10. Accessibility problems in general, bathrooms in particular.
9. MS costs too damn much money. Most years I spend enough out of pocket money on medical expenses to exceed the 7.5% of AGI required to claim medical expenses as a tax deduction, even after insurance payments are taken into account.
8. Because this is a progressive disease, sometimes I don’t know what it is I can’t do until all of a sudden I can’t do it anymore. I spend a lot of times on the sidelines watching people take part in fun activities.
7. I miss all the good things that come with working, including income; sense of accomplishment; sense of being engaged in worthy endeavors; spending time with customers, vendors, and coworkers who are some of the nicest people I know.
6. It’s hard to stay healthy and maintain good body weight when I’m so inactive.
5. I miss outdoor activities like snowmobiling, ATV riding, camping, and actually walking in the woods when I hunt (I still hunt from my wheelchair). No thanks, not interested in handicapped skiing.
4. I am completely reliant on technology. If a disaster struck (nuclear war, asteroid smashes into the Earth, Yankees win another World Series) how would I survive?
3. I hesitate to talk about things in the distant future, because the future is so fuzzy for me. When others talk about their long term hopes and dreams, I don’t participate in the discussion.
2. So many people- my wife, my kids, many others- need to go out of their way to help me. I know they don’t mind, but I’m bothered that I must ask them to.
And the number 1 reason I hate my brand of MS is…
1. No known cause, no disease modifying treatment, no cure.
Let me be perfectly clear about this- MS sucks! But my life has changed so much due to MS, and some of that change has been for the better. It's been a one step forward, ten steps back process. Here are some of the steps forward:
10. I have time to keep up this blog.
9. I’ve met so many wonderful people I would have never otherwise met: people with MS, medical professionals, people who just care.
8. Lifetime, complementary hunting license and state-wide doe permit.
7. I can now justify the “3 movies at a time” option at Netflix.
6. Wheelchair accessible tickets for Red Sox, Patriots, and Celtics are so much easier to get than normal tickets.
5. I physically cannot clean a bathroom, rake leaves, or vacuum the house- three things I hated to do anyway. Please, do not forward amazing new discoveries that will allow me to do any of these things again.
4. I’ve become a better person in several ways. I’ve had to adopt Zen perspectives like “living for the moment” and “mindfulness” that I should have adopted anyway, but probably wouldn’t have if not for MS. I keep things in perspective better now. I don’t sweat the small stuff as much.
3. I get preferential treatment wherever there are long lines: amusement parks, museums, boarding airplanes, etc.
2. I’m out of the corporate rat race. I run a lot of “if I had it to do over again” career scenarios in my head. If I had a do-over, I doubt I would choose the corporate life again. I missed out on my calling, whatever that was.
And the number 1 silver lining of having MS is…
1. Handicapped parking. Enough said?
For those of you with MS, what are your top reasons to hate MS, and what are your silver linings?
Ten Reasons Why I Hate MS:
ReplyDelete10. Persistent pain, discomfort and crushing fatigue making unassisted walking almost impossible.
9. Long to physically approach the world
effortlessly and with ease.
8. Can no longer go for walks, dance or do aerobics.
7. Miss going to work everyday and the mostly positive interactions I had with my customers and co-workers.
6. Hate the additional baggage of equipment and walking aids; unable to wear cute heels.
5. Hate that family feels so bad for me.
4. Unable to travel as much as I'd like and probably will never see the places I dreamed I would one day.
3. Have never gone to the beach or swimming with my son.
2. Fear for my own safety, i.e., fear of falling.
1. No effective therapy, treatment or cure; unpredictable course.
My Silver Linings:
10. People are always so eager to be of help, even when I don't ask for it.
9. Perks, such as going to the front of line at various venues.
8. Can pursue hours of reading.
7. MS reminds me now more than ever before to count my blessings daily and not my troubles.
6. MS reminds me that I can turn this curse into a blessing by my acts of kindness and service to others however small.
5. MS has afforded me time in my day to meet and interact with so many wonderful people who never cease to amaze and inspire me.
4. The following sums up my MS silver lining: Life is hard, life is easy, life is sad, life is happy, life hurts, life feels good, and no matter what happens - life is worth living.
Oh this is delightful! =)
ReplyDeleteCentenniel,
ReplyDeleteMy favorite hates of yours are #9 and #4. My favorite silver linings of yours are #7 and #4. Good stuff!
Have Myelin,
Thanks for stopping by. Glad you like.
my "hates," although i hate that word, are pretty much the same as yours. my likes are #9,6,3,1.
ReplyDelete