Finance Based Health Choices

But, what if you don't have either...?

But, what if you don't have either...?

I’m quite privileged in the area of health care. For my entire life, I’ve been able to participate in private health insurance — health maintenance organizations, to be even more specific — and never have had to make decisions based on finances.

The first time it even affected my life was when I was 29 years old. My daughter, Joli, had just been diagnosed with cancer, and we were faced with an $88,000 surgery to remove her right eye. Her eye had been destroyed by dozens of tumors, and each day brought the cancer cells closer to her optic nerve. Her surgery was an emergency; we had no idea we were going in to the doctor for a cancer diagnosis. In fact, we thought she was going to just need glasses.

Due to a mix up in paperwork, we found ourselves at the hospital with no health insurance coverage. The paperwork was never sent in by my husband’s Human Resources representative, despite the fact that he had already been working at his job for more than 6 weeks.

“You need to pay $88,000, sir,” said the medical billing representative at the hospital, “in order for us to operate on your daughter.”

“I have $20. Is that enough for a down payment?” begs my husband.

“No,” insists the biller. “No, it’s not.”

My husband was begging for my daughter’s life in this office, while I was praying for her life in the entrance to hospital room.

There was a moment when I wondered if we would be able to go through with the surgery. Family members began to silently calculate the amount of credit they each had available on their credit cards; not enough.

Thankfully, my husband’s employer realized the dire state of my daughter’s life, and personally drove to the hospital with proof of medical coverage. And, as soon as the paper touched the Biller’s hands, the surgery was approved. Joli would live.

At the time my husband had completed his paperwork (6 weeks prior to our incident at the hospital), he had signed up for the “Best of the Best” insurance plans. I remember arguing with him at the time that it wasn’t necessary. “We never get sick,” I remember saying to him. “That plan is a waste of money! Highway robbery!”

Because of the purchase of the premium health plan, we were mostly covered by our insurance for my daughter’s enucleation (removal of her eye), her prosthesis, and the months of chemotherapy, MRIs, CT scans, injections, etc., etc., etc. We did have copayments of $250 a month, yet that was nothing compared to the thousands of dollars that were billed each month to our insurance. We did not have to worry about financial choices, we simply took care of our child.

Four years later, I’m finding myself making health choices based on finances again. I recently went in for some dental work, and my dentist made a mistake. Nothing to lose sleep over, but a mistake nonetheless. I had already sunk hundreds of dollars toothinto this dental work, and we were reaching that threshold — the point at which I need to make decisions like, “Can I get gas this week or will I have to pay more for dental work?” type of decisions.
When I called the specialist that the dentist referred me to, I asked about the price. “How much is this going to cost?” I asked. “Twelve hundred dollars,” says the kind voice on the other end of the line. “Very funny,” I responded.

There was silence on the other end.

“Wait, you’re not joking, are you?” I asked in obvious disbelief.

“No, ma’am. Sorry. It’s $1200.”

“Right, that’s before you bill my insurance, isn’t it?”

“Actually, no. If your other dentist already billed for the first procedure, then you will have to pay out of pocket for this. It would be $1200.”

WTF!! You gotta be F-ing kidding me with this BS!! Thanks for that information! Is there a cheaper way to do this?” I asked politely.

“Sure, we can do some of the work, and then you can go back to your dentist to finish it.”

“You mean, the idiot dentist that botched this up the first time?”

“Exactly,” says the voice on the phone. “If you do it that way, then the procedure will only be $200.”

No brainer, I thought. I have to go back to the original dentist. I don’t have an extra $1000 just to slosh around.

Now, I know that this dental work is necessary. I definitely put off some of this work for far too long. I can explain it away — got wrapped up in a new job, got pregnant and had to avoid x-rays, was busy with the newborn, work got busy again, etc. But, the truth is, I just can’t financially afford to do it right. I can’t afford to go to the specialist who would fix this problem. I am left with no other option than to go to the same dentist that messed it up to begin with, leaving me nervous about a repeat mistake.

And, yet, I’m holding a lot of privilege here. Why? Because even though my out-of-pocket is a lot of money, it’s still hundreds less than if I didn’t have insurance. Also, I actually had the privilege of routine dental care that would have been covered, and instead wasted my premium payments each month and put myself in this situation. I’m privileged because so many people don’t even go to the dentist because they can’t easily take off during work hours to seek medical attention. Others avoid treatment because of the cost. And many already have it so bad that the best option is just to let it get worse.

These are just a few reasons why I believe health care is a right, not a privilege. I take responsibility for the fact that I didn’t go and see the dentist sooner. Instead, like many, I waited until it got unbearable. My fault. Yes.

Yet, I don’t eat sweets all day. I brush 2-3x a day with the proper brushing technique — which few people do these days. I floss after every meal. I flouride rinse. I don’t drink soda or sugary drinks. I don’t chew sugary gum. I am a model-dentist-patient. And, yet, beyond my control, for whatever reason, I am prone to cavities. It’s always been that way. My genetics? My biological make up? Something that I just can’t alter….

A health care option for all means that we, as a nation of people, can avoid having to make life or death decisions simply based on finances. It means that everyone has a right to be healthy.

I know too many cancer families who have made decisions based on finances: Can we afford to buy the injections to increase white blood cell counts? Do we stay in the hospital an additional night or try and prove we can leave a day earlier to avoid paying another night? Do we purchase the food that would help us get better (organic, healthy, vitamin packed food), or do we have to purchase pre-packaged, dried food because they are cheaper?

And, if it helps you imagine this — we’re not talking about people who have “chosen” a risky cancer lifestyle (smoking, etc). Much more common are people who have been diagnosed with cancer despite an incredibly healthy lifestyle.

So, what is the solution? We make choices based on finances all the time. Yet, when it comes to health and treatment, should we have to make health choices based on finances?

Changing the Complexion

A little too mad to even respond to this one, so I’ll just do blips.

I think it’s one thing to do racist stuff to adults, it’s another thing to make kids the subject of one’s racism and stupidity. This story is going viral, so if you haven’t checked it out, here it is.

More than 60 campers from Northeast Philadelphia were turned away from a private swim club and left to wonder if their race was the reason.

See, white kids never have to wonder if a negative behavior is attached to their race. It’s called white privilege….

“When the minority children got in the pool all of the Caucasian children immediately exited the pool,” Horace Gibson, parent of a day camp child, wrote in an email. “The pool attendants came and told the black children that they did not allow minorities in the club and needed the children to leave immediately.”

Except for the fact that the day camp PAID to use the facility for the summer, was accepted to do so, and entered into a contract with the Valley Club. So, yes, they were allowed to use the pool. And, if the white kids didn’t want to swim with them, that was THEIR CHOICE. But, instead of stating it was a choice, the white parents/children instead decided to remove themselves from an uncomfortable situation and just deprive another EQUAL paying customer the right to a service.

After being told the Club would refund their money…

“I said, ‘The parents don’t want the refund. They want a place for their children to swim,'” camp director Aetha Wright said.

They just want a place to swim. Jeez, really, people? Are the club members working on old school racism that the black kids might a) pass on cooties, or b) steal something from kids in the pool (perhaps their shorts? I dunno?), c) act like… kids?

While the parents await an apology, the camp is scrambling to find a new place for the kids to beat the summer heat.

And, that’s what white privilege does. It puts white people ahead and POC behind. So, while the white kids get to just sit back, relax, and enjoy their summer, the black kids have to scramble and find something to do. Next thing you know, you’ll hear from white people saying “I can’t believe all these Black kids are out on the streets. Don’t they have anything better to do?”


A New Approach

I recently found out that I have a medical condition that could cause tumors in my spine. Yeah, it’s pretty bad. The funny thing is, though, that I’ve apparently had this medical condition from the day I was born due to a genetic condition that I was completely unaware of all these years. There are a whole host of other symptoms that go along with these spinal tumors, too — brain tumors, retinal tumors, etc.

spineSince finding out, I’m noticing my body feels different. I’m feeling aches in my spine. I seem to have a mild headache that won’t go away. My vision has been blurry. I have noticed that my foot gets numb on occasion. God! Have I made it all these years with nothing, and now that I know, are all these problems from this medical condition? Just a few weeks ago, my “aching muscles” were likely a result of the 3 mile hike I went on with my family. My headache – probably from the caffeine I’ve been drinking to keep from falling asleep after a disrupted night. My vision – likely that I haven’t seen an eye doctor in about 3 years. My numb foot — yeah, I probably just sat on it too long.

But, with this new information, why is it so hard to ignore the medical condition to explain these aches and pains?

So, why is this on To Loosen the Mind, and why does it get me thinking about race and racism?

Learning this new information has made me incredibly uncomfortable – physically, mentally, and emotionally. In this waiting period between now and my full body MRI in a month, I feel rudderless. I feel like the rug has been pulled out from under me, even though, essentially, the rug was never there to begin with. I know that once I meet with my doctors — the “experts” — I’ll feel better. I’ve slowly started to connect with other individuals who have the same condition as me, and I’ve begun to learn from them. I’m learning how they cope with the emotional turmoil. How they cope with the barrage of doctors appointments and scans. I’m learning how they keep positive despite the fact that they we will always be screened for tumors for the rest of our lives. THE REST OF OUR LIVES.

I’ve felt this feeling before — this feeling of physical pain, mental confusion, and emotional anxiety. I recall back to when I first started to unpack my own racism. I remember those feelings of being challenged about my learned messages about people of color, about sexual orientation, and about socioeconomic class. I remember being corrected when I made a “ghetto” joke to a brilliant African woman in college. I remember actually arguing with a Black woman that “permed” meant “curly”, and NOT straight like she thought it meant. Because of course, I was stupid right. She was one of the first Black women I had ever met, and yet I was the idiot authority on “perming.”

The more I learned about my own privilege, the more uncomfortable I got. The more I read, listened to, digested, the more I realized I had been living in the dark – void of information. I had an awakening, and that awakening was painful. I sometimes wished I didn’t know about the injustices that other people (including my own) experienced in our not-so-recent past. I wished I hadn’t learned about how families were separated on purpose in order to create and maintain a power structure of superiority. I wish I hadn’t heard about the ways in which men of color are disproportionately incarcerated, beaten, abused by a system that is supposed to protect them.

I imagine that’s what it’s like continuing through life thinking that we are all where we are solely based on merit and the willingness to try hard. It’s so much easier to believe that lazy people stay down while determined people rise up — all of them. It’s so much easier to believe that we got to where we are because of our invididual efforts, and not because of a system of privilege.

I’m still struggling with whether or not I wish I hadn’t learned about my genetic condition. Just a few months ago, I thought all these aches and pains were … well.. aches and pains. In this time between now and my first set of tests, I question whether or not I have a tumor. I question whether or not I have a clot somewhere. I question whether my fatigue is just exhaustion, or if it’s an adrenal problem.

Either way, once we KNOW, we have a responsibility. Once we accept that life isn’t as simple as MERIT, and that effort isn’t as simple as TRY HARD, and that freedom isn’t as simple as FOLLOW THE RULES, then we experience discomfort. If we care, we experience physical pain, mental pain, and emotional pain.

We eleviate that pain by getting more information, by uncovering the truth so that we can work to create a different path and a more realistic set of rules.

I’ll keep you all posted with the medical stuff. As far as the metaphorical stuff, I’m somewhat surrenduring to the pain and the paranoia. After all, it reminds me that there are others who have it both better and worse.

And, part of loosening my mind is putting myself in other people’s shoes.

Presence Does Make a Difference

I often field questions about diversity and inclusion – especially ones like, “Well, why does it matter if a person of color is in my class?” or “What difference does it make if I have a Black professor?” or “Since I treat all people the same, why should it be important that my kids have a diverse group of friends?”

I believe that the presence of people with diverse backgrounds, needs, abilities, etc., changes the conversation and ways we do things simply by their presence. In an exercise I do in workshops, I ask participants to move around a room and talk to a different person every 30 seconds or so.  It requires an ability to physically move quickly AND an ability to filter sounds easily (the room gets quite noisy). Those are just the surface needs. The exercise also requires people to be somewhat extroverted, comfortable with asking un-comfortable questions, and comfortable with answering un-comfortable questions.

The exercise ends without a hitch – usually everyone is feeding off the energy of moving around quickly and trying to get points (you receive points my talking to many people). After asking typical process questions like, “What was this like for you?” or “What was something interesting you learned about another person in the room?”, I then follow up with these types of questions:

  • “Is there anyone was physically challenged by this exercise?”
  • “Is there anyone for whom hearing was a challenge in this type of room?”

I typically am working in a room of able-bodied participants; and I tend to co-host this workshop with a friend of mine who uses hearing aids. She often shares how this exercise would have been extremely difficult for her to filter out individual voices in such a noisy room. I then share that, due to chemotherapy, my own daughter would have difficult with this exercise since she cannot filter voices well in a loud room. This type of exercise — given that you earn points for moving around quickly — would also prove unfair for anyone who might have mobility challenges. By design, this exercise creates advantage…. and ideally, it helps to highlight to others that we tend not to think about that advantage unless we have others in the room who are unfairly disadvantaged because of it.


I am loving this year’s American Idol series. While, yes, we do watch it as a family, it particularly hits home for us as a family with a visually impaired child. Scott MacIntyre, a top 12 finalist, is raising our awareness of how we do things.

Millions dream of making it to the final rounds of American Idol but for Scott MacIntyre, the dream has become reality. Born with severe vision loss from Leber congenital amaurosis (LCA), Scott is an incredibly gifted musical performer who has made it to the Top 12 on American Idol. With his remarkable talent, Scott is bound to make it far in the competition, and we need you to support him as he shoots his way to the top!

An Arizona State University graduate, a Marshall scholar, and a Fulbright scholar, Scott learned to play the piano at the age of three.  His piano professor, Walter Cosand, said, “He’s always been able to do what everyone else could do and many things no one else could do. A lot of things he does are very remarkable, even for someone without a disability.”

Scott also has a sister, Katelyn, who has lost her vision to LCA. With their brother Todd, the three siblings have made a splash performing as the MacIntyre Family Singers. Scott even shared his talents with the FFB family when he performed at the opening luncheon of the 1998 VISIONS Conference in Chicago.

Not only do we have a visually impaired child, many of her friends (at least the ones we see over the summer in a special camp) are also visually impaired. So, the language that Ryan Seacrest uses when Scott MacIntyre is on stage is so familiar to us. Ryan Seacrest describes what direction Scott is facing, he details that Scott is receiving a standing ovation, and he uses physical touch (likely already negotiated — side note: it’s considered very rude to just come up to a visually impaired person and touch them; you approach and ask permission prior to touching someone!) to guide him when on stage. It’s something the American Idol host has never had to do in the 8 seasons the show has been on the air. While not explicitly drawing attention to Scott’s challenge, his very presence raises our awareness of a community that has not gotten exposure in mainstream media.

Yet, it’s a learning process. Because we are so used to speaking and working with able-bodied folks, we still slip. So, last night, I cringed as Ryan Seacrest told all of the finalists to “come to the middle of the stage!” at which point everyone came running down the stairs and hugged one another in the center of the stage. And, up in the left hand corner of the screen, there was Scott MacIntyre — standing still, not moving, and stuck. There were no handrails on the stairs, and Scott was indeed on the top of the risers. After about 20 seconds (which, to me, felt like 20 minutes!), someone came running out from backstage to guide Scott to the center of the stage where he could join his fellow finalists.

Scott’s success in American Idol — and the ways in which his very presence raises our awareness — is so important to the conversation about how we benefit from having diversity in our lives. It requires us to think about ways in which we assume that “everyone is like us”. In the disability circle, specifically, it raises our awareness of ways in which we are blind (my own pun, intended), to the assumptions that everyone does things just like us.

Just like us. Note that I didn’t write “the assumptions that everyone can do things”, but rather that “everyone does things just like us.”  My daughter can jump, run, play sports, sing, walk, participate in just about everything else that any visual child can do … she just doesn’t do it like everyone else. Go check out a “blind baseball game” (there are national leagues that do exist!). Listen to how conversations are built around faith and religion when there are Christians, Jews, and Muslims all in one room as opposed to when those groups are in isolation. Having different types of people and experiences requires us to take into consideration how others engage in the conversation, activity, and process.

So, do I think it matters if someone has a Black professor? Yes. A group of diverse friends/co-workers? Yes. Opportunities to dialogue across faith traditions? Yes. That there is diversity in decision making positions? Yes.

Experiences that require us to work with different types of people bring a new level of awareness to how we navigate through our own world. When we aren’t challenged to see things outside of how we do things, we don’t suffer. American Idol has been just fine in the past 7 seasons. But, this season – with the inclusion of a very talented and deserving artist – has hopefully highlighted ways in which we take for granted that OUR way is the ONLY way.

Thanksgiving memory

While I don’t celebrate Thanksgiving as a day of “love and peace between Pilgrims and Native Americans,” images(slaughter of Native people, taking of their land by early Pilgrims, current discrimination of Native people, etc), I do celebrate the opportunity that 4-days off to see friends and family is given to us.  With many of my family members living all over the country, this is a day when we know that people will be around for a good 4 days or so. Thanksgiving is a special day for my family because we certainly have so much to be thankful for our in lives: cancer survival of so many in my family, births, reunions, etc.

But, there was one Thanksgiving recently that irked me. As many do during this time, I had the opportunity to connect with a few peole who I hadn’t seen in about 15 years. Long time. In this gathering of folks, looks have changed, boyfriends/girlfriends/marriages have changed, children have been added, new countries have been visited. And, as racially diverse as this group was (which is very rare for the town in which I was raised), we were also incredible diverse in our life experiences. Three of us were married. One of the group was recently divorced. Two of us had children. Three of us were homeowners. But, of our gathering, there was one in our group who had very different experiences: single, wealthy, jet-setter, no  commitments, no responsibility other than to herself.

I have always been very thankful for the way my life has turned out. During the time of this gathering, in fact, my daughter had just finished chemotherapy, I had just delivered my second child, and had been recently promoted at work. My favorite things to do then are still the same things I love to do now: spend time with my family, snuggling on the couch with my kids, and being in bed by 10pm so that I can do it all again the next day. Unlike this single acquaintance, I don’t make a lot of money, but I love going to work every single day. I love my life. I have chosen this life. I wouldn’t have done it any differently.

That was, until this single friend turned to me that night and said, “Wow. Our lives are so different.”

“Yes, yes, they are,” I replied. I really hadn’t thought anything of it until she then followed it up with, martini

“I feel so bad for you,” while nodding her head pitifully at me and then sipping her cosmopolitan martini.

WIth a desire not to make a scene, I basically just chalked it up to her inebriation and my annoyance. But, with the arrival of each Thanksgiving, I can’t seem to shake her “pity” for me. I convince myself that it’s actually she who is missing out being surrounded by unconditional love. I convince myself that having cared for a child with cancer has made my life more meaningful, more rich, and more thankful. I convince myself that I would much rather sit at home and watch “Entourage” than have it be my life. And, I believe all of it. Yet, each Thanksgiving, her face arrives back into my consciousness and her words, “I feel so bad for you” ring through my ears.

So, while there are so many things to be thankful for, it’s hard not to wonder, “What If?”. What if my child was never diagnosed with cancer? What if I didn’t have to pray every night that she would wake up the next morning? What if I didn’t have a house with an inflated mortgage, a job that I need to pay the bills, and a group of children who I had to tuck in at night? What if I didn’t have to change diapers, worry about car seats, schedule my day around nap times, or work 50 hours a week for the same amount of money that this woman makes in a day? Would she feel less bad for me? Would i feel a yearning for a life of family, house, stability if I lived the single, jet setting, no commitment lifestyle?

I’m sure after a round of turkey and a few helpings of cranberry sauce, this woman’s words will leave me – until next year. I feel like, in my case, the grass isn’t greener on her side – at least not for me. I feel Blessed, thankful, and enriched for being able to give life, protect life, and create life; and, in return, my children, family, husband has given life to me.

The Importance of Reference

I know… I should be doing other work, especially given that my last two posts were about how insanely busy it is in my life right now. But, with only 26 minutes before the debate, I felt compelled to write about a conversation I had with my older daughter on the way home from school.

This post is about “references”. No, not job references or character references — rather, the ability to be able to refer to some thing, some one, or some concept that, essentially, will make sense to a 5-year old. Not too long ago, I wrote about how I was watching the Republican National Convention with my daughter. While watching it, we saw the McCain photo slides of men in turbans and dark skin with machine guns, and then images of the American flag. I watched it horrifed. My husband nearly threw the remote control at the television in utter disgust of the connection the video was making. My 5-year old said, “Do those people want to kill America? Does the “N” family want to kill America?”

NOTE: The “N” Family is a close family friend of ours who are Muslim. They practice full covering, are very religious in thought and practice, and one of the most loving wonderful families we know.

I nearly wanted to cry. I couldn’t believe that, even without any hateful words coming from the television, my 5-year old was getting the message that people who looked like the “N” family wanted to “kill America”. I was thankful that, at that important learning moment, I could help her work through what that meant. I asked her questions about her favorite memories of the N family. She quickly and easily retold her favorite memories with a smile on her face. I asked her what she misses about the N family (we only see them 2x a year). Again, with great honesty, she talked about their fun adventures at the park, the way their Mama hugged her tight, and the funny stories they told each other each summer.

“Do you think the N family wants to kill America?”

“No, Mommy. Then why do those people want to kill America?”

“I am not sure. But, I know that just because some one looks like those people doesn’t mean they want to kill America.”

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Introducing… White Privilege

Ah, my good old friend – White Privilege. Unfortunately, too many people have been subjected to this friend’s presence. And, too many people have never even heard of this legendary idea. That’s too bad, because we all have to deal with it. It’s the house guest that was never invited, never leaves, and is also the elephant in the room.

As an aspiring anti-racist and multicultural life liver, white privilege has been something I’ve known about for years and years. It’s taken some time to truly understand it, but I had at least heard of it, knew I needed to know it, and have been working to introduce it to others.

Most folks (hopefully) are hip to Peggy McIntosh’s “Unpacking the Invisible Knapsack”. If you aren’t, it’s a “gotta read.” Or, really, a “stop what you’re doing and gotta read it now” deal. Want someone more current, get hip to Tim Wise‘s work. While he’s been out there a long time, people recently started to get on to him with an essay that’s gone viral (nice job, Tim!). I’m finally hearing people mention his name (even though he’s spoken at hundreds of schools and organizations, has a great blog, and written a handful of powerful books).

There are entire blogs out there just about white privilege, and mine certainly isn’t one dedicated to it. But, as white privilege is the flipside of discrimination, it’s a must-talk-about in all diversity circles.

So, a few interesting stories about white privilege that I’ve experienced in the past few weeks:

There have been a couple of other messages out there about white privilege and the election (of course). So, one was forwaded to me the other day at work comparing and contrasting the “get out of jail free” cards that McCain and Palin get while the Obamas get slammed. I won’t go into all the details here, but they are obvious enough to figure out.

A friend of mine had forwarded to me, and I simply responded with, “Hurray for white privilege!” (sarcastic, of course). She then emailed me back and wrote, “I don’t think it has anything to do with white privilege — they would have done the same things to John Kerry and Hilary Clinton.” I didn’t respond via email, rather, I snarked and said aloud, “Like I said…. Hurray for white privilege.” Yes, the friend is a white woman… with enough privilege to be able to negate that the freebies McCain/Palin were getting weren’t based on race. Yup. White privilege. Let me introduce you, shall I?

I’ve written before about how a dark-skinned Puerto Rican friend of mine got nailed for wearing a “Got Privilege?” shirt in public. A white woman came up to him and began criticizing him for wearing it and even went as far to say, “How would you like it if I wore a ‘Got Affirmative Action?’ shirt??” Uh, huh. It’s too good to even lie about that stuff.

This entry wasn’t so much to digest White Privilege, but hopefully to get you to click on some links and check out other people’s thoughts and such. Feel free to leave you’re own here, too!