Since I received the diagnosis of my disease, transverse myelitis, I have been thrust into an alternate physical dimension.
I remember the exact moment when I knew something was direly, direly wrong as if a switch on my old body had flipped into “sick mode.”
I was naive enough not to have panicked as I should have. I live with a disease whose symptoms mirror the state of health I should “enjoy” as a functioning survivor of a spinal tumor thanks to the lesion on my thoracic spine. It makes my body buzz as if someone rather inconsiderate has plugged me into a socket, and it kills the messages to my feet and legs, so they feel as though they’ve been asleep for 20 minutes within seconds (a very bad idea when standing upright!) It ices my throat, steals my breath, puts my head into a whirl, and some days it sucks at my very marrow to keep going.
I had to leave my job and restart my own company out of my house to accommodate my new needs. Every relationship with anyone or anything went under the microscope. I spent a lot of time crying, raging, pushing people away, hiding, feeling guilty, bargaining with God, reassessing, praying, begging and in my darkest moments, preparing myself mentally to die. Yes, the five stages of grief can occur when what has died isn’t a person, but a version of yourself.
I took meds, went to PT and saw specialists who didn’t have enough experience to treat me. My case was mishandled. I was belittled and told to take mind-altering drugs because I had anxiety. You think?
Through this journey, I have come to a place where I have accepted that this is probably as good as it’s going to get. More importantly, I am OK with that. I am OK with being sick and being walloped with fatigue out of the blue in the middle of a productive day.
I actually love working for myself and building something of my own making. I am OK with being wheeled around on my tough days when my feet can’t slide even one step further. I’m OK with being carried around the house Yoda-style by my gift-from-the-universe fiancé (update: husband). 😀
I am OK with spending more time in relaxed positions as I work. I am OK with not driving as much, with the culling of my friends’ list, with choosing to work with people who understand and don’t think less of me, with embracing chronic mysterious pain and stabbing muscle spasms (and trying not to overthink their cause)!
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I am OK with it all. The weird has become the expected.
So, please stop telling me I am going to get better.
I don’t need to hear it.
Because I don’t need to hear it, don’t say it.
You say it for yourself to somehow make being with me OK for you or that someday I will become acceptable again.
Sometimes it seems to me that people with chronic illnesses and disabilities are largely excused from the human race. Whenever I am in a wheelchair at Target, shoppers either react in one of two ways: completely ignoring me with a side eye sweep over my body as if to quickly assess why I am sitting in the chair or over engagement as if I need reassurance that I am still a viable member of the human race just because I remain seated among walkers.
I know I am viable. Because I say so. Because I feel it. Because I have done the work in my heart to get there. It was the most grueling experience I have ever undergone, but I wouldn’t change it. Because I love me more.
I am a fighter, but I didn’t know how strong I could be.
I am unfailingly positive, but I didn’t know I had such a bright spirit. I am a collaborator, a lifter, a gifter, a lover at my base, and I had no idea what loving myself could do for others who are also facing challenges.
The realization has dawned on me that society has a lot more work to do to accept people who look differently or live with disfiguring diseases, but it has much farther to go unraveling stereotypes of people who are ill but appear smashing on the outside!
We can’t help it that we make our graphic tees look amazing!
My worth isn’t measured by my physical stamina, how many steps I can take without stumbling or by the nerve sensations I am subject to and can’t control. It is measured by me and how I feel about myself—just as I am, whether I walk or stand. When you tell me it will get better or that I have to try this magical potion or that secret cure, it sets me back.
It makes me think you believe I don’t want to get better, and I am giving up.
But I’m not.
No one else is privy to my journey. No one else has the intimate knowledge of the condition of my body that I live every waking moment. I am doing the best for myself that I can as a real person. I am proud of me. I don’t need to be anyone else in order to be good enough. I don’t need the blessing of another person’s acceptance. Because even though I am weaker in body, I am stronger than I ever imagined I could be in essence.
I don’t want to change that.
I don’t want to be pre-diagnosis me, non-vulnerable me.
The knowledge my disease has given me is a blessing as odd as it is to say. I won’t pretend it doesn’t exist or that I can erase my experience. I refuse to squander it. Sometimes things happen for a reason, and sometimes they don’t, but at the end of the day, if you are satisfied with who you are and where you are going, then you never need to step backward for someone else’s comfort.
The reality might be that you will never return to pre-diagnosis health. But as long as you are OK with it, the rest of the world should be OK, too.
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Original article appeared on The Mighty1and is republished on Medium.
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About Hilary Lauren Jastram
Freelance Minnesota writer, author and die-hard word nerd, Hilary Lauren Jastram reads grammatical reference books in her spare time.
She is the author of Killing Karl, a story about a career killer masquerading as an everyday man, and his wife trying desperately to live in denial. She also operates J. Hill Marketing, a business specializing in digital media, copywriting and editorial services.
Her second book, Sick Success: The Entrepreneur's Prescription to Turning Pain into Purpose and Profit is on Amazon.
She cannot stop writing. She simply has no control over love. And that is what writing is … love. Like any other kind of passion.
