I married my high school sweetheart. We were young, but had confidence we could beat the odds and would be together into our senior years and beyond. We survived the early 70’s, the drug era in our society and having a baby at 18. In 1982 we were confronted with an illness that would challenge all our dreams.
How do you cope with such a devastating disease? How do you have hope when your world is turned upside down? We struggled with multiple symptoms for a year and then got the diagnosis, Multiple Sclerosis. If you or someone you know has health limitations, a chronic or terminal disease, there are ways to cope and hope. Here are a few:
Enjoy life.Tom had a great sense of humor to the very end. I remember we went to see The Karate Kid, he had a cane. We saw a friend in the lobby afterward and he said hello by going HIYAH! doing a karate chop and a little kick and nearly losing his balance in the process, which was precarious at best then. I got a golden retriever to keep him company. Daisy was her name. They never bonded, Tom said the only thing she would do was wag her tail when he fell down. Sometimes he told jokes that weren’t very funny, but though he could hardly talk, he laughed so hard in the telling of it, it became hysterical.
Put one foot in front of the other, as best you can. Even with a cane, which progressed to a wheelchair. You have to keep going and deal with what’s before you. Hard to do when you keep losing ground just as you get acclimated to the current assault. The MS was chronic progressive so he never had remissions, only a steady deterioration and a steady determination.
Support is essential. Tom went to MS support groups. He made good connections to people who could understand his illness, the physical limitations and pain, and the emotional turmoil. He was a man in the prime of his life, he had to go into a wheelchair when he was 30. We went to counseling because it was difficult for our teenage daughter and him to deal with this ravaging illness. Ravaging to mind and body. Friends and family were invaluable whether doing or simply being there. Do this for someone and the blessing will be theirs and yours.
Medical Treatment. By 1987 he kept getting infections, pneumonia or sepsis. He could hardly talk. I asked him about a ventilator if it came to that. He said “ don’t prolong my suffering.” He was in severe pain all the time. I was crying, he said “don’t cry.” He knew if he did not get healed there was a new body in heaven and he would receive the ultimate healing. He took meds initially which made him immunocompromised and susceptible to infections. We both took vitamins, and he took strong pain medicine. He had a neurologist at IUMC and he would tell Tom be cool, because heat wipes out someone with MS. Tom laughed and said,”if you look cool up in the dictionary you see my picture!”
Eternal perspective . As he lay dying, I remember the chapel in the hospital had a stained glass that said underneath are the everlasting arms. I felt like I was falling, so God’s arms to catch and comfort were amazing to me as I became a young widow. God will care and carry us through the difficult times. I knew I would see Tom again and he was having a high old time in heaven beyond my limited comprehension, The kids gave me reason to go on also. Stacy was 14, Zachary 8. Tom and I were 32.
Journal. After Tom died I began journaling. A traumatic event can be strong and intrusive, and will impact you for the positive or negative. Journaling can decide what that role will be and the level of intensity it plays. It gets thoughts and emotions on paper so you can sort them through and find answers. I found this and reading were counselors to me.
Don’t give up or Give in to defeat. My sister was diagnosed with MS the same time as Tom. And you won’t believe this, I was diagnosed in 1999. More reasons to cope and hope. Have a positive outlook, for where your mind goes your emotions will follow. So no negativity. If you get your healing now or not, God has a purpose for your life.We live in this crazy broken world. Jesus came to help us in the journey and heal the brokenhearted, Isaiah 61. My granny was bedfast and didn’t talk. She was alert and I told her she at least still has the privilege of praying for people. Once we saw her and walked to the park. When we got back she, who didn’t talk, said “How was your walk?” I knew she was in there.
What is your journey? I pray for smooth travels for you and yours and that you cope and hope! God Bless!