Last year I posted my first two rounds of the “Which Would You Rather Have” discussions. I compared progressive disability to sudden disability and to cancer.

Progressive disability is what I have. My particular version is called Primary Progressive Multiple Sclerosis (PPMS). I was diagnosed 9 years ago with the slightest limp. Now I spend all day in a wheelchair. I know some advanced MS patients who long for the days when they could sit in a wheelchair for hours on end.

There are ignorant people. We can argue about how much is due to nature, and how much to nurture, but it doesn’t really matter in the end. Ignorant people can’t comprehend how the world works, and have trouble grasping complex notions. They adopt overly simplistic or purely erroneous models, and they don’t seem to mind. But many ignorant people overcome their impairment by being decent. They may not appreciate the difference between circumference and radius, but they know good from bad, and strive to improve the lives of those around them. I am often frustrated by these people, but that speaks more to a deficiency (of patience and understanding) in me rather than in them. All things considered, I think I’d rather be a decent, ignorant person than have a progressive disability.

And there are assholes. These people simply don’t treat others with respect. They can be demeaning, dismissive, and rude. But not all assholes are necessarily bad people. Many are driven individuals who contribute to the greater good. Most CEO’s, countless brilliant scientists, and more than a few physicians I know are productive assholes. So I guess I’d rather be a productive asshole than have a progressive disability.

Then there are the ignorant assholes. They are the worst. The combination is synergistic. Ignorant assholes are wrong about things, and are obnoxious about being wrong. They do not contribute to society. In fact, the rest of us spend much of our time and resources undoing the damage inflicted by ignorant assholes. So, if I was magically starting over, and was given the choice of living a life that would include progressive disability or living a life as an ignorant, healthy asshole, then for the benefit of both society and my personal well-being, I’d say, “I’ll take the MS please.”

I must have some specific ignorant assholes in mind, right?  There are so many to choose from, but it’s hard to find a more appropriate example of IASS than the pastor and congregation of the Westboro Baptist Church of Topeka, Kansas, pictured above.  I challenge you to top that one, without choosing a politician (that’s just too easy). 

“If you’re going through hell, keep going.” ~Winston Churchill

Last week I posed the question- which would you rather have, progressive disability or sudden disability? That post spurred a lot of interest, so here is round two.

First, some introductions:

Progressive disability is what I have. My particular version is called Primary Progressive Multiple Sclerosis (PPMS). I was diagnosed 8 years ago with the slightest limp. Now I spend all day in a wheelchair. I know some advanced MS patients who long for the days when they could sit in a wheelchair for hours on end.

Cancer is an even more nebulous affliction than last week’s sudden disability was. The term “cancer” covers the spectrum from types that rarely kill, such as skin cancer, to types that often kill, such as lung cancer.

What are some of the similarities?

1. With both progressive disability and cancer there is a DAY, a singular moment in time, that is your day of diagnosis. For some patients, with either PPMS or cancer, there are hints or suspicions before diagnosis day. For other patients, it comes as a complete surprise (I was in the former group). Diagnosis renders your life a dichotomy- there is the life you lived before your diagnosis and the life you live after. It’s as if two different beings occupy your body, one at a time, handing off the baton on diagnosis day like track athletes in a relay race.
2. In each case, progressive disability and cancer, soon after diagnosis you are faced with treatment choices, none of which are very appealing or guarantee a positive outcome. In the case of PPMS the choices are either to treat the symptoms only, to try some unproven treatment to slow down the progression, or to do nothing. In the case of cancer the options are usually surgery, chemotherapy, radiation therapy, a combination of all three, or nothing at all.
3. With both progressive disability and cancer you disclose your new reality to family, friends, and often coworkers. Disclosure to those you hold most dear is a gut wrenching experience, where you do your best to put a positive spin on the situation to minimize the drama. They usually see right through you though.

What are some of the differences?

1. PPMS rarely kills- directly and suddenly anyway. In most cases it has the effect of shortening your lifespan by a number of years, but, with some exceptions, it is not in the strictest sense a killing disease. Cancer, on the other hand, always carries with it the cloud of potential death. Depending on the type of cancer, the prognosis ranges anywhere from “most people have a complete recovery from this” to “you need to get your affairs in order.” In summary, with progressive disability death is rarely part of the initial discussion. With cancer, death is usually part of the initial discussion.
2. Cancer is often cured. Cancer can be transient- visiting upon you for some part of your life, and if you survive, leaving you at some later point. People sometimes speak of their cancer in the past tense. PPMS is never cured. Once PPMS visits you, it doesn’t leave. People with PPMS are unable to refer to it in the past tense.
3. Similarly, people with PPMS don’t have the emotional highs and lows associated with cancer. We know we have it. Acceptance comes early. We never deal with the disappointment of hoping that just maybe we beat it, only to learn months or years later that in fact we didn’t. Cancer patients ride more of an emotional roller coaster than progressive disability patients do, at least in this regard.
4. Cancer is common. Everyone knows someone who has had cancer. Most of us have lost loved ones to cancer. Many among us harbor a palpable fear of developing cancer. On the other hand, many people don’t personally know anyone with a progressive disability like PPMS. I didn’t. It’s one of those conditions that few people waste any time dreading.

It is worth noting that unlike the sudden disability versus progressive disability discussion last week, cancer and PPMS are by no means mutually exclusive. One of the fears those of us with a relatively rare disorder like PPMS have is that, on top of our current struggles, we are as likely as anyone to contract some sort of cancer. Doesn’t that sound like a delightful combination?

So, which would you rather have- progressive disability or cancer? My response is a bit of a copout.  I would answer the question with another question.  What kind of cancer are we talking about?

I would choose cancer over PPMS if it was a type that has, oh, a 60% chance or better of survival. I would, however, choose PPMS over cancers with a 40% or higher mortality rate. But that’s just me. And, frankly, that’s just me today. Ask me tomorrow or next year, and I’m likely to give you a different number.

So, which would you rather have- progressive disability or cancer?

Disclaimer: Of course there is no competition here, and certainly no right answer. I’m writing these types of posts to raise awareness of the issues people like me face, based on my personal experiences, and the issues people with other conditions face, based on my limited understanding of their situations. Comments are encouraged. Disappointment, outrage and disgust are discouraged, but understandable.