Cheryl was a blog reader of mine and a friend on Facebook. If you look through the comments section of this site, there are many insightful, kind and thought-provoking comments from her. She died at the end of November, but due to the wonders and weirdness of how Facebook works, I just found out yesterday. She had a story done about her in the news a while back, and at first glance when checking Facebook last night, I thought she was sharing another news link about herself. I saw her picture first, but when I read the caption, it was a memorial announcement that her husband had put up on her Facebook page. It’s a little surreal, she announced her own death to me. It hit me surprisingly hard. We never met, but had some things in common. We were both UU’s, we both were in our 40′s with young children, she struggled with Rheumatoid Arthritis and then cancer before she died. She was passionate about motherhood and her children. The thought of her leaving her children behind, Clara who is 10 and August who is 3, is just heartbreaking. The last Facebook message I saw from her was dated November 11th. The day before was her birthday. She just turned 45.
WordPress has a function where you can see all of one person’s comments they’ve ever written on your site. I filtered hers and read through them. They were all supportive and empathetic and kind (much like all of my commenters, I’m lucky that way.) But I noticed many of them started out like this:
“I’m sorry that….”
I’m sorry that your dad is being a dick. I’m sorry that D is sick. I’m sorry that the church is being such a pain. I’m sorry that…put whatever whiny thing I complained about here. It made me think, MY GOD I bitch a lot. This woman’s children just lost their mother and I just go on to complain about all of my little problems. I so, So SO need to go hug my kids and just be happy for what I’ve got, which is an incredible lot!
And although that is probably very true, I’m torn about it in a way, or I struggle with the balance. On the one hand, yes! Very much so it is important to be grateful for what you have and enjoy the moment and not get caught up in the stress of life. That is definitely something I struggle with and is a challenge to me. But also, and this is one of the reasons I blog, you have got to speak truth to power. I am a real person who struggles with real social injustices and personal challenges that are in desperate need of airing out in some kind of national discourse (I’m just one tiny voice among many whose stories deserve to be told, but still, I am ONE.) I do not want to pretend that everything is ok when it is not. But I also want to see all the beauty in life that is all around me. The balance is difficult sometimes. All the time.
What is interesting sometimes is watching the contrast between N and D and how they deal with the bullshit they are dealing with right now. D’s life is all about survival. Some of it is medical survival that is out of anyone’s control. But a large percentage of the shit he deals with is scratching through the disability welfare and healthcare system to maintain the treatment and services he needs to survive. D lives in this parallel fantasy world of SomedaySomewhereLand. He doesn’t ever complain much about the crap he has to do. He doesn’t ever talk about joining an advocacy group or fighting for civil rights. He just plods on and scratches and scrapes his way through a system that is designed to work against him, all while trying to swim above water at the same time. He talks often about all the things he wants to do Someday…Sometime…Somewhere. It has gotten increasingly surreal in the last few years, so much so that sometimes I have questioned his mental functioning levels. After all, years of (legal) narcotics use takes its toll. But I don’t know, I think it is just how he deals with the lot he has been given. His family has always been prone to be very noncommittal to taking action while inventing their own wonderful reality. I don’t know if this is wrong. I do know that I can’t do it.
N, on the other hand, is STRUGGLING with culture shock and life in America. Growing up in Sweden and then spending his adult life in Canada, he is used to a larger safety net, a more egalitarian society, a kinder culture. I truly believe that although he has Swedish roots, he is Canadian in his heart. He will never be American. I don’t know how idealistic he is about Canada, but I do see the utter disbelief he has when he sees some of the elements of life in America. People on the light rail train talking about what hand guns they own. The stuff that went down at Wells Fargo and Oregon Commission for the Blind*, the crap that goes down here with me and D and health insurance.
Just today he had another wicked whiplash of culture shock. This morning was Avery’s IFSP review meeting, and I was trying to get the EI therapist to make a recommendation to medicaid to pay for Avery to have speech therapy once a week. EI can’t admit that they can’t cover his therapy needs because then Medicaid will say they have to pay for his additional therapy. Medicaid won’t pay for additional therapy unless EI says it is necessary. It is all about language and working the system, which the EI person and I were sort of tensely trying to work out. Nik all the sudden goes, “But it’s all PAID for by the STATE!” Which is true. So yeah, everything we are doing is a bit ridiculous. But we are used to the mental muscle it takes to work the system, We don’t even think about it. N is feeling the strain.
Another example is our home health care worker hours. My hours just got cut by 9 (about $100 a month) because everyone’s got cut by 5% for “non-essential” services, i.e. the laundry. But it isn’t like you don’t still fold the laundry and vacuum the floor, you just don’t get paid to do it. Now, we are hearing that the governor is going to cut an additional 5 to 8% in March. For N and I, that is a loss of up to $254 a month. No small change on our budget. For D and others like him, that is the loss of much needed services and makes it harder to employ good people who will stick around. It is damaging to all of our health and well-being.
But wait! There’s more! One of the reasons we took over D’s attendant care was so that N could get health insurance. He has not been insured for over two years now. I don’t know if you know how stressful that is. He can’t go to the doctor when he is sick. We end up waiting things out to see how bad they are (he had a horribly sprained ankle after a bad fall that probably should have been braced and crutched. But we just had him be immobile for awhile. And although it seems to have healed ok, when it is happening you are wondering, Could it be broken? Could it get worse? What will we do? Not to mention just the stress of hoping he doesn’t get hit by a car or get cancer or something all the time because we would be ruined and he might be dead. So anyway, he was required to work 80 hours over two months to get that. And he did that. And we heard nothing about health insurance enrollment. So he calls the state agency and no one will talk to him or return his call. So, then we find out tonight from the union organizer that called asking us to call our governor to reinstate health insurance for home health workers. The state has ended it for all new hires, although others are being grandfathered in. So, no health insurance in our future, now.
I get my usual level of snarky outrage, but also have a whateryagonnado? attitude about the whole thing. You take it and move on. N, who never has had to go uninsured or pay for health care or health insurance premiums for basic care in his entire life, is INCENSED. He thinks we Americans are all a bunch of barbarians and why don’t we just throw the poor and disabled into the gladiator pits for public viewing of our demise because they would probably enjoy it. In a way it is good for me to get that outsiders perspective that I get from N and his friends and family from abroad. They think we are all crazy and they just don’t get it. When you look at it from the outside like that, you see just how stupid it all is.
None of this, however, compares to the horrendous loss that Cheryl Colehour’s family must certainly be feeling right now. And her death was likely out of anyone’s control. It can still piss you off, but there is really nowhere to direct your anger. How fortunate are we that at least when dealing with silly policies and stupid government cutbacks, that there is at least the iota of a chance that you can actually affect something. I do something with my vote, of course, but also by speaking out. It is so often that I talk to people in my mostly white, affluent world who say this or that about social safety programs and health care, yet have never USED or even think they KNOW anyone who has used these programs. It all becomes very theoretical and hypothetical to them. I think it is important to say, hey, this is how if affects real people. That program freeze you skimmed over in the paper means that I, the person right in front of you, can’t get health care. Or that 5% “non-essential” service cut not only cost me a big hunk of my grocery budget, but is putting disabled people in life-threatening situations. (Clean laundry for any catheter-dependent person is ESSENTIAL. Infections are frequent and there can be a fast downward spiral for those who lose services.)
The balance between speaking out against injustices and not getting bogged down under an oppressive system is hard to strike. I think in a way it makes you MORE grateful for everything you have, because it is all so tenuous and nothing is secure. You realize this more when you are at this level of functional survival. I would like to fill up the pages of this blog with nothing but beauty and fun vacations and kid stories. I would love a life where I could just concentrate on those things. But I don’t have it, and one of the few things I can do is talk about it.
But that doesn’t mean I shouldn’t pause a bit more and relish in the good things and take note of all the gratitude I have for the many wonderful things in life. Right now, I am very grateful for each day I am alive to see my kids grow up and share with my family. I am also grateful for having had the honor, through the magical world of blogging, of sharing a tiny piece of the life of Ms. Cheryl Colehour.
*The latest on OCB is that the poor guy that got the job N applied for cannot start working because days after he was hired, OCB was put on some kind of assets and hiring freeze. Nor can he go back to contract work for them because he is a hire. It could be up to six months or more before he will have a start date, or he may never start, depending on what becomes of OCB. I hope he has the means to make it through. But, yeah. Grateful to have dodged that bullet.
Comments on: "Balance" (3)
Wow, Cheryl was a commenter on my blog too. This makes me really sad.
Like you, I’m someone with a disability who interacts socially with a lot of people who have no idea whatsoever about the safety net and how it fails to catch us–and how much effort it takes to make this happen, and that people they know depend on these services. I also am very aware that in my life I have a staggering amount of both advantages and blessings as well as real losses and disadvantages not faced by most people I know socially. I pretty frequently hear something along the lines of, “well, I shouldn’t be complaining to you, I guess,” and as a doctor working at a public hospital serving an urban poor population, I also frequently experience the flip side where I reflect on how trivial my problems are next to those of my patients who are dying/sick/homeless/addicted/impoverished/lonely/uneducated/unsupported/unemployed/exploited/etc. I have long maintained, though, that people’s suffering isn’t really comparable on any kind of scale, and that we all have the right to complain and be bothered by the stuff that troubles us without having to feel guilty because our neighbor is…fill in the blank: dying of cancer, chronically unemployed, was abused as a child, is quadriplegic, whatever. Also that it’s important to address problems as one feels moved without feeling that action is meaningless unless performed on a grand scale.
I’ve had periods in my life where it looked like I might die or be unable to work or be unable to have a family or just be chronically mired in hustling to get the basics I needed without any ability to raise my head out of the water and take a breath. Now I am lucky enough to be a doctor and a mother, with enough resources to cover my needs and most of my wants. I too strive for the kind of balance you talk about in this post. I also relish taking my relative good health, great job, and family a little bit for granted and appreciate having a bit of energy sometimes to attack the occasional injustice. (Though of course, as a wheelchair user who also has a life, I have to let 99.5% of it go…)
I also struggle with this balance problem on a daily basis, in the context of my job. I truly love what I do (I’m a geriatrician) and feel so lucky to have chosen this job, and I realize that many of the people around me are truly dedicated to serving the elderly as well, but I see so many shocking flaws of the healthcare system I’m in that I find myself chronically angry. If I don’t keep protesting and making a fuss, I feel like I would be giving up and accepting mediocrity or worse; it’s just not part of my nature to “let things go”. But it is not fun to feel like I’m always in an antagonistic position, always reacting in righteous anger to flaws in the system or other doctors’ suckiness, and living in a bath of toxic stress hormones. Not to mention that any efforts I make, either to fix the errors of other doctors and take better care of their patients, or to contact people in charge to try to change the system, just result in me being busier and having less free time for my family.
There is no question in my mind, though, that both you and I need to continue to fight to change things, if only to feel like we’re resisting shitty situations; plus I think we do manage to make little changes happen. The question is more in how to manage one’s emotional balance, given the type of people we are and the situations we are battling against.