Another yucky day outside so Frankie and I have turned on all the lights to brighten things up. Craig is still sleeping. We went to the dentist the other day, now we are confused as to next steps. I think we should call the ALS Association or get on the web to find a peer group. Caring for teeth and lots of other things are challenging when you lose the use of your hands, and although Craig denies it, we think he is opening sodas with his teeth. This has led to the loss of two side teeth. Bottom-line: due to other issues he needs 4 extractions, cavity, and gum work involving at least 4 appointments.
Given his diagnosis, we had to discuss options for the missing teeth. Luckily, we had discussed Craig’s issues regarding end of life recently and agreed upon what we try to laughingly refer to as the “2-year plan.” The neurologist wants us to seriously consider a feeding tube because outcomes are better for individuals who put the tube in early, meaning they seem to live longer, however, quality of life was not addressed. So we took that to mean Craig would live longer but he would be dependent on others for help with activities of daily living and unable to communicate verbally. He is not sure at this point what he wants to do, thinking maybe if he waits long enough he won’t have to decide (ironic chuckle).
Yesterday I saw the surgeon about my hands (we can chat about knees, feet, hips, shoulders, jaw, and elbows another time); 30+ years of on and off active disease has resulted in dislocated knuckle (MCP) joints and tendons that are stretched and have slipped to the side causing the fingers to drift to the side (ulnar deviation). My wrists are nearly fused (locked in place) and it is impossible to lift my fingers, but what I do have that is a tremendous blessing is the ability to pinch with my right and left hands.
Given the significant joint damage I have from long standing rheumatoid arthritis, Craig’s neurological disease, and sweet Frankie’s emotional and physical needs, we feel like we are in a leaky boat without any paddles!
It is hard for us to ask for help but I recall that many years ago Mom told me the Holy Spirit gives everyone gifts and allowing others to help you and show their love offers them the ability to express their gifts. This is in fact a gift you can give them, to accept their offer of help with gratitude and love. This was brought home to me dramatically just the other day.
I was feeling sorry for myself because I needed to go see the hand surgeon on Tuesday and nobody were available to go with me. It was an early appointment and not practical to get Craig up and about. Others were at work. Then I remembered my new next door neighbor. A previously unknown cousin had moved in next door. She reminded me of all my aunts on my Dad’s side and we had briefly talked once before. She had lost her husband 5 years before and her daughter lived out of town. She was retired so I took a chance and asked her to go with me and she did. We had a wonderful day filled with the occasional happy tears. The surgeon said to watch for increased pain and functional loss but until then the outcome of any surgery to my hands would not be compromised by waiting a few more years. We went to lunch at Sweet Tea’s for veggies and cornbread. Turns out my cousin loves to cook. I can hear Craig cheering in the background! I believe he has eaten one too many Hot Pockets!
As we said goodbye for the day, I mentioned how much I appreciated her company and told her how it had been difficult to lose my strength to rheumatoid arthritis at such a young age. Then when Craig came into my life 25 years ago I felt God had given it back to me. Craig is 6’5’ and was a strong young man when we married. I called him my mover, he never saw a box too big or heavy to handle. Then ALS came along; it destroys the nerves resulting in muscle wasting. The hands, arms, and shoulders are often the first areas affected. This means you basically hold things between your two wrists since you no longer have any grip strength. The weight of the object is also a challenge, many mishaps occur which can result in frustration, anger, or — in our house — often laughter to cope.
I said it was even harder in many ways to lose my strength a second time; that there have been times when I have cried in pain and anger trying to understand the “chronic” aspect of diseases. No end to the losses, it would seem. But you know what my cousin said? “I’m here now, Jan,” (how beautiful that sounds) and “God is giving you back your strength for a third time. I was meant to move next door. “
Yes, there is more to do; people to love and places to see. Our time on earth is short, and as a respected faithful man once said to me when I was in a hurry to get to heaven, “You have eternity to be in heaven, there is more to do here. There is a reason you are still here.” Count it all joy, give of your time and gifts, and allow others to give to you.
Me and Frankie plan to go join Craig and take a nap – should be all warm and the pack loves to cuddle!