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 tha
t 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.
You ARE slapping PWD and their families in the face with this. This is the disease equivalent of “You need to finish your dinner, because there are starving children in Africa.”
Yes, there are starving children in Africa. Me eating my peas will not help them. Yes, there are plenty of people with horrible, uncontrollable, incurable diseases. Does that mean you get to downplay how hard diabetes is? No.
Shame on you.
Funny, I just commented on Allison’s article about aging with diabetes in which i point out that ive lived long enough with diabetes to get a diagnosis of ALS and then I’m reading your article. What a coincidence! Let me tell you, Diabetes, as hard as it, is a walk in the park compared to ALS. Savannah – I think Mike’s article was a true and good one. No one is diminishing the hardships of diabetes, but if you had my perspective you’d be on your knees thanking your lucky stars! I am not feeling sooty for myself and don’t need pity but I do want to appauld Mike’s perspective which i find fantastic!
Mike – I am so so sorry about your Aunt. It is a real tragedy, but that tragedy has its gifts and you just got one. If we can find the blessings which are in disguise we will all be happier. Thank you!
Mike,
Hugs for your aunt and your family in dealing with this diagnosis. Just like a diagnosis of diabetes I know you will do your best to help your aunt understand her condition to the fullest, how to eventually accept the diagnosis and try to fight hard for her life and well being.
We are here for you if you need help researching, exploring, anything you need from us.
Katrina
Savannah, in no way does Mike diminish the reality and the difficulties that you and I and fellow PWDs have to contend with every day. After all that is what Diabetes Mine is all about!! However he does present another perspective from which to view the misfortune of having diabetes.
Think about it, we are here today because Lilly discovered and began manufacturing insulin nearly a century ago. We have great doctors and educators, not to mention incredible technological advances and medicines. It is very sad that there are individual with diseases that cannot be treated. Can we not spare a little compassion for them too?
Hi Mike,
I am so sorry about your aunt’s diagnosis. I will pray that she is not in the 90%.
I’m incredibly moved by your post, and by the courage you have to say all of this. I feel much like you, but am hesitant to express it for fear of reactions like Savannah’s above. Mike and I regularly feel “lucky” that we’re living with diabetes. I know that it is much more difficult to manage in children, and I am wholeheartedly sympathetic to that. But having a condition like diabetes – compared to other conditions I’ve seen up close – feels like a blessing.
Stay strong.
Understanding and acknowledging how lucky we are to have a condition that is mostly manageable does not diminish how frustrating and time consuming and difficult that living with diabetes can be. We’re dealing with Alzheimer’s and cancer in our family. I really don’t think it’s a slap in the face to admit that I would much rather be coping with the relatively minor problems I have with the diabetes. It doesn’t mean that diabetes isn’t serious, isn’t hard to live with – it just means I know that I’m luckier than some others and I can be grateful for the tools that allow me to manage it.
Thanks for writing this Mike! I have these feelings quite often, working in diabetes, living with epilepsy, and partnering with other health agencies. Perspective, support, prayer and a deeper understanding of disease and how to find empowerment benefit us all.
All my love to you and your family!
Lawren
Mike, I just started following Diabetes Mine about 2 weeks ago. I love your perspective on managing diabetes. I am a pharma representative and promote diabetes medications. I switched to my current position because I was diagnosed with T2 about 5 years ago. Like all of us, I didn’t really make any great effort to manage my diabetes, choosing instead to wait until the day it finally controlled me. I knew that I had the wrong attitude and took a diabetes sales position because I knew that if I talked about it all day long – with doctors, staff, and CDEs, not only would I learn more but I would do a better job myself. I am amazed at the big gaps in communication, the very “clinical” instead of personal approach that is given to patients at every level. I have been incorporating many of the insights from your posts and others into my conversations with my customers. I am convinced that we are over complicating how diabetes is addressed which leads to a sense of overload. Often patients are given resources to read with no explanation or worse, I’ve actually been told by one physican that I usually refer them to the internet. Wow! Probably only about 50% of the PWD that I know even own a computer. I am learning so much from people like you on how to initiate patient driven conversations. Thanks! I’ve become a big fan!
I’m proud of Mike for being brave enough to bare his feelings here. Much love to him and his family getting through this rough time!
To @Savannah: no one is belittling diabetes — all Mike is saying is that a diagnosis with another illness that means sure, painful death soon makes his own plight seem less traumatic. Shame on YOU for being so intolerant of another PWD’s gentle honesty.
My thoughts are with you and your family, Mike.
Fantasticly honest post, Mike!
I’m also moved by the stories of people with other chronic conditions, whether they be terminal or not. And sometimes those stories have made me feel like D just isn’t that bad.
I’ve also found that I want to advocate for all patients, not just diabetic patients.
And @Savannah there is a huge community of patient advocates out there from communities of every condition imaginable. We all have much more in common than you realize and this larger community needs the voices from our diabetes community as well.
We are working to make healthcare better for all of us, not just diabetics, but for everyone by applying the combined passions of advocates from every condition.
You may have never thought of it that way before, but please do now as we are working for you and your loved ones as well.
I remember a discussion with a friend about her recent breakup with a boyfriend. Her heartache was palpable, but she said she felt her pain was nothing compared to mine (I was going through a divorce). I told her “Pain is pain”. We should never belittle someone else’s battles, and whatever we are going through (or others) there is always something good going on in life (no matter how “small”) and something that could be worse in life. That is how I see this situation. It always helps to keep the right perspective, no matter what.
I hope Mike’s aunt will not have to suffer with ALS. As an adult (recently diagnosed) with T1, I understand where Savannah is coming from. We are all at different stages in our life with diabetes. We have good days, we have bad days, we have ugly days. And sometimes it lasts for months or years! Perhaps what Mike is trying to say is that his his diabetes management is going relatively well compared to what it could be. And that perspective will (hopefully) encourage him to appreciate what he has in life and aid him in even better management of his disease.
“Perhaps what Mike is trying to say is that his his diabetes management is going relatively well compared to what it could be.”
Indeed. Mike’s T1 cannot compare to another’s T1. For me, an extreme monthly hormone fluxuation makes two weeks out of each month almost completely unmanageable. Don’t speak for us, Mike, we can do that for ourselves.
Thanks for the comments, Suzanne. I appreciate them. To be clear: I’m not speaking for anyone here except myself. As you’ve read above, this is about my feelings in looking at my own world of diabetes in light of this recent news. Each person is welcome to agree or disagree, or care or not. And to me, it has nothing to do with how my management is going. I could be doing great or horribly (in my own opinion) and that doesn’t change that I am dealing with the emotions expressed above. Again, others likely disagree; and that’s totally fine. No one here is forcing anyone to believe anything. Thanks again, for chiming in.
Mike wasn’t speaking for anyone but himself. He said his piece, you said your piece. Call it a day and move on!
You all know having a 4 yr old dx with D ain’t easy. But I remember thinking that aweful as it was at least she has this and not say cancer–as if each person gets one aweful thing and this is ours so what are the odds of her getting like luekemia if she has D. A friends said sarcastically, Yeah like God would never do that! She meant that just b/c you have D doesn’t mean you won’t get something worse too, so don’t be too happy it’s just D b/c you don’t know what’s coming down the pike. Years later she has, after numerous test and hospital stays, what might be a brain tumor or an area of demyleonization–not sure yet. Of all the things we are dealing with, D isn’t even in the top three of desease I’d like to cure.
Savannah… believe me, I know how hard diabetes is. It sucks, and I can’t overstate that. But it takes guts to tell your story, whatever it is; to put it out there on display for everyone to see. If we can’t be positive about that, what’s the point? Even if you don’t agree with the slant of this piece, calling someone out in a public forum like that is… distressing.
If you really feel this way about Mike’s post, maybe an e-mail would have been more appropriate in this case… just saying.
Mike, thanks for helping me to remember that I don’t live in a D-bubble.
First I want to send all my hugs, prayers and healing thoughts to your aunt and your family.
I think is is agreat post.
Not because it is belittling diabetes but because to have compassion and understanding for another disease not only makes us better people but makes the world tha much better to live in.
When Justice was in DKA, in iCU and finally started coming around and was now talking and drawing my mother and I took a walk down the hall so that I could …cry.
Dad sat with Justice.
I felt like our lives were overl I was angry and scared and rightly so.
In the room we passed was a girl about 9 or 10, on a ventilator, she had lost all her hair, eyebrows everything. She not awake. But you can see she was fighting…to live.
My mother and I looked at that little girl, and she said be thankful while you are scared, that you know he will be here tomorrow.
And as much as I loathe diabetes…I remember that little girl….
Thank you for sharing Mike, sorry my long long comment.
Love ya!
I’ve lived for 54 for years with diabetes and raised a child, who is now an adult, with T1. I think the key word in that sentence is LIVED. It wasn’t easy, but we lived and it was just something in our lives, not the be all and end all of them. It doesn’t seem like anything could be worse than being given a definite end to your life and knowing that you will suffer terribly until then, becoming totally paralyzed and unable to speak but knowing everything that’s going on.
I’m so terribly sorry to hear about your Aunt’s health scare. I will be praying for you all. This was a very well written article Mike. Thank you for your honesty and sheer bravery for sharing your feelings with us.
I think it’s important to respect that there are diseases that a person experiences and lives with and there are those around us that have diseases and you are witness to it. And to a certain extent, suffer the emotional toll it can take from caring for the afflicted person.
Some diseases kill quickly, while others may take decades. Some are manageable, and some are terminal. But for each one of us, we (afflicted individuals) are the ones that live with it and only we know how it’s affecting us and what it’s doing to us. To play the what if I had this disease versus this disease is unfair. We have the disease we have and its all we know. It’s our reality. So, if we think we are being wrong or selfish in complaining about a manageable disease that’s our prerogative.
Type 1 diabetes has been my reality for 30 years and will not be thankful for having Type 1 versus some other illness, even a terminal one.
Comparing diseases is unfair. T1 drags on forever, and sometimes I believe a swift end would be better. Besides, diabetes is never understood like cancer/aids/etc. so the empathy isn’t there. Death comes to all, perhaps a quicker “reset” is better than a long, drawn out end. There’s a comparison for you.
Wow I’m really suprised at some people’s reaction to this article! Mike I’m very sorry to hear about your Aunt- that is a very scary thing and I applaud you for your courage to share your emotions right now.
I too have had very similar thoughts. Not to say that diabetes doesn’t really really suck. But when I think about kids with CF or people with ALS or other terminal diseases, I thank my lucky stars that my disease can be managed to a certain extent, even though managing it can be really hard sometimes.
Thanks for this, Mike. I’m thinking of you and your family. I agree with you that it’s good to get perspective. I don’t think it’s dismissive of the challenges of Type 1 or the DOC to say that you’d rather have Type 1 than ALS. Diabetes is hard and frightening and frustrating and, well, horrible. And I am the last person to ever suggest that insulin is anything close to an ideal treatment. But the thing is, before insulin, Type 1 diabetes was terminal. Now it’s not. And I distinctly remember feeling a huge rush of relief, when I was diagnosed at 22, when I found out that it wasn’t going to kill me. I wouldn’t wish Type 1 on anyone, and people often don’t realize how difficult it is to live with, but I also think it’s important for me to remember my feeling of gratitude that, for all its challenges, at least Type 1 would not take my life.
Mike, thanks for a thoughtful and thought-provoking post. It definitely provides perspective. A month from now I’ll have had type 1 diabetes for 40 years. I understand how challenging it is day by day and hour by hour, but many of the folks that I know with diabetes have been shaped and formed by this disease — and not at all in a bad way.
I’d give everything for a cure, but I’m very thankful not to have ALS, Parkinson’s or a variety of far worse conditions.
@Savannah
You are correct; eating your peas will not help the starving children in Africa or anywhere for that matter. But being told about the starving children is supposed to help you become more of a compassionate person and realize that there are bigger events going on in the world rather than yourself.
I’m sorry you feel that this post was a slap in the face – living with Diabetes in any capacity isn’t easy. That wasn’t its intent. But then again, neither is living with MS, ALS, Crones, Lupus, Parkinsons… ect. The point is that it isn’t easy to watch anyone you love go through pain – whatever that may be… Again, remember the bigger picture of the world other than yourself.
I hope after some reflection you are able to see that.
@Suzanne – So you’re saying you’d rather have a terminal disease that gives you just a few months or years to live a painful existence?
Sorry, can’t wrap my head around that…
It’s a tricky thing to write about, and I’ve been beat up before when I compared diabetes to cancer. Do I wish cancer on anyone? Of course not. Do I wish diabetes on anyone? No way. But if I was given the opportunity to swap out illnesses, I would have to think long and hard.
Something with an end date is very alluring to me. The relentlessness of the big D and knowing that I will probably always have to deal with glucose testing, a1c tests and carb counting is something that I struggle to wrap my head around.
I love that Mike felt comfortable enough to share this with us. And I appreciate the perspective.
Lots of links to info about ALS on the”learn” tab from Steve Gleason’s website:http://www.teamgleason.org/ as well as his continuing story to live life with ALS and give back.
Look it suck to have D. We all know that. But I can tell you right now that if a genie gave me three wishes, none of them would be to cure D! As much as I love my dd, her d does not impact her life as much as my son’s aspergers does. In fact, her D does not even have the same impact as her peanut allergy. And her little brain tumor the size of a meatball is something I’d rather not ever think about. There are worse things than D and they don’t even have to be terminal. It’s all in the way whatever you are dealing with affects your life. Some D folk are climbing mountains, others are hobbling around on one foot.
I was actually glad–Gof help us–that is was my daughter that got D and not my son who already has aspergers, athsma and peanut allergy! I hate D, but yes there are worse things and there are even little things that have a big impact on some ppl.
Thank you Mike, for a very good perspective on our situation. I was dx when I was 10, and that was 69 years ago, in 1942. I’ve done a lot of recreational bicycle riding over the last 34 years, and continue to participate in that activity. One of my friends in the bicycle club was dx with ALS about one year ago, and he has had to give up riding, and uses a walker to get around in his own home. That’s what one year has already done to him. I am so thankful that I am still able to ride my bike (21 miles this morning). I know that today’s parents of T1 children have a much tougher job than my parents did, 65 years ago, because of all of the improvements (??) in technology, but they can, and most likely will, be successful, and have something of which they can be very proud.
It’s funny how we tend to think in terms of black or white, this or that, is my pain bigger or smaller than yours, is diabetes better or worse than a debilitating, terminal illness? Truth is that kind of thinking separates us.
There are times life cruelly reminds me many people have it far worse than I do. There are times I appreciate diabetes for giving me the motivation to work hard at my health. There are times I weep for others’ pain, and times I want everyone to notice mine.
Point is human nature is me-focused and here and there life tilts our me-boat. Most of the time we’re just going along dealing with whatever we’ve been given. Maybe the lesson is, as often as we can, to walk in someone else’s shoes and see the world through their eyes. That’s when we step outside our own drama and truly give to others in a way that’s healing. That’s what I hear you doing for your Aunt. Beautiful post Mike.
Mike,
Thank you for sharing. I had an aunt diagnosed with the same as your aunt. With all the symapthy she got I thought well she didn’t have to deal with it everyday of her life. But you have given me a new perspective.
I’m so sorry about your Aunt Mike. I hope you know that more than anyone right now…I get it. After Ryan was diagnosed with his cancer I had a hard time listening to people complain about the little things…acting as if it was the end of the world that their child was high for a two hour stretch. But I have to say, it is the “trivial” DOC chatter you speak of that has literally saved my life the past few months. These friendships aren’t insignificant, in fact I’ll be the first one to bet that the DOC relationships you have forged will be one of your biggest saving graces through all of this. We all have our place in this world. If you are an advocate trying to make the world a better place for the millions of people that live with diabetes…there is nothing more admirable than that. All my best to your family! (And some advice: Don’t listen to the statistics or percentages…you never know where your loved one is going to fall. Hugs!)
Mike,
First let me say that I’m sorry that your aunt and your family have to go through this. To find the silver lining, though, I’ll add that your aunt is fortunate to have this family surrounding and supporting her, and that she’s not going at it alone.
Comparing diabetes to ALS (or to any other terminal disease) is a tricky situation. With diabetes, one has to self-manage and self-medicate… there’s a lot of effort that gets put toward keeping oneself physically and mentally healthy. With many other diseases, the physical health is what it is: take what the doctor prescribes you and hope for the best, but the biggest struggles are with the acceptance and the mental health of the disease. That’s just my opinion in 10 seconds, I could be wrong.
Now, on to ALS. I mentioned to you once before that my father’s childhood friend had ALS. I know he wrote a memoir (which, if my memory is correct, eventually served as his eulogy) and I tried searching online for it but couldn’t find it. What I did find was an article about him in reference to an ALS walk (yes, they have those too). You wrote about counting the years on one hand, well Norm lived with ALS for 17 – that’s right – seventeen years! Physically, he was deteriorating, but mentally he could, and did, do anything. He coached his daughter’s high-school basketball team, and not in just an “honorary” role. He would observe games and strategies, study videotape, develop plays, and tap out plans on a keyboard using a mouth-stick. He didn’t want ALS stop him from being there for his child, and it didn’t. I really wish I could find some of the things he wrote, because I’m sure they’re really inspiring. Eventually, ALS won the battle, but his family is still very active in fundraising for the cause. My aunt and grandmother are still rather close to his wife, and I might be able to get more information for you if you’d like.
Of course, to be like this guy takes a LOT of motivation and inspiration (and luck), and not everyone has that. Personally, I know that diabetes could easily wear me down, and something like ALS would probably do it many times faster. And to the point of your whole post, if I had to choose between diabetes and ALS – yeah, I’d choose the ‘betes in an instant. But we all must play the hands we’re dealt, and I hope your aunt, and her supporting cast of family members, are strong enough to play it with confidence and perseverance.
I understand what you’re saying. I hate to “compare” diseases or traumatic experiences, but looking around provides prospective. When my daughter was diagnosed T1 in Nov 2010, we were sitting in the same pediatric ICU where my son had died 16 years earlier, after a 4-month fight to live following heart surgery. He couldn’t fight off infections due to diGeorge Syndrome, which left him without an immune system. Even though I was panicked to be back in that ICU in that hospital, I knew I was walking out of there with my daughter and we would learn how to live with diabetes, so the scenario was different.
I’ve also learned since my daughter’s diagnosis that different autoimmune disorders often run in a family. My husband’s sister (my daughter’s aunt) has MS. I’ve heard these 2 diseases often show up in the same family. We’ve watched my sister-in-law steadily deteriorate. It’s very scary and makes you feel helpless to watch. We don’t get to choose what we have to deal with, but if I had to, I’d pick diabetes. I see so many advancements in this field and I’m very hopeful. I see a lot of “woe is me” posts about diabetes and a lot of “poked my finger 8679 times.” We’re lucky that there is a way we can manage diabetes, even if it isn’t easy.
Hugs and prayers to you, your aunt, and family. Beautiful post about perspective. Thank you for sharing with us and for the conversation that is generated.
I used to think like Savannah…until I realized there are much worse things…I’ve helped parents say good bye to babies that don’t live, to children with cancer…etc etc etc…and then my best friend from medical school was diagnosed with ALS. At 35. With 2 beautiful small children. A fabulous husband. A career prospective to kill for. And it all came crashing down. To realize that one may be faced with “will this treatment work or won’t it” does make T1 diabetes so much easier to swallow. After Sarah found her freedom from ALS on july 4th of this year, I realized again just how lucky I am that “I only have diabetes”.
There is a family run foundation out of Massachusetts called the Blazeman Foundation. They solely fundraise and reserach ALS after their son Jon was diagnosed. They have a team that competes at various triathlons and events. I am a member of this team. So for my race next week, Mike, I will run for your Aunt, in her honor, and roll across the finish line in true Blazeman style for her and for Sarah, Mike and Jon. Best wishes and praying for a diagnosis of something other than ALS.
Mike –
Sending you, your Aunt and your entire family lots of positive thoughts, prayers, hope & positive vibes!
Mike, I will keep your aunt in my prayers and I hope that she is in that 10% that she doesn’t have it. I totally understand how you feel. I have watched 4 family members and 1 very close friend die from cancer – I will take diabetes any day. As you know, I have neuropathy and gastroparesis so I know how much this disease sucks. I have lived with it for 28 years and 8 months. I have had my share of bad lows and EMTs (and just had a visit with them last week) so I know all the bad stuff and what a pain this disease is. But I also know that chances are pretty good that I will wake up tomorrow morning – my friend and family members knew that their waking up in the morning was very limited. And when I get up, I can go outside with my dog and do things that I enjoy doing.
I think the fact that you care about other people around you and realize that there are worse things than what you are going thru is what makes you a great advocate. Scott is right, we are working to make healthcare better for all of us. You make a great voice no matter who you decide to speak up for.
Being thankful that my sons diagnosis isn’t a terminal disease is one of the few things that keeps me going with him. Yes it makes me sad, and mad that he has to live with diabetes, but I am so thankful it wasn’t worse. I totally get your point of view here, and sincerely agree. Good luck to your aunt. Xoxo
I think somehow I missed part of this post or maybe just was so flustered I moved past it.
I do think the DOC and all our talk on every subject David my life.
My D friends have been there for me not just when Diabetes is bringing me down but when other parts of my life are.
Support through it all.
Just need to say that, as the DOC has truly saved so many of us.
This is a topic so close to my heart, Mike. I have this feeling every single day. You see the non-profit I work for covers 43 neuromuscular diseases, including ALS. I see first hand the things you described that make you glad you are LIVING with diabetes. I will say I get those same moments from reading other’s story in the DOC.
Your aunt & your family are in my prayers. I’m not going to lie, this will be a rough road.. A road that can make you thankful to be alive in one breath & them make you curse the universe in the next.
The information you’re looking for is out there. DM me on Twitter or email me & I’ll help you find it if you’d like.
And just so you know, I don’t feel slapped in the face at all. I feel proud to know someone with such a compassionate & empathetic heart. ♥♥♥
So sorry about your aunt, Mike. My thoughts are with your family. This was a beautiful post and I appreciate your perspective.
I had a friend die of cancer and his words to me just before he was diagnosed were “At least you don’t have something that has no treatment, no hope of allowing you more time.” 2 years later he was diagnosed with cancer and lived only a few months more. So now his words haunt me because even though diabetes does absolutely suck, I’m the one living life and enjoying it’s ups and downs and he’s not here at all.
I understand what you mean. I have a 9 year old with type 1. I am an attorney and I am often in the adult guardianship courtrooms, watching parents petition the court for guardianship of their disabled adult childen for various reasons…traumatic brain injury, severe autism…etc. It forces me to step outside my bubble and consider the challenges others face.
Mike,
Thank you for sharing your family’s story. A little perspective never hurt anyone, and often it has helped. I once worked with a man who had BOTH type 2 diabetes (on an insulin pump) and ALS. And it was, indeed, heartbreaking. I commend him and his wife for their courage and strength. None of this is easy, but people who take it on really us show us what life is all about.
Praying for your aunt that she is not diagnosed with ALS. There are many diseases far worse than Type 1, and ALS is most definitely one of them. No comparison. No where in your post did you suggest that we stop fighting for a cure and I’m sure you are expressing your gratitude that, to date, you have been able to lead a fairly normal life. In the face of your aunt’s possible prognosis, the death of your young cousin, this is the normal reaction. Not everyone is lucky to survive and live a normal life with Type 1 and we must remember those casualties, recognize the seriousness of this disease. Life is normal until it’s not. I have every expectation that our DD will live a healthy life, but there is a cloud of uncertainty looming. I can;t be positive she will remain healthy. We must live every day to the fullest, because you never know what will happen in life, with diabetes or otherwise. And not give up hope for a cure. In many Third World countries Type 1 is a death sentence, even today. Fight on. And I will pray hard for your aunt, who lost a son already. Life is not fair.
I will be keeping you and your family in my thoughts…a heartbreaking situation.
I think we all have our own coping mechanisms and personal perspectives on this. Our son was diagnosed in January and once we made the mental adjustment, we accepted that this is our new normal. When we really stop and consider D vs other life threatening, debilitating illnesses, then in MY mind, D…doesn’t seem so bad.
Last week, my husbands best friend called us. His son had just lost his 5 year fight with Osteosarcoma. He was holding his hand and waiting for the coronor to come and make an official declaration. So they talked and we waited on the phone with them. I am hurting for their loss and at the same time, I was never so grateful to go prick my sweet sons finger and tuck it back under the blankets as I went to bed. I held his warm hand a little bit longer and was overwhelmed with love and gratitude that I could do such a simple thing to help with my sons health.
That is my perspective…your perspective may vary, and I respect that.
Great post, Mike! Praying for your aunt and the rest of your family. I hope she has many, many, many days full of energy, peace, and happiness ahead.
IMHO, it comes down to each individual’s experience with their respective condition. If you’re a healthy, vibrant, productive person who isn’t dealing with the limitations of complications — YES, a “worse” dx might be devastating.
When my daughter was dx, I remember looking around that PICU and thinking…”I can’t do that” “Or that.” “Or that.”…”But I can do this.”
That being said…if she hadn’t survived her dx…T1 would be the worst possible thing E V E R.
If you’re blind, on dialysis, dealing with multiple amputations, infections, and paralyzed from a stroke…well…you may feel that nothing could be worse than a life sentence with T1. Perhaps, in that situation, a dx that carries a death sentence might actually be considered a blessing. (And I don’t say that lightly.)
Today, in our life with T1, there is SO MUCH to be thankful for and so many “worse” things I’m grateful not to be living with. But…that could change any day, any month, any year…because it all comes down to one reality vs another.
Mike, you’re so right about keeping diabetes in perspective! Certainly there are worse things and I do hope your aunt and your family can cope with her truly horrific ALS diagnosis. Charlie Rose, on PBS.org, has his Brain Series, which you can watch online. He did a program on degenerative diseases including ALS. Can you believe that an 11-yo boy has it? You may want to watch the episode for information and inspiration. God bless you and your aunt.
Thank you all for sharing your thoughts as it it helps to understand all perspectives.
I have type 2 with many complications including Nuropathy, renal impairment, Tinitis, Arthritis, Psoriasis etc but I empathise with those with terminal illnesses. Some days its difficult to remain positive, but then I bounce back and am glad that I did not seek a way out
I am 26 and was diagnosed with diabetes type 1 just 2 weeks ago. I thank you deeply for this article. I am a nurse, and have worked with kids and families with cancer. Yes, I feel occasionally overwhelmed by t1 diabetes. But I have seen much worse happen to much better/smaller/ more innocent beings than myself. I am very greatful that you wrote this article mike, as I haven’t found much positive support out there and perspective too
I am 26 and was diagnosed with diabetes type 1 just 2 weeks ago. I thank you deeply for this article. I am a nurse, and have worked with kids and families with cancer. Yes, I feel occasionally overwhelmed by t1 diabetes. But I have seen much worse happen to much better/smaller/ more innocent beings than myself. I am very greatful that you wrote this article mike, as I haven’t found much positive support out there and perspective too b
Hi Mike: very sorry to hear about your Aunt. Anything I have to say is intended to be compasionate and not comparative. Unfortunately these important posts that Mike initiated sent me into writing a long commentary. I don’t have “I-itis”, and I suspect many of you have sold yourselves short, because you “just” have diabetes! I am type 1 brittle D for a few decades.Along with this I have osteoarthritis, osteoporosis (also in my spine), reflex sympathetic dystrophy’fibromyalgia (almost 0 immune system, adrenal gland shutting down, have already shrunk 4 ” in height, my spine is unstable, with 2 herniated discs, jagged calcifications, stenosis, a few discs slipped over one another, bone rubbing on bone, 35-40% oxygen in my lungs (have never smoked), sleep apnea and use a CPAP machine, on prednisone always trying to weave off, have gained 40 lbs since Jan, am in excruciating, chronic pain& take of many meds., insulin up to 5x daily, at least 6 bsl pricks daily, take narcotics which help a little, am extremely depressed ……I wish everyone condolences and courage to live the best they can and never, think that” your suffering and challenges are more or less than someone else.and don’t accept your illness(es) as less severe as someone elses. Blessings to all …paint a smile on with lipstick if thats what it takes to get through a day and just try to be the best person you can be. Annie
You go, Mike! I’m proud of you for taking this exceedingly unpleasant realization and making something positive out of it. I have to say, I’ve never been offended by the “It could have been ______” statement, because although being diagnosed with diabetes was a hellish shock, and I CERTAINLY didn’t choose to get it, the reality is just as you state it: I can LIVE with diabetes, and die of something else. I’m at the age where some of my friends have started to deteriorate; they live in pain, and I’ve lost a few, including my lifelong best friend, from conditions that could not be treated. Of course, none of us knows just when the hour will come, and there is no why, it just is, but I know that I have just as good a chance as any of living a long, healthy life. That is a gift to be cherished, not moaned and groaned about, and I’m glad that you see that. I’ve learned to tread carefully around those who HAVEN’T learned that lesson, but there it is. Kudos, young man!