Lately, I have given a great deal of thought to my former life, before ALS.  So many little, seemingly insignificant parts of my life that I assumed would be mine forever.  The losses are adding up and I am mourning losing them.  The amount of time that this disease has taken over what I think about distresses me.  It has gone from fear to concern about how much longer I can hold on.

The vibrant energy that was always mine;  endless energy which I always tried to put to productive use.  Today, I am so weak, it takes so much focus to go from my chair to the kitchen and back again.  I am in disbelief as the energy fades, in tiny but cumulative chunks. That endless energy rated high on my quality of life scale.

Yesterday I toodled around on my scooter for about 45 delicious minutes.  I saw children playing, hair flying in the breeze as they ran delightedly through the park.  I heard the birds gayly singing all around me.  And I encountered many people enjoying their bikes while I past them in the scooter.  I remembered 25 years of cycling and how it enriched my life.  But I am grateful, even now, that I have a means to enjoy the wonders of springtime again, even though my method of transportation has been altered.

I mourn the loss of the quality time I was able to spend with Mollie.  Even a few weeks ago, I was able to throw the ball for her and reward her with her favorite snack when she brought it back.  Today, I barely have the energy to walk for 10 minutes, and Chris is concerned that I wouldn’t have the strength to hold tightly if she came upon a coyote.  Yesterday there were two in our yard!

And so, Mollie leans her head longingly on the window sill, looking outside.  She is a very smart dog and knows very well how to yank my chain.  I’m sure she wonders why it doesn’t work anymore.   Chris does so much to give her adequate exercise, but I miss those fun times we had every single day.

The only food I am eating these days is applesauce and some ice cream.  I miss spicy Mexican food, and lobster, fresh vegetables, especially salad with rich balsamic vinegar, cottage cheese and slivered almonds.

The fun times with my husband at fine restaurants, and giddy conversations with women, wine and good French roast coffee.

I miss the mall!  Yes, I do!  Going into the stores and seeing all the cute new styles for spring and summer.  Selecting a few things to add to my lovely wardrobe.  Now, I search for more silk pajamas online because it makes turning over in bed so much easier.

My neck is becoming weaker as well.  It is very difficult to keep my head up without leaning on the back of a chair.  There is no in-between.  Head flops forward, all the way down or sits upright on my shoulders.  When I am typing, and holding it up for very long, I must rest because the pain is growing in my upper back.

I know this is a real “downer” post.  I sincerely apologize for speaking this negative truth.  But it is so real and I cannot help wondering how much longer I will be able to write in this blog.  I can assure you, dear reader, I will continue to give it my all, even if I have to do it in smaller segments.  It is that important to me.

And now for the parts of my life that have grown.  I am acutely aware of every single negative thought and word that I express, in criticism of another person.  There is a very efficient warning bell that goes off prior to my putting the thought into  words on my iPad to share.  Most of the time, I stop, think again and let it pass.  But I must confess, I sometimes do it anyway.  It happens less and less and I am reminded of all that we share as human beings.  I know that I am in no position to judge another for I am guilty of the same transgressions that I am criticizing!

I have acquired  a degree of patience.  I am seldom in a hurry.  I move slowly and notice everything.  I ask myself, “What is important?”

My illness has evoked in my husband a tenderness that I had never seen.  I never doubted his capacity for loving, but I could not have imagined how he would give 200% of himself to supporting me in every way.  He is the most amazing gift.  I cannot help but think of all the lonely people who use online matchmaking services, hoping and praying yet doubting that they will find love again.  I want everyone to know it is indeed possible to meet the love of your life in your fifties, just as I did.

I have learned so much over my lifetime and much of it has to do with how to be successful in relationship with a significant other.  After the luster fades and real life sets in, it is so important to look for goodness; catch your partner doing things that make you happy and let them know how much you appreciate them.  Instead of hanging on to little slights or disappointments, share them in the kindest of ways and move on.  Be tender.  Be thoughtful.  Don’t wait for your partner to do what you want them to do!  Be in love and don’t hold back.  Trust me, they will respond and you will be glad.  All too often, we allow old hurts from previous relationships to color our current ones in a negative light.  This is very common and a huge mistake.

I watch Chris now as he helps me every single day in innumerable ways, without being asked.  He gives of himself generously, knowing that our days together are numbered.  He tells me I look pretty, and he means it.  He gives and gives and gives and I realize how lucky I am.  We both laugh now when I tell people it took me three years to convince him to marry me.  And we are both glad that he finally gave in to my urging.  We are happy together.  We wish we could grow old together……

And so, dear readers, as I acknowledge the countless losses that I have had I must remember what I have found.  I share this with you in hopes that you may look at all the gifts you have and be in appreciation.  Pay attention to what you think about and the tallies you make.  I pray that you track all of the blessings, abilities, and kindness, and ignore the disappointments.  Love generously, your own life and the people within your sphere of influence.  Nothing is as important as this.  God bless you.