DAILY LIVING & MOBILITY

How writing & humor helps me deal with my rare brain diseases

Rare Disease & Syndrome

Erin Loughran

Making banana bread out of mushy bananas since 1986...

Hello. Hola. Bonjour. Nyob Zoo. I'm Erin! I like language & cultural things, and people and design and writing...and lists. A teacher by trade, most recently I taught English to adult immigrants and refugees in Minnesota. I love it so much that I went to school for way too long and have a Master's degree in it. Oh, I forgot! I also love plants and art and Netflix. And lamp!

I also have an invisible BFF who's a big part of my life now.

To be honest, she's kind of a jerk sometimes, but I still let her chill at my place until she gets evicted, read: my situation is inoperable, so let's not let that happen, mmm kay? She's also extremely dramatic so I get sucked into the drama often, but I have ways to deal like: meditation, supplements, prescription drugs, and writing.

In September 2016 I was a fairly typical and independent 30 year old who ended up in the ER, got her brain scanned, and found 6 lesions, including a hemorrhage on her brainstem causing, well, a lot of stuff. You know, same old story. Except...mostly, my world got flipped, turned upside-down. (And if reading that reminds you of an old-school lyric, I wrote a blog post on how I told my friends about my brain diseases by ripping off The Fresh Prince.)

My iBFF represents two of my diagnoses (acquired brain injuries, ABI meaning no physical incident caused them): multiple cerebral cavernous malformations CCMs, and hypertrophic olivary degeneration, or HOD. The HOD was caused by my CCM brainstem hemorrhage and prognosis is currently unknown. So that’s something that’s not worth energy worrying about, right? Right.

Both brain diseases are rare, both affect my life tremendously, and raising awareness about them is my jam.

I now have a physical disability affecting my right arm, hand, and leg. That means I mostly walk with my rollator, and sometimes cane. I also have a lot of symptoms that flare depending on the day, or even time of day. Seriously there are so many symptoms, it’s kind of a bummer to list--so I won’t.

But I do want to tell you about my writing. I write because it helps me deal, and I tend to keep things light because it helps me to not dwell on how intense the situation really is.

The idea for my blog came after months of trying to find purpose after brain bleeds that left me with physical disabilities and with cognitive deficits. I was all "hey, I love design, tech, and writing! I should write and create a humor blog to document this crazy journey!" Finally, MyInvisibleBFF.com became a thing not too long ago.

BIG. MILESTONE. The blog chronicles my experience as a single, 30-something, dependent woman (who was previously independent, and on the verge of nailing being an adult...ok we'll say "nailing-ish" for full disclosure...), navigating healthcare and caregivers as family members, brain bleeds, and finding purpose in a lot of uncertainty.

So, what do I do when I’m not getting my you-know-what handed to me by symptoms? Well, I have lots of plants, live with my original roommates (we’re neighbors, and they’re my full-time caregivers), I write/paint/design sometimes when I feel okay, and put my pants on one leg at a time--while sitting on my rollator or holding onto the bed frame for dear life. Just like everybody else. Sorta.

If this is even a little helpful to you in identifying/owning your invisible BFF, understanding a friend/loved one more, or gave you more information on acquired brain injury, and maybe even a chuckle, then my writing will have done more than its job.

xoxo Erin

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