Instead of a rant
Rather than release the frustration I feel about the healthcare system by describing my recent tribulations and anxieties concerning the future, I thought I would include this link to a short documentary I watched on the NY Times website while I ate my lunch: https://www.nytimes.com/video/opinion/100000005868795/how-healthcare-makes-disability-a-trap.html
The emotions expressed by the filmmaker--facing challenges that make my life feel simple in comparison--are incredibly truthful and sad.
I was talking to James this morning in bed about the anxiety dreams I have every night. It makes me reluctant to go to sleep. I told him that I cannot fathom how a person would be able to navigate the healthcare system on one's own, in the midst of a debilitating illness or recovery process. We have had many people supporting us within the system--registered nurses, psychologists, social workers, doctors, therapists, attorneys--and even still, I have invested so much of myself to advocate for James's well-being through-out his illness and recovery.
I have seen the future of our old age and it is now.
James was completely frightened the other morning after we discussed a decision I had to make about possibly hiring an advocate to assist James while I transition back to work. He contemplated what would happen to him and Imogen if I died or became ill. I had to sit down on the couch because the reality of it was too enormous. I could not answer him sufficiently.
He would be in a shit hole of trouble. I did not tell him that but that was my first reaction. He would have no income and no means to take care of his own life. That's the truth of it. I told him that I would create a safety-net map so that a friend or relative would temporarily step into my shoes until everything was settled. That "everything" is the rest of his life, though.
I cannot die.
Knock on wood.
The emotions expressed by the filmmaker--facing challenges that make my life feel simple in comparison--are incredibly truthful and sad.
I was talking to James this morning in bed about the anxiety dreams I have every night. It makes me reluctant to go to sleep. I told him that I cannot fathom how a person would be able to navigate the healthcare system on one's own, in the midst of a debilitating illness or recovery process. We have had many people supporting us within the system--registered nurses, psychologists, social workers, doctors, therapists, attorneys--and even still, I have invested so much of myself to advocate for James's well-being through-out his illness and recovery.
I have seen the future of our old age and it is now.
James was completely frightened the other morning after we discussed a decision I had to make about possibly hiring an advocate to assist James while I transition back to work. He contemplated what would happen to him and Imogen if I died or became ill. I had to sit down on the couch because the reality of it was too enormous. I could not answer him sufficiently.
He would be in a shit hole of trouble. I did not tell him that but that was my first reaction. He would have no income and no means to take care of his own life. That's the truth of it. I told him that I would create a safety-net map so that a friend or relative would temporarily step into my shoes until everything was settled. That "everything" is the rest of his life, though.
I cannot die.
Knock on wood.
I feel exactly the way you do every day, Jennie. I'm very lucky to have a partner who can fully take over care for Gabriel if anything happened to me but the prospect of anything changing is daunting - losing one income, Manus having to manage day to day details and therapy and to plan for Gabriel's future on his own. Maybe when you have talked with friends and family about this issue and have the groundwork for a plan in place, it will feel less overwhelming. We will help you however we can. xx
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