Embracing Community in Times of Crisis


 

Sometimes in life, it takes something bad to happen for us to pause and appreciate how good things once were. I used to think of our lives as before and after our Sam was diagnosed with Type 1 diabetes. Fast forward twelve years: he’s a senior in high school and the Coronavirus is sweeping the country. The cacophony of chaos in the world is now pulling our attention into dark territory, channeling voices of fear and uncertainty. It’s almost as if time has slowed down to a crawling pace; giving us the chance to inhale and catch our second wind.

Always a battle

Dealing with any chronic illness is an arduous job packed with hundreds of additional decisions to make a day. Ordering supplies, planning and packing become essential, life-saving chores. We take the burden in stride, but then become our harshest critic when thing go wrong. From personal experiences, I’ve learned that dwelling on our missteps serves no one. Remember that Billy Joel song? “We’re only human, we’re supposed to make mistakes.”

Just last year I made a doozy when we sent our two teenagers to Houston to visit family – I forgot to pack additional insulin pump cartridges for our son. Halfway into the trip, Sam called to say he ran out of cartridges. We’ve taken dozens of trips throughout the years, driven and flown across the country, camped in remote areas, and I’ve never forgotten anything. I told him to check again. We went over the list together; extra insulin, needles, blood sugar meter, back up meters, test strips, infusion sets, ketone strips but no cartridges. In a cupboard, I found the sandwich baggie of them that somehow got left behind. Anyone who’s ordered these types of supplies knows that you can’t just walk into a pharmacy to get more; in fact, you only have a few options and they all take twenty-four hours to ship. It didn’t matter how many times my son and husband told me it was okay: two thousand miles away, I spent the entire night consumed with guilt and worry, crying on my husband’s shoulder. Sam spent the night waking up every two hours to do blood sugar checks and give himself shots. He learned a hard lesson and so did I, but meanwhile we still had to find cartridges.

Somehow, on a hunch and a prayer I managed to look up a Facebook/Beyond Type 1 friend whom I’ve never met – and asked for help. It was a miracle really. I was a complete stranger to her, she could have said, ‘Sorry,’ but instead this angel went to extraordinary measures for us by reaching out to her community to find me the specific cartridges I needed for Sam’s pump. Her son had a different pump, but a friend of her’s (another angel) met Sam and my sister-in-law to give them an exceeding amount, beyond what he needed. I paid her back when I got her address, but at the time I don’t think they knew the depth of my gratitude. Not to mention the many thanks to my sister-in-law for driving Sam to another county, and our family in Houston for taking such good care of him.

When you need help, ask

The chances are in your favor in the Type 1 community with a million out-stretched hands, and general well-wishers ready and willing to offer not only advice, but whatever you need to help you get by.

I’m embarrassed to say I ran out of supplies once before the Houston trip. Not long after Sam was diagnosed, we depleted our infusion sets before our new order arrived. Luckily a neighbor, whom I met through a friend, had the same insulin pump as Sam, and gave us a few loaners. Another neighbor, a T1D dad who lived around the corner from us, went out of his way to offer advice and help us when Sam was first diagnosed.  We were so scared in those early years and his helpful words still bring me comfort years later.

Get to know your neighbors

Once, I bonded with a fellow writer at a conference, where I divulged that I had a son with Type 1 diabetes. We became fast friends after she told me she had developed late adult onset T1D. One night, when my son’s pump stopped working, I called her in tears. My husband was out of town and I couldn’t get Sam’s pump to prime. She drove over to my house at ten at night – because these problems never happen in the middle of the day – and got the pump working again.

I wouldn’t have known these angels to receive help from them, had I not been as forthcoming about Sam’s disease. Nor would I have met them if I wasn’t on Facebook or involved with my community. You don’t realize these tiny miracles for what they are, until after the fact. If not for their help, I would probably be in a strait-jacket staring at a cement wall somewhere. Instead, I am now willing and able to pay it forward anyway I can.

As a writer and avid reader, I peruse tons of articles and social media sites a day, and if there is one thing I’ve learned, it’s to think before you say or post something. Negativity helps no one. I’ve found that depressing, bleak posts can linger in your psyche long after you’ve read them. Your views can really impact others. On the other hand, knowing how meaningful certain tweets can be, spreading love and encouragement, cannot only change a person’s day but has the power to alter their lives.

One kind word can mean the world to someone. Life is hard, especially with a chronic illness and there is no question diabetes stinks, but what a wonderful support system we have in place within the T1D community! People can be quite beautiful, and they have a wealth of knowledge on a much deeper level sometimes than our medical professionals.

Pay it forward

I heard once that Jackie Kennedy Onassis said that motherhood was the most important job on earth and if you mess that up, whatever else you do doesn’t matter very much. My son and daughter are edging their way to adulthood now, and I hope that they’ve learned from my mistakes and watched how I forgive myself. I hope they’ve learned from the tiny mercies shown to us, and that when someone’s in need, you offer a helping hand or an encouraging word without blinking. I hope they stand up to injustice when they see it, and become advocates for the less fortunate, like those struggling to afford insulin.

As I reflect in this trying time, I see that through Sam’s diagnosis, we’ve learned and grown so much because of it. It’s made us who we are – all of us. And though this is a flawed, imperfect world, we truly have a family beyond our own. No amount of social distancing can diminish how interconnected we truly are. The silver lining through this all is that we have each other.

 


Check out another piece by Erin – Sibling Envy.

Read more about Coronavirus and Type 1 diabetes here.

WRITTEN BY Erin McShay, POSTED 03/27/20, UPDATED 03/27/20

Erin McShay writes frequently for Beyond Type 1, and is mom to seventeen-year-old Sam and fifteen-year-old Claire. Sam was diagnosed at age four, and recently celebrated his T1D twelve-year anniversary. Through fundraising their team “Yosemite Sam” has raised over $36,000.