Wednesday, December 31, 2008

Wat is Happening to me?

I am bewildered,
things that I thought long dormant or gone from my life come streaming back.
I wake up in verse, wanting to write it and of course I turn here.
I want to paint, create, meet people, be with friends.
My God, has this long shell of isolation I have forced myself to live in for many years been broken?
If I work to look, I would say that the right side of my brain has awakened from a long slumber.
As a man, to feel the rush of emotional views is worrisome, but I check, I am still a man.
The dry wit is still there, the calculus and the science, the analytical thought,
but it is joined by waves of feelings and of perspectives of feeling.
A friend came by and called me a Renaissance man,
but that was before and it was only by what he could see...
Art, science, care blending in one person.
I was not yet feeling the way I am,
Now it would be ture, for there is a true blending of my heart, my mind and my soul.

Tuesday, December 30, 2008

Butterflies

One of the things I love is butterflies and some remind me in many ways of a butterfly, not at all in a negative way, but I'll relate to that in a minute. I tried to tell them, but used other words that didn't fit.

Butterflies
Beautiful to see, they seem to flit from place to place, but you must look closer.
They touch each place gently, carefully, even sweetly.
They never harm the place they touch, but rather bring a gift of life to each spot.
Those places gladly give back a bit of nourishment for the presence ,
Ah my friend, you are a butterfly, I am glad you stopped by.

Doctors

In the processes of last year, met a number of doctors, many of the doctors were during my adventure and some were beyond excellent and others were awful. I will shout out for the the best!
1) Dr. VipalhumarBhalodiya - a mouthful to say and yes Asian Indian, my Primary care doctor and if every primary care doctor could be like him - this world would be a better place. I was in the hospital for almost a total of 7 weeks during my adventure, I do not believe he missed a day visiting me and checking on my progress. He is easy to talk to and is really up on a lot of medicine. He s very proactive (though not a specialist) in things in this area that matter (Lyme disease). I have been fortunate that he has been the orchastrator of my recovery, pulling specialist when ever they are called for.
2) Dr. Rosenstien - the neurologist/surgeon who pulled of the operation that got rid of the tumor pressing against my brain stem. Not an easy operation and it worked, I lived and am able to write about it. Also good at coming by, scheduling, being informative and pulling help for me when I needed it. I would also say that for all his knowledge, he was quick to say he learned by the things I went through, That is a plus. He was highly recommended to me before the procedure and I would do the same.
3) A host of doctors at Stamford Hospital who worked with my very demanding primary care doctor to get me through things. There were some I might not think highly of, but by far, the majority were very good and informative.

Other honorable mentions:
Dr. Adler-Kline - I have known her bu reputation at the health Department as one of those very proactive with epizootic (read Lyme and other tick borne diseases) diseases, but I got to met her as part of the team treating me in the December Hospital stay. Very impressive.
Dr. Louise Resor - a neurologist called in also during my December stay. I have met her before, when she followed some serious problems David was having. She showed a lot of concern and caring for him and her follow-up with him was excellent.
Dr. Bruce Klenoff - an ear, nose and throat doctor who showed up at some ungodly hour at night during my first stay at the hospital because of some issues I was having, again at the request of my primary care physician.


For the bad, I will not mention any names, just that some who have decades of experience, know too much and are not open to new occurrences. Some showed too much prejudice ((Surgery is not medicine???? And expressed out loud in ICU). Others cling to old ideas and seem not willing to realize that Stamford, CT is in the epicenter of Lyme disease, do not seem to follow even the minimal CDC guidelines for it (yes, this has nothing to do with my adventure), and still believe the effects of said disease are in peoples head.

I guess my concept of a good Doctor is one who is proactive about things, keeps themselves abreast of new info and can talk to the patient.

Well there it is!

Monday, December 29, 2008

Stars

I went out for a walk (with David) to the Mall for a walk and a haircut (I haven't had one since July and I found out that the body kind of shuts down after a shock) and a visit to my bank. I ran into people who have not seen me since July and found out that i was missed! Each of these people (even the ones with not so good reputations) came up to me, greeted me, asked where I have been and what happened. Some of them, who were working, went out of their way to see me. I sometimes am amazed by these positive responses, I consider these people stars in my universe, shinning brightly, giving light and being light. Again i say I am amazed and feel fortunate to know these people.

preparation

It almost seems that there are lulls between struggles and then signs that new things are ready to occur before the next steps occur. This adventure is is no different and I feel that the next set of struggles are upon me. The last three have been for my life, this one feels like it is for living (or quality of life). The issues, maybe in order, my ability to eat and enjoy it, my vision, my endurance and stability. Very simple, when I eat, quickly something happens that stops me from consuming. There is a block, long before I am full and things do not go down into the stomach. They do not block my breathing, but neither do they go down and then I risk unpleasantness of losing the last few bites. I am not eating much and know I am not up to the hospital diet of 1200 calories. It does not make eating enjoyable and being out with friends is not yet pleasant. Possibly related are coughing and hiccups, both seem to be attempts to clear my airways of any residual food particles, since they won't go down. The good thing is I get to see my doctor regarding a follow-up and these are issues I will bring up. The vision issue begins with a visit to New York the 12th of January, so my next set of issues are being brought to the front lines!

Sunday, December 28, 2008

Being creative

After reading a blog of someone who has been very supportive during my adventure, I decided to be a bit creative. Her blog sometimes feels like poetry and here goes my clumsy attempt:
My fortress stands tall, the ramparts are strong and deep.
Darkness of clouds and storm are all about.
No comings and goings without my say, but in the stillness of the night or day I send a plea,
a message posted for all to see.
To my surprise, streams of light flow back,
those I have met and those I have not send messages back and the storms and clouds cease to be.

Sorry, but it seems that there is a creative side that some times must be released. I hope my metaphors of blogging aren't to transparent.

Saturday, December 27, 2008

Streching

In this wonderful adventure I have been on the past months, I find myself terribly restricted, not able to really get out of the house much (this is what I was trying to do when I had my blackout in December). So the snow and ice really do not help. Walking outside is not only difficult, but down right dangerous. Yesterday I had a chance to ride to pick up the closest people to me as they flew in to LaGaurdia. The trip was fine, but I learned that it is easier to patch my left eye for travel, even tho it seems sharper. I walked only a short way across the road from the parking lot to the terminal and was tired. I tripped slightly (no, I did NOT fall) and was slightly disoriented. This appears to be totally optical. I sat down, closed my eyes and things came together, met Marie and Scott and went back to the car with no other incident, but when I came home I was tired. Today, I had the chance to go to a few stores looking for a CD player. Walking and looking in the stores was tough. One eye sees distance than the other and the other sees closer better. At some point the eyes get tired and my hands seem smaller (a quater looks like a nickle in size as a comparision). Talk about disorientation! I ran into more than one person, by turning on the patched eye side and think I may have hit someone with my cane. I do actually use a cane, it "catches" me when I lose my location (best way to describe it). With all of this the days go on forever and I do get 'cabin-fever' and wish I was some place sunny and watrm. On top of all of this, I still have this stomach issue where if I eat just a bit to much, the food will not go down completely and eventually gets coughed back up (no it does not go down the wrong way, it goes through the swallow mechanism as far as I can tell). These are my issues to address for the New Year. I have an appointment with an optomitrist in New York on the 12th for work on the eye /double vision and my regular doctor on the 30th of December for the rest of it. It does not change my general positive attitude, but these are my next challenges as I go on my adventure.

lightness

As I muse on the incredible adventure I have been on, the ups, the downs, the fears, a great lightness settles over me. I am thankful! For some reason all the difficult and places I would call bad have a reason. They all come together and there is thankfulness. I barely understand, hardly comprehend, but it is there. It is been there for some time now and it almost overwhelms me. Now I am able to look at the rest of this strange thing I call my life. It is filled with the unexplained, the frightening, the tragic, the difficult, things which are good, things which are embarrassing, things which I have been ashamed and they all come together, not good and evil anymore, but one item which makes me and it is good.

Friday, December 26, 2008

Interesting times

One of the things that happened this last hospitalization was I lost most of my sense of taste- high salt, very sweet and spicy ( a friend gave me some home-made Indian chutney that seemed to penetrate the strange blank of yuk that coated my mouth). It finally left, but I still could not eat much (maybe just as well, I am still only about 190) and then I got to cook! One of my favorite things is to cook, sometimes I do well, sometimes not so well. Well Christmas eve was a great test, it was not overly complicated simple appetizers (from the can or just needing to be cut up) Shrimp, scallops, spaghetti and salad. The shrimp I did in a butter with garlic, shallots, a bit of lemon and white wine. Same with the scallops, with out the lemon.. Then I took the juice from that, thicken slightly and made the sauce for the pasta. It all worked, the shrimp and scallops were not over cooked, but tender and juicy, everyone raved, especially me, since I was not sure how i would do (Thanksgiving, I could not cook anything). I did it with out being exhausted (yea!) and tho I went to sleep early, it was a very good sleep. The only sad thing - I was only able to eat 4 shrimp, 1 scallop, a clam (I frogit to mention the steamed clams?) and 2 bites of pasta, oh well I'll get to eat again, some day.

Wednesday, December 24, 2008

Christmas

I have kind of strange attitudes toward Christmas. I am not overly religious about it, even tho the main issue is a celebration of the birth of Jesus, I don't particularly believe that this is THE day, but it is a great time to put the celebration. I also happen to hate winter, so any positive thing is important and this as a celebration beats every other holiday I can think of. The gift giving is minor to insignificant (read clearly here that I have no children), but the decorations are. They are bright and cheery and lift my heart nicely. I was introduced to the Italian fast (no meat) feast for Christmas eve some years ago and although I can not dream of following the entire set-up the way the Italians do, I Love setting something up that is similar or at least mimics it a little bit. I probably will not go to church this evening, the 11 PM services are to much for me this year. Love, kindness, friendship are the most important things all of this and I definitely have been given a lot of that this year. Thankfulness is big on the list too. So to all who read this, Merry Christmas, Happy Holidays and God bless you all, everyone!

Tuesday, December 23, 2008

Merry Christmas!



I usually send an internet Christmas card to those I know, because I am terrible in writing cards (and one card does it all). This year is no exception.
My first attempt had to be replaced by a second cause I had one graphic selected. (whoops!) It was a play on the words of a pop Christmas song.
Yes I still see double, so I patch one eye at a time and lose energy quickly with that along with other minor issues. Yes it is true, I have NOT healed yet, but things are working. I am suppose to get a call concerning SUNY school of optometry in NYC sometime today and try to get fitted for prism glass so I can see straight (the actual trip has me concerned).
I am dealing with what I would call a 'sour' stomach, something I never had in my life before this (it allowed me to really enjoy eating).
All my scraps seem to be rapidly healing, suddenly (including an allergic reaction to the non-allergenic flesh colored cloth tape when they drew blood).
The taste buds in my mouth appear to be returning to normal (There was an extremely bitter coating in my mouth which stopped all but the most intense flavors).
And the massive amounts of mucous my mouth was producing appear to be subsiding.
All in all very good.
One other strange thing - I have always hated the cold because it seemed to permeate every pore in my body. I still hate the cold, but it does not seem to bother me as much physically as it did.
I would definately say things are looking up!

Guests!


When StamfordTalk posted about camp Bow Wow, I also started to laugh, because this week we have guests at our house, but they got put up here cause they are relatives. When our small lab (35-40 pounds) was misdiagnosed with immature heart worms and could not be neutered, he got it on with a 8 year old chocolate lab in our house who died shortly after producing 3 beautiful children. Two of them (girls) went to one of our community, who was going to be in Virginia and Jake got to see his daugters. As you see they have made themselves right at home (and they are not small in any sence of the word!) Yes they took over the couch, wake me up at un godly times (7 AM) and the brown one 9who is dominant at home) tries to wrastle Jake (but looses) for the same here. So after a day of chaos, they have settled down nicely. They of course, love everyone, but the mutual bond between the other disabled person in our house (Eric, who is mildly autistic and also high functioning) is incredible. I actually think the lot of them operate on a different plain than the rest of us and I think it is one I would rather be at. The only thing I have to deal with is not tripping over them and their assault early in the morning. But it also means I get to take a nap in the middle of the afternoon!

Monday, December 22, 2008

Lots happening

Yea, there will probably be a couple of posts today.
After finishing my quick painting the other day, i figured it would be time to try something else. In our house we try to share the housework, with most of the cleaning being done by the person with the most time at home. Previously that has been David, but before my last incident, I was begining to pick up some of the things that i needed to do. So yesterday I decided it was time to try to sweep and mop the kitchen and sweep down the basement stairs. Okay I did do them, but it depleted my entire enrgy reserve and I had a real tough time with it. No incidents, but nap I did. So my perception that i had all this energy was mistaken and I will take it easy. Of course I was doing this cause no one was home, everyone was working and I felt I had to be useful. i think I will stick to blogging for a while.

An understanding

Perhaps the most significant thing that happen because of "My adventure" is that i got some things in order.
For many years I had been ruled by many petty fears (i.e. like what people thought of me or if they liked me etc...). Then I had to face the really big fears and i found that even those, as terrifying as they were (i.e. dying, losing my strength, losing my cognitive abilities, etc...) did not compare to the wonderful things I had been given. In some ways my heart was topsy turvey with things running my life, that shouldn't have and over shadowing the really important things.
So the most important things? In order:
My spiritual life, a compassionate heart, with Jesus as my guide, with respect for others (guide probably offends the evangelicals, but its is more important that I am guided than anything else). This actually as made thankful for many things, small and large and helps me in the other things that are important.
In light of that, compassion for those who are deemed lesser than the rest of us (disabled, poor and different). This was always in my heart, but it was not clearly executed and I got in the way lots of times.
And I still have a passion for environmental concerns. I still think there is a lot of misinformation that is being guided by political and economic pressure and not health issues, but I could be wrong (I have been wrong before, but that is for another post).

What can I say other than, Merry Christmas to all!

Sunday, December 21, 2008

Visitors

Some people came over to visit me because the other day. One surprised me, because it was the second time that she had visited and this time she brought a friend, who also surprised me. She surprised me because of the compassion she showed. I had known her as a nice person, who was fun to talk to. The compassion was a surprise and a pleasant one at that. The person she brought with her I had known professionally, he is a lawyer, who does a lot of work with disabled people. The surprise is how nice a person he was. I had kind of expected it because of the work with disabled people, but I was surprised by the depth of it. Of course this is reflection, I was just plain enjoying their company while they were here and it caused even more reflection. Each person I have my life has taught me something and if I look there are positive things to come from each person I meet. This is not dissimilar to Will Rogers "I never met a man I didn't like" statement, but it takes more work with some people.
Frank - I learned true compassion - no more to be said
Marie (Frank's Wife) - I learned that a person can be weak, very sensitive and very stron all at the same time - amazing
David - How to laugh
John - how to approach things cautiously
Walter - How to care
Margarita - How to accept a compliment or a gift graciously

This is my short list of the closest people in to my spirit -there are many others and I have learned good things from each one.

Saturday, December 20, 2008

When I wake up...



Many times I wake up with a picture in my head. That may not mean much when you do it, to me it means that I have a picture to paint. It may not be something that most of you7 reading this know, but if you ever followed the link to my old site, you saw that I did a lot of it. I sold also and was asked to do painting of specific things by people who saw some of my work. Then suddenly, I could not do it any more. It was frustrating for me cause those pictures I would do would mean very little, except frustration. I tried and what came out to me was very childish and had veery little perspective. After a number of years of trying, I finally completed 2 pictures, one I did not like still, the other expressed what I wanted it to. Today I woke up with a picute in my head and decided to try. Double vision, no ability to judge distance and having some difficulty knowing where the brush was actually toucing the paper. Today I am happy, it said what i wanted it to. It is not excellent as some of mine have been, but it is good and in my style. Now it is photography I still need to work on. Just in case you wondered, I only work in watercolor.

Friday, December 19, 2008

why am i not working!

After dealing with 4 serious months of health issues, I am finally feeling good (no my eyesight has not changed! I still see double), a question was asked me, "Are you planning to return to work?" I didn't hesitate, "of course, but not yet." This begs the question why not?
When I was at Stamford hospital in the rehab center, the vocational rehabilitation put me through many tedious fine motor skill tasks. I did them and did them well. I told her this was fine, but it is not an indication of how to do my job. Well, I am a chemist, fine motor skills are what make me, right? Sadly, it is only one very small portion of what makes me a chemist. There was a story told me way back in one of my classes about a professor, stressing the art of observation. He brought a sample into class and asked the class to figure out what it was by visual, optical and olfactory means and he proceeded to stick a figer into the jar and taste it, smell it and look at it. He then past the jar around and everyone thought they did the same as he and they all came back with different answers. When he got the jar back, he told them it was urine. They all gagged and said"but we saw you taste it!" To which he replied, "You still need to work on your powers of observation!, I stuck my pinky in the jar and tasted my index finger!" So it is with every sample that comes in. We ask are there any problems and usually people say "No!" Then we ask if there is any staining and they say "gobs of blue-green staining and my pipes keep breaking!" This is as an example, but every sample is an investigation and it takes my skills as a chemist and an iterogator to find out what is happening and what the submiter needs to know. I was told by a friend in another lab that they got a bunch of samples from the Mill river, but were not told the locations that they were taken. We would never accept samples like that. First it breaks a consideration that we are required to report danerous levels of substances so that they can be dealt with and it breaks with the entire investigatory portion of being in the job I have of understanding the samples. It also is the difference between someone who analyzes and investigates, with some one who is a technician just getting specified results. In the Health lab, we have the freedom, no the obligation to analyze things not requeted if we belive there is an issue involved. If you can not tell from this, I really enjoy my work and can not wait to be able to go back.
When, I don't know, but since I still have to turn a kn ife on its side to determine if the sharp edge is down, it will not be until I can see straight again.

Support

While I have been going through my adventure, there have been a number of people who have been "rocks" for me and I treasure each one, but the one I actually treasure the most is David.
I wrote some time ago about David, because of who he is, his brain was damaged at birth so he does not always appear to "have it all together", but he does sometimes show more intelligence than his brainier housemate (me). One of the things the doctors tell me is that the double vision that I have is not a physical problem, it is a problem with my brain. There has been enough trauma to my head that my brain can not put together the 2 images each of my eyes see correctly. I think of David, sometimes he moves into the way because he is trying to get out of the way, picks up an item next to the thing that he wanted, opens the dishwasher door a leaves it so (till he empties it some hours latter), to remind he he has to put things away still, leave a cabinet door open, because what he just took out will eventually be put back there, can not drive because of these perceptual issues and usually can not tell the left from the right. These are functions of the brain trying to decipher all the many things that are around it and failing. Seeing how well he manages his life with these difficulties, makes me appreciate his struggle even more. I just have an eyesight issue, and I am not saying it is not hard, it is trivial compared to what David has been dealing with his whole life. And while he is a bit slow and some what more deliberate in all his actions, he has a heart. While some people could not be around me after the first few weeks, he stuck closer, encourages me, helps correct the negative attitudes that would creep in, gives me encouragement, walks to Target to pick stuff yup that I can not and is always there to help me in anyway he can. Today he will walk me to my doctors (who is close) because he does not want to see me fall ever again. This is David. I will take his heart over my intellect any day.

Wednesday, December 17, 2008

Fun day

Slowly, life creeps back in... I wish I had the humor that Always at Home and uncool has, but alas I have my very scary adventure and my environmental issues that push on my heart with an occasional outburst of outrage at the stupid things that happen in this city, Stamford.
The good news, I actually am beginning to feel like myself. Save for the double vision, which is keeping from even thinking about going back to work and continuing to use up my 29 years of accumulated sick time, I also find that going out even for a few hours is an ordeal. Yes, I try to go out - with someone at this time. Yesterday it was to the Sewage treatment plants Christmas party. Funny in the 29 years of being with the city I never went till yesterday. It is the party to beat all Christmas parties as far as the city goes and there were a lot of people, good food and desserts (no liquor, its during work time). and I thoroughly enjoyed myself, but at the end I was exhausted and when I got home I napped. The only thing I regret is not being able to eat like I used to - there was a lot of good food, but I have lost 35 pounds from my adventure and my eating is slow and very deliberate. Since I was over weight, tho did not show the amount I was, this is a good thing. The adventure has done some other very good things to my outlook on life and my way of perceiving people. All in all, a good reflective time.

Monday, December 15, 2008

This is me

Seems that my progress is going. I get to see my doctors at the end of the week to tell me how I really am doing, but things feel right. I have been keeping a patch on my eye and switching it regularly so by all perspectives, I am seeing single. Except when I take the patch off - the everything is double. My strength is good, but endurance (or energy) is not. I started some small walks down the street and that seems good. Longer walks I will have someone with me. I actually feel like I am starting from a point before I was first released, but now it feels that I am on the correct path. I have had friends stop by and that has been good. I will keep you guys informed as things progress along the adventure.

Friday, December 12, 2008

Response

I loved Patty's comment in my last post, many people have given me this sentiment, but sadly I have mot obeyed yet; I guess I still have more to learn. Ont he other hand, I am amazed.
In this adventure there were very clearly 3 times I could have died, but didn't - enough reason to think I got a lot more to learn.
1) They could have not found the tumor when they did - it was very close to the brain stem and was growing slowly. And when they did find it, it was removable and not malignant (in the cancerous way of thinking).
2) During the operation, when my lungs filled with water and I come to in time to hear them say "He's not breathing!" or when I pulled the breathing mechanism out of my lungs and they had to put me out again and re -intibate me.
3) When I fell this last time - It is amazing to me that I had so few scraps and no real cuts. That is why I was curious if anyone saw me fall...I had 4 very small scrapes on the left side of my face, one on the left had and a cut on the outside of my right hand. There is almost no bruising (that I can see) and there is a small ache on the left side of my head (where I must have hit) and my left shoulder. I did not even bother with Advil with these aches, that is how slight they have been.
As I said, I am amazed!
Other than that, I scared the hell out of all of my friends who saw me in how my brain and body was functioning before they shut off the shunt. One 30 something year old man, who had known me since he was a small child, ran out of the room crying when he first saw me.
I have lost most of Thursday after the fall, all of Friday and most of Saturday morning before the very quick surgery to stop the shunt. I remember everything after that.
Am I scared? you betcha!, angry that this has lasted so long? Yep! Frightened that something could happen again at any time? Yes!
But this is still an Adventure and I am learning loads of stuff.

Wednesday, December 10, 2008

The Adventure

After months of struggle, where I have called the various things I have been going through any thing from a siege to things best left unprinted on a page and wondering if it will ever end, I have decided to call it my adventure. The reason is something the surgeon said to me as he was discharging me from the hospital. "we both are learning a lot from this one." Now I love knowledge, but I like learning new things as well. And any one who is willing to learn when situations do not turn out the way everyone else in creation expects them to, is a person I want on my side. And boy have I learned a lot, from how other people deal with their own disabilities, to the things I thought were my strong points, and how quickly they could be removed.
Thanks for listening

Tuesday, December 9, 2008

Whoops,...

Lets see there are many song that come to my mind right now...Whoops, I did it AGAIN, and many more, but my favorite is an old Gene Autry Song... "Back in the Hospital Again"; or was that the saddle?
Yes folks as I thought I turned a corner, I fell, quite literally. Lost consciousness on Thursday and well on a West Broad sidewalk. Lost 2 days because my shunt worked to well and my swelling became concave. I just got back today...after the good Doctor tied off the shunt on Saturday. As Stamford Talk said there are many wonderful people there. I would include Stamford EMS, who picked me up and brought me there. So my wondrous adventure has become still more interesting and my life continues. I would love to know if there were any witnesses, cause I would really like to know what happened, I did not see any Advocate article.