Waiting

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Waiting

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Patience is not one of my virtues. It is especially true while waiting for the results of medical tests. The doctor said she would call as soon as she had the results and that she has an "in" with the lab folks and should have the results any day now. The results have the potential to have a huge impact on the treatment plan for my husband. He just wants to be left alone with no more tests and no more results. The potential does not mean anything to him at all. I don't know if this is the progression of the brain atrophy or his belief that the impact would leave him half in and half out of his current physical status. He is cynical and burnt out. I understand but I want the results. We wait. No phone call. No email. He forgets "we" are waiting. He couldn't care less. More than likely he has the remembrance of what we are waiting for but has lost the details inside his unreliable memory bank. I am, in sharp contrast, on edge. This result may mean the diagnosis was wrong. The implications are unsettling to me. No. The implications are explosive to me. All the hours of moving on one assumption, of studying about one disease, of advocating on the assumption that the diagnosis is correct may have been for nothing. It is like finding out I took the wrong baby home from the nursery. That may be a huge leap but what I am trying to convey is that I have invested a big part of me into  learning about and understanding symptoms and progression information about a complex and unusual form of dementia and all of that may disappear in a poof of medical discovery when we get the results of a test.

I am getting back to this blog a day or so after I wrote the words above. As I re-read them it came to me that I was operating from a position of entitlement. We have insurance, we have Medicare and he has Medicaid. The fact that he could have tests performed in a hospital with trained professionals and modern equipment sets us apart from most of the world. Then we have visits with and are counseled by a highly educated doctor of infectious diseases. All of this happens in an environment of artificially cooled air, doors that open for us, elevators to take us to and from the doctor's office and a promise of test results that will have been professionally read and analyzed for us with an online summary report available and I am so precious and important to myself, that waiting is offending me. At what point did I decide I am entitled and worthy to be indulged? And, yes, we got the results today.

So it is that a humbled woman hears that the results are in and are negative. This should be the end of speculations or a trial run. But this doctor has done extensive reading since she saw us and she has found a possibility hidden in the negative result. The complex choice is before us but has morphed into a journey of possibility. Much to my amazement, my husband agreed to go to get the required regimen of shots. Fourteen days of medication received every four hours. Fourteen days in a hospital and in a nursing home. Knock me over with a feather is all I have to say on that matter.

Oops! Another day or two have passed. My husband and I are having a contest to see who can have the most medical problems. I would like to let him win and stop this game, please. Life is never boring. Never. Ever. Boring. I feel tired to my bones tonight. Odd for me but I do not feel sad or angry or any of the stuff that usually goes along with tiredness in my body. I wonder if I am numb from all the allness of things. (I typed "thighs" at first and got a chuckle because my thighs definitely have an "allness" thing going on.) We need money for house repairs, house appliances, to pay medical bills and to, well, you know, the list is long. I had thoughts of working and making up the deficit but caregiving is not making space for that yet. Maybe later. Maybe later someone will hire a run-down, mildly enthusiastic eighty-year-old woman with a gift for gab.

I am always shocked to realize I am sixty-six. Soon to be sixty-seven. Always shocked and I never factor it in when thinking of my future. I am up for it all, in my mind. I tell you a secret. I practice looking at small parts of our lives together. If I look back at the past 10 years or so I cannot bear it and if I try to strain myself to see forward into the future I cannot bear it. I can bear where I am this very moment and I can indulge myself in believing it is all going to work out. The truth is that I do believe it is all going to work out. It already has worked out for all these years. But I cannot keep that perspective if I look over my shoulder at the past or strain to see into the future. God gave me this day and He says to me in His word that today is enough. Today is all I can handle. The rest of it is none of my business. That is how I know God is God. He has the nerve to tell me that it is none of my business. Thank goodness, because I don't want any of it to be my business. I want to curl up in God's arms of love and rest and know that all is well. All is well. Right here and right now. I am eternally grateful that such a woman as myself has been able to know that God is who He he says He is and I can make bank on it.

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jan

Thank you for continuing to share your story with us. When you have peace, we have it with you. When you are strengthened, we have strength with you.