I have a great many things to be thankful for. I have a wonderful wife who is also my best friend, two fantastic children who have turned into remarkable young adults in spite of my mistakes, a broader circle of friends than I ever thought possible, and respected colleagues with whom I have done meaningful and important work. I am a rich man.
But, I must admit that sometimes my baser, more petty nature gets the best of me. Parkinson’s disease has had a wide variety of effects on me, many of which I have described to you in agonizing detail over the last few months. I’ll clue you in on a little secret, though; even though I try to beat it back, having this disease sometimes makes me angry. Sometimes, it makes me so angry that I temporarily forget all of the things that I have to be thankful for.
I know that it’s supposed to be more virtuous to light a candle than to curse the darkness. However, having both a military background and a Texan heritage has firmly convinced me that there is at least some cathartic pleasure in a good cursing session, and if anything deserves a cussing, it’s Parkinson’s disease. So, with no disrespect intended to Julie Andrews in “The Sound of Music,” here are a few of my not-so-favorite things.
1. It makes me angry that the phrase, “I need to use the restroom–I’ll be right back” is no longer part of my vocabulary.
2. It really ticks me off that the best sleep I’ve gotten in the last 6 months is in the car, idling at a stoplight.
3. It irritates me that the first course in all of my breakfast meals these days consists of a handful of expensive, multicolored pills that make me feel better and worse in equal measure.
4. It REALLY irritates me that I wash down my breakfast pills with something called, “Miralax” mixed into whatever liquid is available in the refrigerator.
5. I am GALACTICALLY irritated that I have grown grateful for this odd breakfast meal.
6. It tightens my jaws that it takes me as long to get out of the car as it used to take me to dash into the store for a bottle of wine.
7. It perturbs me to no end that I don’t drink wine anymore because it tastes like rubbing alcohol, and that I don’t drink beer anymore because it tastes like wet newspaper.
8. It makes me both angry and sheepishly embarrassed that, on the rare occasions when I do have a drink, it’s usually some multicolored concoction with fruit spilling out of the top of it and a long tropical name, because it seems that I taste fruit flavors better than anything else. It just makes you feel somehow less tough to tell the bartender, “I’ll have a triple mango piña colada mai tai with extra banana rum and a splash of blue curaçao” than to walk into a bar, spurs jingling, and say, “Scotch. Single malt. One ice cube.”
9. I would never go so far as to actually get angry at them, but it does feel like a violation of the laws of nature for elderly women to hold doors open for me.
10. It does, however, make me angry that I have begun to expect elderly women to hold doors open for me.
11. It irritates me that my wife is suspicious of my judgment; it really irritates me that she is beginning to have reason to be.
12. It upsets me that people make such a big deal out of a simple little thing like accidentally stepping through the sheet rock in the bedroom ceiling when I’m working in the attic pulling Ethernet cable. Alone. In 130° heat. All day.
13. When I realize that those people have every reason to make a big deal out of it, and that I’m going to need to start thinking harder about what I do and when I do it, even for things I’ve done my entire life–now, that really upsets me.
14. It makes me angry that the money that I used to spend on scuba equipment I now spend on co-payments for doctors. A whole lot of doctors.
15. When my brother asks me if I would like a cork for my fork so I don’t stab myself in the eye, I don’t get angry. I just think of ways to get even.
16. I become righteously indignant when my wife tells me to swing my arm when I walk. I become less righteously indignant when I realize that I’m actually not swinging my arm, and that it is curled up on my chest.
17. It makes me deeply angry that the medical community in the US spends more on the development of drugs to improve bedroom performance than on research to find a cure for Parkinson’s disease.
18. It’s revolting to me that our politicians think that political infighting and reelection campaigning is more important than funding for a national registry for neurological diseases, which could help us determine the origins and causes of Parkinson’s disease.
19. I’m grateful that research is going on somewhere. However, it upsets me that some of the best research into cures for Parkinson’s disease is taking place overseas because of funding limitations here, even though I have personally met some of the most intelligent, committed, and capable scientists and medical professionals that exist anywhere in the world right here in the US.
20. I am absolutely incensed at the suffering, pain, lost capability, and degradation in quality of life that Parkinson’s disease inflicts on good people. I hate this disease, and I want to see it disappear from the face of the planet.
On the other hand, I do have 14 helicopters. Things could be worse.
POSTSCRIPT: Some of the above rant is slightly exaggerated for effect. I’ll leave it as an exercise for the interested reader to determine which parts (hint – I actually LIKE pina coladas. Don’t tell anyone).
©2011, Corey D. King
6 thoughts on ““Raindrops on Roses…””
The thing that really chaps my hide is that I had to get a disease that is not only misunderstood by the general public, but by the medical community as well.
Thank you for your Transparent and “straight up” ink. I knew you would be valuable to follow when my Twitter Pal FMDGirl Kari Ulrich
placed you with some of her favorite folks.
I’m so thankful that we have blogs, Facebook and my favorite Twitter to both teach, learn and support each other.
Again, thank you for sharing for indeed it does make a difference.
Thank you, Lisa – I haven’t met Kari yet, but we’re both attending a Mayo Clinic summit on social media applications for patient advocacy. I look forward to following your tweets!
Dear Corey, thank you for being so open in your blog about your feelings, this really helps me for one and I am sure many of us with PD; I am not a man, so asking for a fruit drink does not bother me nor does any-one holding doors for me, but let me tell you your blog really hit home, I cried because of it being so familiar to me, and yes I feel angry because of those things too; I have been just as you very active all my live, fast thinker, doer- er on top of the world all my life.
Now the acceptance of not being the same, noticing myself that my brain works different is the hardest to cope with, besides as you say the family who want to protect you to much
(understandable) from yourself, still it irritates me and feel leave me be!
Oh yes Corey I understand exactly what you are saying, thank you again.
I love your writing!
Your friend Lenny.
Wow! That blog touched me! Hit home as well as funny. I really enjoyed your tounge in cheek humor. A cork on the fork is a great idea!
Thanks, Sheila – I can’t claim the cork thing – that one was actually Steve Martin in a movie about con artists.