a little help

This week, I’ve needed a lot of help.  I got rides in to work from my husband, rides home from two different co-workers, and today my little brother is going to drive me to the doctor.

I’m not so great about getting help.  I have a hard time convincing myself that people will not resent needing to help me.  I mean, one or two “favors” is one thing but every day?  Multiple times in a week?  I have this basic, deep rooted assumption that it will be too much.

I have had this for a long time. I’m not sure where it came from.  On reflection just now, I was thinking that the guy I was with before my current husband might be part of the cause.  This boy’s name was Tom.  I say “boy” because although he was only a few years younger than me, he had the maturity of a 18 year old.  An immature 18 year old.  When I got sick with Lyme, he went from freaked out to useless in pretty much no time.  The relationship staggered on for a few years like that, but by the time it ended, him and his useless, immaturity enabling family had decided that I was malingering.  They didn’t say that, they said I was “no fun”, a “granny”, and many other worse things in private I’m sure.  By the end, it had gotten so bad that I was being blamed for any conflict between Tom and his family, and I do mean any.  Tom failed a class (in grad school, you don’t fail classes) and he and his narcissistic father got into a fight about it.  As his dad hung up the phone on him, he yelled something about Tom having “a problem” in his relationship with me and that Tom “needed to fix it”.  Let me just say for the record, I had been nothing but deferential to Tom’s family initially.  It wasn’t until after they promised help with things like a move and two surgeries Tom had and then left us high and dry that I started to voice any objection to their behavior, and even then, I tried very hard not to put Tom in a position where I was pushing him to damn them all.  I was careful not to trash talk them, even when they had done something really, truly rotten.  And believe me, they did do really truly rotten things.

Now I should mention that this is the boy who had type 1 diabetes and who treated it like a chemistry experiment.  That is, he’d eat utter garbage but dose with insulin to “cover” for it.  I had a suspicion that this probably was not a great way to manage diabetes, but it was his life and his body and I’m all about the autonomy.  Or at least I was.  Right up until he got gallbladder disease which announced itself with a nasty bout of pancreatitis late one night.  He was admitted to the hospital after many hours in the ER with Wendell (I don’t recall the ER doc’s last name, just his first) the Wonder.  Wendell the Wonder loaded Tom up full of barium and sent him off for a CT scan – a probably unnecessary CT scan (no other films, no no, just the barium blockade and the extra high radiation exposure CT).  Wendell the Wonder kept Tom in the ER thinking his pain would recede and abnormal labs would resolve just because Wendell was paying attention to them.  No luck.  Tom remained ill.  The CT didn’t show anything interesting.  Tom was admitted.

Tom had a HIDA scan which, the very bad GI doctor informed us, was “within limits”.  The bad GI doctor diagnosed Tom with Gastroparesis Diabeticorum.  I wanted to say “golly doc, I can assign fancy Latin names to shit too.  How about this one?  ‘medicus blennus“‘  Long story short, Tom had gallbladder disease and it took a month and an MRI to diagnose it post discharge.  In the intervening month, Tom would eat like an idiot and ask me to excuse it.  I had already said “I think your gallbladder is fucked.  You get sick every time you have a high fat food.”  I made low to no fat foods for him.  I knocked myself out doing this, but the family fed him things like pasta primavera with cheese and cream sauce.  We’d go out for dinner and Tom would say “Do you think I can get a bacon cheeseburger?”  I finally had had it with this shit, and started saying “I think you should decide for yourself.  I think I don’t want to deal with you being sick all night tonight if you do eat it, so if it were up to me, no – you shouldn’t.  But it’s your body Tom, and clearly you want the bacon cheese burger.”  I was not being passive aggressive, I had been very clear with Tom about how worried it made me when he got sick.  A puking type 1 diabetic is not ok.  I was just completely frayed – I couldn’t understand why he would put this choice on me.  It’s like someone who is stumbling drunk holding up the car keys and saying “do you think I should drive?”  I mean, what are you supposed to say the fifth, sixth, and seventh time they do it?  What do you do when you keep saying “no, I don’t” but other more important people convince him that he’s fine, that it’s not a big deal, that to cave in and limit himself is a sign of weakness not just of body but of mind and basic worth?

During this time and beyond it, I was struggling with endometriosis and the Lyme Disease left overs.  I had doctor’s appointments.  I got sick at work and had to find a ride home.  I passed out.  I missed deadlines in my PhD program.  I knew I needed Tom’s help in the day to day, especially during high volume work times.  E.g., I was scheduling my preliminary exams (for the PhD) and I asked him what month would be good for him.  We get two weeks to take them.  He and I decided on a period when he said he would not be at high work load and could do more of the day to day like shopping and food prep.  “Ok,” I said, “but please don’t start your dissertation proposal until I’m done, ok?  Because I know if you do, you’ll be immersed in that and you won’t have time for food and stuff.”

My prelim time came and about 1/2 week before it, Tom lets it drop that he’s going to start writing his proposal.  His advisor had recommended he do so.  What about our deal?  Well it seems Tom didn’t remember it.  Or didn’t give a shit.  Or didn’t think I needed that much help.  Or thought he could do both.  What he claimed was to not recall, but I had noticed by that point that he “forgot” pretty much anything that was inconvenient to remember or which created the kinds of conflicts that learning to handle is part and parcel of being a grown up.

Our relationship had been strained by his not taking care of himself throughout the gallbladder period, by his family’s just god awful behavior, and by his “forgetting” so many things.  We didn’t fight about my needs and what they meant for us as a couple.  He just shut down.  Ultimately, I and my neediness were blamed for the problems in the relationship.  By “neediness” I mean practical, physical things but also my reaction to finding myself not only without help but supporting this overgrown boy during a time when, for the first time in my life, I did not have extra energy-based resources.

So, this years long experience has not helped my belief that I can need too much for people, that people can burn out, that stressors like a chronic, unexplained illness can create resentment and distance and fractures in what was – under better circumstances – a rather nice, rewarding relationship (and what it can do in the not nice, not otherwise rewarding relationships is another story entirely).  But I know that all this just plugged into an issue I had prior to getting Lyme and not getting better, prior to the endometriosis going into overdrive, prior to the chronic diarrhea and weight loss and malnutrition, prior to the sudden but now chronic hip pain.

I’m not totally sure what that issue is.  I suppose this is what therapy is for.

Today, my brother is taking time off of work to come take me to a doctor’s appointment that I am ambivalent about.  It’s to see a cardiologist.  I have seen a cardiologist before.  But the new PCP is chasing down leads and one of them goes to cardiology.  I’m doing it, and it may win me another day on a monitor or stress test or whatever.  I doubt that it will show anything though, so I’m having a hard time feeling really committed to this.  And I feel like I may be “wasting” a favor, I may be burning through what I can’t help but assume is a limited supply of good, helpful intentions from the people around me.

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2 Comments

  1. queenofoptimism

     /  July 16, 2010

    This is such an excellent post. It gives insight to the perspective of a patient rather than a casual health care user. It shows your point of view and Tom’s. Perhaps part of Tom’s problem was facing the self-imposed guilt of needing help. Not to suggest that he is self aware (clearly he’s not). I just mean that patients face so much, maybe some choose not to put themselves in the patient category.

    As you can tell, your post got me thinking. I’m not articulating my thoughts well but I know what you mean. I feel burdensome and wonder when there will be no one left to ask for favors/help. The worst part is I’d Rather just have people tell me straight out that they can’t or don’t want to help.

    I hate Tom’s family for what they did to you.

    Sorry for rambling… Thanks for sharing yourself in this way.

    Best,
    -Q

    Reply
    • Thanks Queen! I don’t read you as rambling. I’m glad you could relate, well, you know – I’m not happy you’re in a position to relate to the feeling but there’s some comfort in knowing others feel like you do. Less isolated.

      Reply

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