PLEASE, Help Me Beat Homelessness
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Please Help! Down to the wire! Jan 30th--if I am not closer to goal may have to forfeit a handicapped accessible home and I will be homeless. $5, $1--it adds up so quickly--as Bernie Sanders proved :) ! Bless you all. <3
Here is an update since the original post of "My Story", which follows below and explains in detail the horrible place I find myself, and the series of life-crushing events which led me here.
The news? Something good "could" be happening, but I still need the help of you "angels on earth" if I am going to make it a reality. I have a chance for an affordable, beautiful, handicapped accessible apartment. It will not only meet my present needs, but will continue to serve my needs as my disease/disorder progresses and, if prognoses are correct, lead to life in a wheelchair someday. That is just my reality--I can deal with anything, if I know what it is. Staying where I am is not an option because it costs more than I make. So it is either this new place now, or being homeless until something else comes along--the possibilty of which is grim anytime in the near future.
Me sitting in what I hope and pray will be my new apartment. Isn't it nice? The wide open space makes getting around very easy. It is a prototype--a study using solar power and top of the line energy efficiency. I love being a tiny part of a green future. Since it is a study, the rent is conceniently low, as I am one of the guinia pigs testing the system and reporting on the progress. Solar powered washer and dryer in the unit, which is a blessing for me--going to a laundromat is a nightmare. Wide doorways, wide halls, and easy access. It would be perfect--if I can make it work, with your gracious help.
The problem is, I have to pay rent on both apartments for one month ($2275!), since the new apartment is ready now and they cannot wait, and this apartment requires a notice per the lease. This fact changes my whole financial situation and plan. If I do not get closer to my goal, I will not be able to cover this unforeseen additional expense. The costs of moving are already challenging to meet, but this additional burden is even more so. Staying here is NOT an option, since the rent alone is over $300 more than I make each month. I have been stuck here far longer than I anticipated--and all of my resources are depleated. I have been searching for housing 7 days a week, 12 to 15 hours every day, since the end of October, following the tragic sudden death of my roommate. I just now found a place to live. However, moving there will not be an option if I cannot pay first month and and one month's deposit on 1/30. I also have to fulfill the terms of my lease here and pay another month's rent. I only have until January 30th to get closer to my goal. After that I will lose the new apartment, and will be weeks away from homelessness. I pray to God that does not become my new reality. As of this writing, I am at $4,405 of my $5,000 goal. I need to gain as much of that other $595 as I can by Jan 30th. I am afraid where I will end up if I do not, and how I will function in that reality.
It is so hard for me to believe that there was a day, a much better time not so very long ago, when that would have seemed so possible. These days, it seems paralyzingly impossible. It feels like it might as well be $2,000,000! If I do not have enough to pay the required amounts on 1/30, I will be facing imminent homelessness. I actually spoke with the director of the local homeless shelter, and she said that my ability to exist in those conditions with my disability would be very difficult and even unsafe. I am terrified I might be forced to face it anyway. I still need your help--you "angels on earth" who have been following my story. If you can donate anything, any amount, and/or share my page with as many people as possible, it would help me achieve my dream--to be able to afford to survive on my own and, after some time getting back on my feet, have at least a small ability to give and help others in need--something I have always done and have missed being able to do. Giving to others gives me so much joy. In my life I have given 10s of thousands of dollars to hundreds of charitable causes. Even when times for me were lean, I would give my last dollar to someone who needed it more. I attribute that to my beautiful Mom. While she was alive, she was a giver--a true angel to those in need. She used to say, "If you think there is no one out there who has it as hard as you do, just look out the window." Those are words by which I have always tried to live my life. My dream has been to become even half the person she was, and I aim to live my life by her example.
Asking for help, though, makes me very uncomfortable. I have always made my own way, even when money was scarce. I feel like a leech asking for anything for myself. But, if I am going to get from this reality to the one where I am once again safe in a home which is built for my needs, I need to put aside all of my pride and ask for your help. Senator Bernie Sanders proved that so much can be accomplished with small donations. I mean, he had to raise millions of dollars, and most of his donors were only able to send small amounts, because it was all they could afford--and he understood that. During his campaign I would send him $5 or $10 when I was able, as did many who supported him. Every dollar will help, and will be so appreciative I will not even begin to express my gratitude and thanks. I also make this promise to you--any chance I get--I will pay it forward. Every time I do so, I will think of all of you.
I believe in miracles--will you be mine?
Blessings to you all, and may this New Year be filled with the gifts of His promise. Amen.
MY STORY:
I am a 53-year-old man, a recently physically disabled life-long Vermonter, who VERY suddenly finds himself making much less money and being forced into trying to survive on a very small Social Security monthly income. Since I was already living month to month with no reserves, I am sinking deeper and faster every day I remain where I am. I find myself in an emergent housing situation where I cannot afford to stay in my apartment ANY longer, but have no place to go (yet) and no way to afford the costs of moving. Either way my life is presently unsustainable, and either direction leads to my being homeless.
I just can't believe I am in this place in my life. My life just changed so instantly and unexpectedly due to a tragic life event which carried a loss of a beloved family member, and at the same moment a more than 66% drop in my income! It has left me within a month of facing either "voluntary homelessness", or being served eviction papers, which would destroy any chance I would have to get into rent-controlled housing.
"Life's Clock" keeps ticking on when I need it to slow WAY down. It resounds in my ears like a countdown to a joint explosion and implosion of my life. As I watch inches of snow falling outside my window right now, I am both glad I have a window to look out, but am terrified that soon I will be on the other side of it--homeless, disabled, freezing, broke and frightened.
***In the photo attached you can see me with my Mom (who we lost in early 2013), and one of my sweet little buddies I took care of in my home. He was with me for only 8 years (he died in 2002), but I still miss him every single day. We used to spend a week in Wells, ME every summer. My Mom was beautiful inside and out, and one of the most generous, giving, selfless people I've ever known. Whenever we would complain about our lives when we were growing up, she would always say, "If you ever feel there is noone in the world who has it as bad as you, just look out the window." God love her--I have lived my life by those words, and still try to emulate her at every opportunity. This is so hard--asking for help in this way just feels "tacky" to me--but that is totally my issue. To everyone else I would say with no hesitation whatever, "Please ask for help if you ever need it".***
I am in one of the scariest situations I have ever faced in my life, which is a life which has included a six year battle with cancer, multiple complex and dangerous surgeries, critical illnesses landing me in ICU and threatening loss of limb(s), and an undiagnosable degenerative disability at far too young an age. So you can imagine how high my fear factor is at this time.
Allow me to explain how my life became so derailed, and how the runwaway train delivered me to such a devastating reality:
I spent my early years working in nursing, in specialties ranging from geriatric care to pediatric hospice. Those last years working with terminally ill children and their families/friends was the most rewarding work I have ever done--and the most emotionally draining. I decided I needed to try a different path, at least for a while. For the past 25 years, I served as a shared living provider for seniors with developmental disabilities in my home, not that I was limiting myself to seniors, it just worked out that way. In 1996, I had two gentlemen living with me, the same age, similar interests--real "brothers". So I did not need to work outside the home, and for the first time in my life, did not need to work two jobs just to survive. I was able to dedicate every moment to making their lives as wonderful as they could be. Though I was on duty 24/7, it was not work--it was "sharing a home, our lives, and lots of love". We had a great time as a family <3 I just loved those little nuggets! In 25 years I never took a vacation without taking them with me--why should I have fun alone when we could all have fun together?
(Me with my 2 boys and friend @ Universal Studios, FL)
After eight wonderful years together, the first of my dear gentleman died in 2002, due to an aggressive metastatic pancreatic cancer. He left us as I held him in my arms, rocking and singing to him. I had to not only deal with the deep grief from his death, but the realization that my income had been cut in half at the same time.
However, I was left with the care of the very independent little fellow still living with me. I discussed the options with him—to either try to find another compatible person to live with us, or to have me go back to working outside the home Monday through Friday. He preferred not to bring in another person, risking disruption of our peaceful home, and preferred it be just the two of us. I think he also liked the idea of having all of "Dad's" attention to himself :-) . Since he had a part-time job during the week, he was home alone just a few hours while I was working, and we had our evenings, weekends and vacations together. So, to make up the lost income, I went back to work in my previous field of nursing at what is now called UVM Medical Center Outpatient Cardiology, where I worked for 11 wonderful years.
In 2009 I began having some bizarre, very troubling physical symptoms. I started falling frequently due to constant vertigo, constant ringing in my ears, weakness anf fatigue, dizzyness and loss of balance. In one year I lost over 100 pounds inexplicably--I had changed nothing in my diet or activity level. I rapidly lost muscle mass, and scans showed deterioration of my bones, especially at all of my long bones and major joints. I was having numbness and loss of function in my extremities, and a lot of trouble with fine motor control. I was also in constant, chronic pain, which made everything more diificult.
Over the next four years these symptoms progressed to the point where, in 2013, they became debilitating. By that time I had gone from walking with one cane, to using two canes, to being unable to walk without the aid of a Rollator walker. I was forced to leave my job, which I truly loved, and was also forced to give up the thing which had been my greatest joy since the age of 6--community theatre. That loss was huge, because I couldn't remember a time when I was not involved in 3 to 5 productions a year.
(Bad photo of me in a great role: 'Fagin' in "Oliver")
It also left us in a significant financial crisis which I needed to address. After an 11 month unsuccessful battle between my doctors and the disability insurance I had through work, and no income except for my stipend for caring for my housemate, I reluctantly applied for Social Security Disability at the urging of my vast medical team of general MDs and specialists. They told me I would probably never be able to return to work—a reality I was not ready to accept. I kept praying for a medical miracle (and still am). When the Social Security came through (with the first filing, after 5 rejections from my work insurance...?) it did not even come close to what I was making in nursing--in fact, it was a little less than half. Never daunted before, we had to tighten our belts, do away with the “extras”, organize, plan and search for bargains. We made out fine, but it was month to month survival.
As for my medical issues, we have now spent eight years trying to diagnose whatever it is that has decided to attack my body. We have been unsuccessful. I have had every blood test imaginable; spent multiple hours in imaging machines; had EEG's and nerve conduction testing, had tissue, muscle, fluid, bone and bone marrow biopsies; had several lumbar punctures (spinal taps); had extensive neurological testing; and tried physical and occupational therapies. My doctors sent my information and samples to the other top medical centers in the country, and continue to network online trying to find another MD who has experienced a similar case. One MD replied that he had a patient with similar symptoms, and if we find out what it is, could we let him know!
The current theory is that I have a very rare, as-yet-unnamed, degenerative disease/disorder. It continues its attack on my muscular, skeletal, and neurological systems. It has left me unable to walk independently; with bone deterioration, occasional spontaneous fractures of small bones and bone pain; extreme muscle waste and cramping; and bizarre neurological “misfires” which cause loss of fine motor control, spasms caused by what feel like electrical shocks, and loss of feeling in my extremities. I also have constant vertigo, ringing in my ears, and loss of balance, and if I did not have my walker with me at all times, I would be falling daily--I come close all the time. Thank you, Rollator! Most recently I have been having vision changes, with frequent double or blurry vision and "floaters" in my right eye. I swatted at more non-existant fruitflies before figured out what they were ;)
Since the gentleman I still had living with me was capable of getting around and being somewhat independent in many areas, I continued to be able to offer him the level of care and assistance he needed. However, as he was growing older and starting to show his age, and my condition was declining, I was afraid there might come a day when I would no longer be able to care for him sufficiently. It was a concern which led me to start looking at options for the future, though I did not want to make any change until it was absolutely necessary.
However, before any of those concerns could be realized, my sweet little buddy, one of the healthiest 76-year-old men I have ever known, died suddenly and unexpectedly on October 24. This was the moment when my life became "derailed". He also left us as I held his hand and sang his favorite song into his ear, "O Holy Night".
(My "Little Ray of Sunshine", Ricardo. I miss him so <3)
(My "Little Nugget" Ricardo Loved Christmas! Here he is, having just helped decorate our friend's tree. <3)
Lost in deep grief, it took me a few days to realize that, in his final breath, I not only lost a member of my family, my second son, but my income dropped by more than 66%. I was now going to have to survive on just my Social Security--an income of just $1,174 a month! How? Where? The cost of living in Chittenden County, Vermont is outrageous. Finding any affordable and accessible living option is nearly impossible. Waiting lists for any type of housing assistance are years long.
I wanted to try to fulfill a desire I have been considering for some time—moving back to Addison County, preferably to my beloved home town, Bristol, and be closer to most of my family and life-long friends. The rents are more reasonable in Addison County, but far fewer rental options exist, so I am not sure that is a realistic dream. My exhaustive search has covered an area from Rutland County to Chittenden County. With my family in Addison County and my entire medical team in Chittenden County, I do not want to be any further away from those two sources of support, which I am reliant on in many ways, and will undoubtedly rely on more as time passes.
We moved to the apartment in which I currently reside three years ago. It was more expensive than I wanted--$1500 per month for an accessible two bedrooms. two bath unit. We made the move because we had both reached a point where we required a handicapped accessible apartment, since we each had our own mobility limitations. For the two of us to live here, in exchange for ease of living, we had to tighten our belts even more. I think having been involved in community theatre for 42 years taught me how to stretch a dollar as far as it will go, and I have needed to employ those skills every day. Again, somehow, we got by.
With my little buddy’s passing, though, I am now left alone in an apartment I cannot even begin to afford. Just the rent here is $326 more than I take in each month. I can only survive here through the end of December, then all my resources will be gone and I will either have to move into my van (not an option) or be served with eviction and end up homeless. Disabled and homeless in a Vermont winter. Nobody should ever have to face that reality. I don’t think I have ever been so scared.
With my accessibility needs and my physical/health issues, homelessness is not an attractive option. In my "new full-time job" of searching for housing I have met with many obstacles. It seems like every apartment option has been either too expensive or not accessible for me—many of those listings being on the second floor or in a basement apartment. I can access neither of those.
Since the end of October I have been involved in that search up to 15 hours a day, 7 days a week, searching online; making calls; sending emails, faxes, mailings; filling out numerous multi-paged applications; and going to view apartments. It has been exhausting, stressful, and increasingly depressing. It just seems like roadblocks lay at every juncture. I just cannot seem to find anything I can afford without some kind of subsidy. $1,177 per month does not go far, especially when you have a bundled car payment/insurance at $265 each month (on a 10-yr-old minivan which will probably die before it is ever paid for) and other expenses like utilities, medications and medical equipment, and other living needs. Since I still have not found a place and am still stuck here, I am not even exactly sure if I will be able to pay the full rent in January, but I am working on that issue. Even if I can, that will leave me devoid of resources. I am frightened beyond words.
This unforeseen and devastating reversal of fortune has been a hard hit in so many ways. It is so disheartnening to reaize how your life can be so horribly altered in a single moment. It can break your spirit, and strip away your sense of self, your sense of worth, and your sense of pride. I have no idea how much everything is going to cost by the time I get moved and settled or whether or not I will even be able to make that happen.
I have had rough times before in my life, but I have always been strong, capable, creative, frugal and resourceful--so I figured it out and got by until things improved. I would bear those times, because asking for help, and even receiving help, is something I have never done well, and have vehemently avoided most of my life. I don't even ask for help from friends or family when I really need it. In the past 3 years I have been forced into situations where I had no option but to accept help, which has been so challenging for me. I like to be self-sufficient. I like to feel like I am in control. With my "undiagnosable" disability I am no longer strong, less capable, still creative, frugal and resourceful in mind, but not in body, which is often very difficult to accept. Still, I hate asking for anything. I am much more comfortable with 'giving' than 'receiving'. If I have anything you need, even if I might need it myself, I will give it to you without hesitation or regret.
Yet here I am, doing what I never thought I would do--asking for your help. Every heartfelt donation, every dollar, every penny is and will be so incredibly appreciated, and used in a purpose which will leave me with an affordable home that allows me to live for years to come--hopefully one that can allow for my increasing needs so I will never have to move again. I will most likely end up in a wheelchair , so an apartment designed for that could be my final home--my last move.
Every donation has been and will be a true, God-sent gift. Every "share" has been like another star in the dark sky, leading me on and keeping me going. Every kind message and words of encouragement spur me on and give me comfort. You are all Angels On Earth. With your help, I can get through this. With your generousity and love, we will make it happen as a team.
Bless you all <3
Brett
(The 'Me' most people know today...)
Here is an update since the original post of "My Story", which follows below and explains in detail the horrible place I find myself, and the series of life-crushing events which led me here.
The news? Something good "could" be happening, but I still need the help of you "angels on earth" if I am going to make it a reality. I have a chance for an affordable, beautiful, handicapped accessible apartment. It will not only meet my present needs, but will continue to serve my needs as my disease/disorder progresses and, if prognoses are correct, lead to life in a wheelchair someday. That is just my reality--I can deal with anything, if I know what it is. Staying where I am is not an option because it costs more than I make. So it is either this new place now, or being homeless until something else comes along--the possibilty of which is grim anytime in the near future.
Me sitting in what I hope and pray will be my new apartment. Isn't it nice? The wide open space makes getting around very easy. It is a prototype--a study using solar power and top of the line energy efficiency. I love being a tiny part of a green future. Since it is a study, the rent is conceniently low, as I am one of the guinia pigs testing the system and reporting on the progress. Solar powered washer and dryer in the unit, which is a blessing for me--going to a laundromat is a nightmare. Wide doorways, wide halls, and easy access. It would be perfect--if I can make it work, with your gracious help.The problem is, I have to pay rent on both apartments for one month ($2275!), since the new apartment is ready now and they cannot wait, and this apartment requires a notice per the lease. This fact changes my whole financial situation and plan. If I do not get closer to my goal, I will not be able to cover this unforeseen additional expense. The costs of moving are already challenging to meet, but this additional burden is even more so. Staying here is NOT an option, since the rent alone is over $300 more than I make each month. I have been stuck here far longer than I anticipated--and all of my resources are depleated. I have been searching for housing 7 days a week, 12 to 15 hours every day, since the end of October, following the tragic sudden death of my roommate. I just now found a place to live. However, moving there will not be an option if I cannot pay first month and and one month's deposit on 1/30. I also have to fulfill the terms of my lease here and pay another month's rent. I only have until January 30th to get closer to my goal. After that I will lose the new apartment, and will be weeks away from homelessness. I pray to God that does not become my new reality. As of this writing, I am at $4,405 of my $5,000 goal. I need to gain as much of that other $595 as I can by Jan 30th. I am afraid where I will end up if I do not, and how I will function in that reality.
It is so hard for me to believe that there was a day, a much better time not so very long ago, when that would have seemed so possible. These days, it seems paralyzingly impossible. It feels like it might as well be $2,000,000! If I do not have enough to pay the required amounts on 1/30, I will be facing imminent homelessness. I actually spoke with the director of the local homeless shelter, and she said that my ability to exist in those conditions with my disability would be very difficult and even unsafe. I am terrified I might be forced to face it anyway. I still need your help--you "angels on earth" who have been following my story. If you can donate anything, any amount, and/or share my page with as many people as possible, it would help me achieve my dream--to be able to afford to survive on my own and, after some time getting back on my feet, have at least a small ability to give and help others in need--something I have always done and have missed being able to do. Giving to others gives me so much joy. In my life I have given 10s of thousands of dollars to hundreds of charitable causes. Even when times for me were lean, I would give my last dollar to someone who needed it more. I attribute that to my beautiful Mom. While she was alive, she was a giver--a true angel to those in need. She used to say, "If you think there is no one out there who has it as hard as you do, just look out the window." Those are words by which I have always tried to live my life. My dream has been to become even half the person she was, and I aim to live my life by her example.
Asking for help, though, makes me very uncomfortable. I have always made my own way, even when money was scarce. I feel like a leech asking for anything for myself. But, if I am going to get from this reality to the one where I am once again safe in a home which is built for my needs, I need to put aside all of my pride and ask for your help. Senator Bernie Sanders proved that so much can be accomplished with small donations. I mean, he had to raise millions of dollars, and most of his donors were only able to send small amounts, because it was all they could afford--and he understood that. During his campaign I would send him $5 or $10 when I was able, as did many who supported him. Every dollar will help, and will be so appreciative I will not even begin to express my gratitude and thanks. I also make this promise to you--any chance I get--I will pay it forward. Every time I do so, I will think of all of you.
I believe in miracles--will you be mine?
Blessings to you all, and may this New Year be filled with the gifts of His promise. Amen.
MY STORY:
I am a 53-year-old man, a recently physically disabled life-long Vermonter, who VERY suddenly finds himself making much less money and being forced into trying to survive on a very small Social Security monthly income. Since I was already living month to month with no reserves, I am sinking deeper and faster every day I remain where I am. I find myself in an emergent housing situation where I cannot afford to stay in my apartment ANY longer, but have no place to go (yet) and no way to afford the costs of moving. Either way my life is presently unsustainable, and either direction leads to my being homeless.
I just can't believe I am in this place in my life. My life just changed so instantly and unexpectedly due to a tragic life event which carried a loss of a beloved family member, and at the same moment a more than 66% drop in my income! It has left me within a month of facing either "voluntary homelessness", or being served eviction papers, which would destroy any chance I would have to get into rent-controlled housing.
"Life's Clock" keeps ticking on when I need it to slow WAY down. It resounds in my ears like a countdown to a joint explosion and implosion of my life. As I watch inches of snow falling outside my window right now, I am both glad I have a window to look out, but am terrified that soon I will be on the other side of it--homeless, disabled, freezing, broke and frightened.
***In the photo attached you can see me with my Mom (who we lost in early 2013), and one of my sweet little buddies I took care of in my home. He was with me for only 8 years (he died in 2002), but I still miss him every single day. We used to spend a week in Wells, ME every summer. My Mom was beautiful inside and out, and one of the most generous, giving, selfless people I've ever known. Whenever we would complain about our lives when we were growing up, she would always say, "If you ever feel there is noone in the world who has it as bad as you, just look out the window." God love her--I have lived my life by those words, and still try to emulate her at every opportunity. This is so hard--asking for help in this way just feels "tacky" to me--but that is totally my issue. To everyone else I would say with no hesitation whatever, "Please ask for help if you ever need it".***
I am in one of the scariest situations I have ever faced in my life, which is a life which has included a six year battle with cancer, multiple complex and dangerous surgeries, critical illnesses landing me in ICU and threatening loss of limb(s), and an undiagnosable degenerative disability at far too young an age. So you can imagine how high my fear factor is at this time.
Allow me to explain how my life became so derailed, and how the runwaway train delivered me to such a devastating reality:
I spent my early years working in nursing, in specialties ranging from geriatric care to pediatric hospice. Those last years working with terminally ill children and their families/friends was the most rewarding work I have ever done--and the most emotionally draining. I decided I needed to try a different path, at least for a while. For the past 25 years, I served as a shared living provider for seniors with developmental disabilities in my home, not that I was limiting myself to seniors, it just worked out that way. In 1996, I had two gentlemen living with me, the same age, similar interests--real "brothers". So I did not need to work outside the home, and for the first time in my life, did not need to work two jobs just to survive. I was able to dedicate every moment to making their lives as wonderful as they could be. Though I was on duty 24/7, it was not work--it was "sharing a home, our lives, and lots of love". We had a great time as a family <3 I just loved those little nuggets! In 25 years I never took a vacation without taking them with me--why should I have fun alone when we could all have fun together?
(Me with my 2 boys and friend @ Universal Studios, FL)After eight wonderful years together, the first of my dear gentleman died in 2002, due to an aggressive metastatic pancreatic cancer. He left us as I held him in my arms, rocking and singing to him. I had to not only deal with the deep grief from his death, but the realization that my income had been cut in half at the same time.
However, I was left with the care of the very independent little fellow still living with me. I discussed the options with him—to either try to find another compatible person to live with us, or to have me go back to working outside the home Monday through Friday. He preferred not to bring in another person, risking disruption of our peaceful home, and preferred it be just the two of us. I think he also liked the idea of having all of "Dad's" attention to himself :-) . Since he had a part-time job during the week, he was home alone just a few hours while I was working, and we had our evenings, weekends and vacations together. So, to make up the lost income, I went back to work in my previous field of nursing at what is now called UVM Medical Center Outpatient Cardiology, where I worked for 11 wonderful years.
In 2009 I began having some bizarre, very troubling physical symptoms. I started falling frequently due to constant vertigo, constant ringing in my ears, weakness anf fatigue, dizzyness and loss of balance. In one year I lost over 100 pounds inexplicably--I had changed nothing in my diet or activity level. I rapidly lost muscle mass, and scans showed deterioration of my bones, especially at all of my long bones and major joints. I was having numbness and loss of function in my extremities, and a lot of trouble with fine motor control. I was also in constant, chronic pain, which made everything more diificult.
Over the next four years these symptoms progressed to the point where, in 2013, they became debilitating. By that time I had gone from walking with one cane, to using two canes, to being unable to walk without the aid of a Rollator walker. I was forced to leave my job, which I truly loved, and was also forced to give up the thing which had been my greatest joy since the age of 6--community theatre. That loss was huge, because I couldn't remember a time when I was not involved in 3 to 5 productions a year.
(Bad photo of me in a great role: 'Fagin' in "Oliver")
It also left us in a significant financial crisis which I needed to address. After an 11 month unsuccessful battle between my doctors and the disability insurance I had through work, and no income except for my stipend for caring for my housemate, I reluctantly applied for Social Security Disability at the urging of my vast medical team of general MDs and specialists. They told me I would probably never be able to return to work—a reality I was not ready to accept. I kept praying for a medical miracle (and still am). When the Social Security came through (with the first filing, after 5 rejections from my work insurance...?) it did not even come close to what I was making in nursing--in fact, it was a little less than half. Never daunted before, we had to tighten our belts, do away with the “extras”, organize, plan and search for bargains. We made out fine, but it was month to month survival.
As for my medical issues, we have now spent eight years trying to diagnose whatever it is that has decided to attack my body. We have been unsuccessful. I have had every blood test imaginable; spent multiple hours in imaging machines; had EEG's and nerve conduction testing, had tissue, muscle, fluid, bone and bone marrow biopsies; had several lumbar punctures (spinal taps); had extensive neurological testing; and tried physical and occupational therapies. My doctors sent my information and samples to the other top medical centers in the country, and continue to network online trying to find another MD who has experienced a similar case. One MD replied that he had a patient with similar symptoms, and if we find out what it is, could we let him know!
The current theory is that I have a very rare, as-yet-unnamed, degenerative disease/disorder. It continues its attack on my muscular, skeletal, and neurological systems. It has left me unable to walk independently; with bone deterioration, occasional spontaneous fractures of small bones and bone pain; extreme muscle waste and cramping; and bizarre neurological “misfires” which cause loss of fine motor control, spasms caused by what feel like electrical shocks, and loss of feeling in my extremities. I also have constant vertigo, ringing in my ears, and loss of balance, and if I did not have my walker with me at all times, I would be falling daily--I come close all the time. Thank you, Rollator! Most recently I have been having vision changes, with frequent double or blurry vision and "floaters" in my right eye. I swatted at more non-existant fruitflies before figured out what they were ;)
Since the gentleman I still had living with me was capable of getting around and being somewhat independent in many areas, I continued to be able to offer him the level of care and assistance he needed. However, as he was growing older and starting to show his age, and my condition was declining, I was afraid there might come a day when I would no longer be able to care for him sufficiently. It was a concern which led me to start looking at options for the future, though I did not want to make any change until it was absolutely necessary.
However, before any of those concerns could be realized, my sweet little buddy, one of the healthiest 76-year-old men I have ever known, died suddenly and unexpectedly on October 24. This was the moment when my life became "derailed". He also left us as I held his hand and sang his favorite song into his ear, "O Holy Night".
(My "Little Ray of Sunshine", Ricardo. I miss him so <3)(My "Little Nugget" Ricardo Loved Christmas! Here he is, having just helped decorate our friend's tree. <3)Lost in deep grief, it took me a few days to realize that, in his final breath, I not only lost a member of my family, my second son, but my income dropped by more than 66%. I was now going to have to survive on just my Social Security--an income of just $1,174 a month! How? Where? The cost of living in Chittenden County, Vermont is outrageous. Finding any affordable and accessible living option is nearly impossible. Waiting lists for any type of housing assistance are years long.
I wanted to try to fulfill a desire I have been considering for some time—moving back to Addison County, preferably to my beloved home town, Bristol, and be closer to most of my family and life-long friends. The rents are more reasonable in Addison County, but far fewer rental options exist, so I am not sure that is a realistic dream. My exhaustive search has covered an area from Rutland County to Chittenden County. With my family in Addison County and my entire medical team in Chittenden County, I do not want to be any further away from those two sources of support, which I am reliant on in many ways, and will undoubtedly rely on more as time passes.
We moved to the apartment in which I currently reside three years ago. It was more expensive than I wanted--$1500 per month for an accessible two bedrooms. two bath unit. We made the move because we had both reached a point where we required a handicapped accessible apartment, since we each had our own mobility limitations. For the two of us to live here, in exchange for ease of living, we had to tighten our belts even more. I think having been involved in community theatre for 42 years taught me how to stretch a dollar as far as it will go, and I have needed to employ those skills every day. Again, somehow, we got by.
With my little buddy’s passing, though, I am now left alone in an apartment I cannot even begin to afford. Just the rent here is $326 more than I take in each month. I can only survive here through the end of December, then all my resources will be gone and I will either have to move into my van (not an option) or be served with eviction and end up homeless. Disabled and homeless in a Vermont winter. Nobody should ever have to face that reality. I don’t think I have ever been so scared.
With my accessibility needs and my physical/health issues, homelessness is not an attractive option. In my "new full-time job" of searching for housing I have met with many obstacles. It seems like every apartment option has been either too expensive or not accessible for me—many of those listings being on the second floor or in a basement apartment. I can access neither of those.
Since the end of October I have been involved in that search up to 15 hours a day, 7 days a week, searching online; making calls; sending emails, faxes, mailings; filling out numerous multi-paged applications; and going to view apartments. It has been exhausting, stressful, and increasingly depressing. It just seems like roadblocks lay at every juncture. I just cannot seem to find anything I can afford without some kind of subsidy. $1,177 per month does not go far, especially when you have a bundled car payment/insurance at $265 each month (on a 10-yr-old minivan which will probably die before it is ever paid for) and other expenses like utilities, medications and medical equipment, and other living needs. Since I still have not found a place and am still stuck here, I am not even exactly sure if I will be able to pay the full rent in January, but I am working on that issue. Even if I can, that will leave me devoid of resources. I am frightened beyond words.
This unforeseen and devastating reversal of fortune has been a hard hit in so many ways. It is so disheartnening to reaize how your life can be so horribly altered in a single moment. It can break your spirit, and strip away your sense of self, your sense of worth, and your sense of pride. I have no idea how much everything is going to cost by the time I get moved and settled or whether or not I will even be able to make that happen.
I have had rough times before in my life, but I have always been strong, capable, creative, frugal and resourceful--so I figured it out and got by until things improved. I would bear those times, because asking for help, and even receiving help, is something I have never done well, and have vehemently avoided most of my life. I don't even ask for help from friends or family when I really need it. In the past 3 years I have been forced into situations where I had no option but to accept help, which has been so challenging for me. I like to be self-sufficient. I like to feel like I am in control. With my "undiagnosable" disability I am no longer strong, less capable, still creative, frugal and resourceful in mind, but not in body, which is often very difficult to accept. Still, I hate asking for anything. I am much more comfortable with 'giving' than 'receiving'. If I have anything you need, even if I might need it myself, I will give it to you without hesitation or regret.
Yet here I am, doing what I never thought I would do--asking for your help. Every heartfelt donation, every dollar, every penny is and will be so incredibly appreciated, and used in a purpose which will leave me with an affordable home that allows me to live for years to come--hopefully one that can allow for my increasing needs so I will never have to move again. I will most likely end up in a wheelchair , so an apartment designed for that could be my final home--my last move.
Every donation has been and will be a true, God-sent gift. Every "share" has been like another star in the dark sky, leading me on and keeping me going. Every kind message and words of encouragement spur me on and give me comfort. You are all Angels On Earth. With your help, I can get through this. With your generousity and love, we will make it happen as a team.
Bless you all <3
Brett
(The 'Me' most people know today...)Organizer
Brett Thompson
Organizer
Essex, VT
