To set the scene, you’re at the doctor with a complaint. They diagnose the problem and your first reaction is relief (that you’re not crazy and it’s an actual ‘thing’) followed closely by a practical “okay, so what do we do about it, how do we fix this?” You’re given your options (there are usually at least a few) and maybe a plan is set forth to rid you of this issue, or at the very least, to deal with it. Disgust, fear, sadness, anger, frustration, depression, all of those feelings may come later, and none would be unexpected, depending on the diagnosis and prognosis.
So, that covers what may be a typical scenario, but there are other scenarios, aren’t there? Ones where the outcome is less positive, less reassuring, and far, far less okay.
You attend a hospital clinic appointment for a years-long issue (an issue which was, incidentally, discovered quite by accident when receiving annual follow-up for an unrelated and non-fatal condition). While the doctors have never been able to pinpoint or explain to you how you ended up with this very rare (you meet exactly zero risk factors), and likely non-genetic yet life threatening condition, you have so far endured years of treatments to manage the situation. All the while, never imagining that the mystery of the ‘why this, why me and how?’ will never be answered, but there is it. No answers.
It is while you are in attendance this latest appointment, that you ask the question “so, what can be done to get rid of this?” You are told, for the first time throughout the entire ordeal “nothing. There is nothing we can do for this particular problem.”
“Can it get bigger/worse?” You ask.
“Oh yes, it could.” Your clinic specialist physician says immediately.
“So, I’m a ticking time-bomb? The walking dead, essentially? Nothing will help? No treatment? No laser, surgery, medication, nothing will make this go away?”
“No, nothing. It could stay the same, it could change. We have no treatment options. Please make your next clinic appointment on your way out.”
Now, before I continue, this is NOT happening to me, my husband or my children. None of us are the patient in this scenario and I will not reveal the person’s identity out of respect their privacy. I am, however, a completely entangled and emotionally devastated ‘other’ receiving this news and I am, for the first time in my life, absolutely devoid of coping strategies or ways to either help the patient or myself to deal with the twisted rainbow of emotions, the paralyzing fear and grief upon hearing this news. If I can’t speak the words out loud, or even think them in my head without crying, how am I expected to deal with this?
What do you do when you are given NO hope? How do you cope with the news that not only is there no hope, there is no fight? There is no chance to over come, that no matter what, nothing you do or don’t do will have any impact on the outcome?
How do you prepare to be left? Knowing full well that everyone who is born, everyone who is in our lives will one day die, how do you prepare knowing that it may not be from very, very old age, but rather an unexplainable, unforgiving and untreatable malfunction from within? How can there be no hope?
I can deal with a lot and I have dealt with a lot. I have survived a lot and I will continue to survive a lot. What I don’t know, what I can’t figure out is how to deal with any of this without any hope. I can’t figure out how to survive any of this without even the smallest possibility that it’s all going to be okay.
This is all still new information for me and I am processing while absolutely losing my collective mind at the same time. My immediate rational reaction, to search for studies, treatment, other doctors, specialists, third, fourth, fifth opinions have been exhausted and now I am just broken and sad and trying so very, very hard to pull myself together. My being broken hurts everyone I love and I know that if I am not okay, then none of them are okay either but honestly, how am I going to fake my way through this one? How do I hold on to or even find any hope when I’m told in no uncertain terms that there is none and the only certainty is the loss of this most precious person from my life?
I am open to any and all suggestions, because I got nothing on this one.
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