We have all said it, ‘The straw that broke the camel’s back.’ It clearly delineates the feeling or emotion at that particular moment, no question or misunderstanding. Basically, the limit has been reached. Whatever just transpired was the point in which emotions, tempers, relationships, and strength seemed to fail. It is the point from which the path of return is no longer smooth but rocky, and the obstacles feel too great for navigation or hope. There isn’t a person living that hasn’t had to manage moments like this in life. They are crushing and sometimes feel beyond repair. If you are chronically ill or are dealing with ability challenges that are more challenging than empowering, as the world at large would like to believe, then you know all too well what the ‘Straw Phenomenon’ feels like. For some of us, it is a constant companion and not the kind you want to serve coffee to and have a knit-in.
The ‘Straw Phenomenon’ was coined by our Healing Fibers Discussion Group as we were pondering how to handle that final issue that simply makes you implode. The Discussion Group is a very important and special part of Healing Fibers. It is a closed group for everyone’s privacy so we can speak openly about challenges that many able-bodied people will not understand, even our much-appreciated caregivers. Everyone deals with this phenomenon, no matter who you are, what stage of life you are in, or whether you are struggling with illness or are a triathlete. We all have come to the end of our rope where we feel tomorrow is one long dark night away and navigating that darkness is impossible, however, when you live with chronic illness, that night can seem never-ending at times. When that single trial, or tribulation, or increased physical pain pushes one over to where standard methods of management no longer apply, you are swimming in the depths of the ‘Straw Phenomenon’, and the effort it takes to even reach out for a rope to pull yourself out feels increasingly impossible.
We are often told how we are to be empowered by our challenges, and that is wonderful, but this ideology can be force-fed to the place where some, or many, often feel like a failure if they do not have the energy to portray this idyllic image of the wheelchair user climbing mountains, or scaling a rope with a wheelchair tied to them, or kayaking down the Grand Cayon... so, they wither alone, in darkness, hiding their own struggles so as not to appear weak to their own peers... and, another straw is added.
It can be a dangerous place for those of us dealing with chronic illness. What is the old saying, 'A drowning man will clutch at a straw'? It is where the physical challenges meet the mental struggle. I think one of the reasons it is so arduous is because many of our choices have been taken from us. I recently read an article on how many disabled or chronically ill people face a lack of choices and options in their life. They are limited by the physical body in ways that others cannot understand, every single day is a struggle, every movement can be an act of God, every breath can be an effort…that is their baseline, that is our baseline. That is where we are starting from…. It can often be a dark place to live.
The smile you see on so many faces of these people is plastered on so you don’t see what is really happening. Do you want to know what is really happening in these people? Don’t look at their coloring, that is easy to fake; don’t be fooled by the smile, they have become skilled at hiding behind that perfect smile; no, you have to look into their eyes. You can hide almost everything if you have done it long enough to be an expert but it is very difficult to hide the pain deep in the eyes. I saw this in my cousin, who I lost not very long ago from a rare case of Lupus. She always had a smile, always happy and bubbly, but under the surface, she faced horrors not many could ever understand. When I looked at her, I looked at her eyes. What did I see? They are usually a little glassy because there is a thin layer of tears that are being suppressed, you often find them squinting, just slightly, like they are trying to focus, but they aren’t, it is a reaction to pain, and not one easily hidden. When I work with people who have physical challenges, I pay attention to all their body language, but I take my cues from their eyes because they truly the portal to the soul. There are those that will be skilled enough to cover this as well but not many, in my experience. It is the eyes that can tell you if someone is drowning in the ‘Straw Phenomenon’, and there is a chance, they need saving.
As if we need yet another metaphor in this post, yet there is another aspect of living with chronic illness every day that needs to be addressed in this context... it is the snowball effect.. and it starts with a single straw.
When you find yourself suddenly challenged in one way or another, you have what most of us like to call our new normal, our baseline, the pain or struggles we live with every single day and have learned somehow to manage. It is why many of us use Fiber Arts as a way to channel and manage our diseases. It is a way of maintaining every single day. We learn to do it. We get good at it. We even start to thrive in our new normal but then, the snowball begins to roll and the back of the camel begins to weaken… that is the point when we need help, even if we don’t want to ask. Even if we feel horrible for having to petition for understanding yet again because it has all gotten to be too much. We get weary of having to beg for help. The lack of independence is exhausting and becomes overwhelming at the thought of yet again not being able to manage on our own. It is then we need the most help...it is then we are at our most vulnerable.
'Tess Hamel' said it so eloquently in our Discussion Group, "Being human in an imperfect world, we all have our ‘Kryptonite,’ but for chronic sufferers of pain and disease, it can all too often feel like we’re allergic to life itself." (11/6/2016, HFF Discussion Group)
So, what do we do fellow traveler?... As a collective group of people who swim in the ‘Straw Phenomenon’ far too often? Well, there are ways to muster the energy to grab for the rope and begin to pull yourself out.
1) The first suggestion is you need a place of refuge. You need a place where you won’t be judged. You need people to support and encourage you, even if your struggles have been ongoing, happening every day that month and you just can’t get on top of everything. You need others who are not just empathic, but those who can sympathize. There is a huge difference between those who ‘want to understand’ and those who have felt like they were drowning as well. You need to find a safe place. That is one reason we have worked so hard on developing the Healing Fibers Discussion Group. There are no politics, no religion, no opinions to be flung at you when you are hurting, no, it is a place you can go that is filled with people who want nothing more than to hear you. To listen. To support you like they have been supported and help you get past those dark moments. There is never judgment, there is never condemnation, we don't even allow advice, because as we all know, we get more than enough of that every day!... there is just love. You need a place like that when you are struggling.
2) The second suggestion is you need to find a way to channel your mind. It is too easy to let our minds fixate on our pain, our circumstances, and our struggles, so you need to deliberately focus on an activity. We at Healing Fibers hope you will consider Fiber Arts. We turn our challenges, our dark moods and those days we swim in the ‘Straw Phenomenon’ into beautiful and usable art. It makes a positive out of a negative. When you work with fiber, you have a sense of completion that comes with bringing order from chaos. You channel your pain, focus your mind on something creative and become productive. It becomes a much-needed outlet.
3) The final suggestion is the hardest of them all. I want you to remember how special you are, no matter what your body has done to betray you. There was a wonderful quote from 'T.R.' in our Discussion Group, “It is like being betrayed by one’s own most intimate companion, our very own body.” (11/6/2016, HFF Discussion Group) Sometimes there is a feeling of being less because you have had a part of who you taken away, forcibly, maybe by a disease, an illness or an accident, and you are left feeling less than you were before. Sometimes there are people in your life that substantiate that feeling, leaving you grasping for a sense of worth in your new normal. It can be very difficult but you are not defined by your disability. It cannot be allowed to define you, you have to define your own life!
I can’t tell you this is an easy step because it isn’t. When you need to deal with life, but can’t, or you feel taken advantage of because you cannot take control of your life like you used to, or you have to rely on others when you would give anything to do it all yourself…those are the times you have to remember… you are valuable! If those around you don’t see it, I promise, there will be someone who will. Someone is out there who will appreciate you for all you have to offer and will see how very special you are and, even more importantly, make 'you' feel valuable again. If you don’t have that support, that is where I would refer you again to Suggestion 1…a safe place of support where those there will appreciate you for all you have to offer and will see your worth, and even more importantly, make you feel appreciated again.
If you feel like you are drowning in the ‘Straw Phenomenon’, then come and join us at our Healing Fibers Discussion Group. We would love to have you!!!
Healing Fibers Discussion Group - This is a closed group for privacy so please don't hesitate to join.
Serenity in Fiber,
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