I was starting to notice a range of interesting reactions from people.
As I started trying to settle into being this ‘ill’ person, I decided it was necessary to tell a few more people. I would prefer they know than perhaps think I was drunk or worse.
I didn’t know what I expected. I supposed I hadn’t thought beyond making people aware of my recent limitations. I didn’t like letting people down and wanted to communicate with the people whose expectations I thought I had failed or might fail to meet, that there were valid reasons for those failures.
I had already come abruptly face to face with quite an awkward reaction from an extended family member.
The day after being diagnosed, when I was still unmedicated and waiting for more tests, I met up with family. It was right before Christmas and there were twinkly lights everywhere, causing my eyes to blur badly and try to close. One family member was holding my arm and literally leading me around like the blind. I was led towards another family member and told who they were because I couldn’t distinguish their facial features until I was right in front of them. As we stopped before them, and I greeted them, they wouldn’t look at me. No eye contact whatsoever. They instantly turned without speaking to me, and started walking a few feet in front towards the coffee shop we were heading to.
I knew instinctively that this person was so uncomfortable with my illness that they could find no words to say to me. They were almost squirming with discomfort. I think they would have avoided me entirely if it had been an option.
My initial reaction was to feel a little outraged, hurt even. But I knew that succumbing to those feelings would only alienate, and this important relationship might not be able to take the strain. So, taking a deep breath I put aside my ego’s response. After being led to a table, I made sure that I was left alone with this person who didn’t know how to talk to me anymore.
I looked them in the eye (squinted up past my half closed eyelids, actually), and said,
So, I guess *Sarah told you about my diagnosis? Isn’t it just the shittiest news to get right before Christmas!
I supposed he imagined I’d be emotional and devastated, and had no idea how to deal with that. Hearing me being my usual blunt, no bullshit self, caught him off guard. He looked at me then. We had an almost normal conversation. But for the first time I contemplated how this must be challenging for my family too.
Part of me reacted selfishly. I wanted to stamp my feet, put my hands on my hips and screech at them all;
This isn’t fucking happening to you! You think this makes you feel anxious? You reckon you’re scared? I can guarantee, you are NOT more terrified about it than I am.
Another bit of me empathised. Some of my family had been through terrible tragedy and bereavement over the last few years. If I could take from them any fear they had that I might die of this, I would.
A couple of weeks later, I heard from another distant, related by romantic relationship, sort of family member. We didn’t speak often. She wanted someone to listen to her, and politely asked how I was first. I, assuming she knew something about what was going on, gave her a swift update. She responded thusly…
Oh. I don’t know what to say to you now. Sorry.
I let her off the hook. Told her it didn’t matter, and changed the subject rapidly to talk about the real reason she’d called me, we got onto talking about things she was at ease with. Her.
It was as if my blinkers had fallen off. I became aware of other odd reactions. Hypersensitive, some might say.
One of my closest loved ones completely refused to learn anything about myasthenia. Totally and absolutely did not want to know. This person is not quite literally standing in front of me with their fingers in their eyes singing “La la la, I can’t hear you!” 🎶
I was torn between sympathy for them and frustration with them.
I felt compelled to protect them.
But every now and then I also felt an almost irresistible urge to shock them into reality. To recite some facts about MG, tell them that the next time I got breathless simply from walking slowly down a flat street, they might need to call an ambulance, have me admitted to hospital and put on a ventilator until intervention treatment restored normal breathing.
I had fleeting moments when my positivity faded, and wondered if my ability to appear upbeat was what deceived them into thinking this wasn’t so serious after all.
Reflecting on the last three months since MG invaded my life and tried to conquer my body, I marveled that I’d only been reduced to tears two or maybe three times. Partly this was because I was afraid to let it overwhelm me. Frightened that the emotion would cause an exacerbation of symptoms. But mostly it was because I refused to be beaten.
And the rare occasions I had leaked a little of my reality over someone close…
You really do need to try being more positive
Really? Do you think so?
I truly did not know how I contained myself. The ice cold rage.
How. Fucking. Dare. They.
Ok then. All I have to say to the well meaning, those that deny my truth?
That thing you’re thinking? It cannot be as bad as the things I’m feeling.
Not remotely close.
*name changed for the sake of anonymity