I have been waiting to meet with a neurosurgeon for two and a half years. In October 2021, a referral was sent to a neurosurgeon because of the weird crap that is going on with my spine. I have yet to see one.
Since then, I have become too ill to work. I have gone through the dehumanizing process of applying for provincial disability benefits to provide for my son and I. We have been forced into poverty, using the food bank, filling out a crisis supplement form for the ministry to ask for extra funds to buy my son new snow boots when he has a growth spurt, being sponsored at Christmas so that my son has gifts under the tree.
This has been, to put it bluntly, personally devastating for me. I have multiple university degrees, and became a single mother by choice with the expectation that I was well positioned to raise my son in financial comfort.
There have also been many other impacts on us as I wait to see a neurosurgeon, some of them surprising.
I have dealt with profound depression, and have experienced suicidal ideation for the first time in my life. I cry a lot. I used to be an avid reader, but because of my medications, I struggle to concentrate. I am absent minded, and forget many words, losing my train of thought in conversation. Formerly someone who loved to be busy, I am unable to move my body without pain, and struggle with boredom. We live in the most beautiful place in the world, and I am housebound 90% of the time. When I do go out, I use a cane or a walker (who I have lovingly named Francesca).
My 13 year old son has taken on new roles and duties at home that are usually handled by older family members. He watches me closely, and frequently asks if I have taken my meds, or what my pain level is. He has also learned how to live with a disabled parent, understanding that I need to pace myself constantly, and that all plans made are contingent on how I am feeling that day.
My nervous system is a total wreck at this point. I live with constant pain, and have developed fibromyalgia. My pain receptors are stuck in the “on” position, and it is likely that even if the neurosurgeon is able to help me with my pain levels, my nervous system has been permanently impacted.
I am 48. My whole life has been interrupted. My professional trajectory has been derailed. Any financial security I once had has been eaten away. My child lives with constant worry about my well being. My body continues to degenerate, my pain levels increasing, my prognosis declining.
I have an appointment at the end of this month with the neurosurgeon, finally. I have been forewarned that *if* they approve me for surgery, the focus is on stabilizing my current state, preventing a possible future in a wheelchair, and not returning me to “normal”.
I am left to wonder, what would our life and our future look like if I had seen a neurosurgeon within a month of my referral? Six months? Even a year? We have to live with the reality of our situation, but it’s hard not to have these thoughts on my especially challenging days.
(I have kept the details of my illness vague to try to avoid any well meaning comments or messages with suggestions or cures. Trust me, if it is available and legal, I have tried it.)
Poverty Advocacy Nanaimo 