Community Fundraisers: More Than Shelter, Home

Photo copyright Wings, 2014; all rights reserved.

It's a basic human need: Shelter. 

A roof over your head; a floor under your feet. A place to be safe from the elements.

But it also needs to be liveable. And accessible. And those words mean something very different for a healthy, fully able-bodied person than they do for someone who must live with multiple disabling conditions all day, every day.

Most Kossacks already know BFSkinner. No, not that B.F. Skinner; our BFSkinner. 

He's been a member of Daily Kos for about six years now. He's a member of a great many groups and subcommunities there: part of various groups organized by and for Jewish Kossacks, an active member of the LGBTQI community, a participant in various arts-related groups, just to name a few. He's famous for his regular series of community-building diaries, in which he invites Kossacks to explain an aspect of their identities; name a favorite song or movie in a particular sub genre; or otherwise offer up a bit of themselves for inclusion in this wild and wonderful community that the other side loves to deride as the Great Orange Satan.

He's also brilliant: a Ph.D., and, like his namesake, a psychologist.

He's also battling a complex cluster of disabling conditions on a daily basis.

The last several years have seen major upheaval; he's had to move several times to accommodate his medical conditions. His most recent move was to an apartment with a roommate, in what seemed like an ideal situation for them; instead, it's turned into a nightmare that is causing grave risk to his health and his very life.

He has an opportunity now to move into an actual house — not merely shelter, but a home. It's a very good deal; it will work out well for him and for his landlords, who are old family friends. But making the move will require more money [first month's rent for the house, one month's rent as penalty for leaving the old apartment before the expiration of the lease, and assorted utility deposits and hook-ups] than he can scrape together on his disability income. And he has only this month — March — to make it happen, or this chance will be gone.

That's where we come in.



First, though, let me give you a little background on what BFSkinner's been battling for the last several years. Whatever your own living and health situations, it's likely to give you a newfound appreciation for your own blessings. It certainly has done that for me.

SYSTEMIC LUPUS ERYTHAMATOSIS (SLE OR LUPUS)

Systemic Lupus Erythamatosis (known as SLE, or, colloquially, simply as "lupus" for short), is an autoimmune disease that is itself a complex cluster of symptoms and side effects. It's one I wind up being tested for every few years, because too many of my own conditions are similar (and I have a medical history that makes me predisposed to it); unfortunately, there is no single test, nor single result, that can say definitively that someone has lupus. It often winds up being a diagnosis pieced together over a very long period of time from a wide array of seemingly unconnected bits of evidence. Too often, by the time a person receives a definitive diagnosis, significant damage has already been done — and not merely to the body, but to the finances and the spirit, as well. 

Like all virtually autoimmune diseases, those symptoms and side effects vary widely with each individual: they range from the mild and eminently manageable for some to the disabling and downright dangerous (as in life-threatening) for others. BFSkinner was diagnosed with SLE in 2006, at the age of 36, and his case falls on the latter end of that spectrum.

And as with other autoimmune diseases, it's chronic; there is no cure.

If you're not familiar with lupus, here's how the National Institutes of Health describes it:

Lupus is one of many disorders of the immune system known as autoimmune diseases. In autoimmune diseases, the immune system turns against parts of the body it is designed to protect. This leads to inflammation and damage to various body tissues. Lupus can affect many parts of the body, including the joints, skin, kidneys, heart, lungs, blood vessels, and brain. Although people with the disease may have many different symptoms, some of the most common ones include extreme fatigue, painful or swollen joints (arthritis), unexplained fever, skin rashes, and kidney problems.

It is most common in women, particularly women of color. BFSkinner drew a hand that's very unusual, and very difficult. In his case, it's adversely affected both his neurological system and his cardiovascular system.

VASCULAR DEMENTIA

One of the common secondary effects of lupus is its cognitive impact. For some people, the impact is relatively mild: occasional brain fog, difficulty concentrating, some difficulties remembering things, along the lines of drawing a blank when trying to call up a word, phrase, or image.

For others, it's devastating.

Lupus can have serious degenerative effects on the nervous system. In one of its crueler manifestations, it can cause a condition called vascular dementia. The Mayo Clinic describes it as follows:

Vascular dementia is a general term describing problems with reasoning, planning, judgment, memory and other thought processes caused by brain damage from impaired blood flow to your brain.
You can develop vascular dementia after a stroke blocks an artery in your brain, but strokes don't always cause vascular dementia. Whether a stroke affects your thinking and reasoning depends on your stroke's severity and location. Vascular dementia also can result from other conditions that damage blood vessels and reduce circulation, depriving your brain of vital oxygen and nutrients.

BFSkinner was diagnosed in 2010 with vascular dementia secondary to SLE. He wrote about the diagnosis, and the fallout, here. To call what he describes facing on a daily basis "daunting" is an understatement:

I have the second most common cause of dementia, vascular dementia, which accounts for about 17 percent of dementia cases. Vascular dementia is due to impaired oxygen to different parts of the brain. Most of the problems I have are in the parietal lobes at the moment, though I do have difficulties in other areas. My problems focus in on:
1. The ability to learn new information. I’ve no problem at all with long term memories and long term learning. Stuff I knew from long ago, from my Ph.D. days I have no problems with. Want me to learn something new? Forget about it.
2. Spatial learning. I have great problems detecting what comes next in patterns, even finding patterns.
3. Short term memory in general – if you give me a list of stuff to memorize I can only get a few parts of it. If most people are given a list they can keep looking/studying the list and over time and multiple looks at the list learn more and more. I only seem to learn as much as I am going to get after two or three times. Whatever I get after these times is it, I cannot learn any more.
4. Eating and medication taking and other day to day living stuff has been impacted: I know I "need" to eat, take my meds and stuff, I want to, I can set alarms to do so, but...I just don’t. Why? Clark Hull would say "my drive" is gone, I would say "I do not have the initiation" ....it is not that I lack motivation...I know I need to do so, I am motivated to do it, I just.....ugh, I just do not do it.

There's more, much more, at the linked diary. You really should read it. But it's not all of it — not by a long shot.


CARDIOVASCULAR EFFECTS

Lupus can also have severe cardiovascular effects. Some of the same genetic predispositions implicated in lupus are thought to be at play here. In addition, the inflammatory response involved in the disease, and in its effects, is well-documented as having adverse cardiovascular consequences.

But a heart attack when you're 38?!

Yes. That's how old BFSkinner was on the night in 2008 when he awakened to the sensation of someone sitting on his chest. He was having a massive heart attack — the result of genetic factors coupled with the lupus and missed doses of Coumadin (a blood thinner). The missed doses were purely a product of the cognitive deficits caused by the lupus.

Fortunately, he had a roommate who was able to call 911 for him. But it became clear at that point that he could not live alone any longer.

A heart attack at 38, even with SLE and other genetic factors, was sufficiently unusual that BFSkinner's case became the subject of a 2010 article in the American Academy of Neurology's publication, Neurology Now. It's not very long, it's written in lay language, and it's worth reading to help you understand the ins and outs of "neuropsychiatric lupus," which is the article's term for the particular group of SLE symptoms and effects that result in both cardiovascular events and cognitive impacts like the vascular dementia. It also opens with a handsome photo of our own BFSkinner.


WHY ALL THIS MATTERS

Obviously, disabling conditions cause great financial strain anyway. But there's more to it than just the limits to one's income and the expense of daily existence. Living conditions — accessibility and a lack of triggers of symptom exacerbations  (also known as flares) — become crucial to survival.

And in BFSkinner's current housing, that's a real problem. On both counts.

I'm going to let him tell you what he told me:

We found a perfect place on the 4th floor, the unit is right across from Providence Hospital which [is] where I go for most of my med appointments and for my surgeries and the like, so the location is very good [from] a med perspective, and is ½ way between where friends live . . . and ½ way between where relatives live . . . . [S]o needless to say the location was very good, and the place looked like it was on the up-bound and the rent was good and for a 2 bedroom 2 bathroom it had a huge amount of space. So we picked it. Unfortunately things fell apart rather quickly.

There started to be trash everywhere in the hallways, and signs went up in the elevators about people urinating in the elevators and the laundry rooms, etc. At first the elevator would stop working maybe 3 days a time every month or so, then 3 days every couple of weeks, now it works 3 days every couple of weeks if we are lucky. The problem is living on the 4th floor. Going down the stairs is not the problem, the problem is coming back up them. Having had my heart attack and with all the other health conditions that I have makes this an arduous activity, I have to stop between each floor and going up the whole way takes forever. When asked about fixing the situation management says "they’re working on it" [emphasis mine].

Now, the urinating on the premises is bad enough. I can attest to the toxic adverse effects things like human urine can have on people with chronic inflammatory and autoimmune diseases. Forget the sanitary risks; just the smell is enough to set off a massive flare in a lot of people. But that might be manageable.

A non-working elevator is not.

BFSkinner's physical activity must be limited: first of all, by the SLE itself and the painful inflammatory conditions it causes. It's limited by strict medical necessity because of his heart attack. He cannot walk up four flights of stairs on a regular basis.

This is now a matter of simple survival. He has to get out of that apartment.


And again, that's where we come in.

HOW TO HELP

What we need to do is raise $2,200. That covers the $800 fee the current rental company is charging him to get out of the lease; $800 for the first month's rent in the new house; and $600 for utility deposits and connection charges in the new house, any incidental "fees" or penalties the rental company might suddenly "discover," and maybe even a tiny bit left over for food for himself and the pootie overlords.

If you can afford to donate, you can do so via PayPal at this e-mail address:

Houstonbfskinner [at] netscape [dot] net 

If you can't afford to donate, please share this post, and his PayPal address, with all of your networks, both online and in real life.

This is one of those rare instances where every dollar counts, and where it might actually save a life: more, the life of someone we know and love and need as a valuable member of this community.

And, as always, chi miigwech from me personally for whatever help you're able to give.