Multiple Sclerosis: The First Two Years.

What I remember most about the first two years of MS is the hunger. I remember lying flat on my mattress, hungry. Close your eyes, go back to sleep.

I’m hungry.

I’m tired. No: I’m decimated. In this game of rock-paper-scissors, tired always wins out over hungry. I close my eyes. I drift in and out of sleep. Four hours pass. I wake up and think: I’m so hungry. Sleep. Eight hours. Still hungry. More sleep. Twelve hours. So fucking hungry. Knocked out again. Sixteen hours. Twenty hours. Sometimes twenty-four or more. Still hungry. Still fucking hungry.

Each time I awake I briefly contemplate getting up, foraging for something to eat. But the walk through the living room, past the bathroom, into the kitchen is long, and I am weak. The thought of opening the fridge or a cabinet, of microwaving something, is beyond me. And so I sleep.

I cry.

I remember crying because I was so fucking hungry but unable to get up and feed myself. I remember lying flat, limbs extended. Limp as a puppy, sobbing.

Sometimes I could make it to the fridge. I remember eating bread. Rolls. Holding onto the walls for support. Using my apartment as a walker.

I remember that when the disease hit it was nuclear. It obliterated me. I remember dreaming about 9/11 because my body identified with the collapse of those twin towers.

Whenever I was trying to do something difficult that required an extensive amount of concentration—like traverse an apartment, open a fridge, or take a piss—I would listen to my own breathing. To the silence.

I remember a stillness, a quietness that I’d almost never felt before and have almost never felt since (except on really bad days when, in class, I find myself again seeking out a wall to strategically hold onto in order to create the illusion that I’m not about to collapse–all of course while continuing to seamlessly deliver the day’s lecture on the present subjunctive, or vocabulary pertaining to zoo animals).

Crossing a street can be a victory. Taking a piss can be victory. I count my breaths. I listen.

I remember that for the longest time no human being touched me for any reason other than medical intervention. Nurses grasped my arms to insert needles or tie tourniquets. Doctors placed a firm hand on my back as I failed and failed and failed my Romberg’s test. Imaging techs gently guided my head into place for my 2 to 3 hour long MRI scans. The only touch I experienced was being strapped, tied, punctured, swabbed, infused, and physically manipulated. The worst is when they deliberately induce muscle spasms. I always beg for them not to deliberately induce muscle spasms. Please, please don’t do that thing. You know—that thing.

I remember having to do pulse steroids every single month for almost a year—along with thrice-weekly injections of Rebif—just to achieve something remotely like “remission.” The drugs demolished my immune system, leaving me with the blood cell counts of someone HIV+.

I remember being too weak to stand up after steroid infusions. Listen, I get 1,000mg of Solumedrol in 500ml of saline, — an assertion on my part which would inevitably cause the nurses to protest because “That’s more saline than normal. Why do you get so much saline?”

If you don’t give me 500ml of saline and infuse slowly over the course of 2 hours I will throw up.

“We usually infuse this in 30-40 minutes.”

Fine, then I’ll throw up.

“Fine. We’ll do it your way then.”


They did it my way.

I remember leaving Brigham and Women’s at rush hour on a weekday and the #66 bus being jam-packed and me with a bandaged arm, glassy eyes, and an inability to stand and nobody—nobody—would offer me a seat. I remember sitting on the floor of the bus because I could not stand. I became stubborn in my willingness to sit down on floors, on the ground. Whenever I was out in public and became too fatigued to stand, I would simply sit down—wherever I was. Right there. Sit.

No, I don’t care who is looking. No, I don’t care what you think. I am sitting. Right now, right here, what I am doing is sitting, and I will get up when I am good and ready, and if you want to leave me here then go, fuck you, I don’t care.

I just need a minute. I just need an hour. A day. A few days. Just a week. A month. A couple of years, actually. Be right back.

Just need to get my bearings.

Just need this wall here. This is a good, solid wall. I love this wall. It’s not going anywhere, and I can lean on it. Holy shit: this wall is amazing. This wall is here for me. I love you, wall. Wall, I love you.

Whenever I would receive steroid infusions the only thing I could eat for days was Vietnamese food from Lês in Harvard Square. Pho chay, specifically.

I need limes from the grocery store. I need Vietnamese food and I need limes. I need, like, 40 limes. I need to get them before the steroid crash that’s coming in a few hours. Before it’s too late. I have to go, now, to the grocery store and buy like $40 worth of limes. Right now. Don’t bother me. I am on a mission. Don’t text me anymore because I need limes, OK? Goodbye. I need limes.

Steroids have a half-life of around 18-26 hours. If you’ve been infused with high doses for days in a row, your adrenal glands stop producing cortisol. Houston, this is a problem. I remember the crashes—the sweats, the muscle weakness, the inability to stand up (more so than usual), the bone pain.

This is why I need Vietnamese food and I need limes, and I need them now, before it’s too late.

I remember that I was left for dead for 2 years. Left for dead by everyone who was supposed to be there. Left for dead like an injured racehorse ready to be shot. I remember seriously weighing the hypothesis that perhaps I had already died and this was why I was being kept separate from the living. Why it seemed that no one could see me anymore. Why my ontological status seemed to have changed. I lay flat. Breathed. Waited. And sometimes, yes, I cried.




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139 Responses to Multiple Sclerosis: The First Two Years.

  1. Pingback: Shared from WordPress | A Nurse's Notes

  2. Thank you for sharing.

  3. navasolanature says:

    Thanks for a very powerfully written and honest account of living with MS. I have a friend who suffers and this helps understand the inner turmoil and deep frustration.

    • Honestly my pain came from being (literally) abandoned when I could barely feed myself. If your friend does not have family that’s present/supportive, please consider being there in case s/he needs someone.

      • navasolanature says:

        Thankfully she does have some family and friends but maybe not always fully understanding her frustration. I live a long way from her now but will see her next week. Hope you get the support you need.

    • Thank you. I am doing quite well now, actually. 🙂

  4. soulwellhk says:

    Reblogged this on The Soul Essence and commented:
    Send you love, thx your valuable sharing.
    It is moving and touching.
    You inspire me very much and i’d like to share this to others, to inspire more people to love themselves and cherish every breath.

  5. My mother-in-law has MS, and I knew she got tired easily and had trouble concentrating, but I never knew it was like this. Thank you for being so honest and helping me understand a little better.

    • To be fair, this is my individual experience and may not represent that of others with MS. I am glad you enjoyed my piece, but I’d encourage you to talk to your mother in law if you feel comfortable. Her experience (and needs) may be totally different from mine.

  6. eem2412eem says:

    Me diagnosticaron E.M. hace 5 años, pero creo que el primer brote me dió hace 7 años. Bueno, cada caso es diferente, tenemos en común el cansancio, la concetración y el hormigueo que no cesan ni un minuto al dia. A mi ya me parece que es lo normal, pero hay momentos que me desespero y pienso que hay cosas peores, para aliviarme, pero cada vez soy más consciente que necesito ayuda y es un circulo sin fin.
    No lo habia pensado, pero el hambre constante, también la tengo yo, aunque estoy bastante delgada.
    Bueno, me voy al sofá un ratito, que luego me toca inyectarme el Betaferon.
    Hace poco me trataron con acupuntura (una sesión gratis, que me dió una buena mujer y ahora amiga) y estuve unos minutos sin el hormigueo y salí con los ánimos mejores, pero me ha durado poco, lo de los ánimos me refiero, pues las circunstancias no me acompañan (estoy en el paro…).
    Esta tarde he salido y queria ser la de siempre, como antés, y aparentemente, doy el pego, pues soy muy “chula”, pero a mi no me puedo engañar y aunque lo intento creo que a mi madre tampoco (al menos hoy). Estas conversaciones entre mi madre y yo, son sólo con los ojos y al no usar palabras, no mienten.
    Bueno, gracias por compartir tus sentimientos. Es el primer dia que entro en WordPress, y creo que voy a hacer mi blog, sobre E.M. , pues es de lo que más puedo aportar y tu me entiendes bien, pues hace mucha falta liberar y compartir. ¡Qué duermes bien!

  7. eem2412eem says:

    No sé porque algunas palabras han salido en Mayuscula, si yo no las he escrito así. Y me la diagnosticaron hace 5 años (no 5 Jahr). Bueno al menos me ha hecho reir ….

    • Não te preocupes. Entendo o que queres dizer. (Leio espanhol sem problemas, mas tipicamente respondo em português, pois o meu espanhol escrito quase não existe!) Muito obrigada pelos teus comentários aqui. Um abraço, V.

  8. eem2412eem says:

    Jahr = Years

  9. My heart goes out to you. I had always been the one in my huge family and large circles of friends to be there, to do for others to help to counsel to comfort. I had had people live in my house more times than not, I’d had two other families squashed into my little house with myself and my children sleeping on a mattress in a dining room to help others, I’d had 22 people Christmas dinners costing me hundreds of pounds and days of prep where nobody stayed to help do the dishes after. I had prevented people having their children taken into care by supporting them, I had cared for new born nephews when sisters had post natal depression, managing my own child/children and a full time job and my single parenthood. Then one day I collapsed on the way to work. I was 42 and had never been ill in all of my adulthood. I had never asked a soul for anything. I had a double Pulmonary Embolism and later found an undiagnosed DVT in my right calf to be the source. I came round in the emergency room and was told I was seriously unwell and lucky to be alive. I asked if I could make a call to ensure my kids were picked up from school and told what was happening. They were 9 and 15. My sister said “NO” a plain and simple “NO”. Then neglected to tell any of the family of my plight. My ex partner was the one who helped that day. I felt that if my family didn’t want to help there was no one else to turn to. My daughter, 15 and I hatched a plan that evening that no one should know they were alone at home because if they were found to be they would be taken into care. I rushed myself out of hospital in 3 days, very sick and self injecting all kinds of drugs to keep me alive but frantic with worry about my kids being alone without me for the first time ever. Nobody called them to see if they were OK, my work called once to see if I’d be back by the end of the week as I was working on a project they needed to be finished. I realised then that nobody cared about us, i could cope with nobody caring about me, but to not even call my kids and say “do you need anything?” it was unforgiveable and that was the day I became an orphan and an only child, my dad had already passed and would never have allowed that to happen, he had been my family and he was gone. My friends list was thinned to one and that was that. I feel your pain, I feel that sense of WTF? Where did everyone go? I didn’t cry but I still 5 years later want to break some faces, I never get angry but that made me angry beyond belief. Of course since then they all turned on me and tell all manner of stories about how selfish, stubborn, controlling and horrible I was and how everyone’s better off without me that makes me laugh. I’m not bitter, I’m happier without them, I hadn’t realised what a mill stone they were around my neck BUT that feeling of abandonment I know well and my heart goes out to you.

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