LOS ANGELES,CA USA
“Falling Between the Cracks”
"Sharing our story to bring "Awareness" of the Long Term realities of "Life Post TBI/ABI or any other Neurological Disorders and its IMPACT on the Survivor and their Families, particularly to those families that dealt with domestic violence prior to the trauma of TBI/ABI or any Neurological Disorders of one of their offspring." Pearl,M.S.
A true-life experience of two women, Janice “Blu” age 32 my daughter, permanently disabled with Traumatic Brain Injuries (TBI) due to a car accident at age 27 on 12/4/97; and myself "Pearl,M.S." a story of whose life was controlled by an abusive spouse for 29 years out of a 34 year marriage. I became a 24/7 caregiver as of 5/13/98 to Janice "Blu".
I escaped domestic violence at 3:00 p.m. Wednesday, 2/19/03. In numbness and in shock after escaping a beating, I was out in the driveway with my daughter in her wheelchair, when I realized that this time I would never return again to my abuser. It was the turning point when I had to draw upon all my survival skills learned under mental bondage. There was nowhere to go but to the sheriff’s station, one that over the years came to know our address well, due to the domestic violence calls. I would leave, but always came back to my husband because of my children.
We arrived at the sheriff’s station, just wanting to feel safe. I sat at the station knowing that I finally ended a life of abuse. But all I could think about was "What now? What am I going to do?" The medication bag I had always had behind my daughter’s wheelchair was left behind in our bedroom. The relief of escaping another beating suddenly became nullified when I realized this was a path I had walked before when I tried to leave my abuser. With only $20 to my name, I dug into my purse to find quarters to call someone to help me. I called my doctor who had been working with me to plan to leave this abusive relationship of 34 years. At the sheriff’s office I was provided with several telephone numbers for domestic violence shelters.
I called my doctor's office and left the stations pay phone number for her to call back. It was through my doctor that she contacted a tbi advocate, as I had used up all the coin change on one call.
I found shelter for the night 2/19/03 for my disabled adult daughter, and myself through my friend Loislynn, an advocate on behalf of TBI (truamatic brain injury) as she for years provide her home to others that became homeless due to TBI as she had known of us from a previous attempt to leave my abuser on the year 2000 when we met her.
My daughter and I traveled about 100 miles from the sheriff’s station to the advocates’ home, arriving at about 9:45 p.m.
The following morning, I began at 8:00 a.m. calling the domestic violence shelters. We called many places with no success. I knew from previous attempts to leave my abusive relationship, it was a mute point to explain to the domestic violence shelter’s intake person on the phone how critical it was for Janice and I to be together due to the many issues of TBI and as environmental changes at times even in their own room, for some TBI survivors, changes cause seizures as it does my daughter.
The domestic violence shelters I called would not take my disabled daughter due to insurance liabilities, as she was not the one being abused, so I was informed. Their option to me was to place my daughter in a nursing facility then go to the shelter. As anyone with healthcare experience knows, at 6p.m. from the sheriff’s office it is near to impossible to find a doctor to issue an order to have someone placed in a home, in a addition to that, finding a facility that had room is another issues. It is not feasible to accomplish such a suggestion at the time of crisis, as this process cannot be implemented in a few minutes or hours.
Several facts became apparent:
* The current system established for those who are abused and are seeking relief
does not accommodate special needs, not in our case.
* I did not qualify for any relief because I owned a car. This is the very tool that helped me escape time and time again. The asset of a 1988 car I own, dissqualified me from any state aid which I sought only until I was able to get back on my feet.
Finally I recalled a woman I met at a Los Angeles City meeting about disabilities through my networking and advocacy on behalf of my daughter’s TBI. I did not have her name, but I remembered her company, Info-Line she was a producer. Despite my mentioning this contact, I was no more than one of the many calls they receive.
If nothing else, I am persistent and I don’t give up so I kept calling InfoLine. At 3:00 p.m., I finally reached a woman "Linda" whose heart opened to my daughter’s special needs and mine. She told me to call back at 6:00. She said she would exhaust all her resources to find us a place to go to. She located a shelter in Sylmar. We were close to West Hills so that seemed workable. I asked if there was some type of separation between women and men as my daughter is incontinent and has to be changed often. The reply was that everyone slept in an open area so that was not safe.
* The woman pleaded with the gentleman on the 3-way phone conversation and asked if he knew of any shelter that could help both my daughter and I. He put us on hold and then gave us a number to call in the San Gabriel Valley, the very area where I had lived for over 30 years and had just left hours before from the sheriff's station. Thus we began our trip back from the Ventura/Los Angeles County boundary, to the City of Industry towards opposite San Gabriel Valley.
* It took 29 hours to find a homeless shelter that would take both of us without being separated since the time I fled my abuser. My daughter requires 24/7 care and is incontinent, so privacy and safety were major concerns to me on her behalf.
* I had never experienced a homeless shelter. I had read about them in the newspapers and seen them on television. In fear, I did what I had to do. When we arrived at 10:30 p.m., on Thursday 3/20/03, everyone was already in their cots. Faces…so many faces, some with their eyes on us and probably wondering why we were there, especially someone in a wheelchair. But it was out of the cold and it was a place where my daughter could stretch her legs. She cannot stand or walk on her own because of balancing and cognitive issues. That Thursday night, February 20th, began our experience with the reality I already knew so well of:
"FALLING BETWEEN THE CRACKS".
* At the homeless shelter, the next morning I went to the medical facility that had a representative the night we arrived at the shelter, and thus the beginning of attempting to get the necessary medication for my daughter. The seizure medications were classified as “very expensive” and the medical facility I contacted did not or could not obtain them. The facility had on hand some of the medications not all the ones my daughter was taking and from past experiences in ER rooms, I had learned not to take such chances and would require me to keep on relying on her neurologist who sincerely cared and was always willing to help us from the USC University Hospital Neurological Department. Why did I not accept the medications on hand to supplement the ones my daughter was already taking at the facility I was referred to?
* Any change in medications with TBI can be very serious, could even cause severe gran mal seizures or be fatal. Why? The body has to get used to medications over a period of time, sometimes 2 to 3 months. Increases or changes are done in a gradual process within weeks in small dosage increases so it takes 2-3 months for the body to absorb such changes and have effect on the body.
As we had back in the year 2000 experienced a sudden change of medications at an ER facility (Vam Nuys,CA, a privately owned ER Hospital) whose attending ER doctors did not respect my knowledge of dealing with TBI and my daughter's history of medications and seizures, they went ahead without my approval despite repeated pleads not to give her dilantin at high dosages, as they had just prescribed and injected to her as she was having a Gran Mal, 800 mgs of Dilantin , a dosage that she had never taken before, that sent my daughter back to a coma.
So I was not going to repeat that scenario again not as a caregiver and a mother of my TBI daughter. So after explaining to the kind and caring doctor at the medical facility whose representative had referred me to at the Homeless shelter, the Doctor provided the some needed meds on hand for several days and I assured him I would contact her neurologist as he suggested and I did just so.
* Shelter life meant getting up at 5:00 a.m. in order to leave the shelter by 7:00. It meant staying in the car in parks where we went first thing in the morning. We waited for the libraries to open. We had to plan each day, as we had to be near a facility where it would be possible to change my daughter. Often she would wet through her pants and even her T-shirt would become wet. That meant rinsing and soaping in bathrooms whether at the library, in court, or parks. This period from February 20 to March 13 was an experience I will never forget. My daughter could not lie down to relieve pressure on her body. Her left leg has plates, nut and bolts so her discomfort was incredible and her ankles began to swell.. She was in pain from sitting for such long periods until we could get back to the shelter when it opened again at 6:00 p.m. and we were able to get to the cots after dinner. I knew I had to find a place to live.
* The Director,A.L., of the Winter Homeless Shelter, told me that the shelter was closing, but he felt he could help us. He would address our needs to the Transitional House Board of a ESV Coalition for the Homeless.
"A need...A moment in time...Kindness from a stranger."
A vacancy in the Transitional Home was available, just as the Winter Shelter was closing and it was offered to my daughter and I on March 13th as the Winter Shelter closes on March 15th. Their program to help a family get back on their feet provided not only shelter, but a place where my daughter could bathe and rest in her hospital bed in a quiet haven.
For me to feel safe and away from my abuser of 29 years was a key factor that empowered me to proceed to end this relationship of physical, emotional, mental and sexual abuse. I was able to focus on the priorities, plan the series of court appearances and not worry about where we would go the next day, or be concerned about my daughter’s physical discomforts.
Some of the immediate problems were:
* I had been informed by the local pharmacy that the medications had just been
issued on February 1st and Medical would not pay again so they could not give me another full dosage. My daughter takes several medications, Neurontin in two separate dosages, kepra, remidyl and celexa. I pleaded with them, but to no avail.
* Continued calls to her neurologist got us enough samples to last for another 12
Days until March 1st when we would be eligible for Medical again. In desperation I had called my teenage daughter and asked her to find the medication bag left behind. I was told they did not know where it was and that I had 7 days as of 2/19/03 to get the trash bags containing our belongings that had been thrown outside near the trash. If I did not pick them up, they were going to be picked as trash or go to the needy family across the street.
* Wednesday, March 7th, I went to the Pomona Court to file a restraining order
to stop this man from throwing our personal belongings in the trash. I went to serve him the TRO and found three huge trash bins were already full with bags containing our belongings. I could not go through them. My life was more valuable to me, yet tragically; the work of years was tossed into the trash. This included my writings, my backup to our artworks, stories I created, over 300 diskettes and individual pages for my website for Artists with Brain Injuries…all gone. It was just the beginning of the pain in my heart.
* To flee this time meant leaving my 14-year-old son and 17-year-old daughter. That sacrifice was the hardest I have ever made. I will never get over it. They have their entire lives witnessed the verbal and emotional abuse their father has imposed on me and all I can hope for now is that they will remember and that they will never repeat this deadly cycle. That thought consoles me when I grieve their loss. They chose to stay in the comforts of a lifestyle their father is able to provide.
* Wednesday, with the TRO in hand, I went with an escort to try to recover what I could put in our station wagon. With the wheelchair there was hardly any room. This meant that in the following weeks, I had to make many more escorted trips back to the house.
Court documents to process, court appearnance along with decisions, challenges and limited options are only a few of the issues that I had to face daily. I knew I had to resolve these despite the traumas. I began the process of utilizing the legal programs to assist the victims of domestic abuse.
As of February 26, 2003, I began the process of finalizing my divorce as it had come to a halt upon my daughter’s car accident back on 12-4-97. My original filing was on March 21, 1997.
Due to my complicated case, I have spent many hours processing all the needed paperwork with the court programs to help victims, utilizing TRO’s, (temporary restraining orders) and Dissolution of Marriage, with help from the clinic and also family law programs. I have filled them out mainly by myself because I have become so familiar with the process.
Court appearances start at 8:30 a.m. We have spent countless days there until 5:00 P.M.. Each long day of changing my daughter’s diapers, feeding and giving her medication only to come home to seizures for the rest of the evening because of the stress. This meant no sleep for me. At times I suffer from sleep apnea due to neurological damage from untreated hypertension. Often we had to return the next day for another long 8-hour session in court. This has been the story for over two months from 2/26 to yesterday, 5/1 when I submitted my final judgment. I have another court date on 6/5 as the spouse defaulted.
We had to pay $6 for parking each day at court. We had to travel, wheelchair and all, from the 7th floor where the dissolution clinic is, down to the clerk’s office on the 1st floor for forms, then the Family Law office on the 1st floor. In addition there was the constant trial of trying to piece together the different points of law, review the documents, trying to catch incorrect information and fighting the system which told me “We can’t tell you what to do”. I didn’t want to be told what to do, I just simply needed to know what forms were needed, if I had to serve papers or not, and what were the ramifications of my choices.
There was a critical need to fill in all the gaps after so long a time. No one informed me that serving my husband with a notice was a matter to be continued at another court hearing. This was set for 5/1/03. My divorce could have been final as of that date, but as my spouse was not properly served a simple form and procedure, the hearing was postponed to 6/5/03. Another month of waiting.
The challenges and the tiresome days have finally come to the point where there is hope for an ending. There has been a tremendous cost paid in pain and heartache, but the hope that there will be an end to the struggle for freedom from abuse makes it worthwhile. It would not have been possible were it not for the Winter Homeless Shelter, its Director, the ESV Coalition for the Homeless in City of Industry,CA and their President I.K..
Theirs was the only shelter that accepted us. Their Transitional House gave us a safe haven to rest and regroup. Together we worked on a permanent residence that was remodeled by a private individual at his own expense to accommodate my daughter's disabled needs our friend whose heart reaches out to the homeless as we once were.
It has become a reality to have a home where I am able to pay rent and slowly get back on my feet.
My disabled 32-year old daughter and I, although grieving at not being with my two teenage children, are looking forward.
Although there are tears of sadness in my heart, somehow tears now are of courage and hope that one day, my younger daughter and son will not fall into any relationship that will cause the vicious cycle of domestic violence. I hope the cycle was broken when I left and it may be the key to their survival to live life for the first time as it was meant to b.....warm and safe in a home, not a war zone.
"Falling Between the Cracks"
yet survived for the sake of my children with the help of strangers and above all, faith in the Creator of the Universe, whose purpose for a man or woman was not to suffer at the hands of abusers.
Survival now is to relearn and instill deep in my heart and mind the ability to set boundaries that can protect me from any controlling individual that attempts to chain my soul into the dungeons of darkness in any type of mental bondage or attempt to abuse me be it verbally, emotionally, mentally or physically.
Awareness.....Advocacy.....Understanding the lives of those that experience Domestic violence and the Tools that help individuals to help themselves is an acknowledgement of the Precious Gift of Life our Creator provided for all mankind.
M.Sanchez aka “Pearl,M.S.
Revision 8/03/03
All Rights Reserved.
Duplications of any portion must be by written consent for Advocacy purposes only .
Copyright 1997-2003 Pearl, M.S.
Graphic by "Sylvie" UK. All Rights Reserved.
Copyright: 1997-2003 Pearl,M.S.