Millennials with MS


“You may never know what results come of your action, but if you do nothing there will be no result.”

Mahatma Gandhi

We have just graduated and entered the hierarchy of adulthood. Freedom has been redefined for our lives, unlike the freedom of college speckled with exams and class time. Now freedom means – living on our own, paying our own bills, making adult decisions (that have actual consequences), and falling in and out of love and friendship at whatever speed we want. We have become grown-ups – we are complicated people. We are millennials.

We are single, independent and fearless in our self-fulfilling prophecies and self-absorbed ways. We are the largest and smartest generation. We are crushed with student loan debt, living off canned beans and the occasional, self-indulgent $9 burrito from the taco shop down the street. We are finding our way in an evolving work force, with scarce job opportunities and the harrowing idea that pensions and 401ks may not (will not) exist in our futures.


We also now have multiple sclerosis.


The future that we planned begins to dissolve around the intangible idea that we now don’t know what our future will look like. Everything changes, just when things are beginning to take off. We worked years to be here, in this apartment, with this job and with the road outstretched before us with many destinations in mind, and with the student loan debt to prove it. Now we don’t know what to think and planning seems like the worst conceivable thing to do ever.

What does this mean for us? Most of us eat alone, crawl into bed alone, binge watch Netflix alone and support ourselves alone. Our single-dom is rapidly increasing. In a survey of 18-29 year olds, 64% reported being single in 2014, up 12% from 2004.

And what does a person living with MS need the most? Support.

When I make a decision about my healthcare, my inclusion/exclusion criteria is one item only– will this help me? Will it keep me thriving? Financial cost or burden doesn’t even enter my equation until the insurance statements that turn into bills are piled by my front door. Pretty risky when I live solely on my own health insurance, and, because I am stingy with my paycheck (or rather, Sallie Mae is stingy with my paycheck), have foregone the added costs of long-term disability and HFSA and opted for the middle of the road deductible plan. As long as I can still afford my canned beans.

To put it bluntly – the days of the single-income household are long gone. For a family to thrive, it requires two incomes, at minimum. Where does that leave the single, young persons living with MS? Now, more than ever, it is essential to our survival to remain in the workforce. The average cost of living with MS per person, per year is estimated at $70,000. The average number of years that people leave the workforce after a diagnosis of multiple sclerosis is 10 years. The median household income is around $51,000. I’m no mathematician, but that does not add up. Not even close.

Onset diagnosis age is our 20’s and 30’s. Just when we are figuring everything out and finally learning how to get the most back from our taxes every April, and how to juggle happy hour and working out at 6am the next day to burn off that burrito. Just when we are falling in love and planning a life with someone – we are slammed with words and phrases like “no cure, coinsurance, deductible, disability, it will progress and disease-modifying drugs.” It’s enough to make your head spin and you had just hit the ground running, slowing to a nice jog and enjoying the scenery of the kingdom of adulthood.

So we sit alone with our decisions. What drug do I take? How do I inject myself? This one doesn’t have enough research behind it. I’m too tired to move, but I haven’t seen my friends in weeks. How will I afford these copays? Do I tell my boss? I just got this job. I’m too young to feel this tired. How will I go to work and sit 4 hours every week for my infusions? We were literally invincible two months ago.

But even if we are alone, balancing our checkbook and calculating the importance of groceries over paying our copays this month, we are never without support. We are never truly alone. Our teammates are wearing orange and bustling about at the National MS Society.

Despite the uphill battle we millennials are facing, we have one remarkable thing that many of those who came before us did not have – we have h o p e. And hope, my friends, I’ve learned, is the most powerful thing once you let it in and allow it time to do it’s magic.

Research is exploding. The onset of my first symptom led to a diagnosis of CIS, Clinically Isolated Syndrome; we watch, we wait – we don’t treat. Just two years later (two years!) – a diagnosis of CIS immediately results in a person starting a disease-modifying drug. We are advancing, we are making strides – we are closer than ever.

There are thirteen available disease-modifying drugs for relapsing-remitting multiple sclerosis, and more on the way – drugs that will be aimed at repair and not just reducing the number of relapses. The first drug ever for progressive MS is now FDA approved. Giving people who had no hope a sense of possibility.

We have more people in our corner than you could ever imagine. They are only a phone call away, and they will help. Our teammates at the NMSS help us navigate our insurance when it sucks and denies us coverage, help us get an air conditioner for those blistering summer days, help us connect with other young folks who are feeling exactly like us. They advocate for us and fight every single day for us.

Millennials are often labeled as lazy, entitled, self-absorbed and devoid of a work ethic. I’ve found this to be the opposite. Research has shown that employers must go beyond productivity demands to satisfy millennials. We don’t care about the how – we care about the why. We want a cause, we want a reason to do the work, and most importantly we want results.

The result millennials who are living with MS want? A cure.

All roads leading that direction are paved with advocacy, volunteering, getting involved, connecting and raising awareness. The MS Society will do more than their share of the work, but we have to put in the time, too.

We have the heart, I know we have the work ethic, and though we may not have the time or money, we more than anyone need to inspire hope – in others who can lend a helping hand, in those less fortunate, and most importantly, in each other. We may be alone in our 1-bedroom apartments, but together we are stronger. Together we will turn our hope into actions and turn our actions into results. We just have to come together and do it.

MS kills connection. Connection kills MS.


“It’s not about perfect, it’s about effort. And when you bring that effort every single day, that’s where transformation happens. That’s how change occurs.”

Jillian Michaels

New year. Gyms are packed, resolutions have been set and the champagne bottles are taken out with the recycling. So what now?

A new year always feels nice. A fresh start, a clean slate. A new language for brand new days and experiences ahead. New goals. And how could we forget, the resolutions. Oh, how many resolutions I have made and never kept.

The trouble with resolutions is, we expect them to change everything. Right? We crave change, while being immensely fearful of it at the same time. So we make these resolutions and never follow through. Why?

But it’s a new year! It is supposed to give us the clean slate we are so desperately aching for as last years resolutions have failed miserably. But as we head into a new year, year after year, I doubt much has changed at all. Because we don’t want anything to change.

As I approach 30, I’ve started to look at resolutions as amendments to myself, instead of trying to change everything completely. Especially these past few years – I never know what course my MS will take, or what tests I will have to have done, or if I may slide through another year without an exacerbation. There’s not a lot that I can change, I’m just trying to keep the status quo.

Overall, I don’t have too much to say about 2015. It was a year of tremendous loss for my family. I rebelled against my MS and my injections in a very unhealthy manner and made the anti-climatic decision to switch to an oral medication after having yet another exacerbation and my 5th episode of optic neuritis.

So where does that leave me on New Year’s Eve, counting down to midnight with a chute of bubbly in my right hand and an engagement ring on my left? Pretty much in the same exact place the next morning, on the first day of this brand new year.

Unless I make some decisions. Unless I make some changes. 

So, as I reflect on this past year, my 2016 self-amendments are the things I want to put more energy toward to improve myself, not necessarily change everything altogether. Maybe they will help me to improve my presence in this world and in the lives of the people I love and in the lives of the patients I treat.

  1. Love. If you know me, you know you can find an endless supply of hugs, or a good cuddle session or a list of the reasons I love you. Ask me, or I may just supply unprompted. After the loss my family has suffered, I’ve come to think it just still isn’t enough. So I plan to say it more, and attempt to show it more. I love you, and I will let you know. I don’t think anyone has ever suffered from knowing they are loved, or being reminded of it. I used to think loving too much made you too vulnerable. I don’t think I’ve ever regretted loving too much, but I have definitely missed out by keeping my mouth shut. This world could use a little more love. Spread it around.
  2. Discipline. 2015 was wildly reckless for me in terms of managing my MS, understanding my symptoms and dealing with the emotional toll the disease can take. The effects of which I have not felt until this past year. So, this year, I will introduce discipline (back) into my life. I will understand entirely the medications I am taking, the side effects and will not skip a beat with dosing. I will monitor my energy and activities better and ensure I am getting the amount of rest that I need. I will pay attention to my body, not just because of the MS, but because it deserves my undivided attention. Remembering, we only get this one.
  3. Yes. What is it they say? “The year of yes.” Yes! Let’s say yes to more, and not out of obligation, but because we want to. (Also remembering that “No.” is a complete sentence.) Saying yes opens many, many doors. New adventures, experiences and memories. Saying yes means more time with friends and loved ones, even if time is an inconvenience, they are not. Yes to catching up with a friend on a weekday even when you’re tired and have a million other things to do. Yes to the chocolate cake for dessert. Yes to being more spontaneous. Yes to all the things you want to do, instead of all the things we have to do. We have time for more yes, I promise.

I challenge you to come up with three self-amendments – what do you want to put more energy into in 2016? Remember, there’s only 365 more days until we have to do this all over again. Make it a good one.


Here’s To Your Story

“Your time is limited, so don’t waste it living someone else’s life. Don’t be trapped by dogma – which is living with the results of other people’s thinking. Don’t let the noise of other’s opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary.”

Steve Jobs

You are a college freshman in a new city, with new people, and a new bed. Your main goals are to make friends, have fun, create memories, and throughout the process make mistakes – all while trying to be an adult. You find your group of people, the ones who you can be yourself around, the ones you can have spontaneous dance parties with, enjoy brunch with, the ones who you make those said mistakes with, but most importantly the ones who you know will be there for you no matter what.

Fast forward through tears and laughter, the heartbreak and excitement of relationships, many nights out on the town, and obviously all of the studying and grades. What really happens is you grow, you learn, and come away with people in your life that will be there, whether you speak everyday or once a year. Your people.

When your 22-year-old best friend tells you she’s having blurry vision, you automatically think she probably needs a new contact prescription. When a young, ‘ignorant’ doctor tells her she probably has MS after 2 minutes of meeting with her, you are outraged that someone in healthcare could be that brash. And then reality hits and you actually cannot wrap your head around not just any 22 year old being diagnosed with Multiple Sclerosis, but one of your best friends.

As an occupational therapist I knew what that diagnosis could mean, I knew what the future could hold. I had worked with people diagnosed with MS before, but it is so different when it’s your person who is going through it all.

We take so much of our lives for granted and we don’t always get to choose what happens to us. What we do get to choose is how we react to what happens, how it affects our demeanor, and our future choices.

This is what I get to think about having a best friend who is diagnosed with Multiple Sclerosis. I don’t think about the what if’s, I don’t think about how it “should” be. I believe we create the future we live into. I believe in positivity, I believe in thoughts creating words, and words being your law. If you believe you are sick, happy, fat, successful, stupid, loveable, doomed, beautiful, then that is what you will put out into the world and create.

If you must choose your story, why not choose a great one? Why would one believe all the occurrences in life should be negative? That doesn’t sound like a life anyone would choose, and yet some of us do. Shaylea is not that person. It is not in spite of MS that she still lives a beautiful life, it is not because of MS that she still goes after success in her career, it is not to show MS who’s boss (being one of the considerate people I know). It is simply because – why would she live any other way?

Without MS she would be who she is today – a strong, independent, successful, stubborn as hell, beautiful woman. Multiple Sclerosis is not a label that has to dictate every inch of not only Shay’s life, but the life of anyone who has been given a diagnosis.

The take away from having someone as special as Shay in your life (and now all of you have that with this blog), is you get to create your life exactly how you want it. That is what she is doing and we all deserve to take a lesson from that book.

This book is not a fairytale; it’s simply a story. Undesirable things happen in all stories because life would be quite boring if the main character never had to overcome or work toward anything.

So I leave you with p o s s i b i l i t y. From here on out you have the ability to choose what your story looks like. Keep what you love, transform what you don’t and create what you were always meant to be.

By: Gillian Klein


“Sometimes we can offer a cure, sometimes only a salve, sometimes not even that. But whatever we can offer, our interventions, and the risks and sacrifices they entail, are justified only if they serve the larger aims of a person’s life. When we forget that, the suffering we inflict can be barbaric. When we remember it, the good we do can be breathtaking.”

Atul Gawande, Being Mortal

Productivity. If we aren’t productive, we aren’t paid. If we aren’t paid, we can’t live. Well, not with a six-figure loan hanging over our heads. The problem, however, is not in the definition of the word; it is the person defining it for us – somewhere in a conference room on a national level.

A physical therapist’s productivity is defined by the billable units submitted on behalf of his or her skilled intervention. If a patient can’t participate, it serves their therapist’s productivity to defer and treat another patient – one who is willing and able to be involved.

How many times have you been working with a patient, especially a patient with a progressive neurologic condition, and thought to yourself, “Wow, this is brutal.”? ‘None’ is an unacceptable answer, assuming you’re human.

I got my first gut check within the first month of starting inpatient rehab. I was covering another therapist’s caseload and working with a nice older man, maybe mid-70s if I remember right, presenting with a diagnosis of ‘RRMS exacerbation – likely secondary progressive MS’. My initial response (in my head) was “AWESOME…I can take this MSCS (Multiple Sclerosis Certified Specialist) thing out for a spin.” Then it hit me that I was so excited to work with someone who would never fully recover, but manage. I hate how I used that word. Manage. Make them comfortable. As an overachieving therapist, it can sound just like failure. I can’t heal him or get him back to where he was before, but I’ll help him manage the disease and limitations. A silver medal in recovery.

It’s an expected, but still wrenching, kick in the teeth when you realize you’re just as broken as your patients and you’re not almighty and powerful to the point of reversing plaque build-up in someone’s nervous system. So you go about your day and help someone manage their impairments to live their life. In this man’s case, he needed more managing than most.

Manage his contractures; his skin breakdown; his Foley catheter; his waning mobility; his fading mind. After a few sessions with him walking short household distances with his walker and a good bit of help (MaxA?), he thanked me. I was thinking what the hell is he thanking me for? I basically carried him across the gym floor, both of us damp with sweat, for a walk that would be hard to deem functional. Here I am, a ‘specialist’ on paper, feeling defeat at every day for 90minutes of therapy – knowing that he would go home and continue his downward progression. His affect couldn’t be flatter if he tried…and that’s coming from someone who worked solely with people diagnosed with Parkinson’s. (Flat affects tend to be a characteristic of people living with Parkinson’s). He said that he probably wouldn’t walk much at home, but that it felt good just to be up walking and that he “felt like a whole person when (he) walks.”

He singlehandedly knocked off my physical-therapist-treating-MS hat and made me put on my other one: son of someone living with MS. Her symptoms haven’t progressed recently and she still functions as a practicing physical therapist, but there’s always the looming threat of disability. For all we know with modern medicine, she could look just like this guy in a matter of years. Highly unlikely, but a chance is a chance; I happened to make all of my beer money in college thanks to chance (and a pretty good understanding of implied odds…seriously, don’t take me to AC/Vegas).

If my mom ever gets to the point where she needs caregiver help or nursing or therapy, I hope her therapist doesn’t come in expecting to heal her or manage her; the therapist should come in with no expectations, no pity ready to be doled out. People with MS don’t need our pity because, in all honesty, they’re probably the stronger soul. I haven’t met someone with MS who wasn’t upbeat, barring the occasional gravity of the situation getting the better of them on a day here and there. No. I would hope that any therapist or healthcare professional could help her do the things that make her feel worthy and whole – she’s more than strong enough, even if she feels like some of the pieces aren’t there.

You might be thinking that the maximally assisted walk could have been time spent managing a different impairment, but the person whose life is directly limited by those impairments wouldn’t trade the ugliness of that walk for anything in the world if walking is what makes them feel whole. One of our greatest problems is that those who define what is productive are not the same as those who define what is meaningful.

It’s your job to balance your books and keep everything both functional and meaningful to their recovery. I mean, that’s why you’re here…isn’t it?

-Bobby Hand PT, DPT, MSCS


“Everything that is done in the world is done by hope.”

Martin Luther King Jr.

It was like watching a video clip on replay, waiting for the valet to bring our car around.

Assisted to stand from her wheelchair, gripping her husband’s forearms for support. Pivoting, unable to lift her feet, to sit in the passenger seat. She hangs onto the seat and door awkwardly while he folds the wheelchair and puts it in the trunk. He comes around to her again to put her legs in, first left then right. Her legs spasm in response to his quick movements. She adjusts herself and he shuts the door.

Next. And so swings the revolving door.

I squeezed L’s hand tight and hoped that would never be something L would have to do for me. I leaned in close to L’s cheek. L’s hair smelled sweet from the hair wax. I took a deep breath and felt grateful for the unconditional love of someone. Disease or no disease.

We had just come from dinner, speckled with speakers discussing the forefront of MS research, giving us glimpses of what is to come. What’s around the next corner – and boy, did it sound good.

For the first time – EVER – there is a drug for Progressive MS. It is still in phase III trials I believe, but it’s here. For those who were told there is, literally, nothing we can do for you, there is now  h o p e .

A husband and wife sat down next to us. So which one of you has MS? Hands raised, heads nod in almost comical reply. It’s a club, each member serving years, membership never needing to be renewed. He had been living with MS for 30 years, a lifetime compared to my measly 3.

It’s easy to tell who in the room has MS, for the most part. Their feet drag, their trunks are rotated due to muscle imbalance, and most obviously, they are using an assistive device. A cane, a walker or a scooter. They stare back at me. I wonder what they are thinking. Are they mad that I have no disability? No visible difficulty? Are they mad that I have access to disease modifying drugs? Well, I am mad. I am mad that I was diagnosed in a time with options and they weren’t able to have any.

They are the true warriors. They are the reason I am so positive. They are the reason I keep going and feel any sense of hope.

The National MS Society was founded in 1946. There were no disease modifying drugs until 1993. MS had been a recognized neurological disease since the late 1800’s.

When I think of the people who were given a diagnosis and then told there was nothing to be done, I can’t believe how far we have come. Even in the past 8 years – there is now a drug for progressive MS (in phase III trials) and there are a handful of new drugs in phase III trials waiting for approval. Drugs aimed at repair, not just at reducing relapses or slowing progression.

I glance around the room filled with such amazing people. Dedicated people. People who have spent their whole lives living with MS, sitting next to their care partners who have done just the same. Neurologists who have spent hours with patients, delivered bad news and tirelessly searched for new treatments. Dedicated staff of the MS Society who bring about the changes, and the finances and the resources to change people’s lives and change the direction and management of MS. If I had to be a member of any club – I would want it to be this one.

I sip my water and rub L’s shoulder. I tear up during all the speeches. It’s one of the few times I let myself be vulnerable to the disease that holds me hostage. Because more than anything – I want to hope. I want to believe that there will be a day when we are free of MS.


“17 and all your dreams are knocking on your front door. 25 you realize that nothing is the same as before. Where did we go, where did we go all of those years? How did we end up, how did we end up here?

The Gospel Whiskey Runners

I know what they are talking about. She gives him Benadryl to ward off an allergic reaction and he consents.

I peer around the curtain divider at the two glass bottles on the counter next to the sink with the industrial hand soap.

Those used to have my name written on them. Before a man in a suit, behind a desk at Cigna, decided, “it is no longer deemed medically necessary for the treatment of multiple sclerosis.”

I watch with a fervent envy as the nurse hangs the first bottle on his drip. I relax back into my recliner and sigh heavy. I shift my weight around under the pillow with the parchment paper and keep my elbow straight and supported. It hurts when I bend it.

So I find myself here again. Only it’s not the magical clear bubbles going into my veins, it’s the icy cold steroids that leave a metallic taste in my mouth for days. The nurse flushes my veins and my arm is so cold. I can feel it being pumped in up through my arm, I trace it with my fingertip. I pull my sweater up over my shoulders.

The Vaseline returned two weeks ago, over my left eye. Exacerbated by heat and the florescent lights at work – I ignored it until I couldn’t anymore. Until my dad’s common sense got the better of me.

I can’t explain to you how it feels when the decisions you’ve made about your health, about your progressive medical condition seem to be failing you. It isn’t working. The only options available to me are not working.

She comes in and checks my blood pressure. It always runs low and sometimes I feel her watching me. I hear my neighbor shift his weight as well and I see the pump filling him with all that goodness. God, how I wish to be on the other end of that drip.

How I wish to go back to last fall, last November when I sat here twice a month. Laughing, sleeping, talking with the nurses. I was a regular. I felt amazing. Better than I had since my diagnosis. As Christmas approached I packed a holiday thank you basket for the girls – my girls. Caramel corn, chocolate cookies, peppermint treats. Their kindness and unspoken empathy is truly a miracle to witness.

The options available are limited, you see. While my medical training forces me to consider efficacy and reduction in relapse rates, one can’t help but also think about the negatives. The side effects – the tangible things you have to live with day to day. Take your pick: diarrhea, nausea, hair thinning, rashes, kidney disease, contracting another autoimmune disorder. And these are the common ones.

Let’s not leave out PML. Progressive multifocal leukoencephalopathy, a rare and serious brain infection caused by the JC virus. “Symptoms of PML are diverse and may include progressive weakness on one side of the body, clumsiness, vision problems, confusion, and changes in thinking, personality, memory, and orientation. The progression of deficits can lead to severe disability or death,” as stated by the Food and Drug Administration (FDA). But that pretty woman advertising Tecfidera on the television, diving into swimming pools and attending the carnival, looks very happy.

As I sit watching the minutes tick over the next four hours, cradling my elbow as the steroids are pumped, this is what I think about. Keep injecting myself, or risk becoming a vegetable, all for the pure ease of swallowing a pill in the morning.

Steroids inherently make you feel overstimulated, however, I respectfully decline the muscle relaxant, as I know I have to drive myself home. It’s unreasonably warm for November and I roll down the windows. Florence is on, singing about I don’t even know what, but it hits me and I just cry. I cry for relief of pent up anger over the last 11 months, for fear of the unknown and lack of options coupled with thousands of decisions. Through green lights, and at stopped red lights I cry, because I don’t know what else to do.

It was some time after the insurance denial letter in the first week of January that I must have stopped caring. How could anyone decide that something that could make me better, was making me better, was no longer an option for me. My could-haves and should-haves got lumped in with my next-week and after-this-weekend excuses and time just flew.

Over the summer I got lazy with my injections. I stared at my body every morning and every night in the mirror. My hips, my inner thighs, my under arms– those lipoatrophy sites that look like cottage cheese.

So what is next? What are my options? What should I do? Questions I asked my neurologist. She laid out my options in her thick, Russian accent. Formal, direct, empathetic and concerned. She was visibly upset about another exacerbation – second one in less than 2 years. It was the first time I felt comforted by her and also like she had left the last heavy load for me to haul up the hill. It was, ultimately, my decision.

At 27, I worry about what I will make for dinner tonight. I worry about going blind as I stir the onions in the pan. I worry about the tingling in my left foot, or my right fingertips. About what I can afford to pay if my insurance company decides to continue to be assholes. I calculate my finances in my head, as I wash the dishes and the world feels heavy as it spins away from me.

To those of you who read this blog – thank you for taking the time. It means more than I could ever say and I appreciate you. Raising awareness is one of the best things I think anyone can do, and if this helps anyone, I’m grateful.

To those living with MS – keep fighting and stay strong. For the first time in the past 5 years since I heard the words multiple sclerosis – I am afraid of the unknown. Your strength keeps me going. Thank you.

“My bones are tired, but they’re done shaking. My heart is torn, but it’s done breaking. And my hope is set on things unseen. A light it has come to the darkest place of me.”

The Last Of It

“True stories seldom have endings. I don’t want a happy ending, I want more story.”

Frances Hardinge

 Endings make me sentimental. The end of a really good weekend. The end of an everything bagel, smeared with cream cheese from a farm. The last of the coffee on Sunday morning.

The finite space you find yourself in at the end of graduation. No more days speckled with class time, endless hours of reruns and long lunches with friends. They’ve moved home and the real world awaits you on Monday.

The end of her infectious laughter, echoing off the tall trees around the camp fire, filling the stars with light. The end of her unwavering team spirit, bleeding blue and white with a perfectly pitched tailgate; wrapped in a sweatshirt, cider and whiskey warming our stomachs. We keep her with us now, she does not end.

The end of another box of injections. I cautiously carry around 16k in my body every month. Don’t worry, the next box will arrive on the 3rd. Please leave it at the front desk, I won’t be home to sign for it. No signature required.

The last of the years he was absent. I measure them out while I count coffee spoons in the morning. He is the same. I am different, I tell myself standing on the kitchen tiles. The end of what we were seamlessly gives way to what we are.

The last of the Spanish red, evenly split between our glasses. The end of conversation and laughter. Catching up, pondering. Comfortable in the space we create. The sunset gives way to streetlights through the open window. Trolley cars pass. Until next time.

The end of innocence. My name on every bill, every statement. I own my life, my debt. Moving closer to thirty. Settling into myself. Looking for opportunities to grow. Making long term goals. Being an adult in the face of fading youth.

The end of days before I had MS. The end of days living with MS. The end of fatigue, of chasing sleep, of injections which make me itch and bleed. Maybe these days will come. Maybe I will see them. It is the thing that has no end.

Endings make me sentimental. What I know is that there is always a beginning that follows.

Not Work

This is the first of a series of guest posts on Join the voices and send your own guest post.


He was an anesthesiologist. She was an OR nurse.

He knew something was wrong. He understood it was MS, but before the official diagnosis, he made arrangements.

He bought disability insurance. A ton of it.

She told people that once they married, she quit her job and never worked again.

Ten years passed. Before MS, he built bookshelves as a hobby. After, she filled the shelves with books on tape. This was the early 1990s. No Internet. They listened to hundreds, maybe thousands of books. Fiction, history, biography. Humor, thrillers, horror. Abridged and unabridged.

The beagle nosed under the covers and lay along the length of his leg while the earphones cradled his head.

They traveled each summer to the beach and stayed through autumn. It was cooler there, less humid. He rode in ambulance transport. I was in college. I filled her car with spider plants and clothes and pet paraphernalia and medical equipment and plugged an audiobook in the tape deck for the ride. It was usually just two carloads, maybe three, back and forth in one day. No big deal. One carload was almost entirely spider plants; she would not leave them home for the summer. Spider plants are nearly indestructible: a palm-shaped burst, like fireworks, and long green and white leaves. The leaves look spiky, but they are smooth, pliable. At home they hung in every window; at the beach, they lined the wide arms of the porch.

Sometimes, before they arrived at the beach house, I painted. I scraped the exterior of the house and scrubbed off mold. I stood on a ladder in a bathing suit and shorts and drank iced tea. I painted the living room and dining room. I flipped through their audiobook catalogs, ordered The Odyssey, and listened to Homer while I painted the white fence outside.

They paid me, broke college student and all. But it was never work. When I trimmed the hedges, she didn’t want gentle, ornamental curves. She wanted me to prune ruthlessly, cutting the shrubs back to bare branches. They looked hideous. We howled with laughter.

But I understood what we were doing.

You see, working this way meant we only had to cut back the hedges once a year. Done.

Later, around 2001, my aunt became sick—complications from diabetes. A visiting nurse came to stay.

Eric had a feeding tube, a catheter, a fat beagle snuggled next to his leg. The visiting nurse was stunned by his condition.

Ten years in bed and… no bedsores?

I can see my Aunt Joan taking a drag on her cigarette and rolling her eyes at the silly nurse. Duh.

Joan never left him, not one night away, not until she went into the hospital. She never wanted to be anywhere else.

She never wanted to be anywhere else.

I don’t mean to sound stupid, to minimize how hard things were. Believe me, I can write about those things. And you? You can open up the book of your own days and years and find endless pages of fear and suffering, fury and frustration.

But my aunt couldn’t—wouldn’t—talk to me about that. I was a kid, the little girl who sat on her knee in the ocean. Now I was the kid who drove carloads of shit to the shore, drank all her iced tea, and spilled paint on the rug in that one place. Sometimes I forgot to rewind the books on tape before I gave them back.

We are all just pieces in the larger puzzle, right? It doesn’t mean I don’t see the big picture of Joan and Eric’s life.

I never worked again, Joan said.

Ten years. No bedsores, the visiting nurse said.

Just imagine it.

Today, though, I won’t speak for her. Only me.

All year long, we laughed at the hedges in the backyard. Branch by branch, their spindly arms sprouted and leafed until, I swear to God, they looked perfectly normal.

–Christine Flanagan

A Conversation with Myself

“I may not have gone where I intended to go, but I think I have ended up where I needed to be.”

Douglas Adams

Recently, I have been finding myself in the midst of many conversations revolving around the concept of growing up, or more precisely, how we have become grown ups. We talk of the grotesque idea of turning 28 soon, of being labeled millennial, of responsibilities and future plans, and financially planning for said future plans (what?). These topics used to overwhelm me, less so with each passing year, but nonetheless, the disillusioned idea of growing up and actually growing up are two very different things.

Over dinner and several glasses of wine, a good friend mentioned to me how much I have changed. From the girl she met when I was an undergrad in her class to the woman sharing a bottle of wine with her now. As I reflected on what she had said, I couldn’t help but agree with her. She further pondered the girl I was years ago, before I was diagnosed with MS, and the woman I am now, with MS. “What would you say to that girl?” she posed. I haven’t the faintest idea, but let’s give it a go.

Six or seven years ago, you would find me sitting in an English elective, near the back of the class with my head down and notepad out, furiously scribbling down the professor’s words, a professor who would unknowingly briefly alter my direction. At that point in my educational career, I was still extremely quiet, shy and adversely opposed to participating in class discussions or raising my hand voluntarily. This did not seem to bother her much as she seemed content to interact with the few students willing to participate and debate with her. Fine with me. I sat, I listened, I observed. I was a good student in these respects, but beyond the bounds of my desk, I was ill-equipped and unsure of myself.

I had changed my major from pharmacy to physical therapy, not entirely sure what that would mean for me. Youth tends to be very near-sighted at best; it’s generally hard to look past Saturday nights. I was taking as many English courses as I could because that’s where I felt at home, it’s what I knew. When I was little, my parents had to put a timer on my bedside light to ensure I would eventually go to sleep and stop reading. So many words, never enough time.

I sought advice from the professor I had never spoken to. Youth also tends to be incredibly impulsive, and the intangible prospect of switching majors entirely to pursue a Literature degree was so enticing, my impulses eventually collapsed in on themselves, exhausted from the mere idea. I could not bring myself to switch majors half way through my program, so I settled on a minor in Literature. Enough for me to keep writing, to keep reading, indulge in three independent studies and quell my dissatisfaction.

I was fumbling through my very early twenties, afraid of all choices and decisions, which could irrevocably screw up the rest of my life and I was lost. I threw myself into physical therapy after making the agonizing decision to stay. It was never that I disliked PT, I actually loved it, I enjoy going to work every day and I love my patients. The problem was there were always, simultaneously, so many things I wanted. I wanted both, which was ultimately the root of my dissatisfaction. Meeting that particular professor, settling on a minor, gave me access to both.

Thinking back, if I had switched, I would have known nothing about MS when I was diagnosed. I doubt I would have even picked up on my first symptoms as being abnormal. I would not be writing this blog, that’s for sure. I would not be teaching or giving a guest lecture in front of a room full of students.

So what would I say to her, to a young and impressionable me?

I would tell her to stay in physical therapy, but to transfer to Temple for the state tuition, your future self may not be as angry with you. I would tell her to write more, maybe now it wouldn’t be so damn difficult for you to put words on a page. I would tell her to end that long distance relationship much sooner; you will be less confused. I would tell her it’s okay to be an introvert, you will find your voice eventually and it will be a strong one. I would tell her it’s okay to be impulsive and emotional, it will allow you to connect with people. To stop putting up walls, you can’t help anybody by doing that. You will take big risks, but the rewards will be incomparable. I would tell her that there are no real grown ups, just older people faking it – you will be fine.

I wouldn’t tell her about L, or that she will end up teaching and loving it. Telling her would just scare her away from one day enjoying them, pursuing them and letting herself fall in love. I wouldn’t tell her about being diagnosed with MS – she will have to figure that one out for herself. I would tell her though, that as a physical therapist she will be well equipped for the journey.

Chaos and Clichés

“It’s all messy: The hair. The bed. The words. The heart. Life.”

William Leal

 I cannot find our box of Q-tips. I could not find the wine opener last night. I’m not entirely sure all of my clothes survived the move. Ridiculous – much akin to losing socks to the abyss of the dryer. The office has been designated the official just-put-it-in-there-people-are-coming-over-and-we-haven’t-unpacked-these-twenty-boxes-yet-room. Every day that passes the less I seem to care that they may never be unpacked, their contents cozily tucked away in their prospective places in our new home. What do you mean you put this on that nice shelf over there instead of on the floor in this box where it’s supposed to be?

I have been particularly indolent of late with taking my weekly injections. Monday, Wednesday, Friday has turned into “Oops!” Tuesday morning, Thursday evening, Saturday/Sunday? It’s all a bit vague. I blame it on the heat wave we’ve been enduring which has irrevocably turned into just plain summer. I feel heavy. I feel a hazy tingle in my feet and legs on my walk home from work. It ebbs off just as I plant myself on the couch and I forget about it until the next afternoon.

There was a two-week span of missed muay thai kickboxing classes, perhaps unavoidable in the midst of moving and starting a new job; however, it makes me feel centered and grounded and I pushed it aside, excuse after excuse.

There is a box of mail somewhere hoarding invitations and overdue medical bills and RSVP dates and I throw my hands up at the thought of them sitting silently mocking me and my utter lack of organization or futile attempts to appear organized. Everything feels out of focus lately, and oddly settled in the unsettled.

The disarray of our office comes to a head at the printer – which is hooked up and working in order to print study materials for a certification exam I am taking in August. Somehow in the midst of chaos, there always seems to be something at the forefront demanding immediate attention, leaving the rest to fall to the wayside, forgotten and building up resentment.

But what else is there to cling to in the face of the unknown? In the depths of mess and confusion, we cling to what we know, or what is tangible at minimum.

Coincidentally enough, or entirely purposeful actually, the exam I am studying for is the multiple sclerosis certified specialist examination. Beating a dead horse…or something like that. Luck favors the prepared…I could keep going.

I can’t tell you where our Q-tips are, or where the wine opener is; however, I can tell you that 50% of those living with relapsing-remitting MS will progress to secondary-progressive MS after 10 years, 90% after 25 years. I can tell you that 50% of those living with MS experience chronic pain, bladder dysfunction and cognitive dysfunction in the forms of memory and processing skills. I can tell you that there are currently no disease-modifying medications for primary-progressive MS and that your risk for relapse decreases substantially while you are pregnant, only to then increase proportionally in the 6 months after you give birth. Double edged sword.

I can tell you that our dinner party for 4 last evening turned into game night for 8, despite all the unpacked boxes; and that we did find the wine opener – in the form of a screw and a pair of pliers. I returned to my kickboxing classes, albeit wobbly and weak, but renewed. I fervently found my keyboard again, and the blog that has connected my story with others. Finding strength and peace in our community, our porch family and the family at 8 limbs academy – constants over the past few months of chaos coming into sharp focus as the dust begins to settle.

Life is messy, but I don’t know how else I would rather get out of bed in the morning. Can you imagine if everything was perfect? How boring that would be.