When you first suspect your loved one has MS, you tend to find ways to deny it. Lynn kept saying his doctor had ruled it out. I kept saying, “Are you sure you’re telling him everything?” When he said, “Yes,” I would accept that as true because I wanted it to be true…denial.
Then, the day came when all the tests were back, and there was no denying the fact he had MS. By that point, he had significant symptoms he had denied, which I no longer could. By late into the evening hours, he was doubled over, unable to stand upright. He would fall easily and drop things. He was too exhausted to eat, and he loved to cook and eat. We would go to the beach for him to fish, and he would find reasons not to go out but to stay in and rest. So, I knew well before the telephone call what the diagnosis would be.
I quickly moved from denial to anger at that point. I would not play his game anymore of pretending the elephant in the room wasn’t there. I was furious with his primary care doctor. Why hadn’t he seen what was happening before Lynn got so bad? He had a family history of MS, for heaven’s sake. Was he a quack? I was ready to report him to the Board of Medicine for being incompetent. Then, I realized that the problem might not entirely be the doctor’s fault; it might be Lynn’s. Lynn was so sure he could NOT have MS, or rather, he would refuse to consider the possibility that I suspect he hid his symptoms. He has even acknowledged as much to me since. I was angry at him when I realized Lynn’s refusal to face the possibility. Being mad at Lynn brought about all sorts of conflicting emotions.
(1) I was supposed to be his support system while he adjusted to the news he had MS, BUT inside, I was saying, “See. I told you so. Would you listen if you didn’t have to have gotten this bad? No! Now, look at you.” Of course, I could not say that, but it’s what I was thinking.
(2) It’s politically incorrect (not to mention futile) to be angry at someone for being sick. As a society, we look in horror at someone mad at someone for being sick. How can they be so heartless? So, we don’t show the anger externally…but it’s there. This “disease” has now put the one who has it in a place of more considerable significance. No longer is the playing field even, but now all decisions will be made based on the impact of the disease. Being selfish by nature doesn’t always sit well with me. I resent when I can’t do what I want to do because of the “disease.” I’m not the one who is sick, but I’m the one who has to fix everything so that he can be as comfortable and as well as possible, even when my health might suffer.
(3) I became angry because I didn’t want my life to change. I liked being able to go to work, go out, sit and read, go to bed when I wanted, eat out, and many things that would change. This emotion I struggle with a lot now. I have no “me” life, or at least it’s minimal. I go to work away from my caregiver responsibilities once a week. That’s my only time away from him besides a quick trip to the grocery store, pharmacy, or library. Nowhere else do I go…and I get tired of that. I see a movie advertisement and want to see it, but I can’t. I know that I have to wait till it comes out on DVD and then I’ll only see it if it’s something Lynn would also like to watch, and if we watch it, we do so as I feed him. I rarely have time to sit and watch a movie (or anything) on TV. I used to LOVE to read. Now, I feel guilty if I skim an article online because I know that will put me behind in everything I need to do. (I get around this one by listening to books on tape from the library…a great escape!)
(4) I’m angry that I cannot retire to the “good life” we had planned. The house we had started to build sits idle with a completed foundation and likely will never become a home. All our spare cash goes to buying organic food, supplements, and equipment to meet his medical needs. We cannot travel because he cannot tolerate it. I can’t get an aide or assistant caregiver because they are too expensive full-time, so I must work and do his care independently. If I were to retire (I’m almost 58), then we would not have enough money to continue to support his health as we do now, and he would likely get worse. So, I have concluded that I will have to work until I die or become disabled myself and can no longer go on.
(5) I’m angry about all the events I miss. I want to play with my grandson at the park, go to my parent’s home for family reunions, attend a conference at work, go to the Christmas cantata, attend church regularly, go places, do things, see people, and I can’t. If an event is not at hour home, we don’t get to attend because Lynn cannot tolerate being out for very long, and it’s challenging to get a caregiver that doesn’t cost anything when most of my “backup” caregivers are at these events themselves.
There is much about which I’m angry. I’m not upset with Lynn. I’m mad that he has MS. I’m angry that this monster has invaded our lives, and there is no getting rid of it short of death. I’m mad that as hard as we work to make him feel better than 6 ½ days out of 7, he feels terrible. I’m mad that he can’t help me. I’m angry that he can’t share the joy of playing with our grandson. I’m furious that he can’t sing at church or play the drums or accompany himself with his guitar because he was SOOOO good at all these things.
I’m angry that I can’t fix this. I’m mad that I have to watch him suffer. I’m furious that he needs me so much and angry that I can’t give more. I’m angry….
But not always. Just sometimes.
This article originally appeared on Multiplesclerosis.Net by Health-Union, LLC, and has been reposted with permission.
