I finally heard from vocational rehabilitation services about my application to open a case. It’s been about a month and a half since I applied. To be honest, although it sounds like I’m impatient, I expected it to take this long. There’s a huge backlog at rehabilitation services in Kansas. It shouldn’t be that way – but the problem isn’t the poor folks working on the front lines with the huge case loads. It’s the lack of support from the bigger system. But, that’s another blog entry.
My county doesn’t have a Services for the Blind counselor. Evidently the post was vacated, and no replacement has been hired – thus I have a counselor from a neighboring county. He told me on the phone he’s had a flood of new cases. Given the state of the economy, I’m not surprised.
We have a meeting set up for December 19th. Besides bringing all of my medical and financial details, I need to arrive with some sort of plan, a vocational goal (or at least some ideas) in mind.
I’ve always been a driven person with very specific goals. Now, I’m lost. I’m sort of floating out here, and besides the economic uncertainty, beginning to enjoy not being stressed out to the hilt at every moment of my life.
A person named Kitty Kelley once said, “Once I decide to do something, I can’t have people telling me I can’t. If there’s a road block, you jump over it, walk around it or crawl under it.”
At the risk of sounding conceited, that’s pretty much been my philosophy in life.
When I decided to study journalism, I had a LOT of critics. There was no shortage of people telling me I was making a poor career choice, especially for a blind person. And roadblocks – there have been many. Some have been professional, some vision related and some health related. No matter what I’ve found a way around them every time until now. In the end it wasn’t really my vision that did me in – it was all the other perks of my HPS life.
Now my world has been shaken a little bit. I’m uncertain of what is reasonable to expect of myself. I’m also uncertain about what sort of life I’m willing and/or able to lead.
Don’t get me wrong. These developments have been a positive thing (even though they’ve been very financially painful) in that it’s given me a chance to reinvent my life – to have a second chance, sort of speak, at something new.
But there are so many practical things to take into consideration. What is a profession that will accommodate my absences for the drug trial well? What about the days I have to go home early because my ostomy is leaking? What about the days I spend at doctor’s appointments? What about just getting the run-of-the-mill stuff everyone else catches and takes off work to get over? Oh, and what will accommodate all of this and still allow me some time off now and then? My co-workers all get to take vacations to relax, recoup etc. I haven’t been able to do that for years because of my medical needs.
I know now that these medical absences – often unexpected – are not terribly compatible with constant daily deadlines and a small staff where there’s no one to fill in for you.
What profession will allow me the flexibility to have a bad day when I can’t concentrate because an HPS’er has passed away? Or any of the other many mental distractions that go on when you live actively in HPSland?
Then there’s our country’s down right wacky system of handling disabilities. I’m applying for long-term disability. These problems, even if I’m able to identify such a career and get retrained, aren’t going to be solved by Dec. 14th when my short-term disability benefits end.
I’m also applying for SSDI.
There is no way that I can afford to pay about $500 in COBRA for my health insurance, plus the copays of my insurance. Most of my medications (14 right now, 10 daily and four as needed) run about $40 a script. Then there’s CPAP and ostomy supplies. Then there’s doctor’s appointments. Yesterday’s visit to the dermatologist cost $40 (a specialist you know) plus $25 cab fare. It would have been $50, but I got lucky and had a friend that couldn’t take me, but could pick me up.
This all means that I’m going to have to empty my 401K (if there’s anything left in it with the current market conditions) so that I can get my assets under $2,000 so that I can qualify for Medicaid.
How crazy is this? We make people become dependent on “the system” to survive.
If I get SSDI, and am on it for two years, then I’d qualify for Medicare. I’ll still have to buy a supplemental policy, but Medicare covers lung transplants. Medicaid in Kansas, as far as I can tell from my research, does not.
If I manage to get through all of this, do I really want to start a new career only to have to go through all of this again? Right now, even with the drug trial if it works (and I think it does) – it’s a matter of when, not if, I get sicker. Do I want to risk going through all of this with the system sometime down the line when I’m even more sick? Do I want to work night and day to build up savings, to do without a lot of things to have savings, just to have it pretty much eaten up again just to qualify for needed programs?
On the other hand, long term if I get on SSDI, I can eventually work part time without losing benefits. If you ask me they should structure SSDI more like SSI so that if you make more than the magic qualifying number one month, you’re benefits are proportionally dropped rather than risking losing everything – medical and financial – because you went a dollar over some government-set threshold.
In a day and age when technology is allowing people to do so many creative things with employment set ups, we should stop thinking of disability and work as an all or nothing concept. We should encourage people to be creative and allow them to strive to their highest potential, rather than clipping their wings by placing these sorts of limits on earnings.
I’m not saying you should be able to get SSDI and make tons of money besides – I’m just saying there’s a big jump, especially for someone with chronic medical issues, between making $1,501 and losing all benefits, and actually finding a job of equal earning potential (by the time you combine the maximum earning allowance with the benefit) that also has the necessary medical coverage. Throw in needed flexibility as I need and well, it’s even harder.
And the situation is marginally better for those of us that are legally blind in this system than it is for others – our earnings allowance is higher.
But going this route, once I hopefully qualify for everything, is like taking a vow of poverty. I feel like I’m agreeing to never really have anything much.
That seems so unfair.
But on another level, how much does that matter? Is that about my ego, or not?
Bordem is not a problem for me. I have so many things I love to do, like painting, writing, working for the Network – all of which I couldn’t do while working because I didn’t have the energy or the eye stamina to do both.
Here I’ve worked so hard for a decade – sometimes working two or three jobs – and who really cares? The magazine goes along without me. No one ever once said thank you for all the time and effort – for the weekends you spent working to catch up etc. No one from there is going to sit by my bedside when I’m sick.
My local support system has fallen apart because friendship actually means staying in touch with people. I’ve done a horrible job of that. I was always so tired because work was all I could do that I’ve lost track of so many people.
My work in HPSland, however, is always appreciated even when I don’t get everything done. It has a real impact on people and they remember it. It makes a difference. And somehow isn’t that more important in life than finishing the race with a bunch of money. (Knowing full well that even if I made a lot of money, it would be sucked up by medical expenses anyway in the end.)
I’m a type A personality. No matter what I do I need to commit to it 100 percent. I have to get a sense of achievement out of it. I have to have a sense of professionalism about it.
This all is another one of those roadblocks in life. Am I being true to myself and finding a way around it, under it, or over it – or am I being stopped in my tracks? Is accepting the SSDI path giving up on “normal life” or is it a fair, responsible and respectable alternative that would allow me to live a potentially more satisfying life, even if it is fraught with economic struggles?