I am not okay. I fell into the trap of being hypnotized as I scrolled through all the content on my social media channels. I lapped up the suggestions to bake sugary snacks and drink wine for no particular reason. I was convinced that it’s absolutely normal to let yourself go, dress in ripped and stained clothes, and be a lump on the couch. “Whatever you do, do not pressure yourself into doing anything. At all.” Was the undertone in the memes that streamed past my scroll.
You Do You
Yeah, well that advice is the farthest thing from what I needed to hear and see. That is not how I cope. I am not passing judgment on anyone who needs to retreat to survive. But, if I were to continue to be lulled into this “do nothing” narrative, I would end up worse then I was when I thought I had COVID-19. I admit that the messages were stronger than me. I made a sourdough starter, I baked cinnamon rolls and carrot cake, and my grocery bill doubled. I snuck snacks into our bedroom. I binged Ms. Vicki’s while I binge-watched Ozark. Everything I had done to be healthy over the last 10 months went out the window. And, my body noticed. My asthma is getting worse again after it started getting better after I was sick. I have headaches, my bowels are in a rage, and I am retaining fluid from inflammation so badly that I have deep crevasses from the sheets on my whole body when I wake up in the morning. Oh, and I am not sleeping as well, and when I do sleep, I have nightmares. The unavoidable culmination of all of this is the number climbing on my scale every morning.
This is not who I am and this is not how I cope.
Who I am is a vibrant woman who shows up in life and does it completely. I am brave and courageous, and I never shy away from hard work or a challenge. I eat for nutrition not to drown my feelings. I treat sugar as a treat not a food group. I move my body. I drink water over wine 99% of the time. I show up for my kids and guide them to make their own choices and live with their own consequences. I deal with the difficulties of life head-on. And anyone who knows me knows my life has not been a cakewalk. I know crisis intimately. It is time for me to wake-up and remember who I am and what I am capable of getting through. I also need to remember how I do cope. Through a bubble bath, reading, walking in the fresh air, mindfulness and talking things out with friends or, at times, a therapist.
You Can Do It
I am not a lover of the rah-rah, motivational, ultra-positive movement. I don’t like the over-the-top, unrealistic, “life is always beautiful” bill of goods we’re typically sold online, especially in the small business world. But we don’t have to swing to the other extreme of buying into letting our whole life fall apart. Yes, the world sucks right now. Big time. But I will be damned if I roll over and take it. You can face this. Chose something small to start such as drinking more water. Everyone can drink more water! I am not saying you need to go out and learn a new language. What I am saying though is to make sure that everything you are doing or choosing not to do is a conscious choice made by your wise self and not a mindless choice dictated by social media.
If you read my last blog post, I described my first week of living with the Corona Virus symptoms. I promised to update everyone with my COVID-19 test results. I have since learned that it really doesn’t matter if I tested positive or negative and this is why.
My symptoms in week 2
I have continued to have my temperature fluctuate between 37.6 and 38.5 Celsius for the second week. That’s 14 days of a low-grade fever. I continued to battle fatigue, continued to have a dry “asthmatic” cough, continued to be short of breath. My heart raced and I felt lightheaded if I got up too quick. The muscles between my ribs on my chest and in my back ached from the strain of breathing.
On Monday March 30, my breathing was so labored, and I got so tired of breathing that I went to Urgent Care. Luckily, my oxygen saturation was 99% and my lungs were clear. The only real concern was my heart rate at 100 beats per minute. The doctor asked that I increase my inhalers and continue to get better at home.
On Thursday April 2, my COVID-19 test came back negative. The public health nurse suggested I speak to my family doctor about my persistent symptoms.
What my doctor had to say
“This could be a false negative or the seasonal flu.” She said that unless the test was deep enough to make me cough (which it didn’t) then it could be a false negative. Either way, there is a protocol for people with Coronavirus symptoms that persist beyond two weeks and I was started on antibiotics. Continue to take my inhalers, continue to self-isolate, call her back in 4 days if I haven’t improved. The test results didn’t matter for my course of treatment.
Why the COVID-19 test is giving us very little info
Nothing has changed as a result of my test. I am not any clearer on what is actually ailing me. I am not miraculously cured. I cannot kiss and hug my kids and none of us can leave the house. Can you imagine the way I have felt for the past two weeks if my asymptomatic husband went grocery shopping and brought home either the flu or Coronavirus or something else that I don’t already have? It would surely kill me.
My test didn’t inform our medical system at all. I get to sit in the statistic pile of over 98% of people tested in Alberta who came back negative. I wasn’t tested for influenza, so I don’t get counted in those statistics if I do have the flu. Instead of having scientific data to use to advocate for the flu shot, we have anecdotal “it was a bad flu season” that will be overshadowed by COVID-19. And, if this is a false negative, not only do I not get counted, medical science learns nothing from my symptoms, and I don’t get counted in the number of cases that have recovered. Not to mention that someone with milder symptoms and a false negative can be spreading this everywhere.
I have some personal lessons I need to sit with including my impatience with being sick for so long. I had a few people lovingly refer to the complications “at my age” which completely threw me for a loop. I don’t feel old physically! But the reality is that I am nearing the half-century mark. My mind may feel like it’s still 30 but maybe I need to listen to what my body has to say too. Slowing down to listen to my body is definitely a new habit.
My lessons for you: Get your flu shot. Take the COVID-19 vaccine when it comes available. Wash your hands and physically distance yourself from others. Rest when you need to rest and practice good mental health hygiene too. And, as always, be loving and kind.
This is not a medical journal. I am not going to share the latest data or public health information. This is an account of my journey living with all the symptoms of Coronavirus or COVID-19 and how I managed. I will update this blog as soon as I get my test results to clarify if I’ve only been living with the symptoms or the confirmed infection.
Allow me to start with a little bit of backstory. I used to be a registered nurse but now I am a writer. I once worked in a cardiac hospital during the SARS outbreak but now I work in the communications department for a charity. I am a mother of four, but my two young-adult children live across the country. I am a generally healthy and fit individual, but I do have a history of asthma during to allergy season.
- Friday, March 20: sore throat
- Saturday, March 21: sore throat, muscle aches, fatigue. Temp 37.6
- Sunday, March 22: sore throat, tight chest, achy, extreme fatigued, Temp 38.4
- Monday, March 23: achy, very fatigued, asthma cough, Temp 37.6
- Tuesday, March 24: fatigue, asthma cough and tight chest, light-headed, Temp 38.1 to 37.6
- Wednesday, March 25: fatigue, asthma and shortness of breath, Temp 37.6 to 38.4
- Thursday, March 26: fatigue, asthma and shortness of breath, Temp 37.4
- Friday, March 27: Drive through test day! Fatigue, asthma and shortness of breath, Temp 37.9
First, I don’t know where I picked up the bug. Two of my co-workers had been out of the country, but I could have just as easily picked it up in the community as there is now documented community spread. Our office closed on Monday, March 16 and I have worked from home ever since. Besides my trip to the grocery store Wednesday the 18th and running to the kids’ school to pick up their textbooks on the morning of March 20th, I haven’t been in public.
I noticed the sore throat on Friday afternoon while walking our dog. It got increasingly painful over the course of the evening but not so bad as to compare it to strep throat. Just bad enough to be annoying.
Saturday’s weather was beautiful, and we had planned a nature walk as a family. Socially distant yet still out in the great wilderness with mountain views. I told my husband Rod to go ahead with the boys—without me. Anyone who knows me well knows I had to truly be sick to give up a day in the mountains. I felt like I had the beginning of the flu and spent the whole day in bed.
On Sunday I woke up with a fever of 38.4 C (101.1 F). My nursing background told me this was a viral temperature, not a bacterial one. My chest was tight, I had a slight cough. It felt like I had a flu mixed with an asthma flare up except it also felt like none of the flus or colds or allergies or anything I had experienced before. I called public health and they told me to self-isolate, not to cook for my children, not to share plates, cups, utensils or towels, cough in my sleeve, wash my hands, and that someone would call me back with an appointment to go get tested within 4 or 5 days. “Call back if your symptoms worsen or on Friday if you don’t hear from us. No one is to leave the house.” I forgot to ask for how long, but I assumed they’d get to that when I was scheduled for the test.
I continued to work from home. If I wasn’t moving around, the shortness of breath was tolerable enough to sit at my desk and write or do graphic design. I can see how people could easily go about their everyday routines out in public spreading the virus, pushing through the discomfort to avoid using sick days if they even get sick days paid. I didn’t know if this would get worse and I wanted to keep my sick days in case it did.
I am an introvert who has worked from home for fifteen years. Staying home was not an issue. No one really complained. The kids stayed in touch with their friends online, played video games, slept in as regular teens do. Rod and I managed to share our home office and stagger our conference calls. None of us realized that we were missing the real world until a package I had previously ordered was delivered. When the doorbell rang all 4 of us and the dog and cat all went to the front door. Something different to our day!
Since none of us could leave the house we had to depend on Instacart for our grocery order. What I hadn’t planned for was the three-day wait before they’d arrive. With a bare fridge, grocery delivery was certainly the highlight of our week.
Though being home wasn’t much of a bother, I was longing for the energy to tackle a few of the projects I saw others doing on my social media feed. But I had no reserves left, by the end of a workday all I could do was stare at HGTV.
Avoiding the hospital
Tuesday evening, my asthma-like symptoms got so bad I was starting to consider a trip to the hospital. I wished I had an Oxygen Saturation meter. That being said, the last thing I wanted was to end up in the hospital because I knew full well that I would be in isolation and I wouldn’t see Rod or the kids until I was fully recovered. I have been on the other side of the bed donned in mask, gloves, and gown. I know how little time nurses spend in an isolation room, how much they avoid going in and out. I did not want to be in the hospital. So, I took my inhalers (Thank God I had both prescriptions on hand) and did the breathing exercises I taught so many patients so long ago and prayed that sleep would make things better. That level of shortness of breath became my new normal.
However, we were scheduled for a different hospital visit. My calendar reminded me that my transgender son, Mitchell, was due for his hormone blockers shot. The public health nurse’s voice echoed in my ear, “No one is to leave the house.” I called the clinic to see if we could devise a plan to have the medication delivered to our home so I could give my son his quarterly intramuscular shot. A very good friend picked up the medication from the pharmacy and dropped it on our doorstep. This was the biggest inconvenience for our family. Not bad, right? Throughout this whole thing I have been eternally grateful I had once been a nurse.
Social media has been absolutely horrible. Suddenly everyone has their epidemiology degree and the rest of them are the 6-feet-apart police ready to shame you into eternity for not washing your hands for 20 seconds every 2 minutes. I am not saying the #StayHome advice isn’t the best advice. It is. It’s just incessant and loud and everywhere. Add to that the regular media. Needless to say, I didn’t want to share with anyone what I was feeling. I even took a long time to share with my older kids that I wasn’t well because I didn’t want them to worry. The news can make this sound like a death sentence. Besides, if I were to have shared this initially, I didn’t have the energy to answer the barrage of questions that would ensue. I also didn’t want to have to defend the fact that I have been socially and physically distant and not in fact a covidiot. I feared that I would be judged as if I don’t know how to wash my hands or cover a cough. I suddenly and sadly identified with lepers.
Why I am sharing this now
I am a memoirist. I am a writer. While I am not working the frontlines as the nurse I once was, the least I can do is share the record of my experience in case it helps someone else. My first lesson for you is that you can have Coronavirus and feel well enough to work and spread it to others. I trust why the experts are telling us to stay home. Stay home. You can also have Coronavirus and feel like you’ve run a marathon by climbing a flight of stairs. This virus is not just a walk in the park for some of us. You can live out the duration of the symptoms at home, not every case of COVID-19 will need to be hospitalized. I got the same non-existent treatment at home as I would have not gotten at the hospital. Lastly, be nice to people. You have no idea what struggles people are facing right now—physically, financially, emotionally. Loving kindness to everyone.
“It’s too late for the doctor to see you now. She has another meeting to go to. But we do feel bad that you came all this way.” The nurse said in her gentle tone carrying the slightest hint of accusation for being late. Or maybe I just imagined it. “We were going to discuss starting Testosterone for Mitchell. That is what you want isn’t it, Mitchell?”
“Yes!” He replied and lit up with the biggest smile possible.
“Your therapist made a very strong case for you and your level of maturity.” The nurse continued to explain that she scheduled a new date and time to meet with the doctor and immediately after she would go through the injection training with us. She gave us a pile of reading material with a consent form to study over the next three weeks.
Mitchell’s feet barely touched the ground in the parking garage on our way back to the car. I felt like I was trudging through molasses. I had a smile on my face, I said all the right encouraging words, but deep down inside I carried the weight of responsibility. I was about to consent to permanently altering my child’s body.
The Truth of our Children
Mitchell was assigned female at birth. The third of my four children. From the birth of all my children, I felt an overwhelming sense of responsibility for their happiness and wellbeing. I’m sure all mothers do as well. After turning ten, my third child’s happiness was difficult to achieve. Anxiety, social awkwardness, isolation, and depression loomed large for years. I did everything you could imagine to alleviate my child’s pain. I consulted every specialist and sat through hours of psychological testing yet nothing emerged. No diagnosis. No magic pill. My child was just deeply unhappy. As a mother, I felt like I failed.
And then Mitchell finally came forward with his truth.
When he told us he was transgender, and that becoming a boy on the outside to match his identity on the inside would make him happy, I booked another therapist appointment. Ashamedly, I didn’t want that to be the answer. Society at large was not nice to transgender people. There had been states trying to pass laws around what restrooms a transgender person could use. This was not a magic pill solution. This was not something I can kiss and make better.
Because he was insistent, consistent, and persistent, our whole family chose to be affirming. We changed his name and pronouns, his wardrobe, and his room from pink to blue. But his body dysmorphia remained. It was time to involve the medical professionals who started him on hormone blockers. The blockers helped immensely and gave us a few years with our happy sunny child. But for the last six months before starting testosterone, the clouds of body dysmorphia gathered over Mitchell while he watched all the other boys in his class have their voices drop and bodies change. He started to need much more frequent therapy sessions to cope with feelings of hopelessness which precipitated the decision to start cross hormones.
Responsibility and Agency
A friend of mine once told me that when she discussed our family with her brother, he said that I should be in jail for child abuse for allowing my son to transition. I had read similar comments on social media, but it bore an extra sting to hear it from the mouth of someone I knew. Until the nurse made the appointment to start testosterone, Mitchell’s whole transition was reversible. Once you stop hormone blockers, puberty resumes. I could paint his room pink again. We could buy a new dress. That was my out card. I wasn’t responsible for a permanent change, only responsible for making my child happy.
The plan to start testosterone filled me with fear because I felt like I would soon be responsible for altering my child. As if my husband, the doctor, the psychiatrist, the therapist, and most importantly, my son didn’t have a part to play in this decision.
To alleviate the unbearable weight of responsibility on my chest, I sat alone on my couch and played the what-if game. I asked myself, “What if he was born with a congenital birth defect? Would I agree to lifelong medication and surgery?” You bet I would! In a heartbeat. So how was this any different? He was born with the wrong endocrine glands secreting the wrong hormone for his brain. The doctors are giving him the right hormone. Just like a diabetic is given insulin. It’s not that radical when I think of it that way.
In the beginning, my problem was that I thought to be transgender had an element of choice. Not necessarily that my son was choosing to be a boy instead of a girl, but that we had a choice in terms of how fast or slow he transitioned and a choice to “just dress like a boy” vs. medical intervention. It took me living with him through his body dysmorphia to realize that this was not a choice I got to make for my son. We must ask ourselves, at what point does a child have ownership of their own body or life.
The whole experience of parenting is the struggle to choose when to let our children be independent. At what age do we let them cross the street without holding our hand? When do we let them take the bus on their own? When do we let them drive alone? Add to that self-governing in medical decisions. At what age are you comfortable with your child seeing their doctor without you in the room? It may feel like never, but there are rules about when they can legally ask you to leave.
When it came to my son having autonomy in the medical decision to start testosterone, I had to remind myself that he was making those decisions with a medical doctor—a doctor who is using guidelines provided by scientific studies and supported by the World Health Organization definitions and UCSF protocols. My friend’s brother may call it child abuse, but that is an opinion based on his beliefs and feelings, it is not based on science.
I can’t say that I have completely given up my own belief that I am responsible for my children’s happiness and wellbeing, but I am getting better at handing that responsibility over to them. Mitchell is quite clear who he is and what he needs. How many adults can make those claims? By his example, I am spending more time focusing my responsibility on being a good mother by championing for Mitchell and other trans youth and living free from judgments.
It is no secret that we live in divided times. No matter what topic comes up, there is usually a very stark delineation between good and bad, right and wrong, us and them. You see it everywhere from Apple and Android to political parties. Sadly, you also see it within our own LGBTQ community. While you may think that you are standing up for the oppressed when you are shaming our allies—those who are truly trying to learn about our community and empower it—you are just creating a greater divide.
Why Allies matter
I am not one to ascribe to the idea that minority groups like the LGBTQ are victims and do not have the ability to stand up for what they want. You don’t need allies because you are poor, weak and helpless. That being said, we are still fighting for basic human rights in many places and there is strength in numbers when it comes to voting at the ballot box or with our dollars as consumers. We never want to be so ugly and mean about someone using the term “transgendered”* that we alienate someone who wanted to support us. We also need to return to the beginner’s mind every once in a while and realize that most of our terminology is “industry jargon” to a layperson. Every time you add another letter to the ever-expanding LGBT2SQQIAAP+ acronym you are putting up a barrier for the ally who wants to connect with you and understand you. Diversity and inclusion are wonderful. Let’s include well-meaning, humble cishet** friends. After all, they were just born that way.
I don’t know what to say, I don’t want to offend anyone.
I hear this comment regularly. Most often it’s from friends and acquaintances who know I have a transgender child and are struggling to use the right terminology so as not to hurt anyone’s feelings. They don’t know what pronouns to use, or to refer to him as my son. I can tell that these people are trying. I can tell they are genuine. I go out of my way to make it clear that before my son came out three years ago, I also didn’t know what to say. I am only a few steps ahead on the path and happy to share what I know without making it sound like they are idiots for not knowing what AFAB stands for (that’s assigned female at birth which is the most appropriate way to refer to my transgender son before he came out).
What Allies need to know
Pronouns are tricky and can be a new concept to our older generations, but this is where you can make a huge difference in being a Super Ally: don’t assume someone’s gender by what they wear and how they style their hair. Ask, “What are your preferred pronouns?” BAM! It’s that easy! And, don’t be shocked if someone who presents as a woman or a man asks to be referred to as they/them and identifies as non-binary.
It’s also important for allies to understand why some people are less generous than others when it comes to forgiving your ignorance and slip-up. It may be your only mistake that day, but the person you inadvertently offended may have had that same thing said to them 40 times before you uttered the words. Mistakes and micro-aggressions accumulate. Also, people are all in a different place in terms of their coming out journey. Jody might be a super cool trans woman who lets a misgendering roll off her back while Jack is facing discrimination with his parents at home and financial insecurity with his job and the last thing he has energy for is to explain to a stranger the difference between transgender and transvestite. It’s not easy for an ally to know who is in the best frame of mind to help educate them to be a better ally. This is something, like pronouns, that you need to ask about upfront and be forgiving if it’s not the best time to ask.
It’s hard to hate up close
This is a quote I heard Michelle Obama say and it has become my anthem as an advocate for the LGBTQ community. I share our journey with my heart on my sleeve to bring people closer, to create a connection, and to spread love. Those of us who are in positions of privilege and not in the throws of struggling with acceptance, if we can all drop the divisiveness and assume good intentions from the people reaching out across the divide, we all win. Dare to be nice.
*As an aside, transgender is not a verb. For example, someone is not gayed or latinoed. By saying someone is transgendered, you are implying that it is something happening to the trans person instead of acknowledging that it is who they are. This slip of the tongue can be quite innocent but reaches back to the old thoughts that LGBTQ is a lifestyle choice.
**Cishet is the short form for Cisgender-Heterosexual. Cisgender means you identify with the gender you were assigned at birth (usually by looking at the sex of your external genitals) and heterosexual means you are attracted to the opposite sex.