Washington
DC
Wow! My anxiety
has sky-rocketed! I realize that this
blog is not about the neuroses of David Hilfiker, but surely there is something
here that many with Alzheimer's experience.
One of my readers recently emailed me. She’d been diagnosed with Alzheimer's in
2008. Recently, though, she was thoroughly
retested and the results were completely normal! The previous diagnosis had been in error; her
symptoms then had been significant but temporary, caused by something else. She didn’t have Alzheimer's. She wrote, “The news is wonderful for me and
my family, but I feel as if I have lost my moorings again.”
After almost a year of believing that I have
Alzheimer's and now finding myself with some normal test
results, what if I’m not heading for dementia? Or, worse, what if my symptoms are imaginary,
all in my head? Then I lose my sense of
self. My identity created over many
months, accepted by friends, readers, and myself, fades away. What if I’m not who I thought I was?
Since I found out about the test resuslts last week, I’ve
been more anxious about not having
Alzheimer's than having it, which doesn’t make any logical sense. A more appropriate reaction might be:
I don’t have Alzheimer's? How wonderful!! The sentence I’ve been living under has
disappeared. Hallelujah!
But, no, I feel anxious. My situation is different from my reader’s in
that there’s no evidence, yet, that my cognitive impairment has changed. Nevertheless, I also feel unmoored.
Just to be clear, I still believe that my cognitive impairment
is real and progressive and either is, or will progress to, Alzheimer's. But the uncertainty itself has unmoored me.
I’m sure I’m not alone in my feelings. As I wrote in the previous
post, anyone with Mild
Cognitive Impairment experiences a similar disorientation, in large part because
of the uncertainty about exactly what their diagnosis will mean for them. And all of us with progressive disease will
experience continual changes in who we are.
The emotional/spiritual question that we face is: Can
I retain equanimity in the face of such shifting in the sense of self. Can I recognize at a deeper level that my
self is always changing and let go of my attachment to whatever the current sense
of self is? I’ve written about this
before (here
and here),
but this feels more wrenching. So, it’s
an even greater opportunity for spiritual growth, for learning to let go.
In clinicals once, I had a patient coming from same day surgery, this guy was laughing, crying, laughing, clapping, etc. He'd had an endoscopy to see how much cancer he had in his stomach. they found an ulcer. He was over the moon.
ReplyDeleteI one had a cystogram of my bladder. Before they give you the injection, they make you read all of this paper regarding allergies to seafood, iodine, etc. You read these four or five pages, then sign that you have read them and the possibility of death if you are allergic to iodine, scares the heck out of everybody. So I'm laying there, the doc has the syringe in my heplock, and I begin to get dizzy. I said, "Stop! I'm getting dizzy, what if I'm allergic to iodine and I didn't know it?" the doctor very calmly said, "look at this" I looked at the syringe that had not been pushed at all. The syringe was full. I felt like a fool. Laid back down and said, "continue."
Everybody reacts differently. Everybody's life challenges and enjoyments, loves and hates, all combine to be the people we are. Its okay to be a bit discombobulated. I know I would be. But just relax and enjoy. If you had a minor stroke and you will never get any worse, that could be wonderful. If you do have AD, you deal with it when you must. But until then, LIVE! Enjoy!
There is the self and the Observer of the self, this eternal bit of you. Can you still get in touch with this part of you which is observing the self slowly losing it?
ReplyDeleteYou don't have to answer this question. But I just wonder.
Sending you thoughts and prayers of grounding in the miracle that you are.
And thanking you for sharing here so authentically how you feel.
Thank you for sharing your thoughts and feelings so eloquently! I can't imagine how you must be feeling about this roller coaster. Your current situation reminds me of what Eckhart Tolle described in his book, The Power of Now. He talks about the suffering that occurs when we dwell on the past or worry about the future and the only real thing that exists is this moment. All we have is this moment. My thoughts and prayers are with you!!!
ReplyDeleteThank you for this story. Very, very interesting. The brain is an amazing thing.
ReplyDeleteDavid, I have been following your blog with interest and affection. I've been praying for you and will continue, the more so with the signs that perhaps it's not Alzheimer's after all. But I have been especially moved by your spiritual journey and my prayer is that you not lose the peace that has come on you with your surrender -- which I also pray myself to receive. Thanks for doing this blog which is benefiting so many of us.
ReplyDeleteCould you be experiencing uncommon side-effects from the drugs you take for depression?
ReplyDeleteWhat you experience of yourself is a story, what you really are is being. And that can't be known as an object. So who are you? What you can miss, you are not. What you can see/feel/hear/smell/taste you are not. The only certainty is that you are. You don't have to prove it. You know that you are. Losing the story (and the story itself) can be a nightmare when you believe in the story. But the belief is also a part on the story. And the belief that you are responsible - or not - is also a belief. It's all concepts, and concepts are never the actual being. They appear in what you are....
ReplyDeleteRobert
Dear Dr. David,
ReplyDeleteOf course you are discombobulated. You accepted ownership--and were brave to do it publicly--of the Alzheimer's diagnosis. That was and is enormously important to dispel the unfair stigma of the disease. We need you to keep writing, regardless of the outcome. We readers (and potential Alzheimer's patients) are learning many things through your experience and its unexpected consequences, not the least of which is reminding us that life is full of good surprises!
I find your writing very helpful in taking care of my mother. Thank you for your honesty.
ReplyDeleteI have a dissociative disorder for which I have been treated for many years and I have found that in my worst state, my mind seemed very close to what my mother experiences now in a late moderate stage of dementia (from what ever cause). I am in no way saying that you may have a dissociative disorder!
But my favorite quote of the last decade comes from fiction: “Of course it is happening inside your head, Harry, but why on earth should that mean that it is not real?”
― J.K. Rowling, Harry Potter and the Deathly Hallows
I think you have a fine mind. How are you so sure that your path leads past globial trasia anemia of types. I am not new to experiencing some of those I love have cognitive impairments. I appreciate your honest candor but but hearing of your symptoms would be helpful as well as it is very difficult to diagnosed early stages. Also as a learned individual how do you feel obummer care will address this disease? Now some humor. A dear old friend Carol cared for Ernie her father in law. On one of their many outings Ernie finally made a break for it going walk about. This was feared but had finally happened. As it were after much searching she found Ernie at the pizza parlor. She entered and to her relief and her dismay if looks could kill Ernie had shared how his mean daughter in law had left him for hours in a hot car. So upon further explanation when the police left she offered to pay for the ice cream and pop they rushed to give him. They all said they had not a clue that Ernie was experiencing a problem quite the contrary he was articulate and witty. Thank you for sharing. Also my brother a successful attorney in Santa Rosa, Can had fallen wind surfing hit his head on board cracking his helmut then fell on Mt tamalpios running the course. They had for years though cognitive ended up ms. Such things as common to men. Blessings to you and yours!!!
ReplyDeleteIn response to your comment, I can't resist the opportunity to say that I believe the Affordable Care Act (what you call "obummer care") is a major step forward in providing to everyone the same good health care that I receive and therefore will provide better care for Alzheimer's patients.
DeleteI always wonder at doctors who give a diagnosis without doing all the possible tests first. It puzzles me that such a life changing thing would be given without them. would suggest to anyone who has not had every possible test and been given that diagnosis to insisit on them or get a doctor who will.
ReplyDeleteThe highly specialized PET scans that I've received over the past several months are not yet part of the standard evaluation of people with mild cognitive impairment (MCI). Not only do they cost over $4000 each, but it is not yet clear how good they are at diagnosing the causes of MCI, as in my case where the results of the tests have so far only confused things. Insurances, therefore, do not yet cover them ... as seems appropriate to me. It's also important to recognize that, since there is no treatment for Alzheimer's, pinning down the diagnosis with more exactitude doesn't change what one does.
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