I Have Been Sick All My Life

A white woman on a gurney just outside the surgery recovery room. A white physician and a nurse are on either side of the stretcher, either talking with her or pushing the gurney. The photograph was taken at lower than eye level.

I am immunocompromised: Please Consider Me
This has been a really difficult and scary year for me.
And for so many of my friends and fellow disabled community members.
We have heard over and over that our lives don’t matter.
And now that there is a vaccine - the world wants to leave us behind.
We may be slightly more protected once vaccinated
However, we cannot let our collective guards down
I cannot suddenly say ‘yes’ to all these magic gatherings that people are planning
Not until there’s herd immunity
And even then, kidney disease does not have good Covid outcomes
And I am so angry
I feel scared

I am constantly remembering the fact that 
Eugenics actually began in America - the United States
The fact that Alexander Graham Bell wanted to eradicate the Deaf community
In the 1800s my people were systematically deprived of their language
And that is something that continues to TODAY
So excuse me if I am angry
If this year has made me so incredibly scared
That my partner has been carefully working from home all year
That they have done all the medication runs - which we couldn’t get delivered
And I have pretty much stayed inside
And I persist in wearing a mask outside even now
Because I cannot trust anyone
I have so many friends
Who have personal experience with devastating illness
And should know better
If you could reduce your risk of dying - as a well person - why wouldn’t you
Why must you deny the many many years of research
(Which my best friend does so I know how long it has gone on and how serious it is)

Why must you tell me that my life and the lives of others at high risk 
Do NOT matter to you?
And the worst part is
I already felt like my worth was nonexistent
I already struggled with suicidal ideation
I already believed that there was no space for me in the world
WHY must you confirm my fears?
And tell me that my life doesn’t matter to you?
Please please consider me and so many others like me
And please do your part to protect our lives.

This piece was written thanks to a monthly theme from Illuminate, a writing community from The Kindred Voice.

Read more pieces on VULNERABILITY from other Illuminate members:

Being Vulnerable With My Body by Hannah Kewley

Quitting Cold Turkey by Mia Sutton

To The Women Working in Male-Dominated Fields by Christi Jeane

Anxiety Hangover by Christine Carpenter

Butterfly Wings by Megan McCoy Dellecese

with love, eunice by Eunice Brownlee

A World of Access

(image description: a dark photo of a salt and pepper schnauzer on a blacktop road with a yellow line, a blonde wearing a blue coat is bent down with her hand on his head petting him).

I won’t say I’m an activist, I think it’s just caring
We don’t become activists because we want to, but because we have to
Activism is the only way we can even access the world

My first memory of activism is probably not my first actual instance
My brain protects me by blocking out huge portions of my childhood
I wanted to be in honors English classes
The TOD (teacher of the deaf) didn’t want to support me
My parents and I pushed
I said I would absolutely prove I could do it
We got access to the class – but not interpreters – and I did succeed

I learned sign language by having conversations
Slowly Haltingly Then my fingers flew!
And before anyone imagined I was signing more than talking
It made everything possible
Even with interpreters only in one or two classes – my grades improved

When I did have interpreters, I remember stares
Oh the deaf girl
I remember an interpreter banging the desk when I was writing
‘Look at me!’
I remember being afraid of them
I kept fighting that fear because I needed the language

Gradually the fear got worse
Fear of new places
Fear of yelling
Loud noises Rainstorms Missing the information Death

It was always there, shadow nipping at my heels

Until one day a grey dog walked across the blacktop towards me
It took us time, many many moments
Hugs, Meals, Snuggles
And all of a sudden he was chasing away the fears
He was telling me about the noises and information before I missed it
(Except for what people were saying – still missed that)
He made all the difference in the world


Yesterday I participated in Northern Colorado’s Annual Jingle Bell Run – the Virtual edition of 2020.

This weekend, Arthritis Foundation Jingle Bell Runners across the country have been coming together to attempt to break the Guinness World Records® title for the largest remote 5k in 24 hours.  To be included in the world record attempt, your virtual “run” must be logged on the RunGo app between 12:00 p.m. EST on Saturday, December 12th and 12:00 p.m. EST on Sunday, December 13th

I started running/walking the Jingle Bell Run back in elementary school – though truly I only remember back to the walk I did in Middle School. I wasn’t really into running until college – so these ‘runs’ were always walks. They were also usually at the Oval on the campus of Colorado State University. I miss running in the snow on the Oval!

image description: a redhead wearing a blue jacket and a purple mask stands in front of the railroad transfer bridge in the water at Canton Waterfront Park.

Yesterday I walked down to the waterfront – Canton Waterfront Park – specifically and then back. There were TONS of people out in Baltimore yesterday as the weather was nice and in the 60s. I’m assuming it’s only worse today. Canton is particularly bad for lack of social distancing and mask wearing compliance.

Once I stopped at the waterfront, I immediately went northwards on a side street and made a point to avoid the main thoroughfares where lots of unmasked people were congregating. Getting outside makes a huge difference in my mental health but with my chronic illness I really want to avoid any exposure to the virus. My illness is on the list of particularly high risk – and outcomes of people who have it and get Covid are really bad right now so I am doing everything in my power to stay safe.

completed run image description: a redhead with a braid and a blue coat stands in front of a faux evergreen and ribbon wrapped light post on the street.

Dreams of Running

image description: Jennifer running across the finish line at a triathlon, she wears knee length leggings, a blue fleece jacket, and white sneakers.

I spent a lot of my young adulthood running. Running away from the terrors in my head, both literally and figuratively. I started training for triathlons in a practical sense during my senior year of college. I always struggled with sleep and running, or swimming in particular, was the only way I could sleep – I had to wear out my body so my mind would quiet enough.

I graduated into a recession – many of us in the mid 00s did. I had spent my whole life being told that if I worked hard, graduated from high school, went to college, and graduated with the best grades I could get, that I would be able to find a job that was reliable and steady and would overlook my disabilities. That was not the case.

So I ran. I ran to outrun the voice in my head that told me I was an absolute failure. That all my hard work was meaningless. I ran to get away from the fact that I hated myself for all of that – for the failure, for the disabilities that I could mostly hide but would never be able to ignore or forget.

When I finally got a ‘real world’ job, it was one of those places where I felt like a replaceable cog in the machine. I ran there too – I would take my lunch break, lace up my sneakers, and run around the lake just down the street from our building. I would cry as I ran because I was constantly feeling left out, not understanding or being included in office gossip even though our cubes all looked out to each other and I could see everyone talking and laughing without me.

I worked hard at that job. I loved working in filing and I loved organizing – I also loved the fact that it didn’t force me to sit on my butt all day. I coped with not being able to hear co workers by walking over to their desks to ask questions and get directions – rather than phoning them, which everyone else did. I knew I needed to lipread them to be able to follow so this was my way of getting my needs met without outing myself as a disabled person.

I woke up really early most days and I would either walk out my front door and run down the street – or I would hop in my car and jump on a treadmill. If I was at the gym and on the treadmill, I would lift afterwards. Every other day I would absolutely go swim laps before my brain woke up enough to complain to me about the cold water.

I don’t know how I managed to keep going like that either, when I finally quit that job and moved away from my home state I wasn’t running to get away as much. I was running because it made me feel good, because it was a way to get to know my surroundings, and it was a way to build a community in a new place.

Because things changed – I started processing all the reasons behind my running/workout obsession. It was a good thing in many ways, but it also brought to light a lot of really difficult internal processes. It’s something I am still working out to this day. Maybe you can relate.

What things have you used to cope or how have you run away from things in your life? Comment below!

❤ Jennifer

Shop Small Saturday

Black Deaf Businesses

Erry B Shop – https://shop.spreadshirt.com/erryb/

Deafinitely Dope – https://deafinitelydope.org/Store/

Monroe Pedagogy – https://www.monroepedagogy.com/shop

Free Deaf Ricardo Harris – https://www.freedeafricoharris.com/donate

National Black Deaf Advocates – https://www.nbda.org

Deaf Creators/Businesses

Deaf Cartoonist – https://mattdaigle.square.site

Wood Stove Studios – https://www.etsy.com/shop/WoodstoveStudios

Deaf Family Matters – https://booksy.com/en-us/478174_deaf-family-matters_other_18229_chicago?do=invite&_branch_match_id=805193903250763840

Language Priority – https://changing-the-narrative-language-first.myshopify.com

Sara Novic – http://www.sara-novic.com

Mozzeria – https://mozzeria.com

Crepe Crazy Baltimore – https://www.crepecrazy.com

Indigenous Creators/Collaborators

Oaxacan Black Clay & Kiona – https://clayimports.com/oaxaca-black-clay-mug/

Baddie_Beadwork – https://www.instagram.com/baddie_beadwork/

Nativeglam.Beading – https://www.instagram.com/nativeglam.beading/

Teal Fawn Designs – https://www.etsy.com/ca/shop/TealFawnDesigns

J Shine Designs – https://www.jshinedesigns.ca

A Decolonizing Daughter – https://decolonizingdaughters.ca

Whispering Winds Store – https://www.whisperingwindsshop.com

Meal Prep Kits/Plans

In Baltimore

Jimmy’s Famous Meals – https://jimmysfamousmeals.com

True Meal Prep – https://truemealprep.localfresh.store/order


Clean Simple Eats (not Local – I like their meal plan books, but I don’t follow fitness/nutrition) – https://cleansimpleeats.com/collections/

Baltimore Shops/Reads

Vintage Views Bar – https://vintage-views-bar.myshopify.com

Shop Arrow Clothing – https://shoparrowclothing.com

Hashtag Hannah – https://shophashtaghannah.com

Greedy Reads – https://greedyreads.com

Rouge Petal Co – https://roguepetalco.com

Rachel Mulherin – https://rachelmulherin.com

Spices in my DNA – https://www.spicesinmydna.com/category/cookbook/

Budz & Blooms – https://www.instagram.com/budzandblooms/

we’re all feeling this, amiright?

Amy Scripts – https://www.amyscripts.com

Panemorfi Photography –https://www.instagram.com/panemorfiphotography/

Black Shops/Creators

Bmoore Creations – https://bmoorecreations.com

Briejai’s Bites & Delights – https://www.bbndcheesecake.org

Cocktail Crafty – https://www.cocktailcrafty.com/link-in-bio

Lauren Leavell Fitness – https://www.laurenleavellfitness.com/links

Romance By Myoshi – https://www.facebook.com/groups/325786675008535/?ref=share

Pandora’s Box Boutique – https://pandorasboxboutique.com

Water For Chocolate – https://www.waterforchocolate.com

Melmore Events – https://melmor-events.com

Revive Health Life – https://revivehealth.life

Apothecary Juice Bar – https://www.apothecaryjuicebar.com

Megapixels Media – https://megapixelsmedia.com/

Scotch & Tea – https://scotchandtea.design

Dear Grown Ass Women Creators

Founder – Cyndie Spiegel – https://www.cyndiespiegel.com/

Dear Grown Ass Women – https://www.deargrownasswomen.com

Oralism and Alexander Graham Bell

Thanks to the Memphis Oral school article I’m learning lots and lots of hearing people have no idea about the prevalence of AG Bell’s ideas and how he was one of the strongest proponents of oralism in the United States – his theories are still evident in deaf education today. 

“Oralism” which was the pedagogical approach of suppressing sign language in favor of speaking & lipreading. Oral instruction existed in the U.S. as early as 1840, with establishment of Lexington School and Clarke School in 1867, oralism established deep roots in the nation. Bell applied his study of eugenics to his goal of preventing the creation of a deaf race and presented his paper Memoir Upon the Formation of a Deaf Variety of the Human Race to the National Academy of Sciences in 1883. 

In this paper, he proposed to reduce the number of deaf people by discouraging deaf people from marrying others who are also deaf or who have multiple deaf family members. He suggested presenting legislation to prevent this as well. AG Bell also advocated for speech reading and articulation training (oralism) and removed the use of deaf teachers and sign language from the classroom – this is something we see impacting the community today as a number of teachers of the deaf are not deaf themselves. 

These strategies for assimilation into the hearing society presented by Bell still impact all areas of early intervention for deaf children today – seeing as 90 to 95% of deaf children are born to hearing parents. And the first deaf person these people ever meet is their child. Also, the first person to tell them about their child and deafness is usually a doctor or a audiologist, or possibly an educator, all professions that still see deaf people in ways impacted by Bell and his ideas. 

I’m sure I could go on… but let’s just say that sign language is not often brought up first by these professionals and many parents do not learn sign language for their children in spite of ALL the people I see saying of course they would and how abusive that is. 

Finally, I am just a Deaf person. My degrees are in social studies and history with a legal bent. I am not an expert by any means. Just wanted to say that this is what it is. 

(Also, I have linked the article in my comments but TW for audism and ableism).

Memphis Oral School Article.

Peanut Marinade Recipe

Peanut Marinade

  • Servings: 6 chicken breasts
  • Difficulty: easy
  • Print

1/2 C Peanut Butter
1/2 C Peanut Oil
1/4 C White Wine Vinegar
3/4 C tamari (or soy sauce)
1/4 C fresh lemon juice
4 cloves garlic
8 cilantro sprigs (or 4 tsp dried)
2 tsp dried red pepper flakes
2 tsp fresh ginger

Combine all ingredients, mix well.
With 1/2 of mixture marinate chicken for 2 hours before cooking (baking or grilling)
Use remainder of marinade as sauce to mix with ramen or rice noodles.
Chop the chicken once it’s cooked, and add to your noodles – one breast per ramen packet or bunch of rice noodles.
Chop some peanuts – roasted – and sprinkle them over the top of your meal.

Family Recipe: Wassail

Happy holidays! Well, in preparation of the holiday party and New Year season, I have a little recipe for you all. I have seen feedback that many people don’t like getting a story before the recipe so I’m going to post the recipe straightaway. If you want to hear about Wassail – go read below the recipe for that.

image description: image of cranberry juice, apple cider, cinnamon sticks, an orange, and whole cloves all assembled on a blue mat.


  • Servings: 12
  • Difficulty: easy
  • Print

2 Quarts apple juice or cider
1 pint cranberry juice
2 sticks cinnamon
1 tsp whole allspice
1 whole small orange, studded with whole cloves
1 cup rum (optional)
1 tsp aromatic bitters (optional)

Put all ingredients in crock pot. Cover and cook on high for 1 hour, then on low for 4 to 8 hours.
Serve warm from crockpot..

image description: a white ceramic mug with cider in it and an orange slice on the rim, then two orange slices, a cinnamon stick, and whole cloves arranged on a blue mat.

Wassail is hot mulled cider – many different formulations exist over different cultures – my mother’s family is part British so it’s possible this is an old family tradition. I was always under the impression that most of my family’s traditions derived from their time spent stationed on the Army base in Germany though.

The word, according to Wiki, is derived from the Medieval Christmastide tradition of wassailing – or an English drinking ritual to guarantee a good harvest in the new year.

Wassail is a drink that we have made every single holiday as far as I can remember. Thanksgiving – when we celebrated it – included putting the Wassail on early in the morning and beginning to drink it by noon. Also, I personally have never had the alcoholic version, so this was a very innocent tradition from my childhood.

When I had my first holiday party in our home in Atlanta, I made wassail as one of the things I had – it was one of the biggest endeavors I ever undertook – but it was so much fun! I haven’t managed to replicate it in Baltimore mostly because of the size of our row home.

Hopefully you enjoy this recipe too! Let me know what you think.

❤ J

Holiday Gift Guide: Dog Mom Edition

This holiday season is challenging for me, now that we only have two dogs and my longtime service dog has gone over the rainbow bridge. But for some reason, concentrating on the pet dog and service dog in training we do have is helpful to distract me and make life a little brighter.

There isn’t much more fun for me than giving my service dog in training pup new toys and sometimes finding new (or replacing old) devices that make our lives with pets easier.

A dark miniature schnauzer curls up against a human’s legs in the foreground and a lighter schnauzer is curled up against the end of the sofa in the background.
image description: gift guide: dog mom gifts. images include a spot bot, a car belt harness, an automatic ball throwing device, hooves and antlers to chew, dog treats, and a stuffed dinosaur.
  1. SpotBot Pet Handsfree Spot & Stain Cleaner – We have replaced this a few times. Not by any fault of the spot bot itself, more because of inattentive cleaning patterns. It works GREAT. Got our carpets in our old rental that were off white when we moved in back to true white when we moved out in SPITE of five years of pets and being right on the backdoor. – If you have ADD be aware that it needs to be immediately emptied and cleaned when it’s done cleaning the rugs otherwise it does tend to gunk up the gears.
  2. Dog Safety Vest Harness – We bought two of these for use in all car travel with our dogs. It keeps them safe and keeps me from spending all my time being worried about them falling off the seat.
  3. Automatic Ball Launcher – I do not have and have not used this, but it looks like it would be a really fun toy for both our toy-chase obsessed SDiT and his buddy the cat.
  4. Natural Cow Hooves for Dogs – We have these and have replenished them for the dogs every year or so. There are plenty to go around for the two of them and they last a long time.
  5. Zuke’s Mini Natural Soft Treats – Dog treats are a very individual sort of thing, but we have used these mini treats very successfully in training and the pups love them. The size makes it much easier to avoid overfeeding.
  6. Deer Antler Dog Chews – my older dogs never got into these antler chews but the SDiT loves them so he’ll probably get a pack in his stocking this year.
  7. Dino Dog Toy – This dinosaur dog toy has chew guard technology. It also has a squeaker – which is one of my dogs favorite things ever. We haven’t tried the chew guard technology yet, but I’ll report back!

What are your pet’s favorite things? Any toys we should look into?

❤ J

Holiday Gift Guide: Chronic Illness Edition

Knowing what to get for your friends who are disabled, or chronically ill is sometimes challenging – there are allergies to consider, many are poor, living in very small spaces, and often your best bet are things to help comfort – or checking their Amazon wishlists!

Here are a few things that I personally use and appreciate for comfort when I am dealing with pain flares, ongoing colds during the beginning of winter, and being stuck in the house because of illness.

  1. Weighted Blanket – This has been invaluable to me since the loss of my service dog. He used to provide a very direct weight to help me sleep, and this blanket does a fairly decent approximation. It has also anecdotally helped many other people both disabled and abled.
  2. Electric Blanket – I prefer the Serta and Sunbeam brands – and I especially love the reversible sherpa and fleece throw I have on the sofa right now.
  3. Kindle or E-Reader – I get so much mileage out of my Kindle, in general, but especially when I’m sick. Cold and flu season means I spend a lot of spare time inside in bed or on the sofa catching up on sci-fi reads. E-readers are especially good for disabled people because we can check out books from the library on them – you can change the formatting to larger or smaller letters to help with vision – and they are much lighter than chapter books or other tablet readers to hold for long periods of time.
  4. Car Adaptor Electric Blanket – This blanket is ideal for long car rides over the river and through the woods to grandmother’s house – or Aunt Janelle’s in my case – I love it because we have to keep the car colder for both my partner AND my service dog. This helps me regulate my own temperature and stay comfortable for long periods of sitting.
  5. Contour Orthopedic Cervical Pillow – This pillow has helped immensely with neck and back pain from a pinched nerve. Supposedly sleeping on our backs reduces pressure and compression to help with chronic conditions. It is also helpful if you have sinus problems – for example – I notice my partner snores if he’s not sleeping on his back, it’s particularly bad if he ends up on his stomach. We both have these kinds of pillows to support back sleeping.
  6. Bathrobe or other cute loungewear – I personally linked the bathrobe because I like that it goes well with my final dream gift, and it is nice to have something easy to throw on to answer the door when you spend all day on the sofa.
  7. Coleman Inflatable Hot Tub – This hot tub was a wishlist purchase. After spending a weekend at the hot springs in Colorado, we realized that a lot of ongoing pains we had were drastically reduced. So my partner started investigating how to go about getting a hot tub in a Baltimore row home — let’s just say that wasn’t a very inexpensive or easy endeavor. He finally came across the Coleman hot tubs and realized we could do it! We got the square one because we’re very particular about shape and aesthetic but the round ones are even cheaper! This is a GREAT family gift.

Let me know if there’s any particular disability mitigating gift you’ve thought of or given that you loved over the years. Thanks for reading!

❤ J