Monday, July 10, 2017

Please Help Me: An open letter to doctors who help and hinder.

Well holy that was an epic day! So epic that I'm going to share this story as a totally crazy yet serious tale of how our medical system sometimes fails us, and how it also sometimes saves us.

As background to this story, you need to know that my son suffered what we and his doctor assume to be a vaccine injury at nine months of age (his third tetanus/diptheria/pertussis and second MMR vaccine), and has suffered nearly fifteen years of inflammatory reactions to food, and a frustrating inability to gain weight as a result. (Details in a separate post here.) We have a wonderful doctor who is on board with our decision to stop vaccinating after this occurred, and while unable to find any solutions, has at least been kind and thoughtful, helping us to discover some coping strategies along the way.

Unfortunately, our doctor wasn't in, today, when I took my fifteen year old son in to consult after he stepped on a nail. For obvious reasons, I was worried about tetanus, but also worried about another possible vaccine reaction, should we choose to give him a tetanus booster. And here is where my crazy story begins.

The doctor we saw was highly reactive as soon as I mentioned my concern about the vaccine. I hadn't yet managed to tell him my son's history, because he cut me off, and said "Well if you don't want my advice, why do you come in?" This is the third time I've heard that particular bit of arrogance from a doctor, and I want to bring it up here, because it's SO harmful. I felt crushed, and said quite honestly, "The reason I am here is because I DO want your advice. I'm worried about my..." He cut me off again. In fact he cut me off a whole bunch of times, until finally I told him that I was having difficulty explaining our situation because he kept cutting me off.

I was near tears by this point, with the frustration of this and all the other times a doctor hadn't listened, bursting in my heart at once. So when he stopped talking, I took a breath, and told him very clearly, my voice breaking, that my son had had a reaction to his early vaccines, so we were concerned about repeating one of them, and that I was there seeking his advice on how to manage this situation. He chuckled and waved his hand at me, and said "I don't know why you're behaving like this" - by 'like this' I assume he meant verging on tears, since other than that I was sitting calmly trying to explain our situation. I told him "this is my child, and I'm worried for him". He then proceeded to question whether my son had indeed ever been vaccinated, since he didn't have the records, or if we'd even been at that practice very long, until he realized that he was just looking in the wrong place. When he finally found the records and my story was corroborated by our own doctor's notes, he simply referred us for the tetanus antibody blood test I had requested, and also for an immune globulin shot, and a tetanus shot.

I left his office with my son, and got in the car. I felt broken. Just broken. I felt unheard, and unhelped, and uncared for. But because I had my beautiful child limping into the other side of the car, I collected myself up and said we'd go get some tasty lunch at the grocery store before going for the blood test.

Remember how his vaccine reaction caused serious food intolerances? He can't eat gluten, soy, eggs, or beans. Not too bad, except that gluten and soy are dumped liberally everywhere. There are few options other than fruits and veggies that we can buy, but I wanted to get him a treat, after that doctor ordeal. The grocery store didn't have the one type of bread he can eat. So I checked out sushi: all of it contained "soybean spread" - whatever that is. So I asked about the homecut fries in the deli department. I know they come from a bag. "Could you tell me the ingredients", I asked her. She looked at me like I was crazy, so I repeated, "could you please tell me the ingredients in the fries?"


"Well, yes. But I wonder what's on them. It will say on the packaging."

"Probably spices, for sure." She said.

"Yes, I'm sure. But could you check the packaging for the specifics?"

She rolled her eyes and said, "What - you have allergies?"

"Yes", I said.

"Don't buy it," she said, and she turned away.

I bought some popcorn, cheese, and a soy-free chocolate bar and returned to the car, deflated again.

So off we went for a quick and nearly-painless blood-test, and then I parked the car in a two-hour spot and began my search for a doctor who might discuss some possible solutions for our dilemma. I phoned or walked into four offices, and in each was met with the same thing: We have vaccines on site. We won't discuss another option. Finally I managed to get an appointment for later in the day with a doctor I knew nothing about, but at least I hadn't already been turned away by his receptionist.

So I went back to the car, to tell my boy we'd have an hour to wait until the next appointment. He looked a little nervous, and said, "but you can't drive. You got this ticket. You didn't renew the insurance. A policeman came by and you can't drive anywhere." CRAP! So not only did we forget to renew, but the car and insurance are in my husband's name, and he was on the island.

This is when my day turned around. I asked a nearby bank employee who helpfully found me the closest insurance office. I walked a few blocks to that insurance office, and explained my dilemma. I called home to the island but my husband had recently left the house. I phoned my brother, who then drove to the building centre to find my phone-free husband and have him call the insurance office. Then the insurance broker in the city wrangled the ICBC workings with the broker on the island, and between the two of them, they resolved the issue. Except the printer wasn't working, and I was due for that final doctor's appointment.

Off I ran to the doctor. He sat down nonchalantly and looked straight at me. He listened to my whole story. It took me at least a minute to describe my son's situation, but he just ... listened. Then he asked some questions, and he listened some more! Then he made some wonderfully helpful suggestions, and also reassured me that while tetanus is a very serious disease, it isn't very common. I had very little time to thank him for his wonderful supportive and helpful manner, because the insurance office was closing imminently, and without my insurance I would have had to leave the car in that two-hour parking spot overnight. Of course... I'd already been parked there for three hours at that point. So I started running.

Half way to the insurance office, a woman motioned for me to slow down. It was the insurance broker! She smiled, and said she figured I was definitely over the two-hour parking limit, and thought she would just try to find me with the new insurance papers. She handed them to me and I nearly hugged her.

Here's the thing. Vaccines are a wonderful invention. For most people they are, anyway. And it's definitely prudent to do the thing that works for most people. Like you treat your garden in the way that will work for most plants, even though you know you'll lose some along the way. But what if one of those little seedlings came to you and said "hey - I need something slightly different." Maybe you'd call it collateral damage. Or maybe you'd stop and ask it to explain.

Please, doctors, listen to your patients. If we are in your office at all, it's because we respect you and hope your knowledge and experience can help us. But you can't help us if you can't even hear what we're asking. We feel so alone when you shut us up. We feel thrown to the gutter. We feel uncared for. If it takes an extra two minutes of each visit to just listen, please do it. Today I had a really terrible day, and it was saved in the end by people who took a moment to really listen to my problem, and help me find a solution, even when it wasn't the same one that everybody else needed. As doctors, you have the opportunity to change and save lives. Whether or not you do depends partly on how well you listen, and demonstrate compassion.

It turns out even insurance brokers, bylaw officers, and grocers have the ability to make or break someone's day. All of us do. Can we, please?

Sunday, July 9, 2017

Parenting in Community

Last year when my daughter fell and injured her knee, two members of our community, who happened to be passing by and notice her, helped contact us and look after her until I arrived. One of them also took her bike and kept it until we returned from the hospital.

My kids live a gloriously free-range life, and we are often glad for the ways they are parented in community. Just the other day they went busking in town by themselves, and when they got home I asked them how it went. They both reported their successes, how much money they made, and compliments they received. And my son told me about the guy who kindly suggested he should increase his accordion repertoire. He has balked many times at the same advice from me, but hearing it from a stranger had a bigger impact, and now he is happily taking that advice. I've noticed him sitting around practicing some tunes in the past couple of days.

Coming back from busking with some great successes and some great advice from a stranger.

Advice isn't always what I'm hoping to hear, of course. Once when my kids were younger they went to the library - a 2km walk from our home which they did quite regularly at the time - and then phoned me to report that they were not allowed to go home without a parent, because the librarian was worried about them. I spoke to her, and reassured her that they had my permission - then and in future - to hike themselves around the island. I didn't go pick them up, but I was glad for her concern. It's wonderful to know that my children are seen and heard. I've also received a call from a friend, letting me know that my kids were arguing incessantly and disruptively when she met them at the library... once again I was glad to know, and to be able to have a talk with my kids, sort out what was going wrong, and help them resolve it.

It can be difficult, when receiving advice or hearing concerns from community members, to take others' words in stride, and not react defensively. I've been told that my kids rudely entered a house without knocking, and didn't say hello to the rest of the family when they arrived, and my defensive reaction meant the end of a very dear friendship. I wish I had reacted differently. Even though I disagreed about the severity of my kids' infraction, it is my place as a parent to recognize that another community-member's advice is almost always well-intended. The way I take that advice will influence the way my children take advice, themselves, so it's very important that I respond maturely and confidently. Of course it's not always nice to hear negative feedback, so we can be gentle in our suggestions, and gentle in the way we receive them.

Wherever we go, we are a part of the bigger picture. If you see my kids, I am glad you noticed them - even when they're causing problems. If I see some kids (known to me or not) needing help or causing harm, I will absolutely step in if no parents are around. I don't know what their family rules are; I don't know what's expected of them, so I will ask. And if I'm really concerned I'll try to convey that to them. I'll try to be supportive whether I'm worried for their safety or for the pigeons they're tormenting, because I hope that others will do the same for my kids. That's what community does.

As my kids grow older and further out into the world, I am more and more aware of both the risks they face and the help and guidance they receive from others. They are moving out of the circle of my arms and into the wider circle of their community. People trust them and hire them for babysitting, pet-sitting and yard work, and when things go awry, those people support them too. I will never forget the day I accidentally smashed the mirror on the back of the door at the home where I was babysitting - for the second time in two weeks. When the parents came home I was devastated. I cried, and told them I would pay for the mirror. They insisted I take my babysitting fee, they hugged away my tears, and they drove me home without a single word of reprimand, and only support. And they hired me back again.

These are the interactions that make us a part of our community - that remind us we are seen and valued, that our actions matter and that we matter. And in the end the vast web of support and connections our children carry is what makes our communities strong safe places to grow, together.