I'm no Slacker...

It's been a rough week or so, and I have to admit I just haven't had the energy to write... But I would hate for any of you to think I was just slacking off so I'm going to  try to fill you in between naps.

On top of my every day physical challenges with ALS, I've been in the throws of my semi annual allergy attack which involves: head congestion, sinus pressure, a nose that runs like a leaky faucet, a choking cough driven largely by a post-nasal drip, and a case of what my doctor refers to as Eustachian Tube Dysfunction (ETD). Yet another incurable disorder I managed to score in the gene pool, that will often cause me to stick my fingers in my ears at what might seem to be an inappropriate moment. 

In short my head feels like a lead ballon and every orifice within it is clogged in some fashion. My former co-workers can attest to witnessing this event in the Spring and Fall of every year; it is most notably recognized by the choking cough that is about as pleasant to listen to as nails on a chalkboard. I assure you, it is as annoying for the chokee, as it is for those unfortunate enough to be in earshot.

Now, there are some OTC and Rx options, that can help manage the symptoms until a lasting frost kills off the allergens but these remedies often zap me into another stratosphere. 

Pre-ALS, taking these medications often made me loopy but I remained somewhat functional, meaning I could take them after I arrived at work, as to avoid operating heavy machinery while drug induced, and get through the day fairly well. I would likely be more amusing than usual under these conditions, and the worst thing I can remember happening, was when I accidentally headed into the men's room instead of the ladies room. No worries, I caught myself in time...

Post ALS, the combination of my regular medications and those that help manage my allergies simply knock me out. I find myself falling asleep while sitting at my PC, waking only to realize two hours have essentially evaporated.
 
I'm usually up early but since there's no school this week, I took the liberty of sleeping in the past few days to try to get some extra rest. I wake surrounded by small creatures trapping me beneath the covers: Crabby the kitty sleeps off my left shoulder, Nik, a larger kitty is planted directly on my chest, and to my right competing for space, lay Maddie, my adorable eight year old with Blue, our jealous Border Collie mix, sprawled across her tiny body to rest his head on my right shoulder. 

Nik and Blue take turns licking my face, and Nik sneaks an occasional nip on my nose, until I pull one of my otherwise pinned arms, out from under the covers and give in to petting them. And so another day begins...by the time I get up, shower, dress and take my meds, I'm about two hours away from a nap...

So much as cold temperatures are not my preference, I would be pleased with a nice frost to put an end to current unproductive schedule.

Uncommon People...

Twelve years ago this month, I began working at a family owned business in the height of their busiest time of the year, the holiday season. The atmosphere was a bit crazed at the time, since they had just gone live with their new ERP system and well…the organization was reeling from strong growth and adapting to both organizational and functional changes. I wasn’t sure about what I stepped into at the time but I soon realize how fortunate I was…This was no ordinary workplace, and these were not ordinary people.

Over the years, I was blessed to have the opportunity to grow and learn through challenging assignments, and the rewarding experience of encouraging others to achieve their potential. I worked with a team of people who were capable, responsible, and resourceful, and they had a unique talent for using humor to diffuse stress. I also had the privilege of developing lasting friendships, and getting to know the people I worked with and their families.

The business was a good combination of large enough to provide challenge and growth, yet small enough for everyone to be known for their strengths and contributions. It was not unusual for the Owner or CEO to greet staff members by name while passing them in the hallways. It had the feel of being home to me for many years. This in of itself made it difficult to accept the fact that the progression of my disease would eventually force me to give it up much sooner than I wanted.

While the physical changes were gradual, it did become apparent that something was wrong by the end of 2010, and although my co-workers didn’t pry, they began to show concern, and offer assistance when I needed it. Those closest to me knew of our pursuit to figure out what was causing these changes in my physical condition, and when we confirmed the diagnosis, the word began to get out.

I will never find words to accurately describe the overwhelming support and caring I experienced in this organization, from the Owner, CEO, and Executive Team, to those in my group, and others, outside of my group, with whom I rarely worked. They were kind and generous beyond any expectation. One incredibly bighearted individual provided a scooter that made it safer for me to get around in the building, co-workers held doors, waited patiently for me to pass, and smiled or joked with me to normalize what could otherwise be awkward.

They sent personal notes, cards, and thoughtful gifts, offered prayers, made meals for us, took me to lunch and even doctor’s appointments. One special family drove out of their way to take me to and from work for eight months, often treating me to a Starbuck’s venti black coffee on the drive in. They carried my bags, my lunch, my walker, and let me grab onto them, as I moved slowly to get in and out of the building.

When we formed a team to participate in the walk for ALS, they mobilized a fund raising effort that collected thousands of dollars in donations to support ALS patients and their families, most of which came from their own pockets. They additionally provided donations for any equipment I might personally need.

This is no ordinary company, and these are not ordinary people; they have been my family for a long time, and this is only one example of how they take care of their own.

I can identify with what Lou Gehrig was feeling when he gave his Luckiest Man on the Face of the Earth speech at Yankee Stadium, because for the last twelve years, it has been an honor to work with such a fine group of people and for that I am truly grateful.

My Tables Manners are Appalling!

I’d like to apologize to those of you who have had to sit through a meal with me recently. While I am still the proud owner of a copy of Tiffany’s Table Manners for Teenagers, had you the experience of watching me try to employ the use of common utensils,  such as a fork, spoon, or heaven forbid, a knife, you would think I was raised by a pack of wolves.

 I realize it doesn’t help dispel the allegation, when I try to pry the cap off the bottled water with my teeth, but the rubber band trick I was using no longer works for me. It seems that between the loss of fine motor skills and muscle tone, even a spoon is not safe in my hands, and most foods simply do not defy gravity long enough, to stay on the utensil until reaches my mouth. Luckily some gets in, but the rest either falls on my plate, the newly laundered tablecloth, the napkin in my lap, or if Blue is really lucky it goes straight to the floor.

This ongoing struggle has played out in several ways: it takes me a really long time to eat; I am usually tired and still hungry by the time I give up. Chris will sometimes cut my food for me, which is thoughtful at home, but could become embarrassing if we start to do it in public.  Blue eagerly awaits  his  just rewards during dinner, and on a happy note I weigh less than what’s printed on my driver’s license, and how many of us can honestly say that?

I bring this up because… well, now that it’s November, and the holiday season will soon be upon us, some of you may want to take this into consideration before adding me to your guest list for a holiday gathering. Or, if you are willing to take the chance, be prepared to find me a dimly lit place, away from your nice china and throw me some finger foods.

Don’t worry if it’s a more formal setting, I can still remember to discreetly check my hands under the table so I don’t mistakenly use the wrong bread plate or water glass… 

I’ve lost control of motor functions, not my good sense.

God is Always Working Upstream…

I don’t remember the first time I heard this phrase, I suppose it was at a time in my life when things weren’t quite going the way I wanted, and someone gently tossed it out in hopes that I could grab onto it and believe that it was all for the best. While at the time, I doubt it felt like anything more than a Band-aid on a gushing open wound, it was recorded somewhere in my psyche, so one day it could be summoned after the bleeding ceased. Many years later, I stand firmly on this belief.

It has also been said, that if you stand too close to a mural, you can only see splashes of color, but as you distance yourself from it, the image comes into focus; herein lays the problem.  We make our decisions based on our particular perspective at any given moment in time, without the benefit of knowing what’s ahead of us, as Julia Sweeney says, we make plans and God says Ha!  

So it seems, that even as a self proclaimed pragmatist, I’ve taken some wrong turns, and made some poor choices; I’ve also had my fair share of events outside of my control, wreak havoc in my life. But with distance, and reflection, I began to see the safety nets, which were carefully placed around me, before I ever realized I needed them… and how some of these events shaped the woman I’ve become.

Therefore, had I not had the experience of losing my mom, my younger brother, and my dad, each independently before I reached the age of thirty, I might not have realized how fragile life is, and I might not have pushed myself so hard, and I might not have taken the risks that made my life so rich.

I met my husband, Chris about a year before my first symptoms appeared, and we were married just shy of 6 months before my diagnosis. Who could have ever imagined that our commitment for better or for worse, in sickness and in health, would be tested so soon? 

These days I tend to dwell in Joshua 1:9 “Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the LORD your God will be with you wherever you go.”, because I can see the foundation of support around me, and I can trust that He is still ahead of me preparing the way... Chris standing beside me is all the proof I need.

Love and Other Drugs

Shortly after learning that the Neurology Team at the Mayo Clinic could not find any evidence contrary to our original diagnosis, we decided to take a break from reality and head for the local movie theater.  We needed to stay another night for the appointments scheduled the next day before we could travel home, so it seemed like a good distraction.

We looked at the listings on my Blackberry and remembered we had seen a trailer for a romantic comedy called Love and Other Drugs, with Anne Hathaway and Jake Gyllenhaal, and decided it was just what we needed to escape for a short time.

Ironically, when we originally saw the trailer, we must have missed the part that set you up for the underlying story line in which Maggie, the lead character played by Anne Hathaway, was struggling with the early stages of Parkinson's disease.  

I'm certain that for a typical couple it was an entertaining film. It could undoubtedly be classified as a chick flick, but the men in the audience were treated to seeing plenty of Anne Hathaway, while the women were likely agonizing over the sad love story. Nonetheless for us, in the midst of dealing with our own situation, this was anything but an escape from our reality.

In the end Jamie, played by Jake Gyllenhaal decides that Parkinson’s Disease or not, he loved Maggie and he wasn't going to walk away… we held each other and wept through the movie.

Nearly a year later, I can tell you that this disease has not torn us apart, if anything, I believe it has made us closer, and our commitment stronger. That’s not to say it doesn’t challenge us most days, it does... but with humor, grace, and love, my husband, Chris, gets me through each day…