All kinds of questions arise when you receive a diagnosis of Multiple Sclerosis. Most of the answers medical professionals give you at the time just create more questions. The one question they do have an answer to, and the one that is the most certain, is “Will I need help?” But they’re MDs and not mystics so they can’t say anything more definite than “Yes.” As with all other aspects of the condition, ‘yes’ is equivocal. So is ‘help’. More than that they can’t say– one person’s help is another person’s hinderance. Uncertainty is the name of the game. So are the pained, puzzled looks people give you when they learn of your affliction. That look is the physical manifestation of what you feel inside. They just don’t know what to say, and neither do you. You can only help them ponder the uncertainty.
It’s hard to ponder a future where all the expected outcomes are uncertain– and unpleasant. Nobody wants to go there, least of all you. So everyone important you ask puts on their best brave face, intones something about the best possible narrative to live with, and you try to get on with your life. As you confront the scourges MS brings, your own response (normal or otherwise) will be the only one that really matters.
Mine is still “pride goeth before the fall.”
The first time I breeched the ‘normal response’ range was also the first significant time when observers tried to ‘help’ me avert the fall but injured my pride. I was at my then fifth grade son’s end-of-year camp week. The chaperones and kids were taking a short trek through the woods to the ‘talking circle’. The afternoon sun was waning and the filtered light in the forest was beginning to fade. The path was uneven and hard for me to judge in the dimming light. I stumbled visibly more than once; my cane couldn’t help. Most of the parents knew something of my MS-induced condition (it’s hard to hide when you walk with a cane), but scarce acknowledged what was obvious, as I preferred. All at once, it seemed, everyone was watching and uncomfortably aware.
As I slowed down, the kids brushed by initially, until one of their mothers leapt to my assistance.
“Let me help you,” was the supplication proffered.
“Thank you. I thought this would be easier,” was my shaky reply as I stepped off the uneven path to let others pass by.
Arriving at the circle a bit tardy but now arm in arm with one of the mothers, all eyes burned into me with that pained and puzzled look. The game was up. I had nothing to fall back on. For the rest of the week, I was the cripple who shouldn’t be doing much.
“Will you be alright with this activity?” was the qualifying query du jure put to me by all instructors, in increasingly uncomfortable ways, before all events. I had become a question; I was someone who needed ‘help’.
‘Help’ was something other people needed. “I’m fine” worked really well until other people began to notice and started to ‘help’ me, asking directly or not. There goes my independent spirit – a lifetime to cultivate, a week to lose.
The wounds were largely self-inflicted, and I got over that incident, but the collateral damage was done and would continue. In the remainder of the school year, after word had spread, I was going to face a different kind of ‘help’ from well-meaning sources. Sometimes, it wasn’t as helpful as well-meant. It could easily push a hot button on my pet-peeve o’meter.
I began to particularly dread unsolicited advice.
“Have you tried taking mass quantities of Vitamin D?” was one of the parents hallway query. “I’ve got fibromyalgia. I hurt all the time. Sometimes I can barely crawl out of bed. It’s a neurologic disorder that’s similar to MS. My Naturopath recommended taking an infusion of 20-30,000 iu’s once a week. I feel great now. It gave me back my life. You should try it.”
“Thank you, I’ll ask my neurologist,” was my demurring response.
His reply was “there have been studies about mass vitamin injections to treat MS, but nothing at all indicative that anything beyond a normal dose works. I wouldn’t go there without good data. Might do more harm than good, and not likely to do as much good as you imagine it does. Stay away from miracle cures is my best advice.”
So now I had two new problems, maybe three: with ‘helpful’ advice. First, she was a valuable volunteer in my weekly noon-time writing club initiative at school. Second, rejecting her in a way that came off as ‘a personal slam’ was bound to have repercussions. Third, I liked her, though we were not close friends and probably never would be. We were different people and now, it was confirmed, with known different philosophies.
In a way, she was initially helpful offering her medical ‘advice’. It was an opportunity to confirm to myself the people I sought out for advice were there for a reason. The credentials of my sources, real and imagined, are everything to me when I have to sort out irresolute questions. I’m not a rudderless vessel. I steer the path presented, full consequences ahead. I sail the outcome seas into what will become my future– successful and otherwise.
So I took the course of least resistance.
“My doctor doesn’t recommend this for me. I’m glad that it works for you.” End of conversation.
Her helpful advice would go nowhere, but her unsolicited volunteer ‘help’ was ultimately responsible for who I am today. Her assistance with my writing group would make the endeavor successful and led to a life-changing fruitful encounter at the end of the second year as ‘captain’ of the writing club.
The ‘helpful’ shoe dropped when another parent, mother of one of my students, grabbed my arm while I pondered the dessert table at the end-of-year class picnic. She offered a different kind of ‘help’ in the form of a thank you, a compliment and open-ended advice rolled into one conversation that I could act upon. It turned out to be a marker for the end of one era of my life, and the beginning of the next.
“Thank you SO MUCH for what you did for my daughter with your writing club,” the conversation string began. “She has always struggled with schoolwork, but being in your club and writing gave her an identity and has changed her attitude. She does her homework without my begging now, is happy to go to school every day. She has learning disabilities, but I’m seeing scholastic improvement across subjects. Whatever you’re doing, it’s working. Have you ever given any thought to becoming a real teacher?”
“Thank you! No I never have. I like doing this, though. Maybe I should.”
After she wandered off, I called up her daughter on the ‘remember-me-forever-line’ phone. Her daughter was a reliable ‘regular’, choosing to voluntarily give up one noon recess once a week and spend the time writing with me. Of all the students in our club, she was the happiest, the most verbal (usually excessively so), and the most brightly enthusiastic about assigning herself things to write about. I liked her spirit.
Three months later, at age 55, I followed her in that same spirit back to college.
Over the summer, I had gone through the seven stages of grief regarding my existing career choice as a graphic designer, and was high on hope for the future again. The college intake counselor threw all her best questions at me. What do you want to be? Where do you see yourself in five years? Will your MS hold you back from performing? Apparently, I hit enough of the pitches out of the ballpark to earn an appointment ticket to grad school in teaching that afternoon. Oh, the fun was just beginning!
When the smoke of my elation cleared, I found myself walking in late on a classroom full of mostly 20-somethings at ‘night-school’. The only seat left was at the front of the room. I could feel eyes burning not only on my advanced age, but on my cane. It was the last time they did. In the next one and a half years, I don’t recall any of them feeling the need to ‘help’ me because I had MS.
The profs were equally enthusiastic about my chances for success, and they all knew I had MS. One of them volunteered to be my ‘mentor’ during an emotionally difficult classroom observation period. I had chosen a struggling inner-city school with at-risk kids, and was disturbed by some of the teacher-student interactions I had observed. I relayed to him that watching the teacher interact was like watching a train wreck in motion. I tried to describe the intellectual and emotional carnage I was witnessing.
“We know about that school. We don’t send students to observe there anymore. We want you to have a better view of good teaching,” was his warning.
“I chose for myself. If I don’t see things at their worst, how will I recognize the best in my own teaching?” was my rational for being there.
“OK, but just know what you’re looking at,” he proffered reluctantly. Then almost immediately, “I’d like to be a close adviser to you. I can help you make sense of what you are seeing.”
He stayed at my side through the ‘observation’ and he didn’t discourage me when I told him I wanted to stay overtime to conduct a special writing class for the most needy there. Unfortunately, he couldn’t be with me during the ‘student candidate teaching’ in the next quarter when the shit hit the fan.
My repeated attempts to contact him were met with silence, so I did some sleuthing. I learned the university was under certification review. Someone outside the school faculty needed to be put in charge of judging the ‘teaching certificate’ portion of their education program “to ensure fairness”. No regular faculty was allowed to have contact.
Fairness was absent when the woman in charge learned I had tripped over a pile of shoes and fell in the third week. Word traveled back to her through the site monitor and now she knew I had MS and was fully determined to use it against me. I was asked to withdraw because I was a ‘safety liability’. When I refused to exit for medical reasons, she piled on through the site monitor. Together, they offered lip service only to the concept of ‘help’ they professed repeatedly in the reviews. I never got any form of ‘help’, except that their prejudice ‘helped’ them decide I wasn’t qualified on any level. They pre-judged my chances for success as near zero, and made it happen as they built a case around the MS symptoms that surfaced during the next seven weeks.
Now, instead of the ‘constructive observations’ promised, I was routinely being checked off in the “not demonstrating competence” boxes on the report form. The classroom instructor who knew me best was outraged.
“I’ve never seen anything like this in 25 years. You’re not the best teacher candidate I’ve watched, but you’re far from the worst,” was his honest assessment. He did what he could to ‘help’ keep me in the game, but he knew the cards were marked. The heavy, unfamiliar workload, and susceptibility to relapse due to stress were the bad cards that were dealt to me.
The knock-out blow of failing sent me reeling for a couple of years. I woke up in one of my therapy sessions with a counselor who decidedly changed my downward cycling path with a single ‘helpful’ suggestion: “Find something that makes you happy and embrace it.”
I immediately took a pleasure tour of the local antique store after my session. An early 20th century penny gumball machine helped me smile briefly, but I demurred at the price.
I was still so new to the critical question that I needed to ask, “What price happiness?”
On the way home that day, I took a precipitous turn trying to avoid street work ahead of me. Around the first corner someone had decorated a large section of the detour street with multi-colored large circles. It was so happy! TOO happy to pass over without reflective pause.
The Gumball Machine! I did a 180 back to the junk store and plunked down $75 asking price without reservation.
“You’re on your way back!” my therapist exclaimed the following week. “Don’t ever forget why.”
In the years to come (and not long after), I found a way to return to what I know is the best possible end-of-life endeavor for me. I haven’t forgotten the things that ‘helped’ me when people and incidents didn’t.
I started the current path I am walking with a purpose: to help children learn how to write. Along the way, I learned that when I’m with them, I’m in 3rd, 4th, or 5th grade all over again. Those were my best years then, and they still are in their presence. I can forget I have MS for as long as I’m in that zone.
Sometime, a new child is initially curious about why I “walk funny” but soon enough they will want to grab my cane and my hat and dance around the room (or at least they did in pre-pandemic times).
They ask me how old I am –I usually say 12 – and they know it’s not true but will entertain the proposition long enough to write and share their best stories with me. They help me smile, I help them laugh. It’s symbiotic happiness at its best.
As I learn what the term ‘to help’ and ‘to be helped’ mean, I look ahead now, and take stock of the current ravages of MS not helping my body. I am not looking forward to ALL of the help I will need in the future that waits for me. But I don’t need to dwell on it. I know the future always arrives and will be here soon enough without trying to imagine how imperfect my condition will become.
I will find something important to do most days– and I’m sure to need somebody to help me. More importantly, I’m gonna look for somebody that needs my help, too.
Author: Al Tietjen
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