In early January I suffered a pretty major medical emergency: out of nowhere and quite to my surprise, I suffered a ruptured colon and sepsis. Emergency surgery quite literally saved my life, and I woke up with a new diagnosis (diverticulitis), an appliance attached to my body (colostomy) and a long road ahead that would include a hospitalization, a couple of months with home health care, more surgery and then we will see.
I wasn’t diagnosed with an incurable disease like my child with Type 1 was almost 22 years ago. And yet, my so-far short journey through this has taught me a lotabout living life with a medical condition. You know, since I raised a child with an incurable disease, I think I know just about everything (just ask my husband!). What I have learned is that while I may have knowna lot from my experience as a mom, I did not understanda lot. That is, while I thought I had it all figured out, the patient point of view is so totally unique, not one of us who has not been there can fully fathom it, hard as we try.
Some things I learned were new. Others were like fortifying experience to back up – or proof otherwise – something I’d thought I understood for years. It was interesting, too, to see how many things this experience actually shared with diabetes life. Here are some highlights as I think it all through.
*People want to blame, and I think I know the reason: I remember this so well from back when Lauren was diagnosed with Type 1 in 1997. “Did you feed her wrong?” “Does it run in your family?” The questions people asked were their own form of digging. They wanted to understand why my small, healthy until then child has been stricken down by this disease. And it bothered me. Yet at the same time, I played that very game alone in my own thoughts. “They put her on that rice cereal in the NICU. Could it have been that?” “I had a medication when I was pregnant. Maybe?” It took a long time for me to quell those voices in my head, so the ones in my neighborhood did little to help.
With this, it’s the same. My husband came in the door upset one night and said “Do you have any idea how many people have asked me what you did wrong to make this happen?” he huffed. “Like … ‘what did she eat that she should not have?’ And ‘Did she not have regular medical check ups?’ It’s horrible!” What I didn’t want to tell him was that I was, just like when Lauren was diagnosed, doing it to myself. Even thoughmy doctors whom I trust had told me it wasn’t about doing something wrong, I was thinking “Oh gosh, I am still overweight and I was even more overweight in the past. Is that why?” and “I was eating super low carb but a lot of fat just before. Did I do it to myself?” All crazy.
But it kind of makes sense. The friends with the questions? Be it a diabetes diagnosis or a ruptured colon out of nowhere, they just want to arm themselves with confidence and protection. They think: well, if I know what caused it I can avoid that, and it will never happen to my loved ones or me. They don’t want to accept the truth: that lousy things happen for no reason. They want to insulate themselves from the chance of (fill in the blank). What they don’t know that I do is this; sometimes-bad things just happen. No fault or blame assigned.As for my guilt, I was able to let go of it for my child. Will I be able to for myself? I cannot imagine the waste of time, yet the powerful lure, of going over and over in your head a million “whys?” I have to stop. I’m working on it.
*Wearing Appliances is not for the faint of heart: This is the first time I’ve said it out loud: I have a colostomy. It’s on the left side of my stomach near my belt line (gah! Unlucky placement!). I’ve spent the past weeks learning how to manage it, and trying with nurse help – to figure out the best appliance for me. Now, I am the mom who has said to her child over the years “They cannot be that annoying. And they make your life better.” True, and also true a pump or CGM and a colostomy are two very different things.
But here’s the thing about an appliance on your body: It is always there to remind you. I have not moved past the pain totally yet (don’t worry – it’s more discomfort now!), but when I do, I would like to imagine I never think of this thing other than when it needs attention. But that’s not possible because …. It’s there.It pulls on you when you move a certain way. It bumps out from your clothing. It messed with your style. It’s not a part of you; it’s an attachment. And it feels that way. I will always want my child to want to use a CGM and I will wish her to want to use a pump because they do so much to make it less stressful in daily care now. But I will never, ever suggest that you get used to it and it’s just a part of you. It’s an attachment. And you feel that both physically and emotionally. I get it now.
*Dr. Google is a bad, bad man (or woman? Or Cyborg?): If you’ve seen me speak or reached out for help with your child with diabetes or read my books, you know one of big, big themes – particularly at the start of it all is this: Do NOT ask Dr. Google for input. Do not join every random FB group you can just to get heard (and to read more than you might need to). DO trust your medical team. DO find some in real life friends (new friends are fine!) who understand what you are going through first hand. DO let them suggest on-line support pages and places that are super cool. Again for the balcony: Do. Not. Ask. Dr. Google.
So imagine my shock when, about four weeks in, I felt myself drawn in a powerful way to …. Dr. Google. I chose some keywords, searched and started reading. Within HOURS – maybe less time – my entire psychological health shifted. I started panicking about things that are not even happening. I started worrying about the future. I became petrified of a host of crisis that apparently were right there waiting to happen to me but I had no idea. I called my daughters and told them each how I was feeling. And both, with that kind of exasperated voice only a daughter talking to a mother can use, said ‘Mom. What do you always tell everyone?? Stay off the interwebs! Call your doctor or nurse instead!”
And here’s the thing: I had daily home health care at the time, from a nurse I trust and like. I have my surgeon and his PA to call. And yet… the draw. I stopped myself right away, hoping to cut the damage. I think I have. But I wish I’d never gone there. So from that I learned two things: I’ve been totally right about that. Dr. Google is bad. But also this: Dr. Google is a master at seduction. Avoid him, her, or it!
People are good and they want to help: It can feel quite ostracizing, a major medical situation. No one really knows all you are going through. But I learned this fast: everyone wants to help. My good friend Julie set up a meal train while I was in the hospital and within hours people were signed up to feed us for months. I was embarrassed. We’re not financially needy; we can order out. I didn’t want to be a pain. But as one friend after another came by to drop off meals, I realized something: the meal train was giving them a way to help me feel better. I told one friend how I felt funny about it and she was quick to shut that down. “Moira,” she said, “This is helping us! We want to support you and this makes it easy and not stressful for you!” I will never, ever forget the amount of support I have felt through this. I want to always remember, too – and everyone with diabetes or any other medical situation to remember – people want to help. They might back away because we push them away out of politeness. The meal train made it impossible for me to follow that usual pattern, and I’m so thankful for that.
I have more to share that I have learned. But This is long enough for now. And for now, this is an update of where I am at: I “graduated” from home health care yesterday (so proud! But no diploma or even sticker?). I have developed what is called a parastomal hernia and it is pretty horrible and stopping me from feeling good. My body is still not ready for a second surgery, so they will fix that when I have my second surgery, most likely at the start of May. I’m working at staying positive and embracing that this, unlike my child’s diabetes, is hopefully temporary.
I’m avoiding Dr. Google for the most part, and I’m staying open to learning. More to come.