Saturday, May 30, 2020

How is an Insulin Pump like a Pandemic?

So I'm a fairly new to type 1 diabetes parent.  My son was diagnosed at age 10 less than six months ago.  I'm also an educator during a global pandemic that has closed schools across my country.  I've been working / teaching from home since March 13th and it is now May 30th.  Our county is on a stay home stay safe order and while other parts of our state are moving to slightly fewer restrictions, my county didn't meet the minimum criteria for that yet.  Certainly, I'm not an expert at any of these things but I have come to an understanding with my own emotions at least.

It seems there are a lot of powerful feelings related to the pandemic and the resulting recommendations.  There is fear, loneliness, anger, regret, resentment and the whole gamut.  I had a conversation with a friend who said she'd just rather die than keep living with all these restrictions.  She said it was "no kind of life".  

I talk to educators and parents every day.  They are tired, they are frustrated, they are done.  They want life to go back to normal.  Kids back in school, economy open, going to work, coming home, enjoying their time off, going out on the town and all that comes with a healthy world.  

Many want to blame someone, to point a finger at another person and say "you are doing this to me and it isn't fair."  To feel that this situation is being forced upon them (which it is) but they want a person to be responsible.  I understand.  If a person, or government, or conspiracy, or whatever were behind this then it can be changed, channeled, fixed.  I have a lot of empathy for their feelings and their struggle. They want someone they can call and tell that they need X,Y,Z for their quality of life. They've tried to be good and follow the rules but they don't want to wait anymore.  

On a separate and yet related note.  We've been waiting for our son to be approved for an insulin pump by meeting all the requirements of the insurance company which included being six months post-diagnosis.  That means we should be able to get started on pump therapy in June. We've been working with our medical team and the pump company to check off all our requirements.  There were concerns about the inability to attend training during the pandemic and how could we meet those requirements at a time like this but these issues have been resolved and creative ways have been found to meet those.  We thought we had things set up and ready to go and have been quietly marking the days off in our minds to a time when our son's quality of life & diabetes management would be improved as he moved from multiple daily injections to insulin pump therapy.

About three weeks ago, I got a phone call from the insulin pump representative.  The insurance company has suspended new prescriptions until the next update on the pump we've been working towards.  We were planning to get a pump at the beginning of June and instead we may have to wait until the end of July or beginning of August to get started on the pump.  

I felt all my feelings about this.  Anger, resentment, sorrow, and exhaustion.  I want to be angry at someone.  I want someone to blame so I can call that person up and tell them how important this thing is to me and my family.  How it will make our quality of life so much better.  How we've been struggling and waiting for this to make it better.  We've tried to be good and follow the rules and we don't want to wait anymore.

So How is an Insulin Pump like a Pandemic?

Maybe you already know what I'm about to say here.  The pandemic SUCKS! Waiting for an insulin pump SUCKS!  Yes that is true on both counts but it isn't the only way these two things are alike.  The insurance company won't let us have an insulin pump!  The government won't let us live our lives! I hear these statements more as demands in my head as I read them back.  These aren't really the truth of the situation on either count.  Does it change if we ask them as questions...Why won't the insurance company give me an insulin pump?  Why won't the government relieve the restrictions?

If I assume BEST INTENT then the answers are the same.  Waiting SUCKS but it is necessary for the greater good. I'm not knowledgeable enough to make all the decisions because I can't be knowledgeable in everything.  I have to rely on experts. What has the greatest positive affect on me may not be best for the majority.  I have to rely on the systems and structures that are part of my country; things I've had a vote in. Are all the elected officials people I chose?  NOPE but I have faith that the system will keep the greater good going.  Maybe I'm naive.  I know an individual person can be selfish, I'm proof of that all on my own.  These people, in these positions, are working under a set of guidelines meant to account for the most positive outcome for the majority.  

We have leaders on purpose whose job is to work towards a greater good.  My medical providers and the insurance company are also working towards a greater good.  In order to work towards a common good that supports a majority then...


I've talked this over with some of my very close friends and we all come to the same conclusion.  We don't always get what we want right now, in this moment, even though we may be good and deserving and doing all the right things because we live in a society and a community.  This is HOW I support my community.  Vote, work, try, live, laugh, love, accept, empathize, and assume best intent.

Again, I know it seems naive. I know not every human in a position of power is putting the greater good in the forefront of their mind/actions.  I know the insurance company has a bottom line.  I choose to believe most PEOPLE are good and I choose to believe that those in positions to work for the good of society will do so.

If our leaders threw open our world today and it was too soon the losses would weigh on all of us for the rest of our lives.  

If the insurance company ignored their policy and it had a negative impact on an already compromised group's health we would hold them accountable.

Our community will eventually move forward with a lessening of restrictions and my hope is that it will be well timed and the cost won't outweigh the benefit. My son will get on insulin pump therapy and my hope is that the cost won't outweigh the benefit.

I'll wait.  I'll do what I can.  I'll check my privilege and entitlement and trust in the best intentions of those who are meant to advocate for the welfare of the whole community.  I don't really have a choice in this waiting or how long it will take but I always have a choice.  I can choose to make it miserable and filled with anger and resentment or I can choose to make it a moment of grace, patience, love, and acceptance.  In a life that may last 100 years, this time will seem but a moment when I'm looking back.  I'd like that moment to be one I'm proud of.

I appreciate my life in all of its highs and lows. 

No comments:

Post a Comment