Wednesday, January 19, 2011

Note To Self: Dream At All Costs

I've always been told I could do anything, as long as I worked hard and believed in my goals (thank you, mom and dad). Because of this, I've always had a head full of dreams and, when I began my masters in social work, it was no exception. I was proud of being accepted into Columbia, moving into Manhattan on my own, and learning to navigate the city. I'd identified my calling and would be putting my experiences to use by helping kids and families also coping with illness. It all seemed so clear. But when Humira stopped working last year, my foundation was rocked. Pain and illness didn't ask permission, nor did it care what my plans were. Never before had I felt so uncertain, scared, or dependent on other people. Being in that position changed me.

Just like many people living with chronic illness, I feel frustrated that I'll need to be connected to the medical community for the foreseeable future.  I'm much more careful with myself now at age 24; something that's hard to swallow when my friends' bodies are at their peaks. Now that my pain is under control, I do feel stronger. I'm grateful for each moment I'm not suffering and I'm gradually growing more hopeful every day. Deep down, though, I'm terrified that if my new medication fails or my disease takes a turn, I'll be right back to square one. So, while I've always been a dreamer, right now it's hard to entirely believe in those dreams. I fear the disappointment if my body doesn't keep up. As a future social worker, I'm nervous to have clients who depend on me, only to let them down when illness knocks me out. 

What I've realized, though, is that - fear or no fear - I have to keep dreaming and believing that, even if social work isn't possible, something else will be. This is a central part of my New Year's resolution. I have to remember how passionate I've always felt about committing my life to service; that my life really does have a distinct purpose. If I lose sight of these things, illness will have robbed me of my heart. In former posts, I've said I'd give anything to get back to where I was before last year, but today I'm taking that back. I can't erase the painful memories, nor can I reclaim the lost days. But I can move on. I can stand up to fear and capitalize on the second chance I've been given. I don't wish to go back to "where I was before" because it brought me to who I am - a person I'm proud to be.

If someone told me two years ago about the duration and severity of the pain I'd experience, I wouldn't have believed I'd still be standing. But I am standing and, more than that, my dreams are returning. If you're living with illness, you need to remember something: you, my friend, are a force to be reckoned with. While it's hard to remember when we're at our worst, we can and will make it through. Furthermore, we'll have new wisdom and strength at the other end that will inspire others. So don't you ever give up...and neither will I. Never believe you're alone in this fight and hold on to yourself and to your dreams. This world will be better for it.


  1. Maya, This is such a beautiful post. I have every faith in the world that you will find your way. AS has taught me so many things about how best to navigate our lives in a more compassionate, tolerant, and loving way. You, my friend, have learned it at such a young age - and are already putting your heart and love into what you do. Thank you! Jenna

  2. Beautiful post, thank you! Hope Morningside Heights is treating you well!

  3. I always read your posts but I hardly ever remember to comment. But I couldn't let that happen with this one because you really should know how beautiful it is, and how beautiful you are. You make things much easier for me - if I don't feel up to dreaming I can always just think of you!

  4. Maya –

    Chronic pain and chronic illness change us – no doubt. There is no way you can be pain-free all the time but there is no reason for you to give up an anything – you have an amazing spirit and you are learning daily how to live with your conditions. It is a practiced\ and you learn by trial and error. We are all terrified – don’t let those fears dictate your future. Chronic illness and pain does not destroy dreams or plans – it only changes the path and journey. So many work fulltime with RA, AS, MS, Fibro – you will be one of those and you will surprise even in your weakest moments. You will learn how to do it so don’t doubt that and don’t worry too much about it.

    And you are absolutely right – fear or no fear – you have to keep dreaming and believing because you will be surprised what hope can give you. For me, RA and Fibro have led me to be so much better as a mother, daughter, sister and friend, and it has also led me to advocacy for RA and Fibro sufferers.

    “If someone told me two years ago about the duration and severity of the pain I'd experience, I wouldn't have believed I'd still be standing.” Funny – I know exactly what you are saying and feeling as you typed those words. Some great advice. Know this Maya - you are a fighter and a survivor and you will surprise yourself when you least expect it.

  5. just what i needed to read today. i thank God for you; you're my silver lining.

    love & hope,

  6. Maya,
    I think this is my very favorite post you have written and should be forwarded to each of us when we are deep in a flare. I love it.

  7. What a brilliant post My, you know how to express so well the fears that come with chronic illness. Wondering if our bodies can keep up with our dreams is such a real fear, even if we are so determined.
    Thanks so much for writing something as important as this; what a role model you are!
    Kate xxx

  8. I can't thank you all enough for your words - I will cherish these comments forever. Also, please know that you guys make this struggle worthwhile' each of you has given me tremendous strength in darker days. Thank you for being part of my journey - I'm so profoundly lucky to know each of you. Love always...

  9. Beautiful post Maya! Truly inspirational!! Wishing you all the best!!

  10. Lovely words. Just to let you know - I'm a 35-year-old school librarian and have had spondylitis for the past 5 years. Humira has kept me going, but it's also losing effectiveness for me. I sometimes work up to 12 hours a day, and many days, I feel I'm hardly coherent. Still, I love the students - I love the teachers. I'm fighting, and with God's help - and if it's his will, I'll keep teaching. If one day I can't, I know I'll do something else for him. :)

  11. Amanda: Thank you for all your support on here and through facebook. You're helping me get the word out about Loving With Chronic Illness. I'm wishing you the best, too - feel well!

    Lindy: Thank you for your inspiring comment - it's always comforting to hear of others who are doing what makes them happpy and fulfilled while still living with illness. I love your optimism and I hope you'll keep reading xoxo

  12. Maya, good for you.

    I think I find your posts helpful from a different angle, perhaps, than some other people do... you do write beautifully and express lovely thoughts, but I've always been fairly cynical and then ten years of motherhood and three years in pain have only hardened that outer shell. I can read *dozens* of Blue Mountain cards and watch *hundreds* of Hallmark commercials and never shed a single tear.

    (Which, by the way, should not at all be viewed as a brag, because it's not; I would love to be more vulnerable and in touch with hope and dreams and so on, and it's just not happening. Alas.)

    Anyway... I think what helps for me is to remember that you're only ten years behind me, and 24 feels like it was just a few minutes ago. It just helps put my life into perspective: nothing lasts as long as you fear - or hope - that it will, damn near anything is survivable, and the people that truly love you will hang in there and continue to do so no matter what sides of yourself you show to them.

    Good lessons, I think. And on my better days, I can remember them. ;)

    (And, I do still have your interview-email... I've had such a hard go of it this past year and introspection, at any level more than a millimeter deep, just about floors me. I will answer someday, I promise.)

  13. Maya -- very happy to have found your blog today. Your positivity and persistence (or what I've seen of it in the three posts I've read for now...) is heartwarming and encouraging. The title of this post has been my motto through my chornic illness, as I'm sure it is yours. Kindest regards.

  14. It really doesn’t matter how old you are. Setbacks are setbacks. It would be nice that if we didn’t have to be so heavily apart of the medical community but that is not our reality. You are going into a career that will withstand your setbacks. I left the legal field and went to work for a realty company because the stress had its effects on my health. I am a lot less stressed than I was in the past and it has been a difference in keeping my RA and fibro symptoms at bay. You are absolutely correct in that you can’t lose sight of your dreams. My dreams changed when RA and fibro came into my life. If not for my failing health, I would be done with law school by now but that didn’t happen. My diagnoses forced me to rethink my priorities and that I did. Know that if things change, accepting it and moving forward from it is your best defense. Keep standing tall, Maya. You will get there and you will find strength you never thought you had.

  15. Hi Maya - you have so much to be proud of! And the most beautiful person you could turn out to be in life is YOU! Purely and simply YOU. I am 46 years old - have Lupus, Sjogren's, RA and SA - a nice autoimmune resume! I went from 30+ years of running (mostly marathons later in life) and a wonderful career in social services, working full-time, raising seven daughters and enjoying many, many hobbies (painting, canoeing, climbing) being completely disabled in 2009. But let me tell you my dear, it's in losing these parts of my life that I have gained the greatest gift of all - ME. Would I really like to be well again...YOU BET!! Would I give up who I have become and the happiness and peace that fills my every day - NO WAY!
    I had a discussion the other day with someone who posted that if we don't have our health, we have nothing. Oh my goodness... did I jump on that one!! What a sad statement for all the millions of people that suffer every day. We may not have perfect bodies, and we may have a lot of pain - but what we choose to think is ours! And we can always choose joy - always.
    Blessings to you on this amazing journey. Be well, and be compassionate with yourself.