I’m living with disability, but I’m still more than ‘the things I cannot do’

Last week, I was asked to respond to “Tell me about yourself” as it related to my disabilities and the help I needed around the house. The request came during an intake meeting to have an outside caregiving company come in to help my husband and me. Even though I knew why I was being asked this, it was still very depressing and disheartening to have to remind myself of all the things I cannot do.

I can’t walk up and down the stairs more than twice a day because of weakness from myasthenia gravis. That means laundry falls on my husband’s shoulders because the washer and dryer are in the basement.

I average about 2,000 steps a day, 3,000 on a good day. So grocery shopping or running errands are also not tasks I can do.

I’m unable to grip anything for long without experiencing hand contractures. Washing dishes, cleaning the toilet, and baking or cooking anything that requires frequent or prolonged stirring are no-gos.

I can’t cook on the stove safely because I’ve lost sensation in my fingertips and can’t tell how hot something is. That’s probably from neuropathy, but my care team is still trying to figure this one out.

It’s not safe for me to shower if I’m home alone because of my seizure disorder. That’s not to mention the difficulty I have washing my hair and reaching my back because of arm and hand weakness — also related to myasthenia gravis.

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So it was a lot to be asked to be that vulnerable about all the things I’m unable to do.

But that’s why we agreed to have that meeting and bring outside help in. Not just for me, but for my husband. He has shouldered the brunt of the household duties; plus, he serves as my caregiver while working for someone else and opening his own gym in our community. And he does it all with just a slight grumble.

There’s so much that I can do because my husband has always encouraged me to pursue my passions, enabling me to live my best life. He would rather see me live and thrive than just survive and expend my limited energy on chores.

So when the intake coordinator asked me to talk about myself, I did. I explained about my disabilities, the troubles I have, and how their agency will help me continue to thrive. And I did it with my head held high despite the pit in my stomach.

Because just like my cane or wheelchair, this service is a disability aid that is needed.

When the meeting was about over, my husband reminded me why we make a great team. He told the coordinator that I own and operate a business in town.

And just like that, the pit in my stomach dissipated as I was shown by the way he spoke that I am seen for more than my disabilities.

Mindset matters. When I’m asked to talk about myself, I have to do better at remembering that I am more than the things I cannot do.

Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.