Wanted: Extended Life, with a Side of Laughter

I started my blog in 2008 with great trepidation.  Doing research on the pit falls of writing online, I came across a very funny essay entitled “How to Dissuade Yourself from Writing a Blog”.  It pretty much assured you that what you would write would be utter drek that no one would ever read.  Or, if through some miracle they actually found your blog, they would laugh themselves sick at your ineptitude.  Naturally, I believed I would be an exception to these rules.  So I took the plunge.

At first I was focused on losing weight for my son’s upcoming wedding.  So I wrote about swimming at the local health club and what I ate for breakfast.  Riveting stuff, right?  The words were stilted and formal, dull as dishwater.  Painful to read now, especially since because of immobility and medications I have gained about another zillion pounds.  Then I fell and broke my shoulder.  It was the kind of injury that simply consumes you.  So that is what I started writing about.  The craziness of the fall, the insanity of trying to obtain the care I needed, it all just poured out.  And it poured out in my own way, almost a sort of stream of consciousness.  My readership jumped by over 100.  A friend once gave me the most incredible, touching compliment.  We hadn’t seen each other in ages.  After chatting for the first time in over a year, as we said goodbye I said to her “It has been so good to hear your voice!”  She replied “I hear yours every time I read your blog.”   I could not have asked for higher praise and affirmation.

I began to think in Blogese.  Everything was potential fodder for my posts.   I was lucky enough to be able to attend two separate blogging conferences, great opportunities to network and keep up enthusiasm.  Always on the lookout for potential content, I composed posts in my head all the time.   My motto was one that I had seen on a novelty t-shirt:  “I am SO bogging this!”  Although it was never, ever my intention to exact revenge on people who had treated me poorly.  Well, except perhaps when I was laid off by those incompetent nitwits (long story, read about it here ).   Writing about negative experiences in my own life could possibly be perceived as resentful and/or vengeful, but, again, it was not my plan to deliberately hurt anyone.  The stories of our lives reflect ups but also downs.  Unfortunately, writing about painful incidences can have the appearance of good guy (me) vs. bad guy (them).  I have tried very hard to take ownership for my actions and life choices, to acknowledge when I have been an ass or totally wrong.  I have also tried to be fair to those who have hurt me, working very hard to present a balanced picture, as no one is purely good or bad.  And I have worked hard at understanding and presenting what I have perceived as their motivation. However, for the most part I tried to put a lighthearted spin on my incredibly eventful life, as there are few things I enjoy more than making people laugh.   And while I love to laugh, I didn’t realize quite the impact I had made in that department.

My darling friend Christine recently hosted a small, informal get together to honor my 60^th birthday.  She put a journal on the table and asked people to write comments in it, either a note on how we had met or a fond memory.  As I read through this treasure afterwards, one thing jumped out at me.  Nearly every single person stated one thing they loved about me was how I made them laugh.   I was amazed and touched.   And saddened.  Because I simply don’t feel very funny anymore. Having been virtually housebound and isolated for the past two years, I find it harder and harder to hold a lucid conversation, never mind be funny.  It was hard to laugh at MS.  It is even harder to laugh at metastatic cancer.   Being aware that MS had the very real potential of significantly shortening my life was painful enough.  But having cancer that cannot be cured is devastating. 

I was stunned to note I have written fewer than ten posts this year, opposed to an average of over 50 a year in the past.   But writing is what I am meant to do, a need rather than a want.  Despite some recent criticism by people I love, I have to keep on writing.  Not only is it good for me as an expression of what I am, I get feedback from people, publicly and privately, who tell me how much my words mean to them.  I have to believe that is one of the reasons I am here, one of the ways I can make a difference.   

I am trying hard to live my remaining life to the fullest.  I pray constantly for dignity, courage and, if possible, duration.  I pray for discernment of what meaning my life was intended to take.  I have finally obtained my new power wheelchair.  Now I have to figure out how to get out more.  I want to volunteer where I can.  I want to create a charitable foundation to provide opportunities for people who have encountered crises, to help them over humps the way so many have helped me.   I want to give back, to have a positive impact on this world.  And I want, no, I need, laughter to be part of my life again.

 









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Promises, Promises

Wow, I have never gone so long without writing a blog post.  Over two months!
 

Writing this blog is probably one of the most rewarding, gratifying, fun things I have ever experienced.  It has given me a chance to do the things I love the most: write, make people laugh, reflect on subjects that seem interesting or current, brag about my adored children and grandchildren.   I have received feedback, not just in comments, but in e-mails, from strangers telling me how much something I have written has touched them, encouraged them and/or inspired them.  Unfortunately, I feel I have been letting myself down in not keeping the blog current. I suppose part of that lapse is because things have changed so drastically since I started writing it.  Although it also could be because I have been so sick.  But surely I should be capable of at least a few words?  I am really disappointed in myself.

I had promised myself I would write certain number of posts per week, or even as few as one per month.  I’ve tried giving blog posts catchy titles, to remind me to keep on schedule, like Photo Friday.  This one would be a no brainer, I thought.  I have a zillion snaps I can tell stories about.  And it had a built in reminder.  Who could forget it was Friday?  Well, me for starters.  “No brainer” seemed to be the operative phrase here.

Then I had the brilliant idea of combining a prayer with a clip of something funny.  See afore mentioned no brain.  Anyone else would have realized, practically immediately, there just aren’t that many amusing prayer subjects out there.  At least not ones that would lend themselves to a laugh-out-loud video clip.

I have sadly neglected my other two blogs as well.  The one about books should be the easiest thing in the world to write, as it is a subject I can go on about for hours.  My MS Renegade blog has also been left flapping in the breeze.  There is so much to say about living with MS, so much I could share with others that might help even a little, but I keep breaking my promises.

However, as we all know, promises break all the time, don’t they?

Sunday, April 17, 1977, I became a mother for the first time.  I promised myself I would be the best mother ever.  I read every book I could get my hands on.  I embraced new age theory, breastfeeding, the family bed, marsupial mothering.  The counter-promise was apparently an emotionally fulfilled child, the most important thing, of course.  But for me, of a peer group that was fraught with challenges between the generations, the other exciting assurance was true and deep friendship with my children as they grew.

My darling children, circa 1990

Best intentions notwithstanding, being human, I have not been a perfect parent.  I did not come close to the lofty goals I set for myself, although I do not believe I was all that bad.  I had enormous fun with my children, was graced with tremendous joy in watching them grow as people and mature into adults that I was so proud of, people I was so happy to spend time with.  We had fun together.  We traveled together, got together and played board games, made each other laugh.  And despite my failings, I thought we were still friends.

But those promises have shattered as well, with agonizing estrangement from two of my beloved children. 

As I have written before, the year I turned fifty my children and my sister threw me a spectacularly affectionate and loving birthday party.  It was a blast.  They planned it as a surprise and later told hilarious stories of how much fun they had organizing it.  I was thrilled and grateful that they had taken so much trouble to make me happy.  But, taking things completely for granted, I had stupidly assumed these relationships would simply continue to flourish and thrive.  These were literally my best friends.  They publicly announced their love and admiration for me at the party.  But what changed?   Were they making it up?  Had they always despised me but just kept it to themselves?  The promise of loving each other forever seemed to be there that wonderful day, but appears to have evaporated into thin air.  The void this has left is unspeakably painful and literally causes me to howl with grief at times.   I have lost so much already, to lose them on top of everything is unbearable. 

Thirty seven years of memories as a mother flash through my brain, all organized around my overpowering love for my children.  And underneath all I can see are all the things I have done wrong, despite my best intentions, despite my promises.

I will continue to try to write my blog despite being broken hearted and miserably sick.  While I was given a blissful reprieve by the steroids, as I predicted, my symptoms have returned with a vengeance. The cancer has spread yet again and a trial of chemo started 10 days ago had to be stopped when the side effects, particularly shortness of breath, became untenable. Without chemo, I do not have a great deal of time left.  My doctor ordered a hospice evaluation this week.  By continuing to write, I want to share successes and achievements.  I want to laugh.  I want to write commentary on issues that matter to me.  I want to live until the end.

I am surrounded by loving, fun, supportive friends who cheer me on and celebrate my writing.  I cling to the premise that there must be a reason for this cordon of support, this core of loyalty and affection.   But this is not easy.  The individuals who are so bitterly angry with me, family members that I loved and trusted, assure me that my wonderful friends are kind to me only because they don’t know what I truly am: an evil, selfish, manipulative liar.  

For someone like me, with inherent Low Self Esteem, it can be easy to buy into such a pronouncement.  After all, it comes from people who have known me their entire lives, people who profess to know me better than anyone on the planet.  So they can make such a proclamation, right?

But here’s the thing…I cannot accept that.  While my heart is utterly shattered by the estrangement from my children, I have to believe that God surrounded me with the love of my friends, my remaining children and my grandchildren, as a comfort and a gift.  His love is a promise I have to believe in.  It is the only thing that can keep me going.  I will pray for the few who harbor such animosity towards me, that they might find peace and tolerance and maybe even reconciliation.  But I will rejoice in those hundreds who celebrate me and who share joy and generosity of spirit. 

  

I will be honest.  It is devastating having cancer, MS and very few treatment options.  But missing my children is worse than all those disasters put together and has rendered me a sniveling, weeping, sloppy mess. As part of an effort to stay calm and strong, I am trying to meditate and pray.  According to the medieval mystic Julian of Norwich, this assurance, this promise, comes directly from God’s mouth:

"All shall be well, and all shall be well, and all manner of things shall be well."

He promises!  And when my knees are buckling with grief and fear, that promise is holding me up.  Thank you, Lord. 

Amen.

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Four Years!

There has been some serious Blog Neglect going on here.   I have to do something about that.

I missed my own fourth blogiversary, which was in February. Four years of writing this blog. Four years of no weight loss. Several occurrences of royally pissing people off. Primarily family members. Who now no longer speak to me.

 But four years of meeting the MOST marvelous people! And incredible, wonderful feedback on my writing. So, even though the title I originally thought was so perfect now makes me gag with embarrassment, and even though I can count on one hand the number of family members who still speak to me, writing this blog has been one of the most rewarding things I have ever done.

I thought it would be easy for me fun to repost some of my early work. Here is one from March of 2008, complete with Bleak Photo To Make a Point In Case You Didn't Get It:

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In addition to being old and fat, I have MS. Most of my brain is in complete denial about this. Because it is ridiculous to think of myself, a normal, ordinary person with here-to-fore peasant-like good health, as having a serious chronic disease. 

Every time I go to the neurologist, I futilely ask if perhaps there has been some mistake. But he doesn’t mince words: “Oh, you definitely have MS” he says cheerfully in his cute English accent. 

There is nothing good about having MS. Absolutely nothing. Some people say, “I have MS, but MS doesn’t have me”. This is rationalization that borders on the delusional. The MS tentacles insinuate themselves into every aspect of your life: mobility, thinking, elimination, stamina, sexuality, everything. When you have MS, your life of doing things without a thought is over. 

Pain is part of the MS package. Pain from damaged nerves that does not respond to conventional analgesics. I have been crippled with neck, back, hip and leg pain for weeks. Nothing was helping. My neurologist just prescribed Neurontin, which is to treat neurogenic pain. I finally began to get some relief. 

But wait, there’s more!! Because what do I find in the drug information about Neurontin? It causes WEIGHT GAIN. That is what every info sheet says: weight gain. Weight gain, weight gain, WEIGHT GAIN AND WE DO MEAN YOU MARIE YOU BIG FAT PIG!!!!!! 

And according to those who know, we’re not just talking a few pounds. We’re talking up to 30 pounds!

God help me, I would rather be in pain than continue to be fat. How sick is that? But I will give the med a try and see what happens.

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Well, I did give Neurontin a try and it helped a little, but not enough to make it worth continuing.  Now this was before I broke my shoulder.  Two years after my fall, a pain super-specialist from Mount Sinai Hospital in New York prescribed a combination of percocet and neurontin every four hours for the chronic pain I had in my arm and shoulder that nothing else would relieve.  So I gave it a try.  It barely touched the pain.  But it did make me high as a kite.  Woo hoo!  And it caused me to gain not thirty, but a whopping 50 pounds.

I quit taking the neurontin before I ended up trapped in my house because I couldn't fit through the doorways.

So I still have the pain.  I still have the fat.  And I am still glad I started this blog!!

Thank you so much, my wonderful readers!!


 

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