How this all came to be...

At the age of three I was diagnosed with lower bilateral spinal muscular atrophy; my symptoms were inconsistent with typical SMA and this was the best guess.  The year was 1986 and at that time my parents were told science didn't know enough and that they should keep me as active as possible.  My parents made the decision, for which I'm extremely grateful, to proceed with raising me as if life was normal.  This meant no doctors, tests, hospitals or any other invasive quests to "find an answer."  Instead they gave me art, girl scouts, swimming, ballet, friends, vacations, and every other delight that embodies the quintessential all-American childhood.  I grew up knowing that I was physically different, but believing that I could do or be whatever I wanted.  I don't know if it was a conscious decision on their part at the time, but what my parents gave me was the beginnings of an internal locus of control when it came to my physical health.  Despite the specific physical limitations (leg weakness, abnormal gait), I believed I was a healthy person and I think that belief has carried me forward and I've done pretty okay in life.  

I was in college the first time I looked up what Spinal Muscular Atrophy was and, to be honest, I really didn't like what I read so I just kind of avoided the idea until I was about 28.  I was aware that my abilities were slowly lessening with time, but it wasn't until my later 20's that regular daily living activities were becoming more difficult - to the point that I decided to see a neurologist, which led to a genetic test, and the eventual confirmation of the diagnosis Spinal Muscular Atrophy, Type 3.

Spinal Muscular Atrophy is a degenerative genetic neuromuscular disease.   The missing gene affects the bodies production of an essential protein that keeps nerve endings healthy.  Without this protein the nerves die, and consequently the associated muscles atrophy.  However, with SMA there is a copy gene (a person with SMA can have one to four copies, hence the SMA Types 1 through 4).  The copy genes can produce a version of the protein, but it is not as stable as the original.  The more copy genes, the less severe the condition, but the variety of variables means the condition presents differently in every individual.  In full disclosure, I have never met another person with SMA...but this is what they say.

So, I believe that everything unfolds in life as it should.  Things happen when we are ready and, if we choose to align ourselves with our highest good and our higher purposes, then we are guided to certain experiences and protected through that process.  This protection often shows up as the opportunities, people, circumstances, etc. that surround a situation - even a difficult situation.  When things fall into place, smoothly, I usually feel like I'm on the right path.  Throughout the past few months, and my life as a whole, many things have fallen into place to allow me to be where I am now - traveling to Bangkok for stem cell treatment.  Somewhere along the way I adopted the phrase "It's going swimmingly!" to summarize this seamless unfolding of events.  (Considering the concept of stem cell treatment only surfaced this past July, and this entire process has been made possible by the generosity of others, I'd say things came together quite swimmingly!) So, let's start at the beginning...

This last March I broke my foot.  When you break a bone, everyone's first question is "What happened!?"  For me, the answer was, "Well, I just sort of fell...in the kitchen.  I was standing and the next second I was not."  I have fallen more times than I can recount in my life and I had never broken a bone prior to this.  I have also always feared breaking a bone.  My physical independence has relied on a precisely coordinated, highly specific set of details.  Everything matters and even small changes can make or break being able to do something independently.  So crutches, casts...unusable limbs...all things that would put a giant kibosh on the independence.  I've always known this and thanked my lucky stars that with every fall (and I've had some doozies) I've never had more than a couple of bruised knees.  Usually, I know I'm going to fall right before it happens.  It's an odd feeling, but normally I start to lose my balance and it all kind of happens in what feels like slow motion...and I always know exactly what happened.  (I bumped my hip into the chair, I stubbed my foot on the carpet, I went to steady myself and missed.)  But this fall was....different.  I have no explanation.  I know that I was frustrated with my body that morning (for not doing what I wanted it to), I was running late for work, and I was in the kitchen, ready to leave, and I just went down.  Call me crazy, but it kind of felt like life just "pushed" me down.

Now, its important to mention that I have always been fiercely independent.  We won't go into the details, but I think its fair to say that I had (sometimes still have) an issue with independence and dependence.  This can be summed up as I might choose not to do something rather than ask for help or accept offered help (it's not a pride issue, it's an imposing on others issue...and a general insecurity with being human).  My world pre-fall was becoming increasingly restricted.  As previously mentioned, during the latter 20's I started experiencing more and more weakness in other areas (hands, calves, arms, back, neck), which was making routine things harder (showering, bathrooms, driving, walking, etc.).  My life was starting to become very small and I was restricting it to only the things I knew I could handle confidently on my own.  My biggest fear in life (next to death...a topic for another time) is bathrooms.  For some reason I came into the world with a wildly unbalanced issue with bathrooms.  The thought of needing assistance in a bathroom could keep me up at night...I even have reoccurring dreams about bathrooms...but the point is, all of this craziness and irrational fear was keeping me from doing things or even entertaining the idea of options.  I would have never dreamed of traveling across the world to get any kind of treatment - one, because I didn't know it existed and two, because there's a million things about travel that are not AMA friendly (you can start with airplane bathrooms!).  And the thought of even talking about any of this...with anyone...made me feel all "a panic."

If you're wondering why I'm telling you this....I have a point, I promise!  All of this is relevant, and comes full circle back to how I broke my foot, because breaking my foot was an essential, necessary component of the equation.  To me, it feels a bit like divine intervention.  Someone saying, it's time now. It's all going to be okay, but it's time to take a step out of your cage and into your freedom.  (And if you can't take that step voluntarily, we'll give you a little nudge...or in my case, a push).  It's ironic (or really just the supreme beauty of life) that one has to become completely dependent to find freedom...but, freedom is, after all, merely a state of mind.  (The cage is not the body - the cage is the fear, which only exists in the mind.)  Breaking my foot broke the ice between me and the other side of my fears.  It forced me to become completely dependent.  Since the fall, I need help doing just about everything (bathrooms included!).  But you know what?  I survived.  I'm still me.  And I'm learning to have a little grace with my own humanness and a little acceptance that having a human experience means having a body...and we're all in the same boat when it comes to that.

So, the broken foot kinda put me out of commission.  Even after it healed (which took close to four months), I never regained my independence.  I lost a lot of strength in my body during that time and it hasn't returned.  It's put a whole different spin on life.  (I haven't been really by myself for nine months.  Going to work became a new challenge.  Going anywhere became a new challenge.)  Fortunately for me, my mom was in a place in her life where she could be my full-time everything (thank you Mom!).  Which, with the tremendous understanding and support of my friends and employer, life has gone on pretty uninterrupted.  This in and of itself is a pretty remarkable statement.  I still have my job, still go to work, still have my apartment.  My needs are met.  This is that protection I'm talking about.  I feel very blessed and very fortunate.  Clearly, the universe has a plan.  And, to boot, there was also a lot of happiness and fun to be had this year.  I actually went and did and saw more things this year than I have in quite a long time (Again, thank you Mom!).

So the new routine (whilst a blessing from above in it's functionality), is not a lifestyle I really want long term.  I miss my physical independence, every day.  Thus, the motivation to start really looking into SMA and any hope for improvement was born.  The next series of events unfolded in a remarkably swimmingly fashion.  I found Beike stem cell treatments at the Better Being Hospital in Bangkok during a basic Google search.  To my surprise, they have been doing stem cell transplants for a variety of conditions (including SMA) for several years now.  The part I liked best was this concept of functional medicine.  Beike's philosophy is to treat the whole person and the whole body.  The treatment experience includes physical therapy, aquatic therapy (yes!), nutrition, acupuncture and other supportive therapies.  This is already in alignment with my belief system, so I was intrigued.  I decided to just apply.  Within a week I was assigned a coordinator.  The process was all very professional, but, in the beginning, also all online.  I'm not going to lie, I had my moments of skepticism.  (Who am I really talking to? Is this a scam?)  But in the end, it took about a month to complete the process, and by the end of August I was accepted.  I took the next month to really do my research and get organized.

It's quite an eye opening, and saddening, experience to really explore health care in the U.S., especially when you need it.  It is certainly not a system that is designed for easy access, nor is it always encouraging.  (I kind of already knew this from what exposure I have had - and from being a social worker who has tried to help others access it - but nonetheless, this reality was reconfirmed).  Needless to say, the outcome of my research was: there's nothing available in the U.S. at this time.  So in close consultation with those dearest to me (and after more research), it was decided that this Beike opportunity seemed legit and I had nothing to lose (and a lot to hopefully gain!).  So now, I'm all in.  And I decided I need to go in January - this will be excellent.  It's just after the holidays, January offers optimal weather in Thailand, I'm excited and ready for good results, and I'll be home before my birthday (yes, it did cross my mind).

If this was really going to happen, and move out of the wishful thinking phase, I needed to get serious about the next step - fundraising.  Stem cell transplants are rather expensive.  I was going to need to raise $45,000 to make this happen (and to a person who still gasps at anything over $20, this seemed like a tall order).  My initial research on fundraising indicated that it can be complicated (how are you going to raise money, who is going to hold the money, is it going to count as income, will I have to pay taxes...and on and on).  My Beike coordinator (who I had, by this point, had the pleasure of speaking with on the phone and who is a very helpful gentleman), referred me to an organization called HelpHOPELive.  Based in Pennsylvania, HHL is a non-profit group that helps individuals raise money for transplant related expenses.  To my delight, HHL was very familiar with Beike and had worked with other clients who received treatment there.  On October 1st (yes, about 33 days from the time I was accepted for treatment), I had a HHL account and received my first donation...quite swimmingly!

Everyone told me fundraising is going to be a lot of work...be patient...it may take some time, but you will get there.  A couple of my dearest advocates even gently cautioned me that January may be a bit unrealistic.  So, are you ready for the really miraculous part?  We raised $45,000 in two months.  In TWO months.  I had my treatment dates set and my flight booked to Bangkok before Christmas.  To this, I am quite frankly speechless.  I consider myself to live an important, but small life...and the amount of kindness, love, generosity and support that came from friends, family, and strangers was beyond words.  It is probably the most touching and remarkable experience I've had in my life, and I am deeply grateful.  I consider it a true expression of divine love to be surrounded by people who are so supportive...and not just financially...but through their words, affection, presence, prayers and good wishes.

Truly, the number of strangers who I have met in the last couple of months who have shown such genuine kindness and excitement for me has been extraordinary.  I always think of it as the universe's little way of reassuring me.  There are billions of people in the world, and most of us only really know a hand full - the special chosen few that we have agreed to walk through life with side by side.  But we're all still connected, and I am continually fascinated how we can cross paths with people, even briefly, and not even realize the messages we're delivering or the impact we're making.  Since I was in high school strangers have been coming up to me, at the most random times, and telling me in one way or another that I can heal my body.  And we're not just talking about one or two...we're talking about more times than I can recall.  Now personally, I've always chosen to view these experiences as reminders...guideposts on the journey.  It's always resonated with me - yes, yes I can.  If I really stop and think about the last 10 years, much of that time has been a gradual accumulation of information and experiences that I feel have prepared me to be in the best place mentally and emotionally to receive this treatment.  I feel ready.  Coincidence?  I think not.

So this brings us to today.  I leave in T-minus 6 days.  Passports are ready.  Visas have arrived.  Bags are starting to get packed.  In-flight entertainment has been selected.  And I'm taking deep breaths - filling my lungs with all the gratitude and love I have for this moment and the opportunities that lay ahead.  May the journey go simply swimmingly!