Amber Constable was born with spina bifida and hydrocephalus as well as hearing loss. A passionate learner, Amber has developed strategies to manage her medical conditions. The 37-year-old lives with her parents in Maynooth, a small town near Bancroft, Ontario. Over the summer, she worked part-time at the Heritage Museum where she responded to enquiries and did clerical work.
For Amber, each day brings an opportunity to learn something new, whether it is on the Internet or on television. “Even though I do things in a different way, I can still learn.”
Amber learned sign language when she was ten years old and developed a special bond with her educational assistant, Violetta. Since Violetta’s nephew was also born with hydrocephalus, she understands what it is like to live with it.
“Violetta supports me like no other friend and treats me the same as anyone else. We go on road trips and hang out. I don’t know what I would do without her. She has always encouraged me. She has taught me to thrive and pursue whatever I want in life.”
Amber was educated in the mainstream schooling system until grade 11 when she left home to attend the James Whitney School for the Deaf in Belleville for additional support. She returned home on weekends and holidays.
Things turned around for Amber after changing schools and she became much happier. She excelled in sports and became computer literate. Amber also became more familiar with the deaf culture, learning how to speak with clarity and pick up words so that she could be better understood in conversations. She now has more friends.
Amber strives to be like everyone else and fit in. Her parents are her biggest advocates and give her a lot of support. Her mother understands sign language. Sometimes, because they are elderly, she worries about the future when they are gone. Although it is scary to think about, she has lots of family and friends she can count on.
Amber’s spina bifida is stable and she walks without orthotic support. However, she has had some issues with hydrocephalus. About four years ago Amber began having headaches, but her family doctor was not concerned. After a year, her mother insisted that the doctor order a CT scan.
The scan showed excess cerebral spinal fluid in her head, and she was referred to a neurosurgeon who replaced her shunt. About a year later, she became nauseous, dizzy and could not walk. She went into a coma and nearly died.
The experience was terrifying for Amber, particularly the fact that only one nurse knew how to sign. Fortunately, after a second operation on the shunt, Amber is doing well.
She knows the importance of regular follow-up appointments with her neurosurgeon; knows what signs to watch for and does not let any possible sign of trouble go unnoticed or unchecked by her doctor.
Amber also finds comfort and emotional support through her membership with Hydrocephalus Canada. She does not know anyone her age who has spina bifida and or hydrocephalus but is hopeful that she will one day. Through Facebook, she has made online connections with people who have these conditions. This has made her feel less alone and more supported.
Amber attends online presentations by Hydrocephalus Canada and reaches out whenever she has questions or concerns. She has also participated in Hydrocephalus Canada’s “Hugs for Hydrocephalus and Smiles for Spina Bifida” annual photo contest to raise awareness of the conditions.
“I want people to know who I am and to support others with spina bifida and or hydrocephalus. It is important for me to be connected to others like me and to share my story.”
In the fall, Amber will be teaching sign language at a nearby college to promote understanding of the deaf culture.
“I can speak, but I cannot write well. I miss words and mix up my tenses because I cannot always hear them properly. I make a point of telling people to face me, speak clearly and slowly and not mumble.”
Amber has the following advice for others with spina bifida and/or hydrocephalus: “Stay positive. Learn as much as you can about your condition; stay on top of it and be aware of any signs of trouble and ensure you see your doctor immediately if you are concerned. Make connections with others, even if it is online so that you feel less alone and more supported.”
