Monday, October 10, 2011

The Doctor, Thankfully, Got It Wrong

Perhaps the starkest, bleakest, conversation I have ever had took place in mere seconds.

It was near time for me to leave the hospital. By then it was clear that I had survived where it was predicted I would not. I was yet too weak to be feeling joyous at the prospect of more time. The doctor, a man who loved to have information pried out of him, had come into the room to check on me. I was a little surprised because over the last couple of days, he had gone from a gray worried face to one that was a tad more reassuring. But at that moment, his worried face was back.

He'd taken my pulse, which he did ever single time he came to see me. It was as if he had to be reassured that I had indeed lived and that I was indeed going out into a future. As he was noting the rate of my heart, he opened my mouth and broke it. "You need to prepare yourself for what comes next. Most couples do not survive late onset disability." And then he was gone.

As his words found there way into my heart and mind, I lay there completely traumatized. It was like I'd had my breath punched out of me. My aloneness, something always present in every life, took hold of me. The doctor was gone so I couldn't protest. I couldn't shout out that we'd been together for nearly forty years. That I was sure, really sure, that it was not, would not be, over. Instead of shouting out, I shouted in. Like I wanted to shout down the specter of a Joe-less life, a Joe-less future.

I don't know if what the doctor said was true. I do know that what the doctor said was cruel. I now know that what the doctor had said, about 'us' was simply wrong. I had no cause to fear. But I did not know that then.

Until now, I've never spoken of this moment. Until Joe reads this when he gets up this morning, he will not know of it. I didn't tell him, at first, because I didn't want to put the idea in his head. I didn't want to bring up and discuss the possibility of a leaving that I was sure I'd not survive. A life on wheels did not frighten me. A life off the rails did. So, I kept quiet and let the fear settle. Then, later, much later, I couldn't because I hadn't.

Its five years later and I'm writing about gratefulness. I don't want to say that I'm grateful for not being left - though I am. But I have always felt that gratitude for what 'is not' leads the human heart and the human soul down the wrong path. Instead I want to be grateful for what is - the faithfulness, steadfastness, endurance of loving commitment. The desire to live with and love a constantly changing person.

I heard once, in a restaurant, a group of friends celebrating an anniversary. A wife toasted her husband saying that he was 'the same wonderful man she had married'. The idea of that horrified me. To be with the same person for 40 or 50 or 60 years. How horrible! Joe and I are not married, so I'd need to say in my toast, "Here's to the man Joe's become ... here's to the man he will be ... here's to a lifetime of becoming, together ..." I don't think either of us have ever wished for sameness from the other, a constancy of affection and love - yes, but sameness, no." Even when we first got together, I knew that what was, was; what will be, will be. Then, I never predicted disability, but I didn't predict our life together, as it happened, at all.

When I see couple's out. Couple's who, like us, have (to use the doctor's word) survived disability, I wonder. I wonder at the capacity of the human heart to hold, in loose grasp, the constantly moving, evolving, changing, soul of another. To love in this moment, with the 'now' clearly understood is one thing. But to continue to love in the next moment, with a different 'now' is another. To be loved "now" along with all the "thens" causes me, here on the dark early morning of a Thanksgiving Monday, to feel grateful.

(Image of a turkey holding aloft a Canadian flag. "Happy Thanksgiving, eh!" is written beside. Turkey looks to be relieved that the feast has come and gone and he ... like love ... has survived.)


Andrea S. said...

The doctor probably thought he was doing a kindness in preparing you. But I agree, it was actually cruel. Even if it had been true for your particular case, how could it have helped to raise the possibility then just dump you to deal with the fears and uncertainty on your own without any further support?

How sad that some people don't give love enough chance to show its strength before it's judged.

Jan said...

The doctor was cruel and I am challenged to ask why? It was a statement that was uncalled for and not productive at all.

Dave your post was beautiful and describes what love is. Both you and Joe are lucky to have someone who is able to fall in love with a person and continue to grow and love each other through the evolution of life. This is a real cause for celebration and thanksgiving.
Have a great day and thank you for making mine better

Glee said...

Doctors, in relation to disability, are often wrong!

Happy said...

It might have been helpful to say 'disability can be challenging to a relationship' and point you towards support networks for that sort of thing. But just to say 'It's probably over' is cruel and unjustified.

And 40 years together? Wow!

Noisyworld said...

<3 can conquer anything IF it tries :)

I can see why the doctor said it but he was completely out of line to say it.

Andrea S. said...

I know I've already chimed in on this ... but I went on thinking about it as the morning went on. This is part of a wider trend among so many doctors when it comes to disability, isn't it? So my question is: How can we effect wider, systematic change to educate doctors about disability and influence their attitudes?

For example, many doctors STILL TODAY tell parents of deaf children to not allow sign language on the ridiculous and COMPLETELY DISPROVEN idea that signing will inhibit linguistic development and the ability to speak! In fact, some doctors REQUIRE parents to not allow sign before they will consent to do a cochlear implant surgery.

And, many of the people reading this blog are very distressingly aware that many doctors actively encourage parents to abort just because the fetus has Down Syndrome or some other disability. And in encouraging this, they feed parents horrifying mis-information about the actual lives and experiences of people with Down Syndrome.

And there is also research showing that not only do non-disabled people in general often tend to greatly under-estimate the quality of life with a disability (compared to how people with disabilities themselves rate it), but doctors tend to under-estimate quality of life more than anyone else. When you consider that they are often in positions of such profound life-and-death power over people with disabilities, that should be down right frightening.

What can we do, collectively or individually, to reach out to medical schools to educate them about the VITAL NEED for their medical students to learn more accurate information about the actual daily lives of people with various types of disabilities or impairments so they don't keep feeding alarmist (and even harmful!) mis-information to their patients? How do we reach currently practing doctors with this kind of education as well?

Hospital social workers should also be part of this equation, because they may often work with out-going patients to help them set up services they need to live more independently at home. They, too, need an accurate understanding of what it is like to adjust to a new disability, and the value of connecting with "mentors" who have more experience living with a disability who can advise them along the way.

Dave, I apologize if this takes discussion in a direction you didn't want it to go, given that your intended focus had been on being thankful rather than trying to fix things. I know you're generally tolerant of open discussion, but wanted to say I hope this wasn't too far off topic. Thanks for offering us this forum for shared experiences!

Tony said...

I'm actually not getting the cruelty. Many people ditch someone who becomes disabled. The vast majority of the population when polled states that they would never even consider having sex with someone who has a "physical disability." I'm not in the habit of dating but my understanding is that this is usually a perquisite. Stating a common prejudice isn't an example of doctors being prejudiced.

As for whether this is necessary- some people's entire support network is the person they are dating, in terms of housing, finances, etc. So I think someone who is newly disabled shouldn't have to face the prospect of being thrown out on the street with no preparation. I think this is good information to give people.

The doctor said:
"You need to prepare yourself for what comes next. Most couples do not survive late onset disability."

This is just statement of fact. He did not state that Dave Hingsburger's relationship in particular would end, only that most did. I don't see how this is comparable to all the things doctors tell people about developmentally disabled children.

I'm not trying to be mean here but I really don't get it. I mean you could argue that doctors should only worry about sicknesses and injuries but I'm not sure that's true.

Anonymous said...

"So I think someone who is newly disabled shouldn't have to face the prospect of being thrown out on the street with no preparation. I think this is good information to give people. "

What good is it to point out a problem, when you were at your weakest, physically and mentally, without offering help?

Like Happy said, it would be one thing to offer support networks, and help with dealing with problems, but this doctor did neither.

Thank goodness your Joe is such a wonderful person. He's usually at the background of your posts, but it's clear you two have something special and wonderful.


Beth said...

Seconded, Andrea. It would definitely be good if doctors and other health professionals knew more about living with disabilities and disabling conditions. It's difficult for me to find understanding doctors, therapists, etc.

Tony, I think it was inappropriate for the doctor to say if only because it makes it sound like that expression of prejudice is simply the natural state of things. Better would have been to say that disability can be very difficult for loved ones to become comfortable with and then offer some resources to help in this troubled time of coming to terms with disability, the new normal. That would have been realms better than saying "You better be prepared because most people leave", which not only leaves you with no resources to change that but also encourages you to expect your partner to leave -- not at all a good place to be.
I'm in a long term relationship that began after I was diagnosed but before most of my disabilities came to be. My partner has a congenital disability and has been involved in the disability community all his life. Before we began our relationship, we talked about this. He's known people whose marriage had dissolved because one partner said they "couldn't handle" the other's disability even though it hadn't changed. (Personally, I think it's just a convenient excuse.) From the very beginning, we said we would not leave each other because of disability.
It took a bit to get used to each other's capabilities. There have been some very hard times when new or worsening disabilities came up. Particularly difficult was coming to terms with the mental disabilities that meant things needed to be stated directly but also entailed being very slow in mentally processing and being able to state that very need well enough to be understood!
My partner takes the position that illness and disability is hardest on the one that has said illness or disability. He thinks the partner should try to understand and adapt to the new normal while supporting the loved one with the illness or disability to do the same.
I'm very thankful my partner has such a wonderful position on this. Neither of us have to worry about the other one leaving because we will both adjust to whatever disability either of us have. I don't think I've worried about that since a year or two after we got together. It's nice to have that constant, that security and stability that comes with deep love. wonderful.

Dave, when Joe read this, I hope he gave you a huge hug.

Tony said...

Okay, thanks to you all. I regretted commenting after I did and thought about asking to have the comment deleted because people get really mad at me about stuff like this. But all that makes sense and I agree it could have been handled better.

It's possible that the doctor didn't know HOW to handle it better (I might not have), but I get that's not the point of this blog post.

Dave Hingsburger said...

Tony, please do not remove your comment, also, please never censor an honest opinion. I like debate and differing points of view. You brought a new dimension to the discussion. I hadn't made it clear that dropping a bomb and then striding out leaving me utterly alone was what I found cruel.

Andrea, like with Tony, take the discussion any where you wish to go. You are right, I like discussion and like people going where ever they want with it.

Others, thanks for the discussion. I wrote this only thinking of it as part of the 'thanksgiving series' that I wanted to write. I see, from the comments that there was more behind the words. The discussion brought that forward.

wheeliecrone said...

In my opinion, cruelty is an intention.
I suspect that your doctor had no intention to be cruel. I do not think that he was trying to hurt you. He had a piece of information. He shared it. Although he was probably a very intelligent person, what he did was a thoughtless, stupid act.

Doctors are sometimes so blinded by statistics and scientific knowledge that they completely forget the really important things in life.

And clearly, your doctor had no idea about the quality of Joe's character or the depth and breadth of the relationship that you and Joe have built together.

ivanova said...

An insensitive doctor, I'm so surprised. For me, the top story here is Dave and Joe's steadfast love. Good work, fellas! We should all be so lucky in love. Happy Canadian Thanksgiving, or probably it's just called Thanksgiving.

Tony said...

Dave Hingsburger, I don't think I CAN delete the comment but I thought about asking you to. Thank you for saying that, though. The blog waters do seem have remained calm tonight so I guess it was okay.

I guess I projected and saw the doctor leaving suddenly as basically running away because he didn't know how to have that conversation. But if it was a "I'm a busy doctor and don't have time for this" then I could see the problem and I definitely have seen people like that. I remember one nurse getting mad at me once for having a panic attack near the end of her shift.

Happy said...

When I became disabled, a large part of what made our marriage "us" had to be re-evaluated, re-negotiated. It's hard. So many of our dreams were gone. We had to mourn those before we could make new ones, I think. And every so often we get blindsided with the discovery of something unexpected that we didn't realize was now gone.

Yeah, that's tough. But saying 'and now the relationship is probably over' seems a lesser variation of 'so let's schedule the abortion.'

By all means, let's prepare parents and spouses for having a disabled person in their lives, and a newly disabled person for the changes that will come in their lives. But that's not the way.

Lene Andersen said...

ALright, so the doctor might be sharing a reality, but leaving right after? Just barfing up that horror right there and swanning off, out of the door? Good lord, what a cruel man! And what an unimaginative one. After 40 years together, your life together is about more than the exterior. I wonder... that statement said more about his lack of faith than anything else.

Joe's a good guy. So are you. You're one of those couples that I look at (from afar, over an internet connection) and hope that my love and I will know the same kind of connection.

Kris S. said...

Simply lovely, Dave. You are a lucky man, as is Mr. Jobes.

Kris S. said...

Simply lovely, Dave. You are a lucky man, as is Mr. Jobes.

Shan said...

Doctors are usually fairly intelligent - more so than the average....well I was going to say "the average Joe"...ha ha...but you get my point. My friend, a disabled learning assistance coordinator at a local school, told me of a theory that most of our culture's 'geniuses' were on the autism spectrum...maybe it's not such a surprise that so many of them say nothing, or drop verbal bombs and then dash off to avoid the reverberations. I never met anyone so intelligent, reserved and socially awkward than the surgeon who performed my sister's/my husband's kidney transplant.

Yes, ivanova, it is simply called Thanksgiving - thank you for that! Adding the "Canadian"...a perennial irritation to me.

Dave, I'm cheering, stomping, and blasting an air horn at your "not the same person as 40 years ago" paragraph. Whenever I hear someone talk about love and marriage as though there's some prize awarded for feeling just the same as you did X years ago, I cringe. There's a point to the first flush of love, and it's NOT meant to last -- it's meant to be replaced by something more weather-beaten and solid.


Elizabeth McClung said...

Stangely this was one of the first things told us as well. though I think it was a care association, that 90% of male partners leave, and over 50% of females partner's leave. I've never found it a particularly useful piece of information but it is one that sort of glows neon in the background during stresful times. I think if accompanied with "And this how those who stay stick together...." would have been useful.