Recently I attended my first JDRF support group. I had no idea what to expect. After shoving my way awkwardly through the heavy glass door of the Garden Cafe I was greeted by the stare of six surprised women. They looked at me as if I were the Boogeyman coming to snatch away their cold pressed juices and fruit parfaits. Each of them was a mother of a T1D child. Seeing me was like seeing their biggest fears in the flesh.
I clumsily wheeled my way to their table at the opposite end of the cafe where they sat gawking at my slow progression. I bonked into every single bar stool in my path. With every collision a loud screech reverberated throughout the nearly empty eatery. The six women leered at me suspiciously, mortified that this two wheeled monstrosity was making its way at a snail’s pace towards them. The way they looked at me made me feel like Ursula coming to claim their voices.
I was their every fear for their children’s future come to life. I am nearly every complication associated with T1D that makes family, friends, and fellow T1D’s lie awake at night. I realized as I knocked into the 207th stool I was the Boogeyman incarnate to these women. My smile began to stretch into the forced emoji smiley (😬 this one always makes me squirm uncomfortably when I see it). I parked my chair at the empty spot at the end of the table. I decided it was best not to make another bowling ball out of myself and wheel through the pins of bar stools over to the incredibly tall and out-of-reach counter to order a measly tea.
As soon as I parked my chair as confidently as my all thumbs hands would allow, several of the women began conversing among themselves. I quickly noted to keep my mouth shut until spoken to. With the exactitude of a taxidermist I slowly peeled my gloves from my hands and other cyborg looking accouterments attached to my body, to their horror. I sat in my own little world twiddling my nervous thumbs. A sweet two month old baby lay in her car seat nodding off sleepily. I envied her ability to escape into her dreamworld. I couldn’t help but coo over her while the women continued their conversation. As I looked up at her mother I was met with a sharp nod. I backed off sheepishly from my love fest over her daughter. She quickly looked away and stared at the much more interesting plaster white wall dead ahead of her. I cursed the JDRF website for not including more details in the description of this support group. Like, “JDRF coffee talk: join us if you're a mom who can afford six dollar coffees, must have dewy glow from morning Pilates class, and enough Botox to prevent wrinkles from all of the worry your T1D kid causes you.” I felt like the ugly duckling amidst a brood of preening mother swans.
All at once their heads swiveled towards me. In unison 12 eyes fell upon my shrinking shoulders. My head nodded vehemently as if bobbing for apples, “Hello! My name is Ali. I saw this meetup on the JDRF website and am excited to be here! I’m new to LA - well kind of new I’ve been here a year - and this is my first JDRF meeting!” I felt like automaton.
Aaaaand then I launched into my spiel about why I am in a wheelchair, “I was diagnosed with Charcot Foot in both feet a few months ago. Charcot is a complication of neuropathy, which is a complication of T1D. So it’s like having Russian Doll complications, one fits inside of the other, and I've always liked dolls.”
I began rattling off my other complications with a shaky grin which I’m sure assured them to never let me near their children because I would not only infect them with my Boogeyman disease but I'd probably devour them as well, “Let’s see I have retinopathy which is being treated as we speak so I shouldn’t go blind according to my doctor, gastroparesis so I won’t be ordering anything here unless they serve a good organic baby food. Let’s see, I already told you about the Charcot and neuropathy, pretty much when I walk my feet break like glass so I’m wheelchair bound now. My doctor believes I’ll be able to walk to the bathroom eventually which will be great for when I’m having a gastro accident if any of you have experienced THAT fun yet.”
As I cheesily chuckled and faked an elbow in my neighbor’s side, pity and horror filled their faces. I quickly reigned in my tactless form, cleared my throat, and furrowed my brow, “But you know life is good, it’s really, really good. I lived for a long time in fear of diabetic complications and here I am with nearly every textbook problem save for my kidneys… But life is still great and I am able to cherish so many more things now that I know how fleeting our body’s health can be. I actually feel freed from living in fear by the very things I feared coming true. I’m happier than I ever have been.” I was met with crickets. I had become the Boogeyman who knows how to boogie, man.
A slender, noble looking mother who I’d later learn has two children with T1D looked me straight on without hesitation sitting stiffly but not coldly, “Do you have these things because you didn’t take care of yourself?” she bluntly asked.
Whenever someone without diabetes asks that question, or uses the term “not in control” it ruffles my feathers. In the past I would have been defensive and huffy retorting with, “I’m in PERFECT control. You have no idea what living with T1D is like. YOU try taking ten shots a day, drawing blood from your finger every time you eat, drive, wake up, nap, in the middle of the night. YOU look at a plate of food as not nutritious but vicious towards your body. How about YOU experience how high blood sugar can make you want to strangle anyone who speaks above a whisper, or having a low makes you feel like you’ve been out all night drinking until you’ve blacked out. YOU try and let me know how easy it is to “control” your diabetes seeing it’s so easy for that question to roll right off your tongue.”
I’ve since learned no one is accusing me of being a bad diabetic, or implying it’s easy to manage. Those reactions are just my own feelings of inadequacy and imperfection when it comes to the art of balancing my blood sugar. Now I recognize when people ask if I have taken care of myself it’s true inquisitiveness and concern for my well being. Now I take the opportunity to educate others, and remind myself, of what living without diabetes is like. And the best way to do that is by answering honestly.
“Yes, I did not take care of myself. I was diagnosed a month before I left home for college. I told myself I would get things under control tomorrow, or the next day, always making excuses. I thought I deserved a “normal” life and had time before all of these complications I had been warned against by foreboding doctors would happen to me. I even believed I was special. How could I, Ali Dugger, lose a leg or my eyes? I told myself I was different from other diabetics because I took care of myself in other ways like by exercising daily and taking 20 different all natural supplements like Bilberry extract. I didn’t take care of myself and you could say I’m facing the music now. But I find the music beautiful and still worth dancing to, and for some reason this is the melody that was written for me, and only as long as I learn the steps as I move forward and let go of the fumble or tumble I took during the last measure can I be graceful in my steps now, leap into the next beat as life drums on, and stay limber for what else is to come.”
I don’t blame them at all for reacting to me the way they did. A mother’s biggest fear is seeing her child suffer and not having the power to prevent the pain. And then at the very place you’ve sought solace and comfort from those fears here I show up, holding the banner high in the sky when it comes to living a life full of diabetic complications. It must have felt like an invasion of their safe zone. I was the Trojan horse shining and smiling with hidden, hurtful forces within me come to destroy their city walled off from the war on diabetes.
I understand why the woman with the baby couldn’t bring herself to say more than three words to me. Her eldest had just been diagnosed one month ago, he is only two. She is just learning what living with diabetes looks like. It’s one thing to hear from a doctor the risk of kidney failure, amputation of limbs, blindness, dead in bed, paralyzed stomach, heart complications, but to see many of those complications sitting in front of you, as well as bizarre French sounding debilitations such as Charcot and Dupuytren’s Contracture, must be terrifying as a new diabetic’s mother. When she attempted to share her feeling of incapability when trying to keep her son’s sugars within range, tears welled in her big blue, beautiful eyes. I could feel the crushing weight of her burden sitting atop her perfectly poised shoulders as she scooped up her newborn and held her close. The other mothers reached for her understandingly. I desperately wanted to comfort her as well but I knew anything I said would only cause more anguish. I was exactly what she did not want to face in her future. The best thing I could do was sit and respect the barrier of her silence towards me and just listen. Oftentimes, no matter what wise words we feel we have to offer for help, listening is the wisest, most helpful thing we can do.
In these last few months I have become accustomed to having lavish praise heaped upon me when people see me crawl into
Ubers, navigate crowded streets, balance atop my wheelchair to reach the Glucerna bars on the top grocery shelf, or just share my story with strangers. My Uber who had dropped me off at the cafe had just exclaimed he felt honored to have been my driver and hoped I didn’t feel strange that he believed he had a great love for me. He grabbed my gloved hands, gave them a chivalrous kiss, and promised to never forget our ride. Admittedly, when people share their admiration for how I handle my circumstance it makes me feel validated, like a reassurance I am coping well. This was the first time I had felt like a pariah. As well intentioned and good hearted as I believe these women were, I felt like a boil upon the most soft, unblemished skin. And I must stress that they tried very hard to include me in the conversation as the meet and greet continued. But it was obvious we were in two separate camps, and there wasn’t a spot for me at their campfire no matter how warm they tried to stoke the flames.
We never know what we will bring out in other people. Sometimes we inspire hope, other times pity, maybe even from time to time repulsion. One thing I've discovered is no matter how people react to me, I cannot control it, no matter how positive my intentions may be. I cannot superintend my own hopes for how I am received onto another's feelings. I have no idea what they have been through in their life and it may be I remind them of someone horrible they encountered years ago, or just the sound of my voice rubs them the wrong way reminding them of their neurotic aunt. Just as I cannot control people's feelings towards me, I must recognize my own reactions are affected by my personal experiences and insecurities. I am positive those mothers had no intention of making me feel alienated or like the Bubonic plague. It was my own inner turmoil and discomfort coloring my judgement of my reception. In the end, the only thing I can trust is my belief that however we react personally to one another, those reactions are opportunities for us to learn something of value. Even if a person reacts cruelly, or with repugnance towards you, it is a chance to ask, "Why is it I'm responding in this way? What is it within me that takes such offense to this?" and also, "What can I do within myself to accept this person for where they are in their own struggles in life. And how can I change my own perception so what I'm feeling can just be rain on my umbrella, rather than a deluge on my mood." Then, it's much easier to not only protect yourself from being affected by others, but allows you to accept people for where they are on their own journey.
There are things those women will never be able to relate to when it comes to living with diabetes, and there are things I will never be able to relate to when it comes to being a mother of a T1D. My mother shared with me her feelings after I returned home. She is a mother of two T1D children herself, "The guilt is tremendous. Guilt for passing on the gene, guilt for what if I had done something different, guilt for not being able to control my child's blood sugar. My opinion is the guilt, anguish, frustration and anger is what these women are suffering from, they are trying to hold it together and need support from others that can validate that. There's nothing else to say, it's just painful. I see people everyday like the ones you saw today. The strongest thing I can say is keep control and there will be a cure for diabetes very soon. Diabetes rips many families apart. Couples struggle with trying to do their best, and the other children often feel left out because the child with diabetes gets all the attention and everything is arranged around them. It's just painful."
When I think of the stress, endless sleepless nights checking sugars at all times, constant worrying if your child is going into DKA or about to have a seizure, having to be an expert when it comes to educating others on your child’s disease, having to be an advocate at all times for your child to not be discriminate against, fighting insurance companies and incompetent doctors, ensuring you have a pharmacy of medications on hand at all times, and just the tough job of being a parent in general, my respect for parents and caretakers of T1D children is greater than for Mother Teresa herself.
You cope with obstacles no parent fathoms facing when carrying their child and dreaming of their life, your life, and what the future holds. Never did you expect to have to have juice boxes stuffed in coolers at every sports event ready to run onto the field and prevent your child from dropping into a coma just from running a few laps. Never did you think you’d be lying awake at night waiting for 2:00 a.m. so you can prick your child’s finger to see if they are in danger of never waking up again. Never did you dream you would be fighting with your child because all they want is that ice cream cake for their birthday and you know that may cause days of battling high blood sugar. The pain and suffering you see your child endure must feel ten fold within you. The guilt I have heard my own mother share about what she should have done to get me on track, reliving the past and what she could have done differently to prevent my current situation, pains me. I’ll never forget when she came into my bedroom a few days after I was diagnosed with Charcot. She stood above me as I sleepily rubbed at my eyes. Looking down at me and said, “If only I had pushed you harder and not let you push me away. If only I hadn’t cared about upsetting you and letting you learn your own life lessons. If only I had forced you to just take care of yourself… I wonder what could have been different.” The pain and anguish reflected in her eyes cut me to the core. All I could do was take her hand and say, “Mom, you did everything you possibly could have. This was meant to be and I am eternally grateful for how hard you’ve always fought for me. I’m listening now, and I’m here now.”
I will never claim to know your plight or struggle. But I do know I would never wish the emotional burden and responsibility of caring for a T1D child, or adult for that matter, upon anyone. I do know I hold you all in the highest esteem and you deserve a Federal holiday in your honor. I do know you welcomed me with open arms to your meeting and tried so hard to make me feel at home among you. And I believe it must have been so difficult to invite the Boogeyman to sit on your bedside, share in your bedtime story, and attempt to welcome the very monster you’re trying to protect your children from being destroyed by. Thank you for sharing your stories and letting me listen to you today. I’m eternally grateful and recognize the many different fears my story represents for you. I hope you too were able to see me and realize that even if some of the worst complications befall your beloved ones, they can still lead happy and joy filled lives. Thank you for bursting my beacon bubble and showing me you’re the true unsung heroes of this disease. Happy Mother’s Day. You deserve to be revered every day for what you endure, the strength you summon, and the will to carry on no matter how heavy your load becomes. Even when your child is fighting back and railing against you, refusing to take their shot or allowing you to give them that life saving Glucagon injection, know that someday they will see you as their hero. I know I already do.