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Archive for February, 2014

From Tea to Transformation #FIRSTPhantomTea


by Mo Neville
Last year, at this very same “Phantom Tea” time of year, I shared an article I had written in 2011 regarding a life-changing moment that occurred while sharing a simple cup of tea.  This year, as we gathered in a circle at our conference table, detaching from our computers (if only for a few hours!) and assembling the Phantom Tea packets, I was once again reminded of the importance, power, and warmth of a simple human connection.

It seems the basic notion of smiling at someone, making eye contact, or just saying hello, actions so uncontrived they are hardly spoken of, have become effortful, and sometimes, in some lives, even obsolete. So much so, that some of the world’s most influential people are joining together to stop the spreading of isolation and loneliness. It is no wonder that media icons Oprah Winfrey, Gayle Kine, and Sonjay Gupta are now lending their names and their support to a campaign that reflects this very same message of connection: Just Say Hello.

And although this article is not “new,” and in fact, was my very first post when I arrived at FIRST nearly eleven months ago, the message itself is as resounding today as the day it went from a life experience to a life-changing moment.

I hope when you open your tea packets this week, you think of my story below – or better yet – that you reach out to a friend, a neighbor, or even a stranger you have never met. I hope that you are inspired to share a cup of tea, a bit about FIRST, and your life with ichthyosis…

…or to simply say hello.

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Ode to Tea…

{April 1, 2001} I spotted the name in the daily soup of tweets…One Hundred Cups of Tea. Now, you can call it karma, a sign from the teapotuniverse, or whatever your word is for “knowingness”, but I knew in approximately 3.3 seconds – the time it took to read the first sentence of his mission (can having tea with a stranger change your life?) – with no plans of traveling to the UK, and with a rather bitter distaste for tea in general that I would be having tea with him someday.

That day was today.

I will admit I had a little bit of the pre-caffeine jitters. But I was definitely more excited than nervous. After all, this person was making the most inconvenient of gestures – after traveling the first 3,500 miles, he’d stop in route from one side of the world to the other, to meet some lady he’d exchanged a few pleasant emails with…for a cup of tea. I mean, really, who does that?

After struggling to decipher the new atm-ish parking meters peppering the streets of Philadelphia, it suddenly dawned on me – what if we don’t get along? As I opened the coffee shop door with a four-sugar lump in my throat, I was pinched by the thought of the worst case scenario: volcanic silence – that unstoppable eruption of nothing to say moments…particularly painful amongst strangers. Ugh. I hate when that happens.

There was a slight, early-twenty-something-rocker-type with his head buried in a laptop, sitting in the middle of a couch. He is young enough to be my son, I thought. That can’t be him. Maybe it’s the other guy, slightly balding, with the golf shirt and the Wall Street Journal under his arm. Nope. The young guy stood up. And as he moved in closer it was undeniably the friendly-faced tea sipper from the internet. “You must be Greg,” I said, hoping he didn’t deny his identity and run from this forty-(ahem) year old woman, saddling a cumbersome stack of bags and books. “Yes, hello, nice to meet you Mo.”

Phew. My worries were dissolved by the mere tone of his voice. How cheerful, I thought.

In fact, it took but five minutes to settle in, order our chai teas, and start chatting through the hours like two old bitties at basket bingo. Not only had I lost concern with a difference in age or a lack of conversation, but I quickly recognized we were more like-minded than I might have imagined.

He began by sharing an important moment. The moment, in fact. The one when he found himself walking around London, a place he’d move to with such high hopes of finding his life’s next phase – but instead only finding a growing frustration with the take-no-prisoner pace of the city. One day, while making his way through the fumes of impatience, he noticed something deafeningly odd. “I was looking down at the sidewalk instead of up at the beauty. I’d already forgotten about the castles. The history. Why I’d even come to London.” He stopped and thought, “I don’t want to live this way.”

But instead of running away to that next safe place; instead of continuing an outward search to recapture his optimism; his zest for adventure…Greg journeyed inward.

He wondered why he…and London…came to feel this way at all.

He wondered about the voices between our individual worlds – the ones that judge, that doubt, that keep us away from the conversation…the ones that make us strangers. “What if we look up, look at each other, actually have a conversation. Will it make any difference at all?”

Mostly, he wondered “Can a simple cup of tea with a stranger, change my life?”  Soon after his journey to have tea with 100 people, whom he had never met, began.

He spoke of the people he’s shared tea with thus far; the lone German woman he’d met on the bus; the older couple at the airport; the man outside the restaurant in the midst of a full-blown panic; the emails, the odd per-chance meetings; the occasional struggle to fill the awkward space of silence – the profound lessons he’d been learning from each and every encounter.

“I know now more than ever how important it is to have conversation. We’re pushing away from each other and we need to push back in the other direction, we need to really see each other again,“ he explained.

Soon the story of Greg was becoming very clear to me. This young Canadian man, a self-admitted non-social-butterfly, whom I’d never seen, nor heard of, who had taken a plane to New York, a bus to Philadelphia, slept in a hostel, and made his way through a strange city for a stranger…was the perfect person for me, or anyone, to meet for tea.  Because, as evidenced in his poetic one hundred cups journal, he is not only a delightful storyteller, but he is blessed with the gift of listening.

After three and half hours, it was time for us to part ways. I walked to my car, stuffed a soggy parking ticket in my purse and smiled as I realized something that I will carry with me for the rest of my days. Hmm. Just one cup of tea and we are no longer strangers.

I sat and jotted a few thoughts…

I think, some day, this young man’s life may be quite celebrated; at least for those who need him to be.

I think I will drink more tea.

I think I will one day write more of an ordinary Canadian who chose to have tea with 100 strangers — and in doing so, achieved the extraordinary.

I think someday, because of him, there will be a little less loneliness in the world.

I think there will be more empathy.

I hope so.

It’s such a beautiful dream…

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 Phantom Tea for Two


Living the life you are meant to live…

We are delighted to share a guest post from FIRST member, blogger, portrait photographer and author, Courtney Westlake.

 

Courtney, as many of you know, is the mother of four-year-old Connor, and two-year-old, Brenna Westlake, who is affected with Harlequin ichthyosis. Her blog, Blessed by Brenna, invites readers into the Westlake’s lives and home, taking them along on a weekly journey of medical challenges, extraordinary courage, and the most unexpected life lessons of all. Her posts are a unique blend of topics including personal insight, clinical explanations of ichthyosis, and heartwarming updates on Brenna’s amazing progress.  It is not only a cultural commentary on living with a rare genetic skin disorder but an authentic, inspirational and truly unforgettable journey of love, hope and family.  Her blog this week expresses a moment of  transformation and the deep realization of “accepting the life you were meant to live.” 

 

My survival mode and the loss of the life I had planned

by Courtney Westlake

We are now entering the third year of Brenna’s life, and it seems very surreal to me. Every memory of the years since she arrived are some of my most vivid but yet almost part of a blur too – a blur of emotions, adjustments and just trying to find my way. And relying heavily on God and others.

Even though I’ve been a huge fan of Crystal from Money Saving Mom for a long time, I think I was most looking forward to reading her newly released book because I could relate so much. When I first saw the title, Say Goodbye to Survival Mode, I knew I would be able to both relate to the book and take away so much from it.

Because I was in the trenches of survival mode for a long time. The kind of survival living where life continues around you at lightning speed, but all that you are focused on is whether your child will live. The first year of Brenna’s life, I often felt like I was being smothered. Smothered in grief, frustration, stress. I did my absolute best to focus on the positive.

Courtney Holding Brenna

I said no and stepped away from just about everything I had been involved with. I cut my photography studio work way, way back – after having just completed a beautiful renovation to my studio space the year before. I stepped away from volunteer roles with community organizations. I quit most of my freelance writing jobs.

And instead, I lived one day at a time that year, maybe one week at a time during the better times.

In 2012, there was a NICU stay, eye surgery, 4 additional hospitalizations, surgery for g-tube placement, and multiple skin infections. That was what consumed me that year, and I don’t remember much else. I was surviving, and that was the only option at the time.

I forced myself to get dressed in the morning, to try to find a schedule, to become educated on Brenna’s skin care, to continue to do activities and read with Connor as usual. I forced myself to concentrate on the good instead of the bad. Many times, I forced myself to smile.

(And I accepted help. Because I knew that I needed it. I relied so heavily on everyone in my life for help. Lots of help. We have had so much help I can’t even name it all. And I know without that help, I would likely still be in survival mode. And I just want to take this time to say thank you to all of you for all you did for us during that time. I remember every single act of kindness, every card, every message, every gift card and meal. And I still think about your incredible generosity and thoughtfulness all the time.)

And I would say with complete certainty that every morning I got dressed, every time I focused on what we could do instead of what we couldn’t do, every time I made myself smile instead of cry, it was worth it.cIMG_0145

Because eventually time wore on…and we began to adjust. To life with two children, to life caring for a rare disease. And I realized that I had the chance to take this opportunity to rise up from living in the day-to-day to living both in the present and for the future. I realized that even though you may not be living the life you had planned, that shouldn’t stop you from living the life you were meant to.

Don’t let the loss of the life you had planned stand in the way of the life you were meant to live.

I felt like I was no longer giving things up, like I did that first year, but instead that I was being pulled in new directions, better directions. And I could follow those new paths by choosing the best attitude every day, by choosing to life with intention, by goal-setting again, by using my time wisely.

And I felt like I was almost getting a chance to start over. I could pursue my “best things,” as Crystal calls them in her book – the things I was most passionate about and most set me toward my goals and most fulfilled me.

As Brenna’s health care became less stressful, I did sit down and evaluate exactly what was most important to me and what I wanted to be involved in and what I actually felt like I had time to pursue again. Over the last two years, I’ve stepped back into some of my former roles, and I’ve chosen new ones, like becoming involved in FIRST.

I also have done a lot of praying. I have tried to really open my heart and listen to where God seems to be telling me to invest my time and my energy. To where I should be using my gifts and talents. And how to best care for and provide for my family right now.

CourtneyWestlake-2036In the first year, this blog (referring to blessedbybrenna.com) was very concentrated on one thing, the thing that was the focus of our lives at the time – Brenna. I was even encouraged by a lot of people to share more about other things in our lives, including about myself, but I just couldn’t. There wasn’t much to write about, because my life seemed to revolve around Brenna’s health.

But, gratefully, even though Brenna’s health is obviously a top priority for our family, our lives are now becoming much fuller with other passions and priorities that we have. I am no longer simply surviving, but I am living with intention and purpose again…and much more so than before Brenna’s birth. Though certain times still call for survival mode, I now know how to rise up again from surviving to thriving so that I am not continuing to live in the day-to-day.

And because of this, my writing and my blog have also evolved. I am pursuing more of “my best” and, as you probably have noticed, I am writing more about those things as they all relate to motherhood and the kind of person that I am striving to be…things like my personal goals, freezer cooking (a growing passion of mine and something that saves my sanity!), the books that I’m reading, the books the kids and I are reading, my emotions and feelings as a mother, some of my various writing projects, and my family.

All of these things – not just Brenna alone – influence my life and my role as a mother and wife…and these things are part of the new world of beauty and appreciation for difference that I have discovered because of Brenna’s arrival into our family.
My survival mode was a dark time….a time with a lot of tears and stress and mustering up all the energy that I possibly could just to parent Connor and Brenna every day.

I am proud to say that I now feel like I am living with purpose and intention just about every day. There are many areas I need vast improvement in, and purposeful living is always an exercise in discipline – it is something I work at every day.

But I’ve found that once you get into the habit of smiling, of choosing to see the good over the bad, it comes more easily in all areas of life. And it greatly impacts all other areas of life.

My life today looks much differently than when I envisioned marriage, children and my career as I was growing up. My planned life was much, much different than my real life is. But today, I’m realizing that this is the life that God had planned for me. When I was clinging to the things I felt like I was having to give up, God was leading me toward a different path, a path where I would be able to use the gifts and talents he gave me in a different way, as part of his plan. In each new season, I am striving to open my heart to where I believe God wants me to be and to go.

Now that I have stopped mourning the loss of the life I had planned,

I am discovering every day that the life I am meant to live is so much better.

bookcoverCourtney has recently released her beautiful and inspirational book, That’s How You Know, available at www.blessedbybrenna.com.  Like a warm hug from a very best friend, its uplifting messages and soft illustrations offer hope and inspiration on every page.

 


Building Your Case for Social Security Disability Benefits (SSD)

 

margot 2830.FURYAlthough during his “working years” FIRST member, Steve Flury, had contemplated applying for Social Security Disability (SSD), a nudge from a recent life transition would encourage him to take a serious step toward the process. 

“Once the three kids came along, our budget got really tight, and there was no room for me to miss work because of my condition,” he said.   

His first “real” step toward seeking SSD benefits was actually taken at a FIRST Patient Support Forum, two years ago in Chicago.  “I asked Moureen Wenik (Program Director at FIRST) if I should apply for Social Security Disability benefits and if she thought I’d have a chance,” Steve said.  “Mo’s response was very encouraging. In fact, she said ‘absolutely!’  She gave me some information about the SSD and then…I got to work.”

After consulting with a few Social Security Disability (SSD) attorneys, it was clear that Steve would need to collect all of his medical records including, but not limited to, lab results, photos, biopsies and hospitalization records, from dermatologists, general practitioners, and any other specialists he had ever gone to for medical attention.   Additionally he would need to collect letters from as many doctors as possible, stating that he was in a compromised situation for most work environments. The doctor’s letters would also need to explain the possible health complications associated with lamellar ichthyosis, like overheating and being prone to infections. Plus the letter would need to state that his condition would be long-term, lasting at least one year or longer. 

 “In other words, I was told to go in armed and build as strong a case for myself as possible. So that’s what I did.”

Steve immediately rolled up his sleeves and for the next several weeks, began the journey of contacting all the doctors he had seen for the past twenty years.  His additional due diligence included searching the SSD website for various “disability codes” he would need for his application. “I knew the more prepared I was, the more painless the process,” he mentioned regarding his desire for as “hassle-free” an experience as possible.

 “I have a few other issues like severe eczema, food and environmental allergies and asthma, but I believe the deal sealer was that I had genetic testing done…because you can’t argue with that – and it leaves no room for doubt.”  His genetic testing, showing a positive result for lamellar ichthyosis, added even more credibility to his medical documentation.

“Step one was to submit everything online. Then I was assigned to an agent that I needed to meet with in-person to substantiate the case.”  Due to the detail and thoroughness of his application, Steve was almost immediately approved. “In fact,” he mentioned, “she asked why I hadn’t applied sooner.”  Steve has now been receiving Social Security Disability benefits for nearly a year and a half.

In summary, although there is no  guarantee of approval for any social security disability claim, preparing the application to the best of your ability should include the following:

1) If possible, consult with a SSD attorney to be sure you are following the correct steps, and preparing as thoroughly as possible. Finances should not be a concern because attorneys representing individuals seeking SSD benefits cannot charge for consultations. They are only paid if a person is awarded benefits and the attorney’s fee is approved by either SSA or a Social Security Administrative Law Judge.

2) Contact any doctor, of whom you were once a patient, or currently a patient, and obtain complete medical records, dated as far back as possible.

3) Obtain as many doctor’s letters as possible, outlining specific details about the potential dangerous side effects of the condition of ichthyosis, and that you are in a compromised situation for most work environments. Letters must state that you will have this condition for a least one year or longer.

4) Obtain genetic test results.

Find out more about applying for SSD benefits.