Archive for the 'alzheimer’s' Category


Life Interrupted…

Life gets derailed, side tracked, oh- darn gone dirty too at times…mine got interrupted on May 29. For eight days to follow I was in a coma that only time would tell if I would come out of. For eight days family and friends held vigil. For eight days my husband watched not as the doctor; but as the husband helplessly as the other colleagues did what he would have and then some.

me… I have no recollection of what happened all I know I woke up to ecstatic faces on June 4th. As it came, it left- however it left scars that we are just assessing. And I learned the meaning of War Gaps. There will be things I will not recover, ever.

At he moment I am at a rehab facility where as a whole person I will be treated back all those parts that are so necessary to who I am.

To friends and family, and each and everyone of know who you are- thank you and yes piano, piano se va lontano…


To all My Children

Today I wrote an email to all my children, before taking the new levels of medication…loopiness city is what you would call them more now than ever. But it is the only way to give my brain rest from the migraines, that no amount of walking medication can contain.

This is not good news for the doctors that have flooded my boss’ email with requests that I return [to the O R], because my mind is currently on other intense projects. The verdict from my boss will come this very short week- since I planned a short time off from the office. Stress they say comes in different formats- or rightly said it manifests itself in various degrees. My line of work is not the kind taken kindly by most- as it is my job to point out how best to do things-better than what they have done so far… not a maker of fellowship, but hey, it is what it is.

The email to all my children consisted in my reminding them that life is a hard place if you are not prepared for it. That while I have few regrets in life I have really never wanted to look back. I have “emptied my cup” a few times and let life fill it up again as the situation merits.

But I know where my brain is headed, even when others tell me it will take years to reach that point- no one disputes the direction; we just split hairs as to when. The letter was my way of saying things that they could read again in the years to come and know whom spoke to them years ago.

The impetus to write it, came from a conversation with my hubby during one of those night outs we never miss. The reason we never miss them is because it our shared space sans the crew. The rules of engagement are simple…we don’t talk shop; we don’t gossip of extended family- we only speak of ourselves and where we are at as people. It is one of those things we learned in therapy both together and separately, that we instinctively had incorporated into our relationship long ago. And it has helped us muddle through some pretty hard times.

This case is no humdinger either, the doctors are asking me to shut down for x-amount of days or even hours to give my brain a chance to recoup. Because it is the muscle I use the most, it sometimes thinks its on steroids… and well, it has to be told to shut up, literally.

The conversation was about changes- those done through the years due to circumstances; professional changes; and the intensity those required; changes in our kids; my son’s career and how it has affected each and everyone of us- we bite our nails to the bone sometimes if we know where he is off to; or we eat them in relief when we find out afterwards and the stories are recounted for our benefit- with the caveat that he is in one piece… I can and do understand all those moms and dads out there with children in the Service- how we keep it together is a miracle in itself.

My husband was telling me how much of a struggle it has been with his compatriots to make them understand that who he is today is not only a by product of his choices in careers; but a by product of what comes from those careers and the life he led because of them. His is not nomadic- he can’t up and leave for 8 or 9 moths at a time like they do- and come back penniless to start all over. He is not one of them in that, true; nor is he one of them in the simple nonconstructive and at times naive way they look at the world. My husband’s world grew every time he took a plane to places most of his compatriots would be hard pressed to find on a map. That he has volunteered as both an engineer, as well  as a doctor in countries where there is a crisis- is a testament to his commitment to being a citizen of this world…but he knows and admits it was never always like that… he has come a long way Al-Hamdulillah.

My unwillingness to take one thing as Gospel, because someone else said it, obligated him to seek the answers as well. Our discussion on what next to do; which could very well be years ahead made him think out of the box that I was thinking of- a box that included more than at [the] time he was prepared to envision, but knew they were coming if we did or not do something. Those Insha’ Allah’s were used less frequently, because he knew many a times it was the excuse of not only not knowing but also not admitting one didn’t know. It was also the excuse of not being proactive. And he learned the hard way what not being proactive meant in a society that didn’t take lightly to maybes.

My hubby had been living his own personal hell; that he [now] felt he needed to empty out his cup of if he was going to pull through; and help pull me through this new tide of information we needed to absorb for us to continue on our life’s journey together.That night I had little to say- it was his turn to let it all out. I was just the person he was communicating to; no answers necessary.

My email to the kids was a part of that, I didn’t need nor wanted a response from them in words; but in action. I wanted them not to sell themselves short in life; life is dear and precious it must be enhanced by our actions not degraded. There was enough out there happening  in the world that was so full of degradation that they needed, as always, to take care of number one- because no one else would. Unless they lived with a person who was committed to that endeavor, but those are few and far between.

I needed them to understand that they must live life to the fullest; and I was telling them now while I could; while those synapses were  still  firing away, albeit too much at times, but which still allowed for a quality of life worth fighting for. I wanted them prepared for what was coming; life doesn’t stop while you are planning for sure. What else as a mother could I do but hope and pray for the very best for her children.

The email was as to the point as I could make it. My only regret is not being able to let them  into my mind- something I could not have physically accomplished. The feelings, thoughts, those I could and do share…for however long I can. So I leave this post the same way I left the email:

Dare to Live,  to Die is so much easier.


In Shades of Gray…

Sometimes I wonder what blogs are really all about…no really.
Are they about what you do for a living; what you don’t like to do for a living?
Is it about social activism?
Is it about your religion?
Is it about what you think you believe you are as a person; or what others think of you as a person?
Or the plain sum total of all of the above and then some?

I am new to this world of blogsphere- the word was invented and I was already too old to be hip on it- but then I joined it tentatively… There have been some good things of it…and some not so good ones-one page which recently crashed and ruined a lot of medical “history” of things people could use, or needed to know…I will recover it and its updates in the next few days….hopefully!

Then there have been the silences that only come from what this virtual world calls blurking—interesting word that- it leaves you free from ever having having to comment on anything that might remotely interest you or not…cool as they would say.

But in my particular world- silence means something else entirely. It means there is something I have forgotten…and its the silence of my mind that is telling me “there you go again”…. No I am not being melodramatic; pessimistic or anything of the like…And I don’t say it to garner a response…it is what it is.

Though I have to say I have found beautiful friends in this medium; sometimes it’s hard to convey what it means to know that things are decidedly finite.

My kids believe I will be around for ever- in a way- The eldest asked the hardest question the other day and I had to think a few minutes before answering him- “Mom, what do you want us to do…later on?” He meant how did I want my living will to read for those moments when they might disagree on what next steps to take. Sounds, and is morbid- but a necessary thing in life- My son by age 17 had already written his Last Will and Testament; and has revised it every year as he is reassigned to more dangerous places… so its a fact of life in our home. My answer, “I want to live on my terms, until there are no more terms left to live”.

My husband of course, will always be another matter altogether- when you are a doctor; you always think one more thing will do it- but he has seen me say enough before- so I know he will probably do one of those things like “The Notebook” or the Hindi film “U Me Aur Hum” and stick by their loved one to the very end…he is decidedly not a quitter. Al-Hamdulillah!

So why am tonight of all nights, up instead of resting- while the whole house softly snores, creaks, groans away? Well because I am not getting any further from where I was when this all started…progression they say depends on the person’s genetics (That’s a bad batting average right there), their over all health and activity level… My Neurologist says that what she has seen is an up swing in brain activity for me- for now… But what I feel is different… I am feeling different. Maybe Allah’s way of telling me to prepare for a new turn, twist, wrinkle, or smooth surface- I am that kind of Muslim- the one that tries to listen to the call however it may arrive…

My son says its like those cool places between where the sun shines on things and the shadows -you walk from one to the other and as you walk you notice the change in temperature…I am feeling the change in temperature…and so is my husband- the way he looks at me at times; the way he holds my hand; the way he’ll touch my head…or the way he will freak out if, like today, I forget to put my meds in my purse.

I am, for all intents and purposes fully functioning person- my career and my boss can attest to that- but that I put in more effort everyday- you bet; that I need more hours to sleep; yep! Don’t get me wrong; I can shop like the next Tim Gunn imitation; love to travel every chance we get; enjoy classical music (Bach in particular; Andrea Bocelli, YO-YO Ma) but there are tiny things that are grayer now than they were before…and maybe that is what is most bothersome. And gosh I can’t put my finger on it- but I can’t do a Scarlet O’Hara- And think about it tomorrow…I might not remember! LOL

That I am OCD in my own particular way, says the doc, helps me be more in tune with my self; because I am constantly looking for ways of staying ahead of this particular game. Trying to stay in “the zone” for the longest period of time as I can…

So I read; I write especially at work; I do this bit of blogging- for now Yoga has been banned for me- so I will do Ta’i Chi…And I remember my other family members who had or have the same condition- My grandfather who left behind 120 odd journals in beautiful green fountain ink- a testament to his and our lives; my recently passed away aunt who left each and everyone of us a memento as she encountered them and affixed names to them; to my dear aunt Lila who though still alive is now locked for long moments at a time in things two, three, four decades passed- but will ask for my son (who has always made her laugh on the silliest of things) every ten minutes or so…we give her a fresh version of the last answer every time. And go to family reunions whenever time and place permits…I have four Ya-Ya friends that are threatening mass destruction on our friendship if I don’t come visit them soon- knowing them they will be knocking at the door pretty soon- if not sooner.

So tomorrow its Chinatown; herbs, roots, acupuncture, deep body massages…like I said anything but surgery for that other aggravating problem.

So,  I will continue to live by two things: “Trust in Allah, and tie all your camels” and “Dare to Live, because to Die is so much Easier”


Chinese Medicine Man…

Today one of the Cabinet Members of our Administration took me to see a Chinese Medicine Man a Master re-known around the world- but very humble and unassuming, down in Chinatown.

He heard my complaints especially since my neurological problems are worsening- and honestly, I will try anything but surgery to get better… He check my pulse and also other aspects of my body- my eyes- my tongue; and then he had me sit with my back to him in a “warrior” position- where you put your hand on your upper thighs and then open your back as your arms also open outwards…

He started massaging my neck and worked his way down into those vertebrae that have been causing me so much trouble- The message was a deep one and I felt every bone, every tendon, and every muscle.

Then I was “manipulated into various positions while sitting. When I got up he asked I felt- I have to says the pain in my neck was less…Then came the acupuncture- I have high tolerance for pain- so I didn’t feel the more than 100 needles he stuck all over my body. He then put on a very hot light to shine on my body and said that I would soon feel sleepy- I do not think he had finished the sentence before I was out like a light! LOL

He left me like this for about an hour it seemed- then in the same sequence the needles were inserted they were removed.


I felt a little numb and wobbly but he said that would pass. Next was a leather like patch that was headed and put onto the cervical areas that were affected…I am to keep in on always- I can take it off to shower and then heat it up with ah hair dryer and put it back on.

Last were three sets of herbs and roots; each packed fro every day I was to drink the one cup that would be made out of four cups of water put in for it to boil then simmer. I was to return on Saturday for my next treatment.

When I returned to my office, I felt a bit stronger; he had told me to continue my medications until me own doctor started to bring the dosage down- that she has already started.

People took one look at me and said I looked to peaceful and rested…I felt it too! The Chinese Medicine man did tell me I would be very sleepy at night, and to drink the tea right before bedtime.

I will keep you posted on my adventures with alternative medicine and how it affects my condition.


U me aur Hum and The Notebook

The mind is a mysterious and spacious place. Its where you think, dream, hope, despair, and forget.

The mind is capable of processing a billion thoughts a minute or none at all.

To love and be loved -those are things we aspire to… But to love someone that cannot remember you ever being in their life is the one nightmare I wish upon no one.

The way a loved one repeats the conversation you’ve had twice in the past hour… Those frustating moments when they try to remember an important fact that refuses to connect with their tongues… The many times you repeat your name to the “and you are…?” The picking up of things that are left behind because your loved one doesn’t even realize what is and isn’t…

Your heart extingushes by angonizing spurts the hope each time the mind turns the switch of your loved one’s memories off, and that glassy look that only reflects you- looks at you but does not see you…

You can’t even remember what the doctors say to you about genetics; about generational gaps; about dementia (though your agonized mind says you must be in the grip of it if you can’t remember)… But you do remember its just the stress that’s blanking you out- your reassure yourself… Still…

Alzheimer’s a soft, pervasive and progressive disease that slowly but surely robs you of your memories, your life even as you continue to live in a shell you don’t even know you are in… A disease that is as destructive on them as it is on you…

We watch each other for signs; we have each other tested because one is life; two is mistake and three or more is genetics on a rampage…

So we continue-to keep in touch; to share memories while we can; to retell the stories even if we know them by heart, and repeat how much we love each other while we still can…

We have always been picture takers and now more than ever we collect them because not to means we will forget sooner rather than later…

“U me aur Hum” write it in a notebook and keep it safe for those days…

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