Ms. Edwards

Update April 21, 2017
Good morning. I am still here. Still bucketing out water from the bathtub to flush the toilet. Other than that I am fine. I am hoping that by May 12th a final decision will be made and I will have a lease that will give me the power to decide where I choose to stay. It could be either the apartment I am currently in after major repairs would be made, or another unit that is clean and safe within this same complex. In order for me to have the power to make these choices I have to win the case and win the lease. 

The reason I am writing this update is because I am not the only person facing a phone scam. This happened two days ago. I spoke with my attorney, who provided information about how to resolve it. Someone claimed to be from the IRS said there was an action filed against me. It turned out to be a fraud. The phone number and badge number of the person who contacted me was all a fraud. That was verified yesterday (april 20) when I contacted the IRS office in Washington directly.  

But you can understand it can cause fear, anger, and anxiety for any person, brain injury or not, when calls like that happen. I mention this to warn people not to accept calls like this. Contact the IRS office directly. When I spoke to the agent at the IRS office, she explained it’s a long process when an action is actually taken. There are formal letters sent, and not a phone call before any kind of action is taken. If this happens to you, contact the IRS office in Washington directly. 

Thank you for listening. I am still here, sick, weakened by this mold infestation, but I still have the fighting spirit. I wanted to share this experience to let people know about this scam, and to be careful and do not give out any personal information!  I pray my attorney will be successful in the court case. I am blessed that he is a brilliant and wonderful attorney. He will do his best to save me. Have a safe and good weekend. 

Nov 8 – Election Day

The drama never gets dull. Today I received a call from APS. The twist of irony is it’s the same APS from last year. The same APS (Adult Protection Services) that said I am perfectly capable of handling my own business. Their services I do not need. The letter sent by APS stated that I do not need their services. This letter was sent to me and to the courts.

My name and number were given to APS by this so-called GAL (Guardian ad-Litem, or Guardian named by the court) representing me, me being traumatic brain injured. Moreover, when I first met this GAL he asked me if I needed APS. I stated I had problems with APS last year, and to please look at the court records. The GAL did not ask my permission to share my name and number with the same agency I had trouble with (APS). APS stated to me last year their job was not to protect me, but if I did not have a plan, I was to be placed in a shelter.

Now I am more terrified than I was yesterday because I don’t know what will happen at this point unless I have an advocate that understands brain injury, a newspaper reporter, or an attorney. I am trying to work at this as fast as possible. So now I am praying and hoping for the best, I can’t do anything else.  The only saving grace that keeps me fighting, that keeps me sane, is a man who is a chairperson, an organizer, and a dancer. He name is Mr. Sheldon Raymore. He is an activist at the American Indian Community House. I want to thank him for his kind words and his dancing helped me spiritually, since I am American Indian heritage. Thank you for reading, I will keep you updated.

I am okay today, but I have been very sick and losing weight. I am sending out an SOS hoping that a social worker, newspaper or lawyer help. I have to let the Housing Management in to fix the leak, but not without someone else here. I don’t know where I will end up. I will post later in the week. Thank you.

Update August 2016
Good morning I have updates about my situation. I was assigned a GAL (Guardian Ad Litem) it’s a social worker with a legal background. Unfortunately he had personal issues, he did not like to be pressured, and he did not like to get up early in the morning. The judge was angry, and decided I should have a new GAL which did occur a week later. So, since then I have been assigned a new GAL that seems very professional but is not familiar with my case yet. I have to give him time.

Since then I have seen two attorneys, one related to housing and the other an advocate for the rights of disabled people as well as lawsuits. I presented my case and evidence, and since last Friday I have not heard from them yet, but I am hopeful. 

One of the lawyers was generous. She gave me some money to help me along until the first of September, which she did not have to do. I am still living in this mold infestation, I have lost weight, I am 112 pounds and I have problems with my brain injury, but my spirits are still high. I wake up early and I go to the window between 4 and 5:30 in the morning. Being of American Indian heritage I believe the great spirit is everywhere. I see a wisp of clouds and I see my mother in those clouds and I pray, which gives me strength for the day. I ask for justice, to have the money to help others in similar situations as me as well as love and protection which my mother wants me to have after all of this is over. I hope I am able to achieve all of this, and I pray for this to happen and for me not to be too much of a burden to those that have helped me, and to demonstrate and teach them to have acceptance and empathy towards those that are not so lucky, and I pray for them to my mother.

There are a lot of twists and turns in this saga which continues. A journey and a lesson that I have to learn and I am learning. I thought about the passage in Psalms lately about us all returning to dust and how our days are numbered and how we can make our lives count. What’s befitting is this quote from Mahatma Gandhi, “We must be the change we wish to see in the world.”

This quote depicts me in the center and all these people and forces surrounding me, but I still see a clearing and I can take a breath. So I conclude that I must be that change in terms of forgiveness, being of service to people through the experiences I have had and in turn I must effectuate a change in those that have disrespected me and caused me a lot of suffering. 

I will update again soon, and thank you for your support.

Update: Dec 30, 2015. 

Happy New Year to all the readers. Thank you very much. It’s a shame that people with brain injuries cannot get legal aid representation right away. My friends say for lack of a better phrase it should be a slam dunk since I am disabled, but it does not work that way I am painfully finding out. However I am hopeful in 2016 two legal aid lawyers will take on my case, and relieve some of my anxiety and stress.

Cognitive difficulties are disarming to those who do not comprehend or just plain do not care. They are totally oblivious and show apathy. Indeed, a definition of what a “TBI Person” should look and act like is very subjective across the board from medical personnel to ordinary lay people. Cognitive difficulties are an invisible wound no one will ever understand. However, if they are caught early and proper treatment is offered,  perhaps the person can return to a new normalcy.  However, most people are not that lucky. I know I am not. It takes many years to get that kind of treatment. But I am hopeful that in 2016 I can strive towards getting better. 

Nov 3
I am still here and still fighting. My Court date is Nov 12 ^th I am still tying up loose ends so I can be ready for that date. Housing management refused to give me a written letter stating on Nov 13 ^th assessment and possible repairs of the apartment will take place. That’s the day after I see the judge, and yet Housing Management has sent letters of threat in the past to me. There is a paradox. A friend last night made a plausible statement “How can housing management have you go to a third level grievance at the same time you are going to housing court to see a judge?”

My friend stated “How does that work?” “Speak to the legal aid lawyer because that is a conflict of interest”.  My friends final statement is it cannot be both at the same time – a third level grievance and a housing court hearing. Also, bad news: Yesterday (Nov 2^nd) Social Security denied me for a third time. The reason is although Social Security acknowledged I have a traumatic brain injury, my medical evidence does not demonstrate that I am not able to work. They said because of my education and age I could perform some light work so I am denied benefits. This is erroneous, ridiculous, a travesty of justice. It’s just not fair. I am afraid what is going to happen to me without that money. I don’t know what the future holds. Thank you very much.

Update October 2105: The management wants me out of the apartment. They want to send me to a shelter. I would not last at a shelter. I have been sick and I am down to 119 pounds. I don’t have any other housing options at this time.

Update September 2015
First I would like to thank the Brain Injury Association of America for their efforts in getting my story out about what happened to my mother July 30, 2015. My mother died quietly in her sleep that Thursday morning. Although it was her other serious health issues and considerable loss of weight was attributed to long years of exposure to mold and other hazardous irritants. Housing management admitted reluctantly that there was a prevailing mold problem within this complex. Unfortunately, the problem for my mother was not addressed properly either through remediation or a change of apartments. If that was done, she might still be alive.

My mother had to move from the 4th floor apartment back in 1998 to 1999 because of renovations to the 4th floor and the roof of the apartment. My mother weighed, when healthy, 160 pounds. She was placed in one apartment that was filled with mold, asbestos, iron and “rodent fever”. She did not know this at the time. It became apparent a couple of years later. She lost 40 pounds. 

She went to the legal aid lawyer and told him the problem. He called the Dept of Health to do testing. That’s how we found out about the high levels of mold and asbestos and iron in the apartment. It was recommended for her to move to another apartment.
Between 2001 and 2002 my mother was told she could return to her top floor apartment. But she said she was too weak to climb 4 flights of stairs again. Her legal aid lawyer tried to find, with the help of housing management another apartment with fewer steps. Thus, the current apartment she moved to was one with fewer steps. However, it was not renovated. 
A few years later she started to lose weight again, starting in 2005. Headquarter for housing management stated the apartment that she lived and died in was renovated.

From then on, she steadily continued to lose weight from her 120 pounds until she had to have emergency surgery in 2010. It stopped some of her problems, but she never really gained back the weight she should have. Unfortunately, she had to return to the apartment which created the issue in the first place. And then, besides the sink which broke and overflowed with raw sewage in 2012, we (my mother and I) did not have anywhere to prepare our food. We had to eat prepared foods until the day she died. Housing management never really addressed that problem.  

Then in 2014, my mother’s demeanor changed. I wondered why it was like that. Her behaviors, her balance and memory issues were similar to a person with a TBI.  I asked questions of doctors and did research. I found out to my surprise that long term exposure to molds can cause memory and other related issues which are similar to a person who sustained a brain injury. It’s still a new phenomenon, and research is being done, because the etiology is still questionable. 

A couple of weeks before my mother died I spoke with doctors that I visit to treat my TBI. I set up appointments for her to see a neuropsychologist and vestibular rehabilitation as well as blood tests to see if she had mold toxins or oxytoxins were present in her blood.  Unfortunately she died before all of this was completed.  Now, I am left with constant harassment and guilt on Housing Management’s part, not being given time to grieve over my mother’s death. However I am not easily intimidated and I will press on to fight for justice for her.

I am not the only one whose parent has died under these similar conditions. Within this same housing complex these same people have the threat of eviction too because of it. Overall, all this makes me think about Einstein’s theory of relativity. I wish to explain that. I wish to tie relativity with “pure irony” of my mother’s sudden death. Einstein stated eloquently that for every action there is an extreme and real reaction. In other words, it can be towards a positive realm or it can be toward a negative realm. The rippling effect created by Ella Mae’s death is relative because there are so many who face the same tragedy across the United States. The system has it’s inertia which effectively doesn’t move in resolving these cases immediately. The very action of Ella’s departure has an equal and decisive effect not only towards  those who suffered the same but also to the landlords and management in these cases. Therefore, a measure of empathy with a conscious effort towards prevention may alleviate some of this tragedy in the future as well as local politicians, religious leaders and the government need to be more proactive because this problem will continue. I hope to obtain justice for my mother because I have to believe she did not die in vain. Thank you very much and say a prayer for me and I will keep you updated. 

Update August 2015: I am very sad to say that  my mom has passed away in her sleep. We have been battling with the management company of our housing unit. The unit my mom and I lived in was unsafe. The company has refused to address any of the concerns we had. I hope after my mom’s funeral I will be able to address this issue in more depth. People should have access to safe, sanitary housing conditions. Please say a prayer for me.

First, an appeal, posted May 2015:
I did not appreciate and understand the contract I was forced to sign, relinquishing my right to reopen my workers compensation case in the future. At the time, I was told by my  attorneys I had to sign I had no choice, it’s the law. I discovered several years later that my brain injury was not only irrelevant, but medical evidence supporting the fact I have a brain injury was conveniently excluded, withheld so workers compensation would accept the contract without question. I did not discover this until years later. Once I told workers compensation, they responded that my attorneys only gave them neck and back injury medical evidence. The attorney offered nothing about the brain injury period, yet they did nothing and took no legal measures. Further, workers compensation went against its own rule that if a person has any brain abnormalities or injury, they need a medical clearance before workers compensation would accept a permanent contract. Workers compensation refuses now to hear my testimony and they rejected reviewing my brain injury medical evidence. Therefore, I am making a public plea for an attorney, experienced in appeals going to the supreme court, an appellate attorney experienced in reopening difficult worker’s compensation cases. The clock is ticking for me, please respond and I would greatly appreciate it. Justice won for me will help others suffering the same experience.

Ms. Edwards has written several pieces published in the Brain Injury Association of New York newsletter.   
Name: Miss. Raini Edwards
(my heritage is: Cherokee, Blackfoot Indian and Black American)  
What was the date of your injury?  January 21 2001.  It happened at 6:45 am on a Sunday.
Education:  Currently as of 2012 I am still a licensed practical nurse in NY state.  I have been a licensed LPN since graduating high school at age 17 ½.  I also have a Bachelor of Science degree in biology from City College.  I also have a certificate from Baruch College in micro computer programming.
   
My opinion: It’s been quite a journey.  Most of the time it felt like the oxygen of justice seemed to block my attempts to breathe easily.  There is a Native American word, ‘Eluwei’ – from Tsalagi, which is a language of the Cherokee, and it means ‘silence’.  This necessary silence helps me to understand that everything happens purposefully, perfectly as designed by the Great Spirit. Further, despite my major vicissitude, I am resolved and determined to succeed. 

Tell us what your life was like before your brain injury.
Before the injury – I worked corporate business, on assignment at the world trade center because of my micro computer programming skills.  I received a call from a medical agency in Manhattan asking me to return to licensed nursing.  

I saw that as my opportunity to use my nursing background to aid me in applying to various pharmacy schools in the US or in Quebec, Canada.  I desired to become a pharmacist.  So I left my job at the World Trade Center in the fall of 2000.

All brain injuries are not the same, tell about how you sustained your brain injury.
The assignment required me to fill in temporarily for two days over a weekend performing nursing duties.   The travel to the job was a hardship because on Jan 21st, 2001 it was a severe, snowy, blizzard day.  At the job site, there had been no preparation to remove the snow. So the snow packed over the outside door entrance, making it difficult to open. 

Over a period of time, this packed snow melted inside the nursing home vestibule and onto the floor.  The security guard on Sunday was supposed to take over the duties of the custodial workers, who were off on Sundays.  The security guard failed to mop the floor or put down mats to absorb the water.  As a result, I slipped and fell, hitting my head severely.  I sustained a serious brain injury.

The date of the injury? 
January 21, 2001 at 6:45 am Sunday, on a snowy blizzard day.

I was angry mostly that I fell when I realized what had transpired.  
There was no immediate outward signs that I had sustained a traumatic brain injury. However, I had a severe headache and pain in my back, neck, and right arm.

I did lose consciousness briefly, and there was a period of disorientation and confusion after my fall. The nursing home asked if I wanted to go to a hospital?  I refused because I was afraid the medical agency would not give me future assignments.  

I tried to focus on doing my job.  I stayed on the job, but wasn’t allowed to do anything because they saw something was wrong with me, so the nursing home did send me home some time later. I was placed on a bus. I took two trains home.  

When I tried to take a shower I passed out in the shower.  My relative called an ambulance to take me to the hospital.  When I arrived at the the Emergency Room the Physicians Assistant (PA) wasn’t concerned about my injury.  I was told by the PA I had sustained a “simple bump” to the back of my head.  She prescribed muscle relaxants, pain killers, and gave me an ice pack.  I asked if I could see a real doctor, and she refused, saying no doctors were on call right now. I told her I was a licensed nurse, and the proper protocol was to give me an MRI or CAT scan, and to keep me overnight for observation as a precaution.  The PA stated “don’t tell me what to do”.  This is not a compensation hospital. I was sent home.  I travelled on a train, alone, after midnight. All this happened January 21, 2001.  I was puzzled by the statement this is not a compensation hospital. I fought for weeks after that to get back to the hospital to get the MRI or CAT scan done.   

The first week of February 2001 I spoke to a head nurse of the ER at that hospital.  She told me to come back to get those tests. The medical staff did not know what they were looking for when they did the tests.  Of course, the tests came back negative. They said “this is not a compensation hospital” again. They gave me the name of a chiropractor.  I said I was in pain.  I was told they didn’t give a damn about my pain, and I should go to the chiropractor.

I went to the chiropractor soon after. He refused to send me to the neurologist or to give me the name of the neurologist. The neurologist wasn’t sure whether compensation would pay him or not.  Meantime, I did not know I had a swollen, inflamed brain from January 21, 2001 until I did see the neurologist on April 30, 2001.

Once the compensation was approved I was allowed to see the neurologist. That’s when I was told I had swollen, inflamed brain.  I asked him to do an MRI.  He said he didn’t need to do that, the EEG was enough. The neurologist recommended for me to go to an opthamalogist and a neuropsychologist. 

In addition, I did not fare well legally.

I do not possess legal knowledge. I trusted those who represented me to help me.  In 2002 I was forced to sign a contract with my attorneys which essentially closed my compensation case permanently. I did ask plenty of questions before I signed, but I received short, rude, abrupt replies: “This is all the compensation you will receive, and the brain injury was considered irrelevant”.  

I was told that in the agreement between the State Insurance Fund and my attorneys it was decided that the brain injury was irrelevant to the final calculations. I received just enough funds to pay my medical bills and other bills. This contract bothered me for years. Then I spoke with my godmother, who was an Italian American real estate attorney.  She advised me in 2007 to write to the workers compensation board to find out the truth. So I did.  My godmother warned me that the statute of limitations to take action against the lawyers that represented me would be against me.  

I found out in 2007 that my attorneys never offered information about my brain injury to the Workers Compensation board. The Board never had the information to consider!  They told me they were never informed about the brain injury by my attorneys and by the State Insurance fund. The only information the WC Board had was about my neck and back. Since I signed away my rights to reopen my case, there was nothing they could do.

The importance of good representation by qualified attorneys cannot be understated. Not only did this affect my case, it also delayed my access to valuable help.

As a result, from 2002 until present, I have lived in poverty, and have been homeless and destitute.  I suffered identity theft, which is the reason I cannot get social security now.

Describe your path you took to gain sustainable life again?
What challenges do you face on a consistent basis as a result of your brain injury?
It has been arduous yet, I am a warrior. I had to take charge in order to regain my dignity and autonomy in spite of the emotional, physical abuse and disrespect I have received over the past ten years. I decided to become proactive in my care, to do research to help me understand more about TBI and to seek help from a few good people. 

The challenges I face consist of I have limited use of my right dominant hand and arm. Because of the numbness, I do occasionally burn my fingers and hand of my right arm on the stove, and I have trouble with writing and other things.  I am still forgetful.  I have to be reminded of appointments and other important business. I get frustrated when I cannot do things easily like I did.  Places I have travelled most of my life I have forgotten, and I have to relearn these places. 

I sleep only 3 1/2 hours every night, then I nap constantly during the day. I deal with headaches 24/7 without relief, but some days are better than others.  I have progressive hearing loss in both ears. I have diplopia and vision convergence insufficiency. Yet I abide.

What is the most helpful therapy, treatment or strategy did you find most helpful?
When I was allowed to go the neurologist on April 30, 2001 I suggested acupuncture because I have seen it work as a nurse.  The doctor referred me to an acupuncturist thereafter.  Soon after, the insurance I obtained did not consider acupuncture a medical necessity.  But it did help me. It did help me to sleep a little better, and it helped to ease the pain a little.  The opthamologist was concerned at that time that I did not receive proper care, so he gave recommendations and he said to keep in touch with him any time I needed help.  He is the one that diagnosed me with the vision problems that I already mentioned. 

The neuropsychologist was very helpful. He gave me work to help my attention deficit and to help me with my vision. He also gave me a miniature computer that was a spell checker, because he knew I liked to write. 

As well, Native American meditation has also helped me.

What was it like finding support after being released from the hospital or physician? What role has support played in your recovery?
I did have a few people who assisted me, but overall, there was no real support after the hospital and after compensation.  In 2004, I found encouragement from the NY Academy of Medicine Library. The people there were generous and helpful.  I also found comfort and knowledge on how to deal with the new me from the Brain Injury Association of New York state. I discovered this organization by accident in 2008.  I have been a member ever since.   Ms. Rachel Swire was able to take me away from that blind alley.  She gave me that life preserver in terms of resources to help guide me.  She was able to help me in my writing.  Ms Swire was able to accentuate the artistic abilities of people with TBI to express their experiences in living with TBI, which does help in their recovery.

At what moment did you realize you had changed forever? Was there a situation or event that stands out as a pivotal moment that heightened your brain injury awareness?
When 9/11 happened. It took me time to process the enormity of the situation. When I first heard about it, I was in a state of shock. Then I thought about me working there and leaving in the fall of 2000.  I felt guilty that I was not still working there, because if I had been, and having a medical background, I could have tried to help those people.  

It took four days to really comprehend everything. I was prostrated for two weeks, never leaving the house, staying inside. I missed doctor’s appointments and I missed meetings with my lawyers. I pray for the past 11 years for the families, friends and colleagues who lost people in 9/11. I hope I will be soon in a position that I can pay some sort of tribute to those people lost to 9/11, but right now I cannot because I am in dire straits and have been for 11 years. The only thing I can do is honor them and pray for the people lost in 9/11.  Consequently, my whole personality and outlook changed forever after TBI and after 9/11.  I am still, in 2012, dealing with the physical and emotional upheaval. And yet I am not defeated

What are the main strategies you use to surmount challenges to live life as a brain injury survivor today? 
I ‘ve decided to try to surround myself with people who have displayed empathy, positive attitude and intelligence and who desire to want to learn about TBI.  I try to practice my Native American tradition and to remember the Bible in terms of being able to walk humbly and smile when people make insensitive remarks. Then again there are those negative forces which brings my confidence down low so I proceed to act in part.  
An illustration: People will make insensitive remarks like: “you don’t look like you’re brain injured because you don’t fit the profile.”  So I fire back with a response because I become enraged.   “So Einstein, what is your precise definition of what a brain injured person ought to look like?”  I receive responses which range from a blank stare to a defensive attitude.  But I should be the better person when inane statements are made and approach the situation more like my great grand uncle the Medicine Man and smile and say “have a good day”.

Indeed, there’s a moment where an unexpected event will occur in which the person experiencing that event will know the character of the people who surround him, be it encouraging or discouraging. Either way, a lesson is learned.
An example: There is a person I knew since I was 11 years old.  He was my teacher.  When I graduated with a degree in biology we became friends. I want to thank him very much for helping me when I needed it after my brain injury. He had access to give me medical and legal information at that time because I did not have a computer and he did.  I was very confused trying to understand and navigate. The only problem was he never wanted to learn about TBI and what people go through. I felt like it’s his loss because he could have imparted valuable information to co-workers, colleagues and students about TBI.  He could have been instrumental in that regard but he decided he did not want to. In 2010 I had a near death experience at the hospital. A few months after that he gave me a religious gift.  Being of Native American heritage, and my family built a Church in the 1870’s that gift was significant to me and he knew that.   I thought the gift was to help uplift me after my discharge from the hospital a few months back. Instead he proceeded in asking me questions about