What defines me has been an elusive question throughout my life. When you’re a child, life is simple, but it’s not until our teenage years that we usually start to push boundaries and explore different aspects of ourselves or identities. In adulthood, this becomes more of an existential question, such as, “Why am I here,” “What is my life’s purpose,” and “What will happen to me after I die?” It wasn’t until my world or my life, if you will, crumbled that I found the answer to my question.
Ten years ago, this month, I got sick. This isn’t a happy anniversary for me and it wouldn’t be for anyone, but it is an important anniversary. Basically, one day I was healthy and the next day, I wasn’t.
I think back to those first few days, weeks, and months after the onset and I wish I what everyone does in similar situations. I dream of being able to go back in time, hug myself, and give sage words of advice. Back then, no one was there to hug me and tell me it was going to be okay. Even adults need to hear those words. In times of trauma (and this was traumatic), we can become childlike, want our mothers and fathers, want someone to take care of us, and give us hugs and tell us it’s going to be okay, even if, it isn’t.
I was and still am single, so I had no spouse to comfort me and my parents had no frame of reference to what I was experiencing, so I was on my own. I went to all doctors’ appointments and tests by myself except the one where I had to be put under anesthesia. Nine months after the onset, I sat alone and scared in a room to one of my specialists. I had done what everyone shouldn’t do and looked up online what I was diagnosed with by that specialist and was petrified. I wondered if I would die at age thirty-eight and I began to cry. I cried tears of release that I had been keeping inside myself all those months and I felt sorry for myself because I was experiencing everything alone, so how could anyone truly understand how I felt.
In October 2007, my PCP (Primary Care Physician) told me what he thought was wrong based on my symptoms. I was petrified because I knew of two people who had the disease and it was miserable and incurable. So, I promptly made an appointment with what would later become an endless stream of specialists. Indeed, I keep the medical community in my area in BMWs and McMansions.
Specialist #1 put me through a weekly barrage of cultures and blood work along with X-rays, an ultrasound, a CT scan, and finally an outpatient medical procedure that required anesthesia. During this time, I was thankful that work was slow, so my taking time off for these appointments or working them into my work schedule wasn’t a problem. The daily pain and discomfort was a problem or more like agony. I just wanted a diagnosis in order to start treatment.
Before the outpatient procedure, I consulted with Specialist #2 (same field as Specialist #1), who told me what she thought was wrong despite the cultures that had been performed. During that visit, she was able to perform a treatment to help calm things down and it felt wonderful.
It had been 2.5 months after the onset of my symptoms and I was sick of being poked and prodded. I told myself that no one was going to stick anything else inside me unless it was going to make me feel better. So, I contacted the association for the disease that my PCP surmised I had. They were able to refer me a “Specialty Specialist.” This is a doctor who specializes in one area of medicine, but concentrates on one disease in that field. The bad news was that Specialist #3 was a located 2 hrs. (one way) from where I lived, but the good news was that he was not only a “Specialty Specialist,” but he also did research into the disease in an attempt to find better treatments, a cause, and God willing, a cure. At that point, I would have driven four, six, or even ten hours to see him if it meant a diagnosis and treatment for what was wrong.
When January came and I met with Specialist #3, he was a belated Christmas present. He was calm, reassuring, and diagnosed me on my first appointment based on my symptoms and medical history. I didn’t want to receive this diagnosis that my PCP predicted, but I finally had one.
What no one tells you is that you go through the stages of grief when you become ill. You don’t always go through the stages in sequential order and sometimes you go back and revisit a stage that you thought you’d overcome. So, at first, I was in denial, “No, this can’t be what’s wrong.” Then I got pissed, “How dare this happen to me! I’ve always been healthy! I don’t smoke, do drugs, or drink alcohol!” After the anger, I bargained with God, “If You make it not be this disease, but (insert disease name here) I can beat it. I’m young. I’m healthy. I can make it through that. Whatever You want, I’ll do it, just don’t let it be that.” After my diagnosis, I became depressed for a long time. But, I don’t think in this case “depression” is the right term for the situation. It was more like “mourning.” I mourned the life I once had and the life I knew I never would have. It would take me years to come to terms with my new normal or as some would call it, acceptance, but I still revisit the anger and depression/mourning stages.
Despite the current Republican narrative that sick people are to blame for their illnesses (a snarky thanks to Rep. Mo Brooks) that is not true for me and it isn’t for the majority of people who become ill. To put this in perspective, tell the parent of a child diagnosed with cancer that it’s their child’s fault that they got sick.
After my initial diagnosis, I was eventually diagnosed with seven more diseases, which is common for the disease that started the avalanche. Then came three spinal problems that may be work related. So, that makes a total of 11 including the initial diagnosis and all by the time I was forty-three. Let that soak in.
Three years after I got sick, I regressed to the point where I could not continue working or I would have died. I loved working and realized that I derived much of my identity or self-worth from my job. When I had to stop working, I didn’t know who I was anymore. What good was I to anyone? Who was I? If someone asked me, “What do you do for a living” what would I say? Why would anyone want to be friends with someone who didn’t live a “normal” life? What would people think of me when they learned I received Social Security Disability (SSD)?
Because many people think that SSD has become the new “welfare” and that it’s a generational problem, I want to give some background information on myself and my family. My parents instilled a hard work ethic in me through their example. I was raised on a small farm and each morning my father woke up early to take care of the animals, go to his full-time job, and came home to spend the evenings in the barn. During that time, he also sold horse feed and plowed snow at night. My mom worked full time and when extra money was needed for something special, such as a cd player for college, she took on extra jobs to pay for it.
Everyone has to pitch in on a farm, so I started working at six years old. In my preteens, I cleaned houses for people. When I reached legal working age, I was a maid at a motor lodge. During college, I worked a Friday “Night Desk” and cleaned the dorms during the summer. So, I worked more years than I have been received SSD and almost as long as I have been alive. I studied hard in college and could be found in the library while others were at parties and graduated summa cum laude with a Bachelor of Arts.
I was employed at the same company for almost two decades after graduating from college. During that time, I would often work to 9pm or beyond and on weekends, too, without extra pay (no union). My friendships and family life suffered, so to compensate I worked harder and took my self-worth from my occupation.
There is also an ugly narrative that people who receive SSD are lazy, grifters, malingerers, cheats, etc. I know because I’ve endured the insults, read about this phenomena in England where insults turned into a violent attack on a woman, cried after a one sided 60 Minutes piece and Washington Post article series turned these ugly stereotypes from people’s thoughts into what citizens would now call justifiable biases.
Some may think that only Republicans hold this view because of rhetoric from Republican Congressmen, but it’s not just Republicans. It’s Democrats, too, even Progressive Democrats. This is a hard truth that people need to look inside themselves and acknowledge. I think of myself as a Liberal/Progressive Democrat and Feminist, yet I, too, am guilty of biases and being blind to some issues, such as, continued racism in America.
I’m not writing this to chastise people, I just believe that everyone needs to be introspective. I hope that by giving readers a synopsis of what I’ve endured and what it’s like walking this road that they might find understanding and a realization that if they find themselves in the same position, they’ll be glad that SSD is there for them.
What no one discusses is that SSD recipients are not “getting rich” by “being on the dole.” The reality is that many families disintegrate, people end up losing their homes, and have to file for bankruptcy. So, not only have we been robbed of our health, but often we lose our relationships with friends and loved ones, our homes, and financial solvency. I know, I’ve had friends and relatives turn away because they no longer had anything in common with me, I’ve seen my parents’ anguish over wondering what happened to their healthy and vibrant child, I’ve had to cut many of the everyday things that make our lives easier, and I constantly worry about money and how I’m going to afford my medications and plethora of doctors. Even on Medicare, one has to worry how to afford medical care when you have a multitude of problems or just one big expensive illness. Plus, I’m in that “middle zone” people don’t talk about. The one where you’re poor, but not poor enough, so you can’t count on Medicaid to help out.
Besides, the financial and interpersonal aspects, there is also the emotional toll, too, and not from fighting to get better. I have felt shame and guilt from not being “a productive member of society.” Again, my identity was derived from my profession and sense of satisfaction from working my hardest and putting in the extra time that was needed.
Some will call this self-pity or melodrama, but when I stopped working, I was broken emotionally. I was a shadow of my former self. I had gone through not just one or two major events, but many. Again, this article is only giving you a glimpse of the past ten years. I had no idea who I was anymore. What made me, me?
I’m not proud to admit this, but I not only contemplated suicide, I had a plan. I had a will drawn up and made arrangements, so no one would have to be burdened by me again. What stopped me is the beautiful creature, who has been the one constant in my life-a bird, specifically, a parrot. My Goliath. Even though, I had plans set for a “forever home” for him, I wondered what my not being there would mean to him. Goliath is an African Grey and they have the intelligence of a five-year-old and the emotions of a two-year-old. He picked me at the breeder’s home when he was a chick and the only time we’ve been apart is when I’ve traveled for business and he stayed at my parents’ home. They are in their senior years now, so they would not be his forever home. I couldn’t leave him. In essence, he saved my life.
Not many people realize the emotional comfort one can receive from a non-traditional pet, but you can. So, I am an animal advocate, especially, for emotional support animals.
Even though my Goliath’s love stopped me from killing myself, I still wasn’t even close to being pieced back together. I cry every time I hear Miranda Lambert’s song, “The House That Built Me.” The words evoke everything I’ve felt in these past ten years, particularly, when I was first diagnosed and stopped working. Just like in the song, I wanted to go back to the farm where I was raised, but my parents had moved years ago. Yes, it sounds cliché, but I truly wondered if it could stitch me back together. I so desperately wanted to get back to the person that I was and “find myself.” I wanted to touch the animals, walk through the house, smell the hay during the summer, and walk to the creek and sit among the wildflowers where I played as a young girl. Remember when a person has suffered a trauma(s) they can or want to go back to that feeling from childhood of comfort and safety. The place where there’s someone who will make it all better. Somehow, I lacked the words to explain this to my family and I don’t know if they would have understood.
It has taken years to come to terms with my new normal. I thought I had, but I was wrong. Or maybe I wasn’t wrong and I’m just revisiting one of the stages of grief.
On November 9, when I learned that Trump had won through another electoral college victory that robbed U.S. citizens of the popular vote candidate, I knew what was coming. I had heard his pulled from the sky stats on billions in fraud from SSD, read an old Breitbart story that claimed the same without any supporting evidence, and read a person’s comment at the end of the article that said, “Let them die.”
Trump’s proposed budget that slashes social safety net programs to give a tax cut to the wealthy in the guise of “tax reform,” was no surprise to me when it arrived in May. What has surprised me is that not many people were aware of this except for cutting Meals-On-Wheels and that it wasn’t a “done deal” because it has to be approved by Congress. I was also surprised to not hear a peep from Democrats (except from two women, Pelosi and Warren) about the proposed cuts to SSD. They talked about the cuts to other programs, but it was crickets on SSD because as the English say, “We’re skivers.”
In the past, there have been other proposals to cut Social Security or just SSD, but luckily a Democrat was president and Democrats controlled the Senate. Each of those times, I would call and write. Now, with one party rule, I’m more scared than ever. I have been terrified since November 9th. Unlike Trump, I’m not a narcissist, I’ve been scared for every vulnerable person: immigrants, minorities, DACA children, refugees, people who receive healthcare because of the ACA, people’s whose healthcare plans improved because of the ACA, women and their right to control their bodies, and everyone who relies on a social safety net program.
I’m a control freak and when I got sick, I felt like I had no control over my life anymore. Who doesn’t want to be in control of their own destiny? But now, my fate is left to ideologues in Congress, who bend the rules to suit themselves, so that they only need 50 votes to pass this budget.
Without SSD, I will be unable to keep my home or afford all the medication that I take, specialist copays, and copays for blood work, and other diagnostic procedures that I need every year and, sometimes, multiple times throughout the year because as I said, no one is getting rich off SSD.
Anyone who feels that people on SSD are lucky because they don’t have to work, I ask them after reading my story would you really want to trade places with me? I would trade places with you in a heartbeat to have my health back and that future that I had worked hard for.
What I have come to realize in these ten years is that I am more than my illnesses, my ability to work, my physical appearance, and the money in my bank account. I no longer believe that there is any one thing that defines us. But, I do know that what is most important is how we treat others and the relationships we have in our lifetime. When you die, do you really imagine that you’ll be reflecting on the kind of car your drove, your expensive home, how many gadgets you had, how much money you accumulated, and how many hours you worked? Or will you be thinking of the people in your life, the time you spent with them, and the memories that ensued from those precious moments?
@BossBird17 lives in the United States; loves animals, books, movies; believes pizza is another food group; and is owned by a parrot.