Monday, May 7, 2012

Recovery Part 3 - What Does Recovery Look Like?


***This is the third post in a series about living with and recovering from serious illness. The first post Recovery-The New Normal appeared two weeks ago. The second post Recovery Part 2- Poem In Your Pocket appeared last week.***

 

I really thought I knew what recovery looked like. I started to write about Jonny's recovery from MVD brain surgery, the moment he emerged from the ICU back in early November 2011, until starting this blog in February. I measured it in terms of Celebrating the Small and Big Milestones. I described it as Navigating a Labyrinth, I talked about  Two Steps Forward One Step Back. ( Please see Brainstorming, for all these posts and an explanation of MVD.) I thought I had it down.


But what I know now, is that what I was describing then, is recovery in the short term. I was monitoring Jonny's hour by hour, day by day improvement and reporting on it.  If you asked the famous surgeon what recovery looks  like - he would say at Jonny's six week check up, after a glance at the scar, that still curves from high up behind Jonny's ear all the way down to his neck, that he was very  pleased with himself and that  from his perspective,  Jonny was recovered and the surgeon was done with him. Jonny however wasn’t nearly done with recovery. As I say inRecovery part2-A poem in your Pocket "Each of the pieces that together make up that experience (of illness/surgery), all need time to heal and to heal in their own time." 

The short term piece of recovery is the most visible piece. It can be measured in terms of hours awake, steps taken, food eaten and milestones accomplished.The scar healing, pain receding and  drug weaning all continue after the magic six week milestone has passed. What happens next- long term recovery  is much harder to measure because it is mostly invisible. It is rarely documented and it is less tangible. It is the  physical and emotional healing that takes place, weeks, months and even years after the initial recovery is over, when there are few visible signs of illness left, but the patient still feels as though they are trudging through treacle. These invisible pieces may include extreme tiredness, discomfort from the surgical site and symptoms that seem alarmingly similar to the original condition and that the doctor /surgeon dismisses as “just part of recovery”.


I would like to highlight some of what one of my friends, N who is in her early forties, wrote to me about her long term recovery from breast cancer, since this week is international breast cancer week


I am over three years now since my diagnosis and even though things are better, they are still far from how they were before I was sick. I am on a discussion group at Breastcancer.org and have forged wonderful relationships with a group of women who all went through BC at the same time as me. We have just been talking about how we are all at our 3 year anniversaries now and we are just now really processing that we have been through the disease, because when you are going through it,  you just don't have the time or energy. The aim is to just get through another day.

So, yes, it definitely lasts for both months and years and because it has such a profound effect on me, it affects the whole family around me.

Physical recovery comes sort of naturally at a pretty slow pace. The outward signs are clear, hair returns, weight comes back on and slowly I began looking a bit more like a normal person.

The emotional recovery is far more complicated though. On the outside, people think that everything is fine. For example, people would say to me "you look beautiful" or "now that is all behind you, we can just get on with it"  I still find that very frustrating.  I am still very tired.

There is alot that people don't see. I think that we put on a show when we are in company and leave the more struggling moments for when we are alone. The challenges are there a long time after the trauma and I am not sure if they ever really go away...




Perhaps, most complicated of all, is that living through long term recovery is a lonely experience. To the outside world, the crisis is over and everyone has to move on. In the short term, there are many practical and obvious things that people can  do such as preparing meals, taking care of the kids, sending messages and of course supplying chocolate. In the longer term the kind of support that is needed is far less obvious and does not follow any rules or conventions. Support can vary from person to person, hour to hour and mood to mood. Even the recipients don’t always know what they need-they just note its presence or absence when it is or isn’t there.This makes it very difficult for someone who wants to help, to know what to do even though the family living through long term recovery need support every bit as much as they did when the illness began.

I would love to be able to give you the recipe for support, but this time, because it is so subjective,  my catering analogies just won’t work. That being said, in my personal and professional life many people have either talked to me about the experience of long term recovery  or asked me how they can help someone in that situation. So here are a few ideas that many have suggested and wished the people who cared about them had known.......

1. Continue to keep in regular touch especially if you are close friends with the family. After the initial period of illness and recovery, many people stop the calls, emails, texts, visits and offers of help, not because they don’t care, but because other situations understandably take precedence. By definition, the impact of those who stay connected is that much greater. It can be very frustrating when the patient or their family members don’t always respond to your outreach but people who are recovering keep telling me how much of a difference it has made when friends are persistent in keeping up the contact.

2. Don’t stop asking people if they need help, even if they haven’t been able to think of anything the last few times you asked. You might just be the person who makes the offer at the exact same time as something is needed. The offer of an odd meal, a walk, a grocery run or playdate might be helpful every now and then. As they say in adverts for winning the lottery, “It could be you..”

3. What people need is often very different from what it is that we would like to do for them. :In the same way that I said that long term recovery can be invisible, the things that help in these circumstances are also mostly out of the public eye. A text, a bit of company, a walk, a hug, a cup of tea or as more than one person said to me, “just being there” can make all the difference to the patient and their caregivers.

4. Looks can be deceptive. Any patient in long term recovery is typically making every effort to appear to the outside world as if everything is going fine because they want it to be that way. They don’t always need you to know what they are feeling but it is worth bearing in mind that they are still experiencing some of the pains and emotions that were transparent at the beginning but are now hidden from view.


5. Know that the patient and care givers really do understand that you have a life to lead.They desperately want everything to be “normal” so that they don’t have to inconvenience other people. They want to have the kind of relationships that are equal. That is part of the reason that people play down the most difficult aspects of this part of recovery. The problem is that what they want and what they need are not the same thing. They want everything to be over with but they need you to be there for them. One person who is in long term recovery said to me, “I want everyone to believe that I am fine but I realize that I need, at least some of them to know what I am going through and I don’t know how to make that work.” Even the most intuitive of friends might find it hard to see this nuance and that is why I mention it here.


Thank you again to all the wonderful people who have given me input for this post. Thank you to all of you who are continuing to look for ways to help them.


Gilly







 Please email me at gilly@bringingbooksofcomfort.org or leave a comment on this post below. I'd love to have your feedback.


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10 comments:

  1. Good advice. Sometimes instinct tells you to be in touch but then you think your way out of it because you don't want to intrude and, as you say, they seem ok and haven't needed anything the last few times. I'll remember this.

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    1. Yes it is such a delicate balance I know. But the truth is, whenever anyone has reached out in the last few months, even if we haven't needed anything, the knowledge that they care and have been thinking about us is heartwarming and a gift in itself.
      Gilly

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  2. Very powerful post as usual. I can very much relate to it especially in terms of the nuance wanting everything to be perfect, but knowing it isn't always and wishing your closest friends could be psychic.

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    1. Yes,I am learning that sometimes, although it is very difficult for me, that I have to sometimes step out of my comfort zone and admit things are not ok. Often the floodgates of caring then open up so fast!

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    2. I think that is one of the most beautiful things about our community.

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  3. The most moving part of this piece for me was reading the admission of lonliness: "Perhaps, most complicated of all, is that living through long term recovery is a lonely experience. To the outside world, the crisis is over and everyone has to move on." The idea that stopped me in my tracks is the itway in which it is complicated. This is so intriguing to me - that everyone needs to move on- that you too want the nightmare to be over and need to move on. But you can't. Is it that we fear that acknowledging the lingering physical, spiritual and emotional recovery might be the very thing that makes the recovery incomplete? There are just so many layers of the recovery process, aren't there? Thank you so much for honestly engaging them.

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  4. In Tear Soup - a beautiful book about healing after loss, the author talks in her tips at the back of her book about grieving and time. She says " most people can tolerate another's loss for about a month before wanting the bereaved person to get back to normal." She does not give hard statistics but I think that most people can only keep up intense support for a certain amount of time -not because they can't deal with the ongoing emotions but each person can only support in an on going consistent way if it is a member of their fsmily or close friend and there is only so much energy anyone has to give.........Thanks for commenting Kara.

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  5. Gilly, another great post. Such an accurate account of life, whether it be after an illness, surgery, or the physical loss of a loved one.
    Number 5 - They desperately want everything to be “normal” You hit the nail on the head there.
    Hope you and your husband are well.
    Liz

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  6. Thank you Liz. Yes I think there are common themes to all major life changes and much of recovery is similar whatever it is that has knocked you off the rails of normal life. ( Whatever that is!) Hope you are having some better days.
    Gilly

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