One of the most difficult lessons that I have learned over the past few years was that I can’t give hope to someone. It is not up to me to tell someone else that everything will be fine. I really resisted this idea at first, but over time I think I am starting to get it.
When I first started training as a peer mentor, someone in the class said something like “I just want to encourage them (parents, families), give them hope”. Our instructor, who was amazing and immensely experienced in dealing with families said very seriously “it is never our job to give someone else hope”. Being the open-minded person I am (not), I immediately thought – “what’s the matter with these people – it’s got to be some provincial liability issue or something”, and to be honest, I was actually so irritated that I wanted to leave. Who were these hope-sucking mongrels? At that time, I equated not giving hope to giving negativity or creating hopelessness, and this couldn’t be further from the truth. Sometimes giving hope means not listening, not understanding, and not realizing the seriousness of something. At times giving hope can create unrealistic expectations. It can be taken as dismissive, abrupt or even haughty. This has been a struggle for me to understand.
I’ll give three examples to demonstrate this:
A young woman is diagnosed with stage four cancer. She is told by her medical team that they are going to try a new medication combo in the hopes that it will at the very least slow down the cancer enough to extend her life for a few years. She calls you devastated and tell you this. You say “it’s alright; everything is going to work out fine – I just know it.”
Your child is preparing for a Taekwondo exam, and you know that they are struggling to meet the requirement set out to pass to the next level. You walk in and say to your child “I absolutely know that you will pass this level – dad and I already bought you a hat to match your new belt”. (I feel that I should point out here that I know absolutely nothing about Taekwondo, so if that’s super obvious from the above example, just move on the example three. My kids aren’t allowed to take Taekwondo because I think their outfits are white and I am not confident enough in my laundry skills to risk the possibility that my children’s outfits would be dingy grey in comparison to their glistening white peers.)
Parents are waiting outside the OR. You go to visit them and offer your support. Their child has had three major strokes in the last 24 hours, and it is obvious that if they even survive the surgery, there will most likely be implications as a result that will likely last through their lifetime. You say to them “it’s ok – everything is going to be just fine”.
These examples can illustrate how dismissive and even hurtful it can be to say ‘everything will be ok’. As for the Taekwondo kid – if he fails, his failure might be amplified as a result of your ‘encouragement’.
I often hear people say “I just don’t know what to say”. I guess what I am learning is that maybe you don’t have to say anything. Definitely don’t dismiss what someone tells you because it makes you uncomfortable. Listen, ask questions, offer prayers and positive thoughts…these are the things patients want. Don’t say everything is going to be ok when you don’t know. I think it’s ok to encourage the person, but don’t predict the future.
I went for a pedicure a few years ago back when this all started. At that time we had just begun to discuss Benjamin’s surgery. At the time his case had been presented to two international panels of doctors. We had consulted with three other doctors about the complexity and possibilities of the surgery. We learned that the less complex part of his surgery – installing the growth rods in his thoracic spine – had about a 120% complication rate. We still don’t fully understand the risk value associated with the more complex cervical spine/upper thoracic osteotomy. We only know that all of these doctors believe that surgery is inevitable, and it is in Benjamin’s best interest to have it earlier rather than later to ensure the healthiest future for him. I was talking about all this stuff while I was getting my pedicure (I had known this woman for a long time), and after I was finished she looked up and said in her strong accent – “no problem – dey do dat all da time – is easy – open up – trow da rod in – close – you go home – seemple…no problem.” Well…ok then! 🙂
Anyways, not much happening here on the medical front. Ben did some x-rays today. We didn’t see much movement, which is disappointing, but we are happy that we saw some movement last week. We will see what happens next week.