I’m a WASP (White Anglo Saxon Protestant) and I was raised in the Midwest. When I moved to Orlando for college a few decades ago, I was astonished at how much unsolicited touching occurred. I often had to explain to people that it wasn’t that I didn’t like them, it was just that they were in my personal bubble without invitation and it freaked me out. As an introvert, I didn’t usually say much in the moment, just probably had the weirdest look on my face and unnatural stiffness as I tolerated the unexpected touching.
Sorry to all the well meaning people who just wanted to give me a hug! Really, I’m sorry. I didn’t get it and it’s taken me some time to adjust.
I think I’d adjusted a bit in the few decades I was in Orlando for college and after law school to the hugging and other cultural differences involving personal touch and then I was diagnosed with Stage IV Metastatic Breast Cancer (MBC) in 2017.
All at once, the majority of the human touch I received caused pain. From the phlebotomists who stuck me to draw blood regularly to the surgeons who cut me open for a variety of reasons to the nurses who would access my port with a gigantic needle to give me medication to the physical therapists who would push me through pain to strengthen my muscles, the medical treatment meant my body was touched over and over and over, causing pain over and over and over. Don’t get me wrong, I appreciate the medical treatment that is keeping me alive, keeping my bones strong, keeping my pain in check, keeping me active and connected with my children, it was just a huge adjustment and has changed my perception of human touch irrevocably.
This isn’t an indictment of the healthcare workers who had to do their jobs. Most did their best to be gentle, most tried very hard to adjust while watching my reactions, and I know that most of it was just necessary. I’ve learned that I have to give feedback, that I have to speak up when something isn’t feeling good, that they don’t read my body language well all the time and my high pain tolerance often gives people the wrong impression.
Yet …
- I will never forget the ex-Marine with biceps the size of my thighs who injected me with radiation for the 3.5 hour MRI of my back in preparation for surgery, and was so gentle and kind and nearly cried with me when I was writhing in pain and trying so hard to not freak out about being in a closed tube that long.
- I will never forget the phlebotomist in the hospital who had to stick me in my hand every 2-3 hours and when I cried and told him to stop, refused to touch me any longer until they’d accessed my port, which I’d been asking to happen for two (2) days.
- I will never forget the paramedic doing a rotation in the emergency room who was training and his access of my port was literally the second time he’d ever done it and I didn’t feel a thing.
- I will never forget the nurse who, at my very first chemo and the very first time my port had ever been accessed, who declared that she’d never had an issue in more than 20 years and missed the target in the middle of the circle, causing intense pain since I’d had surgery to insert the port a mere two (2) days earlier.
- I will never forget the nurse who insisted on accessing the vein in my hand in preparation for surgery, did something I couldn’t see and I got to see my blood spurt out and spill on the floor.
- I will never forget the anesthesiologist who refused to access my port when the IV in my arm failed right before a surgery and accessed a vein in my hand while I was shouting, “I don’t consent, I don’t consent,” and told the nurse anesthetist to put me under immediately. I woke up after that surgery with my port accessed, both veins in the crook of my elbows accessed (including my left arm that sported a tag warning that they shouldn’t) and my right hand. I made sure to report his violation immediately and nothing happened.
- I will never forget the people who were gentle, even while they were hurting me, and I will never forget the roughness of the more “experienced” nurses who told me I couldn’t possibly feel anything when I was, again, writhing in pain. By far, the newer nurses and the male nurses were the most kind and the most gentle. These touches stay with me and the memory of those touches are recorded in the very cells of my body.
What I do know now, is that I more than appreciate the human touches from people who are not doing something medical to my body. I appreciate more the hugs that were commonplace here in Miami before the pandemic, the air or real kisses on the cheek from men and women alike, the invasions of my personal bubble that communicate kindness and love and happiness that I’m me. I’m not always comfortable in those embraces, but I’ve learned that humans need human touch, humans need to know that they are loved and accepted through touch, and this lesson will stay with me, recorded in my very cells, irrevocably.
No Half Measures 
I related to so many things in this post. Thank you
LikeLiked by 2 people
I was taught at a top, teaching hospital to get eye level with a patient, and reach out and touch them. I always get eye level, introduce myself, ask how they prefer to be addressed (nickname, Mr/Mrs, etc), and what goal we can accomplish in our time together. I always do this as I reach out and touch their arm, shoulder, etc. It seems to really help. I work in Cardiothoracic ICU, and try to always remember the importance of human touch.
Great article from a patient perspective!
LikeLiked by 1 person
Yes, the importance of gentle human touch in the medical setting is soooooo important. I have to say, the vast majority of the medical professionals I’ve dealt with want to do the right thing and may know the right thing. I blame the profit driven healthcare system for making it harder and harder to have those human connections, frankly. It’s disgusting to me, as a professional patient. :). Thank you for reading and commenting!
LikeLike
This is so valuable on its various levels, Abigail. But what the hell is the issue with the port? Why were these trained people so loath to use it when it was there for precisely the purpose they were engaged in?
I’m thinking that whenever feasible, medical personnel should have to undergo the procedures they will soon perform on patients. Obviously, there are limits (eg, heart transplant surgeons!), but after I had a total knee replacement 6 years ago, I had to climb some stairs before discharge. I recall the physical therapist telling me he’d worked with two recovering knee replacement surgeons earlier, and they’d both said they’d had no idea how much pain they’d inflicted on their patients. Maybe there is, or could be, some virtual reality method that would demonstrate the pain and encourage gentler patient care.
As to the return of hugs—amen to that wish! May it be feasible—safely—sooner than we anticipate!
LikeLiked by 3 people
I’ve told many of my doctors the same thing!! They don’t know what the aftermath is and they should be a lot more careful about it. I’ve learned over and over that nurses certified to access ports are not common in non chemo areas. The operating room happens to fall in that category. I’ve also learned that the surgeon is one who has to require a port certified nurse. I now know to ask for that. It’s irritating and beyond frustrating to learn these things after the fact but I try to educate everyone as a result. Thank you for always reading and posting such thoughtful comments. Love and light to you. ❤️
LikeLiked by 1 person
The same to you, dear friend. I carry you with me in my heart.💕
LikeLiked by 1 person
Our memories are powerful, I believe even more so when the senses are involved. The gentle touch memories evoke a lot of compassion. The painful ones still sting with hurt. I also have a high pain tolerance, but I’ve gotten to the point where I let them know immediately if poking and prodding with needles hurts.
LikeLiked by 2 people
I’ve had to adjust how often I speak up as well. Feedback is important!
LikeLiked by 2 people
I cannot believe the invalidation you received. And you’re an attorney!! Reform, reform, reform…
LikeLiked by 3 people
I’ve also been astonished. I’ve responded to every survey and the department of health website for filing complaints is bookmarked on my computer. I think most patients just put up with it and don’t complain. Well I do and I don’t see whether it’s actually changed anything. It’s sad and demoralizing.
LikeLiked by 2 people
Perfectly written. I don’t even know what to say. Except one time I disconnected myself in pre-surgery bc they wouldn’t let me talk to the doctor or call my dad before sedating me. I went to a waiting room with my behind hanging out and called my dad. When I got back, they had pushed my surgery 4 hours, and my doctor was there and they said he was upset. I said I bet he was. You lost his patient! Thankfully my doctor was just as angry as I was, and yelled at them to get the rescue medicine I needed for when I woke up and have it ready on the floor and not available to be called for like they were telling me. I miss him. I’ve been put to sleep against my will before. And after my escape from preop, they put me in a bed to add an alarm if I got out of it. That may also have something to do with the night before when they wouldn’t respond to important requests and I went down to the first floor with my cardiac monitor and ask for an administrator because that’s the only way you can get anything done. I got in trouble, and I was put on lockdown, but my doctor did agree privately that they would’ve done the same thing. And I understood their need to protect the hospital. My doctor is the medical director of his department at that hospital. I apologized for causing a ruckus, but he also moved me after two days up to his floor in oncology and gave me the big room over the helicopter pad. Didn’t have another problem. That second floor is dangerous and scary. I don’t go to that hospital anymore. I go to my other doctor’s hospital. It’s smaller so there’s more one on one communication and care. And as long as I have one of the two of them on my case, I feel safer.
Two things I can tell you I remember like yours, is the one time when the IV came out and she kept pushing saline to make sure. I just saw my arm continue to grow to double the size it should be, and to this day there is a bruise there. That was 2015. I wanted to smack that woman. She had already asked if it hurt and I had already said yes, which like you, it’s confusing to them because I have a high pain tolerance. So when I said it hurt, I expected her to stop. Nope. 🤦🏽♀️
The other time was when I was admitted and was given pain medicine at 6 PM. At 8 AM, I asked for another one, and I was told I couldn’t have it bc I had one at 6 AM. I said no I had one at 6 PM, but I hadn’t had any that day. The nurse argued with me, and to my surprise, the doctor said he was there last night when I gave it to me, so the computer is wrong and they need to fix it. She brought my medicine. I was floored that a doctor would remember, unless he didn’t and was just pretending to in order to help me out.
You are definitely right. Those are some moments you don’t forget! Madison had a nurse fight with her when she was nine years old acting like Madison was being mean by complaining that the shot hurt. I am not even kidding. What is wrong with people!?
LikeLiked by 2 people
You have had so many awful life threatening situations and my heart hurts for you. I wish our medical system would allow nurses and other key medical personnel the time and space to be compassionate. I know that most if not all would prefer that. Love to you, my friend. ❤️
LikeLiked by 2 people
Wish you all the best on your path to recovery and kudos to your memory for recollecting in such extensive details. Thanks and much appreciated for sharing
LikeLiked by 2 people
Thank you for sharing your story! As someone who has spent a lot of time hospitalized in the ICU over the last year I understand the frustration of medical professionals not listening to you and “knocking you out” so you can’t speak. It feels like there’s 2 tyoes of medical professionals: those that really care about their patients and those that view their patients as a “job”-no caring emotion at all. Keep sharing your story and fighting for what’s right for you as a patient 😊🙂
LikeLiked by 2 people
Thank you for reading and commenting! Were you hospitalized for COVID?
LikeLiked by 1 person
No thankfully I haven’t contracted COVID-19. I was in the hospital twice during this pandemic for my hereditary angioedema. I swell in my face, tongue, and throat and often require intubation. Stay safe!
LikeLiked by 1 person
I’m so sorry. You too!! ❤️
LikeLiked by 2 people