🏔️FIELD GUIDE 52: It’s the climb

This week Jeff made FIELD GUIDE easy by making one heck of a connection. Karolina (Caroline) Pakenaite is joining us sharing her story. Caroline oozes positivity and has some pretty incredible goals.

Caroline has Usher’s Syndrome. While honing in on that positivity she is doing more than most (like majority, if not nearly all) without a rare genetic disorder.

This week I hope that Caroline can inspire you to not let anything hold you back. Do what you can, when you can, because you can.

Follow Caroline on her journey that she is sharing with us today on Instagram, Youtube, and TikTok.

Name

Karolina Pakenaite

Occupation

PhD Student, Computer Scientist, Mountaineer

Habitat

Planet Earth

Soundtrack

(Spotify)

Couple weeks ago, I had the pleasure of meeting Jeff at a deaf hike, and it got me thinking about who I really am. As we got to know each other, Jeff described me a computer scientist and a mountaineer, which made me chuckle because I hadn't seen myself that way before, remembering one of my favourite quotes “I am not who you think I am; I am not who I think I am; I am who I think you think I am” (Cooley).

The whole concept of identity and labels has always fascinated me. When can you truly claim a label? Is it after gaining a ton of expertise? Or is it after spending a significant amount of time on that thing?

I don’t think it’s that straightforward. I was born hard of hearing, and sometimes I forget that I am deaf because I can hear a bit and went to a hearing school. But there are other moments when I strongly identify as deaf because of my deep connection to the deaf community. It's this constant dance between the two.

Allow me to introduce myself: I am Caroline, and I have a genetic condition called Usher's Syndrome, something that not only affects my hearing but has also caused my sight to deteriorate since the age of 19.

Similarly, there’s this constant dance between the two - one day I confidently say I am blind and other days I question it all. I have a tunnel vision, yet when you google this, I find it completely misleading. The edges are not black. In fact, my vision feels like it’s full and I can see everything within my field of view.

Which means that I never really know what I can't see so very often I forget about it and end up being overconfident in my walking! That's why I need my guide dog. He helps me navigate around obstacles and avoid me bumping into things. 

Currently, I'm doing my PhD in Computer Science, focusing on creating tactile images for the visually impaired community. I love this work as it feels like I am giving back to my own community. It doesn’t involve a lot of coding or the typical computer science stuff, so I struggle to fully embrace the label of a computer scientist.

Traveling is another passion of mine, even more so since diagnosis, making precious memories before my sight deteriorates completely. Just over two months ago, I went to Everest Base Camp and it was INCREDIBLE! 

We reached the base camp in 7 days and got back down to Lukla airport in 3 days. It was a lot more challenging than it should have been because we lost one of the two days of acclimatisation due to a 6 hour flight delay. It was chaos at the airport - no structure, no timetable and they told us our pilot decided to take a lunch break in Kathmandu! And even then, we were lucky because we overheard another group had to wait for three days due to a bad weather! 

When I came back to UK, I kept telling everyone that I had no high altitude sickness. But after some reflection, I realised I had most of the symptoms! I think because I kept my mind so positive throghout the trek, I never ended up registering them as symptoms of high altitude sickness!

It taught me so much about myself, the power of the mind, and sheer determination. It felt super fulfilling to check off the biggest bucket list item, that it fuelled an even bigger dream…

I want to be the first deafblind person to summit Mt. Everest! I know a deaf person has reached it, and a blind person has done it too, but not sure about deafblind. If I ever get the chance, I wanna do it before my sight is completely gone. Time's ticking, so I figured it's now or never. I'm just a student, no big finances or connections – a wildest dream that feels so out of reach. But I won't know unless I try, right?

So, I've been reaching out to different organizations, and surprisingly, a filming production team got back to me! I cannot describe the excitement and it has been unbearable to keep it all a secret! I plan to use this chance to raise awareness, bring representation and train with the Nepali locals. They’ll be a big part of this journey too. Of course, it's risky, and we're still figuring things out, including funding. Summiting usually costs around $50,000, and with my condition, I'll need extra support, maybe costing twice as much.

Join me on this incredible adventure.  If you've got some relevant experiences to share or wanna offer support, please get in touch! Embracing my labels and identities, I'm hoping to inspire others to find their extraordinary paths and make a real difference in this world. Let's go for it together!