I’ve got that the strange kind of contradictory life that seems fairly common for highly-functioning disabled people:
On the one hand, I have written for top magazines and newspapers globally; I have given lectures at some of the most prestigious institutions in the world; I have published two books that are taught throughout the Ivy League and at universities across the country; and I have been a featured expert in numerous film, television, radio, and print media outlets.
On the other hand, I am always either just breaking even financially, living in debt, or on the verge of homelessness, for reasons directly related to my condition of chronic pain:
Over the past decade plus, I have spent over a quarter of a million dollars (ie, enough to buy a pretty house in a nice neighborhood) on my explicit health care expenses. A significant chunk of this sum was for my useless, yet crazy expensive, health insurance. The bulk of it was for the health care that actually worked and therefore was not covered by aforementioned useless, yet crazy expensive, health insurance.
Then we’ve got all the additional expenses that come with naturally managing a chronic health condition, including but way not limited to the following:
- hiring help for things I always used to be able to do on my own (everything from transcribing an interview to scrubbing a bathtub to carrying groceries);
- purchasing computer hardware and software, enabling me to work despite hand pain;
- paying full fare for travel on business trips, instead of getting cheap deals requiring that I sit in a middle seat (hideous pain for hours straight) or fly at a certain time (losing the ticket if my body isn’t cooperating at that moment).
- buying organic, pre-washed, pre-cut, pre-packaged produce (getting proper nutrition while avoiding pain and fatigue that can accompany healthy cooking);
- paying for a cab or rental car instead of taking public transportation
These things add up. In a big, fat, tens-of-thousands-of-dollars-difference-between-living-with-a-chronic-health-condition-and-not kind of way.
And let us not forget the hidden costs, such as running my own business, instead of working for someone else — so that I can set my own hours, work from home, and therefore function despite my disability. Taxes for the self-employed are not a pretty thing, never mind the additional cost of renting an apartment with extra room for an office.
And how many gigs have I been unable to take, as a result of being bedridden from debilitating pain for days, weeks, or months at a time? What’s more, how many networking opportunities have I missed, because my body could not deal with traveling, or because – and here we have a vicious cycle – I could not afford to attend a conference where I may have made connections leading to new work opportunities?
I am now in the throes of putting my engines behind my mind-body media and education company, Dancing with Pain®. The irony is that the chronic pain struggles this company is designed to address are playing themselves out in the development of the company: For starters, I am launching it with no capital, for aforementioned chronic-pain-related reasons.
Second, and perhaps more significantly, I’m having one hell of a time staying on top of everything while also taking care of my body. Last week, I worked 12- to 14-hour days, leaving little or no time to dance or sleep. Of course, my pain levels jacked up as a result, which is completely ridiculous, considering the whole point of the company.
But what else can I do? Our system is set up in such a way that those of us who are living with a chronic health condition, yet are somehow managing to stay just above the water, fall through the cracks. We are not destitute enough to qualify for social services (seriously – to get disability health insurance, you pretty much have to be living on the street or in a drug-infested urban hovel), yet we are not perceived as being financially solid enough to secure key business investments and bank loans easily available to people with capital.
Someone recently suggested that I waitress to make ends meet, during the startup phase of my company. Waitress? With wrist pain, ankle pain, knee pain, and back pain? Sure, I keep my pain levels way down and am highly functional on a day-to-day basis, but that’s specifically because of all the macro- and micro-measures I have taken to live a chronic-pain-and-disability-friendly lifestyle. Pull out any one of the gagillion factors I have carefully balanced, and the house of cards comes tumbling down.
Living with chronic pain, I do not have the safety net I once had – temping as an administrative assistant, waitressing, bartending, working as a clerk in a record shop… All of those options are closed to me because of my condition. In other words, it’s all or nothing. And even with all the accomplishments I’ve got under my belt, and all of the power and privilege that come with them, that is one hell of a scary proposition.