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I thought long and hard about the blog topic today because really, when you think about the subject of "what would I be doing now, if I could be doing something else" well, that's a complicated question.
There's the thing you could have been doing if you had chosen a completely different path a long, long time ago. That's totally different from what I would like to be doing now if I could do something different. And the answer would be very different if asked, what would I do if I could do anything in the universe. And the answers to all of these change based on where you are in life too as well as, say, if I hit the lottery tomorrow, what would I do instead of what I do now, if money didn't matter.
So I was thinking about what else I would have liked to study if I could study something else. Still be a scientist but studying something else. And I know what the answer is.
I would make it my life's mission to cure multiple sclerosis. If I could quit my job right now and work for free in any lab I wanted, fully funded, I'd find an MS lab and work on that. Because MS bother me. It bothers me that this disease is still so mysterious and unpredictable. And the effects on afflicted people scares me to death.
When I was a postdoc I had a second job at night to supplement my income. I went to work in an assisted living facility taking care of old people. I loved the old folks- loved taking care of them in every way. They were all so appreciative and kind. The job involved everything from bringing them to the dining room, helping to feed people who couldn't hold a utensil, bathing them, getting them undressed and into pajamas, cleaning their behinds, and tucking them in at night. It was quite fulfilling on a personal level. Most of the people were either just old and mentally fine but incontinent, beginning Alzheimers, Parkinson's disease, or suffering from the after effects of a stroke.
There was a separate floor for the advanced Alzheimers patients and I rarely worked on it. Some of these patients were violent. The few times I was asked to help out, I witnessed a few things that I wish I could erase from my memory.
So anyway, there was one patient in the facility who was not that old. In fact, she looked to be maybe only 40 years old. She couldn't speak. She couldn't move her hands with any control. She couldn't eat and was barely able to swallow homogenized food. She was basically a consciousness in a non-functional body. She had MS.
She could not say what she needed or wanted. When she was angry she would grunt as loud as she could which wasn't very loud. My care of her involved cleaning her hair with a dry shampoo and sometimes a sponge bath in her bed, brushing her teeth, feeding her and she often choked on the food. The panicked feeling induced by her choking while I was feeding her was enough to make my heart seize. There were times when she wanted to yell or scream but couldn't. For example, if she didn't like something being done to her, such as if she didn't want her hair brushed or didn't want to be in bed yet. She couldn't say it and there was no way to let us know what she wanted.
She was young and helpless, stuck in a facility where strangers took care of her personal needs, left in a bed or a wheel chair with no one talking to her all day long. It killed me to see how this disease had taken over her body. I wanted a miracle for her. A disease this insidious and devastating must be stopped.
I took care of many people with different diseases and disorders. Nothing impacted me the same as this. Maybe it was her age that bothered me so much.
The other young resident was a girl with down's syndrome. She was so sweet but she managed to get herself kicked out of the facility. Why? Because she would take an entire roll of toilet paper, stuff it into the toilet, hit the flusher, then race back to the safety of her bed, laughing gleefully at the Niagara Falls she created in her bathroom. She thought it was hoot. Unfortunately, the management didn't think so. After the fourth time, the facility told her family she couldn't stay. I took care of old men who would try to pull me into their bed with them (yes, indeed). And I took care of many really cool people who I fell in love with like they were my own grandparents.
But this woman with MS was someone I can never forget. So if I could study something new, and dedicate my life to a cause, it would be this disease.
No definitive cause for MS is known. It's an auto-immune disorder where the body makes antibodies to the myelin sheath protein that covers the axons in the brain and spinal cord. The progression and symptoms vary because the destruction of the myelin will be different for each individual. As for the cause, there are many hypotheses but no solid leads, as far as I have read. It could be environmental. It could be linked to a lack of vitamin D and exposure to the sun. Or maybe it is influenced by diet and hormones. It could be triggered by an infectious disease such as a virus. But there could be some genetics that influence the chance of developing the disease.
Why don't we have more solid answers? Enough people have this disease that surely someone can figure out some link. One reason why I was so intrigued with this story about the use of helminths to treat auto-immune disorders is because it is being tested for MS patients as well.
I know three people with this disease right now, all women. I can't bare the thought that this level of incapacity could happen to someone I love.
Will someone please figure this out?
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I think, you just hit on the worst part of patient care. It's not when a terminal patient passes that is hardest, it's when you don't know the patient. Physicians are granted a limited amount of time with patients, and med student time is even less. Sometimes you just want to talk to them, but you can't because you're zipping by on your next stop in rounds or because you're being herded off the floor by senior faculty.
I've met and got to talk to some amazing people. We can only let them share what they want to, but when they do share it's always something that gives you a bit of a connection. But the ones that have always bugged me were the ones that I didn't even get to exchange cursory pleasantries with. It's almost like they weren't really there. But you know they were there.
Horrible. I also wish there was more done.Thats truly terrible what you experienced. Thanks for sharing.
I find it interesting that all the people with MS you know are women. Is this a trend? Or just coincidence?
I can't imagine how hard it would be if you felt so close to each patient when you have so many and most of them you probably never see again once they leave. But I think in a hospital, more often than not, the person has a close family member with them, right? I mean, they aren't totally alone.
When you are a doctor with your own patients, you'll be able to have that connection. Right now you are helping as many people as possible with the best care possible. I guess it's part of the training to be non-emotional in the face of a lot of dire consequences. I think it is enough to be sincere and warm to let people know you really do care.
In this assisted living facility, I would take care of 20 people in a night - that is getting 20 people fed, washed up, changed into pajamas and attend to their personal cleaning, and then into bed for the night. The cognizant ones knew they had to wait their turn but I always gave each person a lot of attention and time. I knew when they liked to be in bed so I could time it perfectly.
There were some days when they didn't have someone working the other floors and I had to take care of up to 40 people a night. That was why I quit. Too many nights like that.
@alchemystress: I don't think of it as a terrible experience. The experience was profound. I looked at it as a blessing to me to be allowed to take care of this other person. I felt I gained just as much from the interactions with them as I gave to them. Maybe more. I cared for each person as if they were my own mother or father.
Every difficult experience is a chance to learn more about yourself and to practice releasing judgements and false perceptions about people. To see past the disease and the malformed body and to see the real person on the inside. And in doing so, you learn to see yourself in a new light too.
haha - enough new age crap, huh?
MS occurs more than twice as often in women than men. No one really knows why.
Wow that was abunch of touchy feely new age crap :) hehe
Yeah I suppose when I said terrible just terrible to watch someone suffer like that. So still think it was a rough experience but I can totally see how it would make you grow and re-evaluate yourself and place in life so to speak. Its good there are people like you, I honestly don't know if I could handle it. Its so very sad.
The fact MS occurs twice as often in women has got me thinking. There has to be something to it, obviously people have noticed that and looked at it. I need to look thru some literature I think.
Great post, Jade. It kind of makes my idea for this theme day seem trivial.
Great post, Jade. Truly, truly great.
I have a friend who is in the very early stages of MS, and I love her dearly. She knows what will happen to her, and has accepted it like someone who sees a tsunami coming. She knows that whatever she does cannot change what will happen, but is living each day full of love, family and friends.
I will send this to her, not because it is sad, but because it will give her hope to find someone who will care about her during the rough times ahead like you :)
@Brian- what do you mean? What's interesting about the theme type blogging is that you never know how the same topic or idea will be processed by different people. At first I didn't like the theme at all. Then I really asked myself the question and closed my eyes and waited. And then it hit me like a freight train. I've even gone so far as to see if anyone in my area is doing MS research.
I think the theme ideas can be good for creativity and whatever answer it is for each person, it's not trivial. It will be perfect.
@David- I do believe this particular woman was an extreme case. I think it doesn't progress like that in everyone (not so fast). And I would bet (and hope) that the treatments they are giving today have improved since then. I think it is critical to focus thoughts on the positive and not the fears. Break throughs happen and every person is different.
For your friend, she may live to an old age and never need that kind of care. That's what I would tell myself.
Great post Jade!
It is a shame the politics of funding of science make it so hard for someone to just pick a problem and work on it. I guess it makes sense to only fund those who have the tools and expertise, but I do think an awful lot of good scientists are receiving funding for less important research. Perhaps there should be funding for talented scientists wanting to switch areas and attempt an important new line of research? As it stands “too ambition” counts against a proposal, and it is much more likely to be successful if it builds upon a problem that only vaguely relates to anything of human significance.
Thanks- I think I would of had to take another postdoc in the MS field back at the time to get in the game. Definitely I would want to train with an expert.
But say if I did win the lottery and could work on whatever I wanted and not even worry about getting paid? Then I would work on this.
Right now in my life I have too many responsibilities to drop out and pursue something different. So even if the funding were available, I couldn't do it.
Maybe when I retire I'll see if there is a lab that wants an old lady PhD to help with a project.
LOL, because you want to cure a real disease and I want to mess around with fish :P
BTW, we had a comment about this on the Facebook page:
Bri: Fish are cool and they bring many people joy, so I think it is a great cause. If the ick problem were solved, many more people would probably have fish tanks. Hobbies like fish bring people together and gives them something to love together (dads and kids, couples, etc.). The world needs more of that.
That's a great comment- thank you Kristin. I am glad to hear that you are not letting this disease rule your life and are staying in school and pursuing your goals. There will be a cure one day and there will be ways to reduce the effects of already damaged nerves. I personally believe that having and pursuing goals will help you enjoy a much longer healthier life, as you take the focus off your symptoms and on something else. When people give up on life, health usually declines fast.
Did you read that helminth article? It's pretty cool.
I asked Kristin to write a post on our guest blog. She'll be up on the 24th, after Image Goddess goes next week :)