Monday, September 24, 2012

In memory of my Sista, Karen.

Blank page. I stare at it not sure how to begin. On Saturday night, my family and friends threw me a going away party, as I will be moving from the Great Midwest to the Great Southwest in less than two weeks. They made a picture board, we sang karaoke and laughed and after a slide show featuring yours truly, I joked that I felt like I was attending my own funeral.

On Saturday night, my friend Karen was taking her last breaths after so many years of fighting the shit that growing up with Arthur throws at us. Karen is petite like me (thanks to Arthur). She has an amazing smile and a devious giggle. I met her when I was 12 at what would be my last arthritis conference until my 20s. Karen used an electric scooter that year and I remember feeling like I was actually, “cool” once she and another “cool kid” Kirsten, invited me to go swimming, AT NIGHT. To this day, I remember how amazing it felt to be to be swimming under the starts, the California night breeze chilling us just enough, the way the lights of the pool glowed beneath the water, and how we laughed and wrestled and splashed, “like normal kids.” 

We lost touch after that weekend. I went into adolescent denial and decided that I didn’t need any help coping with Arthur. And I spent the next 10 years making memories with those who sang and danced with my on Saturday night. But I never forgot those girls or that night in the pool.

In 2006, Karen showed up at a juvenile arthritis conference in Atlanta. She was bubbly and energetic with that devious laugh and twinkle in her eye. She was feeling good. She was a lawyer and passionate about helping children with “special needs” and disabilities, especially juvenile arthritis, get access to health care, medication, education and a “normal” life. She was a fighter. When she flipped her hair back just like I do and told me about the rheumatology fellow she had her eye on, I knew I found a kindred spirit. She remembered me from so many years before and by the end of the weekend, we were sisters, once again. That’s the thing about living with something like Arthur, when you have the chance to get together with someone else who has been through it, all the walls and bullshit pretensions fall away because we know, we can appreciate, how what you do, drive or wear, mean nothing when compared to a “flare free” day, when you can tie your own shoes or pick up the quarter you dropped in front of the soda machine.

It’s been six years since I’ve seen those twinkling eyes. Soon after that conference, Karen’s health began to get worse. The disease has attacked her internal organs in a way that I have been fortunate enough to avoid. Her lungs and heart were often compromised by inflammation. Her neck was crumbling, the vertebrae disintegrating and pinching her spinal cord, threatening paralysis. She was losing her eyesight due to Uveitis (yup, arthritis gets your eyes) and cataracts (from years of poisonous “treatments”). Her ankle was dissolving and certain doctors suggested amputating her right foot.  She was 35.

I could write another full page of what she went through in the past three years, but it doesn’t matter anymore. What matters is that there is no more time. Karen and I spoke in early spring and I talked about visiting her in South Carolina but “life” got in the way and it never happened. Yet I kept tabs on her through our mutual “family.” I heard that she was “having a hard time” but on any given day or month, one of us is “having a hard time” and that can mean anything from a general flare to well, losing your foot or your arms or your eyesight. And for us, it becomes just another “thing.” I didn’t check in.

On September 10th, Karen celebrated her 40th birthday. I sent the lazy person’s easy Facebook “Happy Birthday” but I didn’t call. I didn’t know it had gotten “serious” as only we understand serious.

Last week, there were several moments when she passed through my mind and I thought, “I have to call her later.” There was just this nagging little voice that told me something was amiss. Yet I didn’t make the call. Now I never will.

On Saturday night, Karen took her last breath. On Saturday night, I held my loved ones closer and hugged them tighter and said “I Love You” much more than usual, as if I’d never see them again.  On Sunday I got the call.

I didn’t listen to that voice, Karen. I’m so sorry I didn’t call. I can’t change it now. But I promise that from now on, I WILL call.  I will listen to that voice and I will hold my loved ones closer and hug them tighter and say “I Love You” as if I will never see them again. Because no one is promised a tomorrow. 

Here’s to finding yourself a hot doctor in heaven!! I know you will…

Saturday, July 28, 2012

That's Nice of You!!

That’s nice of you.

Today in Philadelphia, hundreds of people are gathering for the city’s first ever Disability Pride Parade. With this in mind, I am going to share something I have been thinking of for a couple of weeks.

Recently, there was a photo circulating around Facebook. It's a snapshot of a young couple ready for prom. The she's an attractive young woman, as is the young man, decked out in their finest formal wear. So why is this picture circulating around Facebook, asking for shares and likes? Because the young man has Down's Syndrome, and apparently, the fact the fact that this young lady, who is very cute and probably popular, would go to prom with a guy who has Downs is an anomaly.

The caption:
She took a boy with down-syndrome to the prom with her. How many "likes and shares" for this beautiful picture?

Thousands of armchair activists and PC loving people hit the “Like” button, celebrating this “inclusion.” However, few of them gave a second thought to why they “liked” it and what it really says…

My senior year, I was in love with a guy we’ll call Highspeed. Highspeed did not return my affections and asked another girl to prom. It happens. It happens to a majority of teenage girls. But in my head, the reason he didn’t “like me like that” was because I had arthritis.

So with Highspeed out of the running, I asked a boy named Matt. Now Matt was a boy I had loved my junior year (oh our fickle teenage hearts). I asked him to go “as friends.” Matt had a girlfriend at another school, but her sister went to our school and her sister “told her about me.” Apparently feeling no impending threat of Matt making out with me at prom, she said that he could go “as friends.” At the time, it didn’t really bother me because in all reality, Matt was a placeholder. Even though he was a helluva lot more fun and better looking than Highspeed, I was more concerned with why Highspeed wouldn’t take me to prom than why Matt could.

Until I heard about Ken. I’ve known Kenny since kindergarten. He lived on my block. He knew me before I “got sick.” He knew me when I ran around, climbing trees, riding bikes and chasing boys around the playground. He also watched as I began to walk funny, transfer schools and eventually began using an electric wheelchair. When he saw me in the neighborhood, he still said “Hi” which somehow made me feel like I was still “normal.”

Fast forward to a few weeks before prom, Ken (he stopped being Kenny sometime after Freshman year) and Matt stood on the cement steps outside of the school’s main entrance, smoking their cigarettes and waiting to be let back into the building because they had skipped a class. Being a neighborhood school, everyone knew each other so Matt and Ken were friendly. Making conversation, Ken says to Matt, “I hear you’re going to prom with Deserae.”

“Yeah, just got my Tux,” Matt said proudly, he was a sophomore going to senior prom.

“Well, that’s nice of you,” Ken replied.

That’s nice of you. I have never forgotten that. Luckily, I was too wrapped up in the high school drama of Highspeed and his date (and the fact that she wasn’t me) to worry about Ken’s comment. Plus, what Ken didn’t realize was that Matt knew that he was my stand in and we really were “just friends.”

Prom night, Matt showed up at my door, looking extremely HOT in his black tux and teal cumber bun, wearing Oakley shades and smelling of Drakkar and I must say, I was looking pretty sassy with my fancy up-do, little black velvet dress and platform heels. The hall looked beautiful, with silver stars and royal blue napkins. "A Night to Remember" hung on a banner over the DJ. Matt was fun and as the night went on, even tried to hold my hand, bump and grind and, eventually, kiss me.

Guess I was more of a threat to the girlfriend than she or Kenny thought.

However, due to my habit of wallowing in my own heartache, I spent most of the night watching Highspeed rather than returning Matt’s advances. And somewhere, in the back of my mind, a little voice kept reminding me that Matt was just “being nice” and I didn’t need him to do me any favors. 

I have never forgotten Kenny's simple, off-handed comment. And unfortunately, even now, when dating, I sometimes hear that voice in the back of my head, “That’s nice of you.” I wonder how many people still think that, when they see me out with a man, when they see anyone out with a disability dating someone without. I battle that voice. I tell myself that it doesn’t matter what other people think. Until something like the Facebook prom photo gets 12,000 Likes and counting and I am reminded that regardless of how far I’ve come in accepting and even embracing my disability, the rest of the world still has a long way to go. 

Thursday, May 31, 2012

D-Ray & the Glass House: A brief relection...

D-Ray & the Glass House: A brief relection...

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A few months ago, was packing my bags for the fifth annual national Arthritis Introspective Gathering in Sugarland, Texas. Today I, again, find myself packing my bags and getting ready for another adventure; this time, it’s a trip to Arizona, to find my new home. I have lived in Milwaukee, WI all my life. As you may have read in my previous post, I was diagnosed with Juvenile Rheumatoid Arthritis (JRA) at age 8. As so many of us who live with this disease, I have become a master at adapting. When I was no longer able to reach my feet, I bought a sock aid and slip on shoes. When I began to have problems getting in and out of the shower, I bought a bath chair. I have an arsenal of adaptive devices that help me stay independent. Yet, I still take comfort in knowing that help, that family, is only a phone call away. If I flare and need someone to pick up my medications or take out my garbage, I can call a loved one. If I have surgery, I have my Mom to help me recover. This has always made me feel safe. It has always been comfortable. After attending the 2012 AI Gathering, I decided that there are some things more important that being comfortable.

Since my first visit to Arizona in 1999, I have dreamed about moving out West. Most of my Arthritis Introspective friends are transplants, having escaped apocalyptic snowstorms, icy sidewalks and sticky summers for the “dry heat” of the desert. I have always said “someday.” Not really knowing when that would be. I had a job. I had family and friends. I had school. I had arthritis. The “what ifs” were always somewhere in the back of my mind. What if I flare? What if I need another operation? What if I can’t find a good doctor? What if…

Four years ago, the disease had progressed and my right hip needed to be replaced. After five years as a fundraising and event coordinator for the American Cancer Society, I could no longer keep up with the physical demands of the job. I went on long-term disability and it was one of the most difficult decisions I’ve ever made. We are a society that measures people by their occupation. Without that title, I began to wonder what I would do with the rest of my life.

Luckily, I had Arthritis Introspective. I worked with Kevin Purcell to get the organization off the ground, working by trial and error to develop a vision and mission for the organization and striving to connect with others living with the disease in the prime of life. I had a support system. I had others who understood what it was like to no longer have to set the alarm in the morning. And I dreamed of Arizona.

We all have times in our lives when something whispers in our ear and we know that it’s time to act. This happened to me at this year’s Gathering. The weekend was full of information and empowerment, with sessions both emotional and educational and always entertaining. From communication and intimacy to advocacy and medical advancements, the programs offered something for each of us. Yet as always, my biggest highlight was meeting so many new, amazing people. For the first time, half of those who attended were new to the event and several were newly diagnosed. Many of were frightened, frustrated and unsure how they would make it through. I couldn’t tell them when it would get better or divulge some great wisdom that would turn the sky to rainbows and butterflies. But what I could do is share my story and assure them that though life with arthritis is challenging, we all eventually find our own way to cope. And by finding a community of shared understanding we also, find hope.  

Throughout the years there have been people who have called me an “inspiration.” I always felt rather uncomfortable with that title, as I have simply lived my life as best as I can, sometimes I do a better job than others and I have had my share of dark times. Yet what I’ve come to realize is that perhaps part of my life’s purpose, part of the answer to the “why” all of us ask at some point or another, is that I am here to show others that they don’t just have to survive life with arthritis, but they can find new ways to thrive.

With that in mind, I realized that with the national AI headquarters located in Arizona, its time for me to follow my passion to find my purpose (in the words of TD Jakes). I feel that I can do the most good among people working for the same mission. So in two days Phase One of “Operation Relocation” begins as I spend a week getting used to the Arizona heat and shopping for an apartment that is accessible and has the accommodations I need to remain safe and independent.  Of course I have fears; what if I get sick, what if I’m lonely, what if I hate the desert, what if I miss my Mom? But the “What If” I fear most is the “What If I Never Try?”

Besides, Mom can always come to visit.  

Friday, May 11, 2012

A Letter to My Doctor

So May is national Arthritis Awareness month and arthritis has been all over my social media networks. I guess I am happy that with the advent of social media, it has become much easier to educate people on many different subjects, including arthritis. However, I have not personally written about awareness month simply because every day is arthritis awareness day! Life with a chronic illness simply means that some days are better than others and some days are much worse, but with arthritis, you are always somewhat aware.

While the disease is getting a great deal of publicity this month, I haven't seen much about the doctors, nurses and researchers that become part of their patients lives, dedicating more time and energy than we give them credit for; finding ways for us to manage our disease and live the most productive lives possible. I have heard many stories of doctors who didn't listen or didn't care or understand, it's always easier to give voice to the negative. However, throughout my life with Arthur, I have been blessed to have two rheumatologists who took care of me like I was their child; and in some ways I probably was.

This week, my rheumatologist of 20 years retired. I arrived in her office as a teenager, stubborn, filled with denial, worried more about the upcoming school dance than I was about medications, therapy or my future and the fact that I would spend the next 20 years with that tiny wisp of woman with brassy curls and thick glasses. Always matter-of-fact and determined, Dr. Hanna took care of me (often battling with my stubborn ways) and as the years went on, I never pictured a time without her. Though I said "Thank you" often, I don't think it was ever enough, so recently I put it into words.

My last visit with Dr. Hanna was odd. Rather anti-climatic, I don't think either of us knew what to say as it didn't feel like the last time. So to honor Dr. Miriam Hanna, I'd like to share my gratitude and though she's a private person, I hope she won't mind.

Remember to always be grateful for someone who helps to shape your life.

Dear Doctor,                                                                                                              

I have thought about this day for years, knowing that one day you would retire, closing one chapter and beginning a new one for us both. I only hoped it wouldn’t be so soon.

So how do you thank someone who has virtually had your life in her hands for 20 years? Thank you just doesn’t begin.

I cannot remember a time that you weren’t in my life or on my speed dial. Whether you realize it or not, you have become a part of my family, falling into our common conversation as easily and often as some relatives. “What’s Hanna say?” has been a phrase mentioned over our dinner table more times than I can count. My parents trusted you to take on my case when I was still a child and you have stayed with me as I have learned how to be an adult and make a life, mostly successfully, with this rotten disease. And I KNOW I haven’t been an easy patient. Much like a parent, I know you have been exasperated with me more often than I realized and it is only in hindsight that I can see how much work I was/am. But you stuck with me. 

I’m sure when Dr. Wortman referred me 20-years-ago, you had no idea what you were getting yourself into. Lord knows I had no idea. At 16, I still held the secret fantasy that because I had “juvenile” arthritis, it would just, “Poof,” disappear when I became an adult. We all need something to hope for. I guess we learned together.

Whether you know it or not, I have always considered myself very lucky to have you as my doctor. I have many friends who have not been so fortunate and I have to admit that it scares me to go out and face the fact that not all rheumatologists are willing to invest in their patients as you have in me.

Life with RA is painful—physically and psychologically—some days/weeks/months, it’s been hard not to give up.  But it has always gotten “better”—or you just learn a new normal. We ride the waves and just wait for the storm to pass. Because you worked with me, advocated for me and were honest, always, with me, I have been able to earn my degree, to build a career and to become a voice for others with the disease. I’m still waiting for Prince Charming, but that’s another story. The point is, I am living my life because of you.
Again, I feel at a loss as to how to express my gratitude. I hope that this letter gives you at least a little idea of the good you have done and the impact you have made on my life and those who love me. Your care has affected the lives of people you have never met because of what it has enabled me to do. So please know, all of those battles with insurance companies, hospital bureaucracies and (sometimes) obstinate patients were not for nothing.   

I wish you all the best in this next chapter of your life. I will continue to be a voice for the patient and for the doctors who care for us with all of their hearts. Be well, Doctor. I will miss you. 

Thursday, March 15, 2012

A brief relection...

March 13, 2012

As I walk through the terminal heading for my flight home, Bob Marley’s “Three Little Birds” runs through my head and I realize that I’m smiling. It seems like it was just yesterday that I wrote about the mound of clothes piled on my bed waiting to make it into my suitcase. Time goes so fast. Another year, another Arthritis Introspective Gathering has come and gone and I am still flying high; having gotten my arthritis family fix for another 12 months. Some people get a monthly biologic infusion to manage their disease. I rely on an annual infusion of laughter, hugs (I got my seven touches and then some) and sharing…and that will sustain me through the next year; through countless hours of battling with insurance agencies, through pain-filled sleepless nights and frustratingly stiff days, through the times that the curious stares are a little too much to bear and the times when the reflection in the mirror is more critical than the curious stares. It will sustain because I can look back and smile, smile, so unconsciously that I don’t realize other people stop to look and wonder why.
I will eventually write more, but for gratitude is all I can bring myself to share.