My Pain Made Me Multidimensional, by Valerie Ivy

A photo of a blonde woman standing in a field with her son. The woman has her back to the camera and is wearing a green dress.

My husband resents me.

He, (Charles), won’t admit it because only a “bad” person would resent their partner for being disabled. Charles is pretty good at knowing what CC, “Cutout Charles,” should feel. So while CC “definitively does not resent me,” he does think me a hypochondriac, as does Charles. I fear my son is heading there too.

Okay, I did use Dr. Google – just a smidge – because I’m still “infected,” despite finishing my antibiotic ration. But don’t worry; I realized I will die of cancer within 48 hours roughly six years ago. This is when exhaustion, pain, depression, brain fog, skin tenderness, anxiety, diarrhea and vomiting, (yes, usually at the same damn time) debilitating nerve pain and general all-over body annoyances, became my pain, no longer orphaned.

Because it is mine. It is not something I can share with Charles, or CC or my son, Royal, no more than they can share theirs with me. It’s one of the few constants in my life and I fear I may actually love it. Wow. Am I in love with my pain?

I breastfed my son for 14 months until he and I both were done. Weaning was easy, potty training was easy—my son is a very “easy” child in most respects. So many people made sure I knew this, usually through comparisons to their pants-poopers and nipple-demons. But Royal can be quite needy of his mother specifically. And I am his mother, but I am also a person who needs to sit in her own thoughts. I try my best to be present. No, that isn’t even true. I should be more present.

My pain restricts many of my desires and needs. When I do have the patience or focus, the selfish researcher in me wants to hide in the garage and fall down various rabbit holes, the latest being New Jersey and Pennsylvania’s abundance of teak midcentury-modern furniture. (You know teak cannot be currently harvested, right? I do. I know quite a bit about teak wood now actually.) There is so much information out there, but not enough for me to have my very own diagnosis.

For example: are my depression and anxiety secondary to my physical conditions, or are they the cause? Or is it really some sick circle-jerk where nearly everyone, except fatigue over there, is just trying to finish? I did notice, fights with Charles, (and with CC to an extent), mean stomach problems for several days. But also, there are times there is no noticeable trigger and I am just sick.

I know Charles dreads answering my 10 a.m. phone calls. I know because he waits until the. Very. Last. Ring. These are the ones where I’ve tried muscling through the morning with Royal, but call, needing my husband to leave work and “come home right now ” And once COVID-19 shut down Royal’s school, I was on the line at 10 a.m. a lot. I know CC makes Charles answer.

Just between you and me, even without my disabilities, I would make a terrible stay-at-home mom. My son needs chatter and noise. He needs outdoor activities and exercise and laughter and kids, other kids. I need too wander around inside my own head and enough connected minutes for the hike. So, I found him the absolute best school for his personality and interests. It’s a forest school, where an arboretum is his classroom and mud his medium. I shudder imagining our life without them and the scholarship (see?: research), as Royal is thriving with them.
At first, I got away with just saying “nature-based learning,” when family and friends raised eyebrows at me, a woman with little means and no job, pawning her child off during the week. Now, I offer no explanation. This is simultaneously liberating and like sounding an internal war drum. My own cut-out, VC, I suppose, would over-explain but therapy is teaching me better. Another bonus of Royal’s school is when he comes home, I am usually ready and waiting to receive him. I am here, present.

If I get my very own diagnosis, I also get my very own prognosis. Charles needs this more than I do: he is a fixer but he cannot fix me. I learned to keep my expectations low when it comes to doctor visits, labs and imaging. I wouldn’t go so far as to say I have “actualized” (what does that even mean, really?), but I have adopted my pain, absorbed and accepted it as part of me. Maybe that is what I meant by in love; I no longer fight it? Maybe it is more like Stockholm syndrome. Seriously though, I own my ailments so well, when I experience a new symptom, it is hard to stop myself from overexplaining the sensation to Charles. CC nods. Charles rolls his eyes.

Until my diagnosis falls from the sky, or manifests itself in list form or some other tangible way, Charles may continue doubting me, resenting me. I’ve grown fond of CC though and will miss him if he goes.

Life Is Not a Bowl of Cherries—It’s Empty

by Alicia Ann Torres

An image showing a quotation from Alicia Torres. It says, "So, how do a high-risk, almost deafblind mother and her potentially COVID-19-infected young daughter maintain social distance in a small one-bathroom bungalow? Prayer, high-powered hearing aids, clear communication, and respect,” and has a picture of Alicia Torres next to the quotation.

At the beginning of the COVID-19 pandemic, I received a phone call from my panicked brother. He said, “Get someone to help you go to the store and get food now. California is going to go on lockdown.” Bewildered and naive about the severity of the situation, I reminded my little brother that I shopped online.

Once California initiated the shelter-in-place order, it was virtually impossible to get a grocery delivery online. My screen was flooded with messages about unavailable delivery dates. I tried four different companies, but none of them came through. Empty shelves and panic-buying crowds push people with physical limitations further into isolation. Although Nextdoor.com, a free social-media site, allows neighbors to offer shopping services or run errands for high-risk people, I don’t feel comfortable using it. Living alone is something I don’t publicize for safety reasons. Moreover, my relationships with my neighbors are temporary, and I don’t feel right exchanging money with them right now.

Fortunately, I’m enrolled with Meals on Wheels, a volunteer organization that delivers prepared meals to the homes of disadvantaged seniors. I’ve struggled with cooking because Usher syndrome and retinitis pigmentosa have caused most of my vision to deteriorate. Unfortunately, Meals on Wheels is also experiencing a lack of volunteers because they fear COVID-19. Many are high-risk senior volunteers, too. More people are applying for this service, further straining our already vulnerable community.

I called my daughter, Ana, at her work internship program in San Francisco and left a voice message. I wasn’t feeling too well myself; after a visit with Grandma at the nursing home on March 7, I’d developed malaise and a persistently sore throat.

After hearing the dramatic news, I thought, “Perhaps I’d better self-isolate.” My doctor’s office happened to call and they agreed with this idea.

Ana finally returned my call and revealed that she, too, had been exposed to COVID-19. The temporary housing facility she shared with others had ordered all the residents to leave within a week. The safety spokesperson from the CDC said that this order was for “liability reasons.” The site was near a homeless encampment. My fears worsened by the moment, developing into outright panic. Ana’s fears had become my own.

“People are dying everywhere,” she said. Ana also mentioned she saw someone attempting to jump off the bridge. My heart sank. My prayer warriors and I prayed that Ana and others feeling similarly wouldn’t take their lives.

The fear of the unknown became the beast within.

I told Ana she could stay with me. She said it would be difficult to come back home after living independently for a few years. I also knew that living with someone who is almost deaf, like me, can be challenging. You have to face me directly so I can read your lips. Soft voices or whispering won’t work, either. You can’t talk to me from another room; you have to get out of your comfort place and come to me, or vice versa. My siblings can tell you more about that!

Yes, I talk loudly because I can’t hear my own voice. Yes, I run into walls and bang into doors because I’m blind. This can be worrisome for some, but not for me.

Life is not always a bowl of cherries.

So, how do a high-risk, almost deafblind mother and her potentially COVID-19-infected young daughter maintain social distance in a small one-bathroom bungalow? Prayer, high-powered hearing aids, clear communication, and respect.

Housekeeping issues, such as cleaning, picking up, and organization, are a problem for both of us. Walkways, counters, and tables need to be free of clutter. Ana has accumulated more furniture, plants, bicycles, art supplies, and other things. Ana suggested that I donate my furniture and “nonessentials,” but I told her, “No way, José!”

Ana always has cheered me on: “You can do it, Mom!” Now it’s my turn to cheer her on. My vision has deteriorated significantly, so Ana has had to help me around the house. It’s a difficult position for me to be in; as a single mother, former nurse, and eldest child, I’d always been a caretaker. My mother was also a single mother raising six children, so caretaking is in my blood. Ana hasn’t seen how I have to use touch more to navigate my surroundings. Because she is sighted, she will have to make the the effort to distance.

Face masks hinder my ability to read lips and discern what people are saying when I go out in public. Public transportation such as BART, buses, or Amtrak will be a challenge with the mask; I’m not sure how this will work. I cannot rely on Ana to be my chauffeur: will I be in Hermitsville?

Where is that bowl of cherries?

We have an old garage that was converted to an accessory unit that miraculously became vacant for a few weeks. This unit gave Ana plenty of space and time to quarantine, organize, and heal from all the commotion.

I learned basic sign language as a child, and have done some tactile sign language with the deaf community. I am currently learning Braille via Bluetooth hearing aids and iPhone. My goal is to master Braille, in case I become deaf.

Ana has decided to settle at home with me for now. Yes, I am reminded to lower my loud voice on the phone, especially at night, to avoid disturbance of the peace. No, I can’t eat food with my fingers; I know this looks primitive to our sighted friends with table manners. Yes, I remind her to keep things out of my way, to which she responds, “I know, I know, Mom.” We keep our distance, not just to avoid spreading COVID or colliding into each other, but to maintain our sanity.

All the same, though, we need each other. On Mother’s Day, we took a walk, Ana serving as my sighted guide. As I gently held Ana’s elbow, this brought back memories of holding her tiny hand as a child.

Life can be a bowl of cherries.

I Like Being a Mom with a Disability

In this video, Jessica Salmond, a mother with an intellectual disability, describes the ways she supports her children as a parent and activist.

From the video: “And I like being a mom with a disability because I’m able to help my children with their disabilities. So, I’m able to be at their IEP meetings and understand what the IEP is about, be able to suggest different programs or different organizations. I’m also able to speak out on behalf of their disabilities and tell people what their limits are, what they can do. I also sit on disability boards to speak out on mental health and people with disabilities and children with disabilities.”

Continue reading “I Like Being a Mom with a Disability”

I’m a Capable Mother, It Hurts to Have to Prove It

A close up shot of a woman smiling brightly at the camera. She has brown skin and short straight black hair. She is wearing silver hoops and burgundy glasses. She seems happy in the photo.

by Sequoia

I was diagnosed with cerebral palsy at age two. It affects my legs, and I walk on a walker. I’m  a strong-willed person who always strives to be independent to the best of my abilities, so I complete most of my daily routine on my own. When I put my mind to something, it is hard to convince me I can’t achieve it.

Now, I am the mother of two boys, ages four and two. They mean the world to me, and I’m grateful to have them. The moment I found out about my pregnancies, I committed to learning everything needed to care for them. Google was my best friend and still is as they are getting older.

However, just knowing how to care for them without proof was not enough in the world’s eyes. A barrier I faced as a disabled parent is not having a custody agreement in place for my kids. This is something all parents should have, but it’s even more important for disabled parents to have because we are already seen at a disadvantage. I’m sharing my experience because no one told me that without a proper agreement in place you are assumed unfit just because you have a disability. People sometimes count us out when it comes to parenting and that is a painful reality to live through.

I was three months pregnant when my ex got angry with me and took custody of our oldest son without my permission. He felt I should only have supervised visits. This shocked me because I had always been our son’s primary caregiver. We had never been apart, not even in the hospital. When I refused supervised visits I was not allowed to see my son, and there was nothing anyone could do about it. I would beg and plead with my ex to give me back my rights as a mom because legally I knew his actions were wrong. Some even agreed with him because of my disability. It was devastating.

The effects of not seeing my son weighed heavily on me. I couldn’t eat, sleep, and I felt helpless. The only thing that kept me going was my unborn child. It was important to me that I did not have the rights to my second child unfairly taken, so I went to court and filed for custody of my son. My second son was added after he was born. The road to seeing my son again and getting legal parenting rights for both of my kids was not easy, but it could have been easier if I knew what what I know now.

I had to take classes, have my home evaluated, and be medically evaluated by my primary physician. I also had to prove I could care for my kids and be left alone with them. The other parent only had to have his home evaluated. While I’m grateful to have proof that I’m a capable mother, it hurts to have to prove it simply because you are disabled.

It was almost a year when I was reunited with my son, and over two years before the case would be resolved in my favor. Imagine having to introduce yourself to your child all over again. No parent should have to do that. On the bright side, I feel that this happened so that I could help other disabled parents 

One of the things I learned is to prepare during pregnancy. Sit down with your partner, married or not, and discuss both of your roles in the child’s life physically and financially. Write down what you agree on and both parents should sign it and have notarized copies. Even if you don’t have to take legal action, keep it as a reference. If you have more children after agreeing, just reevaluate it. Take parenting, CPR, and any other class that prepares you for parenthood. 

Another thing I learned is having a custody agreement in place doesn’t mean there is conflict. It protects your rights as a disabled parent. So many make the mistake of waiting until a conflict arises to take action, but the truth is this something you want to have to keep conflict from occurring. Your partner (if they are not disabled) should never want you to be seen at a disadvantage because of your disability. They also should want you to have fair rights because this is your child too.

The most important thing I learned from my experience is not to be afraid. I didn’t act sooner out of fear. Not fear of the other parent, but my circumstances. I thought I didn’t have enough money; I wouldn’t be taken seriously; and that I had let my son down by not  taking what was offered to me so I could see him. But after pushing those fears to the side, the need to stand up for myself became stronger. I’m so grateful because I get to see my kids every day and know my rights will never be compromised again.  As disabled people, we have been overcoming obstacles our whole lives. Just look at this as one more thing you have to do for your voice to be heard.

Lastly, I want to encourage that if your parenting rights are being compromised go to your family and friends for support. It doesn’t matter what type of support it is as long as it’s helpful. There were times when I needed to vent, yell, and cry. Even if your loved ones have an opinion that differs from yours, listen because you will need a real-world perspective. Use their advice as strength to keep going if you want to give up

Parents with disabilities are still parents. We are capable of teaching, caring, and providing for our kids despite our barriers. We should never have our rights taken or questioned because we are seen as the weaker parent. The person parenting with you shouldn’t see you that way. But unfortunately, this is a barrier that we have to consider when becoming parents. But I am proof that this barrier can be broken.

A Silent Pandemic

Dylan stands in a blazer and jeans crossing his arms and smiling at the camera. There's fall foliage behind him.

by Dylan Ward

While everyone was busy preparing for the pandemic, I lost my hearing.

I’ve been living in silence now for about two months. I am hard-of-hearing and up until recently, I wore a hearing aid in my left ear; there’s negligible residual hearing in my right ear, in which I did not wear a hearing aid. Around mid-March, I sustained an injury to the head and because of the structure of my inner ear anatomy, the injury took away the residual hearing in my left ear.

I’ve been a stay-at-home dad to my seven-year-old son since he was two. It hasn’t always been easy for me as a parent. I don’t have the luxury other parents have with hearing their child in any situation. I’ve always worked harder to communicate with my energetic, stubborn son.

We were building a playhouse and I was careless, letting a board fall. Over the next days and weeks my husband and I visited the urgent care and ear specialists. Everywhere displayed coronavirus warnings and bottles of hand sanitizers reached for our hands. Some staff members wore masks and I was crestfallen. Without my husband, communication would have been impossible. Mask-covered lips are unthinkable for the deaf and hard-of-hearing.

Medicine and healing did not restore my hearing. Small adjustments were made at home since I couldn’t move easily with my vestibular imbalance and frequent rest was required. None of us knew enough sign language to communicate but we were patient with lip reading, sometimes reminding my son to slow down.

I began to wonder what it would be like with silence indefinitely, to parent a child I couldn’t hear. There were certainly worse things that could have happened to me. But I wanted to hear my son again. My Otologist encouraged a cochlear implant. Initially, I’d ignored the cochlear implant information sent home with me. They implied something I wasn’t ready for. How could I possibly have surgery in the middle of all of this? It also worried my son too, in ways I had not realized. I wanted to avoid it all, to simply get my hearing back. Over time, though, I accepted the situation and as I researched cochlear implants, I became less resistant.

The day of the surgery was exciting and daunting and strict protocols were in place for the hospital. My husband was not allowed to assist me in pre-op, but this time I was prepared. I’d installed a special captioning app on my phone with pen and paper at the ready. The app failed, of course, with poor reception. Handwriting everything seemed it would be too cumbersome for everyone on a schedule. Thankfully, the nurses and doctors pulled down their masks to speak, allowing me to lip read. The mask I wore probably put them at ease.

Recovery from surgery wasn’t easy. And I’ve never felt more disabled than I have these past few months. I couldn’t imagine going anywhere like I did before. My husband assumed the small tasks and errands I once handled, both to help me and to keep us all safe. He’s also done his best to work in a limited capacity and provide income.

It’s been challenging to parent an active child sequestered at home. The quarantine has forced me to parent in ways I had not anticipated between managing homeschool, daily home life, and taking care of myself in recovery. Homeschooling has been our biggest struggle. Online instructional videos are not captioned; virtual chats with teachers are out of the question. My son, who once loved going to school everyday, tired quickly of distance learning. The computer couldn’t replicate his classmates or teacher. He desperately craved that social interaction he’d lost and it hurt to see him hurting.

Everything that’s happened has put my disability into a different perspective. It made me realize how limited I really am, or have always been, both at home and elsewhere. It had been hard to hear my son before, but now I couldn’t hear him at all. I wouldn’t know if he was crying in another room. I’m tense and worried when he goes outside to play, constantly peeking out the windows just to be sure he’s okay.

My husband misses being able to communicate with me. My son misses normal routines. Sometimes he forgets daddy really can’t hear now and turns away when frustrated. Then I get frustrated and wear myself out with an upset child. Oftentimes I interrupt conversations without realizing it. At times my son has taken advantage of my inability to hear, sneaking around the house and hiding when in trouble or taking an extra treat when not allowed. But he’s seven. Sometimes I let this slip, sometimes I don’t. We’re already stressed from these unusual times, so I give my son a little leeway. I have to let him do something he doesn’t normally get to do. No one is harmed from it and this gives us small moments of happy.

I’m hopeful for the future, that the cochlear implant will enable me to hear in new and improved ways. I’ve adapted to a world that cannot be together like we once did. I stay connected with family and friends via texts and emails. My son has embraced virtual learning more with a few adjustments made and he has fun with it. He’s been writing letters or sending funny pictures to friends and happily gets them in return. He’s also been helping daddy more and taking his time to communicate. We laugh at silly things I didn’t hear correctly and we cry for things we miss.

What is most important is letting him enjoy his childhood in a time like this no matter what is happening to daddy, who loves him always. My son is most comforted when I’m just with him. My presence makes him feel okay. I hold him and keep him calm. We just let ourselves be here, together.

A Frantic Improvisational Game Where the Points Don’t Matter

by David Preyde

A graphic with a quote from David Preyde. It says, “Now, when you’re disabled, you are made to feel that you’re a burden. You’re made ashamed of needing things, of needing help. My wife and I call it ‘the shame of existing.’ I suspect all disabled folks have it, to a certain extent. It’s dangerous, because it’s so constant, and it’s easy to stop noticing, and it’s easy to internalize." —David Preyde, A Frantic Improvisational Game Where the Points Don’t Matter

All right, doing anything as a disabled person is bullshit. Going to get groceries is bullshit: if you’re autistic, like me, it’s too bright and too loud and too crowded. If you’re in a wheelchair, like my wife, half the food is out of reach. Walking down the street is bullshit- too loud, too crowded (for me), or nobody pays attention to you and bumps into you or blocks you (my wife). Hell, my wife almost got her ass killed trying to get off the subway, because the gap between the platform and the train was too big.

This is just ordinary, everyday shit.

Then you add parenting into the mix, and that’s a whole different thing. People don’t even think disabled people can have sex, let alone parent, and so the whole system of parenthood- everything from doctor’s appointments to daycares- simply isn’t set up for us. Everything we do is a mad scramble, a frantic improvisational game where everything’s made up and the points don’t matter.

Anyway, my wife and I are smart as hell, and resilient, so we made it work. We found a groove. My wife is the face of our relationship- she deals with other people, and does the detail work, and generally makes sure our lives keep running.

And I help keep my wife keep running by helping her out with all the physical stuff that needs doing; the stuff she physically can’t do. It works. Together, we are a full person.

Then a global pandemic struck, and holy shit. As if there wasn’t enough goddamn stress in our lives, we had to deal with a crisis of near apocalyptic proportions.

We had no idea how long it was going to last- a few weeks maybe?- so we farmed our toddler out to my wife’s parents. This enabled my wife to keep working at home without interruptions.

For a few weeks, that was fine. Everything kept functioning smoothly in our cozy bubble. But we missed our kid, and the world outside kept getting worse, and so after two weeks we made the decision to go and live with my in-laws until the pandemic was over.

Of course, this wasn’t easy to do, because my father-in-law had to rent a van and drive five hours across a wasteland of infectious disease in order to pick us up, and then drive another five hours back. Everything is bullshit when you’re disabled.

So that was a month and a half ago. Since then we’ve been sequestered in a very pleasant, very large house in the middle of nowhere. Nothing is within walking distance, and I don’t drive, which makes my wife and I dependent on her parents for everything.

Now, when you’re disabled, you are taught repeatedly that you’re a burden. You’re made ashamed of needing things, of needing help. My wife and I call it “the shame of existing.” I suspect all disabled folks have it, to a certain extent. It’s dangerous, because it’s so constant, and it’s easy to stop noticing, and it’s easy to internalize.

Not only are we depending on my in-laws for food and shelter, but we’re also depending on them for childcare. My wife continues to work full-time remotely, and my autism makes any change in my routine excruciatingly difficult. It drains me of energy and leaves me feeling unmoored. So right now I’m in survival mode, unable to do much of anything, and struggling with the shame of existence. I spend as much time with my toddler as possible, and do what I can. I feel it isn’t enough. My wife feels I’m doing enough, but that she isn’t doing enough. I feel she’s doing enough. We both feel the constant shame of existence.

My in-laws are pleasant people. They are nice. They are friendly. So it’s easy to ignore what’s happening under the surface. They’re big believers in bootstraps. They think if everyone just pulled themselves up by their bootstraps, everything would be fine. They think every problem would be solved if folks just made a little more effort.

Well, I can’t lace up bootstraps because I have dyspraxia, and my wife can’t wear boots due to chronic edema.

My in-laws’ pathological belief in the Value of Effort drives a wedge between them and my wife and I. We try to communicate with them, but they can’t understand us. And because they help us so much, I feel guilty resenting them. Aren’t they nice? Aren’t they decent? Aren’t they making an effort? If I made an effort, maybe I could be better. There it is again: the shame of existing.

When you’re disabled, everything’s bullshit. But that’s not the natural result of being disabled. It has nothing to do with disability.

It’s because we’re not accommodated. We’re not understood. Non-disabled people don’t make room for us.

If they only made an effort, our lives would be better. The non-disabled really need to pull themselves up by their bootstraps. They need to put their nose to the grindstone. They need to get their acts together.

I mean, I see non-disabled people try- bless their hearts- and their struggle is so inspirational. But if they’d try just a little harder, maybe their problems in coping with us would be solved.

Maybe the gap between them and us would be closed.

But I don’t really think that’ll happen any time soon. And I can’t dwell too much on the future. I have to concentrate on the present. Right now, I’m stuck in the middle of nowhere. I help my wife out as much as I can. She helps me. We help raise our kid the best we can, and try to remember that every parent is struggling right now.

But not every parent is dealing with this particular kind of bullshit. No one should have to.

4 Kids, Multiple Sclerosis, and COVID-19: Oh My!

Annette sits in her house smiling at the camera.

by Annette (Gugu) Spinner

My son called me in August, 2019. He told me that his wife had left him and their four children. He had lost his job amongst all of the mess because he had nobody to watch the kids while he worked. He  managed to get another job and would start on the following Tuesday.

Moms mouth opened and spoke without any thought. Dont worry, Son, your sister and I will be there by then!” He was 720 miles away. There were so many times in that week that I wanted to back out. Every time, all I could think was that my mama would walk through the fires of hell for me, I have no choice. So, I started putting items online to sell. I was running out of time.

I received a message that a lady was interested in my living room furniture. I posted it cheap, knowing that I didnt have much time. She came to get the furniture and I asked if she would be interested in the rest of the household furnishings free of charge, I had to go. Come to find out, she was starting a home for her 8 year old son and herself, fresh out of rehab. I put a few things in storage and told her to just pay it forward. We made it to Iowa from Arkansas on Monday.

Wow! 4 kids, ages 9, 7, 3 and 1. Get up, get two on the bus and start the day. Bathe two, both in diapers, feed them, clean house, do never ending laundry, have a snack for the older two when they arrived back home, cook supper, make sure the older two had baths, lay clothes out for tomorrow and literally fall  into bed around 8 PM. Do it all again tomorrow! Seven weeks of this and my work was done. Other arrangements were made and I wasnt needed anymore.

So, we headed back to Arkansas from Iowa. With my mothers help, we were able to rent a trailer. Im thankful that I was able to return, because my mom was 87 years old. She would have her 18th birthday on February 29 (leap year baby) and I didnt want to miss that. Well, it turned out that we buried her on her 18th birthday, I even got a birthday banner for her coffin, it made losing her pretty special. The odds of burying her on that particular day were unreal.

Turned out that my sons plans had backfired on him and he had not been able to work since December 31. He was sinking. The pandemic had began, he was scared of being stuck in Iowa with no job or any way of supporting the children for who knew how long. He had already gone through most of his tax return, but he loaded up his Suburban with babies, a few clothes and arrived on my doorstep on March 18, 2020.

In a 1970s model, three bedroom trailer, I went to work taking care of six, counting my 17-year-old daughter. Its what Mama does! In the middle of the pandemic shutting things down, he got a job. Not just any job, but a job with the city. Thank You Jesus!

I must admit that the job for Gugu is even harder than before. Since school is closed, due to coronavirus, I have all four children at home 24/7. Its 3 meals/2 snacks, four baths, cleaning, never ending laundry and CRASH!

I read that COVID-19 is a disease where your white blood cells dont protect your body from invaders. Instead, they attack your tissues, cells and organs. Another symptom is chronic fatigue. Its not the flu or a cold, a nap wont help. You will never get better. Hitting the gym and only eating a sandwich wont take off the pounds. No matter how long you sleep, you never feel rested. Get used to the last minute changes in plans because you dont ever know how you will feel. Painful muscles, bones and joints, hair loss, mood swings, anxiety and depression are just tips of the iceberg. You easily catch bacterial and viral infections. Even when you think you can fake how you feel, there will be days when you cant smile at anyone, no matter how hard you try.

How ironic! COVID-19 sounds an awful lot like what Ive been dealing with for 22 years, Multiple Sclerosis!

However, MS is what is known as an invisible disability. Most of the time, MS patients disabilities arent immediately apparent. I cant tell you how many people have said to me, You dont look sick.” Hmmm, what exactly does sick look like?

As a matter of fact, I saw a T-shirt that read,  “I will fight against MS because God chose me to fight it. While I wish the people around me could understand it, I wouldnt wish this for anyone.”

So, most peoples quarantine and isolation started around March, 2020. Mine started December, 1997. Most grandmothers would be totally enjoying having these four babies to take care of every day. I absolutely adore them, but its more than a full-time job for me to be able to get out of bed most days, much less take care of them all day, every day. However, every time a negative thought crosses my mind, I just thank God for the opportunity that He has given me. With my determination and His help, we will not only make it through this small stepping stone of Coronavirus, we will make it through many years of different obstacles. LOVE will see us through!

My Kids Have Learned Compassion and Empathy

Jenna is outside, smiling and looking directly at the camera. Black and white photo.

by Jenna Pashley Smith

olimoo.com

Im a mom to two kids aged six and eight. My disability is largely invisible: Ive had rheumatoid arthritis for twenty years and racked up various joint damages. My limitations change by the day: some days I feel relatively able, others I can barely walk. The unpredictability of this disease has been a challenge for my parenting from the very beginning. But as a result, this is also the only mom theyve ever known, a mom who winces  when they reach for my hand, but also one who can sometimes turn crooked cartwheels with them. Other days, Im the mom who limps around the house with a cherry red walker.

Being asked to stay home during the COVID-19 crisis has not been the horror I thought it would be. This disease flares up for me more under certain conditions. The normal suburban lifestyle in our area-overextended and extremely active-kept me on a constant rollercoaster of energy drains and physical strain. The permanent damage in my wrists, fingers, and an elbow mean that even driving is uncomfortable on my best days. And a good day could turn bad in a hurry. My children havent visited the zoo more than a handful of times, even though our city has a fantastic one. The 45 minute drive, plus miles of walking, means that Im completely trashed before weve finished visiting the elephants! So they miss out on things because of me. I try not to feel guilty about that. But when everything is closed, I dont have to feel guilty at all!

At home, I dont have to push to keep up with the myriad activities of school and friendships and activities that used to make up our daily grind. Ive always managed by juggling the days symptoms and adjusting on the fly. When I pushed too hard, Id cancel all plans and spend a few days in bed, recovering. Our friends never really saw me on bad days, so I dont know how many people actually really understand the degree to which this disease impacts my life. The pressure to participate or go out was always high in our social circles. Its a relief to not have any of that now. I dont have to worry about hurting anyones feelings by declining invitations. Instead, we garden. We take our books outside and read in the gorgeous spring weather. The kids have been kicking soccer balls around and practicing their handstands. I offer encouragement from the sidelines and nap when I need to.

My kids are pretty aware of when I need help, especially my daughter. Shell give me a shoulder massage or rub my hands. Ive been the recipient of many naptime facials” complete with abstract makeup and intriguing hairstyles! My son has become a voracious reader, and he likes nothing better than to cuddle up with a fat book. Thats an activity I can always participate in!

At the beginning, I couldnt rest at all. My anxiety was hammering away at any shred of calm I found. I didnt know if I could trust my kids to stay home, so I was on high alert all the time. We live in a close-knit neighborhood surrounded by families with kids all the same age. The children have a 1980s sort of existence, bouncing from house to house as they play all afternoon, sometimes all day on the weekends. Isolation was extra necessary as the neighbor affectionately known as Everybodys Grandma” and I were both high-risk individuals.

My inflammation got really bad during those first weeks. I was having difficulty using my hands and I was fearful of using some of the medication options at my disposal because my husband was (at the time), still having to go into the office every day. Halfway through our quarantine” he was furloughed to half-time. Its not ideal from a financial sense, but at least we still have health insurance, and the week off is a welcome relief for the whole family.

Once we found a rhythm for our weeks, my symptoms got better. I took care of myself in the small ways I could. And letting go of anxiety through breathing exercises, diving into my writing, and limiting social media really helped. In our old” life, we realized between school and activities, we only really spent time together as a family for a few hours every day. The quality time with my family has been amazing. Its allowed my husband and I to get to know our children in a new way.

One thing Ive noticed during quarantine is that my physical limitations have forced my kids to grow up differently than their peers. Other parents Ive talked to are carefully curating what their kids hear and learn about the pandemic (and life in general). Not my kids. I keep it age-appropriate, but we havent ever tried to shield them from the realities of pain and suffering. I dont actually want them to have a rosy, innocent outlook. I want them to recognize that pain is part of life. Not ideal, but real. They need to see that pain isnt to be avoided, but to be faced, whether its a scraped elbow, a knee swollen like a cauliflower, or grief. Pain is a signal, but until its faced, youll have no idea if the signal means stop!” or keep going!”

When we talk about staying home, even my extremely extroverted daughter understands that its to keep people safe. People like mama. And even if theyre sad about missing their friends, the sacrifice is worth it. Theyre not complaining about fairness, because the world isnt fair. Instead, they pray for the germs to die” and for all the people working tirelessly in hospitals and grocery stores. Living with me and my disease, theyve learned a compassion and empathy that gives me hope for the world theyll be part of rebuilding.  They keep going. And so do I.

Life During the New Normal

Sampson is looking down at the camera with a slight smile.

by Sampson Edowe (@Siriacy_Trust)

Life during the new normal” is being quite challenging for me, yet revealing. It has provided an ample opportunity for self-appraisal and introspection. It has also shown that what ordinarily appears unthinkable, undoable and maybe outright unrealistic is very much in the opposite. Such that I can conclude that at some point physical disabilities are not all regrettable hindrances but necessary limitations.

I am Sampson Edowe by name, 35 and a single parent with an amputated leg. Being a single parent of one daughter is most definitely going to be very challenging, most especially in the face of a pandemic. The current reality has brought along with it more discomforts amidst uncertainty. As a man who had being living with an amputated leg, I had already made some necessary adjustment to help me cope with my current situation. The adjustments had been coincidentally favoured by the stay-at-home rule occasioned by the outbreak of the coronavirus pandemic.

I have lived with my disability for almost three years now. The outbreak of the pandemic has indeed caused some changes in terms of my lifestyle, job and daily schedules even in my relationship with my twelve year old daughter who is still in high school. The novel coronavirus was first reported in Nigeria on the 27th February 2020. I could remember vividly I was returning from a private publishing firm in the ever-busy city of Lagos where I have worked for five years when the news of a man being tested positive for the virus was reported in the country. I was greatly troubled because I had read what western countries with even better medical facilities were going through. I imagined the worst as I feared my unpreparedness for the new evil was going to be costly.

The spread of the virus started gathering momentum in March and the first issue that shook my world was when the company driver that was assigned to take me to work was asked to withhold his services. I then had to rely on the goodwill of my neighbours to get to work for the few days the company kept running before everything grounded to a halt. The government had to enforce the city lockdown in order to curb the spread of the virus.

I had just paid my daughters school charges and my mortgage fees so I was barely struggling to stay financially afloat again. Battling with a nagging back pain that I felt was a result of the sedentary nature of my job made me feel everything was happening all too quickly. Having to cope with the adjustments caused by the lockdown policy has always given me nightmares. I tried to understand that walking about to get things I wanted was always going to give me difficulties because all along I had been reliant on friends and neighbours to get going. All that had since changed. Everyone is now trying to find ways to survive the uncertainties of the moment.

School had since closed and my daughter is constantly with me at home reciprocating all the love and care I have been showing her since she was a toddler. Though she is young, her level of maturity and understanding is rare. My married sister who lives a few miles away had been stopping by to help us in cooking meals most especially in the evenings but with the lockdown policy she could no longer stop by. I have now tried to do some cooking by myself with my daughter providing some little help. I had gotten a wheelchair to quicken my movement around the home and I tried to level every surface high enough to hinder my movement. This has help get around some places which hitherto I seldom enter like the store, kitchen and laundry room.

As the lockdown intensifies I tend to rely more on online shopping than I ever did before with the charges being at cut-throat rates.  Before the outbreak of the pandemic my company driver was given the permission to drop off my daughter at school in the morning where she was served breakfast and lunch before driving me to work. At work Id sent a colleague to help me with shopping if I ever needed anything. Sadly, all that is changed now as everybody is concerned about their own affairs.

With the graph of the pandemic rising daily I was among the first set of workers that was advised to work from home and was equally placed on a pay cut. The company had been severely affected by the pandemic and needed a little adjustment to stay operational. The pay cut has had dire consequences on my finances and well being at this period. I have already told my daughter that we are cutting down on the amount we are spending on buying cookies and also the money we spend on TV subscriptions. In addition to the discomfort caused by the pay slash is the problem of poor electricity supply which has hindered my productivity. I cannot work on tasks or ensure the timely completion of tasks that are assigned to me. As a result of this, I am constantly queried for not living up to the expectations by my employers.

My daughter who had been home now for almost two months now constantly battles with mood swings. She complains bitterly that she misses her friends and playmates in school to the extent that she makes it really difficult for me to be focused on tasks. The reality I face as disabled person is compounded by the outbreak of the pandemic. I can only wish that a vaccine for this virus be discovered early enough so that we can at least return to the period where we enjoyed the company and solidarity of others which the social distancing and lockdown rules have robbed us of.

Making Peace with Dependence

Kelsey looking at the camera

by Kelsey Thompson

I’ve been thinking a lot lately about the idea of independence.  Here in the United States, this seems to be a value we hold quite dear.  It’s a quality we admire and toward which we strive.  We seem to particularly enamored with stories of people who are self-sufficient, giving the impression that they take care of themselves without help.  This is abundantly true for those of us with disabilities who have literally fought for our independence in communities, employment, civic participation and technology, fueling revolutions like the Americans with Disabilities Act (ADA).  At the heart of that battle is a desire for independence.

The ADA was signed when I was ten years old.  It’s safe to say that I don’t remember much about what life was like pre-ADA.  I’ve been spoiled, in this regard, to have come of age in a time when people with disabilities like myself have opportunities like never before.  I’ve had a disability since birth and, growing up, I was a fierce fighter for my independence almost to a fault.  I loathed accommodations or assistance of any kind.  I saw “special treatment” as a weakness and I hated the feeling of needing help.  I craved self-reliance.  If there was even a remote possibility that I could do a task on my own, I had to do it on my own, even if that meant taking twice as long or terribly inconveniencing myself.  I was stubborn.

My disability is a vision impairment.  I’m legally blind due to a genetic condition called oculocutaneous albinism.  While I have a fair amount of usable vision, I have some limitations.  I use assistive technology to read printed materials and access the computer, and I’m not able to drive.  I’ve had several decades to get used to these things and before I had kids, I felt pretty comfortable managing my life.  I had the illusion of being independent.

In my 30s, I became a mother to two amazing children – one is now in preschool and the other is wrapping up third grade.  Here’s a glimpse of what our life looked like a few short months ago: my husband and I both work full-time jobs.  We have an apartment on the outskirts of Chicago where we live in a community that’s diverse, walkable and alive with businesses, restaurants and bars.  Our youngest kid goes to preschool at a daycare center at my work.  He and I are pros at traveling on public transit or via rideshares.  I used to get a secret joy every day when I went down to pick him up at daycare, strap him into his car seat or stroller and zip off to pick up my daughter at her after-school program.  It made me feel like every other mom to be able to do these things, even if I did have to do them a little differently.  Still, nondisabled parents will never understand the sense of accomplishment I’d enjoy when I was able to independently do the things that they do.  The sense of pride comes on a dopamine rush, like sneaking into a movie theatre or cracking a combination lock.  I had the sweet illusion of being self-sufficient as a mother.

The COVID-19 pandemic hit my state in early March.  That’s when life came to a grinding halt.  Schools, restaurants, playgrounds, libraries all closed.  Public transit and rideshare services suddenly became quite scary.  As an essential worker at a healthcare facility, my options to be home with my kids were limited.  I was blessed to have a boss who did his best to offer flexibility and support, but there was still the ever-present pressure to get to work – and how to get there.  I wasn’t comfortable with the risk of taking the bus or an Uber to work and reluctantly accepted help from my husband, who started driving me in to work.  I felt like a failure.  There I was, a grown woman with a great career who needed to be driven to work like a child.  I saw with disappointment that if I wanted to continue to care for my family and do my job, I had to sacrifice some of this sense of independence.  The days of strapping a kid into the stroller and power-walking off to the grocery store were gone.  Now I rely mostly on grocery delivery services, another ego blow (despite the undeniable convenience).

Over the last couple weeks, I’ve thought about this a lot (because what else is there to do during quarantine but think?).  I see now that I’ve never been truly independent.  None of us are.  Simply because I don’t have to utter those dreaded words, “Can you help me out?” doesn’t mean I’m winning the battle for independence.

But I think if there’s a revelation that we’ve all come upon during this pandemic it’s that no one is self-reliant.  We all depend on others to live our lives.  And that’s not a sign of weakness.  On the contrary, it’s these connections with others that enrich our lives with meaning and unpredictability.  I’m working on making peace with that.  As we gradually start to see open signs light up and neighbors tentatively stepping back into the world, I’m going to be looking for these little connections.  The barista who makes the perfect latte, the bus driver who empowers me to get to work, the utility worker who ensures that the crosswalk sign functions at the busy intersection in front of my hospital, the teachers who care for my kids – I depend on all of them to get through my day.  We all lean on each other.  And it’s a privilege to know that I have people on whom I can depend.