So I Don't Forget . . .

I'm hoping I never have to again experience what it's like to be told you have a long term terminal illness.  I'm glad I got the chance to go through it and I want to remember what it was like so that I'll know how to respond to others dealing with similar issues. There are so many parts you never hear about.

No one knows what to say to you. We stopped going to church for about a year because it took me several days each time we went to get over the emotional toll of attending church and seeing the reactions of others. Not that anyone was mean - I don't mean to criticize anyone. I had no idea what to say or do before going through this.

There were the people who didn't know what to say, so they avoided me. It made me feel like a pariah. I tried to stay as invisible as possible and never meet anyone's eyes so that I didn't notice when people quickly looked away or awkwardly ignored me.

There were the people who knew the generalities of what was going on and felt like they should say something, but felt awkward about it. Being asked how things are going when things aren't going well is hard, especially if I didn't know them well. Then I had to pick between being honest and explaining details, and just saying "no change". If I explained any new developments, I got to relive having to go through learning about them myself as I watched the expressions on their face as I talked. I usually just smiled and said that things were the same. The disappointment on their faces with that statement was much easier to handle. Having people who barely knew me, but felt obligated to ask me how I was doing also made me realize all over again how sick I was.

The best responses were from people who obviously cared, who didn't try to sugar coat things or be falsely optimistic. One lady came up to me at church after I had posted a depressing update on my blog. I didn't know her well, but she said "I read your blog post. It made me want to cry. I'm so sorry." That meant so much to me. She didn't ask any more detailed questions, but she let me know she cared. She kept up on what was going on by reading my blog posts. I tried to post any major updates on my blog so that I didn't have to explain it over and over to people. Every time I had to tell someone about it, I relived it.

Another response I loved was "You're in my prayers. Let me know if I can do anything to help." Not asking for additional information. Letting me know they were there if we needed help and they cared.

Basically, the responses that meant the most told me they cared, this sucked, and let me know they were there if I needed them.

Another issue that was hard to deal with was the incredible decrease in energy and capabilities, but no outward changes that made that obvious. I think I've seen more about this online than any other part of having this type of challenge. I didn't look sick. Many people didn't understand what it was like. I lost friends and had family members judge me because I didn't have the energy to go places I "should" have gone or deal with have conversations that required a lot of energy.

People made comments to us about having our priorities in the wrong place as I kept working, but didn't attend church. I HAD to work. Even though we have wonderful insurance, copays add up fast. Plus we have six kids. Kids are expensive. Rob couldn't work two jobs and run the house and take care of the kids. We needed the money. Also, attending church emotionally crushed me due to the reactions of others. My clients had no idea what was going on and the people at work who knew about it reacted in ways that helped, rather than hurt. I guess working with a bunch of therapists was helpful in that area :)

Other judged me because I worked, but slept  most of the time I was home with my kids. I had one doctor tell me off for continuing to work, telling me I was cheating my kids out of something vital. SHE had quit her job and stayed home with her kids and it turned out to be what she needed to do, so of course it was what I needed to do. I didn't know how to respond to her, but fortunately didn't have to see her very often after that. I'm glad she was able to figure out what was best for her, but that was not best for me. As I mentioned before, we needed the money. Also, we have half a dozen young children. I didn't have the energy to do the things they wanted to do. All I could do was sit and cuddle them and read to them or watch TV, which I did. But they didn't want to do that all day and I didn't want them to do that all day. Our babysitter did the things I used to do that I wanted them to experience. She took them to the park and played outside with them and taught them to bake cookies and made playdoh and did arts and crafts with them. Rob and I put a lot of thought into me working and it was the best balance for us. It also helped emotionally for me to work. I couldn't do many of the things at home that I had done. I couldn't do the laundry and organize the clothes and toys and clean the house. I still could do some things - like balance the check book and pay the bills. And I cooked some nights. At home, I was surrounded by things I wanted to do and couldn't do. That is hard. At work, I could sit for hours and talk to clients and see that I was helping them, and on top of that, I could make enough money that Rob didn't have to work a second job and was able to stay home with the kids at night and on the weekends.

One of the very hardest things for me was watching people that I hadn't seen for a while as they noticed the differences in me. I was never in denial about what was going on with me. I always took my meds and watched my diet and went to my treatments. But I avoided thinking about it unless I HAD to. Also, as we learned about what was going on with me, we learned in stages, so it built up gradually, with big hits when I'd have a doctor's appointment or get test results. Maybe it was worse because I read people for a living, but some of the worst times for me were watching people who had known me before I got sick as they saw just how sick I was. That brought the sides of my carefully constructed box that I kept this issue in crashing down. This is in no way saying any of them did or said anything mean, but it was really hard for me to live through. I'm sure it was really hard for them to live through too.

Which brings me to something else I had never thought about before going through this - how this influenced Rob and the kids. I think the beginning of my illness was much harder on Rob than it was on me. The meds they were starting me on were so strong, that I slept through most of those months. Rob had to go through suddenly losing me, almost like having me disappear into a coma. He had to deal with the kids' questions and fears and he suddenly had to jump into being both mom and dad. And he did all of this not knowing when my heart would decide to give out, taking me away permanently.  I don't know what else to say about that. That part makes me hurt more than anything else I've typed.

Another thing you don't hear about is the time you lose. I remember a friend telling me that she had to go to counseling after battling cancer for two years because of the overwhelming grief over the loss of those two years. There are so many, many thing I missed that I will never get back. I don't remember Laura's first words or first steps. I missed holidays and birthdays and milestones. I lost the person I was - I don't think most of my kids even remember that person. Laura is so used to me sleeping that when she sees me, she always responds with "Mommy! You woke up!" I know I gained so much going through this and I wouldn't go back and change it, but the price is very high.