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Chronic Illness and Disability: Living With a Long-Term Diagnosis
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Chronic Illness and Disability: Living With a Long-Term Diagnosis

For those of us living with (and taking care of) people living with brain tumors, cancers and other diseases that become chronic, life's challenges begin to shift, as do our outlooks. It is important for us to be able to love our bodies, our disabilities, and for the world to make space for all sorts of bodies to exist.
PUBLISHED April 27, 2018
Samira Rajabi was diagnosed with a vestibular schwannoma, also known as an acoustic neuroma in 2012. She has had ten surgeries to deal with her tumor and its various side effects. She writes a blog about her life, surgeries, recovery and experiences at LivingWithHerbert.com. She is currently a post-doctoral fellow at the Center for Advanced Research in Global Communication at the University of Pennsylvania, where she studies media studies. In her spare time she plays with her two pups and spends time with her husband exploring Philadelphia.
There are moments that are particularly humbling throughout the course of life. One of those came recently for me. As a person who had long been a patient and needed help eating, moving and bathing after each of my grueling surgeries, I never really stopped to contemplate what it would be like to help others do the same.

Someone very close to me has breast cancer. I don't call her sick because she is not sick, she just has breast cancer. But she needs some assistance in the days since her double mastectomy, just as I needed some help after my brain surgeries. I was not humbled by helping her, I was humbled because of how pride works, how we are made to swell with pride for some things and humble ourselves to ask for help for other things.

In our society we define what we are proud of based on embodied boundaries around what is normal and what is abnormal. We build a world only accessible to those with all of their abilities intact. We fill our homes with stairs for those who can walk. We fill our public spaces with music for those who can hear. We place our menus high up on walls for people who can see. We structure our daily lives around those who can work, our virility a definition of our eligibility to be a part of society. As all of us get older and calamity befalls us, we lose some of those abilities and the world slowly becomes less accessible to us. For some they fight back, using their disability as a way into activism. Others retreat from the world – a world unwelcoming to them is not a world they want to be a part of.

I have come to understand chronic illness as a disability that sets one apart from normal. The accommodations I, or someone in my position, need are not ones this world readily makes available. Asking for help is shrouded in complicated feelings of shame, self-effacement, and pain. We are forced to humble ourselves because our pride, our egos and our bodies are defined against an arbitrary and constructed notion of normal. My body is not "normal." It cannot hear from one side. It wobbles when it is tired. It fatigues too fast. Yet, I try to keep up, to walk alongside my contemporaries, sometimes naming my challenges for them, sometimes hiding them deep within me, pretending to hear, pretending the fatigue slowly dripping over my whole body is just me being weak. I negotiate this boundary so well, I don't even think about it much anymore, the concessions I make on weekends to get through the week are almost second nature to me.

It's different though, when I see someone I love having to negotiate a world not set up for those whose bodies need a little support. She can't use her arms to pull doors, she cannot lift more than a coffee mug, she cannot lift her arms over her head. This means that this independent and radiant soul cannot fly freely, but must discipline her body, sit still, stop working, not make dinner for her family and let people take care of her. And yes, there are merits to allowing people's kindness. I can attest to the fact that it is life-giving to feel genuine and true love from those around you as they lift you up and will you to survive. But our world tells us we need to do so much, we need to work, we need to move, we need to be able. And when we can't we are relegated to the corners, left out, set aside, made lonely in our isolation, isolated by the limitations of our bodies in a world not ready to acknowledge the frailty of the human form, so willing to acknowledge our suffering.

Though it would be incredible if we could modify our everyday existence to make every circumstance of illness easier, that is perhaps a tall order in the present world. It would be great if we were able to do such a monumental task, but what we can do in the everyday is to look hard at ourselves, at the ways we force people just like us out of social life because seeing them, acknowledging them, and allowing them to be part of what is normal is too hard for us, too confronting. We must face the tragedy of life, that we will all perish from this world, as not a tragedy but a reality. We must see each other and make space for each other in all the ways we come. In so doing we will improve the lives of many, in fact, I believe we will improve all our lives.

My disabilities are a reminder that no body is perfect, infallible, or unbreakable. Rather than run from that reminder, we should honor the body I have left, and all that I can offer the world in it. I won't let my loved one be relegated to the world of the "sick" when her spirit, her body, her life are all so radiant.
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