grace

I love kids.  Because of this, I won't ever have any. There are several reasons for this, but the central one is the fact that I have a traumatic brain injury. Much of my mechanics have been harshly affected and so has my memory, awareness, comprehension, judgement, and several other issues which are essential to be responsible enough to be a sound parent. Additionally, I have no mate and in my condition, that would be essential. Since many other issues are at hand, being childless is hardly a big concern. Not only do my sister and sisters-in-law do a masterful job of motherhood and have provided me with several occasions with which to fulfill any maternal insticts which arise. I am happy to watch in awe at the masterful job which they do and am never jealous of the patience and committment it takes to mother. Plus, uite aware that the world is failing in large part to a lack of resources to the population it already contains.  Combined with a more personal reason, I am honestly fine with being childless.  Although I am forty years old, have two college degrees and live in a state which pretty much equates maturity with motherhood, not even having the notion of wanting to adopt, sets me apart.  As I have a severe disability, providing for all of my needs is impossible and the very thought of fully caring for another human is humorous.

Being a single, forty year-old with a cat is a bad cliche, but for the present, it is what it is. Some people dress up their pets and seemingly substitute them for children. As my pet is definitely non-human and I did not buy her for that purpose, this scen
With only a few exeptions, cats are self-sufficient and once my neighboring family relocated to other regions of the country, I felt the need to have a permanent conpanion. That's usually the reason I give for her presence but actually, I have little memory of having this sense. I think I just heard an announcement which asked for support of the local animal shelter. Despite all of the effects of my disability, I knew that I could care for a cat. Hence, one afternoon, my mother and I drove down and saw the great number of options. As the town where I live is less than two hundred thousand, the display of cats at other humane agencies must be staggering. Of course that saddens me and if Grace were ever friendly to another feline, I would surely welcome more critters.  However, she definitely is not, so "until death do (the two of) us part." That's okay...actually, it sort of cute.

Knowing that every agency neuters and spays each and spays let me adopt her from the local shelter with a calm mindset.  Cats reproduce quickly and just chasing and corralling one kitty is difficult with my disability. Doing that in duplicate would be impossible. I have a brain injuty which has made many of my functions slow and has severely limited ambulation. Hence, even if she was "welcoming" (which makes me giggle), owning even two kitties may be impossible. As far as choosing her went; Mom was with me when adopting and she is partial to any species that has given birth, a small, grey, pretty female who was grey and had previously carried a litterand, knowing that the name would be easy for my two year-old nephew, Peyton to say and being well-aware that I needed a permanent supply of it, I called her "Grace."

Despite the fact that this piece is a tribute to her, the negative aspects to owning Grace must never be ignored. Besides she is voracious, her attention seems to perpetually be on her next meal and food. When returning to my plce after the first weekend she lived in my home, she pooped on the carpet six times.  As I was away all weekend and I have been told that, because of nerves, this issue is common, I failed to be alarmed or offended.  Additionally, she has regurgitated clumps of grass in my bedroom many times when I let her outside. Chomping is also a problem in other ways; Grace continually bites through and ruins my phone, computer, printer, recharging, laptop, and a great many of other electrical chords. Since I am frequently away, I have needed to mentally construct a list of about five people to feed and water her. As she often accompanies me on visits to their home, my parents cannot own cats because she will hiss at and we are afraid, attack them. If I sleep past nine a.m., Grace attacks me in bed and gnaws at my face to warn me that she is hungry.  About once a month, she catches a glimpse of a kitty from the neighborhood through my sliding glass window. On these occassions, she makes this loud moaning hiss that will haunt me until I die. My entire family is on alert of her location and issues in their various locations around the country.

All of this being said, she is gentle and mellow and is adored by all who know her. When fearful conditions rise, my thoughts imediately go to her safety and shifting the focus from my plight is ALWAYS a pleasure.  She also serves an irreplaceable role in my life and I can only hope that my mood were as even and composed. I try to emulate her straightforward, unapologetic yet loving spirit. As I have lots of small nieces and nephews, before their initial meeting, I am always nervous to see her reaction to their inquisitive, somewhat harming ways. However, she is always a champ and never reacts badly. Having her is also a constant reminder of my good fortune.

A friend, Melanie, is an excellent physical therapist who has the compassion to provide home visits for many of her clients.  As the majority of those under her care are physically disabled, it is an ordeal to keep appointments at her clinic. As a person with a disability, I am well-acquainted with the large number of issues one can encounter when one needs in just waking on time, feeding oneself a nutritional meal, and getting next door.  Setting and keeping an appointment for a session with some therapist often seems fairly ridiculous and if that therapist's job focuses on an issue in your life which are problematic? Yeah...huge success rate when it comes to getting clients who have a positive attitude.  Melanie and I grew up near each other and competed in a few athletic endeavor. Although she was much more talented and motivated than I, she never ridiculed me and once I relocated to the town where she had found employment and was completing her dissertation, I got in touch with her about one of my disability-related issues and we became reacquainted.

Although a true-relationship/frendship never resulted, Melanie introduced me to one of her clients, Mavis. It is sadly common for parents to institutionalize their children with disabilities and because my family is so supportive in every way, this issue is so abhorrent to me, personally.  From a distance, others may also be aghast at giving-up personal contact with a child, but, if compassionate, may be understanding of the descion, especially when considering the other children, time, and other issues that might be in play. As I only know of an overwhelming, altrustic, true love from my parents at every stage of life and cannot imagine a moment of going without, Melanie's fate is horrifying.  Every single moment on my journey, I have felt the invisible hand of my parents...to push me to take risks, to help pack and transport supplies (even across Nebraska during the winter), to bathe me when I broke my thighbone, to escort me across my graduation stage, to wring with worry over my safety when I took countless, to complete countless forms and applications when my own writing was illegible, journeys,  

pilates

About twenty years ago, I was in a car-accident that put me in a coma for one month and injured my brain so badly that many of the neurons necessary for walking without assistance (including balance) have been destroyed. After years of physical therapy, tai-chi, and many types of yoga, I tried to accept my fate as being an individual who would never enjoy the feelings of comradery, accomplishment, optimal health and serenity which an a complete workout brings. Poses, positions, and postures could be modified, instructors were usually patient and tried to be helpful. However, I rarely left class soaked in sweat and work on my core was fairly non-existent. Then, I tried pilates at Hot House Yoga. I wish pilates were offered on Sundays.

medical

As I happen to have one, combined with the fact that I am well-acquainted with many others who have the same injury and further compounded by all of the information and observations which came from my graduate program of rehabilitation counseling, I feel completely free to make a few honest, medically-based observations on the lives and customs of people with traumatic brain injuries. Please notice that I did not stop after the term "medical." As I have never studied medicine, the facts upon which I rely are not documented and untested. However, "it is what it is" and I perceive it to be wise that people believe me. Many people give the medical community exclusive authority to advise on neurological disabilities like mine, but, in twenty years with this, I have found that even (or often, "since") studying the facts for YEARS, many medical professional have and exhibit inadequate protocal, when it comes treating my people...persons with traumatic brain injuries.

Honestly, most people do their best and we definitely have a tendency to wear on peoples' nerves, but my disability has done lots to change my perceptions and judgements, including my awareness on loss and human decency. To begin with, most are fairly unaware of the basic definition of a traumatic brain injury.





First of all, I do not want to persecute anyone...especially caretakers. As a forty year-old adult, I am mindful of all of my constitutional rights and am well-aware of anyone's attempt to inhibit those or take them away. I have never been institutionalized nor has anyone (except my parents) reigned over me or controlled my life, but I have seen this happen to folks like me on numerous occassions. Sometimes, authority is necessary as we have brain injuries. These

grateful

Recently, I was told to cease saying "thank you" so much. As the constant repitition is understandably boring and I do not want to minimize the phrase, I've tried to desist. I've tried. However, a brief look into my LIFE and reality should explain this constant repetition.

boys

I used to be a groupie. Well, this isn't exactly true, but I like to say it. Groupies tend to have the reputations of sleeping with band members, doing lots of drugs, and partying 'til the wee hours of the morning. As this image that this statement presents is pretty sad, irresponsible, and juvenile, my father would hate to hear me make it. "You have your masters degree. You only knew these guys for a few summers." He'd be correct on most of these accounts. Still, I take a huge amount of satisfaction in stating that I was once a rock n' roll groupie. Have you ever just been with a band? They're pretty much awake for most of the night, they usually know and play very good music, rarely judge the actions or lifestyles of others, are unusually honest, don't seem to need much to be happy, and take things at face value. Their hygiene is rather frightening, but they seem to be open to suggestions!

The "band-members" were, at the time, pretty much novices. They played at a few amateur nights and I highly doubt that they came out of the summer with any contracts, record-deals, or money, but I will always claim that my summer with them was highly successful...even if I was the lone individual to profit. As it was the first true summer which I experienced after the occurrence of my disability, one would question the previous statement, but I'd just chuckle in response. Firstly, every person attending this camp was disabled. Usually, participants had spinal chord injuries and, thus, were paralyzed. Being brain injured, I was one of the few exceptions and will always love the camp for several reasons, most importantly, because I was finally introduced to about twenty others like me, who required wheelchairs and other equipment and means of support to help us live. I am from a sparcely populated and rural state, I was not privvy to communicating with or hanging-out with anyone else who had faced a lifestyle-change in the same respect as I had. Secondly, there were about thirty other individuals at this place in Rhode Island (Shake-a-Leg). As there is definitely strength in numbers, it felt positively jubilant to find a community.

The guys to who I am pertaining were not residents, but "counselors" and assistants who earned paychecks from the management at Shake. Two of the three were amateur musicians from Gainesville, Georgia named John and Tim and the third was John's younger brother, Dave (the drummer...of course). Besides being nearly my age (twenty-two at the time), I thought they sounded good and each night they practiced, I heard countless stories about their outside lives and experiences. Touring with a band had never been something which sounded alluring to me but, to this day, I have humorous, completely unrealistic dreams of it as being a viable option to having a sane life filled with responsibilities. The realistic details of being on tour sound fairly horrendous and the image of being stuck in a van with a bunch of unwashed vampires does not sound appeal, but a LIFE with these or similar fellas sounded...really cool. Dave, John and Tim were my "boys".

As my parents had three male children after me, my first boys were, naturally, my brothers. All together, Mom gave birth to five children, the baby being a girl. In this day and age, having, caring for, and feeding five kids sounds completely daunting, bordering on insane. However, the trick is to let them teach and entertain each other. If it hadn't have been for the advent of the ball, Mom would probably still be feeling the side-effects of valium. My father is not a tennis pro. He was never on the team in high school and he went to college in southern Texas, where, I assume, competition is fierce. Still, after relocating to a small town in Eastern Iowa, quite strangely, he found that comparatively, he was very good and taught his children to pursue the game. Immediately, my folks found that a key to having a life which wasn't entirely consumed with children (and their subsequent issues) was linking them with a ball...turning them to organized sports.

So began a journey which continues to follow (or bombard) me. About ten years ago, one of my brothers' ex-girlfriends casually asked if I have ever been to a major league game. "Yeah," I responded, "when we were little, my Grandpa lived in Chicago and would fly us in every summer. He took us to a Cubs' game once." Jaffa (said brother) got animated at the memory and excitedly asked, "First Cubs game: Where'd we sit?...How many innings?...Who pitched?...Who'd they play?...What was the score?"
Of course, he knew all of the answers. I just remembered going to Wrigley Field once.

Sadly, my parents

After a few years after receiving my undergraduate degree, I registered at graduate school at the University of Illinois. After my first year, I relocated into a giant apartment complex, quickly discovering that I had accidentally become neighbors with the school's basketball team. More boys. Honestly, I my relationship with this set was completely casual and I pretty much ignored them..never going to a game or watching them practice.
At this time in my life, I am enrolled for class in a studio called Hot House Yoga. As my disability has deleted much of my balance, getting into and holding many of of the usual yogic positions and holding many of of the positions is an impossibility. Thus, on an almost daily basis, I take an hour-long class of pilates, as it primarily takes place on the floor. Occasionally though, I have the time adequate to participate in yoga and pilates. Both types of exercise are GOOD and each takes place in an over-heated room with experienced instructors who don't seem to mind that I often reform certain movements into ones which procedures which I am able to hold and maintain. After time, I discovered that many of the guys in my yoga class were members of the University of Iowa football team and since my brother makes his living competing in the same sport, we have things to discuss and often swap stories about various players. At this time, I live in a state which cannot financially support professional sports. Thus, much attention is paid to university athletics and those involved and a few friends and I got-together and watched a few football games last fall. Thus, I am a bit aware of the names some of the players (okay...only one) and have a bit of interest in their lives.

As I began this document by stating that I have three brothers, I really owe my readers a better description of them. Hopefully, painting a clearer picture of "the boys" will more clearly demonstrate the importance they have in my life. Jaffa, my oldest brother, is thirty-seven, lives in Denver, is an amazingly thoughtful father and husband, and is, basically, the

In addition to these groups of boys in my life, my three younger brothers have a truly awesome amount of friends. While growing up, the toilet seat was rarely down and the phrase, "Boys! No balls in the house!" will always stand out in my memory.Tennis, basketball, football and golf were favorite endeavors in our household. Sadly enough, if I close my eyes, what immediately pops-up is the image of the oldest of my brothers working on his form and I learned early on that their agendas are unfathomably diverse from anything which I can understand.

However, my disability gave me an appreciation for those who were born with a Y chromosome. Often, at this time in my life, bad public situation don't need a level of deep understanding, lots of questions, or a level of much understanding. Resolutions have a much more urgent sense when a disability like mine joins the party. Higher understanding and a sense of tolerance are nice thoughts, but if there was a fire, explaining the exact reason to take a certain course of action versus an alternative plan becomes obtuse bordering on stupid, but I've found that women have deep questions and this fact may give much more skill in other areas and is something in which I take lots of pride.

Something in which I will always take tons of pride is the fact that I have my bachelors degree from Wellesley College...a womens' college. The scenery of its campus is legendary with all of its stunning beauty and charm. More importantly, the level of academics is beyond excellent. Each of my teachers at Wellesley achieved their doctorate and many of my classmates at that college spent most of their high school careers striving to be accepted. Achieving a degree from that institution left little doubt in my mind that a masters degree was achievable and with that completed, my ego has a small chance of being slighted. When one finds difficulty in walking, talking, or doing the smallest task, nothing can beat having a healthy ego...nothing.



Conversely, possessing three brothers

rolyword

Sadly, most persons with disabilities are separated from the mainstream. Pain, behaviors, physical disfigurements, cognitive lapses, and the necessity of assistive equipment are all possible consequences of disabilities are usually present. Additionally, a general sense of disgust, fear, and ignorance force us to live lives in exclusion. Most often, we live in residential facilities where little happens of which to speak. Additionally, as 80% of us live in poverty, there is additional sense of separation and it is difficult to feel as if we "belong." As I am one of the 62 million Americans with a disability, I understand the emotions that stem from my unique condition and only sometimes feel that welcome or comfortable.

Comfort often leads to conversation and there is never a lack of matters I could discuss; I attended a prestigious college, got my masters degree, have siblings on both coasts (and states in between) who have travel frequently and have busy, interesting lives. Also, I have a brother who has been a quarterback in the NFL for ten years and this tends to intrique 95% of those who I meet. Most importantly, I have a disability which tends to be at the center of some sad and ludicrous incidents. Hence, one would think that I had many stories to tell and liked to talk. Basically, that ended at about eleven a.m. on March 22, 1992.

A junior at Wellesley College in Massachusetts, I was on an exchange with the University of Iowa for spring break. Driving to town one morning, I slid on some black ice, lost control of my car on a bridge, and was in a coma for a month. It was tragic and has resulted in an entirely new perspective and lifestyle. As I understand how my obviously different appearance elicits questions, I am usually comfortable, calm, and patient when responding, but that does not mean that I will ever enjoy educating others on what is my greatest source of pain. No one asks me questions at Rolyworld.

As most of those in attendance are friends of my family, chances are that they know the basic issues. Others are usually distracted by stories, updates, food preparation, or one of the many activities which consistently take place to pry or even to innocently ask. Since my wreck happened almost twenty years ago and has made me patient but bored with being beleagured, this silence is quite necessary, cherished and adds to my enjoyment of this place which has been given the name Rolyworld.

Since it is divided by a stream filled with fish, Rolyworld may have been purchased for easy access for this endeavor in 1986 and is located off of a gravel road that runs between the towns of Bellevue and LaMotte. The land is about nine miles from the Mississippi River. Named in tribute to its owners, Steve and Peggy Roling, Rolyworld has become something of a legendary plot of land, as they have graciously welcomed hundred of souls to share in the beauty, fun, and community that Roly has to offer. Immediately following purchase, Steve created four or five ponds that run in succession along the north side of the property, where most of the activities take place. Steve acquired two diving boards and a slide when the local municipal pool bought new ones. His granchildren and many neighboring youngsters are driven out to escape the heat. Truckloads of sand were brought in to create a beach for these guys and several fields have been cleared and flattened to play an assortment of sports.

Several years have passed since inception and the main location to congregate has changed. In the beginning, folks just camped along the creek that runs beside the property in tents or campers. Eventually, a cabin was built which houses many of the winter get-togethers. Currently, the main hangout is an area which lies between the principal pond and the cold waters of the stream...mindful of the the children and for the peace of mind of their parents. Steve is a logger, at one time, he would bring tree tops in and pile them high with his logging truck. When weekend nights came and many people were present, he would light a massive bonfire which would burn for hours. People sat around, talked, and imbibed in a few spirits. As a conscientious logger, Steve has planted several hardwood trees and these provide shade and help Roly to have the atmosphere of being at a resort. As we live in an area where money is scarce and few can afford to take time off and fly the family to the Bahamas, a weekend at Roly provides a easy remedy.

As it is a focus of visitors at Roly, the topic food needs further emphasis. My mother is one of the leading cooks in terms of both quality and quantity so I feel a complete sense of comfort and gratitude when it comes to giving it righteous applause and eating as much of whatever I am served. Remember all of the regulars are Midwesterners and to suggest that we focus on or have a penchant for tasty cuisine is something of an understatement. Nearly all of the women and several of the men are fantastic chefs; most of whom have their own gardens. Roly lies on fertile land , so the vegetables which are prepared and brought are grown a few yard from the makeshift kitchen. Additionally, there are always amazing meat dishes…most of them cooked in a Green Egg, a ceramic smoker where ribs, crown meats, chicken, tenderloin, hot dogs, burgers, and brats. As a vegetarian, I need to attest to the fact that the cooks face this hurdle with ease and humor. As a vegetarian, I will attest to the fact that while most of the main casseroles and trays contain meat, enough meatless offerings are available to mark this as an event attended by a conscious-crowd, aware that their individual needs may not be everyone’s standards. No one should ever leave Rolyworld hungry.

Steve’s intentions for creating Rolyworld are debatable. Was he just trying to make a buck and gather trees or was he simply trying to create an acre of outdoor-relaxation for his friends? According to Steve, the first thought is true, so then the coincidence that most of the Roling’ friends are mainly free-spirits with good intentions and senses of responsibility for the land is perfect. As we live in a state where money is rather scarce and the little that people have is rarely spent on amusement…especially on destinations for entertainment, the actual construction for this land leaves a few questions. As a day at Rolyworld provides a complete escape (most cell phones and radios don’t even get service!) similar to a tropical island, this land is quite cherished and not everyone is granted admission. I have witnessed the exclusionary-process on a few occasions and felt proud of my parents and their friends for wanting to uphold a measure of peace and decorum. As Peg, Steve, and their friends are somewhat loose, happy, and friendly, apparently some folks were under the impression that peace and civility were absent. Steve’s wife, Peggy, helps him to be fairly certain of the names, destinations, and possible-impairments of visitors. At present, I am unaware that a single tragedy has taken place at Rolyworld and as it has been the sight for occasions such as family reunions and weddings, I feel fairly confident in the peace and tranquility found there.

These types of formal festivities are rare and often each weekend results in at least one large informal gathering and for these events, most families bring a large dish or dishes to pass-around. However diverse the sites of origination, most guests to Rolyworld come from the neighboring countryside and small town. As this is Iowa, most people and customs are traditional and are fairly close-minded. However, as stated, my parents and their friends have adopted fairness and an anti-establishment-sense. As my mother and a few other guests used to be lay-midwives, they helped the other mothers give birth at home. Thus, most of the children can point to my mother as being a fundamental witness to their arrival into our world. As her child, it is hard to describe the intense and constant positive feelings that gives me.

As Rolyworld is located in a rural state and lies between some small towns, the guests are primarily residents of those towns, although the usual visitors like to show-off their small, fun-filled, “utopia” to guests. Plus, although people often move away, they usually pay Rolyworld a visit when back. Thus, Roly has hosted guests from Africa, the Pacific Islands and many states in the nation. It is not uncommon to hear different languages or to see an unusual array of talents on display. However diverse the sites of origination, most guests to Rolyworld come from the neighboring countryside and small town. As this is Iowa, most people and customs are traditional and are fairly close-minded. However, as stated, my parents and their friends have adopted fairness and an anti-establishment-sense. In the world of Roly, I automatically BELONG.