jessingrassellino

Author: 54752785

  • Ableist Against Myself

    I have been chronically ill for 12 years. Even though I’ve cohabitated with my body in varying stages of “physically broken” during this time, I struggled, and still do, to feel comfortable using assistance I need when I need it. Yes, I encourage others to ask for accommodation. Yes, I help my friends and co-workers get what they need. Yes, I create safe spaces for people to speak about their mental and physical health struggles. Even with all of this I do for others, I actively discourage and delay myself in asking for assistance when I need it.

    Internalized ableism is insidious

    You see, internalized ableism is insidious. Like other “isms”, it creeps in through our media, social norms, and values. I’ve learned throughout my life to feel that if I am not capable of accomplishing, that I am fundamentally not worthy. Of love, of care, of basic dignity. Even though I do not believe this is true – I believe strongly that basic human rights are human RIGHTS – when it comes to my own existence and ability, I don’t afford myself the same consideration.

    The most clear way this shows up for me is any time my invisible disability makes itself visible. I work from home, so I can hide most of my daily struggles. Further, with new and better treatment for Ankylosing Spondylitis, I experience symptoms that are far less frequent, and generally much less intense. So, when I do need a mobility aid (for example, forearm crutches or airport travel assistance), I feel like I should “just be able to do things” or “power through it”. Even though I know that using mobility aids in difficult times leads to substantially better outcomes, I wrestle with the necessity – do I really have to show people my weakness? Why can’t I just keep hiding, and then suffer later, in private?

    Of course, now that life is opening up again (post-pandemic, vaccinations more available), now that I can meet people and travel again, all of these issues I’ve been able to avoid for the past year resurface. As I am meeting new people and developing new relationships, it is simultaneously exciting to have so much more ability (because medication) and also terrifying when that comes to a screeching halt (because, disability doesn’t end where meds begin). I’m facing my own feelings and judgements about my own ability. And I know that they are my own, because the people in my life have always been supportive of me, and have encouraged me to do what is most helpful for my health and life.

    I’m not sure how long it will take me to overcome these feelings. To accept that I have a disability that is attacking my body, that will not always be 100% fixed by medication, that will require me to ask for and receive assistance. I’m not sure that I’ll ever feel “normal” when I need my mobility aids, even though I understand logically that they are the best choice for my body and future health.

    I’m not sure I’ll ever feel comfortable, and that in itself is ableism and privilege. The discomfort I feel is ableism; the privilege is that I can frequently hide and avoid the ableism I may experience from others, or more often place on myself. I don’t understand why I am okay with others doing what they need to do to help themselves, but I struggle so much when applying the same rules to myself, and I know this is something I need to unlearn. And I wonder, do other people feel this way about themselves? Do others experience this fractured relationship of logic and feeling when they differentiate between their own needs and the needs of others?



  • Reading the world, slowly

    Back in 2015, I had my final inpatient mental hospitalization. That May, I’d experienced the first break-up of my second marriage. I was hurt beyond imagination – we both were. Then there were dramas with my family. Summer of 2015 hit me hard, and I was unsure if I could tolerate my own hopelessness and grief. 

    So unsure, that I drove myself to the hospital for help. I spent the next two August weeks with a small pile of books and a roommate who was an art student, ten years younger; the thing I remember about her is telling crazy stories about my childhood and my life and teaching, and the two of us laughing so hard at midnight that the nursing staff banged on our door to tell us to shut up. I spent time thinking about how to reconnect with my purpose of being.

    At some point during those weeks, I committed to dive head-first into becoming a better human. I embraced my curiosity as a lease on life. as the thing that could save me from being swallowed by my own small mind. 

    When I got home from that last stay, I did two things: I got my tattoo, and I started thinking about making meaning in my life. I started reading more blogs from different writers. I don’t recall where on the internet I found this blog about one woman’s mission to Read the World in year, but it struck me then as such a profound way to experience the vastness of the world, and the beauty. I decided I would read the world, but, slowly.  Starting with the books I already owned (yes, book collector for life!), I began reading and learning from voices and perspectives and stories that so differed from my own. 

    As I read a story, book, essay, or poem from an author in one country, I’d make notes in my journal, and write short reviews of the experience. Through a series of unfortunate technical fails, the blog content was lost in 2016. All I have remaining from the reading and writing I did during that year is a google sheet where I tracked authors and books from each country, and the status of my reading. A checklist. I was so frustrated that I left the project behind not long after (I think maybe I updated the spreadsheet once in the past 5 years). 

    Until recently, I had all but forgotten this project, and its origins in my life. Opening that spreadsheet with its checklist, I remembered the awe I felt when first compiling it. So many countries, so many histories, and so many stories that exist, and for each of those, multitudes that will never be told. 

    In a way, I’m glad I forgot about this, because when I started it, it was probably more “goal oriented” than it should have been. Remembering anew has caused a desire in me to dig into stories, to learn from this world that has felt so inaccessible this past year. And now, six years after that hot August hospital stay, I have so many better questions to ask the stories.

  • The Gate (Nooner)

    This poem is after a close reading of the poem The Storm (Bear), by Mary Oliver. I focused intentionally on attempting to replicate the rhythm and meter Oliver chose, as well as other grammatical choices she made, such as tense and sentence structure. Find the poem and my close reading below

    The Gate (Nooner)

    New upon the shaky gate my kitten
        climbs, crying determined mews
        with new confidence.

    Spine and tail, wriggling, anxious,
        her view of the top, she claws, grasps
    Until the gate’s cloth divider freys
        in small, delicate pieces,
        An early warning foreshadowing
        the struggles of my mind in this world.

    You know, I didn’t see it coming myself.

    Close Reading and Notes


    Reading Mary Oliver’s original poem The Storm (Bear) and working from it caught me by surprise, because in my first reading, it seemed simple. That simplicity is deceptive upon closer reading. As I worked to tell the story of my kitten, Nooner, I noticed that Oliver’s poem’s simplicity was quite intentional and well-crafted.

    Oliver sets up the reader with the scene, setting, and details, using familiar and causal language that make it easy to connect with a scene between animal and human. In the second stanza, Oliver expands on the narrative set in the first, connecting the verb in the first stanza to the three parts of the second stanza.

    The first part of the second stanza, Oliver describes and expands on the verb; in the second part, she reveals the ending or aftermath of the action/verb; in the third section, she uses metaphor to relate the experience of the animal in that moment to the human experience. In Oliver’s poem, she uses the following as the third section of the second stanza:

         a long sentence, expressing
         the pleasures of the body in this world

    In the third stanza, she responds to the metaphor she has expressed with her own voice and feelings on the matter.

    Normally, I try to use the overall tone, grammar choices, and narrative structure of a work as a guide to my study, but it felt important for me to discover how Oliver crafted such a beautiful work that resonated with clarity and beauty, leaving the reader with feelings both simple and profound. I’m glad I spent time with this poem and worked to attempt to understand how Oliver constructed such a poem. I enjoyed this week’s etude, and I hope you enjoy Mary Oliver’s poem, as well as my own attempts to learn from her work.

  • Coping Ahead: What to do when you feel like you can’t do anything

    This post is about my personal experience with physical health problems, and does not necessarily reflect the unique needs of other individuals with similar issues.

    I have fibromyalgia, arthritis, and a body that doesn’t cooperate with me as much as I’d like. At the same time, I work a full time job and run my own small business, while maintaining as active a lifestyle as I can manage. First of all, everyone is different. There are days where I actually, literally, cannot move. For some people with fibromyalgia or other similar illnesses, this is most days. Many people ask me how I manage full-time physical health problems while I manage my other responsibilities. The short answer is a skill called “Coping Ahead”. A lot of people do may use this skill without realizing it (including my grandmother, who suffers with several of the same conditions I do). Coping ahead is skill that almost anyone with fibromyalgia or a similar illness can use to help themselves on their worst days.

    So, what is coping ahead? The “cope ahead” strategy is used in Dialectical Behavioral Therapy work to help people prepare themselves for situations that make them emotionally or mentally uncomfortable. So, for example, if I have to have an uncomfortable conversation with a client or a supervisor, I can cope ahead by thinking about my key points, anticipating sticky responses, and thinking of ways to respond to pushback while maintaining my points and my values. I don’t know how the other person will respond to the conversation, but preparing my response and can help me stay focused and achieve a mutually beneficial outcome from a potentially difficult interaction.

    I’ve found that coping ahead is also extremely useful as I manage an unpredictable physical problem like fibromyalgia. People with illnesses like fibromyalgia can often find the unpredictability of symptoms very physically, emotionally, and mentally disruptive. During the first year before my diagnosis, I was constantly frustrated and angry, as I couldn’t plan sometimes even an hour in advance. I didn’t know what my body would decide to from one moment to the next. At the same time, I was working full time and taking 15 credits a semester for my masters degree. Every unexpected turn caused me turmoil.

    Over time (when I say time, I mean years), I’ve discovered different strategies to help me cope with my fickle body. I’ve always been a list-maker and planner. Yet, on a “foggy” fibro day, sometimes I have difficulty to even find the words I need to finish a sentence. Thinking clearly enough to make a list is sometimes not an option. That doesn’t make working, paying bills, or doing household tasks easy. To cope ahead for the inevitable “fibro fog”, I use a strategy similar to the epic/story/task strategy in software development. In my planner (I use GoodNotes on my ipad for this kind of planning), I have a notebook for everything that I need to do to make my life work: house, bills, teaching, writing, job, business, etc. In each of those notebooks, I have a list of projects. Each project gets one page. Some of the projects seem like silly things to make a checklist for – say, cleaning the closet, or making flashcards. But I do make task lists for each project, and sometimes I break it down further with subtasks if the task is complex.

    Frequently, I can go through my day without referencing my planner. However, on a mental “fibro” day, it can be difficult for me to even decide where to start on my to-do list. On those days, I can check my planner and use my planning from the good days to help set me on autopilot for bad ones. I have coped ahead for what otherwise can be distressing, and this strategy has helped me so many times!

    From a physical standpoint, coping ahead means traveling with mobility aids, so that when my body decides to quit, I am prepared to deal with the aftermath. For a long, LONG, long time, I wouldn’t use mobility aids at all. After my friend and co-worker Cori pointed out that I needn’t feel shame for using mobility aids, I began to carry them with me, and to request assistance for long-distance travel. The direct result was much more ease and comfort during the trip, with far fewer symptoms once I arrived at my destination. There are a lot of reasons I was stubborn about coping ahead this way, ranging from external judgements, to my own internalized sense of ableism telling me that I “should” be able to do everything on my own. By making the decision to work on my shame and overcome the ableist thoughts in my head, I have been able to cope ahead successfully, and travel changed for the better. Even today, when I need to use mobility aids for shopping or moving around my building, I sometimes feel the twinge of shame, but when I am not in pain and can walk for extended periods of time, it reminds me that coping ahead with my mobility aids is helpful, and that my shame is not justified.

    This is my experience using coping ahead as a strategy for physical health issues. I have also used it to help me face difficult conversations, or even anxiety around potentially stressful interactions. If you have times where you feel that you have high anxiety around an unpredictable physical, emotional, or mental situation, I recommend using the cope ahead skill to help ease the stress. You can learn more about what the skill is, and isn’t, at the following:

    Educational Psychologist Sue writes about using Cope Ahead strategies to work with her disability, Macular Degeneration

    Kim Sullivan Cope Ahead Video