Thursday, November 30, 2006

A Pragmatic Look At Filing A Disability Claim

This is a companion to two other pieces on this site, Disability Insurance Basics and The Social Security Offset. They're long and there's some duplication, but if you're looking at disability you won't regret reading them. You might want to print out all three and read them in bits and pieces.

The Preamble

You’re not disabled because you say you are. You need evidence that you have a condition that renders you disabled according to the terms of your insurance policy. For evidence of disability the first place to go is to your main treating physician. Get a sense of his or her experience in dealing with disability carriers and get a sense for whether your condition in any way lends itself to other points of view.

To deny your claim under an employer-provided LTD policy (the most common kind), the disability carrier needs to show a "reasonable" basis for discounting your doctor's opinion. Those of us who are disabled get really scared about that standard, but they can't quite simply snap their fingers and say you're not disabled. They've got to get the "reasonable" opinion from an independent doctor, although the definition of independence isn't all that clear to my knowledge. But it can't be someone directly on their payroll. Whether it can be someone who does nothing but work for insurance companies against claimants is another story.

So, if I were in your shoes I'd want this to be nailed down as tight as you can make it. The more "objective evidence" there is, the harder it'll be for them to deny the claim. If your treating physician (often a family doctor) is in your court, it never hurts to get a second opinion from someone who's highly credentialed, as long as the opinion is congruent with your main doctor's opinion. You've got to have doctors who are willing to go to bat for you. I've got doctors like that, and just for added assurance they've all got "Harvard Medical School" on their resumes. It’s not a bad strategy, if I may say so myself.

The Checklist

1. Your doctor's support for your disability claim will be crucial. Make sure he or she is on board. Be nice to your doctor(s). Really nice. Do whatever they tell you to do, and offer to pay them for any time they spend on your insurance paperwork. One thing you've got going for you is that a lot of doctors hate insurance companies with a passion that’s almost kind of scary. If your doctor thinks your case is for real and that you're not malingering, chances are you've got a pit bull in your corner. I’m not kidding about this: One of my doctors actually started licking his lips when I raised the subject of insurance companies. You know how the Republicans are always accusing the liberals of hating George Bush? Talk to a doctor about insurance companies and you’ll see the face of hatred.

2. A diagnosis is not a disability. You must have a condition that prevents you from performing the duties of your job.

3. Most disability insurance claims are made under the group insurance plan provided by an employer. Before you file your claim, get a copy of the "Summary Plan Description" of the disability insurance in effect at the time you were disabled. The little booklet they gave you when you started on the job isn't enough. You need the "SPD." Call your former employer's personnel department and request a copy. If they don't send it to you, send them a certified letter asking for it. They must provide this document upon request.

4. Read through the SPD cover to cover. Pay particular attention to the definition of disability section.

5. On the claim form, they will typically have a very small space -- one or two lines -- for you to describe your job. Do NOT feel compelled to limit yourself to a short description! Simply write, "See Attachment" on the form, and include a complete description of your job and your job duties. Back to point #1 above, be sure your doctor is fully on board with the impact that your condition has on your ability to perform the duties of your job.

6. Do as much of your communication as possible in writing -- and save copies of ALL paperwork related to your medical condition and your claim -- as opposed to calling the insurance carrier, chatting with them and relying on your memory and your perception of what you were told. If they do call you, keep your answers short and to the point. Take notes, and in the friendliest possible way let them know you're doing it. Remember, however nice they are on the phone this is not a friendly chat. It is a structured exchange of information.

If you say something like, "Well, maybe it's not that bad and maybe I really could work," you could be in for real trouble. If they ask you when you think you could be back to work, you should answer, "I don't know." If they ask you whether you want to go back to work, say, "It's impossible to answer without talking to my doctor." Don't feel compelled to fill in silences in a conversation!

Here's a real claim-killer: THEM: "I can imagine that the stress of all this is really getting to you." YOU: "It sure is! Honestly, I wonder if all the worrying about it is what's making it impossible to work." That's an invitation to them to classify your disability as "mental" and therefore subject to the two-year limit for mental conditions found in most employer-provided group policies.

So remember: Short, literal and to the point. Save the babbling for someone else.

7. Do not feel guilty for filing a claim. Insurance is there for a reason. You are not obligated to drag yourself to work when you're unable to do the job.

8. Be extremely cautious before considering any sort of part-time work, especially before your claim is approved. All this will do is allow the carrier to base your disability benefits on a lower earnings base. If you might want to work part-time, first get the disability claim accepted. Then give it some time. And then, if you still want to work part-time, study your policy's provisions on what is often called "residual disability."

9. Keep it simple and low-key. There is some irony in this advice, given how complicated the whole thing is. What I'm trying to convey is that you should methodically go through the process step-by-step in the standard fashion. Other than my advice in point #5 above, try not to depart from the forms. Be straight with everyone. This is no time to be clever or creative. Don't engage in "doctor shopping." Don't find some naturopath, osteopathic doctor, chiropractor, nutritionist, tax protester or whackjob shaman to diagnose you with (my personal favorite) six different self-reported neurological diseases.* In line with #8 above, don't shift your activities into some other occupation. Don't move away while your claim is under review. Don't start calling the insurance company every week ranting and raving about this or that.

Why? Because you don't want your claim to attract an extra level of scrutiny. Claims examiners have two piles: The easy pile and the hard pile. If at all possible, you want your claim to land in the easy pile. Those are the ones that get approved fast and painlessly. The Japanese have a saying: The nail that sticks up gets hammered down. I'm thinking that they must have a lot of experience with insurance claims.

A corrollary is: Don't get greedy by trying to somehow arranging to double-dip when the rules don't allow it, or to work (above or under the table) and collect benefits. Or to file a bad back claim without it interrupting your weekly golf game. An old Wall Street saying applies here: Bulls win, bears win, pigs lose. Insurance companies are a lot like the telephone company: They look a lot dumber than they actually are.

(* As in, "I have Chronic Fatigue Syndrome, Migraine Headaches, Irritable Bowel Syndrome, Fibromyalgia, Fasciculations and Lyme Disease. How can those cruel bastards at the insurance company call it a mental disorder and limit my benefits to two years?" My response? "As much as I believe in telling the truth on the claim form, it might not have been such a good idea to mention that your symptoms appeared after the alien abduction.")

10. Have no illusions. Your insurance company is a financial institution, not a social service agency or a friend. They are not in business to do "the right thing," but rather to administer a type of contract known as an "insurance policy." It's not their job to dispense mercy, understanding or fairness, or to base any part of their decision on how badly you need the money. It is their job to live up to the contract. It's all you can expect, but you should expect it all. Oh, and along those lines, no matter how precarious your financial situation don't let them know about it. It will only weaken your bargaining position if there's a dispute.

11. Be prepared for the offset. If you're covered by a typical employer-provided insurance policy, you will be required to apply for Social Security disability as a condition of receiving full insurance company benefits. And if Social Security rejects your application, you will be required to appeal the rejection – typically at your insurance company's expense. If you win on appeal, you'll be required to reimburse the insurance company for the full amount of your Social Security back-pay award.

There is much more to say on the offset issue, but for now the important thing is this: It's (almost certainly) part of the contract. Which brings up #9 above. The insurance company is a financial institution that administers a contract. You get what the contract says you'll get, not what you consider "fair." Most people don't realize that an employer-provided disability policy typically pays the difference between Social Security disability and a percentage of your past employment income, usually 60% or 66%.

And if Social Security provides extra money for your kids as the result of your disability, that will also typically be deducted from the insurance company benefits. As long as it's coming from the government and it's paid on account of your disability, it's usually deductible. But remember, I'm only describing the typical policy, and you will need to read the details of your SPD to be sure.

(Note: I am informed that the offset issue is a hotbed of litigation lately. For more information, see The Social Security Offset posting on this website.)

12. If you're filing under an individual insurance policy, there are three main differences from what I've written above. The first is that instead of obtaining and reviewing the "SPD," you will need to review the policy that you purchased. The second is that most individual disability insurance does not have an offset provision of the sort discussed in #10 and therefore this will not likely be a consideration with respect to your individual policy claim. Thirdly, if you’ve got an individual policy it’s harder for them to argue with your doctors. The insurance company can still send you to that "independent" doctor for another opinion, but the legal standard for denying your claim is almost always higher than if your claim is under a group LTD policy. That’s the short version. The long version involves law books.

13. Lawyers: The Pros and Cons. If you’re worried that the insurance company might try to deny your claim, or if you're just really nervous (like I was) about the whole process, I highly encourage hiring a lawyer. It will cost $500 to $1,500 and is almost always money well spent. However, and this is really important, don’t be too quick to sign a contingency fee agreement. You’ll probably use the lawyer to do nothing more than read your policy, advise you on the process and review your applications. Valuable as this can be if you find a smart, experienced and diligent lawyer, it’s not worth a big retainer and 30%-50% of your benefits. It’s worth an hourly fee, most likely $150 to $250 an hour.

Also, keep in mind that once your insurance carrier knows you’re represented by legal counsel they’ll send most or all of the correspondence to your attorney, who then will wind up as (another) gatekeeper when it comes to information. I think it’s better to start with your lawyer in an advisory role as opposed to a representational role. If your claim is denied and you have to appeal your case or go to court, that’s usually the time for your lawyer to disclose his involvement to the insurance company -- and for the two of you to negotiate a contingency fee agreement.

Contingency fees in private cases range from 25% to 40% depending on the amount of the claim at issue. If it's a Social Security filing, government rules cap the lawyer's fee for representation at 25% of your backpay. Social Security appeals are discussed further in point #2 of the SSDI discussion below.

14. Lawyers and fees. If all the lawyer ever does is help you with the paperwork and explain things, don’t think that he or she didn’t earn $100 or $200 an hour. The best outcomes are when a lawyer helps you get what you want without anyone ever knowing you had one. When you hire an attorney you are paying not just for the person’s advice to you, but for all the expensive schooling and all the experience gained from all the cases he/she ever worked on. The best professionals make it look easy, but that doesn’t mean it was. So shut up and pay the bill. And no, I’m not a lawyer.

15. There are also disability claim consultants who aren’t lawyers. Some of them are great, but as with lawyers you need to be careful to examine a consultant’s experience and to pay close attention to fee arrangements. Don’t be squeamish about fees – not with lawyers and not with consultants. No one works for free. Discuss it.

16. Here is an excellent summary of court cases on some of the most commonly discussed and disputed legal fine points surrounding disability claims.

Social Security Disability Income (SSDI & SSI)

Thus far, thus guide has applied mainly to disability claims under private insurance. Social Security Disability Income is operated by the U.S. government and has a set of rules all its own. Briefly, an SSDI claim is similar to individual insurance in that they must pay attention (but not automatically defer to) your treating physician. If you can prove SSDI’s doctor’s wrong, you can sustain an appeal. On the other hand, SSDI’s definition of disability is more rigorous than most insurance companies. People who are capable of doing menial work can have their claim denied for that reason.

1. A multi-layered system. The first application for SSDI/SSI goes to a state agency that applies Social Security guidelines to your case. Approval rates vary widely by state. I am told that many Southern states have high rejection levels. Some areas within states have much higher rejection levels than other areas, and some places within a state take a whole lot longer to make decisions than other places in the same state. If your claim is rejected at the first level you can appeal it twice, eventually reaching a federal Administrative Law Judge. Overall approval rates for SSDI/SDI claims are 55%.

2. Lawyers. If you get rejected on your first try, you should hire a lawyer who specializes in Social Security Disability cases. If you also have a group policy from your employer, the insurance company will almost always pay for that lawyer. Be certain that you use your own lawyer, as opposed to one named or recommended by the insurance company. If you use their lawyer your claim details might be shared with the insurance company later on, and you could even find that their lawyer steers you toward a "mental and nervous" claim that then allows the carrier to invoke the standard two-year limit on group policy benefits.

3. Back pay. A SSDI/SSI claim can take anywhere from six months to four years to settle, depending on how many appeals it takes. If yours takes, say, three years to settle, you’ll get back pay to your date of disability plus five full months. If you used a lawyer in your appeal, he will almost always get 25% of your back pay. If you did all of this while your group policy was paying benefits, then you’ll be liable to pay the net back pay to your insurance carrier. But you will be able to keep the inflation increases that were tacked on during those three years.

4. Elimination period. All disability insurance, including SSDI/SSI, has an elimination period, i.e., a period of time when no benefits are payable. In Social Security, it’s approximately six months. You are eligible for SSDI/SSI benefits after five full months of disability. Example: You’re disabled as of January 12. Five full months start in February and run through June. The first month you’re eligible for benefits is July. You are paid one month in arrears, so if you were approved right away your first payment would show up in August.

5. Benefit level. It’s based on a percentage of your average earnings during the 10 years prior to your disability. (I think it’s about one-third, capped by the average of the various maximum income levels subject to Social Security tax during those 10 years). Once you’ve been approved for disability, the minimum benefit level is about $600 a month. If your earnings didn’t justify $600 a month or if you never worked outside the home, part or all of your benefits will be paid under a program called Supplemental Security Income, or SSI.

6. Children’s benefits. You can get up to an additional 50% of your benefits if you’ve got dependent kids. The money is sent to you, but you’re required to spend it for the care of the kids. Some people think they have to set up a separate savings account for the kids’ benefits, but that’s not true. You do have to keep records of how the kids’ share is spent, but you can allocate a portion of things like food, utilities and housing costs to the childrens’ benefit.

7. Inflation and Taxes. SSDI/SSI adjust your benefits for inflation every year. It’s a nice feature, and group disability benefits do not offset for the inflation increases. 80% of SSDI/SSI benefits paid to you are taxable. Typically, if you are living on nothing but Social Security you’ll be liable for no federal taxes, but if you get other taxable income (like taxable group benefits) it’ll be a different story. Any back payments from Social Security that are forwarded to insurance companies are untaxed. See IRS Pub. 915 for details.

8. Offsets. The average group disability policy offered through employers offsets for SSDI/SSI, along with any other government benefits such as veteran’s disability, worker’s comp or state disability benefits. Group offsets will include all money paid on account of your disability, meaning the children’s benefits. It’s in the contract. Remember what I wrote about insurance companies not being friends but rather administrators of contracts? If you had wanted additional income in case of disability, you should have read your group policy and gone out and bought supplemental insurance. So if you’re looking for someone to blame, find the nearest mirror.

9. Medicare. Once you’ve been collecting SSDI/SSI for two years, you are eligible for Medicare, which now includes the insanely complex Part D prescription benefit. Make no mistake about it, Medicare coverage is a big plus. If someone ever figures out Part D, please let me know.

Wednesday, November 29, 2006

The Social Security Offset

This is a companion to two other pieces on this site, Disability Insurance Basics and A Pragmatic Look at Filing a Disability Claim. They're long and there's some duplication, but if you're looking at disability you won't regret reading them. You might want to print out all three and read them in bits and pieces.

The following is a discussion of one of the most contentious issues connected with disability insurance, the practice of offsetting disability payments from government programs like Social Security against benefits paid by group disability insurance. Many people think they'll receive both SSDI and group LTD benefits, and are shocked to find different. Read on:

The Group LTD Offset Issue

Group LTD policies typically include offsets for Social Security Disability Income, Supplemental Security Income, state sickness programs, veterans’ benefits, private pensions and the like. There are seven things to say about offsets, and this posting is going to say them. I discuss the issue mainly in the context of SSDI, but the list of offsettable (a/k/a "deductible") sources of income usually includes all government programs, i.e., Workers Comp, and any pension plans private or public. One thing that’s not usually offsettable is benefits from privately-purchased individual disability insurance policies. Those benefits are typically paid irrespective of any other sources of income, and I’ve never heard of a government program or a Group LTD policy that reduces its payments on account of individual D.I. benefits.

What I have to say is on the blunt side, but I think it’s accurate. The fact that on this set of issues I'm on the side of the insurance carriers does not mean that I'm their p.r. guy. Fair's fair, and when it comes to offsets they are in the right. And for those who say that the insurance agent "told" them otherwise, well, I hope you’ve either got it on videotape or it was said in front of a whole lot of witnesses who were taking notes. Otherwise, what you were "told" + $1.50 will get you a tall coffee of the day at Starbucks.

First, your policy is a contract and its language governs. It's not about what you think is "reasonable" or "right." The insurance carrier is not your mom or dad or friend or minister or social charity or dispenser of truth, justice and the American way. The insurance carrier is a company that collects premiums and pays claims according to the terms of a contract known as an "insurance policy." It's about the contract. I say this so emphatically in hopes of heading off a bunch of wailing about the unfairness of it all.

People who don't like offsets can buy supplementary individual coverage. You never read that disability booklet they gave you when you were hired so you didn't know about any of this, you say? Not to put too fine a point on it, but whose fault is that, anyway? Of course, now it's too late for you to buy supplementary coverage, but it's not too late to tell your kids and your friends to read their disability booklets and think about supplementary coverage for themselves.

Second, if you do not have the contract language in your possession then you owe it to yourself to obtain it. You can do this by sending a certified letter to your former employer. Ask for a copy of the "certificate and summary plan description" of the disability coverage in effect at the time you became disabled. The SPD will answer the offset question, and just about every other question about the policy. In spite of my having just referred to that little booklet they gave you when you hired on, it is not adequate at this point. You need the SPD. You employer must provide it on request, so get it. Now.

Third, the typical employer-based LTD contract will offset for benefits provided by SSDI. The insurance company typically does not offset for cost-of-living increases provided by government programs, but it typically does offset government benefits (before any COLAs) provided to you and your children on account of your disability. From the insurance company's point of view, it doesn't matter whether the government pays you, your children or your dog, for that matter. As long as the government makes those payments on account of your disability, then all of those payments (including the kid's and dog's) are offsettable under the typical employer-based LTD contract. Like it or not, it's about the contract, remember? If you're thinking about how unfair it is, please see point #1 above.

"F" is for Fourth and for those F-ing lump-sum reimbursements. This is when, as a condition of being paid LTD, you apply for SSDI and eventually get a big check from the government representing back pay to the date of your disability. Your group policy says you've got to send that money to the insurance company. To add insult to injury, they call their past benefits an "overpayment," which I think just might be a plot to drive people to have strokes and heart attacks so they can quit paying you! What's next, a request to regurgitate the last two years of dinners because they were overconsumed with the overpayments? Sheesh!

Once you've climbed down from the ceiling about repaying the rich bastards at the insurance company, you might wonder whether, since SSDI is taxable, you'll be taxed on the lump sum that you never got to spend. By and large, the answer is no. Go to the IRS website and find Publication 915. If you use an accountant to do your taxes, mention it to that person. It gives all the details, but the short version is that the amount you pay back is usually fully deductible from your taxable income so it will probably be a wash as far as taxes go.

Fifth, if you had to hire an attorney to get the SSDI ruling, the insurance company typically pays the fee. The SSDI lump-sum will typically come to you net of the attorney's fee. In such cases, you pay back only the net award, which means the insurance carrier pays your attorney's fee. I say "typical" because there are some wrinkles, for example if you use a non-attorney representative or if you choose a lawyer that your insurance company won’t pay for. All of these things are discussed in the contract, which is yet another reason to get a copy of your SPD.

Sixth, even though the insurance carrier takes the lump sum, filing for SSDI was definitely in your interest. Let us count the ways. For starters, the insurance carrier usually doesn't take the cost-of-living increases, and over time those add up. Also, after two years on SSDI you become eligible for Medicare, which is a major benefit to people with chronic illnesses. And when you become eligible for SSDI, your Social Security retirement benefit calculation is frozen retroactively to the date of your disability. This stops the government from counting you as "unemployed" and cutting your future retirement benefits, which can make a huge difference over time. Bottom line: Just because it was in the insurance company's interest that you get approved for SSDI doesn't mean that it was a pointless exercise for you. Quite the contrary!

Seventh, I believe that your insurance company can't actually force you to write a check for the equivalent of your SSDI lump sum. The insurance carrier will ask you to write the check, or even to authorize an electronic debit from your checking account. Unless you have reason to believe they're going to cut off your benefits I generally think you should do so. But if push comes to shove, I believe they are limited to stopping your future benefits (often there's a minimum monthly amount that they'll still have to pay you no matter what, but it's typically a pittance) until the amount of your SSDI lump-sum has been fully paid off. However, the case law varies throughout the country, so before you rely on what I've just written you must check with an expert!

I am told that the retroactive repayment issue has recently become a hotbed for litigation. The issues are not only whether or not your carrier can require you to send them a check, but also whether it's legal for them to offset Social Security payments (both past and ongoing) made to dependents on account of your disability, even when it's in the contract. The cases get way into the tall grass, involving stuff like subrogation, actuarial data, state insurance commissions and astrological tables.

Caryn Montague will forget more than I will ever know about these issues. Besides being the moderator of the outstanding and invaluable Disability Insurance Forums website, she is a non-attorney disability claims consultant with a long and impressive background of insurance industry experience, knowledge and contacts. If I needed to know the latest scoop, she's where I'd turn.

And if you have a high tolerance for legalese, you could check this site or this site to see just how much ferment there is. However, I really caution people not to try to "play lawyer" on this stuff. When it comes to these issues, I am a very emphatic advocate of finding expert help. Wisdom is often a matter of not just knowing what you know, but of knowing what you don't know, and being willing to get help.

Tuesday, November 28, 2006

Disability Insurance Basics

This is a companion to two other pieces on this site, A Pragmatic Look At Filing A Disability Claim and The Social Security Offset. They're long and there's some duplication, but if you're looking at disability you won't regret reading them. You might want to print out all three and read them in bits and pieces.

Get ready for a complicated discussion. I’m going to make this as orderly as I can, but when it comes to disability insurance there is no way to be simple. There are too many details to cover for this to be an easy read, so you're going to need to print it out and read it in sections -- more than once. I've written it in terms of multiple sclerosis, but the information here is broadly applicable.

So, roll up your sleeves. I’m going to start with a sort of checklist of simple, general statements.


Prepare for disability
If you have multiple sclerosis, there’s a strong chance that you’ll eventually be disabled. I looked up some numbers from the Census Bureau a while back, and they showed that two-thirds of women and four-fifths of men with MS are disabled.

I think those percentages are too high, by the way. For a variety of reasons, doctors are catching more early, mild cases of MS than they used to. Therefore, I think the percentage of MSers who will be disabled is a lot lower than the Census numbers would imply. That said, if you have MS you still ought to think about disability. Maybe you’ll be preparing for a war that doesn’t happen, but that’s far preferable to being caught by surprise.

Get insurance now, if you can
If you’re reading this because you’re worrying about symptoms but you haven’t yet told a doctor about them, the very first thing to do is to get as much disability insurance as possible. Why? Because once you’ve told a doctor about your symptoms, you’ve almost certainly made yourself off-limits to most disability insurance companies. They want to sell insurance to healthy people, not to sick people. So get on the horn to an insurance agent. Pronto!

A diagnosis is not a disability
You must have the disease and be unable to work according to the rules of whoever pays your benefits.

Your doctor must be on your side
When it comes to going on disability, your word isn’t enough. Someone else has to agree. One of them must be your neurologist, and another one should be your primary care doctor.

Read your insurance policy
When it comes to insurance companies and disability, forget about those "like a good neighbor" ads on TV. They’re not your family, or your friends. They’re financial companies that collect premiums and pay claims according to their contracts, which are known as insurance policies. You get what the contract says you get. Your need for the money is irrelevant, so don't expect the insurance company to pay special attention just because you need the money really bad.

A related point. If you become disabled,
make sure to get a copy of your LTD policy. I'm not talking about that little booklet, I'm talking about the big kahuna. It is known as the "Summary Plan Description," or SPD, and it typically runs for about 20 or 30 pages of fine print. Ask your human resources department for a copy of the SPD for the disability coverage in effect at the time you became disabled. If they don't send it, then send them a certified letter asking for the SPD. Federal law requires them to provide you with this document upon request, and there are substantial penalties for non-compliance.

Social Security is an insurance policy, too
The only difference is that Social Security is funded by the taxpayers and administered by the government. When it comes to benefits and rules, it works just like an insurance company.

Get a lawyer
Most people hire lawyers when it’s too late to do any good. It comes from watching all those TV shows where the lawyer saves the day at the last minute. I am strongly in favor of seeing a lawyer before submitting any claim forms. Find someone who is experienced, diligent, and reasonably sympathetic. Always interview at least a couple of attorneys. Ask about the fees up front. Once you’ve agreed on the fees, pay them. These people have to eat, too.

My lawyer said he has the hardest time collecting when he got the benefits without ever going to court. Clients try to argue that he didn't do anything special. Have you ever heard anything so stupid in your life? Here's the deal, cheapskates: When you hire a lawyer you are hiring every case he ever worked on. And the best professionals regardless of what field they are in make it look easy. Pay your bill.

It’s O.K. to go on disability
If you’re guilty or embarrassed about going on disability, far be it for me to dictate your feelings. All I’m going to say is that, like all those handicapped parking spaces out there, disability insurance exists for the disabled. You’re not required to work until you drop dead. If you’re still worried, see a shrink. Pay cash and don’t give your real name. If you're still feeling guilty, try reading my essay on guilt.

Dry your tears, honey: Keep your wits about you
Now is not the time for emotion. It's time to read your policy and have frank discussions with doctors and lawyers, and to do it
before you file your claims. When it comes to talking with the insurance company, the less said to them the better. You're much better off dealing with them in writing, as opposed to calling them up.

Oh, and about that lawyer. It is very much in your interest to keep him in the background. Don't go threatening your insurance company with a lawsuit. You think it will scare them? Come on, they have all kinds of lawyers on staff just looking for something to do. All it will do is slow them down while they triple-check everything and ponder what sort of idiot would think they'd be scared of a lawyer.


O.K., now for the complicated stuff!

There are three major classes of disability insurance. Please keep the acronyms clear in your mind (or write ‘em in big, bold letters on your printout), because I’m going to be using them throughout and you don’t want to get them confused!

Social Security Disability Income, also known as SSDI
If you've been paying Social Security taxes, you're probably covered. The benefits vary according to how long you've been employed and how much you've been paying in Social Security taxes. There is no "means testing," meaning that if you're eligible you get SSDI regardless of how much other income you have. The only people not eligible for SSDI are those who haven't worked long enough, along with some state and local government employees covered by their own systems. Those who aren't eligible for SSDI or other programs should look into Supplemental Security Income, also known as SSI. That's a federal program for people who have little or no other income and not much by way of assets. It pays a pittance, but it's better than nothing.

Group long-term disability insurance, also known as LTD
If you’re working, there’s a good chance that your employer provides LTD, most likely through an insurance policy. Many employers also provide short-term disability coverage, either through a separate policy or as a consequence of sick-leave policies.

Individual disability insurance, which I will call DI
People who don’t have LTD sometimes also buy DI. Others who make a lot of money frequently buy DI to cover the gaps in LTD and SSDI.


Most people have a group LTD policy offered through their employer, and because they are working they are also covered by SSDI. For efficiency’s sake, I’m going to talk about SSDI and LTD together. This is because, at least financially, they usually work hand-in-glove. Here’s how it starts: You and your doctor decide you’re disabled. You resign from your job. You file a claim with your insurance company and with Social Security. And for the next several months, you don’t get a lot of sleep as you worry about whether your claims will be approved.

If you have typical LTD insurance, it will pay either 60% or two-thirds of your pre-disability earnings to a maximum level, often $5,000 or maybe $7,500 a month. Now here’s the kicker: Almost all LTD policies count your SSDI as
part of the two-thirds of past earnings. This means your LTD benefits are reduced by whatever SSDI pays. Some people go crazy when they find out about that. But remember what I wrote above about reading your policy? If you had wanted more coverage, you'd have bought it.

You didn't know? Never thought about this stuff? Okey-dokey, but whose fault is that? When you started on the job they gave you a little booklet concerning your disability insurance benefits. You know, the one you tossed in the bottom of your desk drawer and told yourself you'd read someday? Yeah, that one. So if you're looking around for someone to blame because you didn't have enough insurance, might I suggest finding the nearest mirror?

When you file for LTD, your policy will require that you also file for SSDI. If you fail to do this, your insurance company will simply deduct your potential SSDI benefit from whatever they pay you. This is because the LTD policy really is insurance for
the difference between SSDI and whatever percentage of your past income mentioned in the LTD documents.

Let’s imagine you filed your SSDI and LTD claims on, oh, January 1st. The insurance company will probably make its decision on your claim by March 1st or April 1st. If you’re really lucky the government will go that fast, too, but it’s quite possible that Social Security will deny your claim and give you the run-around. These run-arounds have been known to last for years on end. I know a guy who waited for just short of a decade. Let me hasten to add that this is rare. Really rare -- although if the Republicans get away with squeezing Social Security like they want to, maybe it will become less rare. Hard to say.

If you have LTD and if your insurance company has accepted your claim, guess what? If the government rejected your claim, LTD will pay the
entire percentage of your working income specified by the policy including the government’s share. But there are some conditions attached. One is that you must appeal any government denial of benefits – with the insurance company paying for a lawyer to represent you. Secondly, if the government eventually decides in your favor and awards you back pay for the benefits that had been denied, that money belongs not to you but to the insurance company.

(Important: For complete detail about the offset issue, see The Social Security Offset posting on this website.)

Some people get really mad about sending the government’s back-pay award to the LTD carrier. These people conveniently forget who was paying the government benefits while they were waiting for their appeals to be heard. And they didn't read the LTD policy, and you know how I feel about people who don't bother to read their insurance policies. A side note: The back-pay award from Social Security is taxable, but a reimbursement to the insurance company is tax-deductible. In other words, it’s a wash. Bottom line: If you’ve been collecting LTD while waiting for SSDI, don’t spend the back-pay award. It’s not your money.

At this point, you might be wondering why you should have bothered to appeal a government benefit denial in the first place. The LTD carrier will pay the full amount anyway, so what’s the difference? Well, there are several answers. The first answer, of course, is that your LTD policy will
require you to appeal. But there are two powerful reasons why it would be in your interest to appeal even if that requirement didn't exist. And there’s a third reason that’s less powerful at the moment, but still relevant.

You see, SSDI isn’t just about disability. There’s a five-month waiting period before you’re eligible for SSDI checks. Once you’ve been eligible for 24 months, you also qualify for Medicare. For an MSer and just about everyone else with an expensive, chronic disease this is a big, big deal. Medicare isn’t perfect, but it’s one hell of a lot cheaper than regular health insurance. And they can’t cancel you. The other powerful reason is that, once you’re declared disabled by Social Security, you’re treated as if you’ve retired. If not for that, the formula for calculating your eventual retirement checks would have considered you unemployed rather than disabled, and your future retirement checks would be cut way back.

The third reason to appeal a negative ruling is currently less powerful than the other two, but you never know what will happen. SSDI benefits are indexed for inflation. LTD benefits rarely are indexed, but LTD will not keep cutting its benefits to counteract SSDI’s inflation adjustments. As time goes by, this could matter more than you think! For example, let’s say you made $60,000 a year at the time you were disabled. Under a typical LTD plan, you’d get a total of $40,000 a year, which is $3,300 a month.

About half of that would come from SSDI, and it would grow with inflation. Anyone remember the 1970s? Half protection is better than no protection. If you don't want your COLAs, please send me an e-mail and we can arrange for you to send me the money. I promise to give it to charity, my favorite being a certain distillery west of Edinburgh.


Definition of disability
How are you judged to be disabled? First a general statement. As I write, people with MS are being treated pretty well by most LTD carriers and by Social Security. I haven’t heard about too many denials of claims. But you can never pay too much attention to this issue! Typically, SSDI will cover MSers who have serious mobility issues, heavy fatigue, or severe cognitive deterioration as documented by neuropsychology testing results. Your status will be reviewed periodically, ranging from every three years to longer.

LTD carriers will typically pay full benefits for two years of inability to perform the major duties of your own occupation. After that, they’ll see if you’re able to perform the major duties of any occupation for which you are qualified by training, education, or experience. Typically, you have to be realistically capable of earning at least two-thirds of what you earned when you were working, and that threshold is usually adjusted for inflation. Some helpful advice from a former insurance executive now disabled by MS: Make certain that all of your symptoms are documented by your doctors, especially fatigue.

Here's another little gem: When you're filling out the claim forms, you'll notice that they usually give you one or two lines to say what you did for a living. Now, the fact that they give you so little space doesn't mean you have to use so little space. Just write "see attachment" on that line. Write a separate statement that goes over your job duties in loving detail and submit it along with the forms. Have your lawyer look at it, and maybe run it by your doctor.

Waiting peroids
You start with your disability date, which is usually the day you stopped working. That's when the clock starts ticking on the waiting periods, which in private policies are also known as "elimination periods." LTD typically has an elimination period of 90 days. This is so you don't double-dip from other sources of income like sick pay or, for those who get it, STD or short-term disability coverage. Social Security pays benefits starting in the sixth full month of disability; in other words, it has a waiting period of five full months. Some LTD policies will say 90 days from your final paycheck.

Let's take SSDI and the five-month waiting period. Imagine your disability date is June 17th. June doesn't count as a full month, so your waiting period consists of July, August, September, October and November. Your first benefits are payable for December. Social Security (and lots of insurance policies of all kinds) pay one month in arrears. In this example it means you get December's check in January.

When it comes to DI (discussed in the next section), the elimination period is one of those negotiable features that goes into the price of your coverage. You can buy a 90-day elimination period, a 180-day elimination period or something even longer. Chances are if you're buying DI in addition to your other coverage, you can afford to wait a little longer for that first check. A lot of people buy a 180-day wait in return for a lower premium.

Taxation of benefits
80% of SSDI benefits are taxable at whatever the tax rates are at the time. LTD premiums are cheap, which is why employers are usually happy to offer the coverage. The benefits are taxable if your employer paid the premiums. But if you pay the premiums, or if you have been careful to declare their value as taxable income every year on your 1040 form, then your group LTD benefits will be non-taxable. The tax law has recently changed in such a way as to make it easier for companies to include the value of premiums in an employee's taxable income. I strongly recommend either paying your own LTD premiums or having your employer add the premiums to your income. Talk with your personnel department. It could be the smartest thing you ever did.

Appealing benefit denials
SSDI has a multi-stage appeal process. At the first stage, all claims are handled by a state agency. Denial rates vary quite widely, with some states being notorious for denying just about every application on the first try. Eventually, the appellate process reaches a federal level, and ultimately about half of all claims are accepted. I have never heard of an MSer whose SSDI claim was ultimately rejected. But it could take quite a while, and if you’re not getting LTD in the meantime it can be a rough road.

Lawyers who handle SSDI appeals are limited by federal law to charging 25% of your award. If you’re also on LTD it doesn’t matter; the insurance company will demand repayment of your back-pay award after the lawyer’s share has been deducted. If you didn’t have LTD, the 25% lawyer’s share comes out of your own pocket. I realize this is a hardship, but I urge people whose SSDI claim is denied to hire a lawyer. In fact, I think it’s a good idea to see a lawyer before filing it – but then I’m a cautious sort.

On the LTD front, appeals can get hairy, and I’m going to discuss those issues in the next section.


You typically buy a set benefit amount, such as $5,000 a month. A healthy person in his or her 30s would usually pay an annual premium of one-third the monthly benefit. Thus, a benefit of $5,000 a month might cost $1,700 a year or so. Straight out of your own pocket. Expensive! No wonder it’s not very common, but DI is great insurance for a variety of reasons.

For starters, because you pay the premiums yourself the benefits are non-taxable. Secondly, they don’t affect benefits from any other source. If you are eligible for $5,000 a month in DI benefits, you can still collect your full SSDI, your LTD and be eligible for Medicare. Thirdly, there are multiple "riders" available, such as the ability to inflation-adjust or otherwise increase your benefits, or have the coverage not just to retirement age but for life. Fourthly, DI is typically "own occupation" insurance. If you’re a computer programmer and your MS prevents you from doing the duties of your job, you get the benefits even if you can – and do – wind up in an occupation with different duties.

Finally, because different laws cover DI and LTD, it’s a lot harder for a carrier to deny a DI claim than it is to deny an LTD claim. Take Aetna Insurance, for example. They sell LTD to employers and DI to individuals. There is documented evidence that Aetna told its claims reviewers to be tougher on LTD claimants because the law makes it a whole lot harder to appeal an LTD claim denial.

There are whole books written on the differences, but I’m going to boil it down. DI is covered by state law, and states are usually tough on insurance companies. Why? Because in most states, the insurance commissioner is an elected official. Under state law, if an insurance company acts capriciously or outrageously, the claimant can sue for the benefits not paid plus for punitive damages for the carrier’s "bad faith." LTD, on the other hand, is governed by a federal law that specifically prohibits bad-faith damages. No matter how outrageously an LTD carrier acts, you can only get what you were owed anyway. Not a lot to deter outrageous conduct, and the insurance companies know it.

Beyond that, state laws usually require DI carriers to come up with plenty of proof before overruling the opinion of your doctors with respect to your disability. Federal law is a lot easier on the insurance companies. Even if they wrongly deny your claim, that denial can be upheld if they can show that they acted "reasonably" when they made the error. Talk about a loophole big enough for a semitruck! But this is what the U.S. Supreme Court has decided. And they’re right to have decided it that way, because the federal law is clear on the matter.

The law, incidentally (accidentally?), is called the Employee Retirement Income Security Act, or ERISA. It has been denounced ever since it was passed in 1974 as a "reform." But no one can ever get it changed. Not that the insurance companies have lobbied Congress to keep it just as it is. Nope, nothing like that would ever happen in America. That said, however, I haven’t heard of MSers being denied too often under ERISA. But that’s no guarantee! Oh, by the way, when it comes to your doctors and their opinions, Social Security uses pro-claimant rules similar to those used by DI carriers.

I hope I haven’t lost you by now. I told you it was complicated, and I’ve only scratched the surface! Do you see why I hired a lawyer at the front end of the process to advise me on how to fill out the forms? Glad I did, too, because three insurance companies and Social Security accepted my claims on the first try.


Get as much as insurance as you can
If you haven’t seen a doctor yet but suspect MS or something else that’s serious, the first person to call is a DI agent. Get as much individual DI as they’ll sell you. In fact, if there’s nothing wrong with you it’s a good idea to have DI. I had it for a decade before using it, and it took two months of benefits to get all my premiums back. (Oh, and don’t lie on an insurance form. They’ll find out.)

Read your insurance policies
With LTD, the booklet from the employer will be enough to give you a general idea of the coverage. A request for the full policy, while being your legal right, could serve as a tip-off that something’s wrong. Employers have been known to fire people if they think a serious medical issue is coming up! But once you go out on disability, make sure to obtain a copy of the Summary Plan Description of the coverage in effect at the time of your disability.

Start a medical file
Save all doctors' notes, reports, and copies of MRI films and other test results.

Make sure your doctors document your all of your symptoms
Especially fatigue. You can help by making a one-page, bullet-point list and giving it to your doctors at every visit.

Don’t cut your work hours
Do not drop back to a part-time schedule in hopes of being able to stay on the job. All you’ll accomplish is the reduction of your future disability income. If it turns out you can work part-time in the future, you can return to work and your LTD and DI policies will likely make up a bunch of the difference between your former earnings and your part-time income. Now, doesn’t that sound better?

By the way: If you have one of those high-pressure jobs where you work 60 hours a week, keep something in mind. Disability policies tend to say that you’re disabled if can’t work 40 hours. They don’t insure your ability to work like a dog.

Pay attention to the tax issue
Either pay your LTD premiums yourself or declare your employer’s payments as taxable income so your benefits will be tax-free. Oh, do I ever wish I had thought about this!

Lose the emotion
Especially the guilt. Look, the MS is going to do what it will do. Filing a disability claim is about the money, not the disease! And do not, not,
not call your insurance carrier crying about your desperate need for the money. Who do you think they'll stiff-arm first, a person who's on the brink of bankruptcy and can't fight back, or someone who is calm, cool, collected and shows every sign of being about to sustain a long fight?

For more information
For Social Security info, go to their website for more information. When it comes to LTD and DI, this site is outstanding. People will often give you a bit of advice there on SSDI too. And one last thing: Everything I've written is the result of my experience and my reading on the subject. But I'm not a lawyer, an insurancce agent or a government official. So proceed at your own risk, because I'm not guaranteeing the accuracy of any of this.

Monday, November 27, 2006

Advice to the Newly Diagnosed

Before talking about treatment, let me give you the best general advice I can muster:

  • Find doctors you trust and then listen to them. Sometimes you have to change doctors, but doctor-shopping is highly stressful and unproductive.
  • Get a neuropsychological evaluation. Have them do the full, eight-hour battery and make sure to keep a copy of the report. This will serve as a "baseline" against which future results can be compared. Neuropsych tests will strike you as really simple, even juvenile. But they are extremely revealing, and you'll want to get it repeated from time to time in the future.
  • Start a medical file. If you don't have one already, that is. Get copies of all records, reports, treatment notes and test results and of your MRI films and put them in a safe place.
  • MS is not a death sentence. It's absolutely o.k. and understandable to be shocked and worried, but you almost certainly have got a lot of good years ahead of you. Don't let this ruin your life. It is manageable.
  • Hang in there. Persistence matters more than just about anything else. Trust me on this: You get points in life for just showing up!

The ABCR drugs (so named because they consist of Avonex, Betaseron, Copaxone and Rebif) do not work 100% of the time. They have been well studied, and the results show that, in the aggregate, people who take one of them have fewer new lesions, exacerbations and progression than people who don't take them. But there is absolutely no guarantee that any of them will work for any particular individual. And they have various side effects depending on which one you take. Most people find one of the ABCRs whose side effects they can deal with.

Note: There is a fifth drug called Tysabri that was introduced by Biogen, the maker of Avonex, in late 2004. I didn't take it. I had two reasons. First, I was suspicious of the drug companies in general and doubtful of the FDA's independence. Second, I had read that this drug pierces the so-called blood-brain barrier, which separates your brain from the rest of your body. I was worried that there might be some nasty infections as a result.

Within a short time of that drug going into general use came the news of several deaths from bodily infections that had jumped the blood-brain barrier. Now Tysabri is off the market. But I don't feel vindicated. I feel sad about the whole thing. Maybe they'll do more work on the drug and find that it is safe in some instances. But until they do, I'm staying away from it.

There are various alternatives to the ABCRs, just about all of which get praised, scorned, promoted, denounced and debated. With the alternatives there is not only no guarantee of them working, there is also no evidence that they even work in the aggregate. Here are some good links to read about the alternatives:

So, when it comes to drugs you have the choice of whether or not to take an ABCR and whether or not to take an alternative. There's nothing that says you can't do both at the same time. With respect to alternatives, my personal opinion (and only that) is this:

  • Discuss it with your doctors. They can tell you whether an alternative will hurt you. Some of them are dangerous.
  • Stay off of bandwagons. Some alternatives are promoted with rhetoric about the big bad drug companies and the evils of Western medicine. This is a red flag that usually hides a scam. A double red flag is when a purveyor of an alternative suggests that you drop the standard treatment and use the alternative instead.
  • Don't pay a lot of money. Alternatives shouldn't cost too much.
  • Stay away from harmful substances. For example, if someone advises you to take mega-doses of a particular vitamin or mineral, you need to know whether it can do some harm. And forget about "secret formulas" of any kind, including "Chinese herbs." Some purported MS "cures" are nothing more the amphetamines or other psycho-active substances.
  • Keep your expectations in check. The facts are these: No one really knows what causes MS. Treatments are still hit-and-miss. No one can cure it. The drug companies are required to tell you this, but the purveyors of alternatives can and frequently do make outlandish claims.
  • Don't confuse virtue with treatment. You'll encounter a wide variety of quasi-religious approaches, ranging from ways to remove stress and bad karma, to the power of positive thinking, to radical diets that just happen to be benevolent to animals. Be a Buddhist or a vegan or a newly-minted saint if you want, but don't imagine that it will have any impact on the course of your MS.

I wish you the very, very best. People really care, and we all understand how scary it can be. Oh, and here's a great website for support and information to help you through it all.

Sunday, November 26, 2006

Disabled? Don't Feel Guilty

"It’s your own damn fault that you’ve got MS. Not only are you fat and lazy, but you’re probably faking it anyway."

It’s not likely you’ll hear anyone put it quite so bluntly, but all too many MSers get exactly that message in a different wrapper from their oh-so-concerned loved ones, or from the latest TV show about the dynamic personality who has "overcome her illness" with the help of prayer, a sunny disposition, regular participation in the Boston Marathon and weekly espresso injections.

Guilt and its mongering take many forms, and some of them are truly insidious. We’re a fairly sophisticated society these days – or at least we think we are -- so you don’t hear too many preachers ranting about MS being God’s judgment on a misspent life. That particular tactic is reserved for AIDS and other illnesses that strike at people who, in the eyes of some, have it coming. So let’s thank the Deity for small favors: MS isn’t sexually transmitted, passed through IV drug use or disproportionately found among liberal atheists. At least we can listen to talk radio without fear.

But that doesn’t necessarily keep the other forms of guilt tripping at bay. My personal favorite is "stress." Tell someone you’ve got MS and it won’t be long until you’re asked about your divorce, whether you work too hard (as if you had a choice), whether you were ever cut out to be a mother or whether your granddad’s death was the final straw. This invariably will be coupled with heartfelt advice to "avoid stress" from now on.

Sounds reasonable, doesn’t it? Everywhere we look, we’re told that stress causes illness. MS is a really bad illness, so there must have been a lot lotta shakin’ going on. Yep, the stress did it. Must be.

What’s usually left unsaid, but clearly implied, is that if you’d only avoided that stress you wouldn’t be in this boat. Ergo, it’s your own damn fault. And if your MS should happen to progress – as it usually does, incidentally – well then it must be because you insufficiently avoided stress. Not that the implicit guilt trip adds to anyone’s stress.
Moi? Why, I was only trying to help!

A kissing cousin of the stress rap is the positive attitude mantra. Be of good cheer! Look on the bright side. Visualize your happiness. Rise above your limitations. Translation: You’re bringing it on yourself, and oh by the way, I really don’t want to hear about your troubles. They’re too depressing.

Like all mythology, there’s a grain of truth in all of this. Someone who burns the candle at both ends is probably going to have more trouble with her MS symptoms than someone who gets eight hours of sleep. And there’s a fine line between candor and playing the sick role like a fiddle to put everyone at your beck and call. That said, stress doesn’t cause MS. Smiles, be they forced or genuine, won’t cure it. The author of
Laughter Is The Best Medicine is dead. He is buried next to a lifelong curmudgeon. What's even worse is that we're all going to die.

My best friend’s sister has MS and she doesn’t let it get to her. She even jogs five miles a day. She says exercise is her cure. In other words, you’re malingering. The kind souls who deliver this message – too many of whom are entertainers eager to base their otherwise declining careers on being poster children for this or that disease – have never stopped to consider that MS is a highly variable illness. Oh, by the way, the "best friend’s sister" has a mild case of MS. Good for her, but plenty of other people have it bad.

Denial has another face: The unsolicited testimonials for the latest miracle therapy. Someone’s brother drinks a quart of flaxseed oil every week. A co-worker gulps down a special juice drink with a chaser of 10W30 motor oil. Did you read about that new drug that’s going to cure it? I ran into a guy at my high school reunion whose wife buys bees from Kansas and has them sting her every other day. He says she started walking again. I can give you her phone number if you want it.

What’s really going on here is a mixture of squeamishness and fear. We might regard ourselves as sophisticated, but human beings are afraid to die and a lot of people lash out at anything, including disability, that reminds them of their mortality. Every culture expresses it differently, and in America it’s seen through a relentless focus on "curing" or "overcoming" disease and handicaps. And we are tinkerers to the Nth degree. I made this in my basement. Try it! What have you got to lose?

There's a whole lot of good in these impulses, by the way. Let’s all hope someone devises an MS cure, and if winds up being a specially brewed beer delivered via an enema tube I’ll be first in line. But for now, we have a disease whose cause is unknown, whose effects are maddeningly unpredictable and that has no cure. In other words, we have a chronic illness. Americans are terrified of the chronic. It reminds us of welfare. We want to fix our problems, and if we can’t fix them, we can get pretty weird about it.

For those who don’t have MS but are reading this perhaps because a loved one or friend does, I have some friendly advice by way of Bob Dylan:

Take care of all of your memories, said Nick
For you cannot relive them
And remember when you're out there tryin' to heal the sick
That you must always first forgive them.

So quit the guilt trips. No one knows what causes MS, so we really don’t need or appreciate any amateur psychoanalysis about our sources of stress. There’s no cure, so don’t tell us about the "detoxification" program you read about in some magazine or how a positive attitude can make an illness disappear.

We’ve got our good days and our bad days. On our good days, greet the day with us. On our bad days, put up with us and maybe offer to do the grocery shopping or something else that might be useful. Above all, just be there. Notwithstanding everything I’ve written up to this point, don’t kill yourself if you say the wrong thing every now and then. We’ll get over it. No one’s perfect. Really.

To MSers, some friendly advice. Don’t buy into any of those guilt trips. If someone tries to lay one on you, try to be gentle. These are usually teachable moments. Most people say the wrong thing because they don’t what else to say. Just tell ‘em that no one knows what causes MS and no one has found a cure. You’re doing the best you can, and that’s going to have to be good enough.

If someone asks how you’re feeling and the truth is "not too good," then say so. Briefly. If you need help ask for it, and when you get it say thanks. If you need a cane or a scooter, use one. If you need some rest, lie down and have a nap. Above all, if you want to have a steak, a dish of ice cream and (horror of horrors) a cigarette or two after you’re finished, don’t let anyone or anything stop you.

It’s not your fault!

Saturday, November 25, 2006

My Story

I was diagnosed with MS in the summer of 2002, at the age of 44. My diagnosis was made after several neurological exams, a series of MRIs and a spinal tap. MS is often misdiagnosed or ignored in the early stages. This was the case with me. In 1991, I went numb up to my chest and the doctors couldn't find anything wrong. I was tired throughout the '90s but attributed it to my intense work and travel schedule. Then in 2002 all hell broke loose -- paralysis, loss of bladder control and weird cognitive disturbances like not being able to add and subtract.

Finally, I went
Aha! I bet I know what this is. I called the neurologist I had seen in 1991 and said doc, I think I have multiple sclerosis. How did I know? Because one of my cousins has it and sometime in the late '90s we got to talking about his case and I thought to myself, Uh-oh. And then I tried to put it out of my mind.

The neurologist didn't remember me. He has been such a nice guy in 1991 but he was a total jerk now. It was really shocking. There I am, sitting in his office scared out of my mind and he literally snaps his fingers and tells me to hurry up with the talking. I could have punched his lights out or started crying but instead I held it in because I knew I needed this guy. He did all the lab workups and lo and behold that's what I had. Then I found another neurologist who wasn't a total dick. Neurologists are some of the oddest ducks in all of medicine is all I can say. When I saw the second guy and told him about the first guy it was all I could do to keep from scraping him off the ceiling.

I said,
Doc, doc it's not about the other guy and what an asshole he is, it's about me. Finally he said yeah you're right. Now let's get you on Avonex, one of four drugs that have been approved to treat the disease. This involves giving myself a shot once a week with a needle that looks like it will go all the way to China.

MS is a funny disease. Not funny ha-ha but funny unusual. Think of a tornado that skips through a town. Every tornado worthy of the name takes out the trailer park, but from there you don't know what the hell will happen. Some of them get the church, one tavern and the school house, and others get the police station two gas stations and the stop sign at the corner of 3rd and Main.

The trailer park is usually stuff like optic neuritis (weird visual symptoms including deep eye pain that's really excruciating), walking disturbances, memory problems, heavy fatigue and numbness. Most MSers have those things to some degree. The memory stuff, by the way, is a newly recognized symptom. Used to be that it was all about the walking, but now they seem to know better.

Past those things, it can be anything. And why not when you really think about it. I mean, MS is when your body eats the covering ("myelin") off of your nerves. It's like cockroaches eating the insulation off the wires in your house. The same thing happens in each case: You get short circuits, and they're totally unpredictable.

One of my favorite short-circuits is with math. I suddenly couldn't figure out how much of a tip to leave at the restaurant. Okay, I know it's 15%-20% but the calculation is the issue. I used to be a financial analyst for crying out loud, but now I couldn't figure out 20% of $225? Come on, what gives? I still remember talking to a guy one day and telling him that 9 times 7 = eighty-something. As I sit here and write, I don't know what 9 times 7 is.

No great tragedy I guess, but it's a little weird when you're a financial analyst and your work depends on you knowing what 9 times 7 is. And it's a little humbling. Almost as humbling as discovering that you've voided your bladder all over yourself and didn't know it. Did you know that
The Wall Street Journal makes a suitable coverup when you're trying to get out of the office in your piss-stained suit?

So anyway, back in '02 when I got diagnosed I took a deep breath and said I can't work. Time to dust off the disability insurance policies and see what's inside. Turned out that I should be in the Guiness Book of World Records as the only American to ever have his insurance coverage substantially improved without his knowledge or consent. The coverage was excellent. All I needed to do was document the hell out of my case and file for benefits.

Since then, my partner Don and I moved from Boston to Seattle. We had been together since 1986 and for a while we had lived in Seattle until the firm I worked for sold to another company and I was tossed out of my job. This meant finding a different job and moving to Boston, but when we did that I managed to keep the house in Seattle and rent it out. We had always wanted to return here, but didn't think it would be so soon.

We got back to Seattle in late 2003, and soon Don's health took a drastic turn for the worse. On Sept. 22, 2004, he died of the combined effects of AIDS and chronic alcoholism. I have been on my own since then, but I'm hanging in there, full of piss and vinegar as always. I think my curmugeonhood is what keeps me going. I had one boss who told me that a different boss had been scared of me because he never knew what I'd say next. Yet a different boss said I was known for not suffering fools gladly.

All of those things are true but chronic illness and the death of one's longstanding partner, who I loved with all my heart, will soften even my roughest edges. Life is different these days, and in some ways it's better than it ever was. But there'll be more to say about that later on.


In 2006-2007, I found another partner. We live together in Seattle with our three dogs. We are one big, happy herd. In some ways he's very different than I am, but in the most important ways our hearts beat together as one. Besides, if someone wasn't different then you'd be in love with the guy in the mirror, and how boring would that be? Plus, he makes me laugh at myself, and God knows I need to!

Sunday, November 12, 2006

I Have A New Rabbi

(Note: This entry works best over a broadband connection. There are two songs linked. Click to open them in a separate tab or window, and have your speakers on. The songs will load automatically, but you need to be sure the one finishes before you click on the other or you will be hearing two songs at once. Also, I want to give a "profanity alert" for the link from the phrase "unbearable yellow ribbons" in the narrative.)

I have had better years than 2002.

It started with a bunch of weird symptoms. Once, I pulled over on the Mass Turnpike in agony from optic neuritis; I even looked in the mirror to see whether there was something in my eye, like a knife. Several mornings, I woke up unable to move. I pissed all over myself and then crept out of the office with a copy of The Wall Street Journal covering the stain.

I landed in a city not knowing why I was there or where to go. I'd stumble around and not recognize co-workers, one of whom later told me that he had wondered why I was drunk at 8 in the morning. I would find myself sitting in front of clients unable to understand or explain the material I had just given them.

The doctors figured out that I had multiple sclerosis. I quit my job, and then worried like crazy about whether my disability insurance carriers would find a way to stiff me. It didn't help when I turned on 60 Minutes and saw a story about how Unum Provident rejected a disability claim from an eye surgeon with Parkinson's Disease. (My idea: Force Unum's CEO to use that doctor to get his cataracts removed. Both eyes.)

In the midst of this twisted circus, I attended a block party in the suburbs of Boston and found myself seated next to an nice old man who drooled and talked as if he was mentally impaired. His name was Leonard and he was a retired rabbi. He had suffered a stroke, and what I was seeing represented a major recovery for him.

I told myself I'd be polite and move on as quickly as I could. Immediately, a little voice said, You have just been diagnosed with MS, you selfish jerk. You are going to sit here and give this man your complete attention, and hope that whoever runs the universe will forgive you for what you were just thinking.

Thus began a beautiful friendship with a wonderful man who, stroke or no stroke, could think circles (and squares and triangles and octagons and ellipses) around me. We discovered a mutual affinity for chess. Soon, we were playing every weekend, Leonard typically kicking me up one side of the chessboard and back down the other while we lamented the disaster that was (and still is) George W. Bush and his Iraq war.

I learned all sorts of things, among them that the Spanish and Portuguese inquisitions weren't merely the over-exuberant enforcement of orthodoxy I had learned about in Catholic grade school, but vicious exercises in anti-Semitism perpetrated on the descendants of Jews who had been forcibly converted to Christianity a century or more earlier.

To proclaim one's innocence was to prove one's guilt. To defend the accused was to be guilty by association. Sound familiar?

Leonard Zion was a poet, a thinker, a reader and a teacher. His goal was to read every book ever written. The word rabbi means teacher. I told a Jewish friend about my rabbi, and he replied, What, you've converted?! No, I replied. I have gained a teacher and one hell of a chess opponent.

Oh, and I guess while we're on the subject of Leonard Zion I ought to mention that he established Indonesia's cooperative education system, which puts promising university students into apprenticeships in major corporations there. He knew many of that country's leaders. When Leonard's son died, the Muslim daughter of one of Indonesia's leaders flew halfway around the world to be at a Jew's funeral. But, hey, what's the value of diplomacy, anyway? Indonesia is the fourth-largest country in the world, you say? Who cares? They're Muslims.
Bomb 'em.

Leonard's stroke left him speechless for the better part of a month, during which time his wife of nearly 50 years, Deborah, sat by his bed talking and reading to him. When he finally spoke, he talked so much that Deborah eventually had to tell him to keep quiet so she could get some sleep, already.

When Don and I returned to the Pacific Northwest in 2003, Leonard and Deborah presented me with a going-away present, a copy of Al Franken's Lies and the Lying Liars Who Tell Them. On the way to Seattle, I stopped at the Corning Museum of Glass in Corning, N.Y., and found a beautiful hand-blown menorah in the shape of a spreading cedar tree. I sent it back to the Zions, saying that it reminded me of Leonard's searching intellect and the woman whose love had nourished it.

Leonard and I continued to play chess via the Internet, and as always he continued to win most of the time. We'd play three games per session, but this past spring he started begging off of the third game. I started winning more often, and not because I was playing any better. Then, one Sunday in April, Leonard played two especially bad games. A week later, he missed our appointment.

He had suffered a second stroke, and by June he had passed away. I couldn't attend the funeral, but flew back to Boston a few weeks later and had lunch with Deborah, their daughter Alana and son-in-law Fernando. We ate at a restaurant that had been Leonard and Deborah's favorite. It was right down the street from the Boston Public Library.

Leonard had been in his 80s, and when he died I wondered about Deborah, thinking of those couples who go within months of each other. Please don't think me macabre. My own partner passed away on Sept. 22, 2004. I'm not squeamish about death, and my thoughts about Leonard and Deborah are of the very fondest sort. Theirs was the sort of love you could feel as you walked past their house.

This fall, within only a few months of Leonard's passing, Deborah fell into a coma. She came back out and learned that she was diagnosed with a brain tumor. Now she is in an apartment next to Alana and Fernando's, under round-the-clock care by a hospice agency. Her time is coming. At the risk of descending into cliché, my love for Deborah and Leonard surpasses my ability to capture it in words. Ah, but Deborah, you were able to vote. And isn't it wonderful what happened!

And that brings me to my new rabbi.

Within a few months of my partner Don's passing, one of my brothers and his wife were given the gift of a daughter. And so was I, because I have always regarded my niece Madeline as the new life formed in an answer to Don's passing. She doesn't know it -- not yet -- but Madeline is particularly special to me. She will always be the seedling that grew from Don's ashes.

This fall, I found someone who will fill the shoes left by Leonard and soon to be left by Deborah. Click here for music, turn it up nice and loud, and keep reading.

He is a young Marine Corps staff sergeant who was severely wounded in Iraq, and he has already taught me the sorts of lessons that, with all due respect to Leonard, aren't in books. Out of respect for his wishes, I'll call him Mike rather than use his real name. And even with a pseudonym, I'm not going to detail his injuries or how they occurred.

I'll say this much: Mike is what you call a hero, and I say it as someone who thinks that word has been vastly overused lately. You know, those unbearable yellow ribbons and the breathless commentary about how everyone in uniform is a "hero?" That kind of crap only debases the currency. You'll just have to trust me when I tell you that Mike is the real thing. You know those guys who crawled up Mt. Suribachi with knives in their teeth and planted the flag on top? They are still here.

It's an open question as to whether Mike's going to make it. He is in frequent pain, both physical and mental. Every week is an effort to stay alive. If I can do anything to keep him alive, I'll do it.

I met Mike during a debate on a so-called "milblog," a category of right-wing website purporting to support the troops but in fact exists to do little but serve as cheerleaders for Bush's disaster and to attack the patriotism of anyone who differs. I have posted on those sites partly out of neurosis and partly out of a genuine belief that the right wing in this country badly needs to hear a few things.

We were in full argument, insults flying. Mike spoke up and wrote that he was wounded in Iraq, something I had not known. My body is fucked up and my brain is scrambled, and if you people are going to sit there and hate each other then I might as well just end it all because what's the goddamn point anyway?

In the blink of an eye, I am Billy Pilgrim, the time traveler in Slaughterhouse Five. Sitting at a conference table, looking down at some papers I had put there. Zap! A painless electric shock from my feet to my neck. What have you just done? Back now, on the Internet, I slam on the brakes. I stop posting on that site, contact Mike through e-mail and make peace. We've been corresponding ever since. And I've pretty much lost interest in giving what-for to the wingnuts on the "milblogs."

Something else: Mike is gay. Since being shipped home, he was introduced to and is now partnered with another wounded Marine, a 23-year-old guy I'll call John who wakes up in the middle of the night screaming with phantom pains in his missing legs. I said I wouldn't detail Mike's wounds, but I'll tell you this much: He is considerably worse off than John.

Mike, the fact that you're still here means that something that neither of us can truly comprehend wants you here. So make the most of it, my friend. In the words of Bob Dylan, words that I have quoted to you so often that I wouldn't blame you for being sick of them by now:

Ev'rybody will help you
Some people are very kind
But if I can save you any time
Come on, give it to me
I'll keep it with mine

Some time ago, John got drunk and crashed his hand-control-equipped car into another vehicle. I sometimes joke that I'm an atheist on Mondays, Wednesdays and Fridays and an agnostic on Tuesdays, Thursdays and Saturdays. John's crash must have happened on a Sunday. He hit a Marine who had served in World War II. Who didn't report the accident but instead helped get John into Alcoholics Anonymous. Semper Fi.

This past week, Mike and John celebrated the 231st birthday of the United States Marine Corps, a service that would probably still expel them if their sexual orientation became known. They love each other, their country and the Marine Corps, and they hope for victory in Iraq. Mike says a lot of the conservatives on the "milblogs" treat him well, and that he has decided to dedicate his life to memorializing his buddies who made the ultimate sacrifice.

So, I have a new rabbi. I walk in his shadow, just as I have walked in Leonard and Deborah Zion's shadows. Life is a mysterious grand circle, a collection of paradoxes, a moebius strip. Time and space merge and we all move on, hoping that before it's all over we can count ourselves among the brotherhood of the civilized.

Addendum: Deborah Zion passed peacefully on the night of November 20, 2006. She joins her husband Leonard, who passed on June 16, 2006. I will treasure and remember Deborah and Leonard's love and friendship for the rest of my days. I'll do it with every breath. They changed me, and therefore they are still here. A song for Leonard and Deborah Zion