We all need a little perspective sometimes.
Mine came on the heels of a week of diabetes conference activity and advocacy talk, and it was a reality check that slapped me upside the head while screaming at me about how much bigger the world is than diabetes.
One phone call was enough to remind me that, in the grand scheme, diabetes isn’t that big of a deal. Really. There are a whole lot of worse conditions and diagnoses that trump the “incurable but manageable” classification of diabetes any day of the week.
Especially those that carry the terminal disease tag.
I’ve been living with type 1 diabetes for most of my life, going on three decades. But I have no idea what kind of hell and devastation is involved in many other disease states such as Lou Gehrig’s, Alzheimer’s, Parkinson’s and more. No clue. Given that, I’m lucky to be living with an autoimmune condition that I can keep “under control” for the most part and not be stopped from living a successful, happy life.
On Sunday, I learned that my aunt received news that she may very well have Lou Gehrig’s, or amyotrophic lateral sclerosis (ALS). Basically, it’s a devastating disease that is incredibly swift and efficient at what it does: attack a person’s peripheral nerves, weaken muscles and eventually cut off the ability to move and breathe. And then death. All within a span of years that, generally speaking, you can count on one hand. Estimates are that about about 5,000 are diagnosed yearly, and 30,000 people have it at any given time. Do the math to determine how efficient a killer ALS truly is.
So, needless to say, this wasn’t the kind of news you want to hear. This is my dad’s sister, and we have a smallish family so we’re all close and that makes this even more difficult. Not to mention the fact that she lost her 15-year old son, my cousin, suddenly and without warning to a form of leukemia a decade ago. Now this.
The doctors are telling her there’s a 10% chance it’s something else. But if it turns out she’s in that 90%, then the reality isn’t pretty. Prognosis is generally anywhere between two and five years to live, though some can last longer. And ALS is a degenerative disease, eating away at your body and essentially making you a prisoner trapped inside an immobile body while you remain fully cognizant and aware of everything happening to you and around you.
Makes a few fingersticks and syringe stabs every day seem a small price to pay for a “normal” life where you can achieve dreams and accomplish anything, doesn’t it?!
I think so.
A friend was telling me recently about one of his close family members battling Alzheimer’s, and that caused these same feelings to bubble up inside me — even before getting my own family news. This friend’s family member has lived a life of brilliance, but now there are times when she drifts in and out of lucidity and can’t remember conversations that just happened or even details about where she lives. It’s heart-breaking, not only for her in realizing this is happening, but for family and friends who must endure the torture of watching someone so loved slip away.
To me, confronting these “other conditions” brings a level of perspective that so often we forget in this world. Suddenly, much of the online diabetes chat seemed trivial in my eyes. So insignificant: all the talk about summits and friendships, how educators do their jobs, blood meter marketing, tighter accuracy standards, fighting for affordable supplies, busting myths about what we can or can’t eat, and whether some newspaper wrote a good or bad story…
While important in the D-Community, this stuff seemed almost laughable to even be thinking about in light of this ALS news that is unquestionably so much “worse.” And believe me — I hate comparing or thinking of any condition as worse than another. No one asks for any of this and it all sucks. But there’s a reality check in there somewhere. Honestly, even worrying about hypo-caused deaths in the middle of the night — something I dread with all my heart — seems unimportant right now, because they are actually quite rare and in most cases, the victims were at least able live healthily and happily before that low hit. They didn’t have to endure the slow, torturous decomposition of their own bodies.
And here’s the thing: I feel guilty about feeling this way, as if I’m slapping my fellow PWDs and D-Parents in the face. But it’s what is going through my mind as I cope with this news. I feel guilty about ever complaining about diabetes or looking at it as some great burden. That guilt grips me when thinking back on all those people who’ve said to me, “Well, at least you have diabetes and not… (insert ‘something worse’ condition here).”
Now, I feel like I truly know what that line means. And it feels true.
Hell, I’m living with diabetes. Not dying or slowing rotting away as a result of ALS or some other devastating condition.
How dare I ever think I’ve got it bad, when there’s all this other stuff happening out in the world?
After the emotional phone call and some personal processing of this news, I broke down and sobbed my eyes out. Bitterness and anger set in. I prayed and read my Bible, finding myself not comforted but instead asking “Why?” before even more bitterness, anger and tears set in.
And then…. Curiosity.
I realized that for all the diabetes living and advocacy I embrace, there’s very little knowledge about Lou Gehrig’s floating around in my head. Really, aside from a general sense of what the disease is, the main fact that came to my mind was the 1930s baseball player whom the disease is named after. I remember the speech where Lou Gehrig described himself as the “Luckiest Man on the Face of the Earth.”
So of course, I turned to Google. To blogs. Community forums online. Any insight that friends on Twitter might have. I’m hunting for basically what I’ve found in the Diabetes Online Community (DOC)… Searching for not only knowledge, but stories of hope and inspiration… For me and my family.
There’s not a lot to be found.
Specifically, it’s tough to remain hopeful and tear-free when reading an incredible piece of journalism that ends with this line from an ALS patient: “While my mind n emotions r completely intact. Knowing full well the end result. And the road I’ll be forced to walk. Becoming a prisoner in my own body. Watching my world fly by. Remembering how life used to be. Missing so much of life.”
But, even in the darkness of all this heartache, there is some optimism and inspiration.
One of the best resources I’ve found is PatientsLikeMe, which was one of the first patient community sites and now going strong with 100,000 members that span 1,200 conditions. A Massachusetts-based family founded this site because one of their sons was diagnosed with ALS. It’s not only a community to connect people, but also a repository for patients to share their clinical data (similar to what the Helmsley Charitable Trust is now doing with the Type 1 D Exchange and Glu.org for diabetes). There’s a multiple of other ALS communities and forums I’m finding, too.
Sure, there’s no cure at this time. But research continues and treatments are being explored. And in this foreign world where I have little frame of reference, there’s a familiar air of advocacy that exists on issues so much bigger than myself, or my family.
The FDA is examining clinical trials and mulling whether to expand ALS studies to more places where research could continue. Stem cells provide a bright hope for answers, despite the fact that politics are slowing the discovery process down. People sharing their ALS stories online echo a similar message to many in the DOC — that they felt alone, hopeless, and wanted inspiration and a sense of community rather than just the gloom and doom mostly portrayed in the press and by doctors.
All of this has touched my advocate’s soul, transcending the diabetes universe to countless other lives.
That is what my energy will focus on now. Finding that inspiration for my aunt, and then tuning my advocacy on these issues to the broader chronic illness community.
Now, please understand: This isn’t a pity party. That’s not what I’m after in telling this story. I simply needed to share what I’m feeling and how many of the things I dubbed “important” in my own world seemed to lose luster after getting this news… Maybe it’s part of some bigger plan, whether I like it or not.
I’m “lucky” to be living with diabetes. Not only because “it could be so much worse,” but because it gives me some insight into the issues and conversations that can hopefully help a broader world of people suffering from all varieties of compromised health. I can only hope.