In my new family by marriage, we like to preface a good story with, “this is a story about…” Thus the title of this article. I plan on this being a new series, so I’m not diving in too deeply. Let’s call this an overview.
Upon reading this, come of you may love me more or hate me and never come back. Who I am, though, is a very cut-and-dry, black and white person. I see very little gray in the world, though I’ve been through enough of those muckety-muck college courses to hear about how the world is painted in monochrome.
I guess I’m saying, you’ve been warned if you want to just keep thinking of me a nice, positive guy who thinks the best of everyone and wants to help people; because I am, but I’m an onion with many layers. I chose these two photos for this piece because they capture my attitude pretty well. I only listen to those who have my ear through earning my respect from friendship, past experience, or academia that isn’t useless academia. I will go up that hill. I will gain this weight. I will live a long and healthy life with Beautiful. I will not accept anything less than the best for us.
I may have come across harshly with a couple of Twitter folks last week when the topic of being disability came up, so I want to discuss the topic a bit. Explore the water. Clear the air. Join in and let’s see how the community feels. I really hope this isn’t too disjointed, because it ended up in four separate articles by the time I was done.
In Tampa, there was/is this program called Abilities that I used their assistance around 1998 because I was a poor college student who wanted to lessen the burden from my parents’ budget for all of my extra food and some medical supplies. I had a job working at the cancer lab on campus for $5.15/hr that year, which basically paid for my gas and let me go to a movie per week, which I went to early to study in the big, quiet theater. Abilities needed all of my food and medical receipts and pay stubs to process everything, then I got a reimbursement check. Isn’t it nice that they didn’t bother to help me with budgeting or making sure I was making the money I was earning work for me? They didn’t teach me to fish, they just gave me as little fish as possible to live on “better.”
Then I got a raise. $5.45/hr. I was no longer eligible for the program because I was earning too much money. Excuse me? I’m living with my parents making just over minimum wage! In case anyone is keeping track, that was, even back then, below the poverty level.
I was getting $200 in food gift cards per month to buy high-calorie food like steaks and frozen entrees, I got a reverse-osmosis water system, and my first Vest (Hill-Rom sucks) with the program. On a monthly basis, they were providing me with a 10% “raise” by removing those expenses from my budget through reimbursement.
I made a decision at that point: I will never let someone else tell me how little I can make and still receive the same amount of money I have grown accustomed to.
I didn’t want to live in my parents’ front bedroom forever. I found a roommate and moved out. Then I found the ultimate “roommate” when I was back in my parents’ front bedroom again in my mid-20’s. Loserville. It was time to move out again and make a man out of myself so I could be perceived as possible marriage material.
I climbed several “job ladders” where each job paid a bit more than the last. When I reached the top of the last ladder I was at (my corporate job) due to educational stonewalling and tenure in the position I wanted that was only occupied by one person at a time, I left to work from home, but with another company. It was the most exciting, but scariest decision we made as a couple. Together, we were making enough money to have bought our house, and we were only 4 months into our payments when I jumped ship for another schooner. Five months later, they decided our relationship was over, but I still had my COBRA from my corporate job going.
It was decision time. Beautiful came home early from work to be with me – and I was a mess. I had to figure out how to convince her that I could never work for anyone again. “I could just be fired again. That’s not job security. Let’s make our own job security.” I’ll base it on hard work, ethical practices with clients, and driving my skills with what I already did on the computer to all new levels.
She agreed, but for a time. She was allowed to be skeptical for 3 months, and if she didn’t like it after that, I had to get a job. We had the money in savings if we needed it, but we if we had to use savings, I was fired from working at home, too. I formed an LLC and things shot off! May came around and I had August’s money in the bank and I remember thinking, “this would not be possible on a paycheck system.”
This series isn’t going to be all about me and what steps I’ve taken to do what I do. Beautiful used to joke that I sit at home and hope people send me money so I don’t have to go get a job. Now we sing a new song… together. Let me help you do what you can to earn what you can and forget about those limitations on your income. You don’t need them! You can out-earn anything they would dream of sending you to help with… and they will always have the power to say, “NO!”
With insurance that covers what you need, your preparedness package is the out-of-pocket expenses and co-pays that arise in addition to your monthly premiums. These are all relatively budgetable items, but the first year is rough and full of surprises, it is well worth it. We are getting caught up on a rough beginning of the year while I was wrapping up college, but I’m running like a V-12 Ferrari now and we will be prepared for the rest of the year and the year to come.
Don’t stay home being your parents’ child forever. Spread your wings. Find a way. Make it happen.
If we are having a discussion and I hear, “I can’t do that because I’m on SSI disability and they will take that away from me if I do that,” we are going to be having a deeper discussion about skills, confidence, and that sort if I care that much about you to go that deep. Some people I do, some, I just realize they are so far beyond what I can do to help, I can only watch the train derail. I will admit to being speechless the first time I heard that excuse, but I have a response for that now.
To be clear in ending this edition (because another Twitter friend brought it up), I am all for short/long-term disability through work that you paid into through your employer and are due – that’s another form of insurance and you did a very good job planning to get that. I was ineligible when I applied, so that’s my own personal bummer.
I have several discussions lined up that I snipped out of this one, so we will be touching more on “being a victim of cystic fibrosis,” “dealing with insurance,” and “internal struggles of self-worth in a world of able-bodied people.”