Wednesday, April 6, 2011

The Evolution Of Optimism & Unconditional Love

April showers bring May flowers, but for someone living with arthritis, they can also bring pain. Today I'm really hurting and, truthfully, I'm just sick and tired of feeling sick and tired.

...There! I said it.

I can't help but let the word "unfair" creep into my mind every so often because really, it isn't fair. It isn't fair that lately I'm fatigued every moment of every day or that I live with constant pain (yes it's much better than last year, but it's still always there). It isn't fair that I can't do everything my friends can do - attend every party, make weekend trips to see one another, or even set plans for tomorrow. Fairness has no place in chronic illness.

A few years ago, I could never have said those words out loud. While I'm a positive person at heart, I embraced optimism as a way of life since my diagnosis at age 15. Initially, though, it was for the wrong reasons and this optimism was a product of fear. If I didn't keep an upbeat attitude about this disease, who on earth would want to be around me? Sadly, I believed that having Spondylitis was somehow an automatic "strike against me." For years - and really up until I graduated from Colby - I maintained this forced optimism and it became both exhausting and detrimental.

During my sophomore and junior year of college, I had been dating a guy for two years. I still remember a conversation I once overheard between him and his mother while they thought I was still sleeping. Even though I was in the midst of a flare-up, I had driven up to Connecticut to visit him. After several hours in the car, I was less than enthusiastic about going to a party the night I arrived (something that had been suggested in front of the whole family). The following morning, my boyfriend's mother cornered him in the kitchen and whispered, "After last night, I'm just worried that Maya is going to hold you back. Do you really want to be with someone who is sick?" He apparently agreed and I was dumped just weeks before our senior year of college. When I  couldn't be that same optimistic version of myself, I was clearly seen as "damaged goods." Understandably, this fed into that same insecurity I had carried around since my diagnosis. At that point, I genuinely felt there was nobody who would stick it out when things got hard.

My senior year was also filled with many friends who didn't understand. I lived with five girls that year, but only one seemed to truly care about what I was dealing with. She has always wanted health and my happiness and I'm very grateful she is still in my life. However, there were also roommates who genuinely didn't believe that my disease was real. They openly stated that my pain was an "exaggeration." As someone who spent years in "hiding", it took a great deal of courage to be open about my health and, while I didn't need validation to know that Spondylitis was very real, having "friends" deny my suffering was devastating. My college was 8 hours from my family and I felt more alone than ever.

Vicki and Palmer are two of the girls that "took me in" that year when I couldn't live in my own apartment. They wouldn't let me do any dishes because they knew it hurt me to lean over a sink.  If standing around at a party was too much for me, they were more than happy to skip it and watch movies on the couch. What really mattered to them was being together. Instead of having to cautiously bring up my health status like I had with so many past relationships, they asked how I was feeling. Even now, when we're states apart, they don't let a week go by without checking in. Occasionally I'll withhold medical details to save them from worry, but if they find out, I'm jokingly scolded and promptly reminded that "we're in this together." No matter how bad it's gotten, they've stuck by me and I will forever treasure their place in my life; their unconditional love.

Although my friendships were squared away, I still believed there was no romantic match for me out there. But then came John.  I always knew that he was special (even at age 16), but when I immediately felt comfortable enough to discuss my health with him,  I realized just how unique he was. He was deeply empathetic and his only negative feelings were ones of regret for not being there during previous flare ups. After one 6 hour conversation in which I had never felt so understood by another person, I remember falling to my knees and just crying from sheer joy and disbelief. Over the past 3 years, I've experienced an entirely different level of comfort, friendship, and love, knowing I could always be myself around John. We've been through the best of times and the worst of times, but so far we've only emerged stronger for it. 
Having found the friends and the boyfriend who mean the world to me, you'd think I could just sit back and enjoy the ride. While I believed in my heart that they were different, it took many hours in therapy to work through my anxieties and fear of losing them. What I came to understand was that I am not my disease; I am so much more than that. I'm someone with many strengths who has much more to offer the people in my life than my stamina. With this in mind, my optimism was no longer a necessity or a defense mechanism; instead I reclaimed it as a tool to benefit  myself and those I love.


cha-cha." -Robert Brault


  1. Very well written. I need to take on your inspiring attitude!

  2. Bravo Maya! You are such an inspiration.

  3. quite powerful. thank you for the unconditional love you have shown me. xoxo

  4. a burden to my in-lawsApril 07, 2011

    "After last night, I'm just worried that Maya is going to hold you back. Do you really want to be with someone who is sick?"--brings back memories of my in-laws telling my husband that before we got married and they were not very accepting of me.

  5. Thank you so much for all the encouraging words. I'm glad this post meant something to you guys and resonated in some way. It wasn't the easiest one to write, but it was important to reflect on how I got where i am today.

  6. Maya,
    Your writing always touches my heart & I am so sorry for your pain but thankful for the love & support from your family, John & your special truly are so much more than your disease.
    Love you,

  7. I love you too Meryl. Thank you so much for being in my life and for your sweet words. You are so special.

  8. Hi Maya,
    I'm so glad I came across your blog! I am in my 30s living with multiple autoimmune diseases that affect my nerves, joints, and muscles, causing pain and fatigue, and after just reading a few of your posts, I already feel inspired to be more optimistic! You have so beautifully put to words what so many people suffer through day after day.
    I am so glad you have found the support you need. Getting sick at such a young age seems so devastating, you show incredible strength, more than people much older could even muster.
    I look forward to keeping up with you!

  9. Jen: I'm so thrilled that you found your way to my blog and thank you for your kind words! It sounds like you have so much on your plate, but your outlook also sounds pretty amazing. A desire to be more optimistic is the first step, I think...but don't force yourself to feel things that aren't genuine. Just start slowly, look for small things that make you comfortable and happy, and then the rest will eventually follow. Don't push yourself to be "up" all the time; remember it's okay to grieve all you have been handed. You are already stronger than most people out there, so just take it day by day. Please do keep writing and keep in touch! I'm wishing you healthy and happy days ahead...

  10. Maya, you are an inspiration to us all. So happy I found your blog.

  11. Peter: I'm so happy you found my blog! Do you live with a chronic illness? It's wonderful hearing from you and I hope you continue to follow along :)