Smart and strong
I sit awake after four hours of sleep (my new average) at Spectrum Butterworth hospital. My poor, sweet, smart, wonderful Michael has been here since shortly after my last entry, Tuesday. He awoke from a nap in our home unable to swallow and with numbness in the left side of his face.That seems like a lifetime ago.
We spent six hours in the ER, five of them in the brilliantly illuminated hallway. I stole away to the waiting room a couple times to clear my head; I've never seen it so busy. They had to call people's names like at a regular doctor's office. The hallways were so conjested with stretchers and supply carts I could barely snake my way through-- and I had jumped into the ambulance without my walker!
He was finally admitted to a tiny little room that is packed with stuff-- his, mine and the hospital's all crammed into every available crevice. There's about a two foot path around his bed for medical staff to maneuver, and it seems good enough.
Suddenly a veil has descended over our future, creating a dark, hazy fog that makes everything seem cold and gray. Part of me is confident that he will soldier on through whatever lies ahead, especially with me here to refuse to let him give in. He's told me that he is being strong for me, which is wonderful.
But, as I told him in a text message (he communicates best with those because he is legally deaf), I want more than that. I want him to be strong and smart. That is what I know will be the difference between just soldiering on and coming out on top.
So far I think he's doing pretty well with that. He remembers everything about our lives before Tuesday; he's given me advice on who to call about the details of the wedding, and about financing the renovations. I can hardly believe he has room in his mind for silly things like a wine bar and paying for construction! It makes me emotional just to think about him thinking about our day.
What used to be my "happy thought"-- the wedding and Michael seeing me in my dress-- the thing I used to turn to whenever the day to day was too stressful, I've forced to the back of my mind and let be crowded out by a million tiny, heart-hurting uncertainties.
More will have to be done at home now, of course. We're going to get an entirely new air conditioning system put in to keep him cool. And something will have to be done to give him easy access to the basement. His mother and I will also be speaking to the Department of Human Services about getting him much more aid, since the hours for that were slashed last month. That would also be a relief to me, as so much of my heart and mind will be consumed with helping Michael, I won't have time or the will to think about keeping a house clean and the laundry done.
I've come up with a new nickname for Michael's mom and me-- a duo united in the common effort to make his life healthy and happy. She is the crouching tiger, ready to pouunce whenever needed, ready to snarl and scratch at anyone getting in the way of her son's best interests. I, with my extensive experience in being a helpless patient, combined with my ferocious love of the patient in this case, makes me the "hidden dragon." I will step out of the way of anyone who is doing the right thing, trying to help him. I will look on and be quiet or pleasant as long as things are going well. But the minute there is any complaint or need, I am at the nurses' station breathing fire.
Or I am at his bedside shooting "death rays" from my eyes into the faces of lethargic nurses, not just hurling insults behind their backs. I told myself at the start of this that I will not ignore my suspicions and just trust that the staff know what they're doing. Bitter experience has tought me otherwise. And I know my experiences are nowhere near as dramatic as Michael's. I just don't want that to be the reason I refrain from saying anything-- thinking I haven't suffered enough. Michael has suffered enough, long before he met me.
He deserves to enjoy this part of his life; we both do. I intend to see that happen.
We spent six hours in the ER, five of them in the brilliantly illuminated hallway. I stole away to the waiting room a couple times to clear my head; I've never seen it so busy. They had to call people's names like at a regular doctor's office. The hallways were so conjested with stretchers and supply carts I could barely snake my way through-- and I had jumped into the ambulance without my walker!
He was finally admitted to a tiny little room that is packed with stuff-- his, mine and the hospital's all crammed into every available crevice. There's about a two foot path around his bed for medical staff to maneuver, and it seems good enough.
Suddenly a veil has descended over our future, creating a dark, hazy fog that makes everything seem cold and gray. Part of me is confident that he will soldier on through whatever lies ahead, especially with me here to refuse to let him give in. He's told me that he is being strong for me, which is wonderful.
But, as I told him in a text message (he communicates best with those because he is legally deaf), I want more than that. I want him to be strong and smart. That is what I know will be the difference between just soldiering on and coming out on top.
So far I think he's doing pretty well with that. He remembers everything about our lives before Tuesday; he's given me advice on who to call about the details of the wedding, and about financing the renovations. I can hardly believe he has room in his mind for silly things like a wine bar and paying for construction! It makes me emotional just to think about him thinking about our day.
What used to be my "happy thought"-- the wedding and Michael seeing me in my dress-- the thing I used to turn to whenever the day to day was too stressful, I've forced to the back of my mind and let be crowded out by a million tiny, heart-hurting uncertainties.
More will have to be done at home now, of course. We're going to get an entirely new air conditioning system put in to keep him cool. And something will have to be done to give him easy access to the basement. His mother and I will also be speaking to the Department of Human Services about getting him much more aid, since the hours for that were slashed last month. That would also be a relief to me, as so much of my heart and mind will be consumed with helping Michael, I won't have time or the will to think about keeping a house clean and the laundry done.
I've come up with a new nickname for Michael's mom and me-- a duo united in the common effort to make his life healthy and happy. She is the crouching tiger, ready to pouunce whenever needed, ready to snarl and scratch at anyone getting in the way of her son's best interests. I, with my extensive experience in being a helpless patient, combined with my ferocious love of the patient in this case, makes me the "hidden dragon." I will step out of the way of anyone who is doing the right thing, trying to help him. I will look on and be quiet or pleasant as long as things are going well. But the minute there is any complaint or need, I am at the nurses' station breathing fire.
Or I am at his bedside shooting "death rays" from my eyes into the faces of lethargic nurses, not just hurling insults behind their backs. I told myself at the start of this that I will not ignore my suspicions and just trust that the staff know what they're doing. Bitter experience has tought me otherwise. And I know my experiences are nowhere near as dramatic as Michael's. I just don't want that to be the reason I refrain from saying anything-- thinking I haven't suffered enough. Michael has suffered enough, long before he met me.
He deserves to enjoy this part of his life; we both do. I intend to see that happen.
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