My Disability Story

I lost my job of 12 years in September of 2010 and it was the best thing that ever happened to me. Well, in many ways it truly is the best thing that has ever happened to me and in other ways it was the beginning of hell.

For years I had wondered what was wrong with me. Why I was suddenly so incredibly tired all the time and why I couldn’t stay awake or ever feel good any more. I put it down to being a night person working a day job and not being able to get enough sleep. Little did I know, I was right but just didn’t have a name for it. In retrospect, things, more or less, kicked off with the birth of my son in 2003 and then a really bad car accident in 2007. My health was never the same and things weren’t getting better. They were getting worse.

I was seriously worried for the first time about what could be wrong with me.

After I was diagnosed in January of 2011, everything became abundantly clear. The memory loss, constant pain, headaches and migraines increased in numbers and intensity, unable to sleep, waking up exhausted (truly exhausted unlike anything I have ever experienced), unable to finish sentences, having a loss for the right words to use, and the list of symptoms were growing on a daily basis. After the doctor uttered the word – fibromyalgia – everything fell into place. I began to understand why I am exhausted all the time (and I don’t use that term lightly). Why my cognitive functions have been decreasing and why I feel like I have been hit by a bus. Constantly.

I was not only contending with my physical and mental stressors but also dealing with my husband’s physical and mental issues as well as my son, who is on the autism spectrum. We eventually used all our savings to live on while looking for jobs and trying to complete our degree(s). Our finances took a hard hit and we ended up selling personal property to pay electric bills and buying food. This will put a strain on anyone and not knowing where you going to get money from to keep the lights on and food on the table is just more stress than one person can handle.

At this point, I am fighting daily with my mortgage company trying not to default on my mortgage and with the power company to keep our lights on. No one from these companies was sympathetic to our situation in the slightest. We not only sold off personal property but cancelled cell phone service, cable/satellite, long distance and any extras we had. We didn’t have a lot of extras to begin with as we were already living as free of unnecessary things as we could. We still do not have these things. We purchased cell phone service on a prepaid card and never turned satellite back on. We kept the internet as that is the only thing keeping us sane. Anything else was seen as a luxury and was stopped and/or cancelled. No more outings, weekend trips, no more clothes or movies. Nothing. If we need something, we save up what little money we have coming in and purchase it. We do not have credit cards or loans.

In December 2011, I managed to land a job doing something that I should have been able to do in my sleep. I was excited to be working again and how outstanding that it was a job I understood and had the background to pull it all together. However, after barely making it through training, I realized this was not going to be as smooth as I thought. But no worries! I am smart, I have a degree and I know this field! I can do this!

My health was much worse than I realized. I was losing focus, motivation and the pain was so intense I was unable to concentrate on my duties at work. I thought – I’ve been through this before. I can handle anything. I just need to keep at it, establish a routine and get on with it. That did not work this time.

I was more stressed out than before. I had migraines what would drop an elephant and nothing was helping. I remember sitting at my desk when the epiphany hit me. I can’t control what is happening to me. I can’t make any of this madness stop. I can’t make any of this better. No matter what I do – it will not stop or get better. I remember getting up from my desk and going into the ladies room to cry. I sobbed for a long time and it was so painful and so discouraging I became angry. Angry with what my body was doing to me and for what life has laid on me. Why me?? Why this?? Why now??

In my heart, I knew there were and are so many others that have things worse off than us. I know that. Don’t get me wrong, I am grateful for what we do have and give thanks for that every single day. But there were things that I had to do – and I needed help for my family.

I worked for about 5 months before I quit. I quit because I didn’t want to get fired for absenteeism. I had already missed several days due to my health and I was still within the 90 day ‘probation’ period. I missed a couple due to my son’s health and the rest were mine. It’s not fair to the company to lug me along and I then become a liability – and that was just not fair. They hired me in good faith that I would be a responsible and dependable employee. I felt I could no longer give them that employee. So, I quit.

I made a last resort decision to file for disability. I did not want to but I knew I had to. I discussed it with my doctor and she agreed. The symptoms for fibromyalgia and my other conditions generally do not get better with time – instead they get worse. It took nearly three years to get my disability and we fight everyday to keep our home and what little sanity we have left. Our son comes first, and everything else is negotiable.

After that, I had to file for food stamps and then try to work daily with non-profit organizations in hopes that they would offer some assistance with the electric bill and/or food. I was humbled quickly and completely embarrassed to even have to be going through this step. I also realized that I have no other choice in asking for help. This is not as simple as a lot of people may think. This is an ongoing, constant struggle for help. I was on the phone, emailing or snail-mailing something every single day. Constantly from 8am to 5pm – this was my job. Churches, as well as community based aid, are only allotted so much to help. Once they do help you, most of them will not do so again for another 12 months. Plus, there are more people in need than there is assistance available – so its a real struggle to get any assistance with electric or mortgage/rent to begin with. The only assistance we received was for a couple of times on the electric, the EBT for food and, of course, Medicaid. Everything else we let go and sold personal property in order to make ends meet. Thank goodness we had already paid the car off and all our credit cards. We joined several food banks and this was the only area that we didn’t have a problem getting assistance for – everything else was like herding cats. Impossible. Getting to the food banks was another whole issue. Although we have a vehicle, we often did not have the gas or money for gas to get where we need to. I lost faith in some of the larger non-profit organizations as they seem to not be so much about helping the individual as the cooperation.

Just to throw in a clarification: EBT only pays for food, unless you qualify for temporary family assistance (which gives you a small, and I mean small, cash dividend – but you must qualify). It does not pay for paper towels, toilet paper, cleaning products, personal care products, laundry supplies or anything along these lines. Food only…. and not hot food from the deli. You must magically get these products from somewhere else… and that is not as easy as it may seem either. Asking for assistance with toilet paper and cleaning products will humble someone in a flash.

Nonetheless, it is difficult for me to understand why people are so quick to lay judgments on people for being in the EBT program or Medicaid – when that is their only alternative. I am pretty certain that I was judged because my disability is not visible or is thought to be like “Aunt Sally” who is doing fine with her fibromyalgia. I have to say that, even before all this happened to me/us, I never once looked down on anyone for having to do what they needed to in order to survive. I will never be that person that throws out a judgement on any matter. My mother taught me early on that judging people is God’s job, not ours. I miss my Mother.

Just as a sidebar – I have always been able to see the other side of things and to never really believe everything you see. I smile and carry on with my day trying to stay upbeat – but that doesn’t mean I am not hurting or screaming inside. There is always a side of that person’s story that you can’t see. It may appear this person is just sitting home doing nothing or thought to be lazy. You don’t know what that person has been through or is going through and no matter how many words are used to explain – a lot of people still won’t understand or even care. It is my opinion that people shouldn’t be so ‘holier than thou’ to assume they know everything. Makes me wonder if they can imagine what might be misunderstood about them. But I digress.

The person buying food with an EBT card and talking on their smart phone is a good example. For me, I had my ‘smartphone’ long before this happened to me. In fact, we have a couple of nice things, not many mind you, we do have a game console and a nice television, but this was all paid for when I was working. Not on credit or a loan but paid cash. Why shouldn’t we have something nice? It makes me and my family feel better and keeps us motivated to want to take care of ourselves. I worked for over 35 years paying into the social security system so I would be able to retire one day. Unfortunately, disability happened before I could retire and I worked long, hard hours at many jobs in those 35+ years and I have the right to my disability pay. Just saying….

We are no longer on EBT and we no longer seek assistance from non-profits etc. We do still keep in touch with a couple of the food banks and we still do not have “luxuries” or extras. We still cannot afford to go on outings or to the movies but things will get better. Like I said, my son comes first – everything else is a wash. Disability is not for everyone or the faint of heart and it will certainly not make anyone rich but at least I know its my money and I earned it.

I am grateful and thankful for everything we have in our little corner of the world. I am thankful to those friends and family that have stuck with me and who have listened to me but most of all for believing me. I mean, why would anyone make this up?! 🙂

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3 thoughts on “My Disability Story

  1. Very interesting post. I definitely know what you mean about it being the best and also one of the worst things that can happen to you. Financial stress puts a real damper on things, it’s feasible to cut out job stress, and people stress, and all sorts of things, but unless we have someone who can support us (without feeling like we owe them) money stress is something that is tricky to get rid of.

    I’m glad you are all doing better now financially- you definitely deserve it! Looking forward to reading more 🙂

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