So much is going on around me, and in my brain, while my body does little but sleep even when the rest of me appears to be awake. So tired, battling another fever and the unrelenting pull of deep sleep. Thankfully though, my body seems to have rebounded from the bad reaction (an unhappy liver) from the last RA medicine on the list that will not send me into severe anemia or make me swell up like a puffer fish. Or I should say, more like a puffer fish. I’ve got the moon face prednisone thing going on full force but the rest of me is shrinking while I sleep, not that I mind as I have plenty of cushioning provided by years of stress, medications, and finding an enemy in food as so many foods just require too much thought to eat them and cover them with all of the variables that impact my ability to utilize nutrients without running too sweet or too low because some other variable didn’t occur to me and the thought of having to prepare anything, combined with weakened and stiff hands and vertigo, usually is enough to send me back to sleep or weigh me down with a heavy enough blanket that I won’t wander off to find something. This isn’t new. Actually, over the past few weeks I have been eating more and eating better than the past couple of years, and I dropped 15lbs. I just wish I had the energy to go with it and I really just hate being this sick all of the time. I hate not being able to do as much as I want to do for Alex and we don’t get to play together much. Though we have been catching up on movies, and episodes of Little House and the occasional episode of The Golden Girls (he thinks the girls are hilarious).
We are in survival mode thanks to his Dad’s new job, and I spend all of the time when Alex is in school sleeping, but I am getting to spend more time having quiet talks and reading with him. It blows my mind that two years ago he couldn’t tell us the “story” of his day and he mostly spoke in quotes from tv shows and recited lines from books, and now he is just a constant stream of chatter (mostly about 1980′s video games- his latest special interest) and he often shares little tidbits about his day as he’s snuggling into bed for the night. He’s an amazing little boy and the sweetest kid ever. I said to him “I’m sorry I’m so sick all of the time. I just want to have enough energy to play and help you.” and he tells me not to apologize because it’s not my fault and that the stuff I can do to help him and play with him makes me the best Mama ever. I imagine that even without Asperger’s we’d be so close, but I do believe that we are closer because in some ways we are like two exchange students who speak the same language, in a foreign land where nobody speaks their language. It’s frustrating sometimes, but more often than not we both find so much joy in our unique neurobiology.
Though lately, it is the “other” that has been on my mind too, as I feverishly clip blog bits and news pieces to Evernote for focused viewing when I can glue them together in a meaningful form. I hate how non-sick people just don’t get it and offer criticism instead of sympathy or empathy or what all of us people living with degenerative and debilitating illness really would like- to be treated kindly and to be given the benefit of the doubt on occasion. So here are my suggestions for non-sick people who just don’t freaking get it.
Don’t be an asshole because I self-advocate.
Don’t assume that I am negative because I mention chemo on occasion or a medication or physical therapy.
My poor health and my communicating about my experiences (some of them are damn funny, some are poignant, very few are depressing in the grand scheme of things because this being sick thing isn’t a choice, it’s not a personality defect, it’s a body rebelling against itself for unknown reasons that started when I was less than 2 years old. I would be negative and probably go some version of off the deep end if I didn’t talk about it.)
Don’t assume that nobody wants to read about my experiences, you’d be surprised how many of my dearest friends and I have found each other because of our own personal wars. Don’t shit on veterans for talking about their war, especially if you are too young or too healthy to have been enlisted.
Don’t be an asshole because I communicate with other people like me and you overhear the conversation through the din of social networking.
Don’t be an ass and assume that because I can type a few words once a day (or in the case of my blog lately, once every 2 months or so…I am always thinking about my blog and you, dear reader, even if I haven’t been nearly as prolific as I would like) that I can do anything else.
It’s all about the spoons.
Go ahead and be a selfish turd because you feel that I don’t try hard enough or I don’t put the effort into relationships. Totally ignore the fact that my abilities and my availability depend so much more on current technologies than the old school methods you feel are “real communication”. I’m sure people thought the telegraph and telephone were the devil’s playthings, but times they are a changin’ and as much as some like to criticize social networking (typically those who have a very singular and narcissistic and selfish perspective on how they believe everyone else should use it) there are those of us that find Facebook to be a life line and for many of us, it’s not the way we used to do things, but it’s the way we do things now and for those of us who have communication disorders, hearing or speech impairment, are caregivers and/or insomniacs, or just don’t know when we’ll have the time and energy to pick up a phone or if we can even get to the phone if you return our call.
So go ahead, demand that the person in your life who is managing illness use their few precious spoons to call you because you don’t know what it is like to have limited spoons and you don’t know the snowball effect that using up spoons to fast can have on that person, their health, their kids, their home, their job… If you do communicate with them, however briefly, via any social network, just be a judgmental ass and say that the person’s “friends” aren’t real friends because they aren’t live and in person and standing in the same room chatting. Most of us that do prefer this method of communication, due to illness or disability or caregiving and treatment schedules, have been betrayed by our own bodies. For many, social networks are a way to stay alive, be buoyed by shared experiences, be entertained, keep in touch and banish the loneliness that can come when you can’t drive, are stabbed by sunlight, have trouble walking, take medications that alter your ability to operate heavy machinery or even remember to put your pants on before you leave the house to get the mail.
I was just shocked at how much I read over the past couple of weeks about people with any chronic, debilitating illness or any deficit impact communication via any method, all having experiences with complete jerks who say really stupid things about our challenges.
Then again, there are those that see the true beings beneath the scratched and dented exteriors, behind the assistive technologies, and within the neurological differences. Those people are the ones who are the real friends, and it has nothing to do with geographic proximity and everything to do with mutual respect and love and the understanding that some people find triumph in getting an A in a class, some people find it in getting a promotion or a new car, but some of us get to see the beauty in everyday things and the little triumphs that are hard won and brushed aside by many able-bodied souls. I’d love to be in the position to post status updates about keeping up and surpassing the Jones’ (actually, I probably wouldn’t) or feeling like posting what I ate for lunch or that I’m out and about for a mani-pedi and lunch with friends is important news to share. But my life is more complex than that. My friends, my true friends, celebrate the little victories with me, and I rejoice with them when they find their little triumphs. So it’s not “my BLT is repeating on me” or “what color should they do my nails?” but for us the posts about getting through another treatment (or finishing a treatment and getting fantastic labs back!), or having a morning where we felt so good that we sat outside and read a book or that a loved one did something really sweet for us, or for the parents of special needs kids- when our kid reaches one of those little teeny goals that we would have never even considered a goal until we entered this strange and wonderful and brutally hard world of raising a special needs kid to be their best. That’s not negative. That’s amazing.
It feels damn good when something happens that means more hope or progress or even just a good laugh. It feels shitty when other people, who cannot begin to imagine (or can’t even feign empathy or just keep their mouths/fingers still) decide to drop a steamer on these little joys and little pieces of hope that are sweet nectar to those of us who have known and seen the worst in our physical selves, emotions, and in others.
That’s all. End rant. Soapbox being sent out for repairs. Oh who am I kidding, it’s just going to the garage with the other stuff that I will fix one day when I am up to it. I just wanted to put this out there, in hopes that anyone who has been critical of an ill person in their lives, because of what they can no longer do or do differently, will be more mindful if they cannot grasp they why or how. I also wanted to put this out there to remind my fellow beings out there who are feeling muted or lonely that many of us have been there and many of us won’t disappear when the world gets in your way or your body protests everything.
I will post resources and links about communication and relationships when living with chronic illness, or coming to grips with a loved one’s chronic illness, as I find them. I would love if folks would add their experiences and any links or resources they have found helpful, in the comments section.
For now I’ll leave you with one that just makes me feel less like a patient and more like the Chronic Babe that I am. Of course, that is the fantastic ChronicBabe.com (be sure to sign up for the ChronicBabe Goody Bag! It’s a joy to read the email/newsletter and it puts the spring back in my…um in my hair. And eventually my step. Fingers stuck in crossed position.