We like to think we are surrounded by angels, but when it comes to the complex dance we are engaged in here, born out of complex hypersensitivities and multiple system dysfunction, even the angels must slow dance.
It is intricately complicated, learning how to live and communicate with someone whose communication pathways are broken on every level.
The one who cannot think, move, remember, speak, write, tolerate sound or movement, easily or at all, is drawn into a potentially fraught and delicate relationship with the other:
If the person has to wait in agony, so you too need to wait, patiently and peacefully, hopefully, despite any personal frustration or need.
1.If the person cries out, you feel it deep in your guts.
2. If the person is suddenly confused, you too experience the uncertainty of confusion, not knowing exactly what is required.
3. If the person is cross or distressed, it breaks your heart.
A fragile relationship is born over time, one that wends a path between silence, stillness, movement and sound.
That path is not easy to navigate, it can only be entered upon when guided by a true heart and the most sincere commitment of love.
If the wrong thing, said too loud or done too quickly, in the wrong moment, in the wrong way, harms the other, how is it ever really possible to reliably know, what is the right thing to do and when to do it?
You have to become adept at listening, looking, seeing, noticing, remembering, comprehending, learning.
These are your tools.
You both have to remember that powerful emotions are in play here.
If the other person might be harmed, by any attempt at communication, whether through touch, word, non-verbal signing, phone, email, writing, text etc, then great thought and kindness, compassion and intentional awareness, sensitivity and perseverance are required.
The impact of getting it wrong unintentionally or of not knowing the best or any way, to proceed, can be devastating for both people, in different ways.
A failure to wait long enough, connect or comprehend adequately enough or react quickly enough to the person, can trigger a cascading series of physiological events that pushes the hypersensitive person into internal and external oblivion; the resulting deterioration can be catastrophic.
What needs to be remembered, by both, yet may not be possible or realistic in any given moment, is that:
* If I have to wait, you have to wait.
* If I am hurting physically, by the nature of my symptoms and emotionally, by the devastation of those symptoms and the limitation, suffering placed upon me by them, then you too may be hurting emotionally.
* If I feel hopeless, then you too may feel it.
* If I feel helpless, then you too may feel caught up in it.
* I want to say something, yet I cannot speak it, you want to know things but you cannot ask, directly.
* I need to express myself, you need to understand.
* You need to be able to help me, yet I cannot necessarily tolerate it or comply with need.
* I want to be creative but I cannot access any part of me, you want to express yourself, but are limited by the limitations imposed on the environment by my illness.
* You want to be with me, I cannot physically tolerate it.
* I want contact, comfort, communion, but I need to be alone to cope.
* We want to be together, but we have to be separate, mostly.
* I want to explain the issues to you, but I cannot convey them, as I cannot think, speak, articulate, remember, be in anyone’s presence at all.
* You reach out to me, but the brokenness in me can misinterpret it.
* You do your best to be as quiet as possible, but I need total silence.
This is truly tragic, yet somehow we endure. Somehow we find strength.
Somehow we remember who we are....and that is love.
We are both potentially stuck in isolation from each other.
We both have to make huge, unimaginable effort to work it out in order to find moments of connectedness.
And so we dance around the impossibility, created by the acute hypersensitivities, the literally, demolishing, symptoms, in order to find moments of access.
This is the context in which we live, daily, moment by moment.
We do not know whether a voice will be tolerated, a question answerable, a touch bearable, a look possible, a shared moment of joy achievable, because of the physical, mental and emotional barriers created by the destruction of the disease; the sheer level of physical pain that creates an almost impenetrable barrier.
Yet still we hope, still we seek answers, still we persevere, held by a bond of oneness.
Here we both have to find a compassion and understanding for ourselves and each other, which can take time to find and convey, which may feel or seem lost; though truly, it is only out of sight.
For the person who cares and is forced to wait, by circumstance rather than inability, living with the person who cannot do anything, can be extremely difficult.
The simplest easy thing, that could be done or said in a jiffy, cannot be done, cannot be said. You are both dragged into an unnatural slowing and stillness of everything.
To get into that still space, when coming from a busy world and really comprehend it, is incredibly challenging, if ever totally possible.
The understanding that is required to engage safely and harmoniously, is multi-level and needs constant honing and divining.
Many might not bother, may not know how or may just ignore it.
Maybe it is easier not to do, than to try to do something so hard and out of keeping with other people’s general normality; yet the destruction that inevitably follows, if no effort is made, is devastating.
The person’s difficulties of communication, interaction, receiving help, flowing together, achieving anything, in part, become your difficulties too.
You have to find a way to accommodate their difficulties, so these difficulties affect both of you. Nothing can be done simply, freely, easily, as it should be or would appear to be.
This is a paradoxical disease with paradoxical reactions - touch hurts, perfume assaults, answers cannot be literally, cognitively found, to the simplest question, in the blank, empty, darkness of brain fog.
So nothing is predictable, tolerable or easily received; the level of impact unknown in advance.
So many things are lost, on so many levels, from simple joys to complex activities, from social events, to celebrations, because virtually everything is not tolerated, is not possible or sustainable.
The losses go both ways. As a consequence, the concept of ‘togetherness’ needs to be redefined in utter simplicity.
The danger is that you are inadvertently incapacitated by each others incapacity to comprehend, both what is going on and what is needed.
You live in the same environment, but you live it in totally different ways, with totally different experiences of the same thing.
For one, everything is easy, accessible, possible, potentially doable, but for the other, nothing is accessible, even if it is right before you.
The person who cares, has to learn to see with empathic eyes, has to try to comprehend their own impact and what it is like, in that invisible world that the other person exists in.
The person who is in need of help, needs also, to somehow convey, if or when possible, their own understanding of the situation, the relationship and their caring for the other person.
How does anyone see the invisible?
How do you sense and feel what cannot be spoken or conveyed?
You have to attempt to, when you live with someone who is profoundly disabled by everything. That is the challenge. A pretty high bench mark to aim for.
Linda and Greg Crowhurst
January 2020


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