Life With Diabetes
I went to my mailbox on 2-13-2009 and there was only one thing in the box. It was a huge bubble envelope. As I slowly removed it from the box I noticed the return address said it was from Joslin Diabetes Center in Boston, MA. I had been waiting for this for some time.
To those who don’t know, Joslin Diabetes Center is said by some to be the best Diabetes research center in the world and if you visit their website you’d learn why. They are affiliated with Harvard Medical School, also.
Excitedly, I carefully opened the heavy envelope and removed the contents. It contained a rich burgundy colored jeweler’s box and a certificate in a royal blue folder.
Because I don’t get very many “gifts”, I opened the box first. It contained an Olympic sized medallion of bronze attached to a burgundy and white necklace. The medallion was engraved with the words, “Given by Joslin Diabetes Center, Boston, Mass.,USA…For 50 courageous years with diabetes.” The other side was engraved also with the words, “Triumph for Man and Medicine.”
There was also a letter inviting me participate in a study of long term diabetics. There are only about 450 of us who have lived for more than 50 years as Insulin Dependent Diabetics (IDD) in this country. What IDD means is you’ve given yourself an injection of insulin every day of your life since getting the disease. In my case that translates to 53 years and over 30,000 injections.
Wow, I thought! This is cool! I’ve never been awarded anything for having diabetes.
* * *
Now…Let me tell you a story…
In April 1956, I got Type I Diabetes at 12 years of age. I was an active kid who loved sports and had dreams of being an Air Force fighter pilot one day. The night I passed out and fell down two flights of stairs and was then rushed to Mercy Hospital in Springfield, MA, my life was changed forever.
I spent the next two weeks getting use to a life that was 180 degrees the opposite of what I’d ever known. I had been diagnosed with Type I Juvenile Onset Diabetes and my case was severe. I was semi-conscious and close to death when I was brought to the hospital.
The hospital staff was great to me except for the big nurse who resembled a Marine Drill Sergeant who said to me one day, “You will take this orange in your hand. You will fill this syringe with water from this glass. You will inject the water into the orange until I tell you to stop. Do you understand?”
“Yes,” I replied timidly. “But…why?”
“You have to learn how to give yourself injections of insulin for the rest of your life. The orange peel is just like your skin. Now, get to it. I’ll be back in an hour so you can learn Lesson 2,” she scowled.
Sure enough, she was back in an hour. She put down a covered metal tray, some cotton and a bottle of alcohol, and a small vile of something I’d never seen. She looked at me as she removed the cover from the tray.
“Inside this tray is a sterile syringe. You have to sterilize your syringe and needle before you use it by boiling it for 15 minutes every day,” she instructed sternly.
“Every day…for the rest of my life?” I asked in shock.
“Yes. Every day and for the rest of your life,” she responded.
“Well, I’m not going to do that,” I defiantly responded.
“She looked me straight in the eye, got close to my face and said, “You’ll do this or you’ll die. You need insulin to live and this is the only way you can get it. What’s it going to be? I’ve got other rounds to make.”
Pausing for a few seconds and feeling her eyes burning into me I disgustedly responded, “Okay. I’ll do it.”
She showed me how to put the syringe together and how to draw insulin from the vile. She then instructed me to put some alcohol on a cotton ball and told me to rub a spot on my leg for the injection site. When I was finished drawing the insulin into the syringe she instructed me to pinch my skin up and place the needle against my skin and quickly push it in and slowly depress the plunger.
I starred at the needle against my skin and looked up and said to her, “I can’t do it. There’s got to be another way.”
“Ronnie! Put the needle against your skin,” she ordered gruffly.
“You will,” she said watching me slowly lower the needle to my skin. As the needle lay against my skin she hit my elbow forcing the needle into my leg.
Suddenly I had that deer-in-the-headlight look on my face.
“Now, push the plunger to get the insulin into your leg and then pull the syringe out,” she commanded.
When I pulled the syringe out I thought I was going to pass out.
“There, now. That wasn’t so bad, was it?” she said as she stood with her hands on her hips.
Proudly, I responded, “Nope. It wasn’t as bad as I thought at all.”
A week later I was discharged from the hospital. As Dr. Hurley and I walked down the hall he said to me, “Ronnie, I don’t want you to be too concerned about diabetes. They’re working very hard to cure this disease and a cure is just around the corner. We’re all praying for that cure.”
As I look back, 53 years has been one long corner!
That was the beginning of my Diabetic adventure. I hated shots then and I still do to this day. However, I’m still alive and kickin’.
* * *
In a couple of weeks I was back to school. This was a challenge I hadn’t expected. I found my friends treated me a little different. Kind of like arms length different. My teachers were just as bad. School became very uncomfortable for me and grades suffered. I had trouble regulating my insulin which threw me into insulin shock almost daily. I couldn’t concentrate. Sports became almost impossible because the coaches really didn’t want the burden of having me around for fear something would happen to me.
My biggest emotional trauma happened in my freshman year of high school at age 13. I went out for the basketball team. I worked hard for three weeks and clearly beat my two buddies out for the position of Point Guard. After practice, Coach Lou Joselyn (ironic last name, huh?) called me into his office. Everybody knew I was getting my uniform and number. All my teammates were congratulating me. My little heart was pounding with excitement as I sat down next to Coach Joselyn’s desk.
Coach Joselyn sat back in his chair and clasped his hands behind his head and said, “You really worked hard this past three weeks. I never thought I would be close to making this decision with you but Ronnie, I have to cut you from the team.”
I was astounded. I just starred at the coach and asked, “Why? I beat everybody you threw at me. I’m better than anyone else out there at my position.”
He became a little uneasy and then said, “You clearly did a great job but I just can’t take on the responsibility of someone with a physical handicap as great as yours playing on my team.”
I slowly got up with tears in my eyes and simply walked out. I wouldn’t return to school for weeks. This one incident changed my life forever.
If that experience wasn’t bad enough what would happen a couple of months later put the final nail in the coffin for me when I tried out for the glee club and the music director, Ruth Perry, told me to learn to play tuba so no one would have to listen to my voice.
Needless to say, my school days were not a happy experience for me but in reality, that was my fault. I let the ignorance and stupidities of my “learned” teachers effect me. By the time I graduated high school in 1963, I had made myself promises I would never break including being successful in spite of my “handicap” and not learning to live with diabetes but making diabetes live with me. I stopped seeing all doctors for diabetes at that point in my life and until January 22, 2009, I hadn’t seen a doctor for diabetes for 46 years. I took care of myself and admittedly, anger was my fuel. Anger, I found, was one of those renewable sources of energy.
Oh, by the way, I did thrive in another sport in high school and I didn’t learn to play the tuba as Ms. Perry had requested. I became a musician, songwriter, entertainer, and producer for 18 years and recorded two albums in Nashville, TN. I enjoyed a great career. I even sent a copy of my first album to my old high school and thanked them for not cultivating any performing arts talent in me.
Caring for myself? Oh yeah! I affectionately called it, “Suicide by Any Sin Possible”. For 46 years I was a two-pack-a-day smoker. I just quit 3 months ago. Marijuana? Yes, and I “inhaled”…a bunch. The downside of smoking that stuff was the “munchies”, which wreaked havoc with my blood sugars. I also inhaled a lot of other stuff over the years and tried just about everything else I could get my hands on. For a lot of years I drank very heavily until I settled into a relaxed routine of just one bottle of Crown Royal per month. I gourmet cook and eat everything I cook and bake as well. You can’t beat my Bananas Foster! I have wine with every meal…red of course, to keep my heart healthy. And sex? I knew you were thinking about this so don’t be shaking your head. Well, I didn’t have 20,000 women like Wilt Chamberlain claims he had and I never kept count but I’d say I did okay seeing my band had nicknamed me, Humpy!
* * *
Six different doctors told my parents I probably wouldn’t see my thirtieth year. Well, let me tell you how that played out. Most of those six doctors were all dead by the time I was 30 years old.
I am now 65 years of age, entering into my third set of 30 year “life spans”. I’m 5’9.5” tall. I weigh a whopping 158 pounds and have been within 10 pounds of that weight since age 17. I’m kind of a “narrow” guy in stature. One could say I’m built for “speed”, not for “comfort”.
I just had my FREE Welcome to Medicare Comprehensive Physical Examination. To summarize the results, everything was all within baseline norms except my blood sugar which was 421 on the “fasting” blood test because I had a dinner party the night before and made Bananas Foster for ME and my guests. I guess I should’ve passed on the Bananas Foster, huh? Since then my blood sugars have been averaging 121 and for those of you “normal” people, that’s pretty good. My chest Xrays showed my lungs as close to normal as any “normal” person. My Ultrasound on my heart showed I was within normal parameters. No swelling in my Aorta. My “bad” cholesterol is a whopping 128 and the doctor wants it at 100 and wants me to take Crestor. I think I’ll just eat more oatmeal. In the words of my esteemed medical practitioner, “You look pretty good, Ron. Actually great for the way you’ve not taken care of yourself over the years.” Thanks for that tongue in cheek compliment, Doc!
My eyes, on the other hand, are another story. I’ve known for five years I had a cataract slowly developing in my left eye. Actually, I have cataracts in both eyes and they will be removed in March. Don’t get excited and say, “Ah, ha!” We all get cataracts starting around 30 years of age. It’s not a complication of diabetes. It’s more a consequence of aging and not wearing sunglasses and not wearing sunglasses is like asking, “How do you want your eyes fried?” I don’t have Diabetic Retinopathy, where you go blind from the complications. I don’t even have aneurisms in my eyes. I just hope when they do the cataracts that I’ll stop seeing every 400 pound Orangutan as a beautiful redheaded centerfold for Penthouse magazine. Maybe I shouldn’t be driving, huh?
My son, who is in the medical profession, tells me I’m a medical anomaly and he warns doctors not to tell me I’m going to die because that’s like signing their own death warrant. He’s a good kid. I like that he’s concerned for his peers. He got that compassion through my genes. He has always been concerned about me and my diabetes and my smoking. However, now that I’m not smoking he seems to be at a loss for words when we talk on the phone and our calls are a lot shorter because he doesn’t have smoking to complain about. That’s not a bad thing. In all seriousness, I feel a lot better now that I’m smoke free and he had a great deal to do with my decision to quit.
Diabetes is not one of those fun things to have. As a matter of fact, in my lifetime, I found if people learned you had diabetes you were treated as being akin to a leper. I found discrimination in the workplace early in my life. After losing employment opportunities at a young age, I stopped putting on my employment applications that I even had diabetes and voila, I was hired. The taboo of one having diabetes comes from the employer’s insurance providers. They don’t want diabetics on employer insurance policies and found the way around treating and controlling diabetes was to list everything as a “pre-existing condition” if an employee got diabetes. They wouldn’t cover anything that happened to anyone with diabetes because in their eyes, diabetes was the cause of the medical condition. Insurance companies also wouldn’t cover anything relating to monitoring or diabetes education. What a crock of BS, huh?
The other discrimination I found was from the Federal Government itself. The government tells us we diabetics can’t have a Commercial Driver’s License to drive semi trucks, we can’t have a license to pilot a plane, we’re kept out of a lot of jobs (government jobs included) because they have mandated diabetics as “handicapped individuals”. Make no mistake; we were treated as less than equals. We probably still are but I don’t have to deal with that any longer because I’m retired.
If you’re a diabetic don’t get too excited about collecting any benefits from the U.S. Government to help you. You may be handicapped but not enough to get help from the government. However, if you survive to age 65 as I have, Medicare, that little payroll deduction you’ve been paying for all your life, will kick in and you will finally have benefits as long as you make small co-payments. I’m still trying to figure out how I can file for alien status and get $2800.00 per month, plus housing assistance, fuel for my vehicles, and get all my medical needs free. However, it doesn’t look like that will be happening.
I really look forward to participating in the study Joslin Diabetes Center is doing with long term Insulin Dependent Diabetics like me. I believe there is something in my DNA that could make this disease a lot easier to live with for other people. I don’t think I’ve missed much in my life and I want people to know, it’s okay to experiment. I want them also to know that feeling good and being healthy starts with that “grey matter” between our ears. A strong positive attitude will do more for a person than anything I know of living with this disease. You’ve probably already guessed that I have a lot of “attitude”, huh?
I’ve even gone so far as to consider leaving my organs to research with Joslin and Harvard. I really believe there’s something there. If there’s something in my DNA that can help one child not have to live as a hostage to this disease, it will have been worth it. I only pray that if they find it they use it.
I’m not so naïve to think they’ll ever cure this disease. They won’t and if they do we’ll never know about it. Why should they cure diabetes? Dr. Hurley’s “there’s-a-cure-just-around-the-corner” theory was and is a pipe dream. It would be fiscally stupid to cure diabetes. Why would anyone want to cure a disease that makes TRILLIONS of dollars a year on simply CONTROLLING that disease? In a global market economy that would be incredibly stupid. Think about it. There are approximately 20 million diabetics in the U.S. Worldwide…there’s 250 million. That translates to big bucks.
The differences between Type I and Type II diabetes are immense. I find the best way to describe it as Type I or Juvenile Onset Diabetes, as I have, is mostly inherited through a person’s gene pool. Type II diabetes, for the most part, is self inflicted. We have eating habits in this country that are insane and suicidal. We are by far the most obese nation in the world and make no mistake, Type II diabetes thrives on obesity. If you’re overweight and you don’t change your eating habits, increase your metabolism, and exercise I can guarantee you will get Type II Diabetes at some point in your life. It’s scary to think about, but it is said that one third of all babies born today will get diabetes at some point in their life. That is a huge number of people!
Don’t get me wrong. I know I’m a bit cavalier, sarcastic and somewhat cynical about my life with diabetes. However, there have been amazing strides made by researchers like the ones at Joslin Diabetes Center to make life easier for diabetics to control and maintain their lives with this ugly disease. Things like insulin pumps, new insulin types, monitoring devices that are easy to use, and diabetes education programs. All of these things are great and valuable and have provided many people with more freedom to live normal and productive lives.
Well, as they say, “Live long and prosper”. I know I’ve not been perfect but I’ve done okay.