At the age of 36, I was diagnosed with ALS, amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease. What started as a page on Facebook, eventually developed into this blog, at my daughter’s request.
Now, 10 years later, I am surprised to be alive. Not only that, but I am thriving. I have three children. All of them are in their 20’s and though I have had a tracheostomy, and I can’t move anything except my head, they have settled into “this is our life now.” They know what I can and can’t do, and we live our lives accordingly.
So, why do I call my site “Things I Want Your Heart To Know?” Because my three darlings need to know what is in my heart; and I wish for them to carry my love for them in their own.
I’m in the process of being accepted into Southern New Hampshire University’s Masters program for English and creative writing. At the onset of living with ALS, I earned my Bachelors degree for English literature. I always had a dream of being a PhD, and the Masters degree is the last before a doctorate.
When I say “ALS means nothing to me” or “I am living with the disease” I am saying, despite outside appearances, I don’t accept ALS is a part of me; it is outside of me. With that, I won’t let this disease define me.
If you are living with this horrible diagnosis, I invite you to mindfully disconnect your disease and follow your dreams. Do what you want to do. Tell ALS off and never invite it in. You have the mental strength to achieve your goals!
Psalm 28:8 – The LORD is their strength, and He is the saving strength of His anointed. (KJV)
Before I list them, I have to tell you that although I’ve rejoined the Catholic church, I’m a Protestant at heart. I follow and read, every day, the King James Version of the Bible, rather than the Good News Bible, as most Catholics do. Why? Because I believe that the more you “Dumb Down” a Bible, you walk away from the original meaning. I don’t believe the Apocrypha has a place in any Bible. Further, I believe the KJV is beautiful in its translation.
The Ten Commandments can be found in Exodus 20 and in Deuteronomy 5. I give you the Ten Commandments:
And God spake all these words, saying, I am the LORD thy God, which have brought thee out of the land of Egypt, out of the house of bondage. Thou shalt not have any gods before me.
Thou shalt not make unto thee any graven images, nor any likeness of any thing that is in heaven above, or that is in the earth beneath, or that in the waters under the earth: thou shall not bow thyself to them, nor serve them: for I the LORD thy God am a jealous God, vising the iniquity upon the children unto the third and fourth generation of them that hate me; and shewing mercy unto them that love me, and keep my commandments.
Thou shalt not take the name of the LORD thy God in vain; for the LORD will not hold him guiltless that taketh his name in vain.
Remember the sabbath day, to keep it holy. Six days shalt thou labour, and do all thy work: but the seventh day is the sabbath of the LORD thy God: in it thou shalt not do any work, thou, nor thy son, nor thy daughter, thy manservant, nor thy maidservant, nor thy cattle, nor thy stranger that is within thy gates: for in six days the LORD made heaven and earth, the sea, and all that in them is, and rested the seventh day: wherefore the LORD blessed the sabbath day, and hallowed it.
Honour thy father and thy mother: that thy days may be long upon the land that the LORD thy God giveth thee.
Thou shalt not kill.
Thou shalt not commit adultery.
Thou shalt not steal.
Thou shalt not bear false witness against thy neighbour.
Thou shalt not covet thy neighbour’s house, thou shalt not covet thy neighbour’s wife, nor his manservant, nor his maidservant, nor his ox, nor his ass, nor anything that is thy neighbour’s.
John 14:15 – If ye love me, keep my commandments. (KJV)
ALS has been a bane in my life, but it hasn’t stopped me from finding joy in every day. I’ve had two milestones in the last two weeks.
First, my eldest son added a grandson to my grandchildren! I now have Loki and Leon, the loves of my life, along with my children and my daughter-in-law. Oh, how I love them all!
Second, My 48th birthday. I had a party with my immediate family. My children were there, along with my mom. My daughter, who lives in Minnesota with her boyfriend, whom I adore, was present by facetime. I had a wonderful time with my family!
I also had a surprise party with my two out of four best friends, Katrina and Sherry. I was shocked when they came in with a plethora of balloons, gifts, a special cake, and singing “Happy Birthday” smiling their sweetest smiles.
I look around my bedroom, at the gifts and the balloons, and feel the love my family and friends have for me, even on a normal day like this one! There is happiness to find in every day, you just have to open your eyes!
3 John 1:4 – I have no greater joy than to hear that my children walk in truth. (KJV)
He, my late husband, is the reason I couldn’t write last week. Our 10th anniversary was on January 7th, and I was grieving. He may have passed away (in October 2021 it was three years since he died) I still miss and love him.
That’s a problem when you’re living with ALS. When you turn into a quadriplegic, like me, there is no unhealthy rebound, no chance of a romantic relationship, no opportunity to meet another person face-to-face. Loneliness and grieving ensues. When I’m alone in my room, I feel ALONE!!! With all caps and a thousand exclamation points.
What I need to concentrate my thinking on is God’s Word, the Holy Bible. God tells me that Jesus holds me in the palm of His hand. That God will never leave me nor forsake me. I am loved by my Lord, more than my heart and mind could ever comprehend.
Would you like to be loved in that way? It’s very easy! All you have to do is this: Repent of your sins and ask Jesus to reside in your heart (save you). That’s it! My conversion happened at a Christian summer camp. While we were singing a favorite Christian tune, I had an overwhelming feeling of God’s love. I was 17. It changed my heart, soul, and mind forever.
1 John 5:2 – By this we know that we love the children of God, when we love God, and keep His commandments. (KJV)
My husband passed away three years ago, but not before he left me well-cared for. With the money he left me, I was able to afford, among other things, an EyeGaze computer with a stand that swings over my bed and me. All I need is one of my caregivers to set it over me and push a few buttons, then I can take over using nothing but my eyes!
Right now, as I’m writing (eyeing?) this blog post, I am so grateful to my God and my husband for bringing this device into my life and giving me the means to purchase this computer.
But the blessings from my Lord doesn’t end there! During the weeks when I was suffering from one thing to another, God led me through it all. I greatly dislike having to live the life of ALS, and sometimes it’s overwhelming. However, the Holy Spirit comforts me.
First, God arranged to send me to a Christian summer camp. While there, I sang, along with all of the other teenagers, a song that had the greatest blessing. I opened my heart to the Lord, and miracles of miracles: Jesus saved me! He became my Savior and forgave all of my sins; and He still does today.
Hebrews 13:5b – … for He hath said, I will never leave thee, nor forsake thee. (KJV)
As I said in my last post, I am living with both ALS and menopause. I also mentioned that I was about to start taking a pharmacist-recommended over-the-counter pill for the symptoms of menopause. For me it was hot flashes.
The first night I took the supplement, I had zero hot flashes! However, the next two nights, I burned from inside. Then, on the fourth night, I didn’t have a hot flash. And I haven’t had one since! The best I can tell, is that my body was bombarded with a pill it didn’t expect and that’s why I didn’t burn the first night. It wasn’t a surprise on nights two and three, so it had to build up in my system. That’s why, I believe, I haven’t had a hot flash since.
I would recommend that if you’re going through menopause, whether you are living with ALS or not, to speak to your doctor about what you should take for your menopause symptoms.
Psalm 71:12 – Oh God, be not far from me: Oh my God, make haste for my help. (KJV)