My mother was diagnosed with MS when I was five years old.\u00a0 She endured a long and devastating decline during a time when there were no treatments.\u00a0 Disease awareness was not on anyone\u2019s agenda, and I can\u2019t recall more than a few instances when I told someone my mother had MS.\u00a0 \u201cShe\u2019s sick,\u201d I would say.\u00a0 Using the name of disease was pointless, and would bring one of three responses: a look of horror, a look of pity, or a look of \u201cI have no idea what that is.\u201d<\/p>\n
\u00a0It was only when I was 17, shortly after my mother died, that I began to think about others living with MS.\u00a0 I wanted to know them.\u00a0 I didn\u2019t know if the need arose because I was reaching adulthood and starting to see the world in a different way, or if I simply missed my mother and wanted to be with others who were like her.\u00a0 Or maybe I just wanted comfort from people who understood what MS was all about.\u00a0 I contacted the local MS Society and was invited to participate in a \u201cfamily day\u201d event where parents with MS would bring their children to a special day of fun-filled activities and connecting with others in the same boat.<\/p>\n
\u00a0I arrived early to the family day and helped decorate the room with balloons.\u00a0 I felt good and excited, but as the room began to fill, I grew nervous.\u00a0 Parents, some with walkers, some in wheelchairs, and some with tremors, struggled to make their way in.\u00a0 They all reminded me of my mother at different stages of her decline.<\/p>\n
\u00a0The children arrived energetic and eager to start the program.\u00a0 The group leader, the children, and I sat on the floor in a circle.\u00a0 The parents sat behind us.\u00a0 My job was to \u201cconnect\u201d to the children, talk to them about living with a parent who has MS.\u00a0 I was supposed to be inspiring and understanding.\u00a0 I was supposed to give them hope.\u00a0 Instead, I froze.\u00a0 I hadn\u2019t realized until that moment when the circle of children were all before me, that I had nothing positive to say.\u00a0 It wasn\u2019t all going to be okay.\u00a0 When I had to introduce myself, and explain my connection to MS, all I could think about was the truth: My mother was dead and MS had killed her, slowly and cruelly. \u00a0<\/p>\n
I could not say this to the circle of children around me, and though I distinctly recall my panic in that moment, I don\u2019t remember what I said.\u00a0 I know I said something<\/em>, but whatever it was, I\u2019ve blocked it out.\u00a0 Somehow I completed my job for the day – to play with the kids.\u00a0 I got out of there as fast as I could and never went back.<\/p>\n Today, there are treatments for people with MS.\u00a0 There is hope.\u00a0 And for people living with MS, and practically every other illness, there are support groups both online and off.\u00a0 There is MS advocacy, too, but to be honest, I don\u2019t know very much about it.\u00a0 Until I looked it up right now, I had no idea that March is MS Awareness and Education Month.\u00a0 And if I didn\u2019t run an online diabetes magazine I\u2019m not sure I\u2019d know that November is Diabetes Awareness Month. \u00a0<\/p>\n I\u2019m certainly not against Diabetes Awareness Month, but it doesn\u2019t particularly move me. We who live with diabetes are always preoccupied with our blood sugar levels and food intake. Being aware is part of survival.\u00a0 My gut tells me, however, that because diabetes lacks the obvious urgency of cancer and many other diseases and conditions, no matter how omnipresent it is, diabetes won\u2019t garner anyone\u2019s deepest attention. I often hear the diabetes\/breast cancer comparisons.\u00a0 (Why can\u2019t we be more like breast cancer? Breast cancer has a more recognized symbol, raises more money, gets sympathy while we get called fat and lazy.) Rather than suffer awareness-envy and compare one disease to another, though, I prefer to think about the common thread that runs through so many of us with an illness or disability \u2013 vulnerability. \u00a0<\/p>\n For those of us with insulin-dependent diabetes, no matter how strong we are, no matter how fast, or how smart, without insulin we are dead.\u00a0 This vulnerability unnerves me. \u00a0 \u00a0<\/p>\n I don\u2019t feel better or worse about having diabetes because, collectively, we\u2019re making a lot of noise this month, and I don\u2019t know if we\u2019re getting through to anyone who doesn\u2019t already know.\u00a0 But the more I think about it, the more I begin to understand what these awareness months are really about.\u00a0 The parties, walks, trying to educate others about us, or the lighting up of monuments in blue \u2013 those things are all misleading.\u00a0 These disease months aren\u2019t really even about asking for improved care and better treatments.\u00a0 Diabetes Awareness Month and the other months like it are actually all calling for the very same thing: compassion. \u00a0<\/p>\n Life with diabetes isn\u2019t easy.\u00a0 Sometimes, we just need the world to acknowledge this fact.\u00a0 In hindsight, I can say that when I went to MS family day all those years ago, I went there to acknowledge the difficulties of those families, and despite my fear and awkwardness, I hope that got through to someone.\u00a0<\/p>\n I can accept that improvements in care come in increments and that cure is still a long ways away, but compassion isn\u2019t something we should have to ask and wait for.\u00a0 With a little more of it going around, \u201cawareness\u201d wouldn\u2019t need to be a thing we designate 30 days for.\u00a0 It would be there always, for everyone.\u00a0 The way to get there, perhaps, is to put our own discomforts aside sometimes and pay attention to others.\u00a0 In this way we learn about each other and gain collective strength.\u00a0 In this way we could all become better.<\/p>\n \u00a0 \u00a0 \u00a0<\/p>\n","protected":false},"excerpt":{"rendered":" …<\/p>\n","protected":false},"author":8,"featured_media":53098,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","footnotes":""},"categories":[1501],"tags":[289,378],"yoast_head":"\n