K & L = Kisses and Lou Gehrig’s Disease #ALS #SpanksA2Z 18

K = Kissing
L = Lou Gehrig’s Disease (ALS)

It has been almost 6 years since my best friend died of ALS, she was 44 years old and left behind two teenaged children and a wonderfully devoted husband.

We met them at a marriage conference at our church and clicked instantly.  If either of us had been organized, we probably could have had our own comedy routine.  We would turn anything into a laugh fest.  We loved life, loved people, loved kids, loved animals, and most definitely loved our families.

She hid the disease for over a year and she sent me an email that told me what had happened and when she had been diagnosed.  I went to her house the next day to have lunch so we could talk and cry together.

She never locked her door, EVER, so I opened it and yelled that I was there and she said she would be out and to make myself at home.  I waited and waited and waited and waited.  Then this very shaky voice yelled for me to come to her bedroom.   I walked in and found her crying sitting on the floor and she said, “I can’t get up.  I tried, I just can’t get up.  I fell…”   I held her and we just sobbed and sobbed and sobbed.  When I tried to pick her up, she then had to confide in me that she had lost control of her bladder and said, “just throw a blanket over me and let’s eat lunch on the floor.  Let’s have a picnic.”  We ate our Wendy’s lunch on that floor and cried about dashed dreams, how she wouldn’t see her kids get married or even graduate from high school. She would never meet her grandchildren.  How she was afraid of suffocating to death.  She made me promise that her kids would never have to bring her to the bathroom or change her diapers.  She asked me to find a woman for her husband, she was worried that he would be alone and sad.  We shared, cried and laughed until we had tears in our eyes.  It will always be remembered as the saddest and yet the best lunch I have ever had with a friend. 

That was how we started our journey together with ALS and her journey home.  The illness took over quickly for her, which looking back was truly a blessing.  She didn’t drag out for years like Stephen Hawking.  From diagnosis to death it was less than 2 years. 

I “watched” her 4 days a week while the kids were at school and her husband was at work.  We loved sexy, erotica books and books that talked about spanking.  So I would read her the new stories I bought and we would laugh and imagine how we would feel if we were in that situation.  The day we had to bring a hoyer lift into the house to get her into the shower, a day that would have most people crying, she started laughing and said, “When I visualized a sex swing, I never thought I would finally get one this way.”  

The day we came to the conclusion that she couldn’t transfer from a wheelchair to the toilet anymore, I went and bought her diapers.  She turned to me and said, “I wonder if Rick will want to start age play now.”  We fell out laughing.  She turned all situations into something to laugh about.

For people who don’t know, ALS affects the mind as well as the rest of the body.  So at some point, not only do you lose the ability to walk, sit, write, talk, breath, and swallow you also lose some of your brain function.  It affects decision making and mood.  One day she was yelling at her daughter that she couldn’t leave the house because she needed her to bring her to the bathroom and change her.  I remembered my promise.  It was so difficult, one of the most difficult things I had to do.  I told her daughter to leave the house and tried reasoning with my friend.  When her husband came home, I pulled him aside and shared with him the promise I had made with her and what had happened that day.  They started getting home health aides the next day and she was livid.  She yelled at me and ordered me out of her house and I was told to never come back.  It was devastating for all of us.

A month before she died, she turned to her daughter and asked where I was and how come I hadn’t come to visit.  It was truly a blessing.  They immediately called me and said come back, she wants to see you.   She had lost almost all ability to speak at that point and was writing her requests.  She kept saying, with her voice, over and over, “missed you, missed you” and then she would make kissy lips at me.  But she had lost the ability to pucker her lips.  So she would say “mwah”.  That is why I write “mwah” to friends,  it has a special meaning to me and is reserved for people I truly love.   Those last four weeks went by fast and she lost ability daily.  I have never seen anything like it.  She would lose the ability to hold a pen within 6 hours.  Literally one morning she was writing and by evening it was gone. 

I haven’t gone a month without missing her or crying over the loss of my best friend.  It is truly a despicable disease.  I do the ALS walk every year and if you are given a chance, don’t hesitate to walk or donate to this cause.  A cure has to be found.   My friend’s kids both graduated and are both in college.  Her husband is getting remarried this coming Saturday.  I cry at the loss of them as a couple, it is hard to see him with someone else.  I know he is happy and I am happy for him too, but he is supposed to be with my friend.

K = Kissing = Mwah     and    L = Lou Gehrig’s Disease (ALS)

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18 thoughts on “K & L = Kisses and Lou Gehrig’s Disease #ALS #SpanksA2Z

  • Natasha Knight

    I read this this morning and I cried in my bed. This is a really great post to put life into perspective. I'm so sorry for your loss, for everyone's loss and I understand what you mean at the end with her husband being remarried – you want him to be happy, absolutely, but she should be there. I'm crying now thinking about it again. You're a courageous woman. I love you lady.

  • PK Corey

    What a powerful post. This horrible disease too a beloved aunt of mine. I'm sorry for your loss and happy that you were about to be there for her. That can leave you sad at her leaving, but without guilt, and that is so very important. Everyone should have a friendship like this.

  • katherinedeane

    Wow, Megan.
    I am so touched right now by the emotions that poured from you.
    You are such a kind, caring person, and your friend and her family were very blessed to have you.
    hugs and <3
    thank you for sharing with us

  • Stevie MacFarlane

    Oh, Megan, how brave you are. Your friend sounds like an amazing woman and you were lucky to have each other. I'm sure she treasured having someone she could let her real feelings and emotions out with, even though it had to have been so difficult for you. You are both blessed and a blessing to others. Thanks for sharing this story, even if you did make me cry. <3

  • Ruth Staunton

    Like everyone else, I'm in tears reading this. What a story You have, chick. Sounds like an amazing relationship and an amazing lady. The people who touch us are never forgotten, as you clearly know well.

    ALS is a devastating disease. I had a colleague in my last teaching job who lost her husband to Parkinson's, which for him, progressed very similarly to your friend's ALS. Though she had known for a while that this was coming, it was an extremely hard thing to deal with. I think for her, the worst of it was the pervasive feeling of helplessness. Her husband's body had turned against him and that was not think she could do. As hard as it was, she never regretted marrying him or being there for him. Somehow, I think you can understand that too.

    • Megan Michaels

      These diseases that effect nerves like ALS, Muscular Dystrophy, Parkinson's, etc. are devastating. Their minds, for the most part, remain intact. It is very sad to watch them waste away and see the pain of knowing on their faces. Yeah, her husband never regretted it either. I am sure he had his days of discouragement, but overall it was worth the fight. Thanks for the words of encouragement!

  • Trent Evans

    There is a price that love makes us pay, the toll for that wonderful joy that love brings to us.

    Tears. Deep oceans of tears.

    An incredible, moving account, Megan. Thank you for sharing it with us.

    • Megan Michaels

      It is still one of the hardest things I have ever lived through. The loss of her has left a huge void in my life. What a beautiful response you wrote. It brought tears to my eyes. Thank you.