As I celebrate 32 healthy years with type 1 diabetes, I grieve a recent loss

Disclaimer: I am not very good at expressing my emotions verbally and in the past, I grieved a more privately than I do today.  My former action(s) towards grief mostly concerned bottling it up and quarantining it into the section of my brain that was not involved in my daily goals of efficiency.  As I got older, I have realized this not very healthy.  A few years ago, I lost a close friend.  A few days after that, I put my feelings into words and made a post to a private, diabetes focused Facebook group that helped me grieve his loss.  This past weekend, I learned about another friend’s passing and have decided to write this...

This post will focus on my grief writing while sharing a story or two and a little about my 32 years living with type 1 diabetes.  This is for J and Frank, the diabros that I will remember during this and every Dia-Birthday.‍‍

‍On January 13th, 1988…

Dr. James "Pop" C. Thrailkill, MD - Cheraw, South Carolina - passed away on January 13th, 2010

As a kid, I was always very active and always played outside. My grandfather, "Pop," was a small-town physician about 2 hours away in Cheraw, South Carolina.  At that time (late 1980’s), my family lived in Columbia, SC.  Occasionally when we were sick as kids, my mom would call him with our symptoms to see if he could remotely diagnose what was going on and save us a trip to the doctor.  During a few weeks after Christmas, my energy slowly decreased, my thirst grew unquenchable, and I no longer wanted to play outside.  My mom noticed these changes and just thought I had a virus, so I stayed home from school, but things did not improve. On the day she noticed my lips turning purple, she called Pop...

As I mentioned, Pop could diagnose most common illnesses over the phone and would call in an Rx when he was sure of the diagnosis. My mom called him the morning of January 13th, 1988 and described my symptoms. In a way that only Pop could, he calmly told her to take me to my pediatrician and to pack me some clothes in a suitcase because I would likely be in the hospital for a few days. Upon hearing this, I remember my mom showing signs of a controlled freak out.  She acted on his suggestion and away we went... I would learn years later that after ending the call with my mom, Pop called my Aunt Betsy who also lived in Columbia. He told her that she would need to head to the hospital because I was going to be admitted and diagnosed with Juvenile Diabetes (Type 1).  Pop didn't want to be the one to tell my mom what he already knew to be true...

Upon arriving at the Pediatrician, they checked my blood sugar, and although I do not remember the exact number, I do know that it was between 700 and 800.  I was immediately admitted to the hospital, started on insulin, and told later by Dr. McKenzie that I had Type 1 diabetes.  That day, I also met Dr. Frank Bowyer, a great pediatric endocrinologist. He thankfully convinced my parents to send me to Camp Adam Fisher less than 6 months later. Allowing me to attend Camp was an extremely tough decision for my parents but one that I am forever grateful.  Without the best friends I made and the personal diabetes knowledge I obtained from others at Camp, I do not know that I would be where I am today with my personal diabetes management...

Although sad, I think it was very fitting that my grandfather (Dr. James C. Thrailkill “Pop”) passed away on the very same day that I was diagnosed, January 13th, 2010. Therefore, I also celebrate the 10th anniversary of his passing.  He was truly a great man.

Diabetic Mental Health

Living with Type 1 Diabetes is a physical and mental battle, daily. The Highs and Lows of diabetes come in the form of data points on blood sugar result graphs and A1c tests. As you age, the data grows into cholesterol, Vit D, triglycerides, kidney and liver function, etc. and many others. A diabetic’s mental health is much more difficult to quantify. Most medical practices ask the typical mental health questions during routine patient appointments for their EMR (Electronic Medical Record) documentation, but they do not always catch everything. Some pediatric providers, like CHOA (Children’s Healthcare of ATL) now have mental health providers as part of their practices to work with young patients as they age into adults.

One of the friends I met though camp is Bethany. She’s a type 1 diabetic, Nurse Practitioner, and a good friend. A few years ago, she verbalized what I had been thinking for a long time. “There is no good or bad blood sugar, only in range and outside of range” (aka high, low, or normal). Extracting the emotion out of the results from diabetes makes it much easier to decide what happens next (course of treatment). It also removes much of the “victim mentality” from the equation that allows many diabetics to have a long term “pity party” instead of taking better care of themselves. This emotional detachment must be practiced every day and, in my opinion, has helped me to live 30+ years without any significant issues (knocking on wood as I type).

While this has been relatively easy for me, it may not be as easy for others that do not or may not have the same level of support.  Attending Camp is a great way for younger diabetics to interact with other like them, but even that may not be enough for some.

Little Dia-bro

‍The following is copied and pasted from my post on the Diabetes Shit Talking Facebook Group on April 20th, 2016…

I need to use this group as somewhat of a confessional…

I’m not proud of my actions that I’m preparing to describe so please bear with me; I hope it can be cathartic...

First, diabetes is not an easy disease; many of us know people that greatly struggle with their disease on top of all the other problems of life. If these describe you at all, please reach out to someone you know for help and support…

I started attending Camp Adam Fisher in 1988, 6 months after I was diagnosed. In the 90’s I became a CIT and a counselor. For several years, I had the same group of guys, and got to watch them grow up. One of the guys in my cabin for all those early years as a CIT and Counselor was “J” (out of respect for him and his family, I will not use his name).

“J” was a great kid, athletic, outgoing, smart, and funny, took good care of his diabetes, and was the natural leader amongst our cabin of campers. In 1999, I was a freshman in college and was doing an internship in Charleston. During camp that year, I learned that “J” didn’t live too far away from me and after camp; we agreed to hang out while I was close by for the summer. “J” was a lot like me, grew up as the son of a minister, had 1 sibling, a supportive mother, loving family, and also had diabetes. I would learn later that we both also had substance abuse in common. I tried to make time every other week or so to hang out with “J,” and over the summer, he become my pseudo little brother. As the summer ended, I went back to college, and for a few years, was not able to attend camp due to internships in various other areas of the country.

In 2004, I came back to Camp Adam Fisher to find that many things had changed. “My group” of guys didn’t really attend camp anymore. As the years progressed, I would hear various things about “J” via others and his struggles with substance abuse. Last year, a few months prior to camp, I received a Facebook message from “J” asking if we had any room at camp for him. We reconnected and discussed the possibility of him coming back. Even though I had many reservations on his return to camp, I heard something in his voice that was desperate for something positive, and after discussing the situation with camp leaders, I supported his return to camp, and they did cautiously as well.

When he arrived late to Camp looking somewhat worn, he mentioned going out the night before, and said he would be OK. My “gut feeling” told me that something else was going on; however, I accepted it but kept an eye on things. Campers arrived and camp proceeded… As the Head Male Counselor, it was my responsibility to oversee the male staff, and make sure everyone was doing their best. “J’s” co-counselors alerted me to some erratic behavior and his need to stay in the room and sleep. Upon hearing this, I met with “J” in the room, and asked him how everything was going? He seemed off and I witnessed the erratic behavior. My first inclination based on his symptoms was that he was going through withdrawal….

I spoke with camp leaders and the medical staff about what I believed to be happening. We agreed that it would be best if he were evaluated by the medical staff before jumping to any conclusions. I escorted him to our med staff; they performed an exam and allowed him to rest in the med lodge. The doctor wasn’t sure what was going on; however, knew that he wasn’t well and could not rule out withdrawal without more tests. We agreed that it would be best to allow him to sleep and once he woke, to tell him that he was “ill,” could not remain at camp, and should get home to see his family doctor. After communicating this to him, I will never forget the look on his face, he was totally defeated.

I helped him pack his bags and he mentioned not having any $$ to get home. I told him not to worry about it and we would take care of it. We got him $40 to get home and helped him get his bags to his car. The car he was driving looked more like a bed than a transport vehicle. The trunk was packed with what looked to be many of his possessions. He was getting emotional as he packed up his car; however, before climbing into the driver’s seat, he gave me a hug, told me “love you man, “ I said “love you too bud, take care of yourself, and we will catch up later.” As he drove out of camp, I knew we’d made the right decision to send him home, but I felt horrible about it.

I got a text from him later that night...

“Hey man, I’m home now Dan. Sorry for putting you all in that. I feel like such a letdown to camp for not sticking it through. I def want to come back next year if I am aloud. I will make sure to be 110% and be on time next year also. Please stay in touch with me dan. I want to make all this up to Camp Adam Fisher in any way I can. Love you! Sincerely, “J.”

I called him immediately, he admitted to going through heroin withdrawal, and had stopped just before coming to camp. I thanked him for his honesty, told him that he didn’t let anyone down, to get better, and for us to stay in touch.

Once I got home, we texted back and forth randomly over the next few weeks, spoke a few times, and I sent him some insulin to help get him by for a bit. With Joe and I building a house, moving twice, and dealing with the trials of life, “J” and I again lost touch in October when he didn’t return my text. Based on his posts on social media, it looked like he was traveling down a better path.

This past weekend, I participated in Camp Kudzu’s Family Camp, and as always, had a blast! I got to reconnect with a childhood camp friend that I hadn’t seen in 22 or 23 years, it was great. As the same time, I thought about “J,” and wondered how he was doing.

As we get closer to summer, I begin to review my pre-camp duties, and start checking in with camp leadership. Yesterday, I was on the phone with the Camp Director while sitting in the gym parking lot and he then told me that “J” had passed away in February, and wasn’t sure of the cause… I just sat there for what seemed like several minutes, but what was probably 30 seconds… he and I didn’t talk much after that, he took my cue to end our chat, but I thanked him for the information….

If you are a “strong” member of the diabetes community and ever experience someone reaching out, PLEASE remember this post, reach out, and don’t stop reaching out even if you think everything is ok…

The diabetes community is a tight knit and close family. I lost my “little dia-bro” and hope sharing this story will help someone else out there take the cue from another in need and not stop reaching out...

‍I did not live out my promise to “J” and though I know I am not directly to blame; it does not change the guilty feeling.

Recent Loss

‍Several years ago, I served in a leadership position for Camp Adam Fisher (SC). Adam Fisher is one of the longest running, volunteer run overnight summer camps for kids with diabetes in the US and celebrated its 50th year in existence in 2017. My former position allowed me to talk with the families of kids applying to come to camp and in some cases, the kids themselves. During one of my phone chats with a family, they expressed heavy interest in their teenage son coming to camp; however, he was heavily involved in band and was not sure whether his summer band schedule would allow him time for diabetes camp. After speaking with one of the parents, they wanted him to make his own decision about whether to attend and asked me to talk to him directly. A few day later, I got my first opportunity talk to Frank over the phone. He was your typical awkward teenager and didn’t say very much. We talked about band, his life, his diabetes, and his summer plans. It sounded like he was an accomplished trumpet player but also wanted more diabetic friends. By the end of our chat, he had decided that he wanted to make time for Camp and planned on attending. I felt pretty good about my chat with Frank and looked forward to meeting him in person later that summer.

For those of you that never attended a summer camp growing up, there is an unspoken hierarchy at every camp. This “caste system” is determined mostly by your length of service. The longer you’ve attended, the higher your hierarchy in the caste. This unspoken system is mostly, not negative. It means that the most experienced volunteers occupy the official and unofficial positions of leadership. This is VERY important when working at a camp for kids with diabetes or any other health condition where experience is vital. Since many volunteers tend to come back year after year, camp friendships among those battling similar health conditions are some of the strongest. Many new attendees report difficulty breaking “the group,” but understand why that is once they do… Frank did not struggle breaking in in the slightest, he fit in perfectly.

From what I recall about Frank’s first year of camp, he started off as somewhat quiet, but by the end of the week, it seemed like he had been there for 10+ years. He fit in with everyone. After his first year, Frank came up to me and thanked me for talking him into coming to Camp. He could not wait to come back next year.

Over the next few years, Frank participated in the CIT (Counselor in Training) program and eventually became a counselor. He was the most energetic, engaging, respectful, mindful, thoughtful, courteous, healthy, athletic, and artistic male counselors and role models that I have ever met. I remember one long time female counselor making the comment that, “if I was 10 years younger, I would totally be into Frank.” Frank was loved by everyone in the Camp family.

Due to our growing family in Georgia, I was only able to attend camp 1 out of the last 3 years (in 2018), but still got to Columbia on occasion. This past summer, I got to have a beer with several Camp friends including Frank.  Just like always, it felt like no time had passed and we picked up right where we left off. The conversation flowed as easy as the beer and we quickly caught up on each other’s lives. We all went out that night and had a blast. The next day as I was driving home, I could not stop thinking that something was bothering Frank and texted him to check in. I chalked my feeling up to him being in the weird stage of life where he was done with school but not sure about life.  We texted back-and-forth for a few days. He assured me he was cool, just figuring out work, diabetes, health insurance, etc. I offered to chat anytime, told him to let me know if he needed any supplies, and promised to hit him up the next time I was in Columbia.

This past Saturday evening as I was getting into bed much later than normal, one of my oldest and best friends, Maria, texted me… “You Up?” As soon as I read it, I got a weird sinking feeling in the pit of my stomach that something was wrong, Maria very seldom texts me at 11pm on a Saturday night. I quickly replied, “Yeah, what’s up?” Joe (my husband) was just getting ready to grab a shower when I told him that Maria had texted me, I told him that I had a bad feeling. I could not wait anymore and called her, she answered quickly… “Wanted to let you know that Frank… passed away.”  We sat silently on the phone for what seemed like several minutes but was likely only several seconds. The first thing I felt was an overwhelming sense of guilt.  It has subsided only slightly since Saturday.

‍Now What…

‍As a type 1 diabetic, you literally bleed with those around you at camp.  Experiences like summer camps allow kids to grow up next to kids like them.  Over time and year-over-year, this can form bonds that can be stronger that those formed by family.  When I mourn the loss of a member of the “camp family,” it’s almost like losing a brother or a sister.

I have found the best way to cope/grieve is to be better tomorrow than you were yesterday, for yourself, and for their memory.  Other than writing, you will likely see me lifting a bit heavier or for a few more reps, running a bit faster or a bit longer, or cranking out a few more swings or cleans over the next few weeks.  My playlist will likely consist of either very loud, angry music (Deftones, Tool, Alice in Chains, etc.) or very somber music (Coldplay, Snow Patrol, Muse, Pink Floyd, etc.), all while thinking about Frank, J, and others that I’ve lost over my 32 diabetic years.  I have shed a tear at the gym and will do so again...

If you read this post, please take away 2 things:

#1.  If you have or know of a child with type 1 diabetes or any other chronic condition, get them to an overnight summer camp in your area that caters to their condition.

#2.  If you are a “strong” member of your community and ever experience someone reaching out, PLEASE remember this post.  Reach out and don’t stop reaching out, even if you think everything is ok…

If you want to have a constructive conversation about this or anything else, message me, and let's grab coffee or a beer.

Have a good one,

Dan