As written during my treatment earlier today -
As I sit here, battling my disease with my monthly infusion, hoping the next 4 hours today and 5 hours tomorrow will limit any further damage, I look around the room at the other MS patients knowing that we each have our own story. Ailments that we are living with, hopes, fears, date of diagnosis, single, married, parent, grandparent; truly from all walks of life...
He looks like he is only 19 or 20. Tall and athletic looking, he comes in each month with his Mom on one side and a white cane to help him walk on the other. MS has severely limited his vision, left him nearly blind. They are hopeful the medicine will restore some of his vision. Just a few years ago, his height and athletic skill brought cheers from classmates, friends, family and teammates on his high school basketball team. The cheers have faded and he casually mentions that he wishes he wasn’t so tall, there are no winning baskets to score now, only obstacles to avoid walking into. His Mom is always by his side, helping, talking to others, asking questions, making sure she is doing all she can for her son - doing what Mom’s do. But when the nurses ask if there has been any improvement from the last month, I sense the heartbreak in her response back to them. Angela and I are plagued by guilt if Vincent or Gianna are sick and coughing through the night – it’s a sense of helplessness – but their coughs eventually go away, MS does not.
She talks about her kids a lot. How they help Mom out, making sure she is out the door on time for her monthly treatment. She was diagnosed at the hospital when her first child was born. Her parents, brothers and sisters, friends – they all came to visit to celebrate the birth of her newborn. She made the choice with her husband not to tell them then, didn’t tell them for about a year. She didn’t want her family to view their baby as linked to her disease. Like one caused the other. She had symptoms for years before giving birth but her fear was that her family wouldn’t understand. As she tells the story, the hesitation in her voice, the facial gestures and nervous laughter - I get the feeling she is worried they still don’t understand.
The Old Guy
I wonder how long they have been married for. She brings crosswords to help the time go by. They are both probably in their 60s. (He reminds me of this guy I used to intern with. Older man, a bit overweight. Whenever you ask him how he was doing he’d reply “Pretty good for an old fat man!”) The man hooked up to the IV is older but not overweight – in fact, I hear his wife pester him in front of the nurse about needing to eat more. Eating isn’t high on his priority list during his week of treatment. I understand this. Sometimes you are hungry, sometimes not. Sometimes all you want is gummy bears to eat, other times it is a chocolate bar. Or, the thought of eating anything makes you cringe. Last month, I could not stomach the thought of anything other than a cheeseburger. Why? Who knows, but Angela went out and got me a cheeseburger and it hit the spot. No fries, no sides, just a cheeseburger. Other months it has been pancakes. Who knows what this month will bring? So it’s not his weight that stirs the memories, it’s his humor. Each morning the nurses ask him how he is doing and he responds with a smile and chuckle “Pretty good for an old guy with MS!”
He says he used to teach. Not sure what his area of expertise was but I know he was a college professor. First time I saw him, he reminded me a lot of my Statistics professor in graduate school – Dr. Xu, not because of his ethnicity but his demeanor. Engaging, very professorial. Wry humor but you get the feeling that if you attempted to make a pop culture joke, it would go right over his head. This man is too busy solving for X to watch any reality television. The nurse interrupts us and lets the professor know that he will have a quarterly check-up during this month’s infusion. I see the look on his face and I know it well. He silently asks if she will show him the way because he doesn’t want to get lost. The neurologists offices are just down the hall, make one right and you are there. The nurse says she will be back in a few minutes to take him and the moment she leaves he quickly explains to me that normally his wife is here but she was only able to drop him off this month. He doesn’t need to elaborate this point, I understand. The vertigo can be awful. The memory lapses. Where am I? How do I get back? I have stories of date nights where I’ve had to call Angela to remind me how to get back to the table after using the restroom and yes, this was before consuming any “beverages” :). It’s embarrassing but it’s my reality. And my situation pales in comparison to our professor. He doesn’t drive and rarely is out alone. When he leaves for his appointment, he smiles and says “Wish me luck” and I know he wasn’t talking about his quarterly check-up.
28 Days Later
The statistics may tell a story of who is most likely to get MS but each month during my treatment I see old, young, black, white, men and women – MS does not discriminate.
My time is up, its time to head home for the day. Half way done! I'll thank the nurses for their help, say my goodbyes and look forward to Wednesday at ~12:30 p.m. when I'll have a 28 day break until the next time.