Monday, October 29, 2012

Time enough...

"The butterfly counts not months but moments, and has time enough."  -Rabindranath Tagore

I came across this quote recently and it has given me a lot to think about.  What does it mean to have "time enough"?  Is it even possible, for any of us, to feel there is enough time?  When I think about it in terms of enough time, the truth is, there isn't enough.  I'd like to think it is possible, and in fact I used to think that when I got older, much older like in my late 70s to 80s, I would reach a time when I felt it had been enough, but when I consider it in relation to my situation now, I can't see it.

When I first received my diagnosis, the main source of the overwhelming sadness was that there just wouldn't be enough time.  The sense of loss came on quickly and dragged me down into waves of tears and frustration.  Dan was awesome in helping me get through those days.  He held me through it all and kept reminding me that we had to live each day, enjoy each day, laugh each day, but that it was, of course, ok to cry too.  He said we just had to make each day count and I knew then, as I do now, that he was right.  Even though we know that this life ends in death, few of us know when the end will come until we are staring it in the face.  So, while we have the opportunity, we live and make the life we have worthwhile with all the resources we have available to us and when that isn't enough, we find a way to do more, do better, until we have achieved the success we were aiming for.  The definition of "success" is different for all of us, but the desire to succeed at this life is deeply rooted in most of us.

The more I thought about having enough time to do, say, share, be all that I want with those who mean everything to me I realized that no, there is not enough time, maybe there could never be.  However, knowing that time is all we have, I came to the conclusion that it might be possible to have time enough to enjoy the moments that make lasting memories, to share the love that is never ending, to impart the knowledge that life is what you make of it so make sure you don't wait for the "right time" but just make the time right.  It is all in the perspective you take.  There may never be enough time, but after a lot of thought I now feel that, just maybe, there can be time enough and so for now, that is something to strive for. 

Friday, October 12, 2012


 One of my cousins has been living in Japan for the past year and is working as a teacher there, teaching English.  He writes a wonderful blog about his experiences called "Take Your Shoes Off, Watch Your Head".  In his post from August 6th titled 報道 - Take Your Shoes Off, Watch Your Head: Yin and Yang: From the Outside In he wrote about how assumptions are made about him as an American living in Japan.  When I read this post, I really understood his feelings and frustrations on a very personal level because I find people make assumptions about me quite often these days too.  Some create positive experiences, others leave me feeling frustrated or even angry.  The thing about my current state of health is that while I may have a "life-ending" illness, I look healthy and unless you knew me before, its not obvious that anything is "wrong" until I speak.  Since ALS is not common and most people know very little about it, it is highly unlikely that people would ever make that assumption.

As I've mentioned before, when I interact with people who don't know me, they often make the quick assumption that I am deaf.  If they know sign, they will begin signing to me automatically.  Fortunately for me, because most of them know more sign language than I do at this point, they also talk as they sign.  Since I am still a beginner, this is really helpful.  Just to be clear, I do not try to pass myself off as deaf.  I always let them know I am hearing unless the interaction is too quick to make it worthwhile.  I don't wish to embarrass (most) people either, but on the other hand I feel they should know that not all of their assumptions are correct.

Most of the experiences I have are positive and people are thoughtful, helpful, and kind, such as employees at the library, post office, grocery store, Target, WalMart, Dunkin' Donuts, etc.   One Target employee recently typed the answer to my question into his phone before I realized what he was doing - I thought he was doing a stock check.  On the other hand, there are a few situations where people react differently when they jump to conclusions.  One woman (in her late-40s?) I encountered at a local business groaned as soon as I began to speak to her, thinking I couldn't hear her I'm guessing, and then slowly and a little too loudly asked me to wait a few minutes for the owner to return.  She then went to the back and had an unprofessional phone conversation that I can only hope she assumed I couldn't hear.  Then the other day I encountered a man who said something very rude and wildly inappropriate after assuming I couldn't hear him.  I gave him the one finger "sign" that I've known for years and figured I was lucky I was in my car and not face to face with him because I honestly might have hit him.  Three other times people have come to the door and tried to sell me things or asked me to support their candidate but once I speak, they find a way to leave very quickly.  At times like this, their assumptions are helpful.  At other times, I find them rude or at least insensitive.  It's funny how people make such quick assumptions and think its ok to act in a way they wouldn't dare act if they took the time to find out that I can hear.  Not long ago I heard one person, whom I've never met or spoken to, describe me as deaf and mute to another person.  All I could think was, "Why?".  Why was it important for him to share something about a complete stranger, especially since he was wrong and had no idea what he was talking about?

The truth is, we are all guilty of making incorrect assumptions about others from time to time.  I know I am guilty of it myself, but over the years I have really tried to learn from mistakes I've made in dealing with other people.  This illness has left me in a position of depending on others for help at an age decades younger than I ever would have expected and in ways I never imagined.  I have always been very self-reliant, the kind of person that just gets things done, but now I can't even make a phone call for myself.  I can't call to schedule an appointment for a hair cut or a dental cleaning or to have my dog groomed or to book a flight or question my cable bill or whatever.  I also cannot go through a drive-thru to order food or drinks.  While I am not a big drive-thru person since I don't eat a lot of fast food, there are times when I would like to use it to get iced tea from Dunkin Donuts or lunch to go from Panera.  In some ways these might seem like frivolous things to worry about, but its the loss of freedom to do simple things I took for granted, and should take for granted because they are so simple, that is frustrating as well as the knowledge that this is just the beginning.

I guess in sharing all of this I hope that, as you encounter people day to day, you might take a moment to consider if the assumptions you are making about them are correct or are you making an assumption that is not only wrong but might be hurtful.  It could be the person in the electric scooter at the store in front of you, the clerk who gave you the wrong change, the person who seems to have no patience with anyone and is rude because of it, the child or teen who acts out or simply ignores you, or whatever you may encounter has more going on than meets the eye.  Everyone has a bad day now and then, yet other people might be dealing with more than you can imagine.  Sometimes its so easy to forget when we are dealing with our own troubles and its easier to blame others for their bad behavior than it is to remember to have compassion for them.  Of course, some people are just plain insensitive and mean on a regular basis.  They may not have an excuse, or maybe they were dropped on their heads as babies, I don't know, but I would rather try to spare a little kindness for them than let them ruin my day.  I figure if I can get through each day and keep smiling, I've done my part to keep the world in balance for now.