Helen’s Story
Living with an Acquired Brain Injury
By Helen Caliguri
When I was 34, I was finally diagnosed with something I’d had from birth called Arterio Venous Malformation, otherwise known as AVM. It’s the ‘cool’ thing bandied about in all the medical dramas on T.V. Maybe it’s cool because doctors can’t explain how it happens. When I was diagnosed, it only came as a little bit of a shock as it put a lot of my symptoms into perspective.
When diagnosed, there was no surgery available to me. It is inoperable and there is a 2% chance every year of a major bleed, stroke or potential death.
Within a year treatment came to Melbourne in the form of radiation. I had waist-length hair then. That was the first thing I had to let go of. A woman’s hair is really her identity. I repeat, waist-length hair! Pretty much everything the doctors said might happened, has happened and then some.
I now have permanent, left-sided stroke-like symptoms. I have lost some eye-sight, but I am alive, and all of these things happened under controlled circumstances. Lastly, there is no such thing as a cool ABI.
I think I’ve dealt with things pretty well, but I don’t think I can say the same for the rest of the family all the time.
Here are some hints from me:
- Time heals. Never is that more true than with an ABI.
- The brain is forever evolving. You just have to be prepared to try new things and never give up!
- Allow yourself time, there is no limit.
- There is life after an ABI.
- Buy some hats.
- Get used to being tired, sleep is your friend.
- You will be ok- just don’t ask me to define ok
