I know better than to put a photo in this post of a lobster dinner...that's often what folks think of when they imagine Maine. Rocky coast lines, clam chowder, and lobster.
But not my dear friend, Joyce/Harkoo, who is today's featured blogger on BrainCheese! As a staunch animal rights activist and artist, Joyce may LIVE in Maine, but would never approve of a lobster boil (you don't, do you Joyce?!?...thought I should maybe clarify before assuming!).
Joyce has been reading the "Cheese" almost since I began writing it (which seems like forever even in dog years) and has been dealing with MS for a number of years...so long, she could be considered a "guest consultant" on many topics.
So let me not delay her response to "I'm sick of talking about me...let's talk about..." posted 10/24/06 (do I really need to keep referencing this post for the unlikely prospect of newbies?...seriously now, just play along if you don't follow):
1. How old were you, where were you, what time of year was it, and what were you wearing when you "received" the lovely diagnosis of Multiple Sclerosis? (Friends of MS--twist it for when you were told about your person's MS...don't forget to tell us what you were wearing, though.)
1) I was 32 years old when I was hospitalized with a paralyzed left leg in a packed neuro unit during the hottest summer Vermont had experienced for years--I had previously had that paralyzed leg happen when I was 24 and 28 and it always cleared up, but it was the eye symptoms that got me admitted. I had just changed from my johnny into a light, summer nightgown when the team of residents came into the room to tell me my diagnosis. They were learning how to give a diagnosis to a patient so I was very kind and praised them for doing a good job at telling me. It was arelief they had ruled out a brain tumor. And not a surprise as my mom had MS already. I later became good friends with 2 others who were diagnosed with ms that same week in the same unit. Always thought the heat was the precipitating factor.
2. Who was the first person you told about your MS and what was their reaction? (Friends of MS--whadaya think, what went through your mind when you were told?)
2) My husband was working when I learned my fate so I called my parents who lived in Maine. My father, who is a physician, answered the phone. When I told him my dx, he said, " No you don't have that! They are wrong! I have always thought you have psychiatric problems and that is why I have always thought you shouldn't be doing that psychiatric nurse work you do--it is too stressful and you should be enjoying yourself more, at home doing your artwork. That leg paralysis stuff is more a conversion hysteria thing going on--we will get you to a good psychiatrist and you will be fine. When my mother found out, she just cried and said she was sorry. Being off to a good start, it is significant I tell you my husband's response when he got to the hospital. He said NOTHING and just looked at me.
3. What's your greatest fear and/or secret about your MS and what HASN'T come true or manifested from your MS that you thought would happen or affect you? (Friends of MS--take liberty with your prose here...you can change the NAME of your MSer and spill the beans on THEIR crap! If you change the name and call ita "seminar" in my profession, you're not breaking any confidentiality rules!)
3) I was always afraid of developing eye problems as my mom had problems with her eyes and couldn't read. It has been quite awhile now that I have had this, did fine with a cane, but the stress of marital stuff made it necessary to use a w/c when I go out and learn hand-control driving. Dealing with this is nothing compared to the challenge vision problems would present to living an enjoyable life (I have been an artist).
4. What's your worst symptom(s) or the nagging thing about your MS that just won't leave you alone? (Friends of MS--you are given license here to use the words, "gimp", "weeble", "drunken sailor", "blind as a bat", "crazy as a mad hatter", and any other word(s) considered politically incorrect by the disabled or the MS World.)
4) The nagging problem that is a difficult burden is when I am under a lot of stress, the mind isn't clear and it is difficult to think clearly--or is this aging?! I have heard a term called Brittle referred to our ms brains but I refuse to look it up.
5. Who/What supports you/comforts you in your life and where do you go to find it/them/calm/etc.? (Friends of MS--probably YOU'RE going to be talked about here...take a bow, and then answer the question anyway!)
5) There came a time, my husband took up a new sport --fly fishing! He would take to the Maine woods and lakes for a week at a time to relax. Looks like he was never fishing my friends--he was living with my healthy replacement! I now live with my cats and am never lonely and I like to cuddle with them at night.
6. And last, but not least, what do you still have on your agenda to achieve/finish/reach/summit/climb/accomplish before retiring to that great, golden Club Med in the sky? (Friends of MS--I assume YOU have goals, too...what are they? Do any of these goals relate to your MSer? What are you wearing right now as you read this? Throw us gimps a bone here and humor us!! Ad lib it up!)
6) I want to be around a long time to watch my nieces and nephew grow and develop--have found joy being closer to them now. Am working real hard at dealing with depression issues and cognitive issues to try to get back to doing my artwork--have had a dry spell since my divorce--once I get that kicking in again, I will be content. Joyce
Well, there you have it, folks...straight from the far Eastern corner of our lil' United States! Don't you think the next great "Cheese" idea should be that I get to travel to all of your locations (for free, of course) and interview each of you personally? I've never been to Maine...