Absence Of Knowledge
Reading about last week’s death of Annette Funicello, a long-time sufferer of multiple sclerosis, I uncovered a quote by hear I found to be interesting.
The article stated when Funicello was finally diagnosed, she recalled…”I knew nothing about MS, and you are afraid of the unknown. I plowed into books.”
Thinking about my diagnosis in Sept of ’96 (Who can forget their dx!), I thought of my own stubborn refusal of acceptance.
I couldn’t bear to talk about MS. Much less read about it—even though my head was swirling with thoughts of whys & what ifs every moment of every day. Why would anyone want to learn more about their new, medical label? Are you kidding me? Hell, the ink was still wet on my MS diploma!
Everyone told me learning more would help me to cope. I shook my bulbous head in disagreement. Then, when trying to read about MS, the outcome was always the same….dark, depression, crying and a nose that ran like a Moen faucet.
Someone sent me the book “Multiple Sclerosis A Guide For Families.”
“A Guide For Families?” Who’s family…The Munsters?
This book was so cold & clinical it made a Stephen King novel seem lighter than “Diary Of A Wimpy Kid!”
I’ve owned this book for 16 years now and STILL haven’t read the whole thing.
Maybe the approach I took to my multiple sclerosis was all wrong from day one. Maybe one should accept their DX…learn, read & study and smile like a happy ending to an episode of “Leave It To Beaver.”
Oh great. It’s “The Funny Meter.”
Yeah, yeah I know. It’s not a Yuk-A-Thon. Sometimes life isn’t all that comical.
Hey Funny Meter, why don’t you go watch “Chelsea Lately.” Or, “Sean Hannity.” That oughta keep you busy!
So how about YOU.
How did you handle your MS diagnosis all those years ago?
Did you throw yourself into further study like Ms. Funicello? Or did you deny your MS much as I did?
Looking back, do you believe you made the best choice? Or would you do things differently?
I’d be interested to hear your side as we all have a different approach to the same problem.
Till next time.
7 Replies to “Absence Of Knowledge”
I remember in 1995, when I was told I had MS, the first 2 people I thought of were Annette Funicello and Richard Pryor, and telling the doctor I didn’t want to end up in a wheelchair. He told me “I would walk to my grave”.(I stopped seeing that doctor in 2003). Even though I started on disease modifying drugs, in 2009, after a major exaserbation, I can no longer move my legs,and I AM in a wheelchair.
Up until about a year ago, I was compulsive, read everything about MS, never missed a support group, or an MS related program. I finally came to realize, everyone is different, what is helping others, doesn’t help me, and I was getting more depressed, that while others had things working in their favor, my miracle was just not gonna happen. As a matter of fact, last week, I went to the doctor for the first time in 17 years, without “my list”. I just told the doctor, the bottom line is that “I am tired and weak, to the point I can’t function”. I feel I have the best doctors for MS, and have to trust that they are doing the best for my personnel situation, and to stop driving myself crazy, worrying about why “this doesn’t work for me”. Take that Montel!…………….
My reaction was, strangely, relief. You’ve been to my blog, so you know I’m a nutty hypochondriac. During the testing leading up to my diagnosis, I was a panicky wreck. As I usually do, I assumed I had something fatal and that’d I’d soon die a horrible death. So when the neuro told me, “It’s MS,” I was a *teeny* bit relieved. I didn’t know anything about the disease, but I knew I didn’t have a giant brain-eating tumor (YET). The only person I knew at the time who had MS wasn’t faring too well, so once I started absorbing the diagnosis, I was sad and scared, and did a fair amount of reading about the disease. I’ve been lucky to have a great couple of neurologists and other doctors who help keep me sane. And I’m so happy to have made some really cool new MS friends in the blogosphere (as well as you)(just kidding!! Trying to raise the Funny Meter). Getting involved in the National MS Society’s Challenge Walks has been another fantastic outlet.
Say, can I borrow that book? It looks aMAzing. Can’t believe you haven’t read it!!
Well, I was only Dxed 4 years ago. I researched MS like crazy, read medical journals, saw many doctors, researched more, joined an MS group. Then I went into a bit of a denial period, until I could deny no more. Then the cycle started all over again. That lasted for a couple of years, Now, I “roll with it”, deny when I need to, smile and laugh lots, cry and whine some. I think I have accepted the MS now. For me, acceptance simply means acknowledging it and getting on with life the best I can. I try to live in the moment, rarely looking back and not looking too far ahead.
I threw myself into the books… and videos.. and conferences… and all the other stuff out there. I had to know.
Looking back… I think I did the right thing. I wanted to know, no, I needed to know. I am one of those who likes to plan for the worst and hope for the best. I must admit though, the hope part of that equation is a bit lacking in the MS arena.
I find that lately I’ve been in denial more than I was in the beginning. I get to feeling pretty okay and act like there’s nothing wrong. I bet that will catch up to me one day soon….
I think I have been in denial, still…..I was young so I had that invincible thing going on….also…..besides denial. Seems I need to work on it but I get so tired of MS.
I would be different if I had it to do over but I do not know how I would
I tried to read. That would last about 30 seconds before I would begin crying and feeling worse moodwise than before. So I ditched the research. By letting my docs tell me about new treatments/meds, I can concentrate on keeping my mind intact (That can be rather difficult at times!).
When my sister was diagnosed with MS eight years ago, I ran out and bought her a ton of books so she could read all about it and be fully aware of what it would mean in her life. I grew incredibly annoyed as I suspected she never actually read them- how rude! When I was diagnosed, she promptly brought them to me to read and become fully aware of what MS would mean in my life. I will try to read them and still have them. Somewhere. I think…..