Advice on Going from Survival to Success for the "Instant Generation."



Day 66: Long Shot


Long Shot
The Definition of Anything Successful that has Happened in my Life


So, I did it again… I applied for a government job. I couldn’t resist the temptation when the job suggestion popped up in my e-mail yesterday. It’s a position for a category 203–Human Resources Assistant at the Boston VA Medical Center. When I was recently in Boston on the train; every time I heard the announcement “the last stop of this train is the Boston VA Medical Center,” I couldn’t help but wonder if there was a position open there that I could fit into.

While I was there, I took a quick look on USAJobs, and there was no vacancy open that I qualified for. So, I let the idea drop. I would love to work for the VA Medical Center. I have so many veterans in my family that I am so proud of. This would be a hands-on way for me to serve those who have served. I have worked at the Philadelphia VA Medical Center, and I loved it.  This could be a way for me to fulfill my “Hidden Figures” type calling. People with disabilities need the chance to prove themselves in the mainstream workforce. If I can get in this door; I will be able to open the door for other people with disabilities who are able, qualified and ready to work.

I filled out the KSA’s, attached my Federal Resume and my “Schedule A” letter. I have also contacted the Selective Placement Program Coordinator at the DC VA Medical Center, they were the closest SPPC to Brockport, MA. I will see if he responds and if there is a more direct contact for MA. I’m not “white knuckling” this opportunity. I would love it if it happens but; I feel like it is so unlikely that only God will be able to turn the knob and open this door. I have no control whatsoever. I’m actually quite relaxed.

Day 64: Fear, Ultimatums, New Lenses and Changed Plans


Can't Die with it
Sometimes, House said the Right Things.


I have no intention of this being a political blog. Politics are messy and to write about them every day would wear out my brain. I do have to bring up something that is going on in America’s politics right now because it is scaring me and was messing with what I thought of my future–and even my life.

The “American” Healthcare Act is scaring me. It’s basically saying the twenty-five percent of Americans don’t deserve affordable healthcare. I put “American” in quotes intentionally because this bill is basically saying the twenty-five percent of Americans don’t matter. (FYI according to current statistics twenty-five percent of Americans identify as having a disability–having a disability puts a person in the pre-existing condition category.) The Americans with Disabilities Act was signed in 1990. How much hope the disability community in America had. I doubt that those who fought so hard for it thought that more than a quarter of a century after it was signed people with disabilities would continue to be marginalized. We are given token degrees but kept out of the mainstream workforce. Now, our own Government is pushing for a bill that will prevent us from having access to the medical care we need to live. In the least this will marginalize us further; at the worst, it will kill us.

I have been terrified ever since the House rejoiced when the bill was passed. I talked to a friend that night and said that if the Senate passes this bill, I would rather die then try to live. Already my job insurance and my Medicare premiums are nearly impossible for me to pay. If my premiums go up, I won’t be able to pay them. Not having access to medical care and my medication means I will go back to having fifteen to twenty dystonic episodes again. I will be in constant pain and always exhausted from having the episodes. I won’t be able to work. I won’t be able to take care of myself. I don’t see the point of living like that. I will be turned into a “useless eater.” My friend did the best they could to reassure me that there was no way the bill will make it through the Senate. Tried to assure me that even if it did make it through somehow each state would have the choice to opt in or not, and there was no way my state would opt in. I dropped the ultimatum that night. But, the thought of living with that uncertainty (I don’t have a warning of when I am going to have an episode), living with that kind of pain again, and becoming completely useless made the ultimatum tempting again.

Then, I went to church this morning. I was having a hard time paying attention, but I was doing my best. I did manage to pick up a few things. It was about looking at things with the right schema–the right lenses.  I didn’t take many notes but I did write the following down:

Even the worst circumstances in life become opportunities to experience God’s love.

In other words, even if this bill passes, even if I lose access to health care and medications, even if I can’t work, even if I am pushed aside by society I have to live. Not because I am going to want to at that point, but because God can work through even the worst circumstances to reveal Himself. Dying would be me saying that my life is mine alone and I have the right to live it the way I think is best. Living even if I become a “useless eater” means I trust God can get the glory and show love in any circumstance. In God, I can live with dignity no matter how little value my Government–and the complacent citizens of my country assign to my life.

Day 57: “Selma” Vs. “Hidden Figures.”

Just a forewarning, this post is not a review of either movie; except to say that I thought both of them were fantastic and both of them stirred my spirit; to sadness and hope. I know that some people may not like the equation of the Civil rights movement for African Americans in this country to the Civil rights movement of people with disabilities in this country. You may not feel our battles are the same, but I mean no disrespect to the Civil Rights movement for African Americans. People with disabilities owe you respect and gratitude for paving the way and showing us the many facets necessary in which change can occur.

When I was in Boston I watched “Salema” with my friend who is a fearless, powerful self-advocate and advocate for other people with disabilities. As I watched him throughout the week I became jealous of the way in which he conducted himself. He was fearless in getting people to move so that he could have access to the places he needed. Me, on the other hand, I will push through crowds, but I will try to find an open seat and get in as quickly as possible. Fearful of frustrating or angering people. I watched him powerfully speak before a transportation Board that was considering cutting all paratransit services for people with disabilities. I may be able to speak but not in situations like that. It was annoying me that the people on the Board seemed not to care about the words that were being spoken to them by the many they would be hurting. He simply said, “they have to be that way. They can’t show that any of this is affecting them.” I was amazed and held him in greater esteem even then. He is also part of a disability advocacy group that is not afraid to rock the boat and rock it heavily. while I respect what they do and what they have accomplished on our behalf; I couldn’t do it. After we watched Selma my heart and emotions were twisted inside of me. He then asked me if I would be willing and able to stand by someone willing to go to those kinds of extremes to bring change. It took a bit for me to compose myself, I told him I would want to. I suppose the better answer would have been: “With God’s strength, I could.”

This weekend, I watched “Hidden Figures.” Throughout the whole movie, I was thinking that’s just wrong or yelling “You go!!” I realized that the disability community is at the place these women were. We are highly educated and being completely underused. I look at myself, I have two Master’s degrees, internship and work experience and here I am working as a receptionist. I am working hard to change these circumstances and I have faith that God is at work I just need to trust Him and have patience. One of my Master’s Degrees is in Human Resource Management. My entire reasoning for getting this degree was so that I could either work for the Federal Government or a top-notch corporation and change hiring policies and treatment of employees with disabilites. First, by proving my invaluable worth and work ethic then bringing more qualified individuals with disabilities on board. Being a “hidden figure” of my own so to speak.

Although our ways of wanting to bring about chang for people with disabilities differ tremendously we have a common vision of change. I only hope he is able to stand by someone who would prefer to bring “hidden change.”

Day 33: Independence Again? Civil Service? Figuring out Expenses…

goldfish jumping out of the water
Can I make the jump?

Hello everyone! I hope you are enjoying the preparations for the upcoming holiday celebrations! Can I tell you, I am filled with so much hope, joy, expectancy and some slight nervousness? Well, I just did!

First, I am excited because for the first time since I had to leave a dangerous, abusive situation in August of 2015 I have the opportunity to be independent again. This same possibility makes me so nervous. I got accepted into an artist-type apartment complex and I will still be near everything I need to be near. The only thing is, the rent alone is half of a month’s salary from my full time job. My hope is that I will make my executive marketing position with Melaleuca work for me. I am working with my mentor now. He heard about an ingenious way to reach people, grab their attention, give them the information they need, keep it personal and follow the rules. I will be working on that over my Christmas break. My other hope is to get a higher-paying full time job; which brings me to my next point…

Over a month ago I handed in a 55 B/C application for the Civil Service. The 55 B/C application helps people with disabilities to obtain gainful employment with the Civil Service. The office in Albany has been in contact with me. Granted, it was because they needed more information to complete the application. They needed proof that either, one; I faced a specific job loss, two; I am underemployed relative to education level or three, I was having difficulty securing long term employment. I went with proving number two. Relative to education (two Master’s Degrees) and Cost of living; I am making less than half of what I should be making. I proved this by sending the my latest pay stub, my graduate transcripts and Department of Labor statistics for income levels in the area where I live and statistics on median national income relative to education. Hopefully, I have put my Communications degree to work and proved my point. It would be good to work for the Civil Service because then, I will still remain on the Public Service Loan Forgiveness Program and make a bit more income than I am making now. Here is to hope.

I am moving into the apartments in January, given everything goes well with the artist’s committee. I will be meeting with them next week. I have no Idea how I am going to make the expenses work. At this point, I am going to put the security deposit on a credit card. I will then be going to ask for a loan to help with the expenses to set everything set up. I hate asking for a loan, but at least I am asking for help which is a big step for me. I have not figured out how I will work out my expenses beyond that in an absolute way, but often when I feel like I am flailing to make thing work and have no choice I figure it out.

Whether I feel like I can or not, here is to the jump…


Day 21: Broken Dreams, Convoluted Paths, Circles, and Hope


Only God can make sense, even circles out of convoluted paths 

Today my church is having a missions conference; there was a breakfast, and later, there is a dinner. I thought it pointless to travel all the way back home, so I am hanging out at the University down the street. The university represents a “circle of impossible to hope” in my life. Often, I have traveled on convoluted paths. I have felt lost, confused and without hope but then God does something, allows me to see something to restore my hope. Lately, I have been struggling with holding on to my hope. As I was walking around campus, my heart began to sink. I was reminded of how much hope I had while I was a student here and how all of that has felt crushed lately. I tried to get into one of my favorite buildings on campus; it was locked. I just could feel emotion welling up inside of me. Then I just let it go and walked over to another building and talked to a friend. I was reminded that God had made circles out of my convoluted paths before and I know he can do it again if He chooses.

I was born at this university–two months early–strangled in my umbilical cord at a pound and a half. I was a premie. (My parents had to dress me in Cabbage Patch Kids clothes because I didn’t fit into regular clothes). The year before I was born this university hospital was cited for pushing premies to the side and letting them die. All in all, I should not have lived. But, obviously, I did. Twenty years later, of no planning of my own I found myself as a student at the same university I was born at.

How I ended up at my undergraduate university was through going down one right path a bunch of wrong ones and a maybe a few right ones and a bunch wrong ones. One of the right paths was my year at the Institute of Jewish Studies after high school. I should have stopped there. But, I continued studying at Cairn. That was a wrong turn. I did not have a strong relationship with God at all. The pressure of trying to survive on a Christian campus when your faith is weak or even no-existant can make one explode. Not to mention, so much of my was emotionally broken. Then, I got physically sick, and doctors couldn’t figure it out. Apparently, when you are emotionally broken, and doctors can’t figure out a physical problem the patient’s emotional issues get blamed. That led me to depression and lost hope. Another wrong turn. My reaction was so bad that it drove me away from God altogether. I swore to myself I would stay away from God and Christianity. It made sense at the time, I swear.

Through all of my wrong turns, I ended up attending the very University connected to the hospital where I was born. I loved being a student here. I had so many opportunities. I even had a chance to go to Washington DC where I interned for the Federal Government for the first time and came to know the gospel and cling to it for real honestly. I was also finally correctly diagnosed. For years, what was called an emotionally triggered problem, is called generalized dystonia. Full circle hope.

A year after graduating I started graduate school. Right, turn. I had so many opportunities. I participated in a disability-rights internship program. Right, turn. I became an active member of a gospel-preaching church. Right, turn. I interned with the Federal Government. Right, turn. Then, I got deeply involved in a relationship, and so, begins the convoluted path again. I tried to end my life because I thought that was the only way I would get free. Ever since the day I had attempted to take my life I have felt like I have been on a convoluted path leading nowhere. That’s what that sinking feeling indicated inside of me today. I felt like I was going nowhere. But, as I talked with my friend and prayed with her, I remembered the previous full circle hope I had when I came to my undergraduate university. It is going to take time, but I know that God is in control and he can make circles out of convoluted paths.

In the meantime, I filled out two more job applications, filled out the paperwork contesting the SSA overpayment (again. This time I sent it certified mail.), made a few more appointments to do my presentation for my part time job, and I am working on putting an end to a damaging relationship. If I don’t finish this relationship, it will lead me down another unnecessarily convoluted path, and I can’t justify it.

“When it becomes apparent that your dreams can’t come true, that is not the time to take control. That is the time to lean hard on the only One who has ever had control. When it’s apparent that your dreams can’t come true that doesn’t mean your life is spinning out of control; it’s just a reminder that YOU are not in control. It’s not evidence that God has lost control is is just evidence that you are not in control.”–Andy Stanly

Days 7 & 8:On Sick Days, SSA, SSI, SSDI and Other Annoying things

Today I took a sick day from work. I hate taking sick days from work because I am always afraid that my employer will think I am “too sick to work” or even worse; being lazy. I used to wait to take sick days until I was REALLY SICK. One time I showed up to work with walking pneumonia, not a suggested course of action, FYI.  Today, I woke up and felt congestion building in my chest. Now, I could have gone to work. Everyone else has been showing up in worse condition. But, I decided to stay home to “nip it in the bud” so that it doesn’t become pneumonia. Can I tell you, though, even on my sick days I hope to get things accomplished. I will tell you now that except for a few phone calls and some reading and now this post I got nothing done today.

Some of the physical problems I have bee having could be related to some recent, major, annoying stressors. All related to the Social Security Administration (SSA). You see because my mother passed away before I was 18 and was a contributor to the household income my brothers and I all received Social Security Disability Income (SSDI) until the age of 18. Because I have a permanent disability that I have had since Bith I am entitled to SSDI benefits for the rest of my life. The income part is not what matters to me all that much, what matters is the Medicare coverage. (Managing a disability so you stay out of the hospital means lots of doctors appointments and medication and therapy that all add up.)

Well, I started working when I was 18. I have reported my income from every job. Even my first few that had laughable income amounts (Dishwashers, political telemarketers, and grocery deli workers don’t make that much…). I have not only reported my income but I have done it in a timely manner. I wanted to work for the Federal government, so why would I try to rip them off? Not to mention, I have a conscience and an insane “I can take care of myself” work ethic. Well, despite my best efforts, something went wrong and I now allegedly owe SSA over $4,000.00 from Social Security Income benefits. Because I allegedly owe them this enormous amount, they have also made me ineligible for SSDI benefits. (I’m sorry did my disability go away without my knowledge? Sure doesn’t feel like it!) Cutting me off from SSDI will also cut me off fro Medicare. Unless of course I magically come up with the requested back payments by the 25th.

Having unpaid premiums leaves me on Medicare, nominally, which means according to my private insurance through work they won’t pick up anything until claims are processed through medicare first. But medicare won’t process anything because of the unpaid premiums. Catch-22. Right now, this is causing a major problem because I can’t get the medications I need to function. One medication for a month’s supply “out of pocket” would be 135.00 and that is the one that is generic.

Right now, what I think I need to do is put the Medicare back payments on a credit card, even though, I really don’t want to use credit. In the meantime, I am in the middle of a battle with SSA to prove the “overpayments” were not my fault, and that there is no way I could financially make the payment. I called Social Security and Medicare yesterday. was so wiped out emotionally from the whole situation that I told the woman I spoke to at SSA that they were making me feel like it would be better for me to quit my job. I am not making enough at my job to survive. If I quit, all of my benefits would be reinstated, I would get back on a list for section 8, I would get food stamps and I could put my student loans into perpetual deferment because of low income. Sometimes this scenario is actually tempting, except that I would hate myself for being lazy and I would get so bored so fast.




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