thank you, mr. jones

I do believe we're all connected. I do believe in positive energy. I do believe in the power of prayer. I do believe in putting good out into the world. And I believe in taking care of each other.

~Harvey Fierstein 

I've been “working” in the acute care unit at UMMC this week. And by “working” I mean “following an OT around observing” what our job looks like in acute care. I have thoroughly enjoyed being out of the classroom but I can’t say I've enjoyed being in a hospital. I’ve worked on the neurology floor all week—I’ve seen a variety of stroke patients and because we typically see the same patients each day until they are discharged, I've gotten acquainted with several of them.

I’m going to tell you about one in particular.

Mr. Jones (not really his name) came into the acute care unit about a week and a half ago due to an ischemic stroke which affected his entire right side. He’s about 47 years old and every day when we go into his room to work with him, he’s always so motivated and ready to take on whatever challenge we give him. “I’ll do whatever it takes to get better”, is something I’ve heard him say a dozen times this week.

Our therapy sessions consist of transitions (supine to sit—sit to stand) and forced use of his affected extremities (that means forcing him to use his weak side). Mr. Jones cannot lift his right arm at all. It hangs like dead weight beside him and because he’s also lost sensation, he can’t tell where his arm is in comparison with the rest of his body—meaning, he could be sitting on his wrist and not even know it—which could easily lead to a broken wrist, fingers, etc. He cannot hold a fork in his right hand, he cannot brush his teeth with his right hand, getting dressed is almost impossible because not only can he not use his right arm, he can’t use his right anything. He can’t stand without assistance, he can’t walk by himself, he can’t go the bathroom by himself—and even if that were possible, he couldn't wipe himself.

(The good news is that with lots of therapy, Mr. Jones will be able to regain a lot of independence and has the potential to return to a high functioning level which means that his quality of life will eventually be very close to where it was before.)

Today when we walked in Mr. Jones’ room for his therapy session, he was curled up under the covers in the bed. The blinds were closed and the room was dark. When we asked him if he was ready for therapy, he replied “Not today. Maybe tomorrow”. This was unusual because he’s been so motivated this week. We asked him if he was in pain and he said no. We went through a series of questions to try and figure out what was wrong and finally the truth came out. Mr. Jones didn’t want to participate in therapy today because the gravity of his situation had sunk in and become real.

Mr. Jones— this very funny, smart, strong. and brave man-- will never experience life the way he did before his stroke last week. His life will never be the same. He will no longer be able dress himself independently. He will no longer be able to drive himself to the store. He will no longer be able to work on his car or cut his grass. Everything about his life has drastically changed. It feels as if every time he looks in the mirror he’s living a nightmare. His face looks different. His smile is different. His entire world is now a completely different place.

And when the OT explained to Mr. Jones that these feelings of depression and frustration were normal and that we understood how incomprehensible this kind of transition was—Mr. Jones broke down. He pulled the covers up over his head and sobbed. And at the time, I didn't let it affect me because (unfortunately or not) I’ve learned to compartmentalize my feelings, yet tonight when I sat down to write notes from the day, it hit me like a brick and I could not stop the tears.

Not only am I grieving for this man who will never return to “normal”…I’m grieving because this man has no support. In order to discharge someone from the acute care to inpatient therapy, there must be a person—family or friend—who will volunteer to care for the patient. And the reason Mr. Jones isn't in inpatient therapy yet is because no one will step up to claim him. No one will say, “yes, I’ll learn to take care of him because he can’t live on his own”. No one has come forth to say that they will help this man learn to live with this disability and so as a result, Mr. Jones lies in a hospital bed all day and night long waiting to see what his fate will be.

If no one steps up to claim him, he’ll fall through the cracks—meaning that he will probably be placed in a nursing home and end up contracted and unable to ever move on his own because without therapy, he will never regain the use of his right arm and leg.

So the real issue here is the support system. With a support system, Mr. Jones could lead a fairly decent, functional life. He can re-learn to walk and he can re-learn to dress himself and eventually he may even be able to drive! But without a support system, Mr. Jones will never be able to walk independently; he’ll never be able to feed himself or dress himself much less use the bathroom by himself.

And he’s so young! He potentially has another 30-40 years to live! But now he’ll be living with no purpose and no passion. This is one of the reasons suicide is so high among stroke patients. Their quality of life is drastically different than before.

So as I sit here tonight reflecting on my day and week in the acute care unit—my heart goes out to Mr. Jones and all the other Mr. Jones’ that exist in situations like this.

People, take care of your family—whether you like them or not. It truly does take a village to keep each other going; Take care of your friends; Remind yourself that in a blink of an eye, this could be you; Remind yourself not to take one single moment for granted—because the people that you love are going to experience disabilities and impairments and eventually death.

Mr. Jones, this goes out to you. Thank you for reminding me why I want to be a therapist. Thank you for reminding me not to take one single second for granted. Thank you for reminding me that my good health and ability to walk, sit, and run are denied to many. Thank you for reminding me that the human spirit and body are resilient beyond belief. Most of all, thank you for allowing me to re-learn this lesson: To hold tight to those you love—because tomorrow, all of that could change.