So often there is so much going on in my head, in my life, in HPSland that I wish I could share with everyone – but I can’t. I must tuck these little tidbits of my HPS experience away, at least for a while, to protect loved ones, to protect work, to protect the privacy of other HPS’ers etc.
But there are days, days like today, when I feel as though I want to shout to the heavens, “You’ve got to be kidding me! How can you expect me to live this way? This is just insanity!”
Today was one of those days, and right now I can’t get into all the reasons why.
I can say, as I’ve blogged before, that I feel as though I straddle two worlds – the real normal world and the HPS alternate universe. To expect that the two would never collide is crazy. But, we all have to live in the real world. We have to pay real bills and handle real daily activities.
We all have our coping strategies. Some are very good at compartmentalizing life and keeping the worlds separate. I am not. I don’t know why. It’s just the way I’m wired and I don’t know how else to be.
We have a lot of very sick people in HPSland right now. Recently, we’ve had several people get a diagnosis only after their lung disease has advanced greatly.
I wouldn’t be human if I wasn’t impacted by that. I feel the anxiety and the fear of these people. I have nothing to offer them other than to tell them that they’re not alone. I have no magic bullet, no cure.
And when someone passes, even someone I didn’t know well, I do grieve their loss. But it’s more than that.
I have this sense of frustration that in 2008 it still happens this way. How is it that in this day and age we are still only finding HPS’ers so late in the game? It’s bad enough we don’t have a cure, but at least if we find people before they’re sick we can perhaps prevent some of the battles that have to be fought, and better prepare people for the battles that can’t be avoided.
Everyone with HPS has albinism. It isn’t like we’re trying to diagnose some obscure disease for which there’s no tell tale sign that someone might be at risk? Why is it then, that this happens?
When I’m feeling something for HPS’ers that are very sick, and for their families, I’m also feeling something greater, something beyond that which seems akin to a ticking time bomb. Every situation like this is a reminder that no matter how great I might feel today, no matter how great my brother might feel, or my many HPS friends that now are more like family to me – that this can change. We don’t have the cure, and until then people are still going to get sick. I feel like I’m running against an invisible clock and every moment of my life wasted is one baby step further away from what needs to be done.
Why do I feel like that? Why doesn’t everyone feel like that with me? Why doesn’t everyone feel that same sense of impending urgency?
And when you feel it like this, how are you supposed to act like nothing is happening?
But there are days, days like today, when I feel as though I want to shout to the heavens, “You’ve got to be kidding me! How can you expect me to live this way? This is just insanity!”
Today was one of those days, and right now I can’t get into all the reasons why.
I can say, as I’ve blogged before, that I feel as though I straddle two worlds – the real normal world and the HPS alternate universe. To expect that the two would never collide is crazy. But, we all have to live in the real world. We have to pay real bills and handle real daily activities.
We all have our coping strategies. Some are very good at compartmentalizing life and keeping the worlds separate. I am not. I don’t know why. It’s just the way I’m wired and I don’t know how else to be.
We have a lot of very sick people in HPSland right now. Recently, we’ve had several people get a diagnosis only after their lung disease has advanced greatly.
I wouldn’t be human if I wasn’t impacted by that. I feel the anxiety and the fear of these people. I have nothing to offer them other than to tell them that they’re not alone. I have no magic bullet, no cure.
And when someone passes, even someone I didn’t know well, I do grieve their loss. But it’s more than that.
I have this sense of frustration that in 2008 it still happens this way. How is it that in this day and age we are still only finding HPS’ers so late in the game? It’s bad enough we don’t have a cure, but at least if we find people before they’re sick we can perhaps prevent some of the battles that have to be fought, and better prepare people for the battles that can’t be avoided.
Everyone with HPS has albinism. It isn’t like we’re trying to diagnose some obscure disease for which there’s no tell tale sign that someone might be at risk? Why is it then, that this happens?
When I’m feeling something for HPS’ers that are very sick, and for their families, I’m also feeling something greater, something beyond that which seems akin to a ticking time bomb. Every situation like this is a reminder that no matter how great I might feel today, no matter how great my brother might feel, or my many HPS friends that now are more like family to me – that this can change. We don’t have the cure, and until then people are still going to get sick. I feel like I’m running against an invisible clock and every moment of my life wasted is one baby step further away from what needs to be done.
Why do I feel like that? Why doesn’t everyone feel like that with me? Why doesn’t everyone feel that same sense of impending urgency?
And when you feel it like this, how are you supposed to act like nothing is happening?
Comments
I have read some of your posts. I liked the way in which you have drafted, I mean written, the narration in your profile. Interesting one !
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Naval Langa
Thank you for sharing your heart. I have the same sadness when I hear another person has been diagnosed with HPS. I think it's only human to want better lives, because that is what God intended in the first place.
I know you are discouraged, especially with how many HPSers are very sick right now. I do want to encourage you, though. This life is NOT everything that there is for us, especially if we accept Jesus Christ as our personal Savior and follow Him. We are real humans in Heaven. Man of the interests we have on Earth will be possible, and perfected, in Heaven. Imagine people, once HPSers on Earth, running in Heaven....not afraid of the sun and able to see all of the wonderful and colorful details of Nature. This Earth makes us pine for something more, because the Lord longs for us to embrace Heaven and look forward to it with joyful anticipation, not doom or dread. I hope that thought encourages you tonight.
Love,
Kathryn