Wednesday, June 6, 2012
Having support groups is amazing. I don't know where I would be in my life without them. I have a wonderful support group (actually, several!) for my Crohn's disease. I have several support groups for cystic fibrosis. And I have a support group for being a cystic fibrosis wife. The latter I am most thankful for to this day. As a CF wife I felt so alone. I only personally knew one other woman out there going through things similar to myself but I knew there had to be more. I was so grateful when I was introduced to the facebook group, CF Wives. I am sure I've talked about it before, but these ladies have been my go-to and my life support for not only CF husband related things, but everything in general. We have a bond that is unbreakable.
I laugh with them and I cry with them (sometimes just flat out sob). I truly feel their pain and get exactly where they are coming from with their worries, stresses, annoyances, and fears. We get each other perfectly.
And one of the best things about these ladies is that they have not once turned me down and shut me out because my husband passed away and I am now a CF Widow instead of a CF Wife. I have been able to remain a part of this group and continue to share what I know about being in these various circumstances with my husband. It's been great to be able to help these other ladies out - but it's also been hard sometimes being a member of this group. Just hard emotionally. I see these ladies posting about their husbands deteriorating lung functions and being listed for transplant. And while being listed for a double lung transplant having many complications.
And while I know that no two CFers are the same, I can see some of these wives getting ready to walk down the same road that I did. The symptoms and complications they describe are some of what Spencer experienced several months before getting critically ill. The lung functions being so low you wonder how he is even breathing. The struggle for air after a coughing fit and you wonder how they aren't passed out. The talk to the doctors about transplant. The talk about his future. Your future. The hospitalizations every single month. Being put on oxygen at night... and then increased to 24/7. Lungs giving out. Life support. ICUs. The inevitable. The absolute horrible inevitable happening.
Sometimes it's hard for me to say anything because I don't know what else to say but "I am so, so sorry." and mean it with EVERY ounce of my being. But it's hard to express how much you truly mean something when you're only typing it out. Sometimes my emotions are so strong for them that I feel like I need to say something but no words can come to mind. Because sometimes, there is simply no words to describe what a person is going through. To describe how much it really does hurt and how hard it really is.
Sometimes, a lot of the time, I want to say too much - but I have to censor myself because I don't want to scare them with telling them that their husbands symptoms have been mimicking Spencer's the last year of his life. The last thing I want them to do is be paranoid because that's the path that my husband's health took. All I can say at times, (when I desperately want to beg for them to look into things further because I am scared for them) is just that I understand. That I've been there and I'm here if they need anything. But oh gosh... do they really get just HOW MUCH I understand it? (I'm sure that they do, at times... but there are sometimes when I wonder.)
There are times where I want to say things such as "Just stay by his side and don't let go. Hug him and love him and kiss him and CHERISH the moments you have together. Take pictures and record memories like it's a priority. But never, ever forget to live in the moment because in the blink of an eye your life can change in an instant.... and I just have a feeling that instant is going to be coming sooner than you realize.... Just like it did to us..."
But I never say those things because I want to be positive. Uplifting. Encouraging. But at the same time I want to be real. I don't want them to be blindsided just like I was. I was living in a state of denial of Spencer's health. Of course I knew it was bad. Of course I knew that transplant was getting closer -- but I also thought that he was going to improve. A LOT. More than he probably ever would. Even though I knew things weren't good - I didn't realize how bad they were. How bad that they COULD be. I didn't understand the complications that could happen with his lung functions being so low and with his health the way it was. I was never told. And I understand why. If I would have known those complications that could have happen (that, unfortunately, did) I would have lived every single day in pure terror knowing that at ANY moment CF could take his life with a complication. I wouldn't have LIVED. WE wouldn't have lived.
But now that I know what kinds of things can happen and how serious and life threatening these things can be - sometimes it's hard for me to hold back with what I want to say. Because I want them to be aware.... but the vicious cycle is there -- How much would they really want to know and want to think about all of the time. Therefore I am very censored a lot of the time. I just have to be. I won't allow myself to let another CF wife live in (even more) fear because of me.... If they want to know, they can ask. I have to constantly tell myself that.
.....because sometimes the fact can just hurt. A lot of CF wives don't like to think about what could happen. I didn't. Every single time you think of the future and all of the uncertainty this disease holds, the heartache is absolutely unbearable and you start to focus on what 'could' happen instead of just living and enjoying things in the moment. I mean, who wants to think about their dying husband?
Sometimes I want to BEG them to push harder for transplantation when I see that their husbands lung functions are so low because I saw how sick Spencer got SO quickly. Spencer lived with very low lung functions for a long time. I mean I don't know how much LIVING he did... but he survived. A long time. He was "stable" and transplant wasn't seriously considered (number of reasons I won't get into.. complicated!) I see some of the ladies saying that their husbands have been doing so well with lung functions in the 20's and even teens. But the truth is, it scares me. Once your lung functions get so low, if a complication happens there may be no bounce back and you are on very borrowed time having to scramble to get a transplant to happen. I've seen this happen... I've lived this. My husband happened to fall into that category.
As several of my friends can say, I have seen end stage cystic fibrosis. I have seen it and I know what it can do to the person. To the family. To the caregiver. To the friends. A lot of those same friends have also witnessed the gift of life. Transplantation.
But not only I have seen end stage CF -- I have been THROUGH it and I witnessed it's ugly end. It makes my perspective so much different now. Hindsight, right? It's a perspective that I don't know that I wish I had when Spencer was alive. Of course some of it, okay the majority of it, would have been VERY useful, but I think some of it would have had me living in fear. All of the time even worse than I was. I don't know if Spencer would have been able to handle the kind of perspective that I have now.
This is why it is sometimes hard wondering what to say in the group. Because perspective changes and I know so, so much more now than I did before.
I know if I write much more I'm going to begin rambling (if I haven't already... whoops) but I really wanted to write about that. It's been on my mind a lot. I will never leave the CF Wives group (at least not for a VERY long time....) I love these ladies so much, as I have already mentioned. They are my family. I am so happy to support them and give them my advice. But it's just been hard. It's even hard on some of them who HAVEN'T been through the loss of a husband. Many take short breaks from the group so that they can re-group. It's all okay. This is kind of my re-grouping time. Writing about what is on my mind and coming to a conclusion. While writing this post I realized a few things myself that I don't know I would have realized without posting this blog. Writing helps =)
There are a few other thoughts on my mind tonight, but I think I'll leave it at that. Save them for a new post =)