I’m in the storage loft searching for an old dry bag we used to have. We are driving out to the coast for a vacation, just the two of us. The tiny home we rented boasts a 2 person kayak and I am eager to try some gentle paddling in the harbor. I know my partner will be there to back up my disabled butt and my probable stroke rate of 3 per minute… The dry sack might come in handy, if I can find it. I finally come across the oversized, blue bin from my past life. It’s where I have kept my sports equipment stored for over a…

Part 2/2 Learning to make a home began within myself. Because my vision for home is as a refuge, it is a safe place for joy and grief; for self-expression; for learning and for resting. It is a place to build core memories. Home is where I have room to heal and recover, to grow, and to just simply be – without all the busy of doing. You cannot truly build such an authentic home with your life and yourself without knowing and loving who you are. Despite having few adults in my life capable of modeling this self-discovery, soon after I finished school and moved west – aka had…

Part 1 of 2 I recently borrowed Jeremiah Brent’s book from the library. The Space That Keeps You: When Home Becomes A Love Story is a collection of stories and photos on what makes a home and what that means to people. Brent is a designer I have long admired – for his work (sometimes along with his husband, Nate Berkus), but also for how he expresses his ideas and connects with people. In any show I have watched him in, he seems genuinely moved by people, their stories, and the meaning their spaces have. The love and care he holds for the concept of home resonates deeply with me,…

Final post of three-part series on relationships and needs in my chronic illness/disability context I initially planned to write on the frustration, internalized ableism, and guilt that comes with having less capacity to support and care for my spouse. It is true – I have less energy to offer and I need more support for caring for myself and accessing the world. My needs have become more in number and in complexity. The balance of needs in our relationship is not 50/50. To turn ableism on it’s head, though: it is actually okay to have an imbalance of needs.

Part Two of a series on relationships and needs in my chronic illness/disability context From 2012-2021, I worked as a Physiotherapist in acute care – with people admitted to hospital. I worked outside the home 5 days per week, and sometimes more with our weekend and evening rotation. In contrast, my spouse has worked from home for over 20 years. Long ago, he converted a bedroom into his home office and built his business, and his writing and justice work. Up until 2021, the house was quiet when he needed it to be. Or, it was loud with meetings, calls, or music at his discretion. His daily routine was secured…

Part One of a series on relationships and needs in my chronic illness/disability context. Ableism erases our stories and distracts from our truths. It causes disconnection. And disabled people are just as capable of perpetuating this. My own ableism can show up as guilt and shame for having needs in my marriage. One way to dismantle this is by learning how to name, process, and examine these difficult emotions; which are skills most of us have not been taught and are actively teaching ourselves in adulthood. I do not want to contribute to the noise (ableism) that obfuscates both my own and my spouse’s experiences with chronic illness and disability.…

*based on a real 2024 journal entry Acceptance is my way forward. I am finally moving. I do not have to wait for them to change. For them to come along with me. I might be waiting forever. I won’t wait forever. It all holds new meaning under different light. For the first time in decades, I am quieted. I settle into my body. I feel stillness, assurance. I see the path before me, bare in its blooming truth: grief and uncertainty are ahead; peace, wholeness, and love are, too. Pain does not cause me to turn back. I know the way to the other side – the way out…

I have survived too many hard things in this life. It’s not fair and some days are too hard. Allowing myself to feel that doesn’t make this a pity party, but I often wonder how I keep on surviving this world that tries to kill me (especially one unapologetically killing chronically ill and disabled people in a pandemic.) I keep on surviving because of privilege and luck, and also the ways I never fully abandoned who I am. I could never fully conform to external expectations.

Keeping up with writing, or any form of creativity, can be really challenging when you live with chronic illness. For me, fatigue and cognitive dysfunction are common barriers to doing what I’d like to or planned to do on any given day. But adapting and learning to live well with these symptoms also means I can let them point me in a new direction. A way that is less perfectionist and excellence focused; less consistency dominated; and operates on disabled/Crip timelines, instead. Simply put: it’s about access! Adjusting to living with acquired illness and disability means adjusting how I view my needs and limits. And also how I define success.…