassion, I was very excited to sign up. The seminar was 9 a.m. to 3 p.m. which meant getting up early and potentially rushing out the door at 3 to get to work for my 3:30 shift but I had to do it.

I wasn’t even sure exactly what Mindful Self-Compassion was but based on Fausta’s enthusiasm for it, an educated guess that it involved some meditation, and with Fausta’s background in therapy and being a holistic life coach, I had to do it.

My therapist has been telling me for years to be gentle to myself and this Mindful Self-Compassion stuff sounded perfect for that.

I even requested a late start at work. Now me being me, that made me anxious. Should I start at 4? I might have to eat something. 5? (I never considered 4:30.) What’s the point of starting at 5 p.m. if break is at 5:30? I opted for 6. And it was approved!

And then this week happened—let’s just say teens and animals and an incident with the dog and the hammock and the new fosters and my body hurting and the hormones of a 40-something woman… I didn’t make it to work the night before the seminar. And do you know what? My supervisor told me to “take care of myself.” I felt like I was being treated like a person.

That time— that sick day on Wednesday night— gave me the space to rest, clear my head, and focus on the seminar.

And it was so worth it.

I’m responding to it now from memory and will gladly talk more about specific exercises and lessons if anyone desires. I bet we can ask Fausta for her input too. And my apologies to Fausta if I misrepresent any of the concepts as it is 1:30 a.m. and I am not looking at my notes.

I learned:

  • That Mindful Self-Compassion is a way to process emotions that combines meditation exercises and rational analysis to allow yourself to feel the feelings but also try to heal the feelings.
  • A big part of the practice is to accept/embrace your own imperfections.
  • We explored a Japanese concept of life’s purpose.
  • We examined physiological responses to different emotions.
  • We designed a personalized loving-kindness metta meditation.
  • We developed our individualized core values.
  • We grounded ourselves via a soles of the feet meditation. I’m using the word grounding since I’m a witch and that is totally what it felt like to me.
  • Meditation reminds me of the prayer practice of centering— and I had forgotten how good I was at that.

I’ll review my notes and write more soon. In the meantime…

My previous post on the seminar is here: https://angelackerman.com/2021/04/02/ironing-out-the-anxieties/

Do I have high blood pressure?

As we age, it starts to feel like we all gain a plethora of medical conditions and for most of us they are connected.

Maybe that damage you did to your knees playing football impacts you a whole lot more than you ever imagined it would when you were 20.

Or, as my dad—now approaching 72—says,

“If I’d known I was going to live this long I would have taken better care of myself.”

(my dad)

I know I’m at a stressful point of life. Almost one year ago I left my job of almost ten years, I job where I was surrounded by dozens of other people everyday and working intimately with a close team. Some of them became good friends but there’s a phenomenon when you work retail. Those relationships fade once you’re “out.” And sure, I have friends outside of my former employer but some of these colleagues spent more time with me than my family.

Some close colleagues have gone on to better things. One I was very close to died of cancer. Another moved to Florida. Some just get harder to stay in touch with.

So that’s a change.

My husband moved out eight months ago. Eight months.

I got a promotion at my new job in late August, that’s six months ago. And I have no experience in my new job. That’s daunting.

When I went for my annual physical in late January, my physician was concerned about my blood pressure at 142/85. He told me to keep an eye on it and if it doesn’t go down to call him.

I called him. I’m working with a therapist to combat the stress. I mentioned to him that stress, to me, was different from anxiety. Anxiety comes when you are worried about the things that might happen. Stress is dealing with what is happening.

“What an interesting distinction,” he replied.

I am trying to do better about the gym, my diet, my rest and my frame of mind. I go see the nurse practitioner tomorrow.

My mother has been on 5 mg of the same blood pressure medicine for about 20 years.

And I know 142/85 is not really high, but I’ve learned from my chiropractor that high blood pressure will effect my balance issues from my cerebral palsy.

The stress dreams happen every night. The worst one— yet the one I feel has more meaning that the others—was “The Jar.”

I consider it a variation of the classic “buried alive” dream. I was sitting in a giant jar of nothing but black void. An ominous voice told me that the jar was a waiting room to house those people about to die, very temporarily as they passed on.

But I didn’t belong there as I wasn’t scheduled to die for another 40 years. But no one left the jar once you entered it. I was cursed to sit there in the empty, dark jar for 40 years.

Yes, I woke to my dark room fearful that I really was in a jar. As far as nightmares go, I’ve had much worse.

But it hangs with me. As important.

Maybe I need to embrace nothingness more.

Maybe I have a lot of life left to live and I need to be sure I live it.

Maybe I will die at 85.

We shall see.