A Beautiful Reminder (Elly's Poem)

It's not every day that someone writes an intensely moving poem for you.

Elly Bookman and I met at Colby during my sophomore year. I was in the Colbyettes (Colby's oldest all-female a capella group) for a year at that point . I first met Elly during try-outs that fall. She serenaded the group with her gorgeous voice and my favorite Coldplay song...the girl knows how to get to me). The decision to accept her into the group was unanimous and, from then on, I've been lucky enough to call Elly my friend.

Elly and I also share an intense love for poetry and often trade our work. It's wonderful to have a friend who appreciated this side of me and it's been exciting to watch her passion grow over the years. Elly's writing was consistently recognized by Colby professors as outstanding and, when she graduated college, she applied for her Masters in Fine Arts. She was immediately accepted into a highly selective poetry program at UNC Greensboro where she is today, immersing herself in the art form she loves. Recently, Elly was also the winner of the first annual Stanley Kunitz Memorial Prize for her phenomenal poem, Another Thing I'd Rather Not Know about Myself . The poem was recently published on the back cover of  The American Poetry Review - one of world's premiere literary journals ! !  I couldn't be prouder of my talented friend and - mark my words- I know she'll be a famous writer one day.

On one particular night this past September, my pain was worse than ever and sadness hit me pretty hard. I was sitting in my studio apartment alone on a Friday night, not really wanting to socialize. Night was falling and I began feeling worse and worse. All of a sudden a message popped up from Elly (who I was admittedly quite out of touch with at that point). It was entitled "A Get Well Present For You!" Curious, I pulled my computer closer and opened her letter:

Hola Maya,

I may be short on funds (with which to send a more traditional gift), but I wrote this poem last week in a very exciting BURST! of inspiration. I hope it lets you know I'm thinking of you, but also that I know you'll come through, as always, and that I miss you and love you a lot, a lot, a lot! 

To Friends Grievous and Far

For Maya

Chantelle ran barefoot laps around

a schoolhouse on the Big Island of Hawaii

to build up her lava feet. Katie waded

into a pond in Washington 

when she was two, learned there 

how not to drown. Today I consented 

my life will always be worse

than the year I spent in Oregon 

in a house above the town 

with those girls. Even if 

in some year ahead I can walk

across another highway and arrive

at a river, I’ll never have that much good

again in my heart. I’ll live inside

this callous from now on. 

So it is, then, that you and I 

will decorate the living rooms 

of so many separate pains: me alone

with my awareness of how it was, you alone

with your ache for how it always will be. 

But also we won’t ever be short 

of  places we can make into homes

for us to share. There won’t have to be 

a river, there won’t have to be a view and

there won’t even have to be blackberries

growing on bushes at the bottom

of the drive. There will only have to be 

storms that have raged enough

to not come again, magma that’s hardened 

into black dance floors as far

as the eye can see. We’ll have walked it

already, made our matching soles

numb to the length of ground between us:

it will feel like water. It will feel like

the warm blue waves of all we miss and fear 

churning under us, forgotten.

Only halfway through this piece, I burst into tears. When I told Elly how much I needed that specific poem at that specific moment, we agreed there was some larger force that  driving its creation. She said, as she was preparing for night out with her friends, these words came to her suddenly and she felt she had to stay in to write.  Somehow she knew I needed those words. It was the push I needed that night - a beautiful reminder that there would be better and stronger days ahead; a beautiful reminder of friendship.

Love,

Maya

The Countdown Has Begun!

T-6 days until the amazing Kate arrives from Australia!!!!!

I honestly can't believe that we'll finally be meeting. Just to recap, Kate and I met through Loving With Chronic Illness this past spring. She found my blog via the Spondylitis Association and saw so many similarities in our stories that she decided to send me a message. All I can say is thank God she did.  Our letters and Skype conversations have come to mean everything to me and can brighten any day.  In addition to sharing the same diagnosis, we share an amazing bond and have become an unstoppable duo. From day one, she'd provided me with unspeakable comfort and has seen me through the past several months with love, optimism, strength, and complete understanding. I admire her compassion and approach to life more than I can say.

I've had so much going on (mainly boatloads of schoolwork), that it hasn't quite hit me until now: in just 6 short days, we'll be together! We'll be exploring the city, finally talking face to face, and making memories. Kate has never visited the U.S., so I want to make sure she sees as much as possible. My family has decided to postpone our Thanksgiving by two days so Kate can join us and we couldn't be more excited to have her! I also plan on fully embracing tourism when she's here - we're talking a double decker bus and everything. Aside from letting us see a lot of the city in a short period, it will be a "Spondylitis-friendly" mode of transportation. Other ideas include: A boat trip around the Statue of Liberty, the Rockefeller Christmas tree & Macy's windows, Highline Park, Central Park Zoo museums, Broadway shows, dog watching in Riverside Park, a possible walk across the Brooklyn Bridge and a visit to my brother's apartment, and the list goes on. We're also planning to head up to Boston for a weekend to visit friends and show her a new city. While it may be ambitious, we may even make our way to Maine or Vermont! So I have ideas, but I'm more than open to more - please send any suggestions my way!

What's your list of "things you can't miss" in New York or Boston?

I wont have much time for blogging when she gets here, but  I'm really looking forward to writing about our two weeks together. Thank you, internet, for bringing Kate and amazing people like you all into my life.

Love,
Maya

It's Okay To Go Home

A required course for all students pursuing their masters in social work is called Human Behavior & The Social Environment (shortened to HBSE, thankfully.). HBSE looks at  individuals throughout their life course trajectory. How are people influenced by their environment and, simultaneously, how do they influence their environment ? What stressors do they face and how might this change over time? What factors contribute to resilience? As the semester wears on, I find myself relating these concepts to my own life. Although I've lived with Spondylitis since I was a little girl, it's safe to say that the past few months have been the hardest time of my life. HBSE got me thinking... how has illness impacted my development and how is being chronically ill at age 24 different than other points in my life? 

In our society and especially given the current job climate, more and more new college graduates are moving back in with their families until they can get on their feet. Before moving into the city, I was no exception. It just so happens that my parents are my best buds, so that situation worked out nicely. My brother, sister-in-law, aunt, uncle, cousin, and grandparents all live in the area too, so after living far away for years, it was great to be home.  I'm truly blessed to say that home is and always has been a warm place to run back to. 


While reading a HBSE article last week about human relationships and attachment, this line stuck out: "The most primary human needs is to have a secure emotional connection—an attachment—with those who are closest to us: our parents, children, lovers, and partners..." I'd definitely agree with that.

The article went on to discuss how fear and uncertainty in a person's life can affect attachment: 

"When the individual is threatened, whether by traumatic events, by the negative aspects of everyday life such as illness, or by an assault on the security of the attachment bond itself, powerful affect arises, attachment needs for comfort and connection become particularly salient and compelling, and attachment behaviors, such as proximity seeking, are activated. A sense of connection with a loved one is a primary inbuilt emotional regulation device. Attachment to key others is our "primary protection against feelings of helplessness and meaninglessness" (McFarlane Sc van der Kolk, 1996, p. 24).  Makes sense, right? There's a reason we all just want our mommies when we're at our sickest.


Living with chronic illness at any age is unnatural, but at 24 the stakes feel somehow higher. Life is moving on and I'm aware that achieving true independence from my parents is common and expected at this stage. However, the unpredictability of chronic illness really complicates things. This is why - after living on my own in different states, different countries, and a New York city apartment for the past year - I've been going back home more than ever. When I couldn't stand up or walk on my own, my parents provided me with this physical assistance. Emotionally, they've been  there every step of the way: checking in constantly, listening to my fears, and helping me stay hopeful. Financially, let's just say they've helped with everything. They say they're more than happy to do all of it and I'm infinitely grateful. I know I've got the best parents out there.

I also know that I've spent too much time feeling guilty about needing this help and comparing myself to other people my age. I am not like everyone my age and I've learned to accept that I need my family a bit more right now. It will all come full circle and, at some point, I know I'll be there for them (gladly). As it stands, I need to stay near my support network because I've come to understand the fragility of my situation...it's also where I'm happiest. Especially when our lives have been turned upside down, it's normal to crave attachment, safety and reassurance from the people who mean the most. In fact, it's almost instinctual.

I thought I understood my disease and was confident that, even if there were unpredictable cycles, I could handle it. In a strange way, part of me is grateful that I experienced the full effects of Spondylitis. It was a harsh, but important dose of reality; the experience begged me to slow down and understand what I'd be up against in my life. It forced me to accept that I am sick, learn to care for myself entirely, and trust in the people who love me. Now I see that I'll always be learning how to live with chronic illness and, just as I'm faced with unique challenges at 24, I'll continue to encounter new hurdles as I grow and change. We all will. Undoubtedly, I'll find new aspects of my life affected by illness and hopefully I'll gain more and more wisdom that will help me cope. 

I pray that, with the help of my loved ones, I'll continue to learn from everything - the good, the bad and the ugly. I pray that I'll always find the strength...and I wish the same for all of you. 

Love,

Maya

 

Chaos & Then One Step Forward Daily

Hello my wonderful readers,

I've been so moved by the messages and letters of support over the last few weeks. Many of you have told me that the posts that speak openly about my struggles are the ones that have meant the most to you; that they've made you feel less alone. Although it can be intimidating to keep writing when things get bad, you've all given me strength to continue. Deep down - however solitary this pain has felt -  I know that what I'm going through can't be unique to me. So I hope that my attempts to explain the past several weeks can help someone in some little way. If nothing else, I hope I can show that it's okay to be honest when things gets really hard.

I knew that after my Humira stopped working this summer, there would be a period of uncertainty until I found a proper regimen again. What I didn't foresee was the battle I'd be up against; that the process would be so prolonged after my allergic reaction to Remicade; that my pain level would become so extreme; that almost every day would be disrupted by various appointments and bizarre side effects; that I'd lose confidence in myself and my future. The people who are closest to me have reminded me that it's only natural to hit a breaking point after battling illness for 24 years (and especially after the last 4 months). I've tried so hard to remain optimistic, but over the past few weeks everything that's happened just caught up to me emotionally.

A few weeks ago, my pain was so extreme that I just couldn't function properly again. I was desperate for relief and so, for the first time, I saw a pain doctor.  This is when things started spiraling out of control. Because this doctor believed that, in addition to Spondylitis, my pain had a significant Fibromyalgia component, I tried various medications for this condition. Each drug quickly eased my pain, but also caused such horrific side effects that I had to discontinue them. For instance, I gave Gabapentin a try at its lowest dose - a medication intended to ease burning, nerve pain. It immediately lessened my pain, but as it got further into my system, I became progressively more depressed. Eventually, I couldn't stop crying. While I've felt down about my illness before, this was unlike anything I'd ever experienced - I wasn't me! I also lost my ability to finish my sentences while speaking or writing and I couldn't process what people were saying to me. It was a terrifying experience. After reading hundreds of patient reviews, I see that my experience with these medications are anything but unique.  Thank God for my parents who could tell me apart from side effects. 

After months of being on steroids and new drugs, it was hard to see myself clearly. I didn't feel like myself, I didn't look like myself, and after Gabapentin I didn't even think like myself. What medication was having what effect? Were these drugs helping more than they're hurting? With so many uncertainties, how could one not feel entirely lost and insecure? I felt completely chaotic and depression hit me in a big way. In this May post , I wrote about my first experience with depression during college. Because I'd been through it before, I knew I wasn't going in a positive direction. I was scared and started losing hope of ever getting better or living the life I'd been planning. I was losing interest in everything and crying at the drop of a hat. I wanted to sleep all the time, I lost my appetite, and my mind felt fuzzy and confused. I've never felt less like myself. Through it all, my family, John, and my best friends were assuring me that it was only temporary; that nothing could change me at the core. They were helping me see better days ahead. I'm infinitely lucky to have their love behind me.

Even though I just wanted to curl up under my covers, my mom (in her infinite wisdom) reminded me that I  just had to take steps forward every day - no matter how small they might be. It hasn't been easy, but it's working. First, I realized I needed to regain some control over my body. I made the decision to taper off every medication I could (steroids, pain meds, etc). I needed know myself again without those chemicals running through me. It turned out to be a great decision. Although I had to tough out some painful days, it now seems the Orencia infusions are starting to work! (I'll write a post about this soon). Every day my spirits are lifting and I'm feeling more like myself. I'm checking back in to relationships and school and am finding it easier to keep up with daily life. 

While I'm grateful for modern medicine, I'm now quite wary of it. I know I'll  be a different kind of patient moving forward. When I have more energy and stability, I will ensure I'm working with doctors who best fit my physical and emotional needs. Although I know my form of Spondylitis requires TNF blockers like Orencia to control inflammation, I will be trying everything else I can to stay natural in my pursuit of health. I will research medications and treatments thoroughly before ever putting them into my body. I will not count on medical professionals for validation - I'll remember to trust my instincts. I'd like to start seeing a therapist who works specifically with people living in chronic pain. I never want to feel that lost again.

To family, friends, readers, and all of you who have shown me love during these hard months - thank you again. Thank you for your prayers and concern - I have borrowed your faith when mine was gone. Thanks for reading and for being along for this journey, no matter how hard it gets.

Love,

Maya

Saying Goodbye To A Best Friend

 I've written before about how crucial I believe animals are to our emotional well-being, especially those of us coping with chronic illness. They have ways of sensing our pain like many people never could. They have the ability to empathize with us in profound and surprising ways. Suffering doesn't feel so much like suffering when they're beside us.


In this March post, I first introduced my two wonderful pups - Riley and Lily. If you've spent any time with me, you know I can't go very long without mentioning something about them; you know they're on my mind and my heart constantly. It's hard to explain just what they mean to me, but they're my family... and I think that says it all.

Our gorgeous Bernese Mountain Dog, Riley, was diagnosed with  Canine Lymphoma in 2007 - a form of cancer that is all too common in this breed. Although I was starting my senior year of college and couldn't be home during that time, my mom took him for regular chemo treatments (he was such a good patient that he even offered his paw to get the IV!). With fantastic medical care and the love of our family, Riley beat cancer and still managed to remain the goofy, amazing, and affectionate dog he always was. To this day, our vet calls him her "poster  boy." In our hearts, we knew that every day we had with him was a gift, but it was easy to forget about the possibility of his cancer ever returning.

Lately Riley has been unwell - he's had eye infections, an odd cough, and has just seemed sad. We've taken him to the vet several times recently, but there was no definitive answer until last week when his lymphnodes began to swell. On Friday it was confirmed that his cancer had, in fact, returned. We were devastated, but still hopeful that another round of chemo might do the trick. I spent the day with him on Friday and, as the day progressed, he had a harder and harder time breathing. All I could do was talk to him and try to soothe him, but it hurt to watch him suffering. By the time we brought him for his first treatment that same night, his lymphnodes were so swollen that he just couldn't breathe. It all went so terribly fast. As my mom and I watched our sweet bear pass away, it was easily one of the worst nights of my life.  We are all heartbroken.

No matter what else was going on, Riley's sweetness and warmth remained constants in my life. I knew I could always return home to him bounding toward me, overjoyed by the simple fact that I was there. Riley could brighten any moment and had a certain look that made you feel both comforted and adored. He even stood up on his back legs to hug us! He reminded me to enjoy the simple stuff in life. For example, I'll never forget his favorite pastime:  repeatedly barrel rolling down the hill in our backyard just because it filled him with joy. I loved how he fancied himself a lap dog (all 110 pounds of him) and always positioned himself perfectly for back rubs. His passion for food was unparalleled (who else could put away 13 bagels at a time?). Riley was truly one of a kind and anyone who met him knew that.

 Although the void is tremendous and I'm missing my Riley every minute,  I need to focus on what a gift he was. I am so much better for having loved him.

Love,
Maya

Ps: My blogging will become more regular soon - I'm working hard to get everything back on track...