I intended this post to be an epic rant but at some point I reminded myself that we (i.e. all humans including myself) can only understand from our individual level of perception so my epic rant is now a passionate plea…
The physical and emotional effects of Guillain-Barré Syndrome & Neurogenic Heterotopic Ossification are traumatic at best. I woke up one day and felt, looked and sounded completely different to the person I knew for over 30 years. My self-confidence was inevitably shaken and I am much more vulnerable than I care to admit (to myself or you). Your words influence and affect my life so think before you speak because your pleasantries are not always pleasant…
Firstly, to dispel any misconceptions – I am not passing judgement, in the past I lacked the understanding that only personal experience can garner so I too was inappropriate. I have absolutely no problem with you being curious or asking me questions about my conditions (I welcome it!). I am aware that persons are at times distracted by their personal struggles and I appreciate the notion that life is 10% of what happens to me and 90% of how I choose to react to it but in some instances I cannot justify cruelty as coming from a well-intentioned – even if slightly misguided – place of love and support.
So here’s the thing!
- The statement / question “You should not be in this position, have you tried finding a job?” is insulting. Do you really think debilitating illness, outstanding debt, astronomically high medical bills and financial dependence on anyone but myself is my preference? If working and self-sufficiency were options I would not need to be told to do them.
- If you ask me how I am / feel and I explain in honest detail do not then dismiss me by pointing out that I could be dead or it could be worse. I am currently living my worst and the fact that my situation could deteriorate further is not a comfort; it is just terrifying.
- Telling me that I am too happy, young, beautiful or intelligent to be in a wheelchair is not a compliment – appearance or demeanour is irrelevant, the only qualifier for wheelchair use is complete necessity and that is too serious a fact to be mocked. Furthermore, as I would like nothing else than to be able to finance the surgery that can help me get out of mine, the statement just serves as a heart-breaking reality check.
- I no longer know what to do with the suggestion that I just need to pray more and think positively. On a daily basis, I am immersed in prayer and optimism from multiple sources yet here I am more than two years later.
- I am not in a ‘who is in more pain competition’ My pain – physical and/or emotional – does not diminish when you point out that others are in more pain than me, it in-fact intensifies just thinking that someone is made to endure “more” of anything so distressing.
Of course there are others – you are getting fat, tired doing nothing all day?, I understand how you feel but ___, you could really smile and my all-time favourite, feeling pain is better than feeling nothing at all – and still these are only the tip of the iceberg but I hope that you get my point because while I have made progress in coping with the current me and loving my life more that I hate my pain, I am not yet ‘wordproof’.
June 30th, 2018: 877 days with GBS & NHO and my recently revised but very insightful perception makes me acutely aware that we are all just a diagnosis, accident or decision away from an entirely different life and it is all too fragile for any of us to be unkind so please choose you words wisely…
*** be the family, friend or stranger that you would like to have ***
Don’t give up Dawn. As my grand mother use to say “Time longer than twine.”
This was a painful read but I admire the delivery of your thoughts and the strength in your words. May we be so guided. Truly inspired by you