But we cannot cling to the old dreams anymore

In the stages of grief, acceptance follows denial. I don’t know if it’s always a linear process, per se, but it wouldn’t surprise me if I leapfrogged over a stage or two given how long I was in denial.

While I can’t say I’ve fully come to the acceptance stage regarding my MS yet, I’m not hiding from it anymore, either. And as I sit and wrestle more with the nature of this chronic illness which will never fully leave me, I’ve noticed just how much society contributes to and reinforces denial. Society doesn’t even slow down for the sick, let alone protect them.

Being sick for long periods of time is simply not allowed in American society. As George W Bush said as president to a mother with three jobs, “you work three jobs? That’s uniquely American, that’s just fantastic.” (I’m paraphrasing slightly, but I looked up the actual quote and it’s pretty close.)

Working three jobs is a “fantastic” thing? I don’t count each of my freelance clients as a separate job in the same way that I would count being at an office or working a cash register. There’s something uniquely draining about having to show up someplace at a specific time, rearrange schedules around each other, and never getting a day off.

There’s a difference between the ordinary human experience of working hard and riding the struggle bus every day without a break. We shouldn’t be collectively applauding the latter but we do. Sometimes it feels like this is the Hunger Games and we’re all volunteering as tribute–not for honor or self-sacrifice, but for the prize of being able to say we suffered the most.

Still, I am reminded of how easy I have it compared to others–sitting at a desk typing is much less physically demanding than carrying food to tables or standing on your feet all day. Even though my disease often significantly slows my thinking speed, at least I can sit down while I work. There are many people even with my disease who have to work on their feet, which I can’t imagine. (Though I’d be fired on my first week on the job as a waitress, since I often can’t hold things steady.)

Yet here I am, still making comparisons to those who have it worse so as to minimize the need to take care of myself. Just because I could write articles from my hospital bed during my last MS relapse that blurred my vision and had cut my typing speed by two-thirds doesn’t mean that I should have. (And the fact that I had to is a major reason I want to have a regular job with paid sick time again…)

And the next time I exchanged email with my sister after my hospitalization (we don’t talk much), she said, “well, at least now you’ll be able to get on meds so this won’t happen again.”

Not “I hope you’re well” or “get some rest.” The implication in saying that now I could get on meds to prevent future relapses puts more faith in those meds than is warranted and makes it seem like illness is avoidable. It also isn’t a far cry from saying it’s my own fault I got sick because I wasn’t taking the meds.

And don’t we all want to think there’s some reason it can’t possibly happen to us? If someone else has a chronic illness, well, surely it must be because of something they did to cause it.

As though multiple sclerosis simply goes away with medication. Even at their supposed peak of effectiveness, the drugs are only alleged to reduce the number of relapses, not eliminate them altogether. There have been no studies that prove that the disease-modifying drugs have prevented anyone’s MS from progressing.

Yet in our society, there’s not much patience for people who aren’t at peak performance, let alone the ones suffering from chronic, incurable conditions. And we expect everyone to be healthy and top-performing, even though our society promotes the exact opposite things that we all need to stay well: clean, healthy food, exercise built into our environments and walkable cities and plenty of rest and vacations.

We reward workaholism. I value and admire workaholism; I still freelanced even while working a job that had me gone from home 60 hours a week. Even though I have this illness that requires a lot of rest, the friends I envy most are the ones with high-powered careers that require long hours and frequent travel. Yet if I were to try to live that type of lifestyle, the toll on my health would be evident in less than a year. Relapse city.

And look at how we, as a society, treat sick people. Since I’ve been coming to terms with my illness–and my fear of losing the ability to walk independently and drive–I’ve started to pay attention to other visibly disabled people. Passers-by tend to have one of two reactions to the disabled: either they pretend they don’t see them (equating them with the sidewalk beggar) or with pity and impatience. I’ve observed more cases than I count of people trying to get into or out of a building at the same time as someone in a wheelchair or with a walker, a situation that almost always brings eyerolls and sighs and impatience.

I’m ashamed to say that at one time, I probably would have had the same reaction. When you’re 100 percent independently mobile, the idea of not being so doesn’t even cross most people’s minds. (And those are just the visible illnesses!)

The challenge as I continually try to accept the existence of my illness and its unpredictable nature is to be grateful for what I can still do at any given time. Right now, I can still walk and drive. But the day may come when I cannot, and I’ll have to focus on what I can still do then. This type of positive thinking doesn’t come naturally to me.

I also have to be patient with others who don’t get it. Like the one friend who told me with alarm that I absolutely must work on improving my balance, because poor balance increases the risk of falling and even dying. Like I don’t know that–but she didn’t understand that poor balance is part of MS. I can do exercises to try to improve it, but I can’t eliminate the symptom. It’s an increased risk I’ll always face.

And in moments like those, I’m reminded that my health means I’m not just like everybody else. This is a really big disease–I’ve seen many websites describe it as a “terrifying” diagnosis–and I’m not doing myself any favors if I pretend I don’t have it.

Look, I didn’t sign up to be the disability advocate, fighting to enlighten and educate those who don’t understand. I didn’t really volunteer to be the crusader against stupidity and ignorance about illness. Yet here I am anyway.

Simply having the illness doesn’t make it easier to be on the receiving end of pity, or clueless assumptions. It’s hard to know how to maintain my dignity and not feel like I’m being treated like a child when others think they know what will fix me (even though they themselves don’t know what it’s like to have this illness.)

But at the same time, I can’t change the fact that this is my reality. I may want to be fiercely independent but it’s often very difficult to be so because of my health. I’m not going to be able to go back to the life I knew when I wasn’t sick. It’s not possible. Because even when my symptoms are somewhat at bay, I have to do the right things to make sure that continues to be true.

I hope the next stage of acceptance will help me get rid of the envy of those who are well and take their wellness for granted. And my envy of those who have access to better resources and healthcare. Because when you have a chronic illness that never goes away, you don’t get the luxury of not thinking about it. I honestly miss that.

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