Can You See Me Now

Published in anthology: Corners: Voices on Change; Jack Walker Press, June, 2018
Bo Carter Memorial Writing Contest; 2nd place, non-fiction; May, 2018


In 1988 I decided to hide. I’d learned the hard reality of being dispensable from my employer; when I was diagnosed with multiple sclerosis, they wanted to cut me out of the company health insurance plan. That was before the Americans with Disability Act and from that I fully grasped the value of staying hidden.

Before I quit that job, I did some research and the literature was divided on the if, how and when to disclose. There were clearly two schools of thought and I decided since my condition was nearly invisible, with few obvious symptoms, I’d take a shot at non-disclosure.

Moving on to each new job created a dilemma until the ADA became law. Then, I was only required to disclose if I wanted accommodations. MS remissions can be complete and mine were nearly so. There were days I even fooled myself that maybe there’d been a mistake. Still, I always worried I’d be blind-sided by a sudden flare-up. Memories of those days in the hospital, confined to a wheel chair, were only too vivid.  Once in remission, my flare-ups were minor and short.

I was fortunate to have good jobs that allowed me to take a sick day when symptoms arose. I could close my office door and rest my head on my desk for ten minutes. I’d arrive early at meetings to avoid notice if my pace was too slow and always checked the seating situation ahead of time.

Working in highly competitive environments, I didn’t want anyone thinking I couldn’t do the job. I spent many years working in a medical education setting; they above anyone should have been empathetic. And they might have been if I’d been more open. But I couldn’t take the chance of being seen as inadequate. Better to hide.

Next were several supervisory and management positions best described as sedentary, desk jobs. I’m proud that I managed my working life after diagnosis, all twenty-five years of it, without disclosing. My initial goal to remain ambulatory, employable and invisible had been achieved.  Then came retirement.

I smoothly adjusted to a slower lifestyle and went on looking and feeling healthy. But then along came the deterioration so natural with the passage of time. In 2016, a serious MS attack resulted in permanent loss of balance and leg strength; the dreaded moment had arrived. It was like being outed, unmasked. After decades of maintaining my façade of near perfect health, I was suddenly visible.

I’d bought the cane long before I needed it and stored it in the back of my closet. I knew the day would come and I wanted to be ready. I prefer to call it a walking stick. That makes it seem like it’s a fashion accessory. It’s a pretty little thing, with a dark colored paisley-like floral print and a wooden handle. It’s clear that it wasn’t purchased for $7.00 at the local pharmacy.

I was forced to go back to the time when I was first diagnosed, remembering how lucky I’d felt. A chronic illness is better than a life threatening one, I’d told myself. The whole diagnosis/recovery experience had put my life in perspective.

You can’t fight a chronic illness. At least, not successfully. It needs nurturing.  Care. This may sound silly, but I had to think of my disease almost as a friend. And taking care of it has been the strangest relationship I’ve ever been involved in. Then I realized I had another friend.

These days I love my cane. Well, not actually love, but I do appreciate that pretty little thing with the dark colored paisley-like floral print. What would I do without this indispensable tool? And there are some unexpected benefits.

Showing up with a cane does clear the way to your seat in a theater or restaurant. Strangers scurry to open doors, offer an arm or hover around to be sure I’m navigating okay. While attending a Broadway play in New York, I’d dropped my cane under the seats in this crowded theater. A stranger a few seats away jumped up and got down on his knees to get it for me. There are so many nice people the world.

And I’m happy to say thank you. Though most of the time, its thank you for asking but I’m okay. That’s another challenging thing about MS. I have to do as much as I can, be as active as possible; but I walk that fine line between being active and not over-doing.

When I was forced to be visible, my cane became a symbol of my disability, a signal of my decline. It broadcast my limitations to the world; it’s taken quite some time to become comfortable with no longer being hidden. It’s only in looking back that I realized the emotional energy it took to maintain that false self.

My biggest relief was to leave behind the heavy burden of secrets. Today, I’m clear and straightforward about what I’m able to do. For example, a recent lunch with girlfriends included a garden walk. I’d checked ahead to be sure there were sitting areas along the route. I have a new appreciation for railings, automatic doors and ramps.

I get lots of comments on my cane. When someone says how nice it is, I usually respond that if you have to have one, it ought to be nice. Then we knowingly smile. My cane gives me a sense of safety and I do more with it than I ever did without it.

I look back on my work life, satisfied that I made the right decision not disclosing my condition. But what a relief to no longer have to search out places to sit or make lame excuses for why I can’t perform certain tasks. These days, my trusty cane and I are as busy as I want to be. I’ve joined the human race and have become better and stronger, having accepted my limitations. What you see is what you get. That’s my new mantra. And it feels so good.


14 Hours in the ER

February 5, 2018: I knew the drill: the arrival of two trucks and four EMT’s who bring in the stretcher. They’d look me over, do what they could and then make the decision. Off to the hospital.

One EMT I remembered from another time because of his tattoos. Both arms from wrist to elbow were completely covered with a solid tattoo. I’d find out later these are sleeve tattoos. Both arms were covered in what looked like a nature scene. Why would such a clean cut nice looking young man do that to himself. It’s funny what oddball details are  remembered while what seems, at the time,  to be a life-threatening emergency.

This was about 11:00pm on a Monday night. I’d awakened from sleep with an asthma attack. After taking two puffs of albuterol, things began to get better. And then they didn’t. Albuterol doses can only be taken four hours apart. And I was suddenly developing strange symptoms I’d never had before. I was unable to stand, felt weak and anxious, couldn’t breathe and could only see outlines of the EMT’s along with black dots in my field of vision. I was about to faint and felt safe once I was on the stretcher.

As soon as I’m in the ambulance a flurry of activity begins including oxygen, IV’s and blood pressure. Tattoo man was worried when he was unable to get a blood pressure on me. He said at check in that he thought I was having a heart attack. But not so.

Each time I have to take the ambulance to the ER I learn more about the health care system. This time I saw more parts of the ER’s inner workings than ever before. I got wheeled around from the regular rooms to triage. I’d never been in triage before and didn’t even know it existed.

It was scary because I didn’t think I was in that bad of shape for triage. The nurse would explain that it’s a section used for short term cases. Like those Saturday night bar fight incidents where patients are cleared and out quickly. Like cleared medically before going to jail. He said it’s used more on weekends. I was there because the ER was packed and they had no other place for me. I would spend several hours in triage.

While I’m stabilizing the nurse noticed pink spots on both of my calves. As we observed the changes and movement of what looks like bruises, the nurse commented that it looked like the sisterhood of the traveling hives. It’s good to have a laugh in the midst of all this.

Later, a nurse or doctor would tell me I had symptoms of anaphylaxis. Right then I had no idea what that was. I’d learn later about the allergy attack, the different symptoms involved and the new vocabulary I’d have to learn.  And of course, the epi-pen.  But that’s another story.

The ER’s hurried pace and the noise felt like a war zone in a third world country. Or a mash unit. The hospital was at full capacity due to the flu season and many of the doctors and nurses were wearing face masks. So, began the usual round of staff who quickly entered and left after completing their small task.

First the nurse, then the resident and then the attending. Each time they asked the same: what’s going on. I got it that they needed to hear the story directly from me to figure out what’s wrong. I tried not to become annoyed with having to repeat the whole scenario over and over.

Once I was stable with the oxygen and IV’s going it was time to wait. About 3:30am the attending returned to say he didn’t feel right sending me home; they’d poured lots of meds into me, he explained, and if this came back after the meds wore off, I’d be back.   Better for me to stay a while. That’s good because how would I manage a ride home at 3:30 in the morning?

He also explained since the hospital was full, they’d move me to what they called a boarding room, ER rooms that were now mini hospital rooms. He explained that I’m an admitted inpatient and they would move me to a real hospital room as soon as one was available.

The nurse from triage moved me to the boarding room which was very small with no amenities; the bathroom was across the hall. My door had a small window so I passed the time watching the steady stream of stretchers pass through.

Police and security guards were everywhere. My nurse stepped out into the hall for a moment. I heard her talking to a policeman about having something thrown at her. At one point there was a line of stretchers outside my door at a full stop waiting to get checked in down the hall. A stretcher with a man surrounded by four police officers was stopped for several minutes outside my door. All this on a Monday night.

Around 6:00am a nurse showed up and told me she was my nurse until 7:00 and was there anything I needed. She gave me permission to eat so I was happy. Then after 7:00 a new round began. New nurse.  New resident. New attending. I told my story to each once again.

Next, it’s the hospitalist with their Intern in tow. Hospitalists are doctors who cover all inpatients until discharge. In the meantime, I ordered breakfast between having ex-rays and a CAT scan. When I asked, why a cat scan, the nurse said they wanted to be sure I didn’t have a blood clot. That’s why I love teaching hospitals. They look at everything. It would take several hours for my blood pressure to get near normal. The pink spots were lessening. I was starting to feel better.

The hospitalist said I was ready for discharge but had to see one more doctor. That began another process. More waiting. Meantime, I saw a pharmacist to discuss my medications. Then I waited. Another doctor and her intern appeared to reaffirm I’m ready to go home.

My niece came to pick me up and was surprised when a police officer instead of a clerk checked her in and sent her to my room. It had been a challenge to tell her when to come so she didn’t show up before all was done and then waste a lot of time sitting around. The best laid plans didn’t work too well. We waited forever for the final paperwork and the nurse to give his instructions. Finally, I was wheeled to the door and into the car.

Each doctor had responded to my off-hand comment about their busyness saying that I should never think I shouldn’t come in if I need to and that they don’t discharge until they’re sure the patient was ready. And that’s why I love teaching hospitals. When the attending said he was keeping me at 3:30am I was glad. Now at 1:00 pm when they said I could go home, I’m also glad.



Minding My Mindfulness

I’ve been dabbling in mindfulness lately. In February, 2018, I completed a three week Mindfulness Meditation workshop and was trying hard to stay focused on my breath. I learned that there’s just plain mindfulness and then there’s mindful meditation. The instructor said that it is possible to be mindful without Buddhism but you can’t be a Buddhist without mindfulness.

Since I call myself a secular humanist with Buddhist leanings, I thought I’d better pay more attention. And that’s the crux of it. Paying attention. Being present. I’ve absorbed the wisdom of Thich Nhat Hanh and Pema Chodrom and I love the Dalai Lama. I get that it’s a journey and mine has been one of peaks and valleys.  And no matter how long this journey, I seem to always have to go back to the beginning and relearn the basics

The definition of mindfulness is the practice of maintaining a nonjudgmental state of heightened or complete awareness of one’s thoughts, emotions, or experiences on a moment-to-moment basis.  The instructor also said mindfulness makes us kinder. The world needs more of that these days.

All this reminded me of Fall, 2017, when I’d attended a Mindfulness in Writing workshop. It sounded intriguing and I was at an impasse. I had gotten away from my writing and thought this might help me refocus.

The workshop was held at a non-profit wellness center outside of West Bend. I checked maps on the internet just to be sure I knew where I was going and then put the address into my GPS. Off I went, looking ahead to a peaceful day of writing and learning.

I was fine until the GPS said I should turn off the highway one exit before the internet map had indicated. There are times I follow what the GPS says and then there are times I don’t. Whatever my decision, I’ve always reached my destination.  So, this day, I decided to let the GPS be my guide. Perhaps I was trying to be more mindful.  I decided to consciously put aside my obsessive tendencies to always be in control and enjoy the ride.

It’s hard to believe that just a few miles north of a large city there are mile after mile of winding roads, rolling hills and green, sumptuous farmland with not a building or person in sight.  It was a mild, fall day and the colors were in full display. I was enjoying the experience.

I became concerned when the country road I’d turned onto, in a leap of faith, became quite narrow with no painted lines down the middle. Spots on this roadway became a hardly paved trail that couldn’t have accommodated a car passing in the other direction. I got more anxious when I saw a sign that said I was on a ‘bridle path.’  Here I was, driving to a mindfulness workshop and feeling less mindful by the minute.

As is my style, I began to fret that I’d never find this place or worse that I’d be late. One of my cardinal rules of life is to never be late. Three minutes before the workshop start time. I glimpsed hope ahead. The clearing revealed a road. A regular road with pavement and painted lines down the middle. The GPS said turn left and there it was. Within 50 feet, I’d arrived. The instructor was waiting at the door and I joked to her that my ride might have been a lesson in being mindful.

The workshop was small with the instructor and five writers. We started with mediation and then several forced writings that have since yielded a poem and two essays.  After lunch we had a purposeful time of personal reflection. Just spending some time on our own and taking in our environment.

The afternoon began with another meditation followed by more deep writing. Several of the exercises involved simply observing and writing about our surroundings. Noticing what we might miss in the busyness of our regular activities.

All in all, it was a good day. What might be the best thing is that we slowed down. And that’s the essence of mindfulness.  Since the writing workshop, I’ve been more aware of the stories that are right there before my eyes; the tiniest observation can provide material for an essay or a poem. My new but small daily meditation practice has helped keep me balanced.

On my way out of the center, I stopped at the front desk and asked for directions to the county road I’d originally intended to take. I followed those directions and was back on the highway in minutes and home in no time. All on paved and marked roads! I wonder if taking charge and breaking the rules is part of being mindful too. Namaste.



On Being Dependently Independent

Anyone who’s lived their life on the go, able to do whatever they’ve wanted, finds it hard to admit when they suddenly have limits. That they might need help. Asking for favors is difficult. This has been my challenge for many years as my limitations have increased. But I think I’ve finally figured out how to accomplish my daily goals while not trying to be wonder woman.

My adjustment began simply and I was probably in denial for a long time. Starting with using the handicapped card stuck to the rear-view mirror. At first, I only used it when there were several other empty spots at the Target store. I felt self-conscious since I looked so healthy and maybe I was depriving someone who really needed it.

Then there was my cane. I felt so conspicuous. At first, I only used it outside my apartment building, reasoning that my home environment was familiar and predictable. I avoid hilly or unpaved terrain. No more hiking.

I had guilt feelings when I hired a housekeeper. Maybe I’m just lazy I scolded myself. But I couldn’t do the reaching and bending necessary to clean the bathtub and vacuum. Sandy now comes once a month and I love the clean, fresh scent she leaves behind.

Who am I to use valet parking and a wheel chair when I see others, worse off than me, going in for their medical appointments. The specialty clinics I need to visit require elevator rides and trekking far into the long corridors of the hospital. My niece is adamant that she can and wants to take me there and is proud of her wheel chair transport skills.

Since I no longer can drive at night, I’m dependent on friends to pick me up on those rare occasions when we plan a night-time get together. Last time, it felt so strange even to be in a car after dark. I’m wistfully recalling when I never gave it a thought.

My most recent accommodation is home grocery delivery. It’s done on-line, paid by credit card and delivery is in a three-hour time frame on the day I pick. They even keep a history of past orders so it’s easy to compile future lists. It’s a lovely miracle when that polite young man shows up at my door with these nicely sorted bags and boxes.

With all these adjustments, my life has changed drastically. I often ask myself if I’m winning or losing this battle. I’ve decided I’m winning. Of course, there are some things I’ll never do again. But I now have more time and energy to do the interesting and fun things that make it all worthwhile.

And if accepting a little help is all it takes, I’m okay with that. What I always thought was a big deal seems to make no difference to anyone else but me. I have plenty of offers to help and often say thanks but no thanks. But I’m always pleased when someone makes the gesture. There sure are a lot of nice people in the world.

I’ll never be one of those a cranky old ladies who refuses to accept help then has a fall and needs a higher level of care. Thinking carefully and planning ahead is the way to go. I’m happy resting in this comfortable spot, nestled  between being independent and dependent.

The Chronic Illness Lecture

I was puzzled when I saw the paper posted on the bulletin board in my friend Cyndy’s kitchen. With back marker, she’d written “The Chronic Illness Lecture” in bold letters across the top. I recalled thinking it was odd when she’d asked me to write down my “lecture” and e-mail it to her.  She said it made her remember our talk and kept her on track.

It had all started when Cyndy had called off several of our planned activities. That’s not like her to postpone our all-important lunches and shopping trips. Her vague explanation was that she had to stay near the bathroom.  She clearly didn’t want to talk about it. I worried and finally badgered her to tell me what was going on.

She described symptoms only in a general way. From what she said, I deduced it was one of several common gastro-intestinal problems. It sounded  like much more than acid reflux; irritable bowel syndrome, ulcerative colitis or even crohn’s disease was my thought.

But she was reluctant to give me many details of her recent flurry of doctor visits; she seemed hell bent to fight this thing until she was rid of it. After a month or so of hearing her latest adventure in the world of medicine, I couldn’t hold it in any longer.

I’d been dealing with MS for more than twenty five years and had come to accept the reality of dealing with a chronic health condition. I’d never told anyone about my disease; the law said I’d didn’t have to tell an employer so I’d maintained my work and private life keeping this carefully guarded secret. Now I felt I needed to make an exception. We sat down for a talk.

In the cure oriented world we live in, I began, there’s little attention paid to chronic health conditions. The kind for which there is no cure. These are the ones that don’t come to visit for a while, then get fixed and go away. Instead, these move in for the duration, most of the time, for the rest of your life.

I recalled how before my diagnosis I’d visited many doctors and therapists for an explanation of mysterious symptoms that would come and go. In each instance, I was told I was either stressed or depressed.  Most often, both. Then I was offered an anti-depressant and told to work through it, stay on it. Fight it. Exactly the wrong thing to do.

So, I learned the hard way what happens when you do battle with a chronic health condition. You lose. This slimy parasite has invaded your body and it will have its way with you.   That’s basically the essence of the chronic illness lecture. You have to take care of it. Adjust to it. I’d read an article that recommended treating it as you would a friend with special needs.  Now that’s the epitome of the love/hate relationship if I ever heard one. But It is reality. I told the short story of what I’d learned.

I thought we were having one of our usual girlfriend chats. I didn’t think I was lecturing but perhaps I was. That’s because I felt so strongly about this and had watched Cyndy’s anxiety grow as it became a real possibility that a total cure might be out of reach.

As time passed she seemed calmer, more in control. I never did find out what her actual diagnosis was.  She refused to name it. Eventually, I lost touch with Cyndy after her move to another part of the country. So, I don’t know what the end result was for her.  But I know this taught me a lot and, more important, it reinforced the importance of how to handle my own situation.

I get a kick out of recalling our short time together and how she appreciated the insight I shared with her. But I think I got more out of it than she did because it was a reminder of what I needed to do to stay healthy. And though I’ve never posted the chronic illness lecture on a bulletin board or on my bathroom mirror, I often give myself the talk when I get off track.

Going on a Butter Run

Everybody knows what a beer run is. This is Wisconsin, after all. So, it was déjà vu when recently talking with my friend, Betty, recalling our long ago, wild college days in the 1960’s. That quickly lead to my declaration: by the way, I’m going on a butter run.

For the last month, I hadn’t been able to leave my apartment, let alone get into my car and go grocery shopping. In fact, this latest MS flare had rendered me unable to walk from the bedroom to the kitchen. I’d wondered if life would ever return to normal. The second month was better but I still had doubts.

I’d grudgingly adjusted to my niece kindly getting my groceries.  When you’ve been healthy and independent it’s really hard to ask for help and depend on others for the simplest things.  Trying to be self-sufficient, I’d researched the various home grocery delivery services advertised on the internet; the thought of navigating a cart up and down the many aisles of my neighborhood store was unthinkable.

My angst intensified the day I looked in the refrigerator and realized I was almost out of butter. I know. That doesn’t sound like the end of the world but this simple task had morphed into a simulation of climbing Mt. Everest. At that moment, in my situation, it was a jolt. So, I was at a crossroads which leads me back to my conversation with Betty.

As we talked about my progress and how I wanted to do it myself, I told her I was thinking about going to the grocery store to solve my butter problem. I said I was only going for butter and knew exactly where it was in the store. We both lamented how dairy products were in an obscure aisle at the far end and what an inconvenience that was when all you want was a carton of milk or eggs. Or butter.

I recalled my therapist thirty years ago when I’d first been diagnosed and how he’d helped me readjust back to normal life. He taught me to visualize myself doing each step of a new activity. Then doing it.  I meditated on this trip to a grocery store as though it was a vision quest and clearly saw the whole thing.

I’d walk in, get a cart and take the shortest route to the butter.  Betty encouraged me to use the electronic check-out rather than risking standing in a long line. She gave me a short tutorial. It’s easy, she said.

It felt really weird driving my car since I’d only attempted short trips in the last few weeks. As I drove the parkway, I marveled at how good it felt to be out in the world just like a regular person. I’d missed it. I channeled Jack Kerouac and meditated with Willie Nelson for their wisdom on taking trips.

While my modest little adventure couldn’t compare with the magnitude of their saga, it was pretty monumental to me. I even got cocky and diverted, stopping for my favorite lemonade on the way to the check-out. I arrived back home with a real sense of accomplishment. And a plan.

Adjustment is the name of the game and adjust I will. I accept that I’m relegated to small shopping trips at least until I’ve built up my strength and stamina. I’m going to go shopping again and only pick up two or three things at a time. A butter run is only the beginning. There’s the Chai tea run. The ingredients for chili run. The stock up on frozen dinners run. Even a brandy run. I guess that means life is getting back to normal after all.



A Little Bigger World

In a world where everyone’s going at high speed, there’s nothing like being put down by illness. The world suddenly becomes very small. When MS decides to flare, it’s the boss. It becomes a trial of my patience and the challenge of accepting I’m not in charge. Though diagnosed over thirty years ago, this flare was like being back at the beginning.

I thought I knew what to do and what it would take to get better. I wrote off the month of July. Stuck in my apartment, most days I spoke to no one. Saw no one. A big accomplishment was to check my e-mail and make lunch. Otherwise, resting and watching for small improvements.

I’d look at the calendar just to remind myself what day it was and think how was this day compared to yesterday. Were the symptoms lessoning. Did I have more energy. Would  my life ever get back to normal. What if I didn’t get better. I watched out my window, with envy, as the cheers from the soccer games in the park across the street rise to a frenzy. That’s what happens; the world passes you by.

Too much time to think. In fact, that’s all there is. Time to think. I know how everyone dreams of down time and being able to kick back, read a book or take naps and putter. But when it’s all you can do, that put a whole different spin on it.  Time becomes a curse. I read several books and watched TV constantly. And while the latest political shenanigans were entertaining, sort of like a national soap opera, even that lost its allure after a while.

Each morning started out the same. Check symptoms. Decide what I’m able to do. That fine line was always there. Stay active but don’t overdo, say all the well-meaning health care professionals. No one was sure what that meant. Especially since each case was different.   What’s overdoing for me would be okay for someone else.

I felt so mentally healthy the first day I was able to walk down to the lobby and get my mail. Then I did mail and also the laundry. Yippee! Then I added walking down to the garden and sitting for a while, reading in my Adirondack chair. I tried to add some small thing each day. But not too much lest I overdo.

A truly great day was when I could stand long enough to take a shower. Then stand long enough to use the blow drier. Even greater, the first day I drove my car three blocks to the pharmacy. I’d first checked out my perception of the brake and the gas pedal.

These small things became huge accomplishments.  Then because it felt so good and I felt so masterful, I overdid myself. Back to square one or two. So, I put a sign on my door in very big letters. DON’T OVER-DO! I hope this helps.

I’ve also written off the month of August. Remission is so slow, I’m finally being realistic. I’ll be checking symptoms and pacing myself for a long time. But today I’m happy with the small things I can accomplish and pleased that my small world gets bigger each day.

My Small World

I’ve written off the month of July. Though it’s only the 10th I know where this is going. I know what it will take. When MS decides to flare, it’s the boss. It becomes a trial of my patience and the challenge of accepting I’m not in charge.

Stuck in this apartment. I’ve been outside for only short periods here and there. Yesterday, I spoke to no one. Saw no one. I checked my e-mail. Everyone is out having fun for the weekend. That’s what happens; the rest of the world passes you by.

It’s only been two weeks but it feels like much longer. I look at the calendar just to remind myself what day it is and how does this one compare to yesterday. Are the symptoms lessoning. Do I have more energy. How much longer. Will my life ever get back to normal. What if I don’t get better.

That’s one thing about being sick. Too much time to think. In fact, that’s all there is. Time to think. Rumination is so unproductive. But what else is there to do. I know how everyone dreams of down time and being able to kick back, read a book or take naps and putter. But when it’s all you can do, that puts a whole different spins on it.

Each morning starts out the same. Check symptoms. Decide what I’m able to do. That fine line is always there. Stay active but don’t overdo, say all the well-meaning health care professionals. No one is sure what that means. Especially since each case is different.   What is overdoing for me is different than for someone else.

So, I’ve set up tests. I felt so mentally healthy the first day I was able to walk down to the lobby and get my mail. Then I did that walk and also did laundry. Then I added walking down to the garden and sitting for a while. I try to add some small thing each day. But not too much lest I overdo.

Then I overdo. Back to square one or two. So, I put a sign on my door in very big letters. DON”T OVER-DO! I hope this helps.


The Secret is Out

I kept it all a secret. Working in a highly competitive environment, I didn’t want anyone thinking I couldn’t do the job. But I was working in a medical setting; they, above anyone else, should have been empathic. I decided I couldn’t take the chance of being seen as inadequate or damaged.

I’d learned that hard lesson of being dispensable  when my employer at the time of diagnosis wanted to cut me out of the company health insurance. That was before the Americans with Disability Act, but still, I understood the value of staying hidden.

It was invisible anyway. MS remissions can be quite complete. And so were mine. There were times I even thought there was nothing going on anymore. No symptoms. Still, I always worried that I’d be blind-sided by a sudden flare-up. Memories of those days in the hospital when I was confined to a wheel chair were only too vivid.

But then there were those fabulous days; remission would kick in and there was no stopping the improvements occurring at lightning speed from one day to the next. I was lucky enough to have a good job that allowed me to take a sick day when I felt tired. Also, lucky enough to have no children to take up my time when I needed to focus completely on myself.

I’m proud that I managed my working life after diagnosis, twenty five years of it, without disclosing.  Even though the law was protecting me. My initial goal to remain ambulatory and remain employable had been achieved.  Then came retirement.

I adjusted to this new life and went on, looking and feeling healthy. I’d seemed to leave it all behind. But then there was the natural deterioration brought on by aging. And when a final attack resulted in loss of balance and leg strength, I felt like I was being outed, unmasked. Now, I needed a cane. I was no longer invisible.


The first time I said the word out loud was at my annual doctor visit. She’d asked a simple opening question, how are you doing? And I was surprised how easily it fell out of my mouth. I feel like I’m dwindling. Her incredulous What? surprised me. I did a casual take-back and we went on to more pressing topics.

I got a similar reaction when I’d said the word to a couple of friends. Again, it was a you-must- be-joking kind of response.  But the feeling is real. It started last year when I’d had surgery and was informed just before doing under that the anesthetic was known to affect MS. And sure enough, it did affect mine.

It took a few days, in fact I was already home from the hospital, for me to realize it; but the symptoms didn’t lie. The numbness in my right hand and then starting in the feet and coming up the legs was all too familiar. So, I was recuperating from gall bladder surgery with the nausea and general weakness and had to deal with this too. That’s what made me think of that downward spiral. Dwindling.

It’s an old word that I’d learned as a social worker long ago when I was managing a caseload of over one hundred elderly and disabled adults. It was my job to keep them at home and living independently as long as they were able. My routine, yearly contact often was full of surprises as I watched that vibrant Edith and that feisty Alice become more frail with each visit.

The medical definition of dwindling is a condition of physical deterioration involving several body systems, usually in an elderly person or a colloquial term for failure to thrive. “The dwindles” it was called. While I don’t fit the medical definition, there is still something going on.

The thing about each MS exacerbation is that there is always loss. And with each incident, I could tell. Less strength. Less stamina. Poorer balance. I hadn’t had an incident in quite a while so this one was more dramatic. This time, the balance had been very affected and my usual full remission didn’t occur. I have to use my walking stick much more and that’s been quite an adjustment. Perhaps because it’s so visible.

I guess that settles it. Though I don’t fit that medical definition I know what’s going on. But actually, we all are dwindling aren’t we? The twenty year old athlete at forty can’t accomplish what he used to. Hugh Grant’s wrinkles attest to the loss of his boyish good looks. Andrea Mitchell’s fumbling words mark the approach of possible retirement. These are realities and they affect us all.

Maybe it’s word choice that causes such discomfort. In my case, its caused quite a reaction. So let’s say the same thing in a more palatable way. My thesaurus connects dwindling to declining, decreasing, diminishing.  That still sounds pretty ominous to me. But hey, how’s that for poetic alliteration!


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