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by Connie Scott, ABI Spouse

Journey Not ChosenAs Brain Injury Awareness Month draws near, I’ve given much thought to the subject. Most of the general population has no concept of what “Brain Injury” really means. Not only is the life of the person with the brain injury irrevocably altered, but also the lives of his or her whole family, as well as every existing relationship they have, is changed. A catastrophic, life altering brain injury is an invisible disability which occurs by various means. A stroke causes brain injury, as can a coma, an epileptic seizure, an accident involving head trauma or even something as simple as falling off a bicycle and landing on the pavement.

The brain is a very complex organ in the human head which controls every movement, thought, sense and emotion we experience. Many intelligent professionals have studied the human brain extensively, but there is still relatively little understanding of what a severe brain injury means to a sufferer and his/her family. With that one cataclysmic event, the journey begins. Nine years ago my husband suffered a horrific motorcycle accident on Highway 401 which left him with an acquired brain injury (ABI). Gary spent five months immediately following the accident in the rehabilitation hospital undergoing physical therapy and struggling to regain his cognitive abilities. Reading, writing, spelling, vocabulary, sequencing events and communication skills, in general, are still a struggle nine years later. He works hard each day to retain his progress because to relax his efforts means losing hard-won ground.

We are intensely blessed as a family. Immediately following the accident we were referred to an excellent law firm which specializes in cases of personal injury and then, through our lawyer, we received only the best people in their fields to work with Gary. Our insurance provider quickly and willingly acknowledged Gary’s disability and approved the necessary funding to supply the help he needs. Our church family stood behind us and prayed, faithfully all along the journey. They still do. None of this made those first years easy. We cried. We fought. We went through all the steps of grieving because someone did die that day.

Gary is not now, and never will be, the same person he was before the accident. Our whole way of life as a family is forever distorted.

When someone suffers ABI time becomes defined by, before or after the event. Those years were excruciatingly painful for our family, even though the administrative process went smoothly. Unfortunately, that is not the case for the majority of ABI victims. As life began to settle into a pattern as normal as it’s ever likely to be for us, we began to become more familiar with the ABI community. What I have discovered sickens and angers me. When it comes to giving support and funding to people suffering from ABI, our system is seriously flawed. The expediency of Gary’s journey through the system is extremely rare. Most people who suffer an acquired brain injury are in for the battle of their lives just to successfully access the vital resources required to live out the remainder of their lives with some facsimile of comfort.

The first two years after an ABI has occurred is widely believed to be the optimum time for recovery. However, it often takes longer than two years to convince insurance providers to arrange the assessments necessary to provide proof of a disability in order to get funding approval for therapy to facilitate that recovery. This precious window of opportunity is often forfeited because of bureaucracy. Meanwhile these families have incomprehensible stress caused by the uncertainty of getting help for the patient, worrying over how to pay the bills, keep a roof over their heads and put food on the table. While struggling to cope with unthinkable life changes, they are also dealing with the added stress of altered or lost friendships and family relationships and no idea of where to access the tools or peer support that could help make their load more bearable.

It’s not uncommon for a family dealing with ABI to sacrifice property and financial security to this silent, invisible disability. ABI routinely strips families of every sense of peace and stability. The majority of marriages are not strong enough to survive the challenges of living with a spouse or child with ABI. Silent? Invisible? Yes, quite often but it is a journey nobody chooses and it’s the journey nobody gives much thought about until it happens to them or their loved one. So next time you hear about someone who has suffered ABI just stop for five minutes and really think about what that means to the lives in question. How would you cope if the rug was yanked out from under your family by ABI and you were forced to embark on the journey not chosen?

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