Elizabeth Brown – We’re All Superstars and Heroes
Elizabeth Brown has paraneoplastic syndrome. She is very creative and likes to make cards and do bead weaving. With smart ways to compensate for her difficulties, she is still able to enjoy these hobbies. Elizabeth also has a way with words, so be sure to read on until the end!
In 2010, I was a 53-year-old vice president working in IT/Business Intelligence with my team. I told senior executives (we were often consultants to them) that my department would be closed in May due to babies and marriages. Little did I know I’d also be sick that month. I had three hospitalizations and I did NOT enjoy calling the CIO and saying, I, too, would be out of action. I just woke up sick one morning.
I presented with non-stop vomiting. However, it was my suggestion that perhaps the dizziness was causing the vomiting, and not that the vomiting was causing the dizziness. Five years and many doctors later, I was diagnosed by the Mayo Clinic that I had a paraneoplastic syndrome where antibodies were attacking my cerebellum, thus causing all my problems (due to cerebellum atrophy – balance, speech, coordination, tremors, etc.). 1% of all cancer patients have a paraneoplastic syndrome and 1% of them have no tumor. I have neither.
Many things have helped me cope with the various challenges, including my faith and the various ataxia Facebook groups. It’s so nice to have people who really ‘get it’ and can offer really useful suggestions. Like others, I can’t help but wonder what the future holds. But until then, I live life to the fullest: I walk – a lot – and greatly enjoy my adult trike and the freedom it gives me. I also write, make cards, and can still do bead weaving – I’ve learned ways to compensate. Like holding my hands down on the tabletop to ease tremors, or to use one-pound wrist weights. I write a lot since talking is challenging. Because I can’t read any longer at church, I became a webmaster and wrote a homily message each week. I save my energy in little ways, like moving to a home with no stairs, limiting my commitments so I can do them well, buying premade meals or salad mixes, etc.
There have been some tough pills to swallow (understatement!), and I honestly don’t know how well I cope – but I try. I don’t like it when people underestimate me and think I’m dumb because I don’t talk well – but they are few thankfully! And asking for help is new and not pleasurable, but I do it because it only hurts me when I don’t. And I believe it helps others to help, which is key for me: focusing on others helps me avoid having the ‘poor-me’s’
Here’s to us; we’re all superstars and heroes!
(feel free to use the following if you think it’d be helpful to others).
To help others understand, I wrote the following:
Differently Abled
I’m differently abled,
Not disabled.
Often, our world values a person
By his or her productivity.
When one becomes ‘disabled’,
So much changes!
“Where do you work?”
“What do you do?”
Becomes silence.
People are nice.
They reach out,
Want to help the ‘disabled’ one.
My body has changed
But not my mind.
“The spirit is willing
But the flesh is weak”
Has so much meaning now!
I tire easily,
But my brain is still going.
I have thoughts to share,
But forming words is hard.
So much has changed:
Singing is hard.
I no longer lector.
Beading and other artwork
Take much more time.
Walking in and of itself
Has become exercise.
Biking with a ten-speed
Has become pedaling slowly
With a three-wheeler.
But I tread on.
Even though I tire easily.
I love to do.
So, here’s to me!
And to all those that support
And enable me –
Thank you.
Big thanks to Elizabeth for sharing her story and for poetically expressing her thoughts on being differently-abled. These words will surely touch the hearts and minds of others.
Please consider sharing your story – whether you have Ataxia, are a caregiver, friend, or relative. You may fill out the form below to get started.