Jennifer Burgmann

@jenniferburgmann | contributor
Super Contributor

Incorporating Grief Into Your Day-to-Day Life

Grief doesn’t ask you if it’s OK if it interrupts your day. Instead, it comes in like a thief in the night – stealing your joy and peace, all while dancing through the memories of what or who you’ve lost with little to no derision. Living with this is hard, as it’s disruptive in the worst ways. However, there are ways to incorporate grief into your life that make it a little less troublesome, where you can still honor the past while living in the present, and maybe even hopefully looking towards the future. 1. Keep their favorite flower in your house. I love this so much. When deciding how you want to go about this, your options will be going for real stems or silks. While I love real plants, my place isn’t set up to keep flowers alive for long and depending on the flowers it could get pricey pretty quickly. The pros of having a real flower is that you get to tend to and nurture it every single day. Additionally, it gives off lovely aromas. Cons? Well, having a thing that can die to commemorate someone who died could be complicated! Thus, silks may be your best friend. 2. Use their favorite coffee mug in the mornings or at night. Were they a coffee drinker? Did they have a favorite mug? Sometimes we can’t keep everything from a family member who passed, but a mug very rarely takes up space. Using that family member’s mug in the mornings is a great way to honor them, and keep something they loved in good use. 3. Use a number that makes you think of them for a phone passcode. Most phones have a passcode or password lock. Using a passcode that reminds you of them (birthdays, favorite foods or dishes they made, etc.,) is a way to use their memory in a very tactile way. 4. Wear a piece of clothing that they used to own. It can be small, like a watch or some jewelry. Maybe it’s a tie or a pair of shoes that you still fit into. It can also be larger — old pajamas or shirts that you can wear to bed, trench coats, etc., all work! 5. Keep a nightly journal where you write to them, telling them about your day. I love writing letters. If you already journal this may feel natural to you, but keep a journal where you can write specifically to them about your day. Put down what happened, who you talked to, what you’re worried about, etc. It still allows you to journal, while also honoring them and your grief all at once. 6. I know ringtones are pretty 2000’s, but make their favorite song your ringtone. Look. I know it’s not 2006 anymore and you’re calling people on an iPhone or some other smart phone and not an LG Chocolate or Motorola Razr (yes I still have my old one) but I still love ringtones and I think this is a nifty way to honor someone. 7. Use their photos or cards as bookmarks. If you’re a reader, this will help save the corners of your books, while also allowing you to see their face. 8. If you’re grieving a place and you own any remnant of that space, put it in an area you’re in every single day. I own a fake flower that was in my grandmother’s house, and it sits in my car so I see it whenever I drive. On good days, I see it and smile and on bad days I’m able to carry those places with me. 9. Buy a candle or a scent that makes you think of them and light it throughout your day. I’m a very scent-sensitive person, so this is a good way to embrace them like a warm hug in a way that’s comfortable and not too overwhelming throughout the day. These are just some basic ways. It gets more specific when you start thinking of who and what you’re specifically grieving, as you’re able to build more personalized things into your day. To think of your own things, sit with who or what they were, what small things bring them to your mind, what routines you have in your daily life and what grounds you, and how you can pair all of it together. Grief is tough to navigate , and as much as people say “they’re never really gone,” they are, but that doesn’t mean their entire presence has to disappear as well.

Struggling With Guilt and Grief After Losing of My Husband

Nobody warned me about the guilt. I have experienced grief and loss before, and am aware of its nuances and complexities. But I wasn’t prepared for the debilitating guilt that courses through me on a regular basis as I grieve the loss of my husband. I am inundated with regret and an impotent yearning to have a “do over” so I can get it right. All I’ve ever wanted was to do right by my husband, and I can’t help but to feel like I failed him in his last moments, and continue to fail him as I learn to navigate life without him. Five years ago, my husband was diagnosed with hepatocellular carcinoma (liver cancer). There is no cure for liver cancer, so for four years, he underwent various treatments to keep the cancer at bay and extend his life as much as possible. The side effects of the treatments impacted his health, and prevented him from being able to continue to work. However, between treatments he often felt “fine,” and seemed as strong and vital as I have always known him to be. On an average day, there were very few outward signs of the cancer that was lingering within, and people often declared how “good” he looked. It was sometimes easy to forget that new tumors were continuing to appear even as the treated tumors were shrinking, and that this insidious disease would inevitably take his life. In my eyes, my husband was still fit and vibrant and, despite his small frame, was as strong as a bull, mentally as well as physically. Despite the oncologist’s life expectancy predictions and everything I had researched and read, I continued to naively entertain visions of our lives together in the decades to come. In the Fall of last year, we were given the news that the cancer had metastasized into his lungs, and that there were no more treatment options available. My husband had less than a year of life remaining. The prognosis shocked me. My husband said that he didn’t feel like he was dying, and he certainly didn’t look it. He had lost weight, was more fatigued than usual, and he had buzzed his hair short because small patches of hair had fallen out, but he was still living his life as he always had, and assisting me whenever I needed help because of my own disability. My husband was determined to stay at home for as long as possible, and that’s exactly what he did. I was determined to honor his wishes and care for him as best as I was able, and that’s exactly what I did. But I was unprepared for his rapid decline, and because of my disability, I was unable to provide the care I so desperately wanted to. When it became apparent that he needed more extensive care, he agreed to be transferred to hospice. I was relieved that he could receive the safety and care that I was unable to provide him. The transport team came to pick him up, and I packed up a bag and headed to the hospice to meet up with them. Once I was satisfied that he was settled and sleeping in his quiet and cozy room, I went home for much needed rest. The next day, I returned and spent several hours with him. He slept the whole time, so I sat and talked to him, played music, and reminisced about our years together. I spoke with the doctor, who said my husband was in his “last weeks,” and described what they look for in a patient’s final moments before they pass so that I understood what to expect. I returned home that day with the words “last weeks” reverberating through my mind, determined to be there for him every day for as long as necessary. Just after I had crawled into bed that night, I received a phone call from the night nurse saying that my husband’s breathing had changed, and that I should come now. “Wait, that can’t be,” I thought to myself, “The doctor said ‘weeks’!” I leapt out of bed, rang my caregiver, and called for a wheelchair accessible taxi. My caregiver helped dress me, and we anxiously waited 25 minutes for the taxi to arrive. When we arrived at the hospice, a nurse greeted us, escorted us into the elevator, and pressed the button for the second floor. Then he turned to me and said “I’m so sorry. Your husband passed away 10 minutes ago.” I was stunned. As pain lanced my heart, and tears flooded my eyes, a tsunami of guilt slammed into me. I had failed him! I wasn’t there for him in his last moments, and he died alone. I was a selfish person, and a terrible wife! Why didn’t I stay with him that day instead of going home? Why did I wait for a taxi? I am ambulatory, so why didn’t I just leave my wheelchair behind, and have my caregiver drive me? As the quiet words of the head nurse washed over me, I pummeled myself with hateful names and sharp accusations, replaying my poor choices and their alternatives over and over in my mind. Two and a half months have passed, and though I am now learning to cope with it, every time I think of that day, I shed hot and bitter tears of guilt. And that is not the only reason I feel shameful. Over the last few months, I have encountered several new circumstances that have only reinforced the feelings of guilt that seem to ride in the wake of the grief that permeates my life. About a month after my husband’s passing, I received a group life insurance payout from his employment. It is a comparatively small amount as far as life insurance goes, but it is more money than I have ever possessed. Aside from paying for cremation and memorial costs and a few gifts to loved ones, the funds sit untouched in a savings account. There were some things my husband had wanted to do before he died, but we were unable to afford it. The irony of now being able to afford it fills my heart with sorrow, and I cannot bring myself to use those funds without my husband to share it with. Every time I consider using that money for anything, I remember why I received it in the first place, and guilt prevents me from going ahead with my plans. A little time has passed since the memorial, and I am trying to live my life without my partner, but the days feel longer and lonelier. I have been trying to busy myself with various activities to occupy my mind and fill the many hours I spend alone. Sometimes I’ll go for hours without thinking about my husband, and when I realize it, I feel a pang of guilt. And if I’ve been enjoying myself, the pang becomes sharper and more intense. It makes me question my love for my husband and my sorrow for his passing. I feel cold and callous for “moving on.” Recently, I have been struggling with thoughts of what my future entails. When I married my husband, I assumed I would share the rest of my life with him. I had visions of growing old together, secure in the knowledge that my special person would be by my side throughout my life. I wonder if I will ever make another connection as special as the one I had with him, and I fear I will spend the rest of my life alone. Each time these unbidden thoughts come to mind, shame washes through me, and I am disgusted with myself. I just lost my husband! I have absolutely no romantic desires, and zero interest in dating for a very long time, so why would I be thinking of such things? It makes me feel like I’m subconsciously wanting to replace my husband with someone new, and this fills me with self-loathing. At first, I was unable to talk about it with anyone, fearing they would see how selfish I am, and confirming that I was dishonoring the memory of my husband. But when I finally found the courage to share these thoughts and feelings with loved ones, I was surprised and relieved by the support and validation I received. I discovered that I’m not alone in this, that my experiences and thoughts and emotions are quite common. Perhaps even…dare I say it?…normal. This knowledge has not put an end to the moments of guilt that I still frequently experience, but it is easing the ugly self-talk I’ve been flogging myself with over the last few months. After talking to a number of people about my husband’s last moments, I’ve learned that not being with him at the moment he died is far from unusual. I have heard so many stories about people who “just stepped out for a minute” to go to the bathroom or take a walk, only to return and find their loved one had passed while they were gone. It was once suggested to me that, perhaps, the guilt I feel is actually a testament to how deeply I loved my husband. After all, if I did not love him, I would not feel so terrible about letting him go. These kind and gentle words gave me a fresh perspective, and helped me feel much better about myself as a wife, friend, and human being. I am beginning to forgive myself. I am beginning to see that I am not selfish or callous or cold. I am grieving the loss of someone immensely special to me, and it is a complex and intricately nuanced process. There is no “right” way to grieve, no step-by-step guide, no chart or timeline by which I can gauge my healing process. I don’t know how long it will take, or whether I will ever stop feeling these pangs of guilt. But I’m recognizing that the healthiest way to move through this is to remember that I’m not alone in feeling the way I feel, to allow myself to experience whatever comes up, and to try to be gentle with myself along the way.

Struggling With Religious Belief After Medical Trauma and Disability

I was born into a Roman Catholic family. We went to mass on religious holidays, had weddings and funerals officiated by priests, and prayed before meals at family gatherings. Like most of the other kids I knew, I was baptized, attended Catholic school from K-12, and celebrated my First Holy Communion, Confirmation, and Confession. I read the Bible, completed the mandatory Religious Studies in each grade, and memorized the Lord’s Prayer and the Hail Mary. In my child’s mind, God was a mysterious and powerful figure who watched over me (which was simultaneously comforting and frightening), Heaven was an ethereal idea of the wonderful place waiting for me when I die, and Hell was the terrifying end I would experience if I had been a bad person. In my teens, I learned about other religions of the world, and my perspectives on spirituality expanded and evolved. While I did not doubt the existence of a Higher Power and the possibility of life after the death of my physical body, I began to question the contradictions and circular logic within the religion I had grown up in. As a result, I abandoned Catholicism, and became Agnostic for many years. In my late 20s, I discovered Paganism. This earth-based faith, with its triple aspect female deity and her male consort, supported the values and ideals I had developed over the years, and I embraced its practices and celebrated its holidays with enthusiasm throughout the following decade. But a few months after my 38th birthday, my life took an unexpected turn, and my attitude about spirituality did an about-face. After a series of vaccines, I developed a rare neurological autoimmune illness that hospitalized me for 18 months. As a result, my spiritual peace of mind came to an abrupt end, and I have been living (perhaps even struggling) with its absence for the last 12 years. The illness and rehabilitation process was the most terrifying, depressing, traumatizing chapter of my life, and not once did I experience the support of a higher power or any indication of an existence beyond the physical realm. Did I pray? You bet I did! I prayed in earnest. I begged. I raged. I tearfully pleaded for relief from the pain, fear, and loneliness I was enduring. When I didn’t receive a response from the Goddess of my Pagan faith, I reached out to the God of my childhood. Sometimes I prayed for healing, sometimes for guidance, sometimes even for death. I received no reply. Twice, while I was in the six-week coma, I teetered on the brink of death, but I was completely unaware of it. There was no tunnel, no white light, no passed loved ones coming to greet me, and certainly no godly entity welcoming me to an eternally peaceful plane of existence. There was nothing. Just a blank space where time continued to march on without me. I was certain that such a sudden and traumatic event should elicit some sort of spiritual experience or divine intervention. When it didn’t, I felt disillusioned and slightly betrayed. I had spent so many years having faith in a higher power, but when I needed them the most, they were nowhere to be found. I came to the conclusion that it must be because no such entity exists, and there is no realm beyond death; when we die, we simply cease to exist. I have shared my feelings and conclusions with many different people, and it has been met with a variety of reactions, from sorrow for my “loss” to outright judgment of my “attitude.” I have been given advice on how to find God again, and heard all the vague explanations and platitudes: “Everything happens for a reason.” “God only gives you what you’re strong enough to handle.” “Maybe there is a lesson in this that you’re supposed to learn.” “God works in mysterious ways.” “God always has a plan.” But none of these have been helpful to me in coming to terms with my experiences versus my expectations. In fact, many times, they have only created more questions. My husband once said, “You can pray as much as you want, but sometimes the answer is ‘no.’” My response to this was, “But why?” Why would a benevolent, loving, compassionate god not want to help if it’s within their power to do so? Why would they stand aside and allow such intense suffering to continue? And if there is some divine purpose for it, why wouldn’t they at least offer a guiding hand? It made no sense to me. The alternative was much more logical. It was even somewhat comforting to imagine that death was like falling into a dreamless sleep, where all my pain and worry would simply wink out of existence. So I’ve spent the last 12 years denying the need for spiritual practice, and viewing life and death in much more “realistic” scientific terms. Recently, however, I have found myself revisiting the possibility of a higher power and life after death. My husband passed away from liver cancer two months ago. He had a lifelong faith in God and Christ, and was always curious (even sometimes excited) about what his existence would be like after his death. He loved astronomy and absorbed every bit of new information about space and the latest scientific discoveries. He often said that he hoped, when he died, that God would let him fly around and explore the universe. I miss him terribly, and often talk to him, hoping he is listening. The possibility that he no longer exists is deeply disturbing to me. I cannot stand the thought that he might not have gotten his wish for his afterlife. And the idea that I will never see him again fills me with a profound sadness. The dichotomy of believing there is no existence beyond death and hoping my husband still exists somewhere created an eddy of uncertainty that has sparked a whole new conversation with myself. So, once again, I am allowing myself to explore the possibility that there is more to life and death than science can explain. I am only human, after all, with knowledge and perspectives limited to my existence on this plane, in this reality, in this physical vessel. Absence of evidence is not evidence of absence. Who am I to say what other possibilities and realities exist? I have no idea where this new openness will carry me, but I must admit that releasing my anger at god(s) and resistance to spirituality has calmed a simmering tension, and created a budding sense of calm. Most importantly, it has reminded me that spirituality is deeply personal, and is impacted by our experiences and circumstances. No one has all the answers, and no one alive knows what exists beyond this physical realm. There is no “right” answer, no step-by-step guide to attaining enlightenment. Every journey is valid, regardless of what you believe and where you are on that journey. If, like me, you have struggled with spirituality, be gentle with yourself. Allow your thoughts and feelings to evolve in whatever way feels right to you, and don’t let anyone convince you that you’re wrong. You don’t have all the answers, and neither do they.

Struggling With Religious Belief After Medical Trauma and Disability

I was born into a Roman Catholic family. We went to mass on religious holidays, had weddings and funerals officiated by priests, and prayed before meals at family gatherings. Like most of the other kids I knew, I was baptized, attended Catholic school from K-12, and celebrated my First Holy Communion, Confirmation, and Confession. I read the Bible, completed the mandatory Religious Studies in each grade, and memorized the Lord’s Prayer and the Hail Mary. In my child’s mind, God was a mysterious and powerful figure who watched over me (which was simultaneously comforting and frightening), Heaven was an ethereal idea of the wonderful place waiting for me when I die, and Hell was the terrifying end I would experience if I had been a bad person. In my teens, I learned about other religions of the world, and my perspectives on spirituality expanded and evolved. While I did not doubt the existence of a Higher Power and the possibility of life after the death of my physical body, I began to question the contradictions and circular logic within the religion I had grown up in. As a result, I abandoned Catholicism, and became Agnostic for many years. In my late 20s, I discovered Paganism. This earth-based faith, with its triple aspect female deity and her male consort, supported the values and ideals I had developed over the years, and I embraced its practices and celebrated its holidays with enthusiasm throughout the following decade. But a few months after my 38th birthday, my life took an unexpected turn, and my attitude about spirituality did an about-face. After a series of vaccines, I developed a rare neurological autoimmune illness that hospitalized me for 18 months. As a result, my spiritual peace of mind came to an abrupt end, and I have been living (perhaps even struggling) with its absence for the last 12 years. The illness and rehabilitation process was the most terrifying, depressing, traumatizing chapter of my life, and not once did I experience the support of a higher power or any indication of an existence beyond the physical realm. Did I pray? You bet I did! I prayed in earnest. I begged. I raged. I tearfully pleaded for relief from the pain, fear, and loneliness I was enduring. When I didn’t receive a response from the Goddess of my Pagan faith, I reached out to the God of my childhood. Sometimes I prayed for healing, sometimes for guidance, sometimes even for death. I received no reply. Twice, while I was in the six-week coma, I teetered on the brink of death, but I was completely unaware of it. There was no tunnel, no white light, no passed loved ones coming to greet me, and certainly no godly entity welcoming me to an eternally peaceful plane of existence. There was nothing. Just a blank space where time continued to march on without me. I was certain that such a sudden and traumatic event should elicit some sort of spiritual experience or divine intervention. When it didn’t, I felt disillusioned and slightly betrayed. I had spent so many years having faith in a higher power, but when I needed them the most, they were nowhere to be found. I came to the conclusion that it must be because no such entity exists, and there is no realm beyond death; when we die, we simply cease to exist. I have shared my feelings and conclusions with many different people, and it has been met with a variety of reactions, from sorrow for my “loss” to outright judgment of my “attitude.” I have been given advice on how to find God again, and heard all the vague explanations and platitudes: “Everything happens for a reason.” “God only gives you what you’re strong enough to handle.” “Maybe there is a lesson in this that you’re supposed to learn.” “God works in mysterious ways.” “God always has a plan.” But none of these have been helpful to me in coming to terms with my experiences versus my expectations. In fact, many times, they have only created more questions. My husband once said, “You can pray as much as you want, but sometimes the answer is ‘no.’” My response to this was, “But why?” Why would a benevolent, loving, compassionate god not want to help if it’s within their power to do so? Why would they stand aside and allow such intense suffering to continue? And if there is some divine purpose for it, why wouldn’t they at least offer a guiding hand? It made no sense to me. The alternative was much more logical. It was even somewhat comforting to imagine that death was like falling into a dreamless sleep, where all my pain and worry would simply wink out of existence. So I’ve spent the last 12 years denying the need for spiritual practice, and viewing life and death in much more “realistic” scientific terms. Recently, however, I have found myself revisiting the possibility of a higher power and life after death. My husband passed away from liver cancer two months ago. He had a lifelong faith in God and Christ, and was always curious (even sometimes excited) about what his existence would be like after his death. He loved astronomy and absorbed every bit of new information about space and the latest scientific discoveries. He often said that he hoped, when he died, that God would let him fly around and explore the universe. I miss him terribly, and often talk to him, hoping he is listening. The possibility that he no longer exists is deeply disturbing to me. I cannot stand the thought that he might not have gotten his wish for his afterlife. And the idea that I will never see him again fills me with a profound sadness. The dichotomy of believing there is no existence beyond death and hoping my husband still exists somewhere created an eddy of uncertainty that has sparked a whole new conversation with myself. So, once again, I am allowing myself to explore the possibility that there is more to life and death than science can explain. I am only human, after all, with knowledge and perspectives limited to my existence on this plane, in this reality, in this physical vessel. Absence of evidence is not evidence of absence. Who am I to say what other possibilities and realities exist? I have no idea where this new openness will carry me, but I must admit that releasing my anger at god(s) and resistance to spirituality has calmed a simmering tension, and created a budding sense of calm. Most importantly, it has reminded me that spirituality is deeply personal, and is impacted by our experiences and circumstances. No one has all the answers, and no one alive knows what exists beyond this physical realm. There is no “right” answer, no step-by-step guide to attaining enlightenment. Every journey is valid, regardless of what you believe and where you are on that journey. If, like me, you have struggled with spirituality, be gentle with yourself. Allow your thoughts and feelings to evolve in whatever way feels right to you, and don’t let anyone convince you that you’re wrong. You don’t have all the answers, and neither do they.

How Long-Term Hospitalization Can Severely Impact Dental Health

When my sister and I were children, my mother would put fluoride in our milk every morning, made sure we brushed our teeth twice a day, and took us for regular dental checkups and cleaning. Throughout my teens and adulthood, I remained diligent about my dental health, and aside from rebuilding a broken front tooth and two years of braces, had no dental work whatsoever. Not a single cavity in 40 years (which, apparently, is very unusual). But that all drastically changed in my 40s. In 2009, as a result of a rare neurological autoimmune illness, I was hospitalized and mostly bed-confined for 18 months. During my hospitalization, I received no oral health care that I can remember. When my mouth was dry, I was allowed to suck on a small, moistened sponge on a stick. Much later, I was permitted to chew ice chips, and suck the resulting water from my mouth with my suction wand. Near the end, after I had the tracheostomy removed, I relearned how to swallow and was finally able to eat and drink by mouth again. Never once, in the year and a half I was hospitalized, was my mouth cleaned or my teeth brushed. My oral health was completely overlooked. Under the circumstances, I imagine it was probably the last thing anyone was thinking about, including myself. But I wish it had been included in my daily care. It would have saved me a whole lot of discomfort, time, and money in the future. Some time after I left the hospital, I was finally able to see a dentist for a cleaning and check-up. The cleaning took an extraordinarily long time, and I grew more uncomfortable with each passing minute. I struggled to hold my mouth open and body still as the hygienist scraped and polished away years of plaque and tartar build-up. Afterward, the dentist looked at the x-rays and examined my teeth, then delivered the news: I required five fillings, and was going to need a root canal in one of my molars. For someone who had never had a cavity, this was quite a shock. I went ahead and booked the appointments to have the work done, and began following all the dentist’s recommendations to prevent further dental issues. Little did I know that this was only the first of many more issues to come. As the years marched on, despite my best efforts to maintain excellent oral hygiene, my teeth continued to deteriorate. I spent several years returning again and again to the dentist’s chair, wading through the red tape of funding, and often draining my already meager bank account. Today, I have 15 fillings, five root canals, five crowns, one implant, and I’m still waiting for funding approval for two more crowns. My husband’s dental insurance is pretty good, and the Ministry covers up to a certain amount per year. However, dental work is expensive, and many procedures (like crowns) are not fully covered, and some are not covered at all (like implants). So why did this happen? Tooth decay isn’t often noticeable right away. It can take some time before it is identified, and an improvement in oral care can prevent further decay, but does not reverse the damage that has begun. This is why I kept returning to the dentist for years after I left the hospital. There are many reasons for dental health issues, but the three main reasons people who have been hospitalized for an extended time develop tooth decay are dry mouth, inadequate cleaning, and medications. Dry mouth: The number one reason why long-term hospital patients develop dental issues is dry mouth. There are multiple reasons why a patient develops dry mouth, including ventilation, open-mouth breathing, brain injury, and disease. Saliva is an important component of oral health. Saliva provides a natural defense against acid erosion by neutralizing acids within the mouth, washing away food debris, and restoring minerals to the teeth. Decreased saliva production often leads to tooth decay and gum disease. Inadequate cleaning: When a patient is in the ICU and medical staff are fighting to keep them alive, oral health care is the lowest concern on the priority list. Issues such as lack of consciousness, intubation, ventilation, seizures, etc. prevent oral care from being performed. But even when the patient stabilizes and begins to recover, oral care is often overlooked. It is simply not included in the procedure that nurses and hospital aides follow in caring for patients. It wasn’t until I left the hospital and entered rehab that dental hygiene became part of my daily routine again. Medication: Some medications may have a direct impact on dental health by causing inflammation, infection, enamel erosion, or bone problems. Many medications, however, impact dental health indirectly through the side effect of dry mouth which, as I explained earlier, is a common cause of tooth decay. The fact that dental care is separate from health care is a mystery to me. Our mouths are a part of our body, and our oral health can impact our physical health. Gum disease is linked to a host of illnesses including heart disease, diabetes, respiratory disease, osteoporosis, and rheumatoid arthritis. Here in Canada, the importance of dental health and its link to overall wellness is becoming recognized, and there is a push for universal dental care. Until that happens, if you have a loved one in medical care, make sure oral hygiene is a part of their regular routine. They (and their wallets) will thank you!

Community Voices

"Punching down" is an ableist term

In the media during the last few days, there has been a great deal of discourse about Will Smith's slapping of Chris Rock during the Academy Awards. There is a term that is being regularly used that rubs me the wrong way and roll my eyes at the irony.

That term is "punching down". It is meant to describe a behaviour or statement that asserts one's authority over someone who is more vulnerable than they are, an 'easy target'. The term, used in response to ableist comedy, implies that the one being 'punched' is somehow 'less than' or 'lower than' the rest of society. This is ableism, folks. Which is why it is so ironic that the term is being used while condemning Chris Rock's behaviour.

Ableism is so rampant and ingrained that many people don't even realize they're doing it, even while they are defending the rights of those who experience it.

Thoughts?

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To the Nurse Who Gave Me PTSD: I Don't Need to Forgive You

Dear Nurse Monica, 2010, Royal Columbian Hospital, fifth floor, night shift. Remember? I was the bed-confined patient with the acquired brain injury who had just come from the critical care unit (CCU) for the third time. I was the patient who you felt was demanding and ungrateful, who rang the call bell too many times, who was a pain in your ass and needed to be disciplined. You probably don’t remember me, after 10 years. That actually kinda pisses me off, because I sure remember you. In fact, I can’t forget you. I can’t forget your abuse and how small and vulnerable and frightened I felt under your “care.” You still occasionally show up in my nightmares, and flashbacks of your cruelty continue to punctuate my life. I’m supposed to forgive you, Nurse Monica. Apparently, forgiveness is for my sake, not for yours. To heal and move on, I have been advised to forgive you. But I don’t. I can’t forgive someone who is still hurting me. Flashbacks of your actions from a decade ago feel as painfully humiliating as it did the on days they happened. The old wounds are torn open and fresh, raw emotion pours from the gashes. My mind now thrums with an anxiety that developed after being under your “care,” and my reactions to the intensity of those old memories are often shocking and unpleasant. I bet you didn’t realize just how long the impact of your cruelty would last. When you were screaming in my face, withholding my medication, saying things designed to humiliate me, did you realize you were causing the development of a mental illness that would plague me for years to come? Did you even realize what you were doing was wrong? Or did you know it was wrong and do it anyway? You never did apologize. After my husband gathered the other patients you mistreated and reported you to the head nurse, you suddenly (blessedly) disappeared. Months later, when you waltzed into my room, greeting me cheerfully, I reacted with such fear and anger, you were never permitted to care for me again. Even then you offered no apology, took no accountability for your behavior. Nobody did, in fact. Your behavior was never even mentioned by anyone at the hospital, and no one followed up on the impact it may have had on me. It had been quietly “addressed” behind administrative doors. There was no closure for me, no satisfactory resolution, no desire to forgive. But I’m OK with that now. I don’t need to forgive you. I’m healing all by myself, without giving the forgiveness you don’t deserve. I have worked through my experiences, and reflected on my own behaviors and attitudes. I look back on that frightened and lonely patient with empathy and kindness, and forgive her anger. I am not hypervigilant and angry anymore. I am much more content, and satisfied with my life. The flashbacks and nightmares are few and far between now, and I have not experienced post-traumatic stress disorder (PTSD) rage in a long time. You are fading from my life, Nurse Monica. Soon, you will be no more than a distant memory, a faded and forgotten scar, a mere blip on the cosmic radar of my existence. I do not forgive you, and I don’t have to. Forgiving you is not a requirement for my happiness and continued survival. You will leave my life like a forgotten guttering candle flame in the darkness, drowning in its own wax. That is my closure.

Attending Realwheels Acting Academy as a Performer With a Disability

Realwheels Acting Academy, offered by Realwheels Theatre in Vancouver, BC, is the first acting program designed for disabled performers of its kind in North America. I have had the pleasure of being a part of the first ensemble to enroll in the three-year program. In 2004, I earned a BFA in Theatre at Simon Fraser University. I had passionately immersed myself in the training, and although it was often physically and emotionally challenging with long days and sustained focus, I thoroughly enjoyed every aspect of it. It was one of the best experiences of my life, and I developed valuable insights and transferable skills that would benefit me in future interests and life experiences. Shortly after graduating, however, I had to start paying back my student loans, and I opted to work full-time. As a result of this, as well as mental illness and other life events, I did not pursue further training or a career in theatre. In 2009, I developed a rare neurological autoimmune illness, and the resulting acquired brain injury, coma, and hospitalization rendered me disabled and requires me to use a power wheelchair. For many years since then, I had been focused on physical rehabilitation, mental health recovery, personal growth, adapting to my impairments, relearning to navigate the world, and finding purpose in this new and very different chapter of my life. It never occurred to me that I could reenter the theatre community. I cannot remain standing for very long, have limited range of motion in my upper body, fatigue much more easily, and my vocal cords are damaged. Since I have always known acting to be a physical as well as mental and emotional practice, I assumed I was no longer a “suitable” candidate for a place in the world of performing arts. I was also acutely aware of how challenging it is for disabled people to pursue a career in film and theatre, with its history of inaccessibility and lack of inclusion and representation, and was intimidated and fearful. Then one day, while scrolling through social media, I came across a post inviting disabled actors in BC to audition for a new professional acting program. This three-year program is broken into three terms per year: Acting, Voice, and Movement, with Spring and Summer Workshops, taught by local artists with many years of professional experience in their fields. Classes are held twice a week for 3 hours each class. It is designed to provide artists with disabilities a solid foundation of acting training and preparation for a future in performing arts. The venues are accessible and there is a personal care attendant on hand at each class for those who require assistance. The best part: It’s completely free, generously funded by various organizations in BC and Canada. And an added bonus: A weekly stipend to offset the costs associated with disability. I couldn’t believe what I was reading! Free training with professional artists, designed specifically for disabled people, and they will even pay me to attend? Is this for real? What’s the catch? The only “catch” is that it is a pilot program, meaning it may only occur once. If I wanted to be a part of it, I had to act now. Still, I hesitated. It’s been over 15 years since I performed, and I was rusty. Was I too old? Too disabled? Would I have the energy and stamina? Did I still have the passion for the creative process that I once had? I attended the Open House on Zoom where I learned the details of the program and its mandates, and by the end, I had decided to audition. When I received the invitation to attend, I began to get excited about embarking on a new venture and meeting like-minded people, but I was nervous. It has been years since I was a part of a group, and my experiences have completely changed me. I am far more introverted than I once was, and I suspected I would be older than most of the other students. Would I fit in? In September 2021, I arrived at the first class of the Acting Term, and was greeted by Karen, our PCA, who held the door so I could enter, then gently and respectfully helped me out of my outerwear so I could get comfortable. I looked around at the other students, and was relieved to see that I was not the only one who used a mobility device, nor was I the only one with a few extra lines on their face and some grey in their hair. Judging by the fidgeting, furtive glances, and awkward introductions, I was also not the only one who was nervous. Our instructor, Shawn MacDonald, invited us to form a circle and we began with introductions and collaborated on a Community Agreement to ensure that our work together will be inclusive and respectful of each other’s identities and personal needs. Then Shawn led us in a few improvisation games to “break the ice” and warm up for the work ahead. By the end of the first class, we were all feeling more comfortable with one another and looking forward to the classes to come. As the term continued, we began to gain confidence and step out of our comfort zones, discovering there is power and creativity in that. We continued to grow and develop our skills through the Voice term, led by Alison Matthews, and are now well into the Movement term with Harmony Rose, with a Commedia dell’Arte Masks workshop by Susan Bertoia. The curriculum is as rich and thorough as any professional program, and the work is as challenging. The difference is in the approach and planning. The instructors have designed their curriculums with adaptations to meet the abilities of all the students, and are always mindful and willing to learn from the students and accommodate any needs that arise. As a result, everyone’s voice shines through and is heard, and we are able to express ourselves in our own unique ways. One of the things I was worried about was whether, due to my prior training, I would find the lessons challenging enough to hold my interest. While much of the material so far is not new to me, putting it into practice with a different body, voice, and mode of locomotion has been both challenging and fulfilling. In each class, I strive to adapt and learn new ways to practice the work with my limited physicality. As a disabled actor, I am learning how breath and awareness of my anatomy impact my body and my work. This was something I paid little attention to when I was a non-disabled actor because my voice was clear and resonant and my body moved the way I asked it to without issue. This awareness has helped me to discover ways to play my strengths rather than fret over my limitations, and has given me renewed confidence in my physicality. The best part of the Realwheels Acting Academy is the people. Right from the very start, I have felt welcomed and included by everyone involved, from the staff to the audition panel to the instructors. Our eight-member ensemble includes individuals of various ages, genders, ethnicities, and abilities. Each individual is unique and beautiful, and brings their own lived experiences and perspectives to the table. There is a profound level of empathy and mindfulness within this group that I find refreshing. It creates an environment of safety and comfort that allows each individual to work within the capacity they are able to on any given day, to simply be who they are, where they are, without judgment or pressure. The Realwheels Acting Academy has reignited my passion for creativity and the theatre, and given me new sense of purpose and a long-term goal to pursue. I have met and thoroughly enjoyed the company of many new people, which has brought a richness to my life. I have also had opportunities to be involved in other projects outside of the program that I otherwise would not have had. I was even paid for one of them. I truly hope this fledgling program will prove to be successful and worth offering again and again for disabled artists hoping to pursue a future in acting. I believe it is a giant step toward greater representation and inclusivity in the arts and entertainment industry. Realwheels Theatre: https://realwheels.ca/ Realwheels Acting Academy: https://realwheels.ca/academy/

T-Kea Blackman

Choosing Not to Have Children as a Woman With Mental Illness

One day, I decided to do some research on women who don’t want children, and I discovered the childfree movement. They’re a community of people who don’t want children, and when I found the movement, I finally felt like I had found my tribe. As the oldest of eight siblings, I helped my mom raise my siblings. While she did not require me to help her, I gravitated toward helping since I’m the oldest. At 9 years old, I changed my first diaper. I remember taking my little cousin who lived with me shopping at 12 years old — all by myself. In high school, we had the option of taking care of an egg or a doll for one week, and the doll was the type that acted like a real baby and cried. I was one of the few students who chose to care for an egg because there were five children in my house, ranging from newborn to 7 years old. I also worked at a daycare in high school, so I quickly learned that parenting involved far more than dressing children up in cute clothing. I’ve also struggled with my mental health — specifically suicidal ideation — since I was 12 years old. As I became older, my mental health worsened, leading to a suicide attempt. Throughout my recovery, I realized having children was probably not the best idea for me. However, I did not think being childfree was an option. I’m a woman. Aren’t I supposed to have children? Is something “wrong” with me for not wanting them? I decided to talk to my therapist about it, and I told her I was about 95 percent sure children were not in the cards for me. She told me my life is mine, and I do not need the approval of others or society. After my therapy session, I wrote a list of reasons to have children and not have children. Guess what? I came up with nine reasons for not wanting children, and I had zero reasons for having them. The first reason on the list was my mental health. As someone with bipolar disorder , sometimes I struggle to get out of bed, eat, engage with others, work, clean, and take care of my hygiene. I know having a child would likely cause me to struggle with my highly fragile mental health . I still struggle with suicidal ideation frequently too. I will also have to stop taking my medication when I am pregnant and risk being depressed during pregnancy and afterward. I know women with mental health diagnoses who are great mothers; however, I do not think motherhood is the best decision for me. I told this to my OB-GYN during my appointment, and she mentioned she has never had a patient consider their mental health before having children. Many joys come with being a parent, but it can also come with stress. Does this mean I don’t like children? Absolutely not! That is the mindset of some childfree people — but not me. I am a big sister and a cousin, a godmother, a mentor, and a soon-to-be-aunt. I watch children on weekends occasionally and enjoy my time; however, I do not think I can manage that responsibility 24/7. A friend once asked me, “Who is going to care for you when you’re old?” Ideally, parents prefer their children to care for them when they age, and many children do care for their aging parents. However, I also realize children are not obligated to care for their parents. I do not need to have children to care for me when I am old. I have poured love into so many children and have a big family, and I also plan to get married, so I doubt I will be left alone when I’m on my deathbed. I plan to make a will and discuss my desires with those close to me before I pass as well. I enjoy time with family and friends and also love speaking publicly about my mental health recovery, allowing me to meet hundreds of people who are inspired by my story. Still, I thoroughly enjoy having a lot of time to myself, so I travel alone often. I am happy by myself most of the time, and when I feel the need to be around people, I make plans. My values are also different from some others.’ The idea of starting a family does not excite me as it does for other women, and that is OK. I prefer to spend most of my time traveling, and I also want a fulfilling career that supports my mental wellbeing. Because of my mental health challenges, I am incredibly passionate about mental health advocacy, education, and policy. To help end the stigma around mental health, I teach mental health training, host events part-time for my business, volunteer with mental health organizations, and am the director of communications and programs for a mental health non-profit in Washington, D.C. I also plan to start a scholarship fund for black students who want to work in the mental health field and raise money for low-income children to access therapy. Traveling allows me to experience different cultures, have fun, take a break from my daily responsibilities, and practice self-care. Does this mean women with children can’t travel, participate in charity events, and have great careers? No, it does not. However, children are also a huge responsibility. Good parents often make sacrifices to ensure they raise responsible children. They typically do not have the flexibility to take a spontaneous trip without impacting their children. Some women are OK with making those sacrifices, and there is nothing wrong with that. However, I do not think I want to make those sacrifices and put someone else’s needs before mine all the time. I prefer to choose when to put my needs on hold for the sake of others. I don’t think “rolling the dice” by having children to see if my mental health can handle it is worth the risk. I also have more flexibility with my finances. As the oldest child, a god-mom, and a cousin, I can do a lot more for my family when I have the mental capacity to handle it. For instance, I am taking my mother and sister to Puerto Rico to celebrate their birthdays. As a parent, I may not have that freedom, and the children in my life can get what they want from me most of the time because I don’t have my own children who would need my finances. I feel extremely fulfilled doing things for others. I have seen many mothers judge other women for deciding not to have children. We are often called “selfish,” “bitter,” and “old cat ladies” and are sometimes told we will never know true love. Hearing those things can feel hurtful, but I also see stories online of women who regret having children. I would rather regret not having children than have it impact my parenting. Women should respect other women’s choices, whether that includes having children or not. One choice is not better than the other. Our values, health, and reasons for not having children are as unique as we are. Being childfree allows me to have the flexibility and freedom to manage my time how I see fit, making it easier to prioritize my mental health . Therefore, I am leaning toward not having children — and that’s OK.