Tamila Skryabin was diagnosed with ALS in 2019, at just 23, after a long and frustrating search for an explanation of the symptoms she experienced for years already. The news came a month after convocation from the University of Alberta with a B.A. in Psychology and English. The disease forced her to abandon many of her pastimes, including drawing, painting, singing, dancing, and playing multiple instruments, as well as end a long-term romantic relationship and all job prospects.

Now, finding herself with a surplus of time on her hands, she began seriously applying herself to electronic music production, having still been able to use a computer mouse in her wheelchair. Her classical and jazz musical training assisted her in composing in various styles of music. In 2022, she collaborated with the ambient musical project Little Symphony to release the song Sea of Light. All profits are donated to the ALS Society of Alberta. In June 2023, she released her electronic music album, LEGACY, under the moniker “psiloskryabin”. 25% of all sales on Bandcamp are donated to the ALS Society of Alberta.

She is also publishing a series of fantasy novels, the first being “The Temple of Light”. Having lost the ability to type and write by hand, she will write the next installments with an eye-tracking device, which she also uses to communicate both on and offline. By sharing her creative works, Tamila strives to show that while the disease certainly places many limitations on the one living with ALS, it is still possible to find meaning (in life) in other ways. Your ALS diagnosis does not define you.

Tamila is forever grateful for the support of her parents, family, and family friends, as well as the ALS Society of Alberta. She enjoys watching various media, playing video games, listening to music, and cuddling with her pet hedgehog, Sonya.

LEGACY can be streamed on Bandcamp, YouTube, and SoundCloud.

Sea of Light can be streamed on Spotify, YouTube, and Apple Music.