When I run into coworkers, friends, family, people from church, etc., I can see in their eyes that they feel sorry for me. 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 really quite good. We get along very well. We have wonderful family members both close by and far away who constantly support us and give us encouragement. We have a church family that really walks the talk that Jesus proclaimed while he walked the earth. I work for a compassionate supervisor in a job that is challenging and rewarding. 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 almost never get to “sleep in,” or sit down to read a book or watch TV. I never go out on my own to shop or 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 basically 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 and 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 that sadness in their eyes and say they couldn’t do it, what they don’t understand is that we didn’t get where we are now overnight. It was a progression of decline. By stages his abilities got less and at each stage we learned to adapt. When it’s gradual you have time to adjust and seek ways to make it better and …. find a new normal. The people who wake up and suddenly can’t walk, or see, or hear; they are the ones who have it worse. MS can do that to you. One day you are fine and the next day 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 or deaf, or immobile. No one has time to really adjust…. Suddenly your lives change and you’re thrust into a new reality. Now that’s hard.
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 really lousy, but when he has asked me the same question three times in 3o minutes, it gets annoying. I can’t imagine dealing with that over and over and over again 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 really feel for those whose loved one is mobile but not thinking clearly. I would be afraid all the time that they would leave the house or 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 and that 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 are but in their shoes, they may look at you and think the same. Everyone’s pain is real. Everyone’s challenge is theirs and it’s just as difficult as the next person’s.
So who has it worse? We all do; each in our own way and each with our own struggles. That’s why we need each other and God to help us carry on from one morning to another to another to another….
Ps. Feel free if you every need to share to drop me a line if you don’t want to do a public comment. Sometimes it helps just to share.