Jennifer Burgmann

@jenniferburgmann | contributor
Super Contributor
Writer, actor, public speaker, and Netflix binger. In 2009, I developed a rare neurological autoimmune illness called Bickerstaff Brainstem Encephalitis (a variant of GBS) from a series of vaccines. As a result, I live with disability and mental illness, and use a power wheelchair. I became acutely aware of how differently I was treated by society compared to when I was non-disabled, and felt compelled to share my experiences. I write stories about my life as a person with a disability as a way of processing my experiences, and in the hope that others who share similar experiences feel validated, supported, and a little less alone. I am a member of the Realwheels Acting Academy in Vancouver, BC, run a Facebook page called 'A Day in the Life of a PWD', and create comics about the giggles and gripes about living with disability.

If You Struggle With Reading With ADHD, Try an E-Reader

I love stories. In fact, it’s why I’ve made it my entire life. I write manuscripts, here for work, for the screen, and in various other formats. Reading has always been such a fundamental part of my life but as I got older, it became harder to read. Once upon a time, I’d read up to 20 to 30 books in three months. The past few years I’ve been lucky to read even seven a year. It didn’t make sense because I loved reading so much, but I just couldn’t get my brain to cooperate. That is, until I got an e-reader, specifically an iPad. I wasn’t intending to switch to an e-reader, if anything because I liked to think I was a traditionalist. That fresh book smell, paired with feeling the pages under your fingertips, is unlike anything else. I still think that. I felt that switching to an e-reader would take away reading as an experience, and that’s why I was hesitant. Due to a long trip that I have coming up, I had no choice but to at least try e-reading. I begrudgingly tried it, and I haven’t looked back since. Since using my iPad, I’ve read almost four books in one month (for fun), something I haven’t done since I was a preteen. I was trying to figure out why it was so much easier for me to read digitally, and after sitting with it I think it largely is due to my attention-deficit/hyperactivity disorder (ADHD). Here’s why: 1. The screen itself. OK, I’m going to keep it a buck with y’all. There is no science backing up this theory in the sense that I couldn’t find any study to support it, and I really did just try. So this is my theory, and not medical or scientific in any sense. I read that digital screens tend to light up parts of our brains that keep us more alert . Because I’m reading from a digital screen, that part of my brain that keeps me alert is being triggered when reading, thus helping keep my attention. Makes sense, right? Of course, I’m not a doctor or scientist, but in my eyes, this makes complete sense. 2. I have to intentionally check to see how far I am in a book. When you’re reading a book, you can see when you’re halfway, closer to the end, or at the beginning. Sometimes when I’m starting a book I get intimidated seeing just how much I have to go. On the contrary, at the bottom of my screen, I’ll see “Page 45 out of 234” which is similar, but different as the visualization isn’t there in front of me. On top of that, I like seeing the percentage of how much I’ve read in the book. It motivates me to keep reading. Do I know why? No. But it helps. 3. Less overwhelm overall! If you’re a book lover or collector, you know what it’s like to have a to-be-read list that’s longer than a CVS receipt. Sometimes looking at all the books on my bookshelves overwhelms me to the point that I don’t read anything. For some reason, looking at my catalog of books on my iPad is the complete opposite. Is it that different? No. In fact, as digital books are cheaper I may be racking up an even longer TBR list. That being said, because I’m both reading faster and it’s not displayed physically in front of me, I tend to forget all the books I haven’t read exist, until I’m ready to read them. Object permanence plays into my favor here, and because of it, I read more. 4. You can control the settings. You can’t change the font, colors, or text size in a book. To be fair, I like that in a lot of ways because it’s a part of the book experience, but I won’t front. Being able to switch the page settings around in a way that’s visibly satisfying helps so much too. The flexibility is such a sensory win. Ultimately, I’m still going to buy physical books when I can, as I love having them; however, I’m way more productive when I’m reading digitally. If you live with ADHD, I suggest giving it a try. I resisted as long as I could, but I’m happily a convert now. Give it a shot. You never know what’ll work for you until you try. Take a trip into our Mighty Library for our health-related book recommendations: How Library Books Help Me Survive Long COVID 8 Awesome Children’s Books About Disability 12 Children’s Books That Smash the Patriarchy 10 Children’s Books That Feature Disabled Characters

I'm Grateful to Call Myself 'Widowed' After Losing My Husband

The first time I checked the box next to “widowed” under the “relationship status” section of a form, I paused, pen tip hovering above the sheet of paper. I was about to check “married” as I usually do, but reality reared its head once again. I thumbed my wedding ring, lost in thought. I continue to wear my wedding ring because taking it off would feel like a betrayal to my husband — a declaration of the end of my marriage. It would mean closing an important chapter in my life to make way for a new chapter — and I’m not ready for that. My husband passed away several months ago, and the dense fog of mourning and intense sorrow is just starting to lift. Although I am reminded of him many times a day, I am learning to navigate my life without his solid and comforting presence. I am often lonely and at a loss of what to do with myself, particularly during the times when we would usually be doing something together. But I’m finding new ways to occupy myself and to plan my days as a single individual. I suppose that technically, I am no longer married — but in my heart and mind, I still am. I didn’t choose this, and neither did my husband. Our marriage did not end on the day he passed away. We did not decide to separate from one another. I loved my husband and was faithfully committed to him — regardless of what was thrown in our path. His death doesn’t automatically change those feelings. With a wince, I placed a check next to “widowed” and moved to the next question on the form. For me, the term “widow” conjures up images of lonely old women living solitary lives, playing bingo and eating TV dinners while watching reruns. Film and television depicts middle-aged widows as bitter and sorrowful women who are too young to go through the rest of their lives alone — yet too old for the chance to find love again. Widowed young men are depicted as angry, heavily drinking wrecks with death wishes. Older widowed men are portrayed as anchorless souls in desperate need of new partners to make their lives worth living again. I am not keen to join this Lonely Hearts Club that society views as tragic and pitiful. And yet, I am grateful there is a term that encompasses the current state of my life — with no further explanation required. The word “widowed” explains why I still consider myself married even though my partner is gone, why I still wear my wedding ring even though my husband’s is tucked away in a drawer, and why I’m not interested in seeking romance even though I’m no longer legally committed to someone. Using the term “widowed” often garners empathy and compassion — rather than the potential judgment or legal probing that the terms “divorced” or “separated” may elicit. I do not have to sit through “plenty of fish in the sea” pep talks or offers to set me up with “this great guy I know.” Perhaps most importantly, “widowed” usually staves off the pressure to explain or discuss the tangled, varied thoughts and feelings I’m experiencing during this painful, lonely time in my life. Upon hearing that I’m widowed, most people just seem to “get it” on an instinctually empathetic level. I uttered the words “’til death do we part” 15 years ago — not knowing that day would come much sooner than expected and not truly understanding that the death of a spouse does not necessarily mean the end of a marriage.  The loss of my husband has legally changed my relationship status and has brought many changes in other areas of my life, but it hasn’t changed how I think and feel about my relationship with my husband. Only time will change that. Letting go is a process that varies from person to person, and it has no time limit. So with gentleness towards myself, I will take all the time I need to grieve. In the meantime, I am trying to embrace the word “widow” not as a permanently sad and lonely identity but instead as a descriptor of a momentary chapter in my life.

How Daydreaming Could Be Your Saving Grace Against Suicidality

Do you remember playing pretend? When we were younger we would get all of our friends together and put on our capes and dresses and pretend that we were somewhere else other than where we were. We were royalty, merpeople, super heroes, and firefighters. The sky wasn’t the limit, rather a starting point. Then we got older and reality called. Pretend sessions with friends turned to exams and that shifted into nine to fives where we can barely get through the work day without some cataclysmic event shifting our global landscape. Who has time to play pretend in a world as devastatingly traumatic as the one that we currently live in? What’s the harm in taking a trip into your imagination to remind yourself that life is still worth living I can’t speak for anyone else, but it’s because of that I doubled down into my game of “pretend,” and let my imagination roam free as a means of escapism and a resilience tool. Instead of getting a group together and figuring out who would be the queen and who would be the king, it morphed into scrolling house listings thinking about my dream home that I’d have when my life was finally together. It was going to bridal boutiques and trying on dresses, lying and saying that I was a debutante, when in reality I was picturing a day when I was loved truly for who I was inside and fully accepted as who I am. Every insecurity and fear that I had, I turned around and used as fuel for this giant game that only I was playing. Some would say all these excursions would do more harm than good as it’s distracting us from now. Little do they know these trips into my own imagination is what was giving me a reason to live. Have you turned on the news lately? Have you looked at how bad the world is at the moment? Inalienable rights are being taken from us, global conflicts and wars are happening at a scary rate, our coral reefs are damn near gone, and more is happening all around us. Our reality is scary at the moment and it’s hard to imagine a better tomorrow when with one scroll you see nothing but hate crimes, violence, fear, fascism, and authoritarianism ruining our world. It’s so easy to get caught up in what is going wrong, and it’s so much harder to remember that things that can still go right. Maybe they won’t. There’s always the chance that things don’t get better, but there’s still the chance that it will. If I only pay attention to the news then it’s harder to believe that, but when I go into a flower market and think of all the beautiful bouquets that my future home could have– no, will have, or the arrangements a significant other will one day create for me as a simple way to say “I love you,” I get a reprieve from all the things that bring me down. It gives me a reason to hope, to fight. I live with chronic suicidal ideation. There isn’t a single day that I don’t think about what it would be like to simply not exist. Every time I turn on the news, or when I open up a bills I can’t pay the list of reasons to end it all just adds up. Lost in a storm of my own thoughts, it’s easy to slip back into suicidality. That’s why escapism is so needed in these times. It’s why once a week I go to the closest luxury department store and put on the most expensive dress that I can find and I prance around as if I’m a princess in a fairytale. I deserve these little moments of calm that remind me that I’m still valid, worthy, and that I have reasons to fight for a better tomorrow. Yes, escapism can be bad if it’s actually stopping you from dealing with your life’s problems, but what’s the harm in taking a trip into your imagination to remind yourself that life is still worth living?

Janet Coburn

Can Sleep Apnea Affect Your Mental Health?

My husband and I both have sleep apnea. We also both have depression, or at least he does, and I have bipolar disorder with a pretty hefty depressive bent. Sleep apnea is a medical condition in which a person stops breathing multiple times a night. The body responds to this by resuming breathing after a second or two, but sleep disruption has already occurred. For my husband, this occurs up to 60 times a night, while it happens to me more like six times. Technically, my version is called “hypopnea” (hypo+pnea – low+breath; apnea, a+pnea – no+breath.) The body depends on breathing, of course, for oxygen, but it also depends on sleep – which is disrupted in sleep apnea – for proper functioning. REM sleep, for example, is vital for dreaming, which has multiple beneficial effects on the body and mind. REM sleep has been known to be altered in depression, and studies have suggested that it is involved in modulating mood symptoms, including psychological distress in general. One of the more observable symptoms of sleep apnea is loud and prolonged snoring, which both my husband and I have experienced. While I was traveling with my mother, she even requested that I let her go to sleep first since my snoring kept her awake. But what does sleep apnea actually do to the brain? Surely lack of oxygen to the brain has some effect. Indeed it does. According to research conducted at UCLA, “gasping during the night that characterizes obstructive sleep apnea can damage the brain in ways that lead to high blood pressure, depression, memory loss, and anxiety.” Sleep apnea has been associated with difficulty concentrating, memory problems, poor decision-making, depression, and stress. A study published in Sleep Health found that untreated sleep apnea increases the chance of anxiety by over three and a half times; depression, by more than three times; severe psychological distress, by not quite three times; and suicidal thoughts, by more than two and a half times. Sleep apnea has also been associated with PTSD. The Journal of Clinical Sleep Medicine recommends that “in individuals with [obstructive sleep apnea] and psychiatric illness, treatment of both disorders should be considered for optimal treatment outcomes.” Studies suggest that sleep apnea is linked with changes in at least two neurotransmitters in the brain (GABA and glutamate) that combine and coordinate signals that help regulate emotions, thinking, and some physical functions. Researchers plan to investigate whether treatments for sleep apnea will help these brain chemical levels return to normal. SSRIs (selective serotonin reuptake inhibitors) such as fluoxetine and sertraline (Prozac and Zoloft) are thought to be valuable in treating sleep apnea. One study indicated that SSRIs may be a good treatment option for [sleep apnea], particularly for those [patients] with epilepsy. Another study showed a link between “having sleep apnea and increased odds of having a mental health issue” or symptoms such as anxiety or thoughts of suicide. Treatments for sleep apnea include dental appliances to be worn while sleeping, lifestyle changes, and even surgeries. These treatments sometimes address snoring directly, but not the underlying mechanism. The more effective treatment is “positive air pressure,” delivered by CPAP machines. CPAPs use positive air pressure to keep the sleeper’s airway from collapsing, which is what impedes their breathing and jolts their brains into resuming it. They consist of a unit that generates air pressure, a hose and mask to deliver it, and assorted straps to keep the hose in place throughout the night. The masks can be ones that cover the entire nose and mouth or cannulas that are simply placed in the nostrils. There are also cushions on the masks or available separately that reduce discomfort as well as waking up with “mask face.” Many people find the masks uncomfortable to wear all night, but others use them not only at night but also for naps. Unlike a ventilator, the CPAP doesn’t breathe for a person. It allows them to breathe more effectively on their own. Diagnosing sleep apnea requires a “sleep study” ordered by a doctor. Assorted leads are attached to the subject, who then spends all night sleeping (or trying to). Breathing rate, heart rate, oxygen saturation, and other parameters are measured and a record is kept of the number of times the subject stops breathing during the night. This is sent to the doctor, who can then prescribe a CPAP unit and mask. Dan and I both use CPAP machines. They are a bit inconvenient, especially when we travel and have to take power cords so we both can use them at the same time (and power converters when we travel abroad). When it comes to packing, the machines are a bit bulky and somewhat heavy. Still, we take them with us religiously. Has sleep apnea treatment improved our mental health? It’s hard to tell, especially since we’re both taking SSRIs anyway. I know correlation isn’t causation, but our depression and bipolar have certainly eased up since we started getting treatment and our sleep cycles have become more regular. But if all it does is stop the snoring, that’s still a win for us. So, if you snore a lot and have a mental health condition, you might want to be tested for sleep apnea and treated if you do. Like chicken soup, it can’t hurt and might help.

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!