Many of you will know me as the owner/editor/designer of the defunct local music magazine Section M, which ran from 1998 through 2003. Others will know me as the illustrator and designer for Revive Kombucha, Dr. Picnic’s and Time Zone e-liquids, General Hydroponics, the fabulous documentary Turn It Around: The Story of East Bay Punk, and many more projects. Still others will know me as the organizer of Nostalgia Fest, a benefit show series I’ve put on with other great folks, and with Kirsten’s help, which has raised nearly $50K over the years for The Phoenix Theater and other individuals in need.
And now Kirsten and I are the ones who need your help.
I have gone deeply into debt supporting Kirsten and paying for both of our medical issues, and we are nearly out of options, about to lose everything.
We are raising $35K (or more, I hope) to help:
· Stave off the immediate emergency (losing our rental house and my business)
· Pay Kirsten’s portion of expenses until we can get permanent help
· Fix Kirsten’s car so she can drive herself to doctor’s visits, and contribute to household errands when she is able
· Pay for tax preparation assistance to erase Kirsten’s unfair tax debt, and hopefully retroactively qualify for CA Disability
· Dig us out of debt to buy time for the battle for Disability coverage (best case scenario: 2 years before she sees any money), and for my business to grow enough to support us permanently
Thank you so much for your help. We literally won’t be able to do this without you.
Kirsten lives with an under-diagnosed form of Dysautonomia called POTS. Disautonomia means that her autonomic nervous system, the part that should control the automatic stuff like digestion, heartbeat, heat regulation, balance, and more, is broken. This results in rather horrific digestive pain and gastroparesis (literally gastric paralysis), overwhelming nausea, heart palpitations, near-constant levels of vertigo, extreme fatigue, muscle weakness, joint pain and hyper mobility, and migraines. POTS, which stands for Postural Orthostatic Tachycardia Syndrome, specifically means that changing positions too quickly can make her heart rate shoot up, while her blood pressure plummets, resulting in passing out. The reality is that she often spends more than a week at a time doubled up with pain on the couch, shaking with tremens. She also needs a cane to get around, and usually uses a walker to go out, the few times a month she is able.
Dysautonomia/POTS is not well understood – it’s still considered “idiopathic” (meaning unknown cause) and a “syndrome”, which in medical terms means “we know these symptoms tend to cluster together into this thing, but we have no idea why, or how to cure it.” This means it’s a chronic condition at this point – there is no cure, only attempts to treat the symptoms. And that’s something that medical science doesn’t really understand how to do for this syndrome.
It’s not necessarily a rare disease, but most doctors don’t appear to even know what it is. It’s often misdiagnosed as other things, or ignored and shamed by ignorant MDs. We’re always on the lookout for new research, but right now the important thing is to stabilize our survival so that we CAN keep looking.
Our goal is to buy survival time until we can get federal Disability help for Kirsten, and hopefully other small social safety net help. Because it’s not realistic for Kirsten to be able to reenter the work force, and I have been unable to make enough money to support both of us and our medical issues.
The Disability Battle
So we continue to fight for Disability status. Kirsten filed for Disability 3-1/2 years ago, and has been denied three times, the latest time in her first official hearing. Yes, that’s how long this system takes. We faced off against what is apparently the most biased judge in Northern California, with a lawyer who was mostly out the door to retirement. The unawareness of the disease and the tendency for some doctors to want to diagnose anything they don’t understand as “all in your head” also did not help, and there are a small number of her doctors who have been downright obstructionist in their ignorance.
Her lawyer retired immediately after this hearing, so we’ve been able to secure a much more tenacious representative, and think that our chances are much better on the next round. But the next hearing might be another year out, and is with the same judge – there doesn’t appear to be any way to petition for a different, less biased judge. And then if we do not win there, it might be another two years or more before we can have a hearing with a higher level federal judge. Meanwhile, the system is hoping she will either die or give up.
We have also been unable, so far, to get her California disability, despite years of paying into the system, because her last employer was dishonestly claiming her as an independent contractor, but treating her as an employee. And nobody notified her of the requirement to pay into an optional fund to still be eligible for CA disability. We are currently trying to rectify this, but the legal representation and professional tax help required costs money, and is slow going. Also, retroactively re-qualifying for that disability benefit is far from a sure thing.
Michael’s Support and Health
So, since mid 2014, I (Michael, the boyfriend) have been supporting both of us through a couple moves (despite being model tenants), the growth of my business, several emergencies, and our medical issues.
You see, I’m not particularly healthy either. Both of our genetic lines were clearly bred for intelligence and wonderful eccentricity, but not particularly for health. It’s something we bonded over early on, when I was the less healthy of the two of us. I live with chronic exhaustion, serious brain fog, memory loss, and headaches, heat regulation issues, and my own intestinal adventures. Recall if you will, what you feel like when you’ve barely slept in two weeks and have a hangover – that’s a good day for me. Some causes are diagnosed – I have mid-level sleep apnea, which is partially treated but hasn’t been able to be completely controlled – and some are undiagnosed (I believe), such as the underlying cause of my own cluster of symptoms. But I’m able to work, and though I feel like crap ALL the time, I’m able to do what I love for a living.
What I love is design and illustration, and that’s what my small company Designed by Monkeys does. I love my clients, and I love the work I do for them, and besides homelessness and letting Kirsten down, my greatest fear is losing my business and clients because of money problems caused by this ongoing emergency. The business has been doing quite well, and most times has been pretty profitable, but not enough for our costs, no matter how frugal we have been. I have a great roster of clients, but this year has also been a rough one.
Toward the beginning of the year, my own health gave out from nearly three years of overwork, and I had to take a break and work at a slower pace for a couple months. This was followed by an unplanned move (so that the landlord could charge more rent), and an unplanned office move, all of which took away from working time, cost money, and drained our energy. And then for the second half of the year, work slowed WAY down – all for different reasons, and none of it because of me, but the result was just less work. Then the devastating North Bay fires lost me a week of work, added to our health and stress problems greatly, and indirectly slowed work down again, just as it was picking back up.
And that means that there’s been a constant deficit, sped up a little this year, since the time Kirsten stopped being able to work 3.5 years ago. I’ve run through $25K in savings, and gone into debt another $30K in non-business debt, as well as another $20K in business debt that likely would not have been needed otherwise. The part that is TERRIFYING is that I think I’ve run out of credit/loan options, meaning I’ll soon be out of money options entirely. That could mean losing our rental, me losing my fabulous second in command designer/unicorn (without which I’m not sure I can fulfill client needs), and possibly losing my clients. And none of that is fair to what is actually a successful business, and which is my only way to dig us out of this.
There’s also a great fear of mine that if I keep going this hard, my health will collapse again from the physical and mental stress, and we will lose everything that much faster.
The good news, though, is that business IS picking up now. In fact, there are HUGE projects on the horizon, and I have projects booked out an entire year. But that money will not come in fast enough, and despite being profitable, it likely won’t be enough to undo the financial damage of the debt from the last 3-½ years. HOWEVER, with your help, my business will hopefully survive and thrive, which eventually gets us back to stability again.
As I have said: we are pursuing all kinds of other help as well, and don’t plan to stop. But those things aren’t going to be enough to save us in the short run.
The first goal is to relieve the immediate financial pressure of upcoming bills and crushing debt, and make sure we don’t lose what we have. Every little bit helps with that. But we need at least $10K to get some breathing room.
Ongoing funding will likely be needed in the short run, too, so that Kirsten’s portion of bills, rent, and food can be covered, so the debt doesn’t just re-accrue. Right now, that’s about $1300/month. This is needed until we can get some form of permanent help.
We also need to make sure that Kirsten’s car continues to run so that she can drive herself to doctor’s appointments. The minimum for this is $800. More would be amazing.
The best outcome will be for an additional $20K to come in, to pay off personal debts, so that we’re no longer losing money to interest, and to give me the physical and emotional space to continue to grow my business enough to fill the money gaps until we can get her permanent Disability help.
But as I said: every little bit helps. And we are incredibly thankful to everyone who has helped us make it this far, and everyone who might help us in the future.
Thank you all.
- Kristen Spensley-Harding
- Joshua Simmons
- Kris Martin
- Jeremy (JVP) VanDerpluym
- Corbett Redford
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