There was an unveiling this past week, a happenstance or a call to action depending on how one chooses to view it. When you become chronically ill and disabled, life changes in every way possible, however the most drastically heartbreaking change for many of us is loosing all connection with colleagues, friends and family. It became another heavy layer of grief on top of the princess and the pea sized bed of extraordinary amounts of grief to work myself through.
Why I bring this up is as my story unfolded I found a new community of human beings with stories like mine who offer unconditional support and compassion. Complete strangers who warmly open themselves to each other with the very limited and often extinct energy reserves they hold within themselves. One of these tribes being the community of people who are living with disability. This week my tribe of disabled humans around the world celebrated International Day of People with Disabilities on December 3rd.
It took over two years of struggling with chronic illness and pain before I was diagnosed as being ‘disabled’. Time after time of experiences with inability, continually trying again and again only to witness extreme failure. When I heard my specialist as she made direct eye contact nearing the end of our 4 hour consultation, I still remember vividly and hear her voice making sure I knew I was disabled. Of course the 4 month long flare after my 4 hour appointment certainly confirmed my disability and it also solidified that I was to live a housebound lifestyle from now on.
My disability is invisible, not seen by others human eye but identified in my behaviour or body language to my caregiver and husband of 28 years Brandon Steen. I spend most of my time sitting while he his attending to all of the daily chores, none of which I am able to do. While I sit I am practicing ‘pacing’ which allows me to reserve energy stores, ease muscles and joints from overuse which causes pain and rest my vital organs. Our lives forever changed, dreams shattered our one constant as always is each other.
My conditions are vast but the main reason for my disability is Myalgic Encephalomyelitis, Fibromyalgia and Environmental, Food and Chemical Allergies. All of the above are severe. Together they have disabled me and are caused by an unhealed virus living in my body. The unhealed virus controls my body, not me.
There is a need for awareness of disability especially invisible disability as people are not able to visually see that we require inclusiveness, modifications, special assistance, equal accessibility to all services and supports of the able bodied. Simple things like waiting on hold for 10 minutes or talking on the phone for extended periods of time, standing in a line for long periods of time, driving a car, taking transit or walking from a parking lot, following multiple steps and navigation just to get into a website, talking face to face with others, tolerance of chemicals and fragrances in public settings, walking up sets of stairs. All of which are overstimulating, causes inabilities and simply not possible for a disabled person. Yes, the very system that is supposed to support us is inaccessible, leaving many disabled persons to suffer in isolation.
I am only able to walk 70 steps to my corner once and awhile due to my disability I require the support of a mobility aid for rest periods. Due to people in my community who do not practise safety precautions towards Covid 19 despite the continued science and urgency to do so from around the world, within Canada and the City of Toronto where I live. I must walk late at night when the most people are indoors so as not to come in contact with other humans.
This is merely one example of how the disabled and chronically ill are not supported and become drastically at high risk during pandemic times. I have even had a neighbour threaten us to stay on our side of the street or inside of our house if we are so concerned about contracting a virus that will likely kill me. Such horrible vile, ignorant and hateful language to use towards a disabled person and to threaten me to stay inside my house is offensively repulsive. This is the only time I am able to walk with my husband and our dogs, due to my disability and has become such a rare instance during the pandemic.
I kindly suggest that the next time you find yourself with opportunity to show care, kindness and compassion to another person to reach out and do so. It will fill your heart with a warming joy, show another person that their are people who care and more importantly give assistance and support to someone who is desperately in need of ease in life rather than more suffering. You may be caring for a person with an invisible disability giving them what they need most in this chaotic world, kindness and care. Perhaps you will never know but your heart and theirs will be full on that day. Kindness makes the world a better place.
2 thoughts on “Learning To Live a New Life Disabled”
My heart goes out to you Jane. The pandemic has brought out the best and the worst in people. When I had broken my leg and was confined to the bedroom, I was very grateful for the volunteers who would fetch our perscriptions for us. These days, I just see a lot of self-ishness. My husband and I are some of the few people we see wearing masks (outside of shops that is), the others are elderly and the frail and East Asian students. The Asians have a much better sense of looking out for others in their community rather than thinking about their “rights”. It’s all very wearing!
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I have taken my focus in house now. Our theme being ‘Our house’. Keeping positive within my walls and garden.