Thursday, April 2, 2015

RANT: Can you put away your pink ribbons just this once so we can get some MS awareness here, please?

This is not really safe to post anywhere else. Gonna be honest here, and I do expect some backlash, so please, go ahead, commence with the hate mail, but it needs to be said:

If I, as an MSer with a progressive, chronic disease, get another pitch to donate to breast cancer research from my friends, I might have to turn from a healthy pink to an ugly orange.

I'm generally a compassionate person, but the constant onslaught of friend requests for my money for breast cancer is becoming rather annoying and insensitive, considering they know I have MS. Only one of them (that I'm aware of) has given any time or money to MS research, in the meantime. Bless her heart, she has at least two good friends with MS and has been showing support for them from Day One. She gets it.

Not everyone else does. The pink campaign is so effective it largely wipes out other campaign attempts in its path. Good for them, but screw the rest of us.

What's worse... the breast cancer campaign has started adopting the phrase "orange is the new pink" to encourage cancer patients to eat more orange fruits and vegetables. I'm all for that, but orange is the MS campaign awareness color. Please, you already get the lion's share of research funding... do you really need to steal our campaign awareness color, too?

So the MS campaign introduced the prism ribbon instead, because MS is considered a multi-faceted "snowflake" disease, with no two cases alike. No wonder we still don't know what causes it, no wonder we still don't have a cure. It's a lot harder to study.

And yet, who is wearing the prism ribbon? Hmm?

(Oh, and PS: orange is the awareness color for Leukemia as well. Another kind of cancer.)

I have friends who have survived breast cancer thanks to tons of research, chemo and surgery, none of which have been able to cure MS. I do not dislike these people or judge them for surviving; I'm glad they are here among us, as they are wonderful people. I say they are because they are alive. That sounds suspiciously, to me, like a cure.

What I'm not so glad about is that breast cancer awareness seems to have monopolized the medical charity efforts in the US in ways that are simply unfair to so many others whose disorders won't "kill them," but still face, rather than an immediate death, the slow and painful and often humiliating degeneration of whole body systems (nervous system, immune system, endocrine system, lymph system, muscular system, digestive system, sensorimotor system).

Our brains are shrinking and there ain't shit to be done about it except for spending $60 thousand or more annually on a single medication that may or may not do anything while heaping on the PT bills, the MRI invoices, and the costs of ongoing visits to multiple docs for symptoms, blood work and treatments from specialists who may be tracking your progression as part of research. Let's not even go into the side effects of our lifelong chemotherapy, which is basically what MS treatment is.

(Some MSers do, in fact, get their treatments in infusion centers right along with cancer patients. Others take daily painful injections and some lucky souls get to take their meds orally now, thank goodness, albeit on a full stomach to fend off major gastrointestinal issues. This is not baby aspirin, peeps. MS meds offer many of the fun side effects that cancer drugs offer as well, like alarmingly discolored or unpleasantly foul urine or an extreme, full-body burning, itching sensation that made one friend of mine in Chicago strip off all his clothes and go outside and roll in the snow.)

Let's face it, MSers are guinea pigs. Not because scientists hate us or conspire to keep us sick, but because they don't have enough money to do the research necessary to stop our disease in its tracks, though the efforts and the passion are there to do it.

I did not post dailies this year for MS Awareness Month this March because I couldn't afford the time away from work that it would require of me. So allow me to do some of that edu-ma-cation here, sharing some examples of ordinary people with MS and how it doesn't kill them, but neither does it make them stronger:

* A woman in her 30s with a colostomy bag due to perpetual incontinence, three school-aged kids to raise in a single working parent scenario, who's just discovered that she now has failing balance and vertigo issues which compromise her ability to keep working as a mail carrier or safely care for her children.

* A man in his 20s with a high school education who worked in construction but who now has no ability to walk, who can't get SSDI because his cognition is still good enough, but who can't work anymore at what he knows best. And even if he did get a job, it would be at minimum wage and he would still live below the poverty line even after pharmaceutical companies gave him his meds for free.

* A lifelong advertising executive who has suddenly lost her ability to speak and write, the two very skills she requires in order to work. Maybe she will receive some economic benefits from early retirement due to disability in the private sector, but she will lose the one thing that gave meaning to her life: her career. Now what will she do? She can't go back.

None of these people can go back to normal. MS is not temporary. You don't just take a year or two off to fight it, then win, then come back.

Keep in mind that MS is not a disease that comes from old age or poor lifestyle habits. It strikes people mostly between the ages of 10 and 50; these are hardly feeble individuals who've already lived a long and happy life. Researchers have not yet found any proof that suggests a poor diet, risky behaviors, or a lifetime of smoking or drinking are behind the cause (which is, actually, found to be a cause behind many cancers). Right now, they find environmental factors (like living in the north), viral theories and potential genetic propensity among the most likely candidates for causation.

We "survive" MS (as do many others with different chronic, disabling diseases like Type I diabetes, clinical depression, ALS, cystic fibrosis, narcolepsy etc.),  by "living with" illness, which can mean a lot of disability, pain, depression, failed treatments and social ostracism. We "survive" because we have no other option.

Imagine telling a cancer patient to just "power through it," "buck up" or "learn to live with it."

That's what MSers hear everyday. That, and... "At least it's not cancer."

See original infographic to read more
about appropriate conversational
etiquette for those who don't have MS
Yes, I know that with cancer, once you have treated it, you have to go back in and get checked once it has been conquered... that the threat is always there. I have a friend who beats it only to find her bone marrow invader has come back. I had another friend who beat one kind of cancer only to discover he had a different kind altogether just a few months or a year later, not metastasized from the originating cancer, but a new kind of monster.

Yes, I know you can die from cancer. But MSers, who don't die from MS, die from dumb things all day long because of MS. A little infection in their nailbed that becomes sepsis because of ongoing lymphopenia. Sudden heart failure in the normal healthy heart of a 20-year-old because the connection between the central nervous system and their heart stops working. A fatal burn while trying to cook Sunday dinner for the family. Gangrene from a toe injury an MSer may not even be aware they have until it's too late.

Please consider this: My mom was a lung cancer survivor for 20 plus years. She died of pneumonia, no cancer to be found in her body. Were I to ask her today how much she lived in fear of the cancer returning, she would have said, "One day a year, for my checkup." I asked her often whether she was afraid it would come back and she told me, "not anymore."

There is a luxury to that which can never be enjoyed by someone with MS.

Meanwhile, she lived with excruciating degenerative joint disease and COPD, neither of which can be treated like cancer. She and I had much to commiserate. These are also conditions you must "power through" or "learn to live with." MS isn't the only miserable state of pain and dis-ease one can be in, so I can imagine that my railing against the "need" for endless breast cancer funding at the expense of overwhelming need elsewhere doesn't just resonate with MSers, but with all kinds of others who can't get the relief they need.

Interestingly, those with MS who then also get cancer? Probably not going to survive. The immune system is already ravaged; cancer may be opportunistic, but so is autoimmune disease. If the system is already running on fumes, a few cancer cells will make quick work of an MSer; quick progression of cancer in an MSer can mean they won't even have the luxury of something like a double mastectomy. Seriously. A double mastectomy sucks, to be sure, I know more than one person who has gone through this and come out okay. It tooks some therapy and reconstruction, but they managed and moved on. But it's less likely that will be an option for an MSer.

You know what also sucks? Cutting off one's feet due to diabetic neuropathy and having to walk around in prosthetics or being forced into a wheelchair because of it. And what about the 20-something person who has lost the ability to swallow? They will be spending their day on a feeding tube, rather than living a joyous active life as a young adult, while someone who has had a double mastectomy is out running a marathon for a cure. Or the person who suddenly wakes up and can't see, who did not get a proper diagnosis in time despite the distinct connection between optic neuritis and MS, because doctors aren't knowledgeable enough about MS to point her in the right direction, has to quit the lifetime career she loves because of it, while a person who had had a double mastectomy will be getting dressed for another day at a job she could take or leave.

But we have made the cancer survivor a hero, all the same. This isn't at all that fair to those who don't survive cancer, by the way, because somehow that implies they didn't try hard enough, they were failures as warriors. My heart goes out to them, including relatives and loved ones. My friend JL fought several years and several battles with cancer before succumbing. He didn't die in vain, having traded his privacy, even his own genome map, to the world to help fight cancer. To me, that is heroism, not racking up big bucks in some ribbon campaign and women walking around in pink tennis shoes.

But who can be the heroes of MS? MSers with serious, aggressive symptoms and progression are forced into hiding; they are incontinent, blind, lame, they can't carry a conversation because of cognitive dysfunction and speech problems, their muscular spasms and inability to manage sensory overload make it impossible to appear heroic in a world which quickly places the pink diamond crown on a breast cancer survivor who has just completed a triathlon.

If only an MSer could do this. Let's be clear: while a minuscule handful can do this, the vast majority cannot. It is not because they aren't trying hard enough, or that they aren't strong enough warriors, it's because they cannot.

You would not ask someone with a broken leg to run laps. That would not be fair.

You are not a hero when you have MS. You are treated like a criminal sometimes, however, or a system abuser, or lazy, or a freak, or placed into some other box despite all the other ways you contribute to the world as worker, parent, spouse, activist. You try to hide your disease when you can just so you can be treated like a regular person; many MSers lose friends and jobs and lovers once they come clean. It's all wrong, I know, but it's not an exaggeration to call out the reality that it happens more often than good taste allows.

I need to point out here that I have amazing loved ones who don't do this, but those who suffer from multiple sclerosis experience daily how clueless many others are about MS, including ageist abuse from older folks mocking younger people with assistive devices or handicapped passes, job discrimination based on ignorance about how MS does or doesn't affect our abilities, and the absolute nightmare that the SS/disability application can be, not to mention the dismissiveness of some medical professionals and the commonplace issues MS brings with sleep disorders, anxiety and depression.

With cancer, there's always the possibility of ridding yourself of it, of never having to live with its unpleasant, disabling and sometimes embarrassing symptoms for decades with no cure. It is temporary, for most. A few years out, at the worst.

Yes, people die from cancer. But at least cancer has the decency to be done, it does not cause suffering for *decades* like MS does, especially for those who are struck with a DX in their 20s and face a solid 60 years with the likelihood they will never get better but worse.

There are people with MS who live daily with something called suicidal pain. Let's talk about how death arrives for the MSers. When you are suddenly diagnosed with MS, something does die. Your life as you knew it is gone. You do not get to go back to it. Ever. Even breast cancer survivors I know have said they are back to normal. For MS, that is never possible. Not without a cure.

This isn't a cancer patient's reality. I have friends and family who have had breast, lung, bone, blood, prostate, colon, liver, esophageal and oral cancer, and doing some quick math yields that 95 percent of them survived and are cancer free today, or if they did die, they died cancer free.

Ask medical professionals, they will also point to the great war against cancer and how it has really turned things around when compared to just 20 years ago. In fact, there are more cancer survivors today than there are MSers. Period.

These are not the odds we enjoy with MS. We get the experience of helplessly watching our own progression with no means to stop any of it aside from 5-figure medications and lifestyle changes, which only work for some. We have zero surgical options. Only those with RRMS even have a slight chance to delay progression with meds; try to imagine life for someone with PPMS or SPMS, the aggressively progressive forms of MS which have zero pharmaceutical options. All these MSers get is advice to "power through it" or "learn to live with it" even as one system after another fails them. People with RRMS can gradually progress to these forms as well, so it's not all hearts and flowers for them either.

Despite the large awareness campaigns generated via the National Multiple Sclerosis Society, MSers definitely still have to deal a lot more with public ignorance about the disease. This has to change.

I mean, when you lay on the couch all day with the unending fatigue and muscle weakness of MS, you are perceived as lazy or a system abuser or wantonly depressed, but if you have breast cancer, where are your servants? You are a queen or a king. People come out in droves to cheer outside your window. For MSers, we get crickets.

What we don't get is adequate research money from federal funding agencies like the NIH. Breast cancer research in 2013 was given $657 million in funds for research by the NIH (this doesn't count the $267 million granted by the Susan G. Komen foundation, whereas multiple sclerosis was given $112 million in research money from the NIH, plus $48 million from combined efforts by the NMSS.

Not making this up.

There is a significant difference between $924 million and $160 million, is there not? Like, a more than fivefold difference?

Maybe it makes me morally bankrupt that I should be annoyed by the breast cancer campaigners among my friends, who really must have forgotten all about me and my MS or who don't care that I already have an incurable disease.

But until they give at least as much of their money to MS as they do to breast cancer research, and spend some time at an MS walk or wear orange (or prisms! or snowflakes!) instead of pink all the time, I can't really be motivated to help their cause because, the way I see it, they've got all the help they need, and me and my peeps? Not even close. The numbers don't lie.