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Hope Has a Name

My Chronic Illness As Grief. Disability As Hope.

_BLOG DU BIEN-ÊTRE / Hope Has a Name

Most days, before I even open my eyes, I can feel the body betrayal; the waiting for my brain to come back online and remember how to move my arms and legs, the joint inflammation that feels like blisters are forming between my cartilage. I wake up feeling like I have the worst hangover of my life mixed with the flu. I blink my eyes repeatedly because they cannot focus themselves the first time they open. As if during the night, they were knocked crooked in my head. Putting my feet onto the floor causes pain to shoot up my feet and legs like someone has hooked a car battery up to my toes. Many mornings my body temperature has risen so high I am sweating. If I am not careful, it causes me to pass out.

The most common piece of medical advice I am given is, “find what helps you and do that.” I stagger between wanting to find the right care team and becoming too exhausted. My chronic illness and disabilities include mental illness, making it harder for medical staff to see my physical conditions. They can see the medical history of suicide attempts, psychiatric hospital stays, residential treatment for an eating disorder, and decades of therapy.

A neurologist has told me my traumatic brain injury was “all in my head.” He meant my mental illness was creating an imaginary problem. I have chosen to see the humor in being told brain damage is “all in my head.” The first time I saw a rheumatologist, I was asked repeatedly why I was no longer on psychiatric medications, why I no longer saw a psychiatrist, and who made both of those decisions. Every time I get new medical care, it is suggested I go on anti-anxiety medication.

Disability is a gift that has been given to me.

I have ‘invisible’ and dynamic conditions. They are invisible only if someone is not paying attention as my speech slows down while I search for or forget words. They are invisible only if someone does not see my lack of coordination. They are dynamic because some days, I can almost trick myself and everyone around me into believing I am like them. Like I have more than three good hours in the day. I look “fine,” so it is assumed I am fine. My bloodwork looks fine, so it is assumed I am fine.

I know what many others like me know: Illness starts long before the medical field gives it a name.

There is a heaviness that comes with knowing your life will never be the same. Emotional fatigue comes with being chronically ill, knowing you cannot gratitude, yoga, or rest your way to the life you want. Its name is grief.

Chronic illness is the daily grief of the life I once thought I was going to have. It is not showering for days because I have too many things to get done. The toll required to maintain personal hygiene increases, and I do not have the energetic funds.

There are days I can string together that make me believe I am ‘fine’. So fine that I start to believe what I have been told most often; it has always been a mental illness issue. Some days I convince myself that my mental illness is making up the rest of the illnesses. Some days, I convince myself I just want to be included in something much bigger than myself, so I made up being sick. Then a Zoom call knocks me down for weeks.

Chronic illness is grieving the idea that I will be able to do life the same as anyone else. If I want to engage in an activity, I must schedule days of rest after. It is the grief of knowing that I will lose friends because they only see me at my best, not when I am repairing. It is uncertain in its outcome. Uneven in its symptoms. Cruel in its ability to turn ableism on myself. I am angry for the things I have lost, depressed when I compare myself to the past and future versions of me.

I have turned my body into a revolutionary act by refusing to accept that I am not enough.

I am also disabled. I have become empowered with this knowledge. I have found a community and an identity. I have found organizations to be involved with, people to learn from, books to read, a movement I belong to.

Twitter has opened what still feels like unimaginable doors for me. I joined the Disability Coalition for the Biden/Harris campaign. I sit on the board for a nonprofit called Stigma Fighters and the mental health committee for The National Council on Independent Living. I have published a book and now help others do the same. I am involved with a global project archiving the stories of disabled and chronically ill people during COVID. I have been asked to help companies with their disability diversity. All of this started on Twitter.

I try and listen more than I speak. I try and learn more than I try and teach from people like Alice Wong and the Disability Visibility Project, Brianne Benness and the #NEISVoid, and most importantly, the two people who started me on this journey, Imani Barbarin and Matthew Cortland. Because of them, I began to learn about what it means to belong in the disability community. It is because of them that I learned what it means to takes action. Twitter is such a strange and beautiful place. These people, and many others, have been instrumental in creating the most current version of me, yet I have never met them. Not only have I never met them, but I’m also not sure any one of them knows who I am, proof of how strangely beautiful and powerful one person’s existence can be on someone they haven’t even met.

In a world that has so often told me I do not belong, I should not survive; in a head that so often has told me I do not belong, I should not survive, I have found my place to belong with people helping me to survive. Disabled is not a bad word, and neither am I. Disability is a gift that has been given to me. It is the fight inside of me in a world that would rather hide everything different from it.

I have turned my own body into a revolutionary act by refusing to accept that I am not enough. Being disabled has given me that. I meet my needs when and how I need them to be met. This isn’t always easy. I am still learning, and sometimes I lose the fight against my internalized ableism. Some days, the desire to be liked and fit in still wins. Some days and more often, instead of bending to how the world wants me to look and act, I tell them to wait, to be patient, slow down, meet me where I am instead of meeting them where they are.

In a world that assumes everyone wants to function in the same way, it is an act of revolution to tell them you want to be yourself. It is a political protest to declare yourself whole instead of in need of a savior. If no one will make space at the table, I will build a different house. If no one will make space at the table, I will build a different world. I am built of and from tiny acts of revolution

Hope is the final stage of grief. I am naming hope Disabled.



If you are in crisis or are experiencing difficult or suicidal thoughts, call the National Suicide Hotline at 1-800-273 TALK (8255) or you can also text NAMI to 741-741 to be connected to a free, trained crisis counselor on the Crisis Text Line.
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