"Suffering the Slings and Arrows of Outrageous Fortune"

I have grumbled and complained about various doctors on this journey but I experienced something unique with Dr. Tinkle that I am struggling to put into words. We felt so fortunate to get access to one of the leading connective tissue disorder experts in the country/world and I had heard that he was a ‘lovely’ man. I can now vouch for his expertise and his compassion.

While he was giving us such bad news, a little, distant part of me felt bad for him. After all, what a horrible way to spend your day – telling nice people they have an incurable condition that will rob them of their function. EDS is horrible – each type is ‘special’ in its own way but they all are (or can be) devasting. To spend your day seeing it, dealing with it, and diagnosing it would be really tough.

I don’t know that I would have the fortitude to be able to give bad news. To help people face ugly truths. I would surely let my compassion run amok and get in the way. The truth is, doctors need to be a bit hard when doing this sort of thing. Why? Because slobbering compassion is really not all that helpful to a person who is suffering.

I can tell you, my child is suffering. Every day. Her life has vanished. She has gone from a child who was an athlete to being unable to stand for more than a few minutes and spending her days in a darkened bedroom. The things she loves doing have been taken away from her. But, if Dr.Tinkle has sat and commiserated with her about how bad life is with EDS, had sat and cried with her, yes, she would have felt heard but it wouldn’t have helped her get better. She really needed someone who knows what they are doing, to take steps to help her get better. And that is exactly what he did. He was honest and caring and gentle and frank, all at the same time.

There are two moments that stick out to me. The first was early in the visit. He turned to Em and asked if she had started yet. When she said no, he sort of nodded, turned to his computer, and said ‘Ok, it will only get worse from here on out.’ (Now, I knew that already and I appreciate his honesty. That statement was really hard for my husband to hear but he needed to hear it.) He glanced at us as he said it but I suspect it was an unpleasant and difficult thing for him to say. However, Dr. Tinkle then proceeded to give us a whole bunch of advice and guidance. From starting PT and OT with HIS people to which sleep positions could be helpful to prescribing pain relief and more. So, his brutal honesty was followed by true help and advice and guidance. Much, much more helpful than hollow compassion.

The second moment, which I will never forget, came at the end of the visit. He headed for the door and stopped to shake Em’s hand. As he did, he got a look on his face that seemed to indicate he wanted to say something… comforting?  I can’t really put it into words – and I don’t actually know what he was thinking – but if I had to put a name on it, I would say he felt pity or sadness for Em, that he really grasped the toll this condition takes on the patient and their families. But, that he knew expressing pity would not help her. So, he shook her hand and walked away, knowing he had done everything he possibly could for her on that day.

That look meant the world to me because it conveyed so much. I cannot express how thankful and blessed I feel to have Dr. Tinkle on our side. He truly is compassion in action. He sees a difficult and ugly condition that inflicts such suffering and faces it head on, with compassion and kindness, with honesty and help. That is a rare and priceless combination.

I hope, at the end of the day, Dr. Tinkle feels gratified in being able to help people who desperately need him. I hope he doesn’t dwell on the suffering, but knows that he tried to alleviate it. I hope he doesn’t think of the pain his patients experience, but instead remembers that he offered them hope. I hope that he doesn’t get caught up in the bad news he gives, but can understand the helping hand he offers is priceless. He is a gem to EDS patients and I am so grateful to him for the compassion and honesty that he gave us.

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