Our Diabetes/365 Community IS our cuppa!
How’s your governor doing? This is a different type of politics. It is the censor that exists within each one of us fondly referred to in our home as the pause button. Are there days where you just plain wish you could release that pause button & get some raw truths out there? Do you remember the movie with Jack Nicholson in it where he assertively uses the statement that at times permeates society of, “you can’t handle the truth!” Are we at times using kid gloves or putting on the water off a duck’s back face? When it comes to diabetes advocating I find that I am pretty steadfast but certainly there is an infusion of rest breaks. Honestly, sometimes a rest break from advocating for me might be me rolling my eyes at the less than delightful warped things that a small but mighty minority of people say to me. We don’t need to go over the whole list for the zillioneth time but let’s cover off a few just for example. I have literally lost count of the number of times that I have heard people say these top 3 things to me over the past almost 8 years:
- Oh you have the bad kind of diabetes.
- You don’t look like you have type 1 diabetes/look sick
- You cannot eat sugar anymore
99% of the time I correct these and the other 10-12 most popular myths or misconceptions or just plain wrong statements said directly to me about diabetes. The other 1% of the time I am at least in my head shaking my head & rolling my eyes because I am human & let’s face it, it gets old hearing these nonsensical statements over & over again. For sure honourable mention for the statement most likely to get the eyeball roll from me is that type 1 diabetes can be cured by cinnamon, okra or some other crazy assed substance. There is no cure obviously currently. There are treatments & gadgets which keep us alive (form of life support) while we wait & wait for the cure. Do you ever feel like replying the odd time with “listen you crazy bugar, don’t you think that if cinnamon or okra or some other hair brained substance cured type 1 diabetes that all of us living with type 1 would use it?” The other thing is that as a community of people living with diabetes we tend to be very up to date with what is in the works as far as diabetes management goes. It is not like we would have missed out on information on some strange brew that would cure this. By nature I am not a sarcastic person & frankly it is not something that I enjoy however sometimes it takes more patience than I have in reserve to bite my tongue & hold back what I am really thinking when someone without diabetes claims to have all the answers…a sudden undisputed expert as it were. There are some days where fighting for our lives takes so much energy that fighting nonsense quickly becomes secondary I find.
Are you fond of or familiar with the Harry Potter series? Being the mom to 3 boys I have been introduced to the series & can understand the creative attraction that it has for kids & perhaps many adults too. J.K. Rowling is a creative genius in my opinion. For sure almost everything that I read is non-fiction yet I will enthusiastically admit that I am richer for having been toe dipped into the fantastical world of Harry Potter over the past few years. Both of our younger 2 sons have dress up Harry Potter capes & glasses & when they dawn them they seem to morph into the character complete with the reference to my husband & I of “muggles.” Lightly & only with love do I reference the folks who do not live with diabetes as “diabetes muggles.” And hey, I was one of those types of muggles less than a decade ago so I do not mean anything derogatory whatsoever by this term.
How do we feel about some of our interactions with diabetes muggles? My answer would be, “it depends.” At least 90% of the people in my life are incredibly supportive, encouraging, respectful & down right awesome in their actions & words surrounding diabetes. What is it about actions & words that have that way of staying with us long after they are over? It is a blessing & a curse I think. It is a blessing when someone has been kind & we can be grateful & remember this. It is a curse when someone is brutally unkind or downright mean. A friend of mine has a super healthy outlook on life & his motto is “do something nice & forget about it & receive a kindness & remember it.” To extrapolate from this motto, I try to remember kindnesses & get over nastiness. It is a work in progress because hey let’s face it…it hurts to receive nasty words or actions & it feels pretty great to receive kind words & actions.
Perhaps there is a part of me that tries to shield loved ones especially from the realities of life with 365’s. Then when it comes to interactions with acquaintances the automatic response that feels a lot like Pavlov’s dog is “I am fine.” I am fine supposedly if I just came out of a low blood sugar 5 minutes ago or am in a several hour long high blood sugar battling not to get ketones. It is cool at least to be able to look super healthy (whatever that truly looks like) while being sicker than a dog I guess. There are things that we likely wish that our loved ones & others could somehow get or understand but we dare not speak of these things. Why? Some of my reasons for not firing my governor include: I don’t want to sound like a whiner, victim, drama queen or weak. Without tooting my own horn I will say that I am a capable manager of diabetes. I am perceived frankly as better at it though than I in reality am at times. Or maybe it is my insulin pump that is the one that is perceived as an infallible genius. Either way the rose coloured muggle glasses are on. There are times when my blood sugar is ridiculously high & my nuclear family is unaware of this. I hate it when diabetes physiologically speaking has the ability to try to turn me emotionally (temporarily) into someone that I am not like when blood sugars go sky high. That is something that I would tell the muggles if I let my guard & governor down. And if I let my armour down long enough I would also share with the muggles that there are times when diabetes scares the absolute hell out of me especially during sleep time. Lows in the night can if I let it open up the flood gates of panic. I would if I let the governor down tell muggles that there are some nights where the panic gets the better of me because there are real instances of scary things happening to battle buddies (non muggles) & I collapse only in exhaustion to a couple hours of sleep for nights on end. Most of all I would & actually do tell muggles even through puzzled, perplexed, glazed over looks that none of us has all the time in the world to say & do the things that matter with love towards others. My intensity is ok with me because it means that everyone in my life knows that I love them. There have been no unspoken words of gratitude or love or appreciation because I just plain think it is nonsensical to not realize that one day the time just won’t be there to say those words. I felt that way before being diagnosed with type 1 but I know I feel this in a more magnified way. I also think that I did not always tell others (prior to being diagnosed with type 1 diabetes) how important & loved they are because somewhere along the way we have been taught as a society to not get too sentimental or mushy or be a softie. Tough beans on that one society…I like, like, like being sentimental, mushy & a softie. I am always flabbergasted at the actuarial tables kind of thinking that many muggles have. Many folks seem to believe that people leave this world in the order that they appeared. Sadly I have lost too many dear ones at young ages to buy into that myth. I have lost most of my patience regarding muggles thinking that there is all the time in the world to say & do the loving things. Recently I went ahead & let my governor down when a loved one was waiting, waiting, waiting for the perfect time to do an act of care for someone dear to them. Now is the time my brain screamed out. I wish that I could say that in a calm, collected way I encouraged my loved one to do the act of kindness right away but instead the words came out with the emotions in a raw, barnacles & all kind of way. I did get the point across though that we just plain don’t have all the time in the world & least of all is there time for regrets over missed acts & words of love & it lit an invisible torch under the person. It turned out that had they not gone to see the person right away that it would have been a long time before the next opportunity will come again if ever. It is not an “I told you so” moment but rather “I trust my gut” & I will not silence my trusty gut. When I have silenced it I have been sorry. It is as simple as I just plain trust my gut period. I don’t want diabetes muggles to walk a mile in my shoes because I do not wish this beast on anyone. They say though that to understand others that we need to walk a mile in their shoes. There are days when I don’t want to walk a mile so to speak in my own shoes but denial is not an option. I ceased to be a diabetes muggle on November 29, 2007. The words that really matter are the ones that I do choose to speak. I have fellow diabetes non muggles to talk about the terrifying stuff with. They do walk a mile already in my shoes. For all of us (non muggles) walking in the same shoes I just plain want a cure so that we can all go back to being diabetes muggles too. For the diabetes muggles in my life I would not want them to live one second with diabetes it goes without saying. I simply say thank you for the hugs & trying to understand & just loving me on the good & bad days. Even though there are times when I so desperately wish that I could find a way to articulate the way the beast of diabetes scares me & beats up my body & tries to turn my emotions upside down there is a gap. The gap is that there is no way to walk a mile in someone else’s shoes. The great news is that as long as there is love & compassion that is enough. And to the beautiful group of non diabetes muggles walking that mile in the same shoes we can say it all & help keep one another strong one more day & one more day…
My heart’s hope for you is that you plug yourself into the DOC and or any other diabetes non muggle group for support. Sometimes we just need to say it without a governor…to just say, “I am scared.” Then the response, “I understand, me too.” Then…”I am cheering for you…me too.”
Whether you are a diabetes muggle or not, you are dear to me & as I said already I like, like, like being a sentimental softie so you mean the world to me. Will you grow tired of hearing that? I hope not. Be gentle with yourself & know while drinking oceans of tea I am smiling & cheering you on. Next Monday’s story is in the creative ether xo