3 words.  9 letters. An idiomatic informal greeting, not requiring a literal response.

A simple phrase spoken millions of times a day in different languages across the globe.  HOW ARE YOU.

A question asked with such haste, because we believe that it is the polite thing to do, hoping for a short response.  Except this is a question we often forget to  ask our carers.  We ask our carers how the patient is doing, are the children coping – but we fail to ask the most important question, HOW ARE YOU, HOW IS ALS TREATING YOU?  This insidious disease effects our carers equally if not more.  They often mourn the loss of a love one, a way of life and a sense of freedom for a long time.  They are our first responders and take care of our needs before thinking of themselves.  Putting their needs 2nd or most times even 3rd or 4th in line.  It’s simple.  Our first question should always be directed to our carer, and not in an idiomatic manner.

The truth of the matter is, I have ALS and that will not change.  My dependancy on others will only increase.  Placing an un-reconcileable burden on those nearest me.   Antoinette is my first responder, my carer, my friend and at the same time takes care of everything school and home related.  It’s a 100hour week at 100 miles an hour, commanding a team of 2 part time soldiers (Tallulah and Lalitha).  A sudden change from a well balanced workload a few months ago.  The strength they summon from deep within to manage the change is admirable!  They wake me, get me up. Take me to the shower, dry me, dress me.  Making sure I smell good and clean my glasses. Then get my breakfast ready and sort my medication. Get me into the car and off to work after the school drop off or hospital appointments and then the reverse in the afternoon and evening.

Unfortunately without empathy for our carers the burden of care becomes too much and they find themselves in a stressful filipendulous moment.  So let’s take a moment and ask HOW ARE YOU…. wait!  Wait for the answer, listen and engage.  Small gestures are also easy, a coffee, a biscuit or a 30 minute break – it re-energises, lifts the moral and gives them the courage to continue caring; being a first responder – being a hero.  Let’s find a way. Especially this month, The National Family Caregivers Awareness Month – to create a support network around our caregivers ensuring they are not consumed by ALS.  Allowing them to catch a breath and a sense of normality…without them the ALS journey is daunting.

#ChallengeALSDXB