Thursday, May 19, 2016

Surviving Selfishly; Why I Must Apologize

Friends, I need to apologize.  I know you wont want me to, and will ask me not to, but I have to.  It's the right thing to do.  It feels right to me, and because of that I must.

Having a chronic/life limiting disease such as mitochondrial disease is extremely overwhelming.  It overtakes every single part of your life without you even realizing it.  It slips in slyly like a boa constrictor and slowly squeezes the life out of you.  

With the rapid onset mitochondrial disease you don't have the time to put the oxygen mask on yourself first, so that you can reserve the strength and energy to help those around you cope.  You are constantly grappling at one shoe while the other is falling off.  You are trying to take steps forward whilst being thrust quickly backwards.  It rapidly becomes a situation where most times instead of living you are merely trying to survive, and because of that selfishness becomes a mechanism of survival.  It isn't an excuse.  It is the reality of an unfair situation, and it doesn't feel right, because it isn't.

Good friends make it really easy for you to becomes "necessarily selfish."  They "understand" when you go into hibernation for weeks while you muster up the strength to keep living, even if it means you've missed their important life events.  They don't get upset when you have failed to ask how their days are, even when you have been speaking to them for an hour about your day.  They don't bat an eye when you forget their birthdays, even when you are speaking to them on their birthday.  They don't expect you to reciprocate childcare (nor would they ask you to when they really need it).  Thus the poor habit of a one sided relationship begins.  It's easy to happen even to the best of friends, even when you don't mean for it to happen at all.

Why? Because tragedy is supposed to be temporary.  The amount of one sided care taking and the reception of that level of care is supposed to be short term until you get back on your feet and are able to create a normal life for yourself.  With a disease that is constantly progressing that is nearly impossible.  Your typical is constantly changing, and therefor your loved ones are constantly trying to help you pick up the pieces and move on again.  Mitochondrial disease doesn't just effect you, it effects everyone around you.  It is poisonous.  

So, I apologize, because I have to, whether the contagion that this disease has created is my fault or not. I am profoundly sorry for all of the days that ended before I asked you how you were doing.  I am sorry for all of the times social media had to remind me it was your birthday before I remembered.  I'm sorry for all the days that passed before I responded to your text messages, although I appreciated them immediately.  

Please know I could not get through a single day of this disease without you.  Your efforts never go unnoticed.  Your strength to stick this out with me is nothing short of admirable.  You are a large part of my ability to fight this disease.  Thank you every day for everything you have ever done and ever will do.  

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