I was talking to a man who quite frankly looked identical to Albert Einstein …
We were both leaned back in plush leather recliners that had been kicked out, our shoes were off, and our socked feet moved back and forth as we talked. Einstein was a stranger before; but we would leave one another as friends, exchanging words of thanks for passing the time with good conversation before goodbyes. More than likely, we would not see each other again.
This was how my June hospital infusion looked, though in fairness my infusion a few days ago in December also appeared the same.
I’ve written before how it has come to a point where I forget that I even have multiple sclerosis. I’m only reminded two times a year when I see my neurologist for routine check-ups … or another one time a year when I get MRIs to compare past MRI results to determine the progression of my MS … or another two times a year when I go to the hospital for my disease-modifying treatments that come in the form of infusions … or when someone reminds me and asks me about my MS journey.
At most, I’m reminded that I have multiple sclerosis about ten times a year.
This takes me to my most recent updates since I’ve last written — though I use the word ‘recent’ loosely as my last post was nearly one year ago. And that is a victory — the passage of time over the course of a year where I have not needed to write and where my life has seemingly moved forward as any normal life would. For instance, in March, my yearly MRI showed no new lesions so my MS is stable. For now, my disease-modifying infusion treatment called Ocrevus seems to be working wonderfully for me, and this takes me back to my infusions ….
My first in 2023 was a summer infusion in June where, despite the heat outside, the hospital room was cold (as all hospital rooms are, I suppose) so I had a blanket over my lap, my shoes were on the floor beside me, and my socked were feet stretched out …
and Albert Einstein was near me was also shoeless and wearing socks.
There was another man in the room too — I’m sure he also had his socked feet out as well, though I cannot remember, but what I do remember is his red hair and the conversation we had as he, Einstein, and then I swapped stories of the most personal kind …
I had been typing on my computer when Red Head and Einstein’s mumbled conversation grew louder. I began to gather that the two knew each other, though not necessarily in the world outside our hospital room door, but that they knew each other through infusions repeatedly matched on the same days — They had become what is known as infusion buddies.
“Sorry — can’t come,” Red Head said with a smile of earnestness. “I’m confined to my 12-by-12-foot space right now.”
“Yep,” Einstein agreed. “Have you seen the commercial with the woman who has a toilet as her RV seat? You know someone with the disease came up with that idea!”
By now the conversation had perked my interest — The pair had mentioned being stuck in bathrooms (which spoke volumes to me after struggling with primary dysmenorrhea nearly all my life) and traveling in an RV (which played with my emotions as my husband and I pour our souls into getting our finicky antique restored). Essentially, what two better ways were there for me to find my way into their conversation?
So I asked what they had … as in what brought them into the infusion room with me, what illnesses were they battling, and what was the source of their stories.
Red Head had Crohn’s disease — He was diagnosed at the age of 17 when he went from over 200 pounds … to 135 … in merely two weeks without any idea as to why.
“In school, I had to pack extra clothes in case there was an accident. To know you will have digestion problems at 17 was mortifying,” he confessed. He wasn’t looking directly at me anymore but at a distant point in his past that made his eyes lightly glaze over. Still, I maintained eye contact — This is one way respect is shown in infusion rooms. There is no awkwardness and no embarrassment over what is shared or seen. We are all here, through various diagnosises and various health journeys. There is no judgement.
“I’m sorry you went through that,” Einstein said before I could. Compassion and empathy is understood most here. It is hard to explain how these feelings fare with others who have not had serious health struggles before — Sometimes, their words instead feel as pity; other times, as sorrow. In infusion rooms though, we do not pity one another, and we do not have sorrow.
We are all strong as our infusions drip hope into our bodies. Now is not a time for weakness.
But Red Head and Einstein’s talk jumped to comparing what drinks and foods they could consume … or I should say could not consume.
I gathered why Einstein was with us then — He was diagnosed with colitis at the age of 30. He had been on vacation — I believe it was in France. Suddenly, he couldn’t feel his legs. Five IV bags later, he had a diagnosis as to why.
“I can’t drink more than a half a gallon of water,” Red Head said, and I was floored. While there is no comparing of diseases, multiple sclerosis brings with it urinary tract problems, making me drink a minimum of one gallon of water a day — and I’m lucky to avoid issues even then. No exaggeration, but I would probably die if I could only drink eight cups of water a day. The thought of how that would wreak havoc on my health gave me chills …
“What about ice cream? Milk?” Einstein questioned before interrupting himself. “No, you certainly cannot have milk.”
“Nope — No dairy,” Red Head agreed before pondering aloud, “but I can have cheese for whatever reason …”
“No food with stones.” Einstein shook his head with a tone that made me think he regretted past pitted foods, too.
“Yep, no cucumber,” Red Head answered back.
“No,” Einstein agreed. “Lettuce, cauliflower — “
“Nope, cannot do that,” Red Head responded.
“I wouldn’t wish this on an enemy,” Einstein stated, turning to me.
“No, you wouldn’t,” Red Head followed up. “I work with a lot of females — They sometimes talk about cramps and blood. They always apologize when I step into the room as other guys are turning away — I join in on their discussions.”
“I used to think about putting down for my occupation: ‘patient.’ I’ve been in emergency rooms more times than he knows,” and Albert gave a nod Red Head’s before both chuckled.
“Oh me too!” Red Head said before they laughed again.
“I have a family member with heart problems and celiac disease now — I’ve gone down in the family death pool!”
I couldn’t help but chuckle too, which may be why Einstein felt compelled to give me advice. Or maybe it is because I am younger — Nearly every time I’ve had an infusion, I am the youngest person in the room. (Off the top of my head, I can only think of one or two who were younger.) Therefore, I think most people getting treatments believe I’m starting my infusion process and therefore health journey, in which case dispensing wisdom is needed. They don’t realize I’ve been walking hand-in-hand with a multiple sclerosis diagnosis for eleven years.
“You have to have a positive mindset but also be realistic.
“There are times you forgot you have the disease — You tell people who are important your limitations and priorities, and you try to do the best you can.”
This is a great lesson I have learned with MS too as I bought two boxes of donuts to celebrate the opportunity to have an infusion that day, which is to say I focus on the positives because there is power in positivity. One of the boxes was for my husband and I so I joyously munched a donut in the car before entering the hospital …
The other was an assortment for the nurses so I handed that box over before the other patients entered …
I did not share all of this with Einstein though because my red-headed friend had already fallen asleep and within the next minutes, all three of us were napping like children.
In the end, that June infusion went well though, as infusions do for me now; and as I said at the start of this post, when our drips were done, Einstein, Red Head, and I separated with kind words and waves. They will return on different days due to having different treatments that require different increments between days. I may never know how they are now …
Six months later, I was back in the same infusion room with the same nurses in the same infusion chair. I even had the same blanket tucked around my lap and was again stretched out and shoeless in comfy socks …
I’ve grown to enjoy my infusions — It’s a time that focuses on calmness and a time I can dedicate to myself.
It’s also a time I can choose to make infusion friends …
As I was on my computer, two women entered — one, in a wheelchair; the other, pushing the wheelchair. Through talks with our nurses, I learned they were sisters; however, what I was told later was most interesting …
The woman in the wheelchair, whom I will call Sylvia, was diagnosed with multiple sclerosis five years ago … and she is 72. Sylvia was the first person I had meet who had an MS discovery later in life — Most often, MS is diagnosed between the ages of 20 and 40.
“I about fell out of my chair.” Sylvia admitted to me her reaction when her doctor finally identified the cause of her health problems. She had been having tremendous pain in her foot, and after seeing doctor after doctor and going through multiple foot surgeries, she finally had a different answer — Her problem was an autoimmune disease. “To think in all that time no one did a blood test or thought anything different when all along I had MS … ” and her voice trailed off.
I’ve learned this too — Multiple sclerosis is more often than not misdiagnosed due to the symptoms being sporadic and vast and, therefore, mimicking other health issues.
“Did the foot pain go away?” I asked.
“No” and she shook her head. “It never did.”
From here, our conversation was easy — I learned she has progressive multiple sclerosis. (I have relapsing-remitting, which is characterized by relapses — or attacks — of new symptoms then remissions. Most people with MS that I have met have this form and that’s because, according to the National Multiple Sclerosis Society, 85% of people begin their MS diagnosis with relapsing-remitting; however, when the disease progresses, it can change to the progressive form. This means fewer attacks but a gradual move to disability.)
Sylvia then opened up about her wheelchair as she confessed her clumsiness getting out of an MRI machine, which caused her to fall. ”But while I sit here, I’m losing muscle mass,” she said. “I keep pushing back the date I’ll be able to walk — First I said, ‘November for Thanksgiving’ then I said, ‘December for Christmas’, and now here we are two days after Christmas and I’m still in my wheelchair.”
I did not tell Sylvia, but being wheelchair bound is my biggest fear when it comes to multiple sclerosis; and while I knew Sylvia was not confined due to MS, it still rattled me because many with MS do need wheelchairs. Yet, when Sylvia spoke, something in her words made me realize a different thought — There are people in wheelchairs who simply lose muscle mass … and that prevents them from not walking again. For instance, multiple sclerosis can make people feel off-balance … which can cause falls … and it is the fall itself that brings the wheelchair — not the MS. Quite possibly it is the hard work after that would determine remaining in the wheelchair or not. This is when two sayings entered my mind — “If there is a will, there is a way” and “Mind over matter.”
“I’m going to get out of this chair.” Sylvia’s conviction interrupted my thoughts.
I told her the truth — Of course she would. “When the desire is there, you can make it happen,” I encouraged her, and she tossed a smile my way.
“Oh, the desire is there alright,” she told me.
As we talked, Sylvia’s sister occasionally added tiny comments — the way sisters interject into a conversation when facts are not right and there is an urge to correct errors.
“That’s when you started taking Ocrevus.” Sylvia’s sister and Sylvia were having a small debate on which month a family member graduated from university … which pieced together the start of Sylvia’s infusions … which also meant this was Sylvia’s second infusion.
Here’s where our meeting becomes more exceptional — Not only did we have matching diseases, but Sylvia was having an Ocrevus infusion too. So you know, meeting someone with the same disease in the same infusion room is uncommon, but meeting someone who is on the same treatment is rare.
Sylvia asked about my treatments before Ocrevus and how Ocrevus worked for me. (This seat was odd as I normally listen to others or ask them questions … but they never ask me. People feel most comfortable talking about themselves and I was born curious, so it is atypical of me to share my own experiences and stories. The only exception can be found here in what may be my online diary.) So I shared my three-sentence treatment story: I was on Copaxone first; then Aubagio. Now I’m on Ocrevus, and so far the treatment has done wonders. I have not had any new lesions since being on Ocrevus, and the drug has made my MS stable.
She seemed as happy as I felt to hear the news and explained she has two cousins with MS. (By the way, MS is not genetic so this is odd.) One cousin is currently taking Aubagio so Sylvia was interested in my experience with this drug. I went over how my MS continued to progress and how I had hair loss. It was around here Sylvia asked if I was ever exhausted on Aubagio.
“My cousin gets so tired, she has to take naps all the time and throughout the day,” she told me.
It is odd what the brain remembers and what it does not — and this is what I told Sylvia because I had forgotten about my sheer and utter exhaustion; and, until Sylvia mentioned it, I had not pieced together that possibly my exhaustion was more due to Aubagio than MS …
“I would move my plate of food to the side — truly, in the middle of eating dinner — and take a nap … right on the dining room table,” I told her. “I would be so exhausted that I would have to stop walking and lie down — right on the floor — to sleep. I remember one time I even fell asleep on steps at my parents’ house.”
Again, we shared amazement at what the other had uncovered, but on to her other cousin …
Cousin Two lives in Germany and has been on Ocrevus for years — much longer than the drug was approved by the Food and Drug Administration in America. According to Sylvia, there is no FDA in Germany so people could take Ocrevus sooner — Though I do not know the validity of this, I found Ocrevus was approved by the FDA almost seven years ago in March 2017. I had my first infusion almost two years later in May 2019, and I remember a significant amount of trepidation starting it because of this.
“Do you mind unhooking me so that I may use the restroom, please?” Sylvia asked one of our nurses when our conversation had paused for several seconds.
It was here my mind bounced back to where I was.
Infusions are odd in this way — Despite talking about it, I forget that I am having an infusion, in an infusion room, in a hospital, and that I am sharing stories of the most personal kind with a stranger in my socks.
Sylvia left for the restroom then returned short time afterwards; but the Benadryl and slow drip of time took its toll so that she soon drifted to sleep. She had come in an hour or two after me so my infusion on this December day was done without concerns, beyond a hiccup with my blood pressure. (It continues to fall to an extremely low point — Normally the nurses can rouse me or request me drink water, and it gets back to a safe level; however, this time, it continued to drop so I was treated to snacks.)
“You’re all set,” the nurse said to me as she wrapped my arm where the infusion needle had been. “Have a happy New Year!”
I smiled and bid my nurses a happy New Year too, then turned to Sylvia, hoping she would have awaken so that I could say goodbye. She did not stir.
“Bye,” I whispered to Sylvia’s sister. “Please thank your sister for me” and I gave a peaceful, silent wave so as not to disturb.
“SLYVIA!” her sister yelled and made a gesture as if to smack her. Though her hand never made contact, Sylvia gave a little jump before opening her eyes. “She’s leaving,” her sister said softly so I gave another wave.
“Thank you,” Sylvia said in the same sincerity Einstein shared with Red Head months before.
“You’re welcome,” I told her back. “I hope we become infusion friends and I see you again, except — ” and I paused, “next time, you won’t be in a wheelchair.”
The smile Sylvia showed is the same type of smile I carried as I left to meet my husband at an amazing Southern restaurant known for its fried catfish, mac-and-cheese, collard greens, and cornbread. A celebration for my sixth year of Ocrevus infusions was in order …
Once Andy and I got home with full bellies, I cuddled each of our three children …
and, to be completely honest, there are many desires, goals, and plans I have for 2024 …
Yet, in that moment and in that day after my MS infusion, all I merely wanted was to have more healthy days with our little family of five.
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