Introduction-Why write this book

When I was diagnosed with primary progressive Multiple Sclerosis, I wasn’t surprised. The internet had been around long enough for me to investigate my symptoms. Dr. Google agreed with Dr. Rodriquez at Mayo Clinic; I had MS. It would worsen over time, and I would likely be fully disabled. My prognosis ranged from mildly disabled when I was old or I could become wholly invalid within a year. Those were the possibilities. I suspected my outcome would land somewhere between.

I was 42 with hopes and dreams for family, career, community, and myself. I wasn’t ready to be stamped “disabled” and shoved into a wheelchair.

Mayo Clinic gave me a brochure and pointed me to their website. My doctors answered my questions and explained my disease to the best of their knowledge. Unfortunately, their knowledge was pretty thin.

Dr. Google wasn’t much help either. Much of the information on the internet was fascinating, scary, and downright silly. I plowed through articles, papers, clinical trial reports, and statistics, all of which pointed to the same conclusions:

Cause-Unknown

Prognosis-Unknown

Treatment- Unknown

No cure for me, no silver bullets; I would have to learn to live with this disease. It was part of my life, now, and for the rest of my life. Mayo provided information; I found support groups and organizations like the MS Society with resources to help me live with MS. Much information was very relevant; most of it was not for my particular form of the disease, age, and lifestyle. I had to stumble and bounce around to put the pieces of my puzzle together. I learned that my puzzle changed with age, medical progress, and societal advancements.

Then I got a new diagnosis. This one was much scarier and could kill me. On my wife’s birthday, August 9, 2018, I was diagnosed with chronic lymphocytic leukemia. A much more dangerous disease but much better understood. Tests and treatments were available. People repeatedly told me that I would die with leukemia, not from it. My brand of CLL was serious and would require treatment within five years of diagnosis. CLL’s cause was unknown, but its prognosis and treatment are well understood. Incurable, no silver bullets; I would have to learn to live with this disease. It was part of my life, now, and for the rest of my life. Once again, Mayo clinic provided information; I found support groups and organizations like the CLL Society with resources to help me live with CLL. Much information was very relevant; most of it was not for my particular form of the disease, age, and lifestyle. I had to stumble and bounce around to put the pieces of my puzzle together. I learned that my puzzle changed with age, medical progress, and societal advancements.

Just like MS.

I put my career was on pause for about ten years as I made sacrifices for my health, but hopeful that the diseases wouldn’t progress and I could reboot as I learned how to manage my body. Eventually, with the help of Covid scares, I realized this wasn’t going to happen, and the time had come to push the stop button. My career was over.

On August 1, 2020, I left work and started my journey along the path of disability. My former employer provided a one-page guideline, and my long-term disability insurance provider offered a 4-fold, glossy brochure and a website. There wasn’t a concise organization like the MS Society or CLL Society. No support groups and no one to call if I had questions. I had a new puzzle to put together, and this time I would have to do it without much help. For the next two years, I discovered how to find all the puzzle pieces and the tools and methods to fit them together.

I discovered how to be great at being disabled.

I write this book to help people with their disability journey. I write it to inform and teach. My sincere desire is to help make life a little easier, a little better, and meaningful. I also hope to inspire others to share their puzzles and how they put the pieces together.

1. View from 50,000 feet

What is disabled?

What does it mean to be disabled? Everyone has some level of disability. Most people can’t free climb a cliff or replace a car transmission, and no one can fly without the assistance of a machine. So, are these disabilities? In short, yes, they are. A disability is a limitation that prevents or reduces desired outcomes. Many are disabled from rock climbing by too little strength, disabled from auto mechanics by too little skill, and disabled from flying by gravity.

We are all disabled. Our disabilities are unique and change as we progress through life. Some disabilities are temporary, others are conquerable, and others are permanent.

Our culture and legal systems have specific rules and definitions for disabilities provided to help guide people to benefits and protections. The rules carve out special considerations, limiting some people so others retain fundamental freedoms. For example, a handicap parking tag provides a special benefit to those with mobility difficulties. A protected right to reasonable access is facilitated through markings and tags, policing and fines, peer pressure, and violator shaming. Special rights (granted to a select few) based on their physical attributes—a very slippery slope to navigate.

Disability, according to the law, differs from disability according to cultural and business best practices. Best practices see the legal definitions as the minimal standard. Organizations enhance these standards with added benefits. Some added benefits are substantial, requiring proof of compliance with the organization’s practices. Knowledge of the minimal standard and enhancements will help you know what steps to take, who to talk to and when you are dealing with a right versus a privilege.

Being great at being disabled requires understanding the difference between legal requirements and best practices.

Money

Like it or not, money is a big part of everyone’s life. We work for it, spend it, save it, covet it, and plan for it. Lacking money can result in poor health, but plenty of money does not guarantee you will be well. Excessive money can result in complacency, but insufficient funds do not cure laziness.

Disabilities present additional money challenges with higher living costs and fewer earning opportunities. Statutory help and best practices provide people with financial assistance to meet basic needs and enjoy life. Federal, state, and local legislators create programs offering funds that, both directly and indirectly, help individuals.

The organizations that passed laws or established benevolence funds count on individuals to step forward, communicate their needs and accept what they offer. When asked, these organizations fall over themselves to help. Assistance requests hit at the heart of why these organizations exist. Amazingly, many people prefer to keep quiet, choosing to suffer in silence rather than accept the offered blessings.

Being great at being disabled demands setting aside pride and accepting help and entitled benefits.

Social security

Originally intended to replace some income after retirement, Social Security has grown to include death and disability benefits and health insurance via Medicare. Funded by a payroll tax known as Federal Insurance Contributions Act (FICA), everyone who works contributes to this program. The money you and your employer paid into FICA entitles you to the program’s benefits. The term “entitlements” is usually referring to these benefits. People understand that they paid for these benefits and become very upset when politicians attempt to use them for other purposes. Therefore, Social Security entitlements are considered the third rail of politics.

Whatever your political view, the reality is the benefits exist. Via elected representatives, our society has determined that we need to provide certain classes of people with some extra financial help. Twenty-one years after Social Security went into effect, congress added disability insurance to the program, allowing people who could no longer work to collect their full retirement income regardless of their age. A person’s benefit is determined by how much they contributed when employed.

The disability application process is a daunting and slow activity. Rejection is common, and appeals are usually needed to get your benefits. There are compassionate allowance programs that accelerate the process for some cases. When you worked, some of what you worked for was this benefit. Once you are no longer employed, you will still have some work to complete to collect.

Being great at being disabled necessitates that you learn how your government benefits work, how to apply for them and how to appeal decisions.

Insurance LTD

On the first day of your job, you had a stack of paperwork to fill out. Forms telling Human Resources about emergency contacts, health insurance, and retirement funding. You had to sign policy documents, maybe a non-disclosure agreement or a non-compete agreement. Forms, forms, forms! One of those forms was likely related to Long Term Disability insurance or LTD.

Many employers offer private LTD insurance. You may also have chosen to buy LTD insurance on your own. It is relatively low-cost, and employees like it when they see it—often provided at no cost as part of a benefits package. Most people don’t need or think about this insurance and maybe even forget they have it…until it’s needed.

Making a claim and receiving LTD benefits is a complex process that varies from employer to employer and from insurance company to insurance company. Typically, you will be required to exhaust any Paid Time Off, complete a period of Short Term Disability, submit medical records, and periodically re-justify your disability application. For this work, you will receive compensation, usually 2/3 of what you made when you last worked. If you bought your LTD insurance, the payment is not taxed but is taxed if you received LTD insurance as a no-cost benefit. You will likely need to set up estimated tax payments for federal, state, or both. You will see the FICA tax get suspended after some time.

Insurance companies selling LTD insurance do so as part of their business. They are trying to make a buck, just like any other business. Consequently, they will make sure that they only pay out what they are required to pay according to the agreements made. They have a fiduciary responsibility to make sure all claims are valid. Don’t take it personally when they ask for proof of your disability, be happy they are being conscientious with their customers and investors. Cooperate with their requests to apply for other benefits, like social security or state disability. Remember, however, that your former employer is their customer, or if you bought LTD insurance, you are their customer. Hold them accountable.

Being great at being disabled means you understand the benefits you received from your workplace or purchased independently.

Insurance-Health

LTD is a tremendous benefit. It can allow you to maintain your lifestyle to the same level as what you enjoyed when you were working. It doesn’t replace all of the benefits, however. Part of your disability journey is replacing health insurance that you received from your former employer, which is a big deal, especially for those of us who are already dealing with health problems. You may need to take advantage of Consolidated Omnibus Budget Reconciliation Act (COBRA) or Affordable Care Act (ACA or Obama Care). The health insurance programs can help bridge your coverage until you are eligible for Medicare.

Health insurance is expensive and probably one of your most significant budget items. COBRA extends the benefits you had when working; in theory, ACA helps you purchase insurance on the open market. Both require you to pick and choose what coverage you want, which affects how much you will pay. COBRA is limited to the plans offered by your employer, including medical, dental, and vision. ACA requires you to shop for an insurance company and plan. COBRA has no income limitations. ACA is income limited and designed to help lower-income people, so, by definition, most people will not benefit from it.

You may be able to join someone else’s benefit plan, your spouse, for example. Joining your spouse’s plan is often the best alternative, but not always. You probably evaluated your spouse’s insurance at some time in the past and chose not to use it. Those reasons are still relevant. Your spouse may also need to leave the workforce to help with your care.

Once you leave your employer, health insurance planning becomes more than just signing up for the benefits offered. You must make a clear-eyed assessment of what you need and then shop for the best deal. There are many companies and lots of choices to be decided. Do the math on your health care. Choose wisely, be honest with yourself and your spouse—purchase based on what you need, not what you want

Being great at being disabled insists that you understand and trust the mathematics of insurance choices.

Other benefits and how to get them

Receiving a disability designation from the Social Security Administration amounts to an official government acknowledgment of your disability. This recognition unlocks other benefits besides social security. Many state and local government programs acknowledge a Social Security ruling as proof of disability. Nonprofits likewise accept Social Security disability rulings as a determining factor.

These ‘other’ benefits cover an extensive range of needs. You may be able to find help for mobility problems that can include obtaining wheelchairs, scooters, or even rides. You can get special parking permits. In some states, you can get free or reduced costs on fishing, hunting, or camping fees. Your state may reduce or eliminate your property tax.

Many companies want to know about your ailments and are willing to pay for this information. They may ask you to try their product or complete surveys and will pay cash for this work. They will usually let you keep the samples you evaluate.

The medical world offers clinical trials for new treatments. Some are for new drugs, while other trials can be for new devices or even new training programs. Participation in clinical trials helps your community and often has significant benefits for you.

If you are a veteran, you will have many other benefits. The topic of veterans’ benefits is complex and beyond the scope of this book. I have no expertise on this topic and could not do it justice. If you are a veteran, perhaps you can share your journey through these benefits.

Being great at being disabled leads you to learn about and accept available assistance.

Charities, foundations, and other nonprofit organizations

Having an ethic to help each other is a crucial element of civilization. Every culture, religion, and community has such an ethic. Our society has established particular organizations with special designations to accomplish benevolence. We have given these charitable organizations special tax status, facilitating their mission. Not every nonprofit is a charity, but every charity is a nonprofit with funding from public or private donations.

Many charitable nonprofits are well known, with a strong media presence. There are other less well know groups who are doing great work. These groups tend to target specific conditions and have a more focused agenda. Big or small, both types of organizations offer help with education, finances, tools, and representation.

Recipients of these benefits do so voluntarily, meaning you must request help. No benefits unless you ask and no penalty if you don’t. Knowing what benefits are available and how to apply for them can be daunting. Many nonprofit organizations headline their work on fighting for a cure while quietly excelling at the minutia of daily life.

Being great at being disabled is accomplished by engaging people who want to help.

Mental health

Why me? The question most health-challenged people ask at one time or another. Did I do something wrong? How did I get picked to have these problems? Questions without answers, or more accurately, incomplete answers. You didn’t do something wrong, but maybe that time you accidentally spilled weed killer all over yourself…

These questions lead you to a path of destruction. They are unanswerable and invade your mind, changing your behavior and causing you to give up. Questions comparing your situation to others are inherently dangerous. ‘Why me’ questions have a natural counterpart; why not them? Self-pity, jealousy, and anger are the only emotional outcomes.

These questions sneak into your mind. Defenses like doing puzzles, reading fiction, or playing games help keep your mind occupied and away from troublesome thoughts. Growing your spiritual life can entirely defeat these questions and even lead to answers. Purposefully protecting your mind is as critical as protecting your body, maybe even more so.

Being great at being disabled involves mounting a vigorous defense of your mind.

Physical health

Maybe you used to enjoy participating in sports. Perhaps you liked basketball, volleyball or just going for a run. Then you had your accident, or your disease caught you, and your sports career was over. You would still love to hit the slopes or hit the links, but your new body has made it abundantly clear that these things are no longer possible. Still, you try. You convince yourself that you can beat your ailment and still be the same person you always were.

Then you get hurt. Maybe more than once. Your loved ones have ‘the talk’ with you. You must not ski if you can barely walk. Running isn’t making you healthy; it’s making you have a hard time breathing. You are lucky you only cut your leg when you fell off that bike.

You realize they are right. The things you used to enjoy now hurt or sap what little energy you have. It is time to stop.

Stopping physical activities is a slippery slope to giving up. Someone who gives up is placing their life at risk. You will become more helpless and feel worse if you cease all physical activity. But you can’t continue doing the things you used to because those things also make you feel bad.

When the time has come to end an activity, the time has also come to start a new one, appropriate to your body as it is.

Physical health is more than just staying active. It is also about staying current with your doctor visits. Getting the tests and check-ups that we all need as we age is essential for people who already have an ailment. It is tempting to argue that your disability exempts you from other concerns or that you don’t care if some new disease sneaks up on you and kills you. Unfortunately, most medical problems will torture you before taking you. It is far better to keep vigilant and keep fighting.

Being great at being disabled is the same thing as being great at being healthy.

Giving back

It is difficult for many of us to accept help. We don’t want to be a burden or depend on others. Our desire for independence is a remnant of our toddler years. We mentally stomp our foot, cross our arms and shout, “I can do it all by myself!” Eventually, we understand we need help until we learn and grow. Help from someone who has already mastered the skill we seek.

Once we can do “it by myself,” we love to show others our new skills, and we love to help. Altruism is instinctive to our species. It is a basic need, critical to our survival. Giving back is satisfying and rewarding to the giver, receiver, and society.

A disability robs you of skills, maybe many that you have polished your whole life and made a principle part of your persona, forcing you to return to toddler years. Once again, you may stomp your foot and insist on doing things “by myself!” Once again, you accept help as you learn, grow, and eventually master new skills. Finally, you get to receive the satisfaction of sharing what you have mastered.

Being great at being disabled can make you thankful, helpful, and caring if you let it. You have beaten your disability. You have won. Now it is time to share your victory.