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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The Poison Miracle

It does exist.  AND I WAS AWAKE FOR NEARLY FORTY EIGHT HOURS AS LIVING PROOF.  Its name is Solumedrol and it is a steroid. 

 

The Miracle Part:  I have been virtually incapacitated since I got out of the hospital before Christmas.  Walking was agony. The soles of my feet have been on fire due to neuropathy.  Having anything press against them, even brush against them, was torturous.  My legs were too weak to swing up onto my bed anymore, so what little I slept was either in a recliner or sitting on the side of the bed, leaning against a pile of pillows.  Because it hurt so much to take even a few steps, I could not sew at the sewing machine.  Or get to the bathroom promptly.  I have been getting progressively shorter of breath.  Even though I am using the ventilator, I am gasping for breath with the least exertion. Getting to the kitchen to make so much as a cup of tea brought me to tears because it was just so darn hard. As a matter of fact, that is practically all I did, sit and weep in spurts as I brooded over everything and anything.  I was frantic and terrified about having metastasized cancer.  I sobbed over the children I miss so much and prayed desperately I could make things right again.  I don’t like television, and couldn’t focus anyway, so I didn’t watch it.  I couldn’t concentrate on reading.  Wondering how long I even have left, I just saw a lifetime of this humiliating  suffering ahead of me, knowing despite what some people believe, I am neither brave nor dignified.

 

It finally occurred to me to call the doctor and ask for some help.  Thursday I started a course of intravenous Solumedrol at approximately 3 p.m.  By 4:30 Friday morning, I had significantly less pain on walking.  I was already a little less short of breath.  My feet were not burning as much.  I did spend the night in the recliner in the sunroom (even though I didn’t sleep), but I was relatively comfortable for the first time in months.  I watched two British TV series (Broadchurch and Collision, both fantastic) and actually was able to concentrate.  I even made a cup of tea without crying.  This won’t last forever, relapses are inevitable, but steroids truly are a miracle for now.

 

The Poison Part: Steroids affect every part of your body, just like MS, only in different ways.  They cause weight gain and salt retention.  (Although I am the only person in existence who could develop a wasting disease and not actually waste).  It causes increased blood sugar.  A higher likelihood for infection.  Lowered immunity.   Hair loss.  Mood disorders.  Skin problems.  Increased blood pressure.  Weakened bones.  Kidney problems.  INSOMNIA.  Is that enough?  Ironically, I don’t get a common side effect that I am prone to when I am not on steroids: depression.  Perhaps it is simply relief, or maybe I am going nuttier than usual, but I am positively giddy with happiness right now.

 

Belated Holiday Update

Christmas was lovely, thanks to my daughter, who, despite being eight months pregnant, made it a peaceful, blessed holiday.  She decorated the house beautifully and we had a fun Christmas morning with Maddy.  The only pall over the season was the absence of my other three children.  I miss them so much sometimes I literally cannot breathe.  Just talking about them or looking at their pictures, those beautiful, precious faces that I love so much, makes me cry.  I lived for them.  Without them I often feel I have nothing left to live for.  I try to force myself to remember to focus on what I do have, my God, my daughter, the two grandchildren I know, my fifth grandchild due any minute, my friends and loved ones.  They are my blessings.  I must be grateful for them.  I am grateful for them. But I am truly bereft at what I am missing.

 

Computer Issues

Because I sleep so poorly and because I am on this wild cacophony of medications, I am notorious for spontaneously falling asleep.  I fall asleep talking on the phone or in person, it makes no difference, and there is usually no warning.  At least twice I have conked out on my dear friend Robin, who is a perfectly interesting and entertaining companion.  But to my humiliation and regret, I have managed to lose consciousness despite her many charms.   She has let herself out.

The worst part of this is falling asleep with a cup of something in my hand, whereupon I will wake up bathed in the substance.  This is not fun.  Thank goodness I have not had a boiling cup of tea in my hands, but I have had many a tepid one.

Not too long ago I dozed off holding a small cup of ice cream.  It melted and seeped under some of the keys on the left side of my laptop.  When I did finally wake up, the keys were sticky, but functional.  After two weeks of this I got a brilliant idea.  The ice cream didn’t hurt the laptop, but the stickiness was irritating.  So, I thought I would try a few drops of water to wash away the ice cream.  Yes, that is correct, I, the product of approximately 22 years of education, decided to wash out my laptop with actual water.   

It took me roughly 30 seconds to completely destroy it.

I tried blowing on the keys to dry them (I have a lot of hot air, as anyone who reads this blog is aware).  I tried the hair dryer.  I tried the ever popular shake-it-real-hard and its cohort, bang-on-it.  Finally I admitted defeat.  Mary Kate took it to the Geek Squad at Best Buy, but they couldn’t salvage it either.  I had to get a new lap top, although I did get a bargain and the Geeks transferred my hard drive to the new one.  But something must have traveled with the old files, as I am having tough time with the new computer.  I cannot access my e-mail, Foxfire or Facebook.  I am working on cleaning it up, but it is taking long time.  Lucky thing time is one thing I have plenty of right now.









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