PWDs

A P.W.D. is the abbreviation for a person with a disability. If you were born with a disability, this term may very well be known to you, but if one is received later in life, you may want to know what a PW.D. is. It really isn't that important to most to even know your actual disability and it really isn't a concern as to how or where you obtained it, which changes it makes it your life, your diagnosis or prognosis, as having a disability is a way of life which is full of nuances, moments of shock, reams of denial, plenty of moments of anger, tons of sadness, bits of hope, suffocating displays of pity, and a huge dose of acceptance of limitations, there are going to be a number of things of which you won't want to be privy.  It is a truly different life and my goal in writing this piece and the caring person who handed it is to you wants you to be "prepare" in a sense.

I used the term prepared, not that ANY knowledge can allow for that to happen, but before my injury, I was completely clueless. I think that whatever light can be, should be made possible.  As I injured MY BRAIN, I honestly figured that I would never find it tolerable that I could accept that fact that my intelligence was less, but especially knowing how comparably fortunate I am to others with similar injuries, I can tolerate it. In addition, after a month-long coma, I woke to discover that my impairments WERE SO NUMEROUS, and my achievements prior to my injury were so solid, that losing some IQ points was fairly tolerable.  I use an electronic scooter when I leave my house, I have soft, slurred, often incoherent speech, my handwriting is beyond difficult to decipher, my limbs shake if I'm performing most tasks, my optical nerve was torn in half, leaving me with double-vision...My list of losses seems exhausting but they is MY responsibility. My family and I have spent over twenty-four years learning and dealing with these things, so I neither expect a cure or for anyone else to immediately understand. Most of your actions and issues are not going progress sequentially, orderly, specifically, or make perfect sense. However, with abundant fortitude, everything WILL get done. Perhaps not in the way others accomplish tasks, but, screw it if your judged. You gotta live your life.


 Here's the deal and this may be the most essential thing to relay. LIFE IS BY NO MEANS FAIR. It's just not. Innocent babies starve. People all over the world get sick for curable diseases. Your pilot might just crash the airplane carrying you because he's having a bad day. Things happen to human beings which just aren't fair. It's not to say that I'm sorry and I KNOW that most of the people who you know are sorry too! There is little they can do to alter the facts though.  If someone or something is at fault, there's a chance that there will be something or somewhere at which to direct your anger and that may soothe you for awhile but it won't ever change the situation. Of course, a good consequence of having money is that life can be easier and that stress is minimized, but, please understand that the basic facts will not change...you will still be injured and if you're harmed like I was, this will be an irreversible fact of life until you die.
This all sounds depressing and I'm sorry to be the individual to deliver this message. At the same time, I don't mind giving you my conviction that all of this happened to you because it was determined that you could handle this. That's right, my friend...you got this. I'm unconvinced that "everything happens for a reason" or that we are somehow in control of our own destiny. Those concepts seem pretty cruel and I, myself, know far too many innocents who had nothing to do with the fates they were dealt. However, as one who  spent a month in a coma, who has been in this culture for twenty-four years (just had my anniversary), and who would never take the time to feed you a line, I feel the duty to inform you of the world you've entered and that you CAN do this.

As the poverty rate of this population is understandably high (as it is hard or impossible for many of us to be competitively employed) according to the U.S. Census is about 80 percent. The good news is that you are an American and are afforded certain rights.  In 1991, the Americans with Disabilities Act was made law.  Though it cannot dismiss the blatant and subtle discrimination which Americans with disabilities face daily, but it's goal. Of course, the laws under which we live rarely translate into an immediate change is the general sense of bias or mass opinion, but prejudices and assumptions DO change with time. Also, there are going to be many good people whom will have your back and hold your flashlight on this journey. As you have changed bodies, those who you call friends will probably alter. This fact is often painful to accept but "it's not fair." Remember?

  Before going, there is one other thing you need to remember. Take your medication! Obviously, something is amiss in your biology and medications (meds) work to stabilize.  Meds can not only mentally and emotionally work toward our well-beings, but physical changes can occur...honestly.
Especially at those times when you feel healthy, resilient and capable, remember to pop the pill that made you feel that way. As someone who has her masters degree in rehabilitation counseling and who worked at the St. Louis Psychiatric Rehabilitation Institute, I have witnessed the wonder of meds. At the institute, eighty percent of our clients were determined to be not guilty by reason of insanity. Some had conditions which decreased their inhibitions and other law-abiding behavior but the majority (eighty percent) were mentally disabled and were determined to to Not Guilty for Reasons of Insanity (N.G. R. I.). For one of a multiple number of reasons, these folks had stopped taking the medications which kept them sane and stopped them from pursuing illegal acts. Because authorities had placed those folks into an institution (prison) where their diagnosis was discovered and the taking of their medication was monitored, these people were determined "not guilty." However, these folks were still locked-up and were not allowed most of the freedoms that the rest of Americans enjoy. Take your meds!


Please remember, I am on the side of persons who have acquired disabilities...not your parents, social worker's, Department of Human Services' director's, or best friend's. Those may all be lovely people who are looking out for you and it would be nice if this essay somehow makes life easier for them, but, no, I'm speaking directly to you. 

My Time at the RNC

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From: jaiarose@msn.com
To: jaiarose@msn.com
Subject:
Date: Sat, 11 Feb 2012 06:32:34 -0600

1. 
   

2.      After I demolished my car, I lie comatose for a month and have a traumatic brain injury. As a consequence, my sense of balance was pretty much destroyed, I have double-vision, delayed reactions to possibly harmful events is huge. Thus, I have been in too many the emergency room and have return hospitals from coast to coast on several occasions, mainly due to this vitally important loss. Logically then, I should consider myself as a fan of medical procedures and innovation.  However, I have had a lifelong distrust of the medical establishment and this was only compounded by my disability.  I have been arrested bamy disability. Thankfully, the whole episode was fairly comedic but the issue at the core is not funny and this writing is not meant to undermine.

3. 
   
4. My four younger siblings and I were all born at home so from the age when I could judge where certain events took place, I automatically saw birth as a natural process which did not necessitate surgery and thus, a hospital.  Currently, most infants are delivered in a hospital-setting, where access to surgical medical tools and obstetricians is immediate.  Our country's cesarean rate is at 25% and  this is ridiculous. Women have had babies for thousands of years where a surgeon was not necessary, but because much more money can be made when a baby is produced this way, the rate is what it is. As she has delivered over three hundred babies as a lay midwife, and only saw a handful of cases where the woman in labor needed to be transferred into the care of a "backup doctor", I have always been keenly aware that often traditions do not portray real need and standardized medical journeys are not always beneficial. 
5. 
   
6.  Because of an illness, injury, or something which accompanied them at birth, thousands of United States citizens have been placed in nursing homes (aka, long-term care facilities, residential facilities, etc.)  Many of these places are lovely and provide things that spending days in one's own home could not.  Plus, there are family and medical reasons for placement. My remaining grandparent lives in one of these centers, says that she enjoys it, and having visited, I can attest to the fact that it is lovely and she is comfortable and happy.  As her son lives nearby and keeps in contact with her, the entire situation seems positive.  However it is a privately-funded home and she is in her nineties.
7. 
   
8. On the other hand, residents of some facilities which are funded by the government or people who rely upon government funding, are of all ages and the environment is often not so serene.  They are dependent upon others to assist with a daily need and some were abandoned by family.  In a few situations, abuse or neglect occurs.  The alternative is usually preferred and consists of leaving an individual in his or her own home and having an assistant or aid visit for a few hours a day or week, providing care.  Since I now have a traumatic brain injury, this is personal. Placement in any environment where my status of dependence on others put me at risk of neglect or harm is unacceptable.
9. 
   
10. My disability is a traumatic brain injury and when it began, a lifestyle which, among other things, tremendously impacts my coordination and balance.  Hence, I also use a walker, but that is usually my mode of assistance on more private occasions, when an explanation is rarely necessary.  Hence, I rarely walk without some kind of assistance and often it is a scooter, which is commonly used by the elderly.  Actually, many aspects of my life are also common for individuals of different ages, so it is not odd that my concerns would vary from those of most forty five-year olds. Admittedly, this is an odd way to live and although my family and I should be experts at predicting probabilities and possibilities, even we are still learning and accepting.  Some of our other deficits symptoms are in the cognition and memory categories and deficits in these areas are also found in some elderly people.
11. 
    
12. A nursing home might also be called a residential (long-term care) facility and it is important to say that many are incredibly well-run and offer enjoyable experiences.  Like everything, there is an alternate side and many, especially some run by the state, are nothing more than warehouses which remove many of our constitutional rights. Abuse has even been reported and sadly, the residents of those facilities are usually prevented from speaking of these experiences.  Therefore, it is the responsibility of unrestricted citizens who are concerned to demonstrate their dissatisfaction.
13. 
    
14. An easy-alternative to living in a residential facility is in-home health care. When this situation is in play, a worker enters the home a few times a day and provides whatever care that for which the individual needs assistance, whether it be food preparation, bathing, help to run errands, dressing (obviously, the list goes on). This type of care is, of course, much preferred by most, is much less expensive, a is not the usual option of families in need of help. Nursing homes and residential facilities employ many people and are usually backed by a medical system that has tons of resources. Thus, when recognizing when an individual requires help, the usual course of action is placement in a nursing home...regardless of age.
15. 
    
16. Residents of long-term care facilities have few freedoms and seldom have a choice of how they spend their time.  Unlike prison, no offense has been committed. As stated, normally residents who are forced to live in these places are in their seventies or are older. However, since many aspects of a disabled person's lifestyle mirror that of an older individual, in some cases, institutization is the forced by the state. Currently, the national bias makes institutionalization the immediate choice.  The other (more humane and economically solvent choice is community-based attendant care. In these situations, an attendant or aide stops by someone's residence for a few hours a day and provides the necessary care, whether it be meal preparation, assistance with personal care or medical service.  Of course, actions and needs vary but I have lived alone and just employed an attendant since grad school. Thus, I am incensed over the fact that people my age are often placed in nursing homes, although their only crime was to be born with something or to, like me, get into an accident on an icy bridge.
17. 
    
18. After dealing with the trauma of getting a disability, or after being released from a long-term care facility, there are a myriad of skills to learn.  Although my support and education came from college and my family, soon after my last move, I learned of centers for independent living.  These centers individually help folks with disabilities to successfully live independently and are part of a national network called NCIL, are located in most urban ares, are staffed by individuals with and without disabilities, and find varying degrees of success, try to meet the needs of an undeserved and largely impoverished population and are underfunded.  However, they do what they can and a while after I began my time of being on the board of directors at the local C.I.L., I learned of ADAPT, an organization started by a man named Bob Kafka.  It seemed pretty clandestine and exciting as it collected folks from all over the country to protest various unfair actions and laws.  Additionally, it actually freed people from nursing homes!  Many of the living conditions at these places looked deplorable.  Hence, my involvement with ADAPT seemed like the right course of action and I introduced myself to Bob via email.
19. 
    
20. I should repeat the fact that this group did not meet in my home state.  Hopefully, there is some connection now, but good change often takes a long time and I am involved with other worthy non-profits.  Plus, I have this problem called a traumatic brain injury and it's pronouncement in my life has slowed me down and given my a number of more pressing issues to tackle.  However, at the time of this episode, I very excited about possibilities and Bob seemed happy to hear from me and so began the trip that led action which began My Time At The RNC
21. .
22. Bob reported that the next national action (protest) of ADAPT would be at the in Washington D.C.   The Community Choice Act gave in-home care preferred status over residence in nursing homes. It had been signed by Barack Obama and Hilary Clinton, but had yet to feel the pen of John McCain. Thus, we were to meet at the Republican National Committee to request that he sign. A lifelong Democrat, I have always felt a bit fearful and disgusted by the very name the Republican National Committee.  Although I've now been there and have seen that it's only a big, concrete building of lawmakers and defenders, I remain quite surprised over our antics in this building.
23. 
    
24. First, we tried to speak with the secretary of Health and Human Services.  After discovering that the secretary was out, we gathered at the headquarters of Republican National Committee.  Honestly, I have a fairly dim recollection of the actual event but I do remember that we had the support of the teamsters' union and many honking semis drove by, adding to our calls for McCain's appearance and answer as to why he had yet to co-sponsor.  After a few hours, we were warned that our arrests were imminent if we did not vacate the premises, but I am doubtless that everyone felt as resolute as myself.
25. 
    
26. After meeting only one other individual who had sustained a traumatic brain injury and hearing his story, I realized my good fortune.  For one, my mother was able and willing to retire from her part time job.  Needing to live outside my family's home was never even a consideration, much less a threat. Additionally, I had gotten my masters degree and come from a family who will always be able to help me live on my own.  Most Americans with disabilities live in poverty and are reliant upon state-subsidies. I enjoy Medicaid and Medicare but my primary financial assistance comes through private means. While most of my life has been forced to take a completely different route, I cannot complain of being unhappy and I am confident that few would offer me much pity after learning my family, travels. education, and the joyful potential of my future.
27. 
    
28. However, due to partially paralyzed vocal chords, unless you claim to be my sister, it is to ALWAYS understand me.  My voice was once a beloved highlight of my life and led to a part time job as a radio announcer and secured my placement in the chorus and on the speech team. Because of balance issues, I have entered the emergency room about twenty times.  Because of a history of "locking" my left knee and screwing up my leg, I currently have this painfully arthritic knee and need to fasten electrodes to it that provide enough electronic current to it for it to be useful. As a favor, I will refrain from mentioning the other insults I derive from my body on a daily basis, but I need to state that I fully realize how dependent I am and how few are the factors that separate me from institutionalization. Yes, I was determined that John McCain sign the initiative.
29. So, after our large group of mainly wheelchaired-people would not cease loudly chanting slogans like, "our homes, not nursing homes" and "we want choice NOW," we were threatened with arrests. Calmly, Bob spread the word that being arrested was fine...we had attorney-help to navigate our way to easy-release.  Although it has been established that I should never trust my own judgement, I believed Bob. After hearing of ADAPT, I learned that their actions frequently resulted in arrests. Whie being handcuffed with several other in chairs was new to me, it was old-school to ADAPT.
30. A large factor in the determination that it was acceptable for us to be arrested is simple and architectural. The jailhouses in Washington D.C. are inaccessible. Thus, we would not be plunged into some dank cell to face other criminals of the District of Columbia. It was thought that we might be taken to a park or some other large, publicly-owned spot which was one level.  Unlike the police officers near my home, the majority of officers surrounding our group of protestors was pretty young and good-looking. The prospect of spending a large amount of time looking at the faces of a bunch of cute guys was not a bad fate.
31. 
    
32. Our group was getting lots of attention and the question of how to proceed was in the air.  After a fairly short amount of time, one of the members of the N.R.A. private security squad, an office worker  or some random senator must have reminded someone in charge that there were some spacious rooms IN the building that might be useful, because in short time (I'd say "immediately," but a large group of people in wheelchairs don't do anything "immediately") we were told to relocate to a certain room in the interior of the building.
33. 
    
34. As the day promised to be long and I love to drink coffee (vanilla lattes are my favorite), after wheeling past a few workers with mugs and snacks, I realized that there was a cafeteria and I requested that we stop.  After being given the nod, I began to feel a little better about my incarceration. This vibe became even warmer when the officer reached for his wallet. "Is this really happening?" was my initial though. Although this episode happened years ago and a few of the other details might be a little fuzzy, I firmly recall that thinking those words.
35. 
    
36. Once the transaction was made, the officer who had taken me to the cafeteria pushed me down the hall and steered me to a spot in the rear of the long line of wheelchairs. As most individuals who utilize wheelchairs are SPINAL CHORD-injured, almost complete independence is achievable once the person is in his or her chair. As my brain was the lone organ injured in my wreck (accident) and the brain controls every muscle and function in the body, way too much was injured for many things to function...including the ability to walk unassisted. If the injury occurs to someone's spinal chord, it's always a loss, but the main question is "where?"or "at what level." Damage occurs AT the point of injury and affects (paralyzes) everything beneath it.  If the harm was exacted at a low point in the column and only two of the person's limbs are paralyzed, the person ends up being a paraplegic ("para" means two). If the injury occurs farther up the on the column, one has a greater opportunity of being a quadraplegic and all four limbs are impaired ("quad" means four...but you probably figured that out).
37. 
    
38. As stated, my brain was my lone organ to be injured and every single brain injury differs from every other. Various cells, synapses, and spheres control all function. Not only is each individual hurt at a different location than another, but each person responds differently. That being said, there are, of course, things that we all have in common. It is usually interesting (if a little annoying & embarrassing) to view another with the same injury and to not only truly understand many of the issues and difficulties with which they deal, but also how he or she is coping with the differences and how that person's support-team is helping.  For instance, hopefully, my readers recognize the name "Gabrielle Giffords."  She was a senator from Arizona who was shot in the head.  When her injury occurred and I heard of it, I was sad and wished her luck, but failed to give it much attention. Recently, I saw her on television and recognized many of her characteristics as ones that I have. They were announcing her retirement from the senate and I am happy to hear that she has finally faced reality. "A senator?  Seriously? Most of us don't have the where-with-all to realize that dessert is the final dish of the meal and someone told you that you could maintain the type of job which creates the laws that govern thousands? Ouch." As I returned to a prestigious college following my injury and went on to earn my masters degree when my neurologist doubted that possibility, one might expect me to have the belief that the advice of neurosurgeons and other specialists could be ignored.  However, along with my degrees, I have also been a witness to the million of negative effects that show when this type of injury occurs.  For example, I have never met anyone who did not speak of memory deficits.  Having ataxia (shaking limbs) is also common among us. People always beat the odds. Sure, but I bet most folks who are blind don't necessarily count on seeing anytime soon.  There are things we just need to accept. It may take years...it may never happen...or it may take years." There are those people, like my friend, Mike, who quickly adjust and just seem to be immediately ready to adjust to an entirely strange, new life. Mike may be one of the very few or he may be hiding his real issues from me...a girl and his peer.  Long ago, I was with a group of people who had been both spinal chord and brain injured. After several other question, they were asked which type of injury was worse. The consensus was definite.  "Brain injuries because they are totally personal. With spinal chord injuries, society has to figure it out. They just have to accommodate ME. Having a brain injury is definitely worse. It's personal." That, too, has never left me.
39. 
    
40. As all of those involved in the action were in wheelchairs, the chain of events that transpired that day went at a sluggish pace.  When regularly-paced needs are accommodated to be useful to members of society who are in wheelchairs, action usually happens at slow rate. As I had been disabled for about fifteen years when the arrest happened, I had a little foresight. Hence, I asked for coffee. Before a friend or my mother and I leave to do errands, I try to bring some reading material along.  This is done so that I always have something to do which I enjoy.  As I readily agree that getting me, my walker, or my wheelchair out of the car for every little errand upon which one embarks is not a good use of time, others understand and even help me locate the reading material. After entering, we were told form a line to be fingerprinted and, naturally, there were problems. Someone was allergic to all types of ink, another person had to use the restroom and the one closest was not accessible. I got the opportunity to listen to several members of the movement who told wonderful stories of other actions.  Unfortunately, a depleted memory is a staple in the diet of those of us who are brain-injured. If Ms. Giffords felt fully able to create the laws by which thousands, more power to her, but I'd probably just I giggle and wonder if she could recall any of those mandates the next day.
41. 
    
42. As is probably known, we elected Obama. Thus, the bill is a federal law, but since states are primarily in charge of this type of funding, it is not Obama's decision.  The day did create a good memory for me though.  I fondly recall being asked out.  As I am forty, it's been done on other occasions, but my Miranda rights were never involved.  After I was fingerprinted, there was still some ink left on my thumb and after my the bottom of my thumb was coated on a dark ink pad and then carefully placed on a legal document, I had all of this residue. After looking around for a towel, one of the cops hurried to my aid and produced one. Being new to the whole world of "the criminal," I was kinda embarrassed so when the cop in question ask me what I was doing later, I was definitely not trying to be coy or appealing. I replied that I had no idea to which he remarked that he and some friends would be at a certain bar on the Hill by nine and asked if I would join them. He, then, wrote down the name of said bar and once again, I remember thinking, "Is this really happening to me?"
43. 
    
44. Sadly, I didn't even bother to take a cab to the bar. I forgot. As I have this brain injury-thing and "forgetting" is typical to one who possesses my type of injury and is the nature of the beast. Although, he was very cute and it makes me grin to recollect the events of that day, I have done much, much worse.  Still, I do regret that I forgot to meet that cop, not because some incredible romance would have occurred, but because he was nice and cute.  It might have made him smile too.  However, the dude is not locked-up in a nursing home. Thus, it is fairly easy to keep my sympathy at a low-volume.
45. 
    
46. The entire experience is fairly fluffy and amusing; flying to D.C protesting, being handcuffed and arrested, being asked on a date, forgetting said date, blah blah blah.  Like many things in life, the reality of WHY you are really angry or the exact reason behind the scene seems rather existential and a pretty light.  However, life and fate got together and decided that I needed to be cognizant of the reason for ADAPT and their "lawless" behavior. Then, I got to discuss things with Katie.
47. Soon after she and I met, I became aware that she had been a resident of an institution.  However, not until recently was I able to have a long conversation with her and to realize the magnitude of the Community Choice Act's influence on people's lives.  As she was born with her disability, the transition to an out-of-state college resulted in depression which led to a few attempts at suicide.  Katie admitted herself to a residential care facility where her social security payments were used to cover treatment and rent.  After she was abuse, she was transferred to another institution where she was not harmed but where all of her activities were monitored and her agenda set by the staff.  As Katie is about a week younger than I am, the very idea of this type of dictatorial living condition is as grotesque as it is horrifying.
48. 
    
49. After release from this totalitarian-like environment, Katie relocated to an apartment building and is a success story of the independent living movement. All humans are assisted along on our journey.  Thus, although a home health aid stops by a few times a week, Katie she makes all of her own decisions, has a plethora of friends, drives and partially owns a car in a Co-op.  She also keeps close contact with her family, is employed in two locations, never relies upon the permission of others and co-owns her own home.  As I amble about my life, others regularly tell me that I'm their inspiration or their hero and I usually just grin, nod and take the compliment.  However, I always think of Katie. Getting asked out by a cop pales with the feeling this act has given her.

travis

Travis

When reading this piece, there are a few items to keep in mind. The action I took may seem compassionate and brave (I am neither), this incident took place many years ago, thus my recollection my be a bit hazy, and the focus should not rest upon the two main characters (Travis or I). It demonstrates the unquestioning love I often get and require from two of my younger siblings. Although the two are younger and non-brain-injured, they seem to know that  am neither unquestioning, this type of allowance should never, ever be repeated and the fact that I am able to smile as this is composed is testament of dumb-luck and this silly belief in trust.

Although I have gotten to be much more mindful, my track-record has blemishes which are hard to shake and expect others to forget. Although I have had a traumatic brain injury for nearly a quarter of a century, I make missteps and miscalculations. However, I also know some facts and have a decent amount of compassion. I also know that my home-state of Iowa has an unbelievably low crime rate, my parents live across town now, and having two degrees, I usually feel quite competant at making the few important decisions with which I am presented. it is almost impossible to determine whether there is honest concern, whether she or he is just attempting to display kindness to others around me, is the person is underestimating the level of function one normally achieves after being disabled for twenty years or if the concern is genuine.  After all, I have a traumatic brain injury which puts me at risk. Although I somehow received two college degrees, my judgment and reasoning skills are impaired, I am astonishingly slow and have absurdly slow reactionary skills, and the manner of which I appear to the world makes me vulnerable. For these reasons, some would claim that the very existence of Travis in my life the result of a huge error in judgment, but I would disagree. This experience solidified my brothers’ faith in me and that gift is priceless and gives me reason to know that everything will come out okay.


My meeting with Travis came upon a January-weekend in the state of Iowa. After misplacing my winter coat at a distant shopping mall, I stopped at a tavern to soak-up some warmth before the final trek in the bitter cold. Fighting to warm-up, I began a conversation with this raggedy-looking guy near me. He said his name was Travis and that he always felt rather comfortable in taverns.  As the talk progressed, he, without a trace of embarrassment, mentioned that his parents “had lived at the local bar” and that he “knew their life was bad” but that he could not live differently. While I completed my undergraduate studies, I took several classes in Sociology and had studied alcoholism and had read much about the lives of children of alcoholics. Fate seemed almost inescapable and the number of their challenges was overwhelming. He was one of those kids. School, social, and educational worries were compounded with the turbulence and insecurity of living with and depending upon adults who lacked in rationale and who could barely care for themselves, not to mention innocent children.


We spoke for a while and he seemed very kind, friendly, accepting, and, strangely, trustworthy. Travis was also incredibly inane, which only added to his trait of being trustworthy. Dreading my long, open-aired ride home (because I am disabled, I travel in a scooter), I spoke of my warm bed. Quite unconsciously, he remarked on his lack of a bed and my fortune. Immediately, I thought, “Inviting him may not be the smartest thing you have ever done, but who cares? It’s freezing. You aren’t exactly invincible, but…God, you have a big, warm place…AND two beds! He’s fine. This is fine. It’s cold. It’s bitterly cold.” Thus, I said, “Well, I think you should stay at my place. C’mon. It is way too cold out. I’ve got an extra single in my living room.” Of course, he acquiesced and followed me home.

After my session with Travis, I vowed never to allow to allow the weather justify a decision such as this. First of all, bad habits do not vanish easily. Although I told Travis to use the shower and washer often, he preferred to sit on the couch and watch television. As I had an infinite number of channels, I could easily tolerate this and just kept reminding myself of the temperature. Secondly, I never dance around my house without clothing, but it is my personal space. Hence, if the occasion demanded it, I could. My parents worked hard to allow for me to allow for their children to have adequate shelter. However, the night we met was bitterly cold and my conscience just wouldn’t allow for me to get a moment of sleep while having the knowledge that he was somewhere outside.

He said he had a job, so unemployment was not the cause of his situation. Apparently, he had managed to hold some job and had some access to food but was too stupid to save that money to use for lodging. I really cannot give more details. Providing warmth and some safety were my main concerns. Hence, I never delved. He was dumb and, although he tried to hide it, was usually drunk. Since he left, I have done some reading on folks who are homeless and have discovered that a full third of them abuse alcohol. Trying to use a scapegoat, he would always tell me that, “A mob of Mexicans jumped (him).” To this excuse as to why he was constantly broke, I just nodded and offered a few words of consolation, but I knew where he earnings had gone…he drank them.

Homeless shelters have rules designed to stop inebriation and if I were in charge of a shelter or if I were a social worker, I would have treated the entire situation differently. Instead, I just was cold, sympathetic, and was saddened by his life. Also, as someone who has not always used her best judgment, I was somewhat understanding. Plus, I have lived in the great state of Iowa for most of my life and have seen the effects of frostbite firsthand on several occasions. These winters suck! Too easily, I quickly recall the throb of my hands from spending just a few minutes in the air’s bitter freeze and I have a history of placing my hands under a stream of lukewarm water only to wince in severe pain as they thawed and the feeling in my nerves returned.

As stated, I have a traumatic brain injury aand live alone.  Thus, I had this single bed in the living room and someone, usuaally a parent, would sleep there upon a visit to help with something. Being fairly compulsive, it may not seem at all logical that I allowed this very unclean individual to co-habitate with me, but I did laudry all of the time and was fairly eager to share the over-abundance of foood my mother sent home with me.  In the end, the worst part of housing Travis was the odor. Unfortunately, his work kept him on his feet all day and he constantly wore these big, work boots. I doubt that they were ever cleaned and they had this odor which I hope to never smell again. After dealing with that foul smell after one night, I asked Travis to leave his shoes outside. He readily agreed but despite his best intentions and my relentlessly reminding him to shower and to wash his clothing, he was unable to follow through on his promises to keep clean and odor-free.

As I was not employed, it was not too difficult to clean after Travis or hide our living situation.  Although I am/was not employed, besides sleeping, I rarely linger in my home for long stretches of time to monitor all the activities, but Travis was gone all day.  He said he was at work and while I cannot testify to that, I will say that he wasn't around. After the initial night of feeling good about saving him from the cold, it was a bit worrisome to know that a stranger was a few rooms away from me while I slept. I would never suggest that I am a woos or a wimp, but the fact was that he about six inches and a hundred pounds on me was a bit daunting in retrospect.  As seemingly-harmless and grateful as Travis seemed, it was somewhat amazing to consider the amount of male friends a woman can get to pay her visits.  As these friends seemed to trust my judgement, none of them questioned me about my visitor. However, hoping that the knowledge of so much nearby "protection" would impress Travis, I definitely let them know the nature of our relationship in the presence of Travis. Really, I doubt if that action was necessary.

Although the obligations to my sense of smell only permitted his visit for a few days and I was not sorry to witness his departure, all in all, I found little reason to doubt his honesty and gratitude and don't truly regret my offer. There should be some sort of law essuring all Iowans a warm bed during the winter.  Plus, my cat, Grace, adored him and they often played. As I replay the period of Travis’s stay over in my mind, I feel regret and remorse with a twinge of shame. Not that they do a great job, but our country’s social systems were created to help guys like Travis. I have a masters degree in rehabilitation counseling. If I had my life together, it should be my job and skill to help people just like Travis. And all I could do was to offer him a bed. I really didn’t have to exert my self. To establish permanent help for him, I ought to have escorted him to the Housing Office, the Salvation Army, the Department of Human Services, or to anyone who might have provided further aid. Additionally, I looked for no help from Alcoholics Anonymous or anything. Basically, I constantly complained about his body odor and other bad habits…not very compassionate. Essentially, it was a harmless incident, but I felt a bit intruded upon and would have been glad never to see Travis again.

As usual, my way was paved with good luck again when a year later, I ran into Travis. Melanie and another friend, Smita and I went to this pizza place to say goodbye over a pie. I was leaving for a trip to visit my brothers the next morning. As we sat, I casually noticed some sketchy-looking folks at the bar. Turns out that Travis was with them and after a brief inquiry as to his current living situation, I found nothing had changed. When we had finished, he came home with me. She is responsible to the gills, but she allows me room to screw-up, so Mel grimaced about leaving. However, she loves me and lets me make mistakes. Sage was playing ball for the Dolphins, but his season was complete. As Jeremiah had relocated to Miami to teach high school, he was rather near Sage’s family and lived in this cute apartment with spectacular view of the city and the beach. I had given my friend, Lisa, a spare key and she agreed to come-over twice daily to feed Grace, my kitty.

After spending the weekend with Jeremiah who lived in a great apartment in the city, I switched-over to Sage’s to spend my remaining time with his him. He lived in a suburb near the practice facility with his wife, Maria and their two kids, Peyton and Ava. After being there for only a day or two, I was alone with Sage, his cell rang. It was Lisa. She demanded that he ask me why she had found “a naked, homeless man watching TV” in my home. Directly after Sage asked, I knew exactly who it was (although I had no clue how he managed to enter my home) and I attempted to alleviate any of his concerns. Having spent his preceding years of his life in Iowa, Sage knows how cold it is in the winter.

Additionally, after seeing the high-priced life that for Sage, I doubt if he was worried about possible costs of any of my belongings. As I did, my brothers learned at an early age that “things” can always be replaced, so that was not a concern. Essentially, I seemed to be in fine shape and he trusted me. I am pretty well-known in my family for doing nice, harmless things which may be a tad alarming to outsiders and if I had glimpsed a hint of dishonesty or rudeness from Travis, I would have never allowed for him to stay in my garage. At the time, I didn’t really concern myself with the relevance of shelters (who, by the way, are fabulous but who have definite rules against giving beds to folks who are high or drunk). Even now, as I sit before my computer, in warmth, I can hardly fathom the decision not to give Travis (or anyone else) a bed. It was just so damned cold. Too cold.

Being a concerned, responsible friend, Lisa was livid and remained unconvinced that it was all right and that there was no threat of danger. Lisa is much younger than me and does not really have the luxury of knowledge of my history with innocent dealings with folks who do not seem of average means. Plus, she is quite young and does not really know me enough to realize that I am not gullible or too-brain injured, nor does she possess the knowledge or have much experience to understand what is a big deal and what is not. In the end, any bad feeling involved in the situation are my fault. Realizing that I had not taken the time to call and warn her that I had a guest in my garage, I felt tremendously irresponsible, but my level of alarm was at a minimum.

Upon my return to frigid Iowa, I found him in the pedestrian mall and, of course, inquired about the mess. Apparently, I had accidentally left my rear sliding glass door unlocked and, remembering my warm shower, he had disrobed and had washed his smelly laundry (I assume). After the shower, he walked up to the living room to watch TV and play with my kitty. Coincidentally enough, Lisa dutifully arrived to do her duty and had discovered a guy lying in my living room. Since he was freshly washed, I guess she was only offended by his presence and not his odor.

As I am disabled, people are very protective of me and my actions live in constant doubt. Not only do I use a wheelchair, my voice leaves little doubt that my intellect has been compromised and I will candidly admit that I am quite defenseless and that there have been times to second-guess my actions. However, after hearing that I was providing food and shelter to a homeless man, my brothers, of whose respect I most crave and in which I take solace, never even said anything about it to either of my folks. I told them that he was harmless and they trusted my decision-making abilities. Their silence felt good. Still does. It is the reason that I never take other people’s criticisms too seriously. Although I enjoy the compliments of others, my family’s opinions mean the most to me. They mean everything.

Recently, I was downtown and I ran into a guy who was aware of my relationship with Travis. As the pair were in similar conditions, I have no idea if the man was being honest. At forty-six, I'm well aware that folks often fib or tell little stories which they  may tell to alter an opinion. All of the friends of Travises who I knew were homeless and their honestly speculative so I have no clue of the credulity of the facts but this guy said that he heard that Travis had come into a bit of inheritancee and was no longer on the street. Wish I could take the man at face-value because it'd be a great comfort. I wish Travis the best.

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.