If I can’t See It, It Isn’t Real (Living With a Hidden Disability)

invisible-disabilities

I was born in 1965, in an small industrial city in the Northwest UK. I was born with a condition known as Spina Bifida. Fortunately, as my mother states it, I was born blue, meaning I was not getting enough oxygen. Fortunate because the doctors immediately saw the tell tale sign of Spina Bifida in the form of a Meningocele at the base of my spine. They were able to drain the fluid on the spinal cord. Apart from some bladder issues, I was able to live a relatively normal, and active lifestyle, enjoying running, playing hockey and working. That all changed in 1997.

In 1997, while working, I was standing about 15 feet up a ladder. The ladder collapsed, and I went crashing towards the hardwood floor beneath me head first. Fortunately (or unfortunately, depending upon how one looks at it), a solid oak post cap on a stair railing broke my fall and flipped me over. This probably saved me from breaking my neck. Unfortunately, the impact was directly where that meningocele was located. Surprisingly, I was able to return to work a few days later, seemingly with no ill effects.

Three months later, I bent down to pick something up off the floor at work. That was the last day I was able to work. I was at a rehab clinic, being treated for a ‘strained back.’ While there, my family doctor thought that it was more than a strained back and ordered an MRI. I will never forget the day my occupational therapist came to me at the rehab clinic, white as a ghost and told me to immediately stop what I was doing and go home. He told me that I would not be coming back as the rehab I was doing could in fact cause me to become paralyzed.

Next day, I saw my doctor and was told I had something called “Tethered Cord Syndrome”. My spinal cord was tethered to fatty tissue, and when I fell, it triggered a whole series of neurological issues. Chronic pain. Numbness in my legs and collapsing. Tremors. Sleepless nights. Symptoms that mimic MS. I was referred to a Neurosurgeon and was told I would need to have my spinal cord de-tethered. Chance of success (not re-tethering – 50/50). If I did not have the surgery, paralysis was a very real possibility. The cord did re-tether, leading to a second surgery, where it re-tethered again. I was given the news that this would be the way it would be. Further surgery would be too risky.

Jump ahead to today, 2015, eighteen years to the day of the collapse of the ladder. Chronic pain has been my daily companion. Some days are great – you could say, normal. Some days it takes everything in me to get out of bed. I have battled narcotic prescription drug addiction – at one point I was up to 45 percocet/day. I would eat percocet like candy. There are entire months that I cannot remember. I lost my marriage. I came close to losing my life.

In all of this, the one thing that bugs me most is this – ignorance. You see, in spite of all that has happened, I have a hidden disability. This hit home when, about fifteen years ago, I pulled into a handicapped spot (with the tag displayed) at a grocery store. Someone looked at me and said, “Oh, you look disabled!” Then he cursed me out. He wasn’t interested in hearing why I had to park in that spot. I even offered to drop my pants so he could see the five-inch scar from the then recent surgery. As far as he was concerned, if you are not in a wheelchair (which I have been), you are not disabled.

I still have a difficult time explaining why I cannot work and why Workers Compensation is providing my income. This is what living with a hidden disability is like. People simply do not understand it. People suffering from hidden disabilities can have many faces. Mental Illness is a huge one. Psychiatric wards in hospitals have been closed down. Where do these folks end up? You guessed it. On the street. This leads to addiction. Drugs. Alcohol. The Downtown East-side of Vancouver is the poorest neighborhood in Canada. If you drive down East Hastings near Main Street, you will definitely be confronted with dozens of people living on the street. Get out of your car, and the smell of piss is overwhelming. A good many of these men and women, including children are there because of mental illness. One of the most misunderstood hidden disabilities.

When you see someone like me, or someone living on the street, never assume. You simply do not know what other people are going through and dealing with every day. Fortunately, my WCB disability income allows me to at least get by. Unfortunately, many living with hidden disabilities do not have that luxury. If you know someone who cannot work, don’t judge them. If you see a homeless person on the street, don’t just pass them by. Buy them a coffee. Buy them a sandwich. Whatever you do – do not assume!

Peace!

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