nettes”

Intro 1-4
Chapter 1 5-37
Chapter 2 38-60
Chapter 3 61-84
Chapter 4 85-116
Chapter 5 117-140
Chapter 6 141-152
Chapter 7 153-185
Chapter 8...........186-199
Chapter 9...........200-204
Chapter 10.........205-208
Chapter 11.......209-217
Chapter 12..........218-235

intro

All these things and more happened to me over the course of several years ...it was important to me to get them down in writing before I lost them, because nothing (even in my memory) is cast in stone.


Dear Senam and Steve,
It has been wonderful working with you on this project. I hope that I did not bore you too much. All of these things and more happened to me over the course of many years. It was important for me to get them down before I lost them, because nothing (even in my memory) is cast in stone.

chapter one

My first memories are from Dedham, but even so, I don't have a memory of Nobles, perhaps it's because of the neighborhood that I lived in. I later learned that Nobles was on the opposite side of a major highway.

I was born in Cincinnati, Ohio on May 7th, 1950. I remember very little about Cincinnati because my memories are those of a 5-year-old, and tend to be a bit lacking in the details. But there were several key things that truly affected me.
One thing that affected me was the emotion of being alone and responsible for myself; I still wanted to be a baby, because that was so comfortable.
I was also frequently affected by the creepy weather with lowering skies and tornadoes complete with hordes of crickets. At times the weather was almost biblical!
My mother was very unhappy to be living in Cincinnati. She did what most women did in the '50s -- tried to fit into their new husband's lives, and forego their own dreams (remember, this is 40 years ago). But she never gave up on coming back to Boston, where she was originally from. My father also wanted to return, and he was a guy in a bit more control of the way things were happening.
Eventually, they made it back to Dedham, Massachusetts where I lived for a another three years. I then moved West to Springfield, when I was about 7. Mr G interrupted her
My first whole memories are from Dedham, but even so, I don't have a memory of Nobles, perhaps it's because of the neighborhood that I lived in. I later learned that Nobles was on the opposite side of a major highway.
We were a middle class family that lived in the Green Lodge area and perhaps there was no reason to know. I never knew at that time that there was so much more beyond my neighborhood -- I was just a kid!
My father was a teacher and basketball coach, and that's a tough way to pay the bills -- I know, I was there. My mother worked as a bank teller and was very frugal -- frugal to the point of denial. There were no summer camps, no frivolous day trips, and no excessive gifts or clothing purchases, but she provided a comfortable, if not wealthy life that I could lead.
Being in Boston, I am exposed to a different class of people. I have never met as many highly educated and experienced people as I have in the past seven years. Strangely enough, when I was growing up I never thought my education was lacking in any way -- in fact I still don't, but (and that the really big but) there was a lot that I didn't even suspect! For instance, one of my fellow residents was a professor at Harvard, and we sometimes have some quiet pleasant conversations about the strangest things. We had one conversation about parasitology, the study of parasites. We started on that topic because some of his relatives had just returned from Africa. And I had to ask "what is parasitology, anyway?" And he said (softly) "parasites" and all I could say was bugs (duh!). I couldn't conceive of making that my life's work, but here were some people that did.
There is a shrub that is evergreen most of the year but around November, its foliage undergoes a dramatic change. But the bush is a sparkling green for most of the year and when healthy, it blends into the foliage around it, but at the end of the year, it puts on a spectacular performance by turning bright crimson like it's saying "hey, look at me, I'm here!!!” That is not like I would behave at all, since I've always been a plain brown wrapper type of a person that was funny, and that there must have been a genetic slip up (just like me). There are only two of us kids in the family, and I was first born, but it seemed like my parents got it right the second time three years later, when my brother was born with blue eyes and blond hair -- he came gift wrapped!
I can appreciate the flush of fiery crimson. But his 20-20 vision wasn't noticed until he got hit in the face with a baseball (hell of a way to catch a fly ball), and my parents took him to have his eyes tested. And I thought to myself "Well, Golden Boy isn't perfect, so I don't have to feel like such a mistake, because my vision was better than perfect.
It didn't really matter because he still looked good, even though he is as blind as a bat (that didn't show). So that was easy to fix, a pair of glasses and a soon to be a better than average baseball player, and an excellent hockey player with contact lenses. Everyone loved him, and all the relatives fawned over him and congratulated my parents on what good fortune they had to have such a beautiful child. Was I jealous? Does the sun set in the West? Of course! I just became more secretive, because nobody even listened, anyway. Of course, I used to take him on when he was small enough to be picked on, but after the age of about 15, he got too big to push around. By that time I had gone off to college, and he had gone to prep school. He went to Deerfield Academy, on a full scholarship that included hockey and baseball -- I guess he was a smart kid, after all.
I had thought that he was such a dweeb! Or that's what I thought, just because I was his sister. He stayed in prep school and loved it, graduating to receive a scholarship at Princeton. I didn't think much of it at the time, because I was so far out of the loop that my opinion scarcely had any effect. My mother was so proud of being able to have a Princeton decal on her rear windshield, right in the middle, I didn't dare to mess up the arrangement with a UMass sticker -- it's so commonplace! I did love my years at UMass Amherst, because everyone seemed to be so much the same, Boston or Brooklyn -it didn't have anything to do with whether or not they were good dorm mates. (I didn't however get to rub elbows with children of movers and shakers in our country/economy).
After I graduated from UMass, (nothing brilliant, just average) I threw myself into a battle between me and my parents, because I wanted to get married right after graduation to a guy they could not stand. But I was adamant about getting my way, and I forced a quick, cheap solution to everything -- I would pick out the church, and have a reception at home, make out my own invitations (because I used to be pretty good at calligraphy and a good paper and pen were a lot more useful to me, than a big wait at a stationary business). The only thing my mother did was arrange for a caterer.
I should have gone to Las Vegas and eloped, but I just didn't think of it at the time. At any rate, we were married for about seven years, before splitting -- my fault, completely, because I was trying too hard to be a new emancipated woman and I think I went a little overboard! Anyway, it all seemed to work out in the end.
Anyway, my "final wish" is to be cremated, nothing fancy, I'm not a femme fatale, just a "plain brown wrapper" type and the ashes could be saved to pour in a hole and have a Burning Bush planted on top of it.
What started me thinking about it was I was requested to register my "final wishes" I guess that is a nice way say "what do you want to be done when you die?"
It would be kind of neat to have a tree planted in my memory, though. Having a Burning Bush planted in my memory would be so much more raucous than I was in my lifetime, but maybe I could be beautiful for a while. And I wouldn't have to feel so "plain brown wrapper" anymore.
I have all kinds of excuses not to do anything or everything or just this writing piece because I am in a wheelchair. Therefore I can starve to death, rather than do something out of the ordinary, challenging, or enlightening! This is an entirely different way of thinking, and I hate to even admit it to myself,but that's what it is!

a Colleen Powers Original
chapter two: my art precociousness

my art precociousness was seized upon by my grammar school teachers, and I was asked (expected) to do many of the assignments that were thrown out to us as “class projects”, I enjoyed the notoriety given to me


In 1957, I moved with my parents to Springfield- to another school where I had to make some new friends. I became friends with one of the kids that lived down my street, and I soon made some more friends because of her and her younger sister. Girls liked to hate something—in fact, we were comrades in hating her younger sister, which made the person in question all the more difficult to deal with (-the younger sister- she’s probably a “drop-dead beauty” by now, or was one because now she’s in her late ‘40s.
Anyway, my art precociousness was seized upon by my grammar school teachers, and I was asked (expected) to do many of the assignments that were thrown out to us as “class projects”, I enjoyed the notoriety given to me as a stranger from another school system.
I remember recreating a Japanese Temple using a donated refrigerator crate and some leftover tomato packages. It may sound strange, but it worked! It was so successful that it even made the newspaper! My parents used to keep pictures of the darn thing on their refrigerator, but I only thought that they were embarrassing me.
I didn’t think that making a mock-up of a Shinto Temple was what I was going to do as a serious type of work (and I was thinking about Serious stuff when I was 7 years old) so I took the photograph off my refrigerator door and threw it in the nearest “round-file”.
I think that I used to ditch most of my work in the trash barrels when somebody started to rave about them because it embarrassed me. I just didn’t know how to take a complement. There is probably a reason for that, but I don’t want to go into it—too much psycho babble!
I always wanted to be a great artist, but lots of things seemed to get in the way—like money, housing, taxes, etc. I lived for a while in an Artists condo, but it began to drive me crazy. Because I wasn’t cut out for the Bohemian lifestyle, I distanced myself from any type of anchor to the arts. But I am getting ahead of myself, that stuff didn’t happen till I was in college.
Moving back to the ‘50s, I finally got into the late '50s and are off in the ‘60s when Jr. High struck, and so did braces on my teeth!
Nothing like stainless steel smiles to win friends! And the darn things hurt, as did the good-natured names like tin-grin or metal mouth.
They weren’t like the braces that I see today, these things were “full metal jackets” for my teeth, and they were wired with tiny rubber bands together to make my teeth move in the desired directions.
They must have cost my parents a lot, but when I look at pictures of me taken from the ‘50s—‘60s, they were one of the kindest things that they could have given me because believe me, I had a smile that only a mother/father could love! There used to be an advertisement for Kool-Aid and one of the flavors was called “goofy grape” and that’s what I looked like— a goof ball with some wildly bucked teeth with a tremendous over-bite!
It seemed like I wore them for years— in fact, I did. For 10 years I wore them because they had to be done twice because my first orthodontist didn’t do it right,-they were a major rehab!
After the second orthodontist got a hold of my teeth, many were pulled, and my jaw was realigned along with the “buck-ness” of my teeth. At least I could look more like I should have, but while I wore braces, I never smiled because I didn’t want to make them noticeable. When they finally came off, I think I spent a full week running my tongue over my front teeth because my teeth felt so smooth compared to the wiry mess that was my braces— no more booby traps of them hidden wires to spring up and poke into my lips and tongue! I think that my insides of my lips were tough as tire tread because of the constant running over the wires.
The only bad thing was when the braces were finally removed, nobody seemed to notice. I had to say “notice anything new?” And they’d hesitate for a while and finally say “your braces are gone!” Sheesh all that pain and embarrassment for this? Now I look at kids with their new braces, and just chuckle because they don’t look bad at all! If they used to have a goofy kind of a smile, their friends got used to it. Anyhow, I was 18 years old before I was free of having to wear braces on my teeth. I was off to UMass Amherst (the big one) where I met so many different kinds of people, I felt like a real hick! That was easy to be when you came from a Western Mass town and a Catholic school to boot; that’s where I toed the line -- you better believe it!

chapter three

here's another segment of my autobiography. I'm beginning to wonder my I'm so willing to part with stuff that has absolutely no meaning to anyone besides me?


The ‘70s weren’t all work, and they weren’t all connected with automobiles. I had a life that was much different before that. There was a time when I hung out around Stockbridge with my husband in the early ‘70s when I used to work there before we got married. My maid of honor was from Stockbridge, and she showed me many of the haunts that she used to now. Like the original place of “Alice’s Kitchen”— I was really surprised at how small of a place it was. I used to party out there and actually met Alice Bro; maybe it was the “Alice” of “Alice’s Kitchen”! She was not at all like what I thought she would be, but that always happens to our heroes!
As it turned out, my friend was a dynamite cook, and cooked with/for Alice at her latest place called “Alice at Avalock” which was near Stockbridge, but about eight miles away. She was also as big a “horse nut” as was I, so we had much in common. We both were in the fine arts program at UMass and we were both painting majors. A major difference was that after graduation she wised up and took a course in respiratory therapy. We rode out in the Stockbridge hills during hunting season (for what, I forgot) and somebody shot at me. The horse I was on got excited and bolted, throwing me onto the ground (I think I would have, too)—I think that self-preservation is prevalent in any thinking animal.
My friend blamed it on New Yorkers and said “you can’t trust those people with a gun”- it was probably new, and they couldn’t wait to shoot at something! You know, horses, cows, tall dogs any thing with four legs! I didn’t know of anyone I’d want to trust with a gun, but New Yorkers least of all. Sounds like regional prejudice? You bet! I used to work as a waitress on the summer vacation from college, and most of my patrons came from the New York area. Mostly because we were so close to Tanglewood and Jacobs Pillow which were frequented in the summer by New Yorkers.
These people were some of the worst types that I could have ever imagined! I mean, I thought you went out to eat to relax, and not act as difficult as you possibly could. I even wondered if these people had ever been “bitch slapped” by the other workers to make them act so ornery and totally wrong. This was a restaurant for crying out loud! Needless to say, I didn’t last long in that trade. Another thing that my friend in Stockbridge showed me was something called the Sedgwick pie. The “pie” was a configuration that tombstones were placed in a local cemetery-(sort of like the wedges of a pie), and were to be occupied only by Sedgwicks. Supposedly, it was said, that after death all the people that were buried there would stand up and face the judge who was buried right in the center (of course, he also was a Sedgwick). Afterwards, I became interested in reading a book that was entitled Edie, (after Edie Sedgwick) and it chronicled how she fit into Andy Warhol’s interesting group of sycophants in/and the rest of his life in Soho, New York.
Anyway, it seems as though my life was very interesting to me thirty years ago, but I’m glad I didn’t get caught up in something that I really couldn’t handle. I know that I didn’t do everything that I could have done about my education, but I think that in some ways I never stopped “pushing the envelope” and I’m glad that I hung tough!
I was thinking, as I was working on this page, that I never addressed my love for reading! I’m so glad that reading was stressed in a way that I was encouraged to learn how to do it, and to use my love of books to teach myself many other things that were connected.
I can remember as far back as three years old sitting on the living room chair wondering what home my father was chuckling about (all by himself) on a Sunday morning. As it turned out, he was laughing at the comics, and I was really curious as to what was happening in that colorful paper (the comics only came in color on Sundays) . As little girls and their daddies did everywhere, we shared a moment. I began to learn how to read while sitting on my daddy’s lap with the Sunday funnies! (we used to call the comics the funnies while I was in Cincinnati). I’ve been a comics reader ever since— not only because they can be funny, (I remember the comic by Walt Kelly-Pogo) but because they present a wealth of shortcuts for the aspiring artist. I have always had such trouble depicting hands until I started studying how the comic artist would do them for the “throw-away” art of the comic! One had to study the short-hand ways of showing an action which seemed to work so well in the comics.
Anyway, I digress— I learned to read well enough by the time I was in fourth grade to be able to read and speak intelligently about Hemingway’s The Old Man and the Sea— I only remember that because my best friend said to me “I thought this was only about a really big fish.”
Reading was one of the greatest gifts that my father ever insisted that I learn! I read voraciously throughout my school years , even under the covers at night with a flashlight!

chapter four

My bout with MS has been eye-opening, because I’ve had to become familiar with the various groups that support me like Easter Seals, and other groups that come in here to foster good relationships with our area schools. I

Alas, (how often one can say that word!) I can no longer read because my eyes suffer from dyslexia, a rapid eye movement that compromises my ability to track from left to right and then drop down only one line to the beginning (far left).
I haven’t seen anybody from my Stockbridge days, but I don’t think that I’ve seen much of anyone from more than ten years ago. My life in the ‘80s fell far below my expectations because I started to exhibit the signs of multiple sclerosis, which I had suspected but hoped that I was wrong. I was very fatigued in hot and humid weather, more so than before and I was a limp wet noodle. It was difficult to explain to anyone; I was happy to accept the fact that they thought that I was a bit crazy.
It wasn’t till after at least three trips to the hospital to set me going again, that I had to admit to myself that all was not ok. It was all so much easier to fall into a pattern of denial than it was to do something that was productive.
Living a life of denial was so much more comfortable than trying to keep up with the crowd in my daily life! I’m sure that I wasn’t fooling anyone, but I was too stubborn to notice that. I have run into a lot of challenges since then. I have been challenged to solve problems using a realm of talents that I have heretofore ignored.
What I mean is, designing a pattern for a T-shirt that incorporates our reason for being there (the Boston Marathon) and reports the date and number of marathons run up to that date. It seems like a pedestrian type of thing for people on the “outside”, but it seemed like a big production for me. Designing articles is a minor problem for me as long as I know what they are designed for and who they’re meant for.
My bout with MS has been eye-opening, because I have had to become familiar with the various support groups that are available out there. Groups like Easter Seals and others that come here in order to foster good relationships with our area schools. In fact, this morning we were visited by a group of sixth graders, who presented us with their poems. They were interesting because we learned a little bit about them (and us, too). They asked us questions about ourselves, and initiated a dialogue about a situation concerned all of us.
All in all, it was a delightful hour! But once again, I digress. The ‘80s should be known as the decade that never was, or never should have been for me, anyway because everything that could have gone wrong, did. I didn’t get to meet any people that were unforgettable in a positive sense or meet anyone of any unforgettable class at all!
Actually, I did meet a person that was in a class all by himself, and his name was Zora Duntov, the inventor of the Corvette. Now Zora was one of those guys in their ‘90s that was “sharp as a tack”— there wasn’t any moss growing on that guy! I think that he passed away in the late ‘80s, after I knew about him. I also met John Dinkel, the editor of/at car and driver, who also was a driver on the racing team that I worked for.
John wasn’t a bad driver because you could trust that he wouldn’t abuse the vehicle or get it an accident. Zora, was a great guy to bounce ideas off of and you could be pretty sure that he had already thought of it.
Maybe I I did run into some rather amazing people, but I seem to have forgotten them. I ran into the Hall of Hall and Oates “she’s a man-eater”. It was all through the racing team. A bigger reason was that I didn’t know it at the time.
Unfortunately, I would have enjoyed it more if I had the energy, but I didn’t. I’ve been asked how I can look at these things with such a pollana-esque attitude, but I don’t know any other way to look at it. All I know is that they happened, so now I have to deal with it.
It was really bizarre— I took care of the timing and scoring for the Team cars, and the care and feeding/lodging of everyone surrounded with them too. In addition to these responsibilities, I had to make sure that the cars and drivers and pit crew had the right sponsors advertising on their hats and T-shirts….phew! Sleep? You gotta be kidding! A really sobering thought occurred to me at 3 am— the race was only half over! We had started at 3 pm be previous afternoon.
Did I mention that this was a 24 hour racing team? 24 hour races are a group apart, because the preparation and strategy are special.
Special in what way? For one, you have to have a group of people that are committed to the same thing--the battle— because it really is a battle that requires a lot of planning if you want to win. And if you didn’t want to win, you wouldn’t be there wasting a lot of money and time, not to mention— sleep!
For instance, you don’t go out like the devil and drive like a maniac the first lap of the race just to look forbidding, and we really did, because we were described as juggernauts since we were so successful, but because you have to have a car that will perform at 100% for 24 hours. It won’t if you burn up your brakes and flatten your tires driving like Hell. And for what? Its hard on the crew because they have to scramble to accommodate your wild driving and it costs money to get new parts, not to mention time in the form of extra pit stops to try to alleviate the problems that a bad technique has caused.
Needless to say, hot-heads weren’t hired as drivers. The drivers had their strong points and weak points, for sure!
The owner of the Team was an excellent all-round driver, but was best at some of the middle portions, because he had a cool head and wouldn’t try to gain ground early on. He was also very good at the start because he wouldn’t take off like a Jack Rabbit and set a brutally quick pace that would stress engines and other parts, which would eventually end up costing him a lot of money. He was careful about how he expended his vehicles.
There were some guys that were phenomenal in the dark! You really have to have good eyesight to react at those speeds when you just have some high-power halogen high beams to light your way in pitch black!
One of these guys was Bobby Carradine —one of the Family of character actors that we see on TV. Anyway, he was a really good night driver— his lap times were almost the same as daylight. I always remember his brother in that TV Series “Kung Fu” because I used to watch it at home with my little brother— this was in the ‘60s. All was ok until he was practicing a karate kick at me while I was lying on the living room couch. He missed and clobbered me right in the head (and he used to have steel toes in his shoes for some orthopedic reason) and all he could say was oops. I know I shouldn’t have been playing couch potato, but I was tired and I certainly didn’t need to get a kick in the head to get me off the couch! I made sure that he paid and paid for that errant kick. Now it’s really starting to sound like name dropping, but I really did “rub elbows” with those people— I even raced against Paul Newman in his Lotus at Lime Rock Park in Connecticut--only in different classes. We jumped over a puddle at the same time in the pit— that guy has really skinny legs! His face looked the same as it did on TV, however. You tend to meet an odd mix of people at Sports Car races. From the rich and famous to nobodies like me!

chapter five

the words “nursing home” struck fear into my heart, because the only ones I’d ever been in were filled with a bunch of ancient people that smelled funny, not to mention the general odor of the place that they lived in-kind of like urine- blech!

This takes place in the ‘90s which is when I came to the Boston Home. You know about all there is, so I’ll probably be bouncing back and forth between decades because there are some things that I didn’t remember when I was treating that particular time.
For instance, in the ‘70s at UMass, I went to the Washington moratorium back in ’69 in a beat up VW beetle with a friend. The beetle managed to make it to Washington DC, but not before needing frequent carburetor repairs—it just wouldn’t stay running for long when we had to idle.
I went to the moratorium in the first place because it would fit into my work schedule better than a trip to Woodstock! I had to work! How many kids gave that as in an excuse for not attending the famous Woodstock Festival? (Not too many, I think).
I got used to not being cool when I was back at home for the summer— nothing cool going on like at school. Attending UMass was a real trip for me, because we had our own community where everything was a little warped in favor of “Viva the baby boomer” and we made the most of it. I got away with being a messy hippie type when I was around campus and a disheveled college type when I was around Amherst or Northampton. It was a freedom of expression that permeated the atmosphere around the “5-college” area.
The 5-college area was a popular expression in the Northampton/Amherst/Mt.Holyoke/Smith,etc. area. Mainly because it was so heavily populated by the students of those areas. I mean, we were the main product of exportation. ( I mean the consensus of our knowledge, opinion, and sports power) It was difficult when I reentered the “normal” world to find that I wasn’t “all it” and didn’t have a foot-up on the job market.
And that was why I ended up with such a non-traditional type of job. Looking back, I’m glad that it happened that way since I’d probably shy away from it. I’m not too brave about doing something that’s really outrageous, but at least I’ll consider it.
I’ve had to consider quite a few different things since I got MS. Relying on others to do some very basic personal maintenance jobs has been fairly difficult. Task such as brushing my hair and putting my jacket on--- I think that I’ll stop there!
I didn’t mention that I couldn’t use silverware much anymore, especially a spoon, without dumping the contents on my lap. I now try to eat hand-held things like sandwiches or hors-d’oerves. The only thing is, I don’t like sandwiches all that much. I did learn how to drive using hand controls and a lift gate to get my manual wheelchair into a GMC Van so I could continue going to work. I just wasn’t ready to relinquish my drivers license yet!
Looking back, it was just delaying the inevitable— I really had to face facts- the only wheels that I was going to have were the ones on my wheelchair, and I wasn’t going to work--I was heading straight into a nursing home.
The words “nursing home” struck fear into my heart, because the only ones I’d ever been in were filled with a bunch of ancient people that smelled funny, not to mention the general odor of the place that they lived in-kind of like urine- blech! I couldn’t stand visiting my grandmother for more than twenty minutes. Now I had to live in one!
Unfortunately, I didn’t check out The Boston Home before I came to live here. But I did see a place in Western Mass called the Western Mass Hospital, which was a good nursing home for MS patients. As it turned out, it was a converted hospital for the indigent population which had one floor devoted to MS patients. It had a bed for me but I turned it down— it was too depressing. I probably didn’t give it a fair appraisal, because I wasn’t ready to accept the fact I had the disease.
The one thing that hit me like a brick when I entered the Boston Home was that it didn’t smell! Not like antiseptic and not like urine! It also had a rehab area like a regular rehab hospital and a highly committed activities program.
I was able to do far more than I ever could at home, for instance I never would have learned to use the computer like I can do now with The Dragon Dictate! I did have a circa 1988 Compaq, which was by the time I used it a glorified door-stop. I originally had gotten the computer as a way of documenting times at the races. I had bought the Compaq on the assurances of the seller that it was a tough machine. And it was! It traveled hundreds of miles in the back of a semi, and tolerated rough handling without a problem and it seemed to be content with the meager voltage that it received from a generator.
When it wasn’t on the road, I used it as a word-processor, but much later than I should have because I was actually afraid of the machine. It wasn’t until I was assured by Mr. Bergen that I couldn’t break it that I felt somewhat in charge. I also was able to cross another bridge when I learned how to use Dragon Dictate. That program filled in a lot of gaps when it did my typing chores for me (I never knew how to type) and the actual physical problems that I had. The voice activation became almost necessary (I can do some on the keyboard, but very slowly).

Through it all, I’ve become more aware of my surroundings and more appreciative of the work that I require from others.





chapter six

I also don’t think that I ever really wanted something as badly or as completely as Zakim wanted equality, or something more noble— freedom of religion, racial equality freedom, and freedom to breathe clean, non-noise-polluted air.

Colleen writes about Freedom for Passover 2001

Dear Steve,
I enjoyed reading the article that you enclosed in the e-mail about Leonard Zakim. I never knew that he was as young as he was— I figured that with all the notoriety, he had to be much older than I…wrong! He just managed to
pack his waking hours fuller than I (not hard, considering what an easy mark I am!)
One thing that I did feel coming away, I never did anything, saw anything, went anywhere until I was in my ‘30s, and even then I didn’t do anything that was of great significance.
I never had a passport, because I never even left the country— and that is something that most kids do when they’re still in high school.
I don’t remember exactly how or why Zakim went to Israel, but I kind of think that it was something connected with his commitment to fighting racism.
I also don’t think that I ever really wanted anything as badly or as completely as Zakim wanted equality, or something more noble— freedom of religion, racial equality , and the right to have clean, non-noise-polluted air. Or maybe even the freedom to experience different styles of cooking! I know that in India, one cannot eat with the “unclean” hand (I think that it’s the left side)—with that I know that I’d be in deep trouble, since my left side is the only side that still works!
Freedom— that’s a difficult concept for me to think of, considering that I’ve never had to go without it. Maybe I’ll have to go through a time when my Freedom is curtailed— maybe I’ll have to go to jail or something, although I can’t think of a reason why I would be incarcerated. Maybe I’ve just finished publishing a flop of a reason why I value Freedom.
Maybe I just haven’t really thought literally enough about the value of freedom. To me, freedom means not being restrained in any way— my own definition of restraint is something that prevents me from participating in an activity for any reason at all.

chapter 7: from one of my friends, Michelle Hurley

My sisters found me in a catatonic state. They made an emergency call to my Doctor who initiated emergency care before I was transported ambulatory to the hospital in Boston.


My name is Michelle Hurley. I am 29 years old, and I'd like to tell you my story about lupus. The story begins when I was 25 years old. I hadn't been feeling like myself for about 6 months. The symptoms I had made me feel like I had arthritis. I went to a local emergency room. They couldn't find anything wrong with me at the hospital, so they sent me home. I continued to feel lousy so I went to see a Doctor at the clinic where my sister worked. He saw me and suggested that I had Lupus. He referred me to a specialist. Between the time I saw that Doctor and got to the specialist, I developed a rash. From what I remember, when I saw the specialist she said, "Yep, it's Lupus". I had a lot of blood work done and was put on prednisone.
Not too long after this, I developed a high fever and went back to see the specialist. Because the fever was so high, the Doctor thought I should stay in the hospital. I was checked into the hospital and stayed there for 2 days. I guess I wasn't doing that great. My sister didn't want me in that hospital so she tried to get me transferred to a hospital in Boston. I don't really know what happened, but I guess my sister Mia tried to get a Doctor who was an expert in Lupus. She finally got in touch with one and he agreed to see me and okayed the transfer. I don't remember the actual transfer from one hospital to another. I asked one of my sisters, she told me what happened.
On the morning of my transfer, my sisters found me in a catatonic state. They made an emergency call to my Doctor who initiated emergency care before I was transported ambulatory to the hospital in Boston. When I arrived there, I was in the emergency room for eight hours before being admitted to the floor. That next day I had a stroke. The next morning I had another stroke which led to a coma. I was in the intensive care unit for a while. I was in a coma for 7 weeks.
The stroke was called a bilateral stroke( Medically Speaking, the Strokes Involved the Basal Ganglia and Thalamic and Internal Capsules with Involvement of the Right Caudate Nucleus) Which has left me partially paralyzed. I stayed at the Acute Care Hospital for 4 Months, then was transferred to the Rehabilitation Facility (4/ 22/ 88), where I am still a patient.
All of this happened rather quickly. I found out that I had Lupus at the beginning of December 1987 and I had the strokes that the end of the same month. At the age of 25, I was a typical, normal girl, until all of this happened. I was working, going to the beach, had my own apartment--everything was great, at least I thought so anyway. Until I found out I had Lupus. I knew a little about it ( Lupus) or thought so anyway. The main thing was no more sun. I wasn’t the least bit nervous when the doctor suggested that it might be Lupus. Little did I know that I would be sitting in a wheelchair telling my story.
When I Arrived at the Rehabilitation Hospital I'll admit I was a little bit nervous, but not that much. My strokes affected the part of my brain which decides whether or not I’ll laugh or cry. Well I cried and cried for what I guess was a good four months, which was lousy because it affected my therapy. I would cry for no apparent reason, which I’m sure frustrated the therapists, as it did me. Today I feel as though I have it under control most of the time.
The strokes not only affected my crying, but they also left me paralyzed. I mentioned before that I am partially paralyzed. But when I came to this rehabilitation center I couldn't move at all. Thanks to the therapists and a lot of my own hard work, I can move today. The left side of my body was more affected by the strokes than the right side. Most of the return movement that I have is on the right side. I can't move my left side on my own at all. I must say that a lot of the movement that is back in my hand is because of a surgeon. When I first met him my arms were in the fetal position with the elbows bent and my hands clenched up tight against my chest. Thanks to him I'm able to move my right hand without any problem. The last three fingers on my right hand are a little difficult to move (they don't bend at the first knuckle), but I can use my hand to do almost anything. My left hand was done also, but for hygiene purposes, not for function (movement) which is alright for now. I'm learning to live with it and I must say that is the hardest thing to do. The same doctor that operated on my hand is going to do the same thing with my left foot which means my foot will be straight instead of being curled down (which is called foot drop).
The strokes also affected my speech. I have a profound dysarthria. This means that I have problems coordinating my breathing, turning my voice on and off, and pronouncing my words. The muscles involved in talking are very weak. The only time I can turn my voice on is when I laugh or cry. This dysarthria means I can't talk, it does not mean that I cannot communicate. I owe a lot to my speech therapist who showed me that there are other ways to express how I am feeling or to tell people what I want.
Looking back, I'd have to say I've made considerable progress. At first I was using a letter board which was on an easel because of the contractures in my right hand. The way my hand was before my operation, I wasn't able to point to any of the letters properly. Then I went to a regular alphabet board, placed flat on my lap tray, which was ok but very limited because of what you could say. The person I was talking to had to stand right next to you and say the letters out loud so I could be sure they were getting the correct message. It was also a very slow means of communication. Next I used a Sears Computmate, it is like a small typewriter with a screen across the top, it holds about 30 letters. The screen is small--it is only five inches long and 1 inch high. Because of this, anyone that I was talking to had to be standing right next to me. The only difference from the letter board was that the person standing next to me did not have to read the letters out loud because they were displayed on a screen. Another disadvantage was that there wasn't a voice output. This was very important to someone who can't talk or yell out because I wasn't able to yell to the nurse when I needed something or if I was suddenly feeling sick. The next thing I tried was a word processor. I really liked it because the screen was much bigger and if I wanted to tell someone something they didn't have to be right beside me. It had a memory and I could save messages to give to people when I saw them during the day.
What I would really like is a system with a voice. The frustrating part is that I have tried a couple of voice output systems and was able to operate them all. My speech/pathologist and I have decided which system would be the best for me. However, getting the system funded is turning out to be a major problem. The main reason I would like to have a voice output system is because it is so frustrating not being able to yell out "Hey" or something like that when you want something. I definitely don't want to live in this rehab hospital all of my life. If I had a voice output system, I could possibly direct personal care attendants and live in a handicapped accessible apartment. I could talk to my nieces and nephews who aren't old enough to read, or I could make phone calls to set up my own appointments with doctors and other people I need to talk to,besides the fact that it would nice to talk to old friends again. Yes, it sure would be nice to talk to old friends again.

chapter 8: from one of my friends, Diane Lemay

My Aunt Laura Lemay told me not only as a young child but as an adult she said "always remember God is with you where ever you go."


How do they fight a “Mysterious Symptom” known
as Multiple Sclerosis:

When my son was 8 years old, I had to place him in foster care because I needed to be hospitalized to find out what was happening to me. In the meantime, my son was going through anxiety and despair for he did not have any choice at that time to speak for himself. Upon finding out the diagnosis from Mass. General Hospital, I had to enter an adult foster care program till they could find me an appropriate housing unit for the disabled and elderly.
My son and I did keep in contact with each other but he still did not feel secure enough to talk with me about my impairment. Once I returned to Fall River, I found my old grammar school was set up as handicap accessible so I applied for an apartment and was approved. My son paid me visits as often as he could. While he was in foster care and going to Durfee High School, he became a disc--jockey at the local radio station which covered High School sports. It was called Teen Talk. Since then, he has gone on to a different field of endeavors such as "graphic design for web site, and working for the local T. V. Station where he lives. He also works from his home doing different jobs. I am very proud to call him my son-- his name is Marc Lemay. He has found that living without his mother he had to reach down deep inside and find his strength to carry on without me by his side I believe that God gave him the courage and strength to move forward in life.
Just as my Aunt Laura Lemay told me not only as a young child but as an adult she said "always remember God is with you where ever you go." She had a way of giving me courage to believe in my self and also that I had a great mind and someday it would help take me to places I have never been before either in body or spirit. What I believe she was saying, is to never forget who we are but put our best foot forward no matter what the outcome may bring. Since, I' I've come to the Boston Home I have found new experiences and adventures thanks to the faculty, residents, and the volunteers who have donated the computers so I and all the residents may enjoy searching Internet and communicating with their families via e-mail. My aunt has told me that since my being here I have now a chance of pursuing a new wave of short stories on the computer.
Just think if I were still in Fall River, I would probably have bed sores all over my bottom and my P. C. A., would still be mistreating me in a fashion that no one would care to imagine. I thank the Social worker Lucille for encouraging me to go into the courtroom and face that Assistant who did not care for me properly. I was under the protective service of the Assistant District Attorney Office for abused persons. My son never knew this, but he will now know and I hope he understands why I kept this from him all this time. Not even my brother never knew I had this much fortitude and stamina. Again, I wish to thank the nursing staff for being there for me when I needed them. My son Marc is not only an excellent and sufficient young man but he is a superb husband and a terrific Dad.

chapter 9: from one of my friends, Janice Kusher

I’ve also had the opportunity (being at the Boston Home) to gain a lot of knowledge on and about computers.


Hi, it’s Janice Kusher.
I was diagnosed with Multiple Sclerosis 28 years ago. My deterioration started to occur in 1984. The way i dealt with my disease is getting involved with disability issues, it has educated me on how to preserve a life with and beyond MS. MS has also given me the opportunity to have more patience and a better acceptance of the style of life my children have preserved.
For lack of any other word, I’ve also had the opportunity (being at the Boston Home) to gain a lot of knowledge on and about computers. I probably spend approximately 80% of my time in the computer lab. Being here is like living in a very small community where everybody, due to the illness, shares something in common.

chapter 10: from one of my friends, Richard Kaplan

I’ve also had the opportunity (being at the Boston Home) to gain a lot of knowledge on and about computers.


Dear Senam,
With some help with your project, i have had MS for 20 years. I have had many symptoms such as double vision, loss of sensation in my hands and toes and partial paralysis of one side of my body. This has led me to many visits to the hospital, rehab clinics, and psych wards. It has taken me a long time to come to grips in both dealing with and accepting this Multiple Sclerosis. I have been at the Boston Home for 7 years and it helps to be with people who are in the same circumstances as me and are getting the proper treatment. It also helps that we get to talk to people like you.
-RICHARD KAPLAN

chapter 11: from one of my friends, Don Olivier

You can't teach an old dog new tricks, but there are some tricks
only an old dog can do.

I've needed an excuse for writing this down or a long time. Hope it suits your purpose:

SPILT MILK

I've spent 30-odd years living with a disability, but most of what I've learned boils down to a few short maxims. As I write them down I realize they apply to most of us: chronic disease puts the issues in sharper focus, but everyone who doesn't die suddenly at an early age experiences disability of one sort or another sooner or later. It goes with being alive.

First of all, don't worry about "why," Orson Welles said.
Nobody gets justice. People get good luck, and bad luck.
No doubt you've had some some of both. You'll get more.
Don't brood about how things used to be, or could have been; it's no fun and it's bad for the health.
There aren't many unmixed blessings,
after all. When I miss driving, I think about parking, rush hour, and
snow.
Perhaps you've lost some quality or skill you thought defined your worth
(attractive young women and athletic men have the hardest time). Don't despair-- there are always alternatives.
Put the past behind you, start
from where you are right now, and work from there;
Learn to itch where you can scratch.
When some familiar activity becomes impossible, or so difficult it's no longer worth the effort, don't break your heart with futile struggling.
Be flexible, pick your battles, remember that:
He who fights and runs away
Lives to fight another day.
And don't dwell on what's gone, pay attention to the positive things that are left. They're there:
You can't teach an old dog new tricks, but there are some tricks
only an old dog can do.
-Don Olivier


chapter 11: from the editor, Senam Kumahia

That’s the day my life changed for the worse.

Eight months. I can’t believe that its been eight long months already. October 21,200. That’s the day that my life changed for the worse. It was a high school football game versus St. Marks School, a school with a dismal record. Not too much effort was required to beat them handily. We were winning in the fourth quarter, 14-0. There was no need to do what I was going to do. But I wanted to be a hero, and save the day that did not need saving.
I play defensive end. My responsibility is to contain anyone who tries to run around the corner. It was a sweep right, and it seemed like I was the only one able to anticipate where the play was going. So, I got to the ball first. I was met by a St. Marks offensive lineman. He attempted to block me, but I avoided him. I went around him and reached for the ball carrier. This was all happening in the backfield, so the play would have been a 10 yard loss. I rushed a little too far up field, so I had to compensate. I reached for the running back with my left arm and grabbed his jersey. Ordinarily, I would have the strength to bring a running back down with one arm. Not today. As I got a hold of his jersey, he continued to run with reckless abandon, and my arm went with him. With each step he took, my arm stretched further and further, until it reached its breaking point. My arm separated itself from my body, leaving my shoulder in a slump. I can still remember the loud pop and feel the ball of my shoulder leaving the socket. Its funny, it didn't hurt that badly. Little did I know, I had just torn several ligaments and crushed the bone in my shoulder. I tried to continue playing, but was unable to. I took a two week hiatus from practice and games, trying to give my shoulder some time to recuperate. After those two weeks, I returned, ready to play the dragons of St. Georges. Fired up and ready to play, I felt like I had something to prove. Before every game, there is a warm up where we all prepare for the athletic contest. There are different drills that make up the warm up. I went through the first two drills easily. The third one was a charm. The third drill, my shoulder died on me. I made slight contact with one of my teammates, and the shoulder dislocated. The ligaments had not come anywhere near healing and I should not have been out on the field. This time, the pain was excruciating and unbearable. I have never felt pain like that before. It felt as though someone had taken a baseball bat to my shoulder, and gave me a thorough beating with it. I fell to the ground, screaming and holding the left side of my body. Everyone simply looked at me, not offering any help whatsoever. They just sat there, looking at me, a group of dumbfounded idiots. I would not be able to play that game, or any games for the rest of the season. I missed all of basketball season, and all of lacrosse season. Eight months.
This injury has been especially difficult to deal with because I was such an active kid. I was a three sport varsity athlete, and athletics were what I was best at. I didn’t know how to do anything else. Sports were life. And all of a sudden they were ripped away from me. It was like someone cutting of your air supply, choking you until you pass away. I passed away a long time ago. This injury has affected all facets of my life. I have struggled to maintain healthy relationships. I have become incredibly short tempered. I do not enjoy participating in some of the same activities that I used to. Life just hasn’t been the same. I feel like I am on an island where no one understands my pain or how I feel. It’s so easy for people to say, “Suck it up” or “You’ll be fine soon enough.” None of these people know what it feels like to have something so near and dear to their heart taken away from them. I may not be able to play a sport at the collegiate level because of this injury. If I can’t use athletics as a supplement to my admission to my college of choice, that means I wont be able to attend. This is a life altering injury. Maybe I’m just making a big deal out of nothing, maybe I’m depressed. All I know is that it
‘s been eight months. Eight months.