The enormity of systemic scleroderma often feels way too big for me to fight. At times, I feel like a very small person, weakened by disease, who is just trying to get through each day. I often wistfully wonder if there will ever be enough understanding to find a cure, but sometimes it just seems too big to even dare think. I greatly admire fellow warriors who remain so positively focused on these things.
Something has challenged me, however, to think about possibilities I haven’t felt brave enough to consider before. I’ve recently been having to negotiate knee surgery on top of managing my scleroderma. Today, I managed to hold my 3-week-old knee replacement at an 80-degree bend for six whole minutes. No one was home at the time, just me, myself and my ice pack, sitting there alone counting down each agonizing second. When I reached my goal, I cried with excitement and heard my voice congratulating myself, even going as far to call myself awesome!
I immediately noticed a novel and refreshing feeling wash over me in those few moments of self recognition and encouragement. Suddenly, so much more seemed possible. It was as if the act of encouraging myself miraculously revealed a host of other possible doorways I could choose to go through; doors that had been clouded from my view by self-doubt and despondency.
I have also noticed this phenomenon going on at a global level. There have been so many terrible events recently created by hatred, greed and dishonesty all over the world. I had been wondering if anything could really make a difference when faced with the apparent enormity of these worldwide events.
But every time something seemingly overwhelming happens, I’ve noticed the way people band together in collaboration using encouragement and kindness to create unity. People rising up in groups as a response to these events make themselves heard. There is something enduring and resilient about the human spirit that causes this unity to happen. It’s a remarkable thing. It brings about change.
Since noticing the power of my own personal encouragement during my recovery, my eyes have also been opened to the power that exists within the scleroderma community worldwide. Over the months I have been writing this column, I’ve had many messages from others with scleroderma, sharing struggles and advice, but perhaps most prevalent has been the beautifully encouraging words.
I feel a subtle, but very powerful change in my thinking – a paradigm shift is occurring. I’ve found much more hope that a cure can be found, and I’m more aware of the power scleroderma patients working together.
As a group of people, we can make a difference. As an individual, I feel like a drop of water in a bucket. But I must realize that many drops make up a full bucket … something really substantial and powerful. I believe encouragement is one thing that has the power to help keep us bound together. Further, I feel the culture of encouragement must begin at that drop in the bucket level, starting with being the most encouraging to myself that I can be.
I would like to thank you for your messages of inspiration and support. I feel privileged to be able to write this column, and to be able to add my voice. I see so many awesome scleroderma warrior groups posting online about getting together to raise funds, offer alternative ideas toward treatments and raise awareness. I want to tell you that you’re all doing amazing things, not only in managing your own individual daily lives, but also in offering your support, love and encouragement to others who also battle the disease.
Congratulate yourself on anything you managed to do today, anything at all. Because this is where good things start, where opportunities become clearer and where change begins.
Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to scleroderma.
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