When I run into coworkers, friends, family, people from church, etc., I can see in their eyes that they feel sorry for me. So many say, “I don’t know how you do it, day in and day out. I don’t think I could.”
I don’t feel comfortable when someone tells me that. I don’t feel like I need anyone’s pity or that we are a tragic couple. I know that our lives are quite good. We get along very well. We have wonderful family members, both close by and far away, who constantly support us and encourage us. We have a church family that walks the talk Jesus proclaimed while he walked the earth. I work for a compassionate supervisor in a challenging and rewarding job. I have the best employees working for me that anyone could ever ask for. I love where I work and what I do. We have enough–enough money to pay our bills, more than enough stuff, as evidenced by the fact I can’t find enough places to put it all, and more than enough food, as is obvious by our waistlines. We have good lives.
Yes, our lives are hard at times. Lynn rarely feels good. He is often uncomfortable. He is needy at times, stubborn at others, often funny, and sometimes angry. I seldom get to “sleep in” or sit down to read a book or watch TV. I never go out on my own to shop, visit, or do anything that is not essential. I watch every penny we have, and the money going out is often more than the money coming in, but not always… so it evens out.
Lynn has a lot of physical challenges. He has no use of his legs or right arm, and his left arm fatigues by the end of the day. Many of his bodily functions do not work well on their own and need some help along the way, like urinary catheterization or a bowel routine. It takes a lot of strength and energy to move him around by the end of the day. I’m often tired and sore, but a good night’s rest, and I’m fine to get back at it again the next day.
When people look at me with sadness and say they couldn’t do it, they don’t understand that we didn’t get where we are now overnight. It was a progression of decline. His abilities grew less through stages, and we learned to adapt to each stage. When it’s gradual you have time to adjust and seek ways to improve it and find a new normal. The people who wake up and suddenly can’t walk, see, or hear are the ones who have it worse. MS can do that to you. One day, you are fine; the next, you can’t see anymore. How scary is that? You don’t have time to adjust. You just ARE. Everyone is scared but trying to support the one who is now blind, deaf, or immobile. No one has time to adjust… Suddenly, your lives change, and you’re thrust into a new reality. Now that’s hard.
Do you know what else is hard? When you’re caring for someone whose memory is fading. Lynn occasionally has some cognition issues. It’s usually just when he’s very tired or feels lousy, but it gets annoying when he has asked me the same question thrice in 3o minutes. I can’t imagine dealing with that repeatedly and knowing that it’s going to be like that every day, all day. With Lynn, I settle him in one place, and he has to stay there because he’s immobile. I feel for those whose loved ones are mobile but not thinking clearly. I would be afraid all the time that they would leave the house, start a fire, or turn against me because they didn’t know who I was. That’s got to be so much worse than dealing with someone who is physically challenged. ….. or maybe not.
What I do know is this–whatever is your challenge…whether physical, mental, spiritual, emotional, or whatever it is, it’s your challenge, which makes it difficult and becomes your struggle, and whatever that struggle is, it’s hard for you. Yes, you can always find someone worse off than you, but in their shoes, they may look at you and think the same. Everyone’s pain is real. Everyone’s challenge is theirs, just as difficult as the next person’s.
So who has it worse? We all do, each in our own way and with our own struggles. That’s why we need each other and God to help us carry on from one morning to another.
Also, feel free to drop me a line if you ever need to share something without making a public comment. Sometimes, it helps just to share.
