The waiting game

It's been 19 days since I heard the words Parkinson's Disease.  It's been a very long 19 days with an interesting cocktail of emotions.  I am much like the last nearly 10 months playing the waiting game.  This time however the waiting game has an end in sight?  Every time the phone rings I rush to it hoping, praying that it will have a (506) area code.  Waiting for that appointment date to see the Neurologist that specializes in Movement Disorders office to call  Waiting for the appointment with the 'Parkinson's expert' to confirm the last Neurologists suspicion of my diagnosis.  The call has yet to come.

When that kick to the gut happened in New Brunswick 19 days ago, after the feelings of relief, anger, fear started to subside (for a minute.) I thought to myself that I wasn't sure I could handle saying those words over and over again to each person I'd meet.  I had been flooded that day with very caring messages of concern and support leading up to my appointment but the thoughts of running into someone, having them ask how my appointment went seemed debilitating to me.  So, I made a decision.  I decided that rather than have to say those two fearful words over and over again I would simply go home, put my girls to bed, tell them I loved them and then sit quietly and post it on facebook.  To me in this moment it seemed like the only logical response.  After all, I've always been an open book kind of person, so this seemed logical. The only way to let everyone that was going to ask when they saw me know at once so I wouldn't have to repeat those words.  So, I did just that.  Upon posting my 'possible' reality of the future the outpouring of concern, care and support was indeed overwhelming.  I have since received countless calls, texts, emails and messages of love and support.  It was and has continued to be extremely comforting.  People I hadn't had much interaction with for years were reaching out to me with advice, books to read, songs to listen to, quotes and true heartfelt messages.  Offers flooded in of drives to appointments, a friend to talk to and so much more.  It's truly been overwhelming.  Often when a crisis happens in our lives of any magnitude we have a set circle that we know will be there, we have an outer circle of that that we assume will be there and yet another that we in our own minds expections think will be.  Yet often some of those assumptions are very wrong and it can often hurt.  However I truly think it's outweighed by the ones that touch you that you would never expect it from.  Now by that I do not mean that you didn't think those people were good, caring individuals.  What I mean is that they were not in one of those 'circles of assumption' and often they are the ones that can bring you to tears and give the most emotions unexpectedly.  In a good way.

Now back to that decision to just put it out there in one shot, type those two words and then I could discuss it with those I ran into without having to repeat them.  They would already know, why would I need to say them aloud again?  Well, I don't regret that choice.  However, that said I do feel that I may have misjudged it being easier.  My first encounters after the 'post' resulted in beautiful hugs with no words said while I positioned my eyes to the ceiling to stop the welling of them.  Then came some sincere words of how sorry people were along with those unexpected offers of help.  All of which seemed to hit me harder than I had expected.  I guess what I'm saying is that I thought not saying the words out loud would make it easier to accept comfort and kindness without being upset.  But rather I think it gave people time to think about my situation and react in a different way than had they had a reaction of shock.  Not necessarily good nor bad, just different than what I had in my head, and to be honest, I don't think any easier for me.  I caught myself the following Sunday in Church being my usual bold outspoken self but in a way I realized after the fact I did not like of myself.  A lovely member of my Church came towards me to give me a hug and in my upset state I saw her eyes and to me all I saw was sympathy.  I'll be honest, it bothered me.  I even was as rude to come out and say "don't give me that I'm sorry for you look".  Realizing after the fact that although that may have been a glimmer of the look it was actually a fine fellow Christian strong in faith giving me a hug as a sister, letting me know I was in her prayers in a sweet and yet unspoken way.  Shame on me...

So, can I say all my reactions to everyone's support and love have been the way I should be, I suppose not.  But what I can say is every touching message, prayer, hug and encouragement is appreciated.  And I truly do feel the love in them all (even if my reaction in that second is less than gracious).  I honestly can't explain that much further other than to say I'm still trying to process a possible fate for my future that has yet to be fully confirmed as I continue to play this waiting game.  I try and stay positive as best I can even on the really bad shaky weird things happening to my body days.  I will continue to try and keep pushing through and remain grateful and positive even while playing 'the waiting game'.