Some days, it’s hard for me to hang out at the ASAP.org forums because there are so many posts from people who grieving over what they cannot do, what they’ve lost. Most of these folks are relatively new to the worlds if illness and disability, so their need to mourn their old lives is a natural part of the process. In my head, I get al this. But in my heart, I sometimes have trouble being supportive or even holding my tongue when there is post after post focusing on what you can’t do anymore, and none that expresses gratitude for all you can do.
To be honest, it’s especially hard for me to relate to people who are so much better off than so many, yet who feel deep down in their hearts that they’re suffering terribly. Don’t get me wrong -- I feel bad that you have a syrinx that has affect your life and brings you some pain. But it’s impossible for me to get all worked up over the fact that your pain is only bad after you play basketball with your kids, or participate in your Wednesday night soccer league. And it doesn’t help that this “severe” pain of your can be managed by an Advil and a good night’s sleep, or that you won’t even need to stay home from work the next day.
I want to be supportive to these people -- I really, really do. And I try.
But to often, their posts -- as necessary as they are to helping these individuals come to terms with their post-disease lives -- do little more than set my own acceptance of my life, and my limitations, back.
I work ever single day to be grateful for what I have left, instead of mourning for what I have lost. Some days it’s easier than others. These are the days when my pain levels are at their lowest (the pain never goes away, but sometimes it fades enough to be little more than background static), my husband is at his happiest, my kitties are being the most loving and cute, and the island looks its best. At these times, all that matters is that I am here to enjoy it with the love of my life, and to take in all that being alive has to offer.
Every now and again, it’s just not possible, and I break down and have a “poor me” day when I cry, whine, and complain about how it’s so unfair that there are so many bad people who escape unscathed while so many people like me, and several friends (Janice, this means you) who do their best to do good are burdened with severe disability and unrelenting pain. And it’s on these days that I lose my patience with the people who don’t seem to understand how relatively well off that they are.
I‘ve learned to be good at biting my tongue when it comes to this type of grieving. What triggers the need may be something as casual as a remark about how horrible it is that they couldn’t do something that‘s on the frivolous list (like getting a seaweed wrap), or as serious as people who seem to be disease shopping -- the kind who are always looking for reasons to believe they have a condition with which they have already been told they don’t have. Either way, these are just reminders of how much I have lost, and as awful as it is to admit, can get to me and distract me from my gratitude that I am not worse off than I already am.
I hope that, in time, the folks who are at this point in their grief over losing the life of a person free of chronic disease will reach a point where they, too, can be grateful for the things they still have, instead of looking only at what’s gone. Until then, on my good days I’ll try to help them see that life is not over just because you need to do some things differently -- and they there’s a lot to be grateful for not matter how bad things can get. And on my bad days, well, what are a few more teeth marks in my tongue?