Some lessons come easy. Other life lessons come the hard way, hammered out between the hammer and anvil of some of life’s most painful experiences.
It’s a tough nut to swallow when you look back and realize with stunning clarity that the very quality of day-to-day life after a TBI is largely determined by how well insured you are.
My injury was back in November 2010. Nothing good comes to pass when a sixteen- year-old driver careens into a cyclist. I should know better than most – I was the cyclist.
Our health insurance at the time carried a $10,000.00 deductible. It was more of a catastrophic plan than any meaningful health insurance plan. When the calendar turned to January, a few weeks after my accident, our deductible reset. The timing couldn’t have been worse.
Like many who are affected by traumatic brain injury, my symptoms took some time to manifest. My body, broken and bruised from the force of the accident, continued to heal. And as I healed, it became painfully clear that all was not well.
My wife Sarah and I had to make some tough choices, the types of choices no one wants to make. But such is the nature of life. Do we pay the mortgage or pay for ongoing health care? Do I get that sleep study, or do we buy groceries this week so that the children can eat? How about speech therapy? Sorry, folks, we have an electric bill that is overdue.
It’s not as if we were looking at a few hundred dollars here. A sleep study alone can cost over $5,000—money we simply did not have.
Our situation is not unique. Over the years since everything changed, I’ve met others who faced the same tough choices. It’s pretty fair to say that much-needed, doctor ordered healthcare had to be passed by because of our insufficient insurance coverage.
Brain injury recovery lasts a lifetime. So does the possibility of new TBI challenges. A couple of months ago, well into year five, some unexpected changes came my way. The “ice pick headaches,” common during my first year, came back with a vengeance. The volume of my tinnitus doubled overnight – and stayed that way. New symptoms began to appear. It became clear that it was time again to reach into the medical community to have a fresh set of eyes look at me.
And now, at five-and-a-half years out, I am finally in a position to get the medical care that could have made the last few years easier. We have a new insurance plan now, one that includes a $750 per person deductible. That alone can make me giggle.
Last month, I saw a new neurologist, one who specializes in concussion treatment. In two ticks of a clock, we were back to square one. Over the last few weeks, I’ve had a new MRI, a new EEG and by the time this article is published, a new sleep study.
Looking back with the perspective of time, I see that there is nothing we could have done differently. We were under-insured at the time of my accident and did the best we could with what life threw at us. There are no regrets, no sadness, and no bitterness. Just the realization that the quality of life can be correlated directly to insurance coverage.
My new neurologist has said that he can and will be able to bring a measure of relief to many of the challenges that I face. His words alone bring me both great hope as well as a dash of fear. I don’t want to get my hopes too high lest the crash back to reality ends with a thud.
But it’s hard not to be excited about this. Years of living with overwhelming brain fog, speech challenges, no meaningful memory, and so many other TBI challenges does get weary – not only for me but for those close to me. Just ask my wife, Sarah.
Life indeed goes on. Like I’ve done for the past few years, I’ll remain transparent in my journey, knowing that others might learn from our experiences. And who knows, life might be about ready to get much easier. I can only hope.
Comments (7)
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Anonymous replied on Permalink
Thank you for sharing. Going in to nine years after the first of several head injuries, my wish would be that I was sent to a NEUROphysiotherapists from the beginning, not separate therapists (one for Physio, one for vestibular therapy) etc.. But it is all about what we can afford because to quote one doctor, "I would send you there, but they (the insurance) won't want to pay for it".
Anonymous replied on Permalink
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Anonymous replied on Permalink
Thanks for sharing your story. I'm glad to hear that you will now get the help that you need. Even after 5 years it is possible to make great gains cognitively and clear up that brain fog. I have been so moved by stories such as yours--to hear about no insurance or lack of proper medical guidance--that I am currently in the beginning stages of creating a detailed cognitive workbook for people like yourself to do at home. Because Everyone deserves a chance to recover!!! Stick with it!
Kim W. speech therapist
Anonymous replied on Permalink
Thank you for sharing your story! I read your articles with such hope for my husband. Some of his TBI symptoms sound identical to yours, especially the 'ice pick' headaches, speech and brain fog. Please share how your new doctor has helped you. :). I am super optimistic for you and your wife. :)
Anonymous replied on Permalink
When you have great insurance with your choice of doctors, that brings an entirely different set of challenges. Doctors will see me because they want the insurance money, but they often misrepresent their abilities and experience with TBI resulting in a lot of wasted time and energy. It's a horrible system really - those of us with a brain injury are the least capable of evaluating what we need, and yet we are left on our own to navigate a maze filled with dead ends.
Anonymous replied on Permalink
I was injured while working. I am on "temporary" partial disability for almost 1 year. I do have medical insurance but the workers compensation insurance refused to cover the concussion program which was helping me because their doctor said I should be back at work a few months after the TBI. My PCS continues to this day. I need to rest after reading and writing this.