In light of the comments from the last post, and my thinking about the direction this blog has taken as compared to my earlier one, and also about how much D and I have gone through in the last few years, I thought I'd talk a little bit about my relationship with D. The good, the bad, and the incredible thing we are trying to pull off here.
There are very few people on the planet that I would just write off as being a one dimensional asshole. People have strengths and weaknesses and sometimes these attributes are not compatible with you but may be totally complimentary to someone else. Also, in relationships, people change and have growing pains. D and I are having growing pains.
Here is what I'm struggling with in regards to D. D is extremely disorganized. He has trouble prioritizing and managing his life. He sometimes is unmotivated and cannot come up with a coherent plan of action when trouble arises. He is not very efficient. He has trouble taking charge and committing; taking responsibility for his life. These things are not new. I knew them all along. And they've gotten better and then gotten worse and vice versa. The problem is, as Twisty would say, when you have kids, the gloves come off. I have high standards. What used to pass for me because it was his life and it didn't affect mine that much, now affects me and the kids in way that D does not fully comprehend.
All of these things are either caused by or exacerbated by his disability. First of all, D had way less expectations and responsibility put upon him as a child. When I was working summers and basically taking care of all my own needs except room and board in high school, D was going to summer camps and having his mom do his laundry for him. Then, what happened to him happened to a lot of people who become disabled around 16-18 years old. He missed out on that last stage of development into independence. I swear I should write a dissertation on this, because I've seen this several times. It usually occurs in males more than females. That 16-18 age is about the worst time in your life to get a sudden disability. Every guy I've known that this has happened to got stuck in some way or another and it kind of stunts their maturity in a way. Get disabled earlier and everyone has a chance to get used to it and the different you and watch how you can still develop into an independent adult. Get disabled later in adulthood, and you've already had a chance to establish your own identity and learned how to live on your own and be responsible for your own needs. Guys who get disabled right when they are about to go off into the adult world and then get slammed back into infancy...psychologists should study it because it does something to their development. They get stuck in high school mode with their high school friends. Or they can never get past what they lost, what they were on the cusp of getting. Or they never completely get the confidence to manage their own lives. Its not like you can't get over it, but I've just seen a lot of guys struggle with this. There is something about D that, well, he just doesn't have the life skills and experience to take control of things. He's hardly ever been in the workforce, he has hardly ever lived independently; it is just something that never fully developed in him.
Since I didn't know him before he was disabled, I'm not sure how much his poor management and disorganization was already there before and how much is post disability. The other issue that I struggle with is how D's prescription drug use interferes with his ability to function. D is on enough narcotics and opioids to pretty much knock out an elephant. And he's been on them for years. It is hard for me to know what in his personality he has control over and what is just gone because of the drug use. He is not abusing drugs, they are all prescription and he does make an effort to minimize and control the amount he takes, but over the years, they have affected his brain. It isn't that he is cognitively disabled exactly, he is still very intelligent. But the drugs have dulled and slowed his thought patterns and emotions and ability to solve problems. It is better sometimes and worse other times, but the drugs have definitely impacted who he is. It is very hard for me to define and deal with this.
Now, mix that in with what Kathryn terms Medical Jujitsu. Medical (and I'll add 'Social Services') Jujitsu is the red tape and amount of work you have to do if you have complex health problems just to stay alive. The crap he has to manage just to get the medical care and services he needs is just astronomically ginormous and ridiculous. It is a full-time job. It is a job that makes no sense, is terribly inefficient, and is full of wrong turns and dead ends. People who do not have to deal with social services and medical services often assume it is like dealing with any consumer issue. As if you are a customer and people want to serve you and get your business. As if you can just call up and in one phone call, get your new wheelchair or change medications or arrange for nursing care. These people do not care about you, they are overworked, they are uninformed, and they do not really want your business. (I know there are individuals in the system who are caring and knowledgeable, but the over all system does not support the success of people like D.)
So, when I say that he told me that his father couldn't be his attendant because he is a family member, I am not saying that he is lying. I would not be surprised if someone, somewhere along the way, told him that. What I was more mad about was that it took him YEARS to get the answer. And that he went on for months and months without even trying to do anything about it. These things frustrate me. He is not good about keeping on people to get things done, he tends to just let things go. I think, what has happened with this attendant issue, more than anything else, is that with his dad and I there and willing to take up the slack, it was one thing he could drop off the list of shit he has to do. As much as I understand this, I have been angry that just because it wasn't a priority for HIM, it was a priority for ME and possibly his father. And you can let things go for a few months maybe, but this problem has been going on for so many years that it has deeply impacted my life, his father's life, and probably some others. Including himself.
He has trouble realizing that--what is the expression? An ounce of prevention is equal to a pound of cure? He lives in that state of urgency all the time, when a bit of up front work would help him in the long run. Just one small example: He has to get scrips filled all the time at a drugstore that is a few miles away. (It was close to where we used to live.) So, every few days, either he or his father or I have to run up there and get his scrips. There is a pharmacy within walking distance that also has a drive through and also delivers that he could use. He could save all of us a ton of time and effort if he changed drugstores. But initially, to get that set up would take a bit of doing. He would have to get all of his insurance together, get all of his scrips together and transfer others and go up and establish himself at this pharmacy. But he never has time because he is too busy having to run up at the last minute to the other pharmacy. Can I help him with this? Sure! If he would help me! I would have to go through all of his stuff to find everything you need, and without his help, this is damned near impossible.
Many times, I get frustrated as his attendant because he does not utilize me (or his other attendants) very well. I chop out big blocks of time to go over there and do whatever he needs me to do. I see things that need to be done all over the place. But he never wants to do them. Now, of course, I go ahead and do the no brainer stuff like laundry and housework without needing him, but other things I offer to do require his participation. He is not in the mood or he is too tired or whatever. So many times, he will take the kids to the computer and play games the whole time and not do anything useful with me when I'm there to help him. Drives me up a tree. If I'm there, I want to work. I don't want to waste my life away waiting for him to decide when he is ready to do something. But, as an attendant, I can't MAKE him utilize me the way I want him to. He has free will. If he wants to have an apartment so disorganized that he can't find his insurance cards or whatever, I can't put a gun to his head and make him let me organize things. (I do organize things a bit, but some of the stuff he has is just stacks of computer software inventory or whatever that I have no idea what to do with.) So, mostly, I just have to go his speed when I'm over there, which to me feels very inefficient and like a waste of my time.
So, all that is to say, that he and I are probably not a good match attendant-wise, but that doesn't mean that he is a lying sack of shit. What he does do, and this is both a good thing and a bad thing, is he has this ability to make the person he's with think that he agrees with everything they say. And then turn around and make someone else think he agrees to the exact opposite. It is good in that he has a lot of tact and diplomacy skills. He puts people at ease. When I have a conflict with the phone company or a landlord or something like that, I'll put D on the case first. Because his diplomacy skills are far above mine. He can be nice and usually get a lot of things done with his "spoon full of sugar." I am "the medicine that goes down" in that I don't have patience for sweet talking idiots into agreeing with me. So, in reverse, when he has not been able to deal with someone like the landlord, he will send me in when he needs someone who is tough and straightforward and to the point to get the job done. So, this is an area where sometimes we compliment each other.
Over the years, I've learned ways to probe him to get to what he really thinks rather than just telling me what I want to hear. It has a lot to do with asking point-blank, closed ended questions. Triangulating my data and cross-examining him. Hey, it works, so don't knock it. I do not want him to tell me what I want to hear, I want to know the truth, see it how he sees it, and to know his opinion. Now most of the time this works, but sometimes not, and then you get a situation where I go along believing for months that he thinks one thing and then I find out differently. To me, this does feel like a lie. And I've told him that. It is not a lie in the traditional sense, but it is a dishonesty to me. So, he knows that and does it less often. Although I still see that he does it with other people all the time. I'm not going to go along and waste my energy trying to control that. He's on his own with other people. So, when you get me and 'other people' together, sometimes you hear different versions of the same story. I'll go back later and corner him on it. This is probably what happened in the dad and the tax/income situation. Not an outright lie, just a different version of events told to me to put me off.
No I don't like it. But he has faults and god knows I have faults. I am impatient, I am quick tempered, and I am a social klutz. He deals with me and I deal with him. And really, in many situations we compliment each other, but in the attendant situation, we clash. Which is why I should not be his main attendant. He needs family, like me, to do the emergency 2am things, but he also needs people to work for him that JUST work for him and who he can boss around without the emotional baggage. The power differential between a disabled person and a less disabled caregiver is real and I make a conscious effort to not abuse this imbalance. And that sometimes means that I have to sit back and watch him lead a disorganized life and make his own choices and handle things his own way, even if it is not how I would handle them.
Our relationship has been in a real tough spot since the whole foot amputation and his mother's breaking off the relationship with me. I've talked about all that before, so I won't relive it...I do that enough already. But I was thinking about my old blog and this one, and how this one I am less proud of because it has a lot of bitching, even though this is probably one of the happier times in my life in a lot of ways. The blog gets the spillover crud in my brain sometimes, which is unfortunate. I'm a way better writer than many of these post show. But also in thinking back to my old blog, I think about how we were completely different people then.
When D and I met 13 years ago, I was much less disabled than I am now and so was he. We both were on a career track. He was in engineering school and I was in grad school and working at a major university. We had a social life, we had lots of friends we hung out with. We took trips together and hang out at night spots and whatever. We were disabled people who were "making it." We were all cool and shit. We were "passing."
And I thought at the time that this was because we were such great people at handling our disabilities. And part of it was, and another part of it is that we just weren't all that disabled, comparatively speaking. Functionally, things were just a ton easier back then. Around 2001-2002, both of us, over a period of time, became significantly more unhealthy and we both lost a lot of functioning.
And, okay. So we were just going to adjust. And it would all be temporary. Even if we didn't gain our functioning back, we would adapt and go on. He quit school, I lost my job(s). Okay, but it is still all temporary. We will get back on our feet. And I sort of had. I would not have gone on with having children if I didn't think I was adapted enough and was ready. And he sort of did, with much encouragement from me telling him that waiting for inspiration to strike is a waste of time he doesn't have and that he just needs to DO IT ANYWAY, he went back to school.
And I continued to shoot forward with my goals, having kids, trying to come up with a home business that would allow me to stay insured, moving out of an apartment, relearning how to use the computer, etc. And I thought he did, too. He was so responsible and so committed and so supportive during my pregnancy, that I thought I was seeing him come with me and forge ahead no matter what our bodies did to us.
But a lot of bad things happened while we were struggling to go on with life and our goals. The most surprising thing that happened to both of us is that we felt we were basically abandoned. Our support system fell apart before our eyes and, for us, it seemed to come out of nowhere. I'm all for people setting boundries with what they can and are willing to help with, but it wasn't that. People just disappeared from our lives. Some of it was no one's fault, like my mother dying. Some of it was me waking up to some of the realities of my family and finding out what they really thought of disabled people and that I might not be safe there should I become more significantly disabled. Some of it was people at work who were no longer interested in me if I was a stay at home mom. I was only a good little disabled example if I was an employed little disabled example. (2/3 of my job at my previous employer seemed to be being a good little disabled prop.) And then members of D's family basically abandoned us. Even when he talks to some of them some of the time, it is still an abandonment issue for him as well. And for me, I lost a LOT of acquaintances who just couldn't deal with my hearing issues anymore. D lost a lot of acquaintances when he quit school and also when he became less and less able to get out and around.
And, of course, neither of us are perfect and we've both made mistakes, but we knew we didn't deserve this. We are basically good people. We are good to others. We try to treat others as we'd want to be treated. We try to respect others differences and choices. We try to be good friends. I think about all the help I have given to others, and how hard I've tried to be kind, and I think, what happened to karma? Why are people treating our disability stuff as personal faults of our personalities? Why did it bite us so hard in the ass at such a vulnerable time? I don't know the answer. But I do know that we did not deserve to be ditched by nearly everyone.
So, yeah. I'm bitter. And this blog reflects a lot of that. And I don't like that about myself. I don't like that about this blog. But, I think that since going to therapy about it was pretty much a logistical and financial impossibility, writing the blog has been good, cheap therapy. And this good cheap therapy has not only allowed me to make some great online friends, it has allowed me to focus on being a good parent during all of my non-blogging hours.
The bitterness has faded a lot over time. And the pains are not really all that sharp anymore. All the wonderful little moments with D and with our children has really also been great therapy. D and I have slowly settled in to our new reality and found ways to improve on our lives.
There are old connections that were abandoned and probably need to stay that way. There were abandoned connections that we are trying to salvage and rebuild, like with D's father and my father and sister. But mostly we are working on forging ahead. We are making new connections. Some of them are cherished online connections, or through church, or through activities with the children, or through the disabled community or even some of D's health care workers have become new friends. We are building from scratch, and having to carefully redefine for others who we are and what we can and can't do, which sometimes we don't even know for ourselves.
We are looking at new ways to do things to adjust to our disabilities. D is always fiddling with equipment and medications. I've almost entirely abandoned the telephone and am using i711 almost exclusively now, except for close friends and family. I've reached out to the CODA and deaf community for connections for me and the boys. D has reached out to a wheelchair user father. We look at recreation and socialization differently. Maybe we'll never go on a long driving vacation, but can we get away to something affordable and nature-y and accessible near us? What kind of activities can we get the kids in where we can participate and be accepted. (This is another big fat reason to homeschool. Homeschooling seems to trump some of our other issues and people find a kinship with us in that way.) All of these things are the easy things. We have these bodies and we just have to adapt and move on. Find our ordinary world.
Harder is the letting go of the past, letting go of the anger, and just enjoying remembering it for what it was. As social as I was in the mid-nineties, as easy as communication was back then, I was still just an insecure girl whose self-esteem was wrapped up in how attractive other guys found my body. Now, I'm such a stronger feminist and social justice advocate and yes, unfortunately for D, he is "My Nigel" no longer. So he changes and I change and it is much better to be smart and disabled in your 30's than giggly and insecure in your 20's. Momhood is great, and I think D thinks that dadhood is pretty great as well. We are very lucky.
The disability awareness thing I was asked to do actually looks pretty cool. It is all about families. And they aren't separating us all out by race or sexual orientation or whatever, it is just all about different families. Adoption, single parent, same-sex, mixed race, step-families and divorce, etc. So, we have just been asked to talk about our family, along with other families, to kids. I still have to think about how and if I will present the donor issue. I actually think that I am going to present it, but I need to do some thinking about the language I'll use.
First crack at it:
My Family
I am lucky enough to have spent thirteen years with my best friend. And for a long time, I wanted to be a mother. And D wanted to be a father. And we needed some help. So the third special person in our family is "Sergei," our children's biological father. And, wow! Were we surprised when we had twins! And so were a lot of other people. Some people were angry at us and didn't think we should have kids. But we knew we would be good parents and we were so lucky because we had two beautiful boys, named Aaron and Naim. And through many hard times, and many times that were very hurtful when others didn't accept us or didn't try to understand what we were going through, we worked hard to work through it. And all of this work and love led to new experiences and opportunities and friendships and love that grew and grew and grew. And although we are a funny little family to watch --living in our separate houses and walking, rolling, and tapping back and forth between them--it is all home, and it is all love, and it is all exactly what a family is.
The description of your family is great. I think it will work well for young kids.
Posted by: Mayhem | August 16, 2007 at 09:20 AM
I wish I was close enough to come over and babysit.
I appreciate what you've said about D. here. I am also partnered with my imperfect best friend, and really, what could be better?
Posted by: cherylc | August 16, 2007 at 10:26 AM
What you said about being abandoned really hit home. I later heard a great warning. Someone said that they were told when their micro-preemies were born that their friends would fall into 3 catagories - gingerbread people, wanna-bes and rocks. The tricky part is that you can never tell who will be what beforehand.{In case it isnt obvious, rocks stick around, wanna-bes are your friends but cant help you in any appreciable way because of their own bad stuff, and gingerbread people who run run as fast as they can.)
I was shocked when my best friend abandoned me after I had Jake. And my sister. I wouldnt have believed it. I too, am still working through the bitterness.
Blogging is very cheap therapy! Worth a lot tho.
Here's a little armchair therapy for you - I used to be the same way you describe D. I let little things pile up until they reached critical mass. After one such meltdown it finally occurred to me that I crave control in my life, order. I rarely feel in control. If I let it go critical then I can swoop in and fix everything, making me feel like I am in control.
There is no better feeling than being able to see instant results for your efforts. You dont see that if there is never a problem to begin with.
Now that Ive solved all your problems, on to world peace!
:: Hugs::
Posted by: That Girl | August 17, 2007 at 08:08 PM