I am so sick of ultimatums. Guidelines for “my own good”.
Life does not have to be lived in extremes, nor in a constant state of compromise in order to have “quality” of life while battling a significant illness. And I refuse to have my survival choices challenged because I’m determined to make the most of life while also preparing for the end-stage of my illness.
I watched my Mother, denied her social security benefits because she wasn’t sick “enough” and was too proud to go out on short term disability before being approved for long term disability, drag herself to the office in all weather, further harming herself while she, too, battled COPD.
I am also watching a cousin, who has had something like 23 surgeries on a leg after breaking an ankle, battling to continue to work and survive despite being fired while out on disability from her State job (you know, those jobs that are supposed to be impossible to be fired from). Not only did the State of MA terminate her due to internal politics, one week after going out for another repair (vs. amputation of the leg), they also took her 20+ years of retirement benefits and precluded her from collecting social security because she worked for the State. Oh, and one cannot challenge the State’s ruling without the State’s permission, so she’s lost everything and is forced to work part time (the best job and hours she can get) for the State of NH – now forced to stand on that leg for 8+ hours at a time, in an outdoor toll booth, in all weather.
The doc, a world renowned wound specialist at Boston’s Deaconess Hospital, has told her she MUST stop working. She has to get off that leg or have it amputated.
The Social Security administration, however, admonished my cousin for not foreseeing her termination from a job she’d held many years, and told her that they could only give her $683 per month to live on. Money that won’t keep a cat alive in the Massachusetts area. Never mind pay for medicines, doctors appointments and the rest.
So, it is with these worthy women occupying space in the back of my brain that I am seriously struggling with learning from my Mother’s experience (and my cousin’s present struggle), as well as trying to cooperate with my lawyer’s edicts as I figure out how to build my second life, knowing that everything I do is likely to be watched and scrutinized to determine if I’m sick “enough” or not.
Frankly, the latest series of letters has sent me through an emotional wringer. Especially because I was told to shut down all social media accounts and stop blogging.
Mental health vs. Financial health. That’s where I’m stuck right now.
I want to work. I want to have a reason to get out of bed every day. I understand the value of having an occupation and social reliance on my duties in exchange for the freedom money brings into my life. My reality, however, is that my refurbished and much-mended body has betrayed me. I tried keeping up by taking medicines that harmed my body while keeping me able to function short-term, and I accepted the increased risk of immediate death while taking those medications.
But, I also knew that if I kept on working until I was fired, I would not be able to get benefits. Benefits I’d paid into through employment with many companies who used Aetna as their agency of record for dealing with the US version of how to avoid being a burden to society. I wouldn’t be able to get benefits because I’m not yet 67 – the approved age for retirement currently in the USA.
I struggled for almost 2 years before asking the question, “Should I be on disability?” and having my doctor say to me, “I was waiting for you to ask.”
Clearly, there is a huge breakdown in determining who is and is not qualified for disability. And, the heroic stories of AMAZING PHYSICAL FEATS that others, more visibly handicapped, have accomplished don’t help me in dealing with the mental challenges involved in ASKING for Disability (shame, failure, exhaustion – you name it) and awaiting the final decision.
The latest well-meant piece of advice (the ‘edict’) from the lawyer has raised a host of new issues the more I read his recommendations. The “Activity Advisement” letter has scared the crap out of me – and I’m a seasoned professional, well-versed in lawyerly what-if’s and worst-case-scenarios.
In particular, I’m struggling with my compelling need to go check on my Aunt each quarter, and the edict which prevents traveling. Basically, the upshot of the lawsuit, “Jenkins v. Price Waterhouse Long Term Disability Plan, LLP” says that if he was well enough to travel to London (my next bucket list item), even though he got sick while traveling and had to cancel the trip, then he was well enough to go back to full-time work.
In my case, I hope to be able to return to some sort of work once my disability has been documented and established. I was clear to ask my employer for part time work or some sort of accommodation before being put on short term disability, and I stand by the fact that going on disability was my worst-case scenario and second choice.
There are too many cases of people who have ended up losing everything because they failed to recognize that they were sick and needed to stop working. Instead, they kept pushing themselves until they were fired. In America, being terminated for any reason means being cut off from the benefits they’d worked for and paid into. My health is too precarious to willingly step into that abyss.
The biggest challenge on this benefits determination issue is the ERISA benefit ruling that says, if one is unable to earn more than 80% of their prior income in their local work area, then they may be entitled to the benefits they paid into.
I am more than willing to consider going to a rehab specialist if I can get back to work in a supportive environment (vs. a highly competitive one) where any lapse on my part due to lack of oxygen / cognitive abilities for driving or performing my duties is taken into consideration when setting timelines and determining cause for termination. I understand that it’s better to be working than not.
Everything in the case law that I’m reading, however, shows that insurance coverage has become yet another “scam” deal for workers in this country. We pay into the benefits in the hope that we may never have to use them – and, if we have to use them, must not be able to leave our home for any reason other than doctor’s visits in order to be able to collect.
It’s this concept conflict that’s really confounding me right now. I’m sitting here typing. My breath whistling in my chest, and I’m trying to keep a positive mental outlook while also knowing that acceptance of my reality is critical to my mental health. Pushing myself to the point where I have an exacerbation and end up in the hospital or emergency room isn’t in my plans as I want palliative care vs. life-extending care if they can’t fix what ails me.
While I may look like a faker to the rest of the world, I am doing the best I can to make reasonable, well-thought out decisions about how to have my best quality of life. Traveling is part of that quality of life, and being handicapped should not be a reason for not traveling or for denying one their paid-into benefits. I can be exhausted anywhere. And, just like preparing for the endurance necessary to join a friend for bowling, or to travel to check up on my Aunt, I rest up, take breaks while traveling, and do the best I can to conserve energy while also setting goals for myself that let me remain involved in life.
Just call me flummoxed, however, as I sit here and try to follow the lawyers instructions to stop all use of social media as it can be used against me.
Blogging is also on the forbidden list of advisements for my own best interests… If I give up what amounts to a diary for dealing with this very difficult journey, I just don’t know what will happen to my mental health, already stretched thin as I deal with finances and other health-related worries. My physical challenge says to me, “Do what you can, a little every day, as it’s good for the soul to be out and trying.” However, I sit and wait and hope to get through this nightmare of a physical challenge / emotional challenge / realities of life in very expensive California.
And hope that I won’t mess up my situation further because I’m being stubborn in thinking that my continued mental health is important, too.