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.