Nicole – Pandemic’s Effect on Safe Spaces and Mental Health Access
Nicole discusses how the pandemic affected access to safe spaces and shelters for those living rough and living with addiction.
Nicole – Advice for Other Professionals Managing Grief
Nicole discusses dealing with repeated loss while working in community outreach, not being afraid to be human.
By Mike Bonikowsky
Grief is the great leveller, and the great divider. Everyone grieves, sooner or later, but no two people will experience it in the same way. No two bereavements are the same, and neither are any two consolations.
This is only more poignantly the case for people with developmental disabilities. Not only is their grief completely unique, but they are often unable to express it in traditional ways. How are we to support someone through the grieving process when they cannot, or will not, tell us what they are thinking and feeling about their loss? The answer is simple, and difficult.
In Christian theology, there is a concept called “the Holy Spirit”. This is the invisible piece of God that is everywhere all the time, with and within all people. The name given to this in the original ancient Greek is the “Paraclete”, literally, “The one who comes alongside.”
That is also our best, and only role, when supporting a person with a developmental disability to grieve. We must be the one that comes alongside. There is no closer place we can get to. We must be present, be with, perhaps not understanding or comprehending what the person we support is experiencing, but alongside them nonetheless. We must be there, ready to provide whatever we can discover of their unique need in grief.
But that coming alongside must begin before the bereavement. We must already have been there through the happier seasons of the person’s life, if we are to know them well enough to read the language of their grieving, and hope to know in what little ways we may support them. Supporting a person with a developmental disability to grieve is not a matter of coming alongside, but of remaining where we already were. It is a matter of knowing and being known by them, of being trusted. It is not so much a matter of doing anything for the person, but of being something for them: A safe place, a consistent and reliable presence. It is to be a fixed point in a confusing, chaotic world, someone of whom they can say: “When that person is here, I can expect things to be like this.” Only when this relationship is present and well-established in the ordinary times can we come alongside in the darkest, loneliest season on the person’s life, and hope to meet their unspoken needs.
And usually the answer to those needs is what it has always been: To simply be there with them, to prepare a meal for them and do the dishes afterward, to help them wash body and find clean clothes to wear. To open the curtains in the morning, so that when they emerge from the dark cave of their unique grief, for however short a time, they are greeted by a world that has not ended, and a face that they know, and that knows them.
By Alyssa Warmland
The holidays can bring up a lot of feelings, especially when you’re grieving the loss of a loved one. Whether it’s the first holiday season without someone, the holidays mark a time where someone you love died, or it’s just hard to be around celebration when you’re not feeling celebratory, December can feel heavy.
These are a few tips for grieving during the holidays:
Remind yourself that it’s okay to feel however you feel.
Feeling sad or mad? Feeling happy- and guilty for not feeling worse? Whatever comes up for you is normal. It’s okay to sit with your feelings, to give them some space when it feels right, and also to compartmentalize them if you feel like that’s best in the moment. You can acknowledge your feelings, put them in your pocket, and hold on to them during the family dinner if you want to. You can take them out of your pocket and spend time with them later. Grief is unique, and can show up in unexpected ways. It’s okay to feel however you feel.
Reach out for connection.
Sometimes we worry that we’ll make someone else upset if we mention our grief, or if we show up in a way that isn’t particularly festive. The truth is, the people who care about us want to hold space for us, even when we’re grieving. Connection can help us feel better.
Find ways to incorporate your loved one(s) into celebrations.
Did your dad have a favourite side dish your family always served at dinner? Did Oma make sugar cookies every year? Did your sister always compliment you when you wore red? Consider serving dad’s dish, or baking Oma’s cookies, or wearing red.
Share stories about your loved ones.
Sometimes it can be tempting to pretend the people we love haven’t died. As if, by not talking about them, we can pretend they’re still around. In fact, sharing stories about them can help honour them and to feel their presence. Remembering our loved ones out loud in connection with other people can feel healing.
Watch/listen/read other peoples’ stories and insights about grief.
At griefstories.org , we host stories and insights from people with lived experience in grief, as well as healthcare professionals’ insights on grief. These videos, podcasts, and blog posts are available for free 24/7, anywhere you can access the internet. Our hope is that this content may help you feel less alone.
Listen to how your body feels. You don’t have to do anything you don’t want to do. You are safe and you are worthy of operating with integrity toward yourself. Grief can be hard, and it’s okay to be gentle with yourself as you move in and through it – even during the holidays. Set whatever boundaries feel right for you. There are no rules here. You’ve got this.
By Carrie Batt, Grief Educator
My son says I am a mover and a shaker. He tells his friends that because of my extensive travels abroad and my volunteering. When his friends ask: “Why did she do that?” he always tells them “Because my mom believes that ‘anything is possible’.” As I look back on my journey, I know where I picked up this motto. When my baby brother was born, the doctors told my parents: “he will not walk, talk, nor know who you are”. From that day on my parents embodied that motto ‘anything is possible’ and in the end my brother does far more than walk and talk. This circumstance introduced me to the disability community knowing that people with disabilities deserve and can do more. Interestingly, I have had the privilege of working within the developmental sector in a variety of positions for more than thirty years.
In 2018, I added to my parents’ motto ‘anything is possible’ and included ‘everyone is worth it’. I added those words to the motto right after I had attended a kintsugi workshop offered by Rami Shami, a prominent member within the deathcare community. As soon as I realized that Rami had spent the last 30 years caring for the dying. I inquired about his experience in death, dying and disability. Rami unfortunately, had no experience in supporting people with a disability who were dying. Upon learning about the sheer lack of support and expertise on this topic, I proceeded to complete the end-of-life training with Beyond Yonder Community Deathcare program. Soon after, SEOL Care was created, which offers a disability-sensitive approach to death, dying, and disability.
It has become clear to me over time that we have much work to do to ensure the delivery of disability-sensitive grief literacy and grief support. In March of 2022 my proposal for four 1-hour sessions was approved, we provided the program for 20 participants. My heart was full in each session.
My heart remains full of hope that conversations, education, and expertise about disability sensitive end of life care and grief support will gain momentum as more and more people join in on this vital conversation.
Currently, there are several rays of hope that suggest grief education and support can and will be offered in a more inclusive way. As a certified grief educator, I now offer online disability-sensitive grief support services for individuals and groups. My employer is offering disability-sensitive grief literacy sessions. The Bereavement Ontario Network has shared information through their newsletter and in a network webinar, where the gentleman I support and I were the guest speakers. Bereaved Families of Ontario have been receiving multiple requests to provide grief resources for the neurodivergent community. Additionally, Bereaved Families of Ontario are seeking out speakers with lived experience related to grief and under-represented communities for their grief literacy series. I remain grateful knowing that these are hopeful times, and these examples are a positive step in the right direction.
Rachel Herrington – Social Service Worker Graduate, Third Year Psychology Student, Equal Rights and Community Advocate
It has been 10 years since my grandmother passed away and it never fails, every year leading up to her birthday I spend weeks with a pit of sadness and remorse in my stomach. I spend my days feeling this way and not understanding why then something makes the date catch my eye and it hits – It’s her birthday.
When we are grieving, some days are more difficult than others. Grief comes in waves like the sea and can feel like an intertwining labyrinth of emotions. Birthdays, anniversaries, and special dates that are associated with our loved one who has died can contribute to more emotionally intense days which can be worsened through the anticipation and “what ifs” of the upcoming day. These difficult days can leave us feeling defeated and it can almost feel like we’ve taken two steps backward in our grieving process, but grief does not have a timeline, and these feelings of setbacks are opportunities for healing.
Before the Day:
Communicate and set boundaries with others – think about how you want to approach the day and share your wants, needs, and desires with others. Clearly communicating your wants and needs with others will allow the opportunity for you to set the expectation for the day which can help relieve the intense feelings of anticipation.
Remember there is no right or wrong way to celebrate special days – It is important to remember that there is no right or wrong way to grieve and there is no written code or rule on how these special days are to be approached. However you decide to approach the day is the right way.
On the Day:
Allow yourself the opportunity for space from others – it is important to allow there to be an opportunity for you to step away and have a safe space to feel your emotions if you need to. If you are attending someone else’s home for the occasion plan a way that you can step away or leave with ease if you need to.
Find something that grounds you when intense emotions arise – if intense emotions are arising it can be helpful to find something to help ground you in the moment. This could be a physical item such as a small trinket in your pocket that you can hold, squeeze, and focus on in your hand, or it can be through positive mental imagery, deep breathing, and/or stress relieving acupressure, etc.
Take deep breaths – practicing deep breathing can help reduce stress and can increase resiliency during highly emotional or stressful situations.
If things don’t go as planned, that is okay – grief is a process with no timelines or set of rules, and sometimes things do not always go the way we plan and that is okay. Allow yourself time, patience, and understanding while you adapt to living with your unique grief experience.
By Taylor Bourassa, RP & Professional Art Therapist.
Losing a loved one –whether through death or the end of a relationship, brings up complex emotions, some of which are hard to process. The first major loss I can remember experiencing was when I was quite young and my grandfather died. I barely knew the man, but to this day we still share stories of his impact on my father, his son, my mother, his daughter-in-law, and us, his grandchildren. The memories bubble up slowly and play in my mind like a distorted movie playing on the television screen. It is part of my life I can’t quite recollect without the input of others. Then in my middle teen years I attended a funeral for my grandmother’s sister, and I remember watching the grief flood my grandmother’s face as she dissolved into tears and I wondered: how can I, or any one else hold this grief in the “right” way? How can any of us help ease that pain?
When I was 16 or 17, my cat, who I still recognize as my earliest best friend, developed cancer and needed to be put down. This was the hardest thing I had had to face at that point in my young life. I was faced with what seemed to be inconsolable grief. That same thought bubbled up: how can anyone ease this unbearable pain?
A few years ago I was faced again with the reality of our mortality on this planet Earth when my dog, Roxy, had to be put down due to ailing health and decline. That same question flitted through my mind. Now, at 29, and having faced multiple losses and deaths I finally have some semblance of an answer to that question. It isn’t straightforward, and it probably isn’t universal. But it feels appropriate for me: remember, honour and celebrate. The pain of these losses will more than likely be with me my entire life, until the day I die and pass the pain onto my loved ones left behind. So long as I remember the lives of those I have lost, honour their presence and impact on me and celebrate their spirit, they will continue to live with me and the pain will feel bearable. It will no longer stop me in my tracks. Instead, it will encourage me and propel me forward through the transmutation of that grief into something different, something more nuanced and fluid. I’d like to share a practice for processing grief which I have found to be especially helpful.
Reflect on person or pet that has passed on and write a letter to them. Use recycled, bio-degradable paper to write this letter, so that when you get to the end of this invitation and you plant your letter it will be taken back into the earth and soil.
Imagine the things you appreciate about this person, the memories you two share, the impact they have had on you, and anything you feel has been left unsaid or unexpressed while they were still living. Before you close and seal the letter, read it back to yourself and sit with whatever memories, feelings and thoughts come up. Allow the energy of this person to show up and sit with that felt sense of who they were. When you are ready, fill the envelope with your letter and the seeds of your choice: flowers, fruits or vegetables. Use the seeds which you feel best honours the person. Find a location that is both accessible to you and reflects a space of honouring and celebration. This may be a favourite shared space between the two of you, or a new spot you would like to crop out as a way to honour and remember them. Once you have found your spot, take your letter and your seeds and bury them in this spot. Eventually, the seeds you have planted will sprout and grow, changing the spot into a new gravesite garden. Soon, the biodegradable letter will also be gone, subsumed back into the womb of the earth and soil, feeding the land for the growth and propagation of the flowers you have planted. Maybe these flowers will remain only in the space you created, or, what is more likely, they will be spread on the wind and the legs of bees, and the beaks of birds until the grass beneath is forever changed, peppered with new and continuing growth.
What a beautiful way to honour the deceased: recognizing their continued impact on you and the world around you as they and their memory connects with and returns to the earth. I find this to be a helpful way to process my own grief because it allows me an embodied, tangible and somatic way of addressing, honouring and processing the grief held inside my body. The grief will always be there in some capacity, and now there is a space which I can visit and reflect. The heaviness and weight of the grief is no longer mine alone – the whole earth helps me to carry it. Grief is such a unique, yet universal experience. My own experiencing of grief is all I know for certain, and so I keep searching for answers. I hope that as you navigate your own grief, you can alleviate some of the weight by sharing the load with the natural world around you.
Susan – “My story”
Susan talks about her story and her decision to stop chemotherapy.
Susan – “Bearing Witness”
Susan discusses why it’s OK to talk about death and how you want to die.
Susan – “Celebration”
Susan discuss her thoughts on why the process of dying shouldn’t be clinical.
Susan – “Diagnosis”
Susan discusses her diagnosis and her process of dealing with it.
Susan – “Honour”
Susan discusses dying and lives well lived.