On Grief and Pain

The past few weeks have brought me back to those few times in my life that time has stood still, that reality seems to be quite unreal, and that the truth of my illness seems to pour out of every pore of everything around me and my family. I am glad to say that I have not been in this position for quite a while. May be 6-8 years. I have had small episodes, but these moments are different. Along with the physical, comes the grief and the emotional pain. It's difficult in many ways and this time it's even harder as we are expecting a baby, and the thought of not being there for her is proving to be very stressful for me. I know that I will be okay, I have faith and hope. I have been here before, and I will be here again, that's the nature of this illness, but it seems like every time it's just as hard. You forget that it will get better, and that you will be able to walk and move around normally again.

Recently I have been reading many blogs, ones that I follow, and new ones here and there. Many of them are from other CF patients, some are transplant recipients, some deal with infertility, adoption, surrogacy....a whole range. But throughout all these runs a common theme, pain. Mostly emotional pain. The sorrow and grief of what people go through. In the last few months, I have seen so much pain. I have watched a fellow CF patient become very sick and pass away on our ward. I have read about a girl write on her blog about her CF struggles and read a few days later that she had passed away after her life long battle. During the same months I read countless blogs about couples that had been trying to have a baby and could not. Couples that had undergone their fourth, fifth, sixth IVF cycle and were just so worn out and angry after the process. Women that had miscarried....for the third time. Women and men that had lost babies, preemies that they worked so hard to bring into this world. I had also watched a good friend of mine go through the heart break of a divorce when she tried so hard to make the marriage work. So much pain, and not enough words to describe it all with clarity.

This reminds me that my pain is universal. Mine might be due to CF, and someone else's due to another affliction, but we all feel the same things. It does not change the pain, but it changed my ability to cope with it. It certainly makes me keep my self wallow in check.

When I was in my late teens/early 20s, so at least 8-10 years ago, I met a woman named S. I needed a summer job, and S hired me to help her out with her kids and in her house. Her ad mentioned that she was disabled and needed help. I liked kids, and liked helping others, and needed a summer job that really was making a difference in someones life. I did not want to work at the GAP (not that there's anything wrong with working at the GAP!!). When I met her for the interview at her house, I loved her right away, and she seemed to like me. So I got the job, and I started the next day!

Needless to say that S made quite the impression on me. I soon found out her history. She was living with Muscular Dystrophy. She was in her mid 40s, had 2 kids and a husband. S was unable to move really any part of her body. She had control over her hands, and some of her one arm. But that was pretty much it. Her way of living her life was incredible to me. I was very young then, and my CF had not brought yet it's awful realities. I feel like I have learned more from S now, then I did then. I think about her often now. We lost touch a few years ago, and I think that (after some research) she is no longer living. I think about her and what she would do during these terrible times. I remember her telling me about her life. How she was already on crutches on middle school, and a wheel chair in high school. Imagine that loss, that grief, of losing your ability to move your body piece by piece. She told me to think about what's important in life. Her husband and her kids, her community, her ability to communicate with others, her ability to laugh, and learn, and her insight that this pain has gained her. That is a gift that not many people have. She had it, and I hope that with time it is a gift that I learn how to appreciate.

There is so much hope in S's story. She was told not to try to have kids, that carrying them would kill her, that it would be a horrible mistake. But she had those two boys (that are now teens) and they were the light in her heart. She did all these wonderful things, and was even able to teach me along the way about keeping hope alive in my heart. I have to say that I have made many decisions in my life while thinking about S, how she would handle it, and what she would advise me to do.

This post is for all those out these right now facing grief, sadness, and despair. I know your pain, whatever it may be. I wish I was better right now and had the ability to do normal things. I wish I could go grocery shopping and make dinner for Martin. I wish I could take care of the house on my own, plan for my baby, plan my future in the most simplest ways. I wish I could walk, and run, and be strong for other people, not just have them be strong for me. I wish I could take care of others not just have them take care of me. These things are such losses for me. I am now back in the hospital, and will be here for a while. Today was day 1. I am thinking it will be at least 21 days, may be more, before I am back home.

The beauty of hope however, is that no one can take it away from you. You can always close your eyes and think whatever you'd like. Close your eyes and think about the things that you have, and those that you wish for and hope for. Right now, I close my eyes and I see myself walking down the street without choking or coughing or stopping. I see no oxygen. I see that freedom. I want that freedom, and have hope that it will come. Then, of course, this summer, I see the birth of my little girl, and her seeing me without all those tubes coming out of me. Just her mommy ready for her. I also see the things that I have now that are so amazing. Martin by my side, no matter what. As he is now. Funny and strong, and somehow able to make me smile no matter how hard things get. I love him very much and am very lucky to have him.

I hope that for all you bloggers out there that are facing grief and sadness and loss right now, that you gain back the hope that you need to live the life that you have been given. I certainly hope that for me.