Thursday, April 15, 2010

Two Years And Counting: The Insight That Comes From Illness

On Saturday, my blog turns two! I can’t believe that I started this blog two years ago, just a week after receiving my diagnoses of lupus and rheumatoid arthritis. Since then so much has happened. Solu-Medrol infusions, my first inpatient adventure. I guess pretty much the usual stuff as far as these illnesses are concerned.

But other things have started happening in my life, too. I’m not sure when it happened, but these illnesses lost a bit of the primacy they had in my life. And I began to venture out in search of other things; love, romance, figuring out the things in life that really make me happy. And I’m not sure I would have been so keen to start such adventures if it weren’t for these illnesses.

I’ve come to realize that while illness made me doubt a lot about myself, there were parts of me that I must have been building up unknowingly. I don’t think it’s an accident that I really didn’t date much pre-illness. I think there were parts of myself that I needed to be okay with first. And I guess, in a roundabout way, I became okay with them.

For a while, I felt like I had given up on G-d, and didn’t know what role I wanted religion, specifically Judaism, to play in my life. I realize now that I did not turn away from G-d. In every morning that I wake up and persevere against illness, I am believing in something deeper than myself. This may not be the way you or my friends or my parents may conceptualize of G-d. They may see G-d as a more abstract and untouchable notion. But if I am going to believe in something, I have to believe in myself, and the journey that illness has taken me on, however fraught with difficulties it may be.

I had given up on the idea that life could be good, that I could be okay, really okay, in the face of illness. And it’s hard, for sure. There are days when I don’t want to get of bed and face the world. We all have our moments. And I’m learning to absolutely cherish and be thankful for the good times, when there is joy and little pain and I am happy.

The title of this blog is based on the song, “Closer To Myself”, by Kendall Payne. And I feel that this year, more than anything, I’ve done just that: “Digging deep, I feel my conscience burn/ I need to know who and what I am […]/ I’ve been everybody else now I wanna be/ Something closer to myself […]”

I think I’ve always been one of those people who wants to make a difference in the world. But illness has made me realize that before I can help the world, I have to help myself. I have to heal myself, if not physically, at least emotionally. And I certainly have a long way to go. I still have a lot of issues regarding my last two relationships, trying to understand how I let things get so out of hand. How I allowed myself to be treated in ways that I didn’t deserve. But I’m beginning to realize that despite illness, I am a good, worthy person.

I got tired of always being the one on the other side of the street when everyone else had crossed, even when the sign said “don’t walk”. When you live on what you think is the safe side, and that doesn’t work, it’s easy to move to risk and realize that, that doesn’t always pan out either. Illness has taught me that life is a constant balancing act.

And I’ve met someone who has changed my life. Talking to him on the phone or getting to see him is the best part of my day. I am a better person because he is in my life.

And there is somewhat of a disturbing realization. I’ve asked myself a lot lately whether I would change the way things are if I could. If there was a cure tomorrow, would I embrace it? Honestly, I’m not sure I would. Because I have to wonder the person I would be without illness. And even if a cure were found tomorrow, unless the offer was to reverse all of the time that has already been impacted by illness, I’m not sure that it would matter. I have been forever changed.

I was coasting through life before, not really stopping to look around and take in the minutiae that was happening around me. I enjoy being captivated by water about to boil, and watching long enough to prove that even if you watch a pot, it will eventually boil. I enjoy nature. I’m learning to embrace life. My life. Illness included.

I think I was living my life with a “today for you, tomorrow for me” attitude. I was living for other people. I wasn’t living for myself. But when you’re thrown into a situation where, in part, your survival relies on you putting yourself first, that equation suddenly changes and becomes “today for me, tomorrow for you”. And I’ve come to realize that there will be many tomorrows. Everything I don’t finish today will be there tomorrow. And if the people in my life are truly loving and supportive, they’ll understand this and be content with the choices I’ve made.

I don’t feel quite as hopeless as I used to feel. I can now look in the mirror and recognize the person staring back at me. Thinking back, it’s easy to not want to believe that I could have felt so down. But I was trying to figure myself out, and then illness came into the picture, and everything went off kilter.

I am so grateful for the community that has been created via my blog. I am so thankful for the support that you all have provided me. And I am so happy that you have been here to celebrate the good things and help get me through the bad. I don’t know what I would do without you. This blog wouldn’t be half of what it is without all of you, and I thank you for giving me a reason to keep soldiering on, on this crazy journey. Thanks for two eventful years. Here’s to hoping there are many more years to come!


  1. i have been following ur blog for a while now...n i can feel that every word u write comes straight from ur heart! i can completely relate to all that u have said....i too have come from not having a single day to look forward to, to finally be able to cherish everything that i have ....and yes, we do need to focus on ourselves "today", so that we can take care of others "tomorrow".
    wish u all the love and happiness in the world-

  2. What an amazing and beautiful post!! You have found contentment in who you are and that's the only true contentment.

    Visiting from chronicbabe
    Renee (aka Shalunya)

  3. This is a really beautiful post. Writing it down (in our case blogging about it), really allows us to see how much we have grown since our diagnoses. There are so many doubts in the begining, but we eventually find our comfort zones, always realizing that we playing a balancing act. Happy two year anniversary to your blogging.

  4. Lesley, congrats on your two year anniversary! I have been following you blog for a few months now and have enjoyed the thoughtful and introspective nature of your posts. So often you seem to put things into words that I have have either struggled with in the past(or present) while trying to adapt to the ever changing life with Lupus.

    Thanks again for writing! And, you're right- there is so much to be thankful for and so much in life to celebrate despite living with chronic illnesses.


  5. I really want to thank you for this post. After 5 years in remission, I'd kind of forgotten what it was like. I don't think I really thought about the lupus or its implications... Now that I'm facing a major flare up though, I have been thinking about it a lot. I've definitely been pretty depressed about, and I've been thinking a lot about it's impact not only on my life (both day-to-day and as a long term life goals way) but also on how it's affected my view of the world and how i interact with it. I've been cycling in and out of states of hopefulness and then depression and hopelessness... but this post really helped me see that with time I can reach a place where I'm comfortable with the disease and it's impact on my life. Thank you for sharing this beautiful post.

  6. Lovely post.

    I've often asked myself, if I could live my life over again without illness, would I do it? I think the answer is no. I've learned too much, and I like who I am - and in part, that's because of illness.

    Thanks for sharing so much of yourself through your blog. I look forward to learning even more in the years to come.

  7. I am so happy to see you living YOUR life fully. Beautiful post.

  8. You write some VERY beautiful posts :).

    I'm with you, I honestly don't know who I would be if you stripped me of illness after all of this time. In a lot of ways it has taught me lessons I would have never learned this early on in life. I'm just glad to have inspiring people such as yourself that I can look to and read about :)

  9. Hi there :) I just learned about your blog from ChronicBabe's blog carnival (I'm also on there as the one they mention is "in luvvvv"). I just love this post and it seems like we really get each other. Many of the thoughts you put so beautifully have run through my head and your writing makes me feel very understood. I've even struggled with my relationship to Judaism in similar ways.

    I think that must be your purpose, right? To be an inspiration for others. Because you sure are. This is also the reason I started my blog last month. If I reach out and connect with just one person living with chronic illness and pain, then it will be worth it. I have lived with a severe arthritis in every joint called "Spondylitis" and now chronic migraines. Please check out my blog sometime - I'd be honored if you followed it.