As I said on my “About” page everyone’s definition of success is different. I also have no intention of providing a step by step, “how-to” guide, so even if your definition of success is different from mine I hope you will be encouraged to move toward your own goals as I press forward to mine day by day.
Here is my overall definition of success: I want to live a life of integrity and joy. I want to one day have a family of my own, but, as I wait for that, I want to be a blessing to the one I have. Financially, I want to be debt-free. I want to be able to live a life monetarily where I can freely give to others while taking care of myself and my family. Professionally, I want to work for a place that has the mission of working with those who have been marginalized in society to give them the tools to push out and life truly free lives.
For me, it helps to have these goals categorized.
Integrity and Joy:
Memorize “Jesus in Every Book of the Bible”
Read 2 Psalms and 1 Chapter of Proverbs a day
Call at least two family members that I don’t see that often once a week
Be involved in the family gatherings that are here.
Get everyone’s birthdays, and send cards
Pray about relationships daily
Work hard at my current full-time job
Pay down debt, don’t use credit cards.
Develop the skills necessary to be successful at working for the health care business I work with
Create Overview video for health company, create business-end video, create grabber video
Re-work Budget, stick to it!
Apply for two new jobs a week
Learn about “Cold Networking”
Post on professional sites at least 2 times a week
Driving lessons; work on finding ways to afford a car and the car insurance
At the bottom of a friend’s email under her name it reads, “Adapt and Overcome.” She says that statement a lot, and I had come to adopt it as a personal mantra, After all, people with disabilities, such as myself, spend their lives adapting and overcoming. It’s a matter of survival more than choice. I suppose we could choose instead to sit in institutions, collect SSI nd die; but I can promise you a majority of us that can make the cognitive choice don’t want this kind of existence.
After the “Die-in” at Senator McConnell’s office on Thursday, June 22, 2017, I realized that the mantra od “adapt and overcome is not only unrealistic but very limiting as well. Mantras aren’t supposed to limit a person–they are meant to propel you forward into the limitless. Life and society have trained me to “adapt and overcome” but I think a much better mantra for me is “adapt and resist.”
I have been trying to adapt and overcome since the day I was born. Sure, It’s gotten me further than anyone expected. I could sit here and list the ways I have adapted and overcome. That would fill you with nice, warm, inspirational feelings. But, I hate to tell you–I am not here ti be anyone’s “inspiration.” I am here to live the life I was created to live and be an active member of society (yes, that very society that wants to leave me on the sidelines). Adapting and overcoming has directly made me an inspirational chess piece in society’s game of “good feelings.” I’m done playing the adapt and overcome game. That game is for society’s momentary benefit not their long term benefit or for my benefit at all. It’s time for me to “adapt and resist.”
For those of you who don’t know, which is probably many, if not the majority; “Adapt and Resist” is the call of ADAPT. ADAPT is an active, in-your-face, non-violent disability rights group who has forged inroads for the disability community here in America and overseas for generations. Here in America, the actions led by this group got people with disabilities access to busses and other forms of public transit, this group got individuals with disabilities access to buildings and education as well. It was because of their actions that Independent Living Centers were formed and major pieces of Legislation pushed into the forefront of the American awareness. People in ADAPT didn’t just try to hop up on sidewalks with their wheelchairs they took sledgehammers to the sidewalks and made curb cuts.
I am no longer going to play the part of someone who has managed to “hop up on a sidewalk.” I now have my sledgehammer in hand. My work ethic is outstanding; I go above and beyond in my job every day, yet the woman who everyone knows shops all day is treated with more respect? “Hop up on the sidewalk” would have told me to keep working hard–they will respect you–things will get better. The sledgehammer in my hand says to me, moonlight with an online health company and search for another job where I will be seen for my skills and abilities. I have two masters degrees, published journal articles on hiring practices and over five years of work experience and here I sit as a receptionist being paid below the poverty line for where I live. “Hop on the sidewalk,” tells me don’t worry, things will get better, you may even get a license and be able to afford a car. The sledgehammer in my hand screams, “get the hell out of here! Why live somewhere where people with disabilities aren’t actively in the community? Why stay somewhere where constant inaccessibility screams rejection?”
I’ve been foolishly living a disillusioned life that says if I adapt and overcome things will change. No, they won’t. If I want a better life, I need to “Adapt and Resist” one sledgehammer swing at a time.
I started reading the book When Breath Becomes Air by Paul Kalanithi Wednesday afternoon during my lunch break. I only made it through the Preface and the Forward so far, but I can tell you that there was nothing in me that wanted to put the book down and go back to work, except for the fact that I don’t want to be fired. Minor details. The books’ forward begins with, what I can assume is, close to the end of the story. This provoked a thought within me: What if I were to write the forward to my book now? So many people have encouraged me to write a book, and I never can think of where to begin. Why not start with some highlight of an ending?
I carefully am slicing the vegetables go into this evening’s beef stew. My hands shake a bit as I slice (One of the joys of having Cerebral Palsy). I slide the sliced vegetables off of the cutting board and into the pot. As I smell the aroma of the preparations of tonight’s meal I can’t help but smile. My family and I live a simple life, but we love it. My husband is sitting at his desk in his office working on a website that he just picked up from a new client. Sometimes when I hear him making groaning noises I worry he is ripping his hair out; but only for a few seconds before I just laugh inside. He may be frustrated when he lets out that groan, but I also know he loves what he does and he’ll figure it out. Like me, he was told be many he would never make it. Now, he is a CEO of a web design company that focuses on accessibility in web design. I won’t lie when he first started his endeavor I was nervous for him, afraid at times he would lose the roof over his head or not have food to eat. He always assured me that he had backup plans. I always prayed for him; that he would never have to go to any of his backup plans. Now as I listen to him type away at his keyboard my nerves are not bothered by his work. Now they are split over other things instead!
I put the lid on the pot to let the stew simmer for forty-five minutes. As the stew simmers, I make sure everything else is prepared for the meal and set the table. Two adult settings and one for our small toddler who is right now, thankfully entertained by the toys in their playpen. The newest addition to our family is miraculously sleeping in their infant seat less than a 20 feet away. Usually, things are not this peaceful and in a half an hour I’m sure either one or both of them will be crying for a need to be met. As I look at both of our children not only do I consider the current peacefulness a miracle but I consider their very existence a miracle. I know, in reality, the existence of any life is a miracle, but my husband and I were faced with particular challenges in creating this family.
I am not going to go into all of them right now, but one of the first ones we encountered was that before we even got married, we wanted to be financially stable. Not a bad idea. Both of us, however, have Cerebral Palsy a disability that is considered a “targeted disability” when it comes to workforce statistics. My husband was smarter than I was and figured out much earlier in his life that he would have to forge his path to know financial stability. Me, well, not so much. I had this disillusioned belief until my early thirties that if I got the right degrees, did internships, kept connections and worked hard that I would get a good job. Granted, this had seemed to be working until I was twenty-nine and a man who will only be known as “M” throughout this story tried to destroy me. After my experience with “M,” I had to start at the bottom of the totem pole in the workforce again as if I never went to school, had no experience. It was one of the most bittersweet times of my life.
Eventually, through some exceptional circumstances, I broke into the corporate world getting my first corporate job right outside of Boston MA in a human resources department. This was such a blessing because when I first met my husband he lived in Massachusetts and I used to live in New York. A long distance relationship for anyone can be difficult. A long distance relationship for two people with disabilities on low incomes; even more so. How did I break into the corporate world, one in which I have been able to stay in, grow in and love? Well, all in all, it’s a long story. But as my husband puts it; I found my “Mr. Johnson” (this is a reference to “Mr. Johnson from NASA as portrayed in the 2017 movie “Hidden Figures.” My current company was able to look past societal prejudices, misconceptions, and statistics–and they took a chance on hiring me–an individual with a “targeted disability.”
Things weren’t always like this and trust me, the scene before me now is a rarity. It is almost never this peaceful; things hardly ever go this smoothly. As a matter of fact, I wouldn’t be surprised if I burn the stew simply because I’m lost in the moment! Thankfully, my family thinks “burnt” is a natural food flavoring! Yes, my life was, is and probably always will be a little crazy. I wouldn’t have it any other way. I mean how else would you get a book like this in your hands?
Before you turn the page to the first chapter, I feel like I should be fair and tell you some of the stories you will read about. That way you can brace yourself; at least somewhat. Let’s see there’s the time when “We Didn’t Start the Fire” by Billy Joel became my family’s theme song for me. Not to mention, the “beer bag” story. Oh and the one about how I told God I would never be stupid enough to love another man, and I was fine being single. Yeah, Cerebral Palsy is brain damage caused at birth I think that’s how my mind justified allowing me to go back on that one, the heart; that is a story all on its own! Feel ready? No? Oh well, here goes nothing…
*This forward is “just for fun,” it can be edited changed and rearranged at any time. And actual forward in books are much longer–this is a blog post. So all of you reading this, flipping out, quit it. “The heart of man plans his way, but the Lord establishes his steps” (Prov. 16:9). I am just having fun with the desires of my heart, but I know that God is the one the writes my story and I am wonderful with that.
I fell off the grid again. I was told that if I wanted the writing of a blog to be successful, I should write on it four to five times a week. I have been failing at that miserably. I love writing, but there just doesn’t seem to be enough hours in the day.
So here is the latest update: I have applied to many jobs in Boston, MA. (I have seriously lost count). I have heard nothing from most and have gotten clear rejections from the rest. Most of the silence and straight rejections have not bothered me but yesterday I received a rejection, and I just wanted to quit. I was near tears at the end of the day and instead of doing anything useful I went home sat on the couch, binge ate (a weird combination of food by the way: popcorn, cheese, harvest grain crackers, frozen mangos, frozen peaches and I think even some Challah), and caught up on some season finale’s of my favorite shows (Elementary, NCIS New Orleans, Bule Bloods and Bull). I also put my boyfriend through the ringer with my depressive texts.
I don’t know why this rejection, in particular, bothered me. I just couldn’t get the broken record of all the messages I have been fed by society to stop. I think what makes it so hard to stop this broken record is that some of the things on the record are statistically true and a reality for people with disabilities in society. Lies get mixed in there but when the sting of rejection when another door slams shut it’s hard to differentiate between reality and the lies. Not only that, but even if I can distinguish the truth and the lies I am left feeling like there isn’t anything I can do to fight against the persistent discrimination against people with disabilities in the workforce.
I am better today. I’m going to use my skills today. I’m going to the gym, physical therapy and I am going to take a lavender detox bath. After that, I am going to call my Melaleuca director, repost my professional resume and watch the video about cold Networking from Ashley Stahl International. I already asked forgiveness (and was granted it) from my boyfriend for writing such foolish texts. I thank God for him. This journey to success is difficult and painful. I a grateful to have so many supportive people in my life.
This past week a former professor sent me an application for and the suggestion to participate in the Rotary Peace Fellowship. When I first read about it; I got so excited! There is a program that takes place at the International Christian University in Japan. The idea of being able to live overseas for two years for free with a stipend and a fully paid for Masters Degree lit a small fire inside of me. Not to mention it would get me out of the current situation I am in.
That fire was quickly snuffed out me as I had a logical conversation with a friend of mine. Number one, I don’t need more education at this time. Two Masters degrees aren’t opening doors for me, as a matter of fact; they may actually be closing doors. Logic says a third would just slam more doors. Number two, there are too many considerations medically with a long term trip that would at least take a year to safely sort out, and I would be leaving in August if I got accepted. Number three, I have too much going on personally with relationships to just get up and run away. Running away used to be a fun concept to me but the more I learn to actually form lasting, real relationships, the more running has lost its glamor. Last, but not least, God is not calling me to go overseas, and he is not calling me to pursue that program.
So, I am staying here, working hard at my current job, doing what I can to build up myself with the online health business I do on the side, and I will keep applying to other jobs. God will open the right door. It will not be an escape plan, but the proper move forward.
Looking at those statistics as a person with a “Targeted Disability*” can easily lead me to wonder why I bother trying so hard to change my circumstances. I mean, looking at these numbers you think I should just give up and go back to living on SSI, and I should definitely not think that I deserve a better position than what I have now. I should just be happy I’m employed at all.
But, I refuse to accept the status quo. I am too frustrated and angry. I have worked too hard in my life to remain satisfied with my current circumstances. I heard it said that the most faithful people are the most frustrated people. I believe that applies to me at this point. First, my frustration broke me down. the frustration was leading to me believing the lies that said, You are a failure, you aren’t good enough, the only thing that lies ahead for you is more humiliation and shame. It’s been a battle to fight through those lies. I know they aren’t true. But, given a week moment, those lies can quickly come crashing down on me.
Now, today, at this time my frustration is fueling me towards change; the change I deserve. When my frustration hit this tipping point, I decided to enter the battle, and I will fight until God’s purpose for me is fulfilled in my life. For a while, I accepted where I was in the workplace because I rationalized that God can get glory from my life no matter where I am situated. That statement is still true, and so I am managing my current situation with that in mind, but I also know that I have been prepared for so much more. My frustration has engaged me in a battle to change my circumstance. Of course, I want my circumstances to change so that I can stop living by a thread and have some freedom. But, I am doing this for other people with disabilities. When I get myself into a better place, I can become a voice for people with disabilities. I can push open doors for them that have continually been slammed in my face. I will do this through getting a better job and through Melaleuca.
*Targeted disability is defined as “a disability that the government has, for several decades, emphasized in hiring because they pose the greatest barriers to employment, such as blindness, deafness, paralysis, convulsive disorders, and mental illnesses, among others.”
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.
Back on task–moving from survival to success. As you know, I am not only job hunting for a Human Resources position within a corporate company, but I am also a marketing executive for the largest online health businesses in the United States. I started with them back in September, and even though I am 110% behind them as a company and love their products, I have had a problem enrolling shoppers.
Why has this been so hard for me? I could make a list of reasons why I think it hasn’t worked but if I am honest, getting out there and networking, it’s just not easy for me. Not to mention, I have been trying to do it in random places just hoping to make things work. Well, I am starting to change my strategy a little bit. I am doing so good old-fashioned, face to face networking. I am great opportunities coming up this week to do that very thing and guess what?? Instead of being completely terrified, I am excited!
On Thursday I am joining a “let’s get fit and network” meetup that will be walking together at a local park about two towns over. I love walking, and being fit is what this company is about–perfect fit. Saturday I am doing a 5K to raise money for a Lupus Foundation. Great place to meet people and network with those that obviously care about their health. (Sorry, but, there are easier ways to raise money for a cause than running just over 3 miles! Just Sayin’!). The Following week I am going to a business networking meeting at a local resturant. It’s time for me to hustle, so people ask me–how are you making this work??
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.
I took a couple of days off, my brain has been in a bit of a fog because of the barometric pressure changes. One of the many joys of having C.P. is that when weather patterns regularly change your. body. just. hurts. It was good for me to take a break from writing because when I am in physical pain my brain is not always so kind to me and I don’t think clearly. But today, I feel better, and I have this NEED to write. Any other writers out there ever feel that “NEED?”
In my “First Five” Devotions the focus has been on King David’s life after he becomes king of the united kingdom of Israel. In the last few days, the story has gone from David’s sin with Bathsheba (2 Samuel 11), to Nathan Confronting David about his sin (2 Samuel 12), to David’s daughter Tamar being raped (2 Samuel 13). All of this because of past and current events has stirred up so much emotion within me. At first, they were feelings of fear and depression, then God in His mercy; turned them to reminders of restoration.
You see, when I read 2 Samuel 11 and 12 I was reminded of my past relationship with M.E. For those of you who don’t know, he was a man I foolishly fell for about three years ago. Our relationship progressed too quickly, and despite the warnings that two women from my church tried to give me, I allowed events to occur that I thought would never happen. By the time I was able to get free of that relationship I was beaten down as a person. I felt like Tamar did in 2 Samuel 13:
Now she was wearing a long robe with sleeves, for thus were the virgin daughters of the king dressed. So his servant put her out and bolted the door after her. And Tamar put ashes on her head and tore the long robe that she wore. And she laid her hand on her head and went away, crying aloud as she went (vs. 18-19).
Because I felt like my situation was my fault I also felt like I deserved the same fate as Tamar: So Tamar lived, a desolate woman, in her brother Absalom’s house. (vs. 20b). But, last week, I had someone precious give me an amazing gift. He walked in a 3K for HAWC (Healing Abuse Working for Change) in my honor for surviving the abuse I had gone through with M.E. I may have made foolish decisions, but I did not ask M.E. to lie, I did not ask M.E. to control me, I did not ask M.E. to treat me like my body was for his pleasure alone, and I did not ask M.E. to psychologically, emotionally, and in the end physically abuse me. When the precious, amazing man walked in the HAWC walk to honor me for surviving, it finally clicked that it wasn’t my fault and that M.E.’s abuse was not my deserved punishment for foolishly falling for him. The action of honoring me in this way made me remember a passage in Ezekiel where God ultimately redeems and restores us:
I clothed you also with embroidered cloth and shod you with fine leather. I wrapped you in fine linen and covered you with silk. And I adorned you with ornaments and put bracelets on your wrists and a chain on your neck. And I put a ring on your nose and earrings in your ears and a beautiful crown on your head. Thus you were adorned with gold and silver, and your clothing was of fine linen and silk and embroidered cloth. You ate fine flour and honey and oil. You grew exceedingly beautiful and advanced to royalty.And your renown went forth among the nations because of your beauty, for it was perfect through the splendor that I had bestowed on you, declares the Lord God(Ezekiel 16:10-14).
My God has taken my torn robes, ashes, empty future and given me splendor and hope. He has redeemed and restored me.