Ever Heard of Job Lock?

(A reminder of what's at stake)

It’s when an employee feels they can’t leave a job (or take a more appealing opportunity) because they will lose their health care benefits (or the more appealing opportunity does not have adequate health care coverage).

When I was in college, I wanted to be a political consultant – a pollster, maybe a strategist. But there was a major roadblock standing in my way. I needed to work on Capitol Hill to get a better understanding of the political environment and make the connections I would need. But bottom tier jobs on the Hill did not come with health insurance back then. Or salaries above about $20,000/year if you were lucky. Hardly enough for rent and a diet of just Kraft Macaroni and Cheese in Washington. You could only stay on your parents’ insurance until you were 23, and any gaps in coverage could allow your next employer to deny coverage of your chronic condition for up to 18 months. You had to have a HIPAA letter attesting to your continuous coverage if you changed jobs at all. No job I could have gotten then would have paid enough to cover COBRA.

So, that was the end of that. Instead, I got jobs with large companies that took my career in a direction I didn’t necessarily want to go. But it was a paycheck and fairly inexpensive coverage, at least until the last few years. I spent most of the time unchallenged and using skills I’d developed before high school. Then the Affordable Care Act (ACA or Obamacare) passed and I got the idea for this blog. I want to transition eventually, to write full time on issues important to our chronic and autoimmune community.

If Republicans scrap, sabotage, or otherwise tank the individual market, I won’t be able to do that. Neither will many others. Our economy is on track to move away from the big corporations and more toward an a la carte market where small businesses provide tailored, less expensive solutions to a host of business concerns. But entrepreneurs with chronic or autoimmune conditions who don’t have access to affordable healthcare won’t be able to get off the ground. Large chunks of their starting capital will have to go toward keeping themselves healthy enough to work.

And it’s not just us. Our healthy parents and spouses may feel like they are locked in, as well. My father didn’t particularly enjoy his job. He was good at it, but it wasn’t what he would have chosen for himself. He was offered other positions, and I know my mother encouraged him to take something that would make him happier. However, with my and my mother’s health issues – there was a time when it seemed like there was a new crisis every week – he was reluctant to leave what was, by 1980s/1990s standards, comprehensive health insurance. It was just too much of a risk. He was stuck, too.

The current administration is doing its best to sabotage the ACA. If the President succeeds, not only will it return us the days of financially crippling healthcare costs, it will additionally keep us from creating the best, most creative market we can because those with potentially impactful and entrepreneurial ideas will not be able to find a way to get them to market.

We talk about healthcare with an edge of panic because being able to literally live is the primary concern, and our incomes shouldn’t be what decides who lives and who doesn’t (yes, it can come down to that). But let’s not forget that there are ripple effects, too. The United States has one of the most educated, but underemployed workforces in the world. Can you imagine what our economy would look like if we could all contribute the way we wanted to?

Call your Congresspeople, all of them. Tell them you want them to keep and fix the ACA. It’s worth the time spent on a few phone calls. There’s more at stake than we think.

Find your Congresspeople here.

It's Open Season! - Coinsurance, Secondary Insurance, and Supplemental Insurance

There are pieces of the health insurance puzzle that aren’t as well-known as the others. Like those last puzzle pieces around the edges, coinsurance and secondary insurance are not as definitive to a policy as central pieces like premiums or deductibles, but still vital to finish the whole.

Coinsurance

Coinsurance is when you pay a percentage of the cost for a service or medication and the insurance company pays the rest. You probably have coinsurance built into your plan. It can be instead of co-pays or in addition (for out-of-pocket expenses). It can also be applied to the entire cost or the remainder after the plan pays the negotiated price for service. If you can figure out how many and what portion of service and medication costs coinsurance will cover under your insurance plan, you should add the calculation to your estimate of total annual cost before you choose your plan. 

Generally, plans with lower premiums have a higher percentage paid by the patient, and higher premiums have lower percentages.

Secondary insurance

Secondary insurance is exactly what it sounds like. It’s when you are covered by two separate insurance policies, a primary that pays most of your expenses and a secondary that picks up what’s not covered, or most of it (hopefully). You may not be aware that you are allowed to have two insurance policies. Most people don’t. However, if you have Medicare, you can also have another plan such as an individual plan, a plan from your employer (previous if you are retired), or Medigap insurance, or if your family has two working adults, you can buy coverage from both employers.

Coordination of Benefits (COB) rules dictate which plan is primary and which plan is secondary. Each state’s insurance commissioner sets guidelines that help insurers determine which plan is primary and which is secondary. Once that is settled, the primary will pay for what is covered under its plan as if there weren’t a secondary plan, and the secondary will consider what the primary plan has paid, and decide what to pay of the remaining costs.

A secondary insurance plan can’t pay anything toward the primary plan’s deductible. If both primary and secondary insurance plans have deductibles, you may have to pay both before full plan benefits kick in.

Secondary insurance is NOT the same as supplemental insurance

Well, except if you are talking about Medigap, Medicare’s supplemental insurance.

Outside of Medicare, though, things work differently. Secondary health insurance is a second main insurance plan. Supplemental insurance adds categories to what is covered under those main health insurance plan(s). Vision, dental, accidental death and dismemberment, long term care insurance, and Aflac-type plans that pay for regular living expenses should you be incapacitated can all be considered supplemental plans.

Purchase of supplemental insurance depends on the cost and availability of the plans, as well as how much risk you have for each insurance category. Most employers offer vision and dental insurance, and most people purchase it if they have the opportunity since teeth and eyes can develop issues if not properly maintained. But there are other types of supplemental insurance that could also be helpful. Accidental death and dismemberment insurance would be valuable to someone working in construction. I bought long term care insurance when I was 29. I suspect I will need it one day and the company didn’t require a medical exam if I enrolled in the first 30 days of employment with that employer. I wouldn’t need it for a long time, but I might have never gotten the chance to buy it so cheaply again.

The time is almost here!

Many employer-based insurance plans do their best to sync with government plans, which means that Open Season will start on November 1st for most of us.

There are a lot of elements to consider when picking or updating your insurance coverage (such as calculating costs, health savings, and plan basics). As you calculate costs to make your choice, don’t forget to factor in the options above. Coinsurance can be an unexpected and unplanned-for expense that is harder to calculate than some other types of payments, but secondary or supplemental insurance can help you get close to 100% coverage. Good luck picking your plan!

It's Open Season! - The Things We Pay for Care

There are multiple ways you probably pay too much for your plan. Most of us just look at the monthly premiums and choose the best coverage for a cost we can manage. But when choosing a plan, know that more than just premiums are going to burn a hole in your pocket.

Premiums

Premiums are pretty straightforward. It is the set monthly cost you pay for your coverage plan. A rare (usually small business) employer will pay 100% of your premium. Most employers (and the government if you choose a plan offered by the Affordable Care Act (ACA or Obamacare)) pay a percentage of the total and forward the balance to you, which is deducted from your paycheck before taxes are applied. Every single health insurance plan has a premium.

However, there are two other types of payments that should be factored in your choice, as well: deductibles and co-pays. All three vary with the level of coverage. The broader the services and medications covered, the higher the premiums, deductible(s), and co-pays. The balance is that, with higher deductibles, a plan usually has lower premiums and vice versa. That’s not to say that the premium + deductible amount will be equal between plans. It’s a matter of deciding whether you would rather pay more up front or over the course of the year. 

Deductibles

A deductible is the fixed amount determined by the plan sponsor (government or your employer) that most plans require you to pay out of pocket before your coverage kicks in. More lenient plans will allow co-pays for services and medications before you meet the deductible. You may have separate deductibles for in-network and out-of-network expenses.

Deductibles can soar to over $10,000/year. For 2018, any deductible over $1,350 for an individual and $2,700 for a family qualifies you for a Health Savings Account.

Co-pays

Co-pays are fixed amounts that you pay for medical services and prescription medication. The fixed amount is negotiated between the provider and the insurance company. For example, while all preventive services like your annual physical are free under the ACA, seeing a specialist might cost $30/visit and going back to your Primary Care doctor for the flu might be $20/visit.

For prescriptions, co-pays are a little more complicated. There are usually tiers of drugs based on whether they are the generic version or the name brand, and what the overall monthly cost of the medication is. The co-pay is often less if you buy from your pharmacy provider’s mail order service since they can buy and distribute in bulk more easily that way.

Calculating cost

Now it’s time to calculate your total cost.* Co-pays are almost as straightforward as premiums. If you know how many specialist visits you will have per year (the regular ones, not the unexpected), calculating your total co-pay budget is easy. The prescriptions are also a fairly easy calculation if you read the part of insurance policy that lists which medications fall under which tier.

The impact of deductibles on your budget is more difficult to assess. In addition to the number of times you see your providers, it helps if you know how much your doctors charge per visit. You can find these rates with the paperwork you receive from the doctor and the pharmacist. For prescriptions, there is often a label that shows the full price as well as the cost to the patient. For doctor visits, you may have to ask the provider, but sometimes it comes on the paper that shows the condition code (why you saw the doctor).

With all of these numbers in front of you, if you can estimate how quickly you will meet the deductible and the remaining co-pays, you should be able to make a fair estimate of your annual out-of-pocket medical expenses. This will provide a useful tool to reconcile your monthly and periodic medical expenses with your budget, and hopefully make easier the choice of a health insurance plan.

*I will discuss coinsurance, the last part of the equation, in another post, along with secondary insurance.

It's Open Season! - How to Pay Less for Medical Expenses You Need

Still hunting wabbits . . .

Open season is still on the horizon, so I thought I’d offer another couple of health plan components that you may be able to choose from, the Flexible Spending Account (FSA) and Health Savings Account (HSA). Pretty straightforward, I thought, until my dad (the retired healthcare exec) laughed at me. Maybe not. There are several subtle and not so subtle differences between the two options, but they are still easier to understand than most health insurance policies.

In a nutshell, FSAs and HSAs help you budget for your medical expenses with money that isn’t subject to income or payroll taxes. You usually can’t get both unless you are eligible for a dependent FSA (not discussed here). But if offered, you should take one or the other because, as Dad always pointed out, if you don’t take advantage, it’s like paying 133% when you don’t have to.

The one thing that may limit you on this is monthly overall expenses since once you make your contributions, withdrawals for non-medical purposes come with a penalty. I would love to be able to max out my contribution (I’ve had each before), but often I need cash on hand to pay for other non-medical expenses. So, I try to get as close as I can to the total out of pocket maximum for my plan that year, as much as I can without limiting the ability to pay other expenses. I am also lucky that, if I do an annual wellness check, my employer will contribute a few hundred dollars (that doesn’t count against the maximum contribution limit). I get into what this means below.

Often, you have an idea of what your annual medical expenses will be based on the previous year: regular medications, number of doctor visits, medical device supplies, whether you are going to need planned surgery like for cataracts, or dental work. Use these estimates to come to an annual total and divide by the number of paychecks you receive per year for the amount of your contribution per paycheck, and see if you can afford to lose that much at a time. If not, start subtracting until you reach a contribution you can afford.

Then, if you have a choice, use our list to decide which option is the best fit for you. I will highlight the biggest differences between the two.

Flexible Spending Account

• The basics: Account is set up and owned by employer, there are no eligibility requirements, and no fees.
• Plan availability: Account is offered with both traditional health insurance plans (Health Maintenance Organization (HMOs), Point of Service (POSs), Exclusive Provider Organization (EPOs) plans) and high-deductible health insurance plans (Preferred Provider Organization plans (PPOs)).
• How it’s funded: Contributions are always deducted pre-tax from your paycheck. Distributions (when you pay for stuff) are tax free.
• What’s covered: Can be used to pay for health insurance expenses such as co-pays, deductible, coinsurance, and prescription drugs, as well as over-the-counter (OTC) medical necessities such as Band-Aids and medication (with a prescription – yes, your doctor should write you a prescription for OTC medication if you ask – does not include Band-Aids). You should check your plan, but most of them cover the things the IRS considers tax deductible. 
• Funds availability: The entire annual amount is available on day one, but your employer may impose a penalty if you use funds for non-medical items.
• Rollover: Before the Affordable Care Act (ACA or Obamacare), the employee had to use the whole amount every year. If you didn’t, the remainder went to your employer. Now the employee can roll over up to $500 if the insurance plan permits it, and any funds rolled over are added to the next year’s maximum.
• Contribution: The IRS has not set the FSA maximum for 2018, but projections are that it will remain the same as 2017, $2600. Employers can contribute amounts that push the total past the maximum, and you can only change contribution amounts during open season or upon marital status change.
• Portability: An FSA will disappear with a job change unless you are eligible through COBRA (a limited and expensive continuation of a previous employer’s health plan).

Health Savings Account

• The basics: Account is offered by the insurance provider and owned by the employee. Some may have a small fee, which an employer usually pays, but you should read the fine print to be sure.
• Plan Availability: Only offered with high deductible health plans. To qualify for an HAS in 2018, that means a deductible minimum of $1350 for a single person/$2700 for a family and a maximum out of pocket cost of $6,650 for a single person/$13,300 for a family. Additionally, to qualify for an HAS, a health insurance plan must not offer any coverage beyond preventive care before the person/family meets the deductible.
• How it’s funded: Contributions are tax deductible or can be deducted before payroll taxes are applied to your paycheck. Any growth or withdrawal is tax free. Some people look to these accounts as a good investment. I invariably go through them in a matter of a few months thanks to consumable medical supplies and expensive medications.
• Funds availability: You can only use funds that have accumulated by the time of need, and if you use the funds for non-medical items, those funds will be subject to previously waived taxes, as well as a 20% penalty.
• Rollover: Whatever is left at the end of the calendar year rolls over and accumulates.
• What’s Covered: Can be used to pay for health insurance expenses such as co-pays, deductible, coinsurance, and prescription drugs, as well as over-the-counter (OTC) medical necessities such as Band-Aids and medication (without a prescription). You should check your plan, but most of them cover the things the IRS considers tax deductible. 
• Contribution: The maximum contribution is $3450 for an individual/$6900 for a family. Individuals 55 and over can increase those amounts by $1000 (same for families), and you can adjust the amount of the contribution during the year.
• Portability: You are allowed to keep using HSA funds even after you are no longer eligible to contribute (if you switch to a plan that does not qualify as a high-deductible plan), and it can follow you from job to job.

For more information on these types of plans, see IRS Publication 969. And if you have more questions about insurance before or during open season, please contact me.

It’s Open Season!

(Shhh, I'm hunting wabbits. Well, health insurance plans, but still . . .)

It’s October, the traditional kickoff of Open Season, a time when both employers and the government present health insurance plans for the following calendar year. The period given to make a choice is short, sometimes just a week or two in the private sector. The enrollment period for plans under the Affordable Care Act (ACA or Obamacare) this year is November 1, 2017 through December 15, 2017.

Despite the long enrollment period for ACA plans, be careful when procrastinating this year. In an effort to depress enrollment in ACA plans, the Trump Administration has instructed the Department of Health and Human Services to allow the Healthcare.gov website to nurse its weekly hangover on every Sunday of the period, except the last one, December 10th. The site will be shut down from 12 a.m. to 12 p.m. on those days. For those of you who don’t procrastinate, the site will also be unavailable on the first night of the period, November 1st.

These deadlines are important to remember. If you miss the deadline for either private or public enrollment, you can’t enroll in a health insurance plan unless you start a new job.

Public and private plans tend to mirror each other since the passage of the ACA. One of the biggest things they have in common is the type of plans offered. Two of the most common are the Health Maintenance Organization plans (HMOs) and Preferred Provider Organization plans (PPOs).

The main differences between the two options are coverage and cost. (Please note that the below description are generalizations. Your plan may differ in some important ways.)

HMOs

Coverage: Each insurance company has a network of doctors, hospitals, therapists, and other providers. A patient chooses a primary care doctor who is in the network. That doctor directs the patient’s care, including how much (whether they see other doctors) and by whom (which other doctors they see). If the patient needs to see a specialist, the primary care doctor has to agree that they need to and they must see someone in the network.

Costs: The insurance companies negotiate a discounted rate with their network providers, kind of like buying in bulk. If the patient wants to see a provider outside the network, the entire cost comes out of the patient’s pocket. But premiums are generally lower and co-pays are minimal, set costs ($5, $10, $20). HMOs often do not have deductibles.

PPOs

Coverage: The insurance company still has network providers, but they are larger. There is no referral necessary to see a specialist so the patient decides how much care they need and who to see. If the patient wants to see an out-of-network provider, a PPO covers the cost, at least partially.

Costs: PPOs still have negotiated rates with in-network providers, but premiums are higher. PPOs also have high deductibles and co-pays, which are a percentage of the cost of the appointment or drug. PPOs also have maximum out-of-pocket costs, which sounds good, but not when you realize that there are separate ones for in- and out-of-network costs, and may amount to several thousand dollars annually.

How to Decide

You and your family will have to consider carefully which plan is right for your needs.

• How strongly do you feel about choosing your providers? I am very picky about my providers and tend to research a provider before I go or ask for names from providers I already trust. I do not want to be told I can’t go to the best providers for me just because they are out of network, so I have always had a PPO. That does not mean that there aren’t good providers in an HMO’s network. It just means that there are fewer options.
• What kind of plan fits into your budget? I have a pretty reasonable premium, but I have two deductibles, and could end up paying $10,000 out of pocket this year.
• Are the doctors you see in your plan’s network and do you have the relationship you want with them? If it matters to you to stay with the providers you have, this may be an important factor.
• How likely are you to need one or more specialists? Many types of non-MD specialists often fall outside of network coverage: psychologists/social workers, nutritionists, chiropractors, etc.

If you want to know more about health insurance policies, check out these posts: Insurance 101, What is Health Insurance?, How Do They Figure Out What Plans to Offer and How Much They Cost?, Getting to the Bottom of What's Actually Covered

If you have questions about HMOs and PPOs, please email through the blog. I will try to answer your questions in subsequent posts.

It’s No Surprise to Me, I Am My Own Worst Enemy*

*Lit, 1999

Most –

No, scratch that. All of the chronic patients I know are perfectionists. We have to be, don’t we? We are given instructions by our medical team, modified to fit ourselves and our lives, in order to mitigate the symptoms and effects of our conditions as much as possible. Keeping on that path, as straightly and narrowly as we can allows us to live as normally as possible.

One friend with Celiac disease went out for Thai food the other night. She ordered the usually safe Pad Thai. Only this time, there was soy sauce in the Pad Thai, and she suffered for it. The symptoms were fairly mild, and over soon, but she still beat herself up mentally for the slip, even though it was an unforced error.

I do this to myself on a regular basis. I spent a lot of time deliberately not following directions from my doctors when I was a teenager. Everyone is young and stupid once, right? But I didn’t do it because I didn’t know what to do. I did it because I thought I knew better. The consequences were delayed so I thought I was getting away with it. Even the first round of serious complications – nerve damage (neuropathy) and fluid seepage into my retinas (retinopathy) – stabilized and subsided fairly quickly.

I got back on the straight and narrow then. I didn’t want more consequences. But the damage was done, and 10 years of “good behavior” couldn’t stop the development of kidney disease. There’s no direct evidence, of course, but I am fairly sure that my six years of teenage rebellion cost me about 50% of my kidney function and has shortened my lifespan. I carry a lot of guilt for that. So, any time I stray off the path my medical team and I have determined for me, I feel guilty that any mistakes might make my complications worse (and my life shorter).

That’s not fair. None of us is perfect and staying on a strict regimen is hard.

I’m Jewish and our most serious holiday, Yom Kippur, starts tonight at sundown. In my world, this is a time of reflection and atonement. We forgive those who have hurt us and ask forgiveness from those we may have hurt, whether intentional or not. So, why not ask forgiveness of ourselves?

That question has come up lately as my psychologist tries to get me to be gentler with myself. If someone told me they were doing what I was doing, would I be as harsh with them as I was with me? No, of course not. I would try to make them feel better and point out that they can always stop what is causing their guilt. Tell them that they can find the path they want again. It’s right there. Whenever they’re ready.

I can do that, too. I can forgive myself for past behavior, no matter how bad it was. I stopped, didn’t I? Not every new slip means a return to the old rut. But that’s hard, too. It means changing longstanding thought patterns and letting go of the habits of a lifetime. Like I said hard, but I bet it will feel better – lighter – if I do.

I know most of you aren’t Jewish, but this is an idea worth considering. We deserve a little gentleness, as hard as we work to keep ourselves healthy. We go through a lot—bad days we can’t explain, frustration with a body we can’t always control. So, let me ask you. Do you beat yourself up for every slip or most or a few? If you do, is it unconscious or do you hear your thoughts when you take yourself to task? Do you forgive yourself or have you not thought about it? And if not, why not?

Or maybe it should be, and if not, why not yet?

Is this the Zombie (Bill) Apocalypse?

Whiplash much? I don’t know how you feel, but the latest in healthcare policy news makes me feel like I’ve just been hit by a boomerang someone threw in July – lulled into relief when the “skinny repeal” died, then slapped upside the head with the current last ditch effort at passing an Obamacare repeal while they still have a chance to squeeze it by with 50 votes.

Cassidy-Graham

Meet the zombie. This back from the dead bill is a last ditch attempt to repeal Obamacare, or the Affordable Care Act, before the Senate loses its ability to pass it with only 50 votes. It is not bipartisan, and it goes even farther than the one that Senators Lisa Murkowski, Susan Collins, and John McCain killed this summer. 

It’s a punt. Federal lawmakers would cede their responsibilities to the states by transforming funding into limited block grants. The block grants would be distributed evenly to the states (those that expanded Medicaid under Obamacare would lose millions of dollars). Basically, that means that the Federal government gives each state a limited amount of money every year to use for healthcare, but with few, if any, guidelines on how it should be spent.

There would be no individual or employer mandate to support coverage. There would be no subsidies, and while insurance would not be able to charge people with pre-existing conditions more, there are easy outs on the type of comprehensive coverage necessary for chronic patients to survive. 

Funding would be cut by a third by 2026. In less than 10 years, the individual markets would virtually disappear due tounaffordable plans and potentially tens of millions of people would lose coverage through that and capped Medicare spending. Each state would determine its own Essential Health Benefits, so required coverage would narrow, if there was any at all.

What makes this round even worse than the summer is that stalwarts Collins and Murkowski have been unexpectedly quiet. Without last time’s bribe of a vote on full, immediate repeal, Senator Rand Paul has been tweeting his objections, but he has not said outright that he will vote against. John McCain, who hammered home the nail in the last bill’s coffin with a dramatically gladiatorial thumbs down? Though nothing he objected to has changed – lack of proper Congressional procedure through Committee hearings, public debate, etc. – he is close to co-sponsor Lindsay Graham, and has not come out against the bill, either.

But Cassidy-Graham isn’t the only bill on the block right now, though the others don’t have the same amount of backing.

Medicare for All

Sounds great, right? The idea of universal coverage is growing in popularity. But, while all single payer is universal healthcare, not all universal healthcare is single payer. Universal health insurance generally means broad coverage for everyone, no matter income, medical condition(s), or ability to pay. Single payer is a form of universal coverage paid by one party, in this case, the Federal government.

It would be so easy to let just one source take care of everything. And in just four years! However, the universal coverage offered by most developed nations is not single payer, but a hybrid of public and private coverage. Canada, whose system is closest to what Senator Sanders proposes, uses a private insurance market for services not covered by the government. And the Canadian government does not cover nearly what the Sanders bill proposes. (Medicare for all includes vision and dental care, which Medicare does not cover.)

Add to that the lack of a score from the nonpartisan Congressional Budget Office, which determines cost and loss of coverage impacts, lack of anything resembling a plan to pay for the coverage, and what would happen to our economy if the health insurance industry collapsed (which it would without a phase-out period longer than four years) and this bill is going nowhere.

It’s a good thought and an important introduction, but it also looks to be the next litmus test for what defines a “true” Democrat. I sure hope not. As the President’s approval numbers increase for the third week in a row, the last thing Democrats need is to shrink the tent. I hope we reach a  universal healthcare solution, and soon, but this bill is not the way.

Alexander-Murray

This one makes me sad. This was a good faith, bipartisan effort to stabilize the 2018 markets. Details of the plan are sparse – negotiations of a bipartisan healthcare bill are bound to be sensitive – but the intent was very basic. Republicans would get more flexibility for the states to offer other options under the 1332 waiver. Democrats would get guaranteed funding for subsidies that help low income individuals pay for their coverage (the President keeps threatening to not release it).

Senator Alexander announced Tuesday that negotiations had stopped because they just couldn’t find the support to bring it to the Senate floor. I believe this is because of the Cassidy-Graham bill in part, so there is a chance it could be resurrected after September 30th, but I don’t know how likely that is. 

What can you do about the zombie?

The clock runs out at midnight on September 30th. As Jon Favreau said in his latest podcast, “It’s scary again and everyone’s gotta get to the phones.” Again. Sorry, guys.

Vote Smart

Indivisible Guide

Birth of a Monster -- The Aftermath

Someone asked me recently to write about what it felt like to be a child patient. I had over half a dozen starts, but I ended up scrapping the article because it was too heavy.

Maybe that was my excuse because I wasn’t ready to put that period of my life down in words for everyone, even me, to read. But that’s not fair. Keeping it to myself or glossing it over to sound more optimistic can’t change what was or what would be. So much of my self developed from that one event and the nearly two years of recovery that followed. I just spent a happy weekend with maybe half of the people on the planet who remember that time, and I am reminded that it can’t hurt me anymore. I won.

This is the third of three posts where I will share the things almost no one knows or remembers from the beginning of my healthcare journey, and how the monster that personifies my conditions came to be. (Read part 1 here and part 2 here.)

The Aftermath

Thirty-five years ago, I survived meningitis. Two years after that, I had managed to recover from the paralysis of my left side. But it doesn’t end there. There were ripples, long shadows that I am still dealing with. My memory is much better for this part, or rather, my understanding, but the ripples are complicated.  They are physical and psychological, acute and chronic, affecting me and affecting others. Years of therapy have helped me understand the good (yes, the good), the bad, and the ugly.

The physical

The big stuff was behind me, but that wasn’t all there was.

• I had brain damage. I still walked into walls since I had lost some depth perception and I had seizures. I couldn’t ride rollercoasters. They were afraid that would make it worse. The first two went away. The second might have, but I missed that childhood fearlessness window, so I never tried.
• I had muscle atrophy in my entire left side, not something that can be fixed. It has caused a misalignment in the muscles in my back, which sends me to physical therapy occasionally, and may have contributed to a partially pinched nerve. My right side takes the brunt of any physical activity I do. I only discovered this when I was about 20. I went for new shoes, and the guy at the shoe store asked me if I knew my whole body sloped when I walked. Of course I didn’t. We tried to fix it with lifts, but it was so painful to shove those muscles back into alignment after that long, I gave up.
• I have a strength difference in the sides. The left side is about 20% weaker than my right. I can feel it, but no one can tell unless they see me lifting weights. The left arm just quits sometimes.
• I have had cataracts since I was 16, put there by the high doses of steroids I had to take during my illness and recovery. I should have surgery, but I don’t want to until I have to.
• I have permanently stained teeth. All those teeth whitening commercials really rub it in, too. But stains that come from a high fever are too deep for easy, inexpensive fixes.

The psychological

• I grew up too fast. After that I had no childhood. I had to know. Everything. My parents’ tenth anniversary was the summer I was seven, the same summer I started to walk again. They went to sailing school and left me and my brother with my grandparents. The only problem was that they had left the wrong instructions for my phenobarbital, a powerful drug that affects the nervous system. It is very addictive, a downer, and has a history of illegal abuse that lightened dramatically in the 70s and 80s, when it was replaced with a safer option, benzodiazepine.  We had a huge fight and I ended up locking myself in my room until they got the sailing school to radio the ship my parents were on to verify I was right. The alternative would have been a 7-year-old overdosing on barbiturates for 10 days. Dosages are difficult to calibrate, so an increased dose for that long could have resulted in coma and death.
• I hated having my picture taken. Hate might be too nice a word. Loathed. Abhored. Those might be better. I wanted no evidence of my time in a wheelchair. My shutterbug grandfather just wanted pictures of his granddaughter and I shut him down every time. Now I have no pictorial record of my triumph, which I regret. And I still hate having my picture taken.
• The closest friend I had dropped me as a friend because I wasn’t in her grade anymore, so I developed a mistrust of people and an extreme need for privacy. It made me doubt my value. My closest friends are my closest friends because they stuck around – they proved themselves -not because I invited them in.
• Boredom and apathy came often. School was easy, and what challenge could there possibly be after beating that one? I still struggle to find things that engage me for any amount of time.
• Then there’s the rage, oh, the rage. I didn’t learn until much later that the meningitis would turn out to be the catalyst every diabetic goes through to trigger the onset of my Type I diabetes. Most diabetics get a cold or the flu as their catalyst. But no, it seems my body must do everything in spectacular fashion, good or bad. It took eight years for the diabetes to develop, but when it did, I was beyond the usual level of anger new patients feel. I had already paid my medical dues, survived more medical baggage than most people would in a lifetime. Problem was, there was no outlet, no fault. So, the fury just sat there, boiling for about six years, but still simmering. I am just now learning how to find a life without it.

Harm to my family

My parents never talked to me about it, but I am sure it strained their marriage. The worst was the unintentional neglect of my brother. He was two when I got sick, a time when he needed the majority of the attention from my parents. Instead they had to be focused on me. I still feel guilty. I know it wasn’t my fault, but it wasn’t his, either.

Now for the good

• I am strong. I have no doubt. It’s something I’ve internalized, and can draw on when I need to steady myself. Nothing will ever be a crisis. 99% of likely life experiences aren’t going to be as bad as that one, so I can handle whatever you throw at me. Calmly and without drama.
• Learning is easy. The only way I could look like everyone else during was to read, so I did. A lot. I was lucky to have parents who indulged me when I disappeared into the bathroom for hours, the only place I could be (fairly) sure I wouldn’t be bothered.
• For the rest of the good, it’s hard to separate whether they’re from meningitis or diabetes or something else. There’s the risk aversion, the confidence in the value of the relationships I do have, and finding my worth outside of superficial concerns or other people’s opinions.

The bottom line is that being a child patient was a major foundational event for me, perhaps the foundational event. I have no idea who I would be without it, but I am fairly sure I wouldn’t like that person as much as I do this one.

Birth of a Monster -- The Recovery

Someone asked me recently to write about what it felt like to be a child patient. I had over half a dozen starts, but I ended up scrapping the article because it was too heavy.

Maybe that was my excuse because I wasn’t ready to put that period of my life down in words for everyone, even me, to read. But that’s not fair. Keeping it to myself or glossing it over to sound more optimistic can’t change what was or what would be. So much of my self developed from that one event and the nearly two years of recovery that followed. I just spent a happy weekend with maybe half of the people on the planet who remember that time, and I am reminded that it can’t hurt me anymore. I won.

This is the second of three posts where, I will share the things almost no one knows or remembers from the beginning of my healthcare journey, and how the monster that personifies my conditions came to be. (Read part 1 here.)

The Recovery

Shall I spoil the ending? Everyone loves a spoiler, right?

Well, I lived, and I recovered the complete use of everything that was paralyzed. Almost. I had no use of my left arm or leg. I couldn't walk, so no bathing myself, using the bathroom, going outside to play, feeding myself (try opening a bag of chips with one hand or serving yourself at the table) or writing (I couldn't hold the paper).

Recovery was difficult, much more than the actual disease. Child or adult, you don’t have control of a disease like meningitis. It has to run its course. Once they let you go home, that’s when the real work begins.

Much like the hospital stay, there are things I remember and things I don’t. What I didn’t know then was that my mother had decided that she would do everything humanly possible for my recovery for three years. If there was no progress in that time, she would ease up, but until then, there would be no rest for the weary. It only took half that, but sometimes she pushed so hard that I hated her.

I went to physical therapy every day for six months. Anyone who has been through physical therapy rehab knows that it’s not pleasant, and often painful. My sessions were no different. And they gave me stuff to take home. I particularly hated throwing bean bags through a tire. So tedious. They also gave me this round piece of wood with wheels to push myself around on, which means I must have recovered use of my left arm fairly quickly. I don’t remember that.

After the initial six months, I still had to go, just less often. There was also occupational therapy, which was a lot more fun, although I remember bending my left hand with my right to try to make it do what I wanted. Was that cheating?

Anyway, I got there eventually. Which is good because my arms played a vital role in the return of my mobility. I remember that moment more clearly than I remember yesterday. My mother was taking a well-deserved break from me. She’d left me on the couch in the living room while she was in her bedroom talking to her best friend. I was bored and trying to get her attention. They had given me a bell. Can you imagine anything more annoying than a bored six-year-old with a bell? She ignored me, and after a few minutes, I got so angry, I rolled off the couch and pulled myself into her room by my arms.

That was the first big breakthrough. There is a big gap in my memory between that and the next major step (literally). I go from that to pushing my own (empty) wheelchair or my mom holding me up by the belt loops in my jeans while I tried to make my left leg work.

It was July when it finally did. We were at my grandparents’ house. My mom was standing behind me and someone else, probably my grandmother, was standing a few yards away. My mom let go of me and I toddled over. Just made it. It was exactly what a toddler does with their first steps, only with a more difficult center of gravity and a fear of falling.

It got easier after that. In fact, when I talk about my recovery, I stop there, at 18 months, even though I wasn't 100%. It was the turning point, the moment we realized that I would be able to reclaim all I had lost. But there was no sense of triumph, no overwhelming need to celebrate, at least not for me, just an indelible memory and later, an adult’s perspective of the importance of the moment and what it would have meant if it had never happened.

I’m sure it was different for my family. The emotional burden was harder on my parents and grandparents, and the other adults who loved me than it was on me. They knew what it meant. All I knew was that I didn’t like being different from the other kids or constrained in what I could do. All that work my mother pushed was like chores. No different than doing the dishes – I didn’t want to do it, but it wasn’t my choice. If I wanted to be like everyone else again like I wanted my allowance, that’s what I had to do. 

Sometimes I read about similar stories or watch reports about sick kids on TV. None of it looks or sounds like what I remember. For me, at that time, it was simply part of my life story. Different from most, perhaps, but nothing more or less than anyone else might have done. I’m glad about that. If they had made it into a Big Deal, I don’t think I would have been equipped to handle what was to come.

Birth of a Monster -- The Illness

Someone asked me recently to write about what it felt like to be a child patient. I had over half a dozen starts, but I ended up scrapping the article because it was too heavy.

Maybe that was my excuse because I wasn’t ready to put that period of my life down in words for everyone, even me, to read. But that’s not fair. Keeping it to myself or glossing it over to sound more optimistic can’t change what was or what would be. So much of my self developed from that one event and the nearly two years of recovery that followed. I just spent a happy weekend with maybe half of the people on the planet who remember that time, and I am reminded that it can’t hurt me anymore. I won.

For the next three posts, I will share the things almost no one knows or remembers from the beginning of my healthcare journey, and how the monster that personifies my conditions came to be.

There’s a lot I remember clearly and a lot I don’t remember at all.

It started before the hospital, of course. It was February, flu season, and I wasn’t feeling well. Even so, my school was having multicultural night and I wanted to go. Kindergarteners sat on the gym floor, and I wet my pants. It was very embarrassing; I was almost six years old. I didn’t know at the time that my bladder was already paralyzed. The timeline is a little fuzzy, but I think that was Saturday night.

Sunday morning I still wasn’t feeling well. I asked my mom if I could take a nap on her bed. I was wearing blue footie pajamas.

I only know what I’ve been told of the next four days or so. That my grandparents called and when I didn’t answer the phone like always, my dad went to check on me. That he found me in a coma on his bed, foaming at the mouth.

Back then, we lived four blocks away from a hospital. My parents called my godparents, who rushed over. My godmother stayed with my brother while my godfather drove me with my parents. This is where luck lived for me. The ER doctor had no idea what I had, just the 105 fever. My brain was boiling in its own fluids. He treated me with penicillin, which just happens to be the treatment for meningitis.

I was comatose for three days. In that time, they catheterized me and tried to cool me with a special blanket. My parents were told to talk to me because there was evidence that comatose patients could hear. (That's true.) I remember the rise to the surface. It was like when you go through your transition sleep stage, when you know you are about to wake up but you’re not quite there yet. Sometimes I heard my dad playing guitar and singing to me. Sometimes I heard voices I recognized talking to each other or to me. I was trying to talk to them, but I couldn’t and I didn’t understand why they couldn’t hear me. The last push through the fog was a choice. I heard my godmother’s voice. I could either go back to sleep, or go talk to her. Either or. I chose the familiar.

The first thing I noticed was the catheter. I was at that age when kids are hyper sensitive to embarrassment. So, of course, all I remember from the ICU was how embarrassed I was that there were people there and I didn’t have underwear under the hospital gown.

I spent the next three weeks in a special children's ward. I wasn’t really scared. I didn’t understand enough to be scared. I knew I almost died, and that no one expected me to improve. I had pain, a lot of it.

There was the spinal tap after which they asked my mother if she could hear me screaming in the cafeteria two floors up. I can trace my fear of needles directly to that moment. I used to try to get out of bed and fall instead. I wet the bed a lot since my bladder was still paralyzed. So was my neck, but at some point my mother decided that it wasn't going to be and with one hard yank, she turned my head and loosened the muscles. I don't know why it worked, and there aren't words to describe how painful that was. Sometimes they wouldn’t give me anymore Tylenol for my headaches and I would lie in bed and cry from it, but not from fear. Fear wouldn’t come until later, when I understood more about what had happened and what mortality actually meant.