Yes, I’m living in reality….honest

Today I received a somewhat “disturbing” email from a gentleman who viewed my blog.  Some 700 people have viewed my postings in the last week or so (thanks to everyone).  Most haven’t commented, but those who have (either publicly on the blog itself or via private emails) have been supportive, positive and enlightening.  This writer was concerned that I’m not living in reality — that I’m in deep denial about my situation and the seriousness of this non-curable, life-altering disease. “They’re LESIONS, not silly sparkles, my dear….”  He didn’t understand how I could be posting such positive, and what he felt were almost inappropriately humorous, updates and symptom notes, when only a little over a week ago I was handed what he referred to as “what had to be the worst news of your life.” 

He suggested that I’m deep in denial, and to better help myself, I should really give myself a dose of reality — and quickly.I’m not posting his exact email, because quite frankly, it’s just too darn negative for my blog, my world, or your world. It’s been deleted and even deleted from my deleted items.  It’s gone forever.  I do appreciate his comments though and I thank him for sharing them.  If he’s feeling this way, perhaps there are others feeling the same.  So, here goes my one, long paragraph demonstrating that “I GET IT.” 

I know full well the seven stages of grief.  I rapidly passed through shock and disbelief between Monday and Wednesday of last week.  I tossed in a healthy dose of denial, too, along the way.  Yes, I came right out and told everyone — family, friends, doctors — that I did not, did not have M.S. (In fact, I think I’ve been in denial for quite awhile.  I’ve known something hasn’t been quite right with my health for a lot longer than the symptomatic period). I bargained before I denied.  In fact, I promised my husband that as long as it wasn’t a terminal brain tumor, I’d handle anything.  I own that bargain.  I’ve begged for my eyesight back, bargaining that I can handle the numbness, the fatigue, the constant pain I’ve been in for a week, just as long as I can still see enough to drive, take care of myself, and remain fully independent. I have prayed for strength and keep my fingers crossed that I have suffered no long-term cognitive dysfunction. I have been suffering great guilt through the process, probably more than any other emotion.  My husband didn’t sign up for this.  Three days before our wedding, some ten-odd years ago, I walked in and told him I had cancer.  Last week, I told him I have M.S.  He deserves a fun, normal, Steelers-filled life with bowling and friends and Hornitos in Cancun, not one with a sickly, dependent wife.  I’ve been dependent on my mother to drive me to work every day, and even to take me to do the simplest of tasks — grocery shopping.  She’s enjoying the time with me, but nonetheless, I feel terrible for disrupting her life and routine.  I’ve disturbed the quiet and fun, worry-free lives of my teenagers.  And, my pup, well, he’s still not sure how his life will be affected by all this.  He just knows that I haven’t been the same and I can tell he misses me terribly.  I feel guilty.  Very guilty.  I’m still doing my job and doing it damn-well, but my staff has had a hell of a year.  I’ve done nothing but add to their personal life and work stresses with my current situation.  If I apologize to one more person, I’m certain someone is going to start crafting a noose for my neck.   Ok, I’m mad.  Furious.  Really, really angry.  Not that I got stuck with M.S., but because it’s messing up my really, overly planned, overly scheduled, overly dreamt-out life.  It stinks.  I’m grumpy and I’ve never tried so hard in my life to be aware of my negative mood when I’m around other people.  I’m so mad I cry at the drop of a hat.  I wake up in the morning (after I do the toe-wiggling) and cry briefly.  I threw something in the sink tonight after I dropped it and spilled it all over the floor.  I’m furious.  I suppose the tears could constitute some symptoms of depression, but after suffering from serious anxiety issues for the last decade (or what we thought were anxiety issues but may have just been the M.S.), I’m certain I’m not clinical.   And, that brings me to acceptance and hope.  I don’t think I’ll truly hit acceptance for quite some time.  I told one of my oldest friends in the world, Julie DeMarco, tonight that I “accept” that I have M.S.  But, I don’t think I’ll reach “acceptance” until I go through a period of lots of Sunshine days, hit the Moonlight again, and then come out again on the other side.   Acceptance – true acceptance — takes time.  I’m filled with great hope though.  That hope seems to mitigate the rest of the stages for me much more easily.  I have hope for a cure someday.  I have hope that I have the opportunity to take medications that will help me live a normal life.  Ten years ago that would have been different.  I have hope that I can help others with the disease work their way through the stages of grief and into their own level of acceptance.  I have hope for a greater world, free of ALL diseases, not just M.S.

With that said, just because an individual chooses to handle her diagnosis and prognosis with some humor and a positive outlook, doesn’t mean she doesn’t recognize the gravity of the situation.  Just because someone chooses to dwell in the negativity of their own life crises doesn’t mean that person doesn’t also have happiness and the ability to find and use laughter in their own lives. 

When I was first diagnosed, I jumped into all the chat rooms out there.  I looked for postings from the newly diagnosed, from the scared, from the patients trying to figure out the best treatment approach for them.  So, so many postings – the majority – are negative.   I’ve found maybe one or two personal web sites for M.S. Survivors that are shrouded in positive energy.  They are few and far between.  If you have one that’s positive, send me your link and I’ll gladly post it here in my Blogroll.

So, for the gent who wrote to me this morning, this is why I choose to laugh.  This is why I choose to be positive.  This is why I choose to vent my seven stages of grief more privately and intimately with the very, few folks who are tightly connected with me.  The world has enough negativity, fear, and consummate worry.  You can rest easy tonight, Sir that I am living in reality, will likely shed a brief tear tomorrow morning when I rise, will wiggle my toes and then hop in the car to go to my first visit with my neurologist.   I’m prepared for whatever plan we need to put in place.   I’ll likely crack a few jokes when I see her and I’ll know she’s a great doctor when she responds with a giant belly-laugh (pun intended – she’s very pregnant)!