Our Era of Intolerance


I follow some of the social networking groups for people with MS, and a lot of what I read is sad, but not in the way you might think. Yes, it’s hard to read the about the plight of others who deal with physical pain, but it’s reading about those with emotional pain and scars that is especially rough.

I’m referring to the torment men and women feel about not being the kind of spouse or parent they think they should be. Then there are the single people who are alone and lonely, lamenting the bleak prospect that their disability might make them a social pariah for eternity. I’m also talking about people who lose the ability to sustain a job because their physical limitations prevent it, or their employers put so much pressure on them regarding unscheduled absences and lack of dependability that it isn’t worth the relentless emotional strain.

What I find incredibly sad, however, is reading posts from people whose friends and family question their integrity by suggesting or implying that they aren’t really sick, and that their symptoms are psychological.

Is this kind of callousness the exception or the rule? I’d like to think it is the former, but am afraid it is becoming or has become the latter.

For some of us, our disability is obvious. All you have to do is see the way we walk, or how we navigate our walkers or wheelchairs to recognize we are dealing with something that prevents us from being whole. Your senses provide proof that something is wrong, which makes our condition understandable and acceptable.

But for many, the symptoms are less obvious. You can’t see pain. You can’t see crushing fatigue. You can’t see cognitive fog. You can’t see depression or the general malaise that can emerge from constantly fighting a losing battle. These are not tangible things, so it’s easy and convenient for able-bodied people to be derisive and dismissive.

While I think it’s bullshit, I understand how people who are unrelated and unconnected to us can make those kinds of judgements. After all, we live in an intolerant age, at least in this country, where the current resident of 1600 Pennsylvania Avenue practices and promotes this kind of thinking. What I can never understand or accept is how family and supposed friends can be so unsupportive and cruel.

Perhaps these attitudes have always existed, and I was blind to them until MS opened my eyes to the plight of others. After all, people who have been living with mental illness or who are not neuro-typical have been dealing with this kind of prejudice for ages.

Still, why is it so hard for people to accept what their eyes can’t see? What makes individuals so dismissive about anyone who is less than whole, who may be odd or quirky, or who simply beats to their own drum? Why is someone who struggles with a physical or mental/emotional illness considered flawed, damaged, and therefore less of a person. Don’t we all deserve a little respect?

Is it insecurity? Do individuals feel uncomfortable or threatened by what they don’t understand? Or do people have the need to prop themselves up by tearing others down?

It’s sad to think that people are more supportive if you are stricken with something like cancer than dealing with a condition that isn’t as obvious, as easily understood, or curable. I hope I’m wrong about this, and am allowing the grim scenarios some of these posts describe to color my judgement about the world we live in. That would be ironic, because I don’t watch news programming of any kind for that very reason. The news is so negative, and paints such a bleak picture of society today, how could anyone who constantly exposes themselves to that message not be pessimistic about the future?

Maybe I should take a respite from these sites.

I was a child during the turbulent 1960’s, so I didn’t understand or feel the civil unrest that existed during that decade. After watching a recent documentary on the year of 1968, I concluded that I would have thought society was coming apart at the seams had I been an adult back then. I also would have feared for my child’s future.

I don’t think we have bottomed out to that degree yet, but it does feel like we are experiencing a renaissance of the 1960’s and heading in that direction. Our current level of social discord permeates everything, and perhaps feeds the point of views that allow people to conclude that our symptoms are all in our head, and all we have to do is stop feeling sorry for ourselves, suck it up, and get with the program. Kindness and empathy still exist, perhaps more than we think, but it is drowned out by all the other noise, and seems harder to find.

Whatever it is that is driving this mean-spiritedness, I hope it dissolves in the not so distant furture, and we all emerge relatively unscathed.








The Guilt of Living with a Chronic Disease


The most unexpected emotion I’ve encountered living with MS is feeling guilty about it. It’s infuriating because I obviously didn’t sign up for this. And I know the cliches: it isn’t your fault, you can’t blame yourself for this, shit happens, blah blah, blah blah blah. I get it, but that still doesn’t negate the fact that guilt is one symptom of MS I never expected, and it pisses me off.

I don’t want to give the impression I’m consumed by this, because I’m not. I also understand this sentiment is irrational. After all, I still work and “provide” in that sense.  I’m not an invalid by any stretch of the imagination, and I contribute to running and maintaining the house any way I can. An argument can actually be made that I too often push myself more than I should. So from an intellectual perspective, I understand that there is absolutely nothing to feel guilty about.

Unfortunately, the emotional reality keeps getting in the way, and often strikes like a lightning bolt.  First of all, I’m obviously not the guy I was ten years ago, and no matter how you rationalize, I can’t escape the truth that I can’t do a lot of the things with my loved ones I once took for granted. Simple things, like going for walks and riding a bike, are difficult to do and in some cases are impossible. Even holding hands while waking is hard because I trudge very slowly, and it throws my balance off.

I need more physical space than the average bear to maneuver, and people in the know  often step aside or give me the right of way in tight quarters because they know I don’t walk in a straight line, can’t stop on a dime, and they don’t want to bump into me and potentially cause a fall. Add that to the list of things to feel guilty about.

I’d wager that watching the freak show of me doing anything that requires physical dexterity is painful for anyone who looks. I know K worries about me constantly, and I suspect my son does as well, although he never broaches the subject. So I feel guilty about that too.

Maybe I’m projecting subconscious insecurities about my present and future onto others. Maybe this is a subconscious way of feeling sorry for myself, but I sure as hell hope not because I swore I would never to do that.

As I’ve grown older, I’ve discovered that my father and I are two peas in a pod, and this is a perfect example.  He never wanted to be in a position where people had to cater to him because of failing health. He’d tell us more times than I care to remember that if we ever found him unresponsive, to make sure he didn’t have a pulse before calling 911. Of course, Dad was in his 90’s by then, and never thought he’d make it that far. He had been blessed with good health all his life and was sharp as a tack until he passed away at the age of 96, but the chinks in his armor started appearing several years earlier, and that concerned him.

The bottom line was he never wanted to have anyone disrupt their lives because of his health. I thought he was being ridiculous at the time, but I certainly get it now. He didn’t want to deal with the guilt of being a burden, and that is the crux of the issue for me.

I don’t care what anyone says, when you live with a chronic illness like MS, you become a burden, because people in your life have to pick up the slack for the things you can no longer do. They might not think of it that way, but I do.

Guilt comes with the territory. I don’t believe I’m the only person living with a chronic condition who feels that way, but would love to know if I’m in the minority.