Monday, May 26, 2008

Truth! You Can't Handle the Truth!?

Does anyone catch the movie reference here – if so, let me know. I can see the scene between Tom Cruise and Jack Nicholson but can’t remember the movie. I’m not a big Tom Cruise fan – he’s just too much – too pretty, too excited and too weird. However, I remember the line from this movie and decided to use it for this post because it seemed appropriate.

How many of us CAN handle the truth? I would like to think I could but within the last year and a half, I don’t know that I could have and apparently so have other people. I don’t want to imply that anyone has lied to me but instead I would say they have withheld information. I still haven’t decided whether this is a good thing or not.

First example – the car accident. This was the beginning. One of the nurses asked me how they could contact Jim – I told her and she asked if it was ok to tell him that I “just” had a broken ankle so he wouldn’t panic. I said yes as I figured one family car accident in a day was enough. Jim’s reaction (understandably) was to take his sweet old time to get to the hospital. This just about drove me crazy – so I kind of wish that she would have shared a bit more of the truth with him.

I also remember lying in the emergency room with people busy around me and watching a police officer quietly lead Jim away. I had a good idea of what they were talking about. The police officer told Jim about the fatalities and suggested that he not tell me and keep TV and newspapers away from me for a while. I already knew about this – after all, I was there.

The next person to get in on the action was my orthopedic surgeon who proceeded to release information to me a little bit at a time over the next year. He told me I would walk again and I believed that I would be ok – back to my old self in a couple months. As time went on, this is what I learned to be the truth:

Ø I would never be “ok” again. I would walk, but there would be two more surgeries, months of physio and pain with every step. I would limp for the rest of my life. I will need more surgeries. I will get arthritis (I already have).
Ø My injuries were so bad that they almost amputated my foot.
Ø I would never do many of the things I enjoy again – hiking, walking my dog, curling, golf, tennis, canoeing, strolling through foreign cites for hours, dancing, maybe my job, etc.
Ø I would rely on others for help for most things – going to the bathroom, taking a shower, going grocery shopping, cleaning my house, caring for my son, etc.

The list goes on but I’m sure you get the idea. I know I’m dragging on here, but I do have a point. I’m guessing that not knowing the whole truth immediately was a good thing in a way. If someone would have told me all of the above and that I would never run and jump with my son, but don’t worry about that because your son will have cerebral palsy and will have to struggle for everything – I don’t know what I would’ve said, done or felt. Maybe I wouldn’t have wanted to work so hard with my own physio and recovery. Maybe I would have had other dark thoughts. I just don’t know.

As for Bennett, it seems people hold back the truth here too. A few weeks ago we brought him to the hospital as he was miserable and had a fever. I was extra concerned because of the recent MRI results that showed hydrocephalus. I shared this with the doctor on call. Bennett had a chest xray done and the doctor came back and told us everything was fine and that he had an ear infection and would prescribe antibiotics. We were relieved and went home. Bennett had his regular doctor’s appointment a couple of weeks later. The doctor said he had received paper work from the hospital that indicated that he had been treated for pneumonia! I said “No, he had an ear infection”. The doctor said “No, it says here ‘the early stages of viral pneumonia’ – there’s nothing about an ear infection. It doesn’t matter because the antibiotics used are the same.”

So, once again someone figured that I “couldn’t handle the truth” and that “ear infection” would be better than “pneumonia”.

What’s my point, you ask? Well it’s this. I guess that in some ways it can be good to not share the whole truth with someone. However, it has all left me so suspicious and paranoid that people aren’t telling me things – especially when it comes to Bennett. I’m so worried that something else will come out of left field and knock the wind out of me – something that somebody knew.

So, what do you all think? Is it always better to know the truth, the whole truth and nothing but the truth? Do you want the truth – can you handle it? I’d love to hear any opinions – you can vote in the poll too.


Kiera Beth said...

Hi Barbara

First of all - "A Few Good Men"

Second, I want the whole truth. I remember reading your story where you talk about the word "just." I agree with you that it rarely really means "just."

I have very candid discussions with our OTs and PTs saying that we want to know worst case scenario. We are not going to sue. We see them because they have experience and we want them to share that information with us. We realize that it may not apply or that Ike may end up doing better or worse than that, we just want to have some idea of what could occur.

As for the pneumonia, you are the second person I talked to in this past week who has issues with getting it diagnosed. I am not sure what the reason is that in both cases the medical people opted to either not diagnose or not mention the diagnosis.

You have made mention that you were in rehab still from the car accident, but I had not realized the wide impact it continues to have. I love following your blog because you are so strong and such an inspiration. I have "met" some amazing people through this journey with CP. I wish that none of us were in this place, but am grateful for the technologies that allow us to share experiences.

I hope that Bennett is feeling better and that the meds help.

I have found that I need to be an advocate for Ike and it does involve keeping my own set of his medical records. I have asked all doctors to send me copies of any information put into his file and then I scan it and reference it when talking with other medical professionals. It would be interesting to see what was included in the initial records from the doctor when they first prescribed the antibiotics for Bennett

Mummu and Poppa said...

Barbara, we know that the truth hurts at times but sooner or later it will all come out - and then maybe the pain will be worst by the fact that issues were clouded over.

We agree with Kiera Beth that maybe you should ask for a copy of your doctors records - for you and Bennett. Seeing and reading the message in print - black and white - will not lie.

We are here and we love you all.

If there is anything that we can do to ease your pain 'just' let us know and we will be there.

Your family is most precious to us.

Love and prayers
Mummu and Poppa
xxx ooo xxx ooo xxx ooo

grandma said...

Hi Bennett,
your mommy has been pondering on whether or not the truth, all the truth, should be told or not.
I'm of two minds on that question. There were times when your mommy and uncle were growing up and they were sick that I wanted to know the truth or thought that I wanted to know the truth. What I discovered is that the "truth" can be so scary at times I really didn't want to know it. At least, not right away.
Other times knowing or hearing the truth was so horrifying that my mind refused to grasp or accept it or I heard what I wanted to hear. I also discovered that the word "truth" is a subjective term that can only be interpreted
personally. (It can also be interpreted in as many ways as there are people around)
Sometimes I want to know all the truth and sometimes...... So, my answer to your mommy's question boils down to this. Damned if you do tell the whole "truth" and damned if you don't.
Lots of love, hugs and kisses

Barbara said...

I can't really make up my mind. Like I said, if I had known everything the day after the accident I might not have wanted to go on. However, as mummu said finding out later doesn't make it easier either.

Like you Kiera, I'm pretty sure most of the time that I want to know the whole truth with Bennett. I want to know the worst case scenarios but I also want to know the good scenarios too. And some days I can handle more than others.

So, I guess I'm kind of somewhere in between, just like my mother.

Bonnie said...

Well now - it is time for your "old" aunt "the nun" to vote in on this. First off - - Kiera is right - the quote if from "A Few Good Men" (Yes, even I saw that movie).

Re truth - - it comes in varying sizes and is very subjective. Re the accident - they would not tell Jim the full extent of your injuries so he would not get in an accident himself as he tried to get to the hospital.

Although you were seriously injured, I can tell you from working in the ER, that you begin to look at life from two persepctives - those who will survive their injuries and those who won't. Sounds pretty harsh - but you are usually so happy when you know that someone "only" has fractures and is medically stable, you begin to not think long-term, rehab thoughts. You think - Airway; Bleeding; Breathing. After that - everything else becomes icing on the cake. I know - not to the patient - - but to us who work in trauma. We know there will be a lifetime of living with rehab from injuries as severe as yours - and we are just so glad you are alive, it puts life into perspective.

I don't want this to sound callous - but there are a lot worse injuries than those you sustained - as awful as those were. (Are you still talking to me??) The staff and your ortho surgeon really didn't lie to you. You are able to walk (even if your orthopod entertained notions of amputation). For the medical staff, they always live from a place of hope and try to have the best outcome possible. Why settle for something as devestating as permanent loss of a limb if you can fight to save someone's capacity to walk - even if it is with a limp and with pain? The pain of amputations, ulcers that develop on stumps, and struggle to ambulate, are all much more severe than you are experiencing. (I know, it doesn't feel that way when you are the one in pain. I'm sure on a good day you wonder if it would be better to have a prosthesis. Trust me - it isn't. You get phantom limb pain for your life - e.g., pain your foot, even though you don't have a foot. The nerve endings are still there.)

Re the pneumonia - - I am not surprised that this happened. I can tell you that often the ER docs might "miss" a pneumonia in an x-ray, but can see inflamed membranes, including the ears. Your ER doc probably really thought Bennett did have an ear infection and he was treating him for that. When the radiologist read the x-ray, he would have probably seen more than the ER Doc would have - because that is their speciality. Don't think the ER doc is incompetent - he's not. He's great at his specialty - trauma, and can see the "big" things in xrays. Early viral pneunmonia can be difficult to see in the lung margins. So no one made a mistake - and I truly don't believe anyone tried to keep the truth from you. They just gave you the truth they believed - and thankfully, the antibiotics took care of his ears and the pneumonia. It is rare for kids to have "just" pneumonia. Because their ear canals are connected to their throats, in most instances, their ears are also inflammed. Everything is so interconnected.

You entitlted your blog, "Truth! You can't handle the truth!?" I don't think anyone really believes that. If there are medical personnel who share the truth with you in small doses - trust me - it is out of their desire to be compassionate. I concur that straight talk has to be encouraged - and no one would intentionally lie to you. (At least, that is my experience).

On another note - - you were all in my homily at the Associate commitment ceremonies both in Sudbury at Holy Redeemer Church and at our Motherhouse. I told the group how,when Bennett was born, the doc gave him to Jim and said "Put him under your shirt, next to your body. He's cold and needs the warmth of your body." I referenced this scene because the scripture reading for mass was "The Vine and the Branches" - and how we need to be connected to the vine in order to have life. I noted that Bennett needed first the warmth and love of his mom in her body - and then had his dad to hold him close and keep him warm - and that this is how I know it is with God. We need to stay close to be warm and have soft hearts.

So . . . you are all "stars" in my books. I have been so touched by your courage, love, and perseverance. If ever I wanted a human example of self-emptying love, I need only look at you 3 (well, 4 if you count Bowser, and who wouldn't count him??). You are all a special grace in my life, and for each of you, I am so very grateful.

Lots of love,
Auntie Bonnie
p.s. I am off to Edmonton tomorrow, then on to Quebec on Tuesday - - so if I don't respond to your blog entries for the next 1.5 weeks - it's not lack of interest - just lack of computer!

Barbara said...

I appreciate your point of view as someone who has experience in the medical profession. However, please know that my post wasn’t meant to criticize doctors or nurses. I’m very grateful for everything they’ve done and how they handled my situation with compassion. As I said in my post, I don’t believe that anyone lied to me, however, they did withhold the truth. In each case they did so for compassionate reasons and as I have said, if I would have known the whole truth I probably would not have wanted to go on. My orthopedic surgeon often said to me as the months went on, “You didn’t need to know this at the time, but…”. Let me tell you, I can’t wait for the day when we have a visit and he doesn’t use these words. As a doctor he was dealing with the “next 3 inches” rather than the “next 3 miles” and in my unique case at that time, he was right to do this.

As for my injuries, please know that I am well aware of how much worse things could have been. Believe that as much as I get frustrated with my pain and limitations, I am grateful every day that things aren’t worse. I know people had and have had worse injuries than me – like the two people who were killed and the other woman who was airlifted to the hospital. However, this post isn’t about them and as much as I know things could have been worse they are still bad if you’re me. As for the amputation issue, I will always be grateful to my doctor for taking the time and making the effort to save my foot. I believe a lesser doctor wouldn’t have tried. I want my foot to stay with me forever despite the lumps, bumps, swelling, scars, etc.

Re. the pneumonia. You would know better than I how things work, but I would think that somewhere in the paperwork that our family doctor received that the words ear infection would have been mentioned especially since that is what we, the parents, were told he was being treated for. If that information was totally left out then I would have to say that is negligence on the part of our (overworked and understaffed) medical system.

The ultimate point of my post and I guess it didn’t really come across, is that all this “truth withholding” has left me in a tough situation when it comes to Bennett as I am constantly in a state of fear that people aren’t telling me everything and I’ll be blindsided again. I don’t like feeling this way. The reason I went into everything else is because my history and situation is unique.

Thank you so much for your love and support and keeping us in your prayers. Jim and I appreciate it so much. Have a safe trip!

Bird said...

I really have no idea about these things. Somewhere in internet world someone said, "the truth trickled in slowly." I think that is often the case. Maybe people are hiding things from us or maybe it just takes that long for us to process the whole thing. Maybe our brains can only deal with major things in bits and spurts.

I'm rambling.