Today’s Daily Prompt: Cake
I’ve been struggling mightily with the powers-that-be who wish to define me with their own version of handicapped. Incapable. Invisible. Irrelevant.
It was with reluctance that I began exploring the cause of my multiple car accidents, and the related safety issue for myself and others, with the end conclusion that I should be on permanent disability. My numbers were below the federal disability level for being able to breathe, and my pushing myself was like giving a drunk driver the keys and telling him or her that they were ok to drive. Crazy.
Having been through this journey for the past year, I’ve come to the conclusion that I’m dealing with a Marie Antoinette-wannabe in the shape of my HR department (employer), as there is no way for me to find a path back to work that is practical for both myself and my employer with their current “where’s the wheelchair? where’s the seeing-eye dog?” mindset that I must be goldbricking.
While I have been resting and doing what I can to rebuild my reserves and avoid exacerbations as COPD continues to throw me curveballs, the reality is that I went off work with a breathing capacity of 31-32% of normal capacity, and as of now, I’m down to 26% capacity. Not good. Especially not good when one realizes that is in the Summer, when I’m at my best because the weather is at its driest.
When contemplating the whole question of quality of life, options to figure out what I *can* do in a sustainable manner, endurance, and related exhaustion, the reality is that there is no clear guideline. I need my employer to truly work with me to explore options and set reasonable expectations about what I *can* do to work for them, vs. simply being told that I must “find my own solution”, or quit.
I’m stuck in the middle of a lawsuit with my employer, because they refuse to pay me the matching salary benefits I’ve paid into. While I’ve launched a lawsuit for improper treatment about paying out my benefits, the reality is that is a whole lot of trouble, and things would be easier if they were really invested in having me find a way to return to work. Part time. Flexible hours.
Something that accommodates the fact that I don’t fire on all cylinders when I’m not getting enough oxygen.
Something that would pay me the matching salary benefits so that I could try the stem cell treatment and see if it would enable me to return to full-time work.
You know, all the things the matching salary benefits were supposed to make possible, if one were disabled while working for this employer.
While I can color my hair and update my wardrobe to hide the ravages of time that impact everyone, at some point, regardless of their level of health, the reality is that COPD comes with serious underlying complications that impact each of us differently every day. And which get worse as one ages.
In my case, its energy levels. Lack of 100% oxygen saturation means that I deplete my energy over a period of 2-4 hours, and then am in pain if I keep on pushing myself, and also need a nap. The need for a nap becomes more urgent the longer I put it off, and it then becomes a safety issue if driving is involved.
Co-morbidity with diabetes being a complication of my COPD medications means that mainlining sugar or carbs (a candy bar, a soda, a donut) to give me an instant energy hit, just takes away my ability to think clearly and drains my energy that much faster.
While protein is a solution to the energy drain, that’s also more expensive than a simple candy bar or carb, and we’re back to looking at my budget and lifestyle choices on my now limited income.
Because I’m not being paid the additional benefits promised, I’m stuck moving further away from my job site in order make the money I’m receiving from Federal Disability stretch to survive and keep a roof over my head on the limited benefits I’m being paid (and which move shouldn’t be an issue for a global company, but is very relevant when they insist on butts in chairs for some jobs).
Because I’m moving into the boonies, it also means that cerebral jobs which pay well are scarcer than hens teeth, and pushes me back into the challenges of trying to do a minimum wage paying “physical” job which will deplete my energy faster than a seated job. As I’m reading about my ability to work options, it also seems to indicate that I may be “abandoning” my job by moving someplace cheaper in order to survive. Another loophole that I don’t want to even consider as I try and endure my current reality and find solutions if my lawsuit isn’t won.
I’ve been looking at FlexJobs, Ticket to Work options, and everything related to “recovery”, all the while knowing that I will never *recover* from my disease. COPD stage 4 is an end of life situation. While I still have plenty of life left in me, as long as I can keep from triggering an exacerbation, the reality is that my quality of life will continue to degrade.
Employers are supposed to offer “accommodations” to encourage workers to remain on the job, or to encourage disabled workers to apply for employment. However, the fine print in that statement is that the “accommodations” only have to be made so long as they don’t impact business operations for existing employees. If they cannot do so, i.e., such an accommodation may come with a financial or liability risk, then the employer doesn’t need to make any accommodations at all. That’s where I’m at in terms of trying to figure out where my life takes me next in this adventure to survive.
Not quite handicapped in a definable, quantifiable, easy-to-fit stereotype so that anyone can understand what I can or cannot do, I linger on the sidelines, wanting to work, have relevancy, and improved financial stability. Malingering, in some eyes, because I’m successful in staying out of the hospital, but not well enough to at work, and labeled as too young to retire. 42 years spent working is irrelevant when one is neither fish nor fowl for being able to be categorized, packaged and resold for the benefit of both society and myself.
So, I thought today’s prompt was very appropriate, “Cake”, as I’m dealing with the realities of not having enough bread and being chided for ignoring the cake that I don’t have, either. Crazy, crazy, crazy.