Needless to say I am tired of being here. Really really tired. I feel really good, and run around this place, or ride my stationary bike to keep those new lungs working. I am loving the fact that I can ride that bike on and on and as my legs get tired, my lungs are no where near ready to quit. That's pretty cool I have to admit. Pretty darn cool. I get my heart rate to 156, and my SAT's (oxygen) stay at about 97% on room air. Whoaaaa. I know. My pulse is raging and my body is working and my heart and lungs can work together to exchange those gases and safely deliver them where they need to go. It's like magic. Well not really, but it is like a healthy body, or one trying to get there.
I am only starting to enjoy this recently, and I am not sure why. Why I have been so hesitant to let go and enjoy the gains of this battle that I am fighting. There are so many gains, yet I have found myself focusing on the negatives over and over. Very unlike me. Is this the new me? I don't think so, but the change that I do feel is profound. May be one day I will get it, may be this is just part of the healing and it will go away, or may be it will just be like it is now. What I am mainly talking about, is fear and anxiety. In that specific order in fact.
Recently I have been speaking to a spiritual counsellor here at TGH. I did not want to speak to a priest (I already know to pray, thanks) or a psychiatrist (I don't need meds nor a quick fix) I just wanted someone to speak to that would listen and, if I am so lucky, give me some insight and may be a book. I was lucky when I met Derek, I got both. We spoke about my being tired of being sick. of a need for a break, for me and my whole family. We also spoke about death, mortality, those thoughts that creep up here and there post transplant. Normal thoughts he said. I'm sure, of course, normal, but this kind of normal is still a difficult one to live with.
The book I got to read is Swamplands of the Soul - New Life in Dismal Places by James Hollis. The chapters are divided by emotions, which I really like. I opened up to fear and anxiety right away, and just found it so right on, that I was more and more pleased with myself that I found my way onto Derek's office door step. One of the fundamental questions in that chapter: ...why, then, in the midst of something wondrous and transcendent, would one feel this undercurrent, this pull down into a dismal swampland? Good question. Why is it, that I am doing so much better than I have in years, had the gift of life given to me at the last possible moment, when my life was seemingly expired, why after all these gifts am I riddled with anxiety and panic.
As the process unfolds, my transplant journey I guess it can be called, this anxiety and panic is getting better. As I improve and find more and more of my old self within this new one, I feel it's easier to cope, and not only that I find myself having to cope less. What does James Hollis say? It seems like the only antidote, the only way out he says is to face these fears and anxieties head on. He quotes a poem by M.Truman Cooper that I love so much, it's so simple yet it explains it all to me:
Suppose that what you fear
could be trapped,
and held in Paris.
Then you would have
the courage to go
everywhere in the world.
All the directions of the compass
open to you,
except the degrees east or west
of true north
that lead to Paris.
Still, you wouldn't dare
put your toes
smack dab on the city limit line.
You're not really willing
to stand on a mountainside
miles away,
and watch the Paris lights
come up at night.
Just to be on the safe side,
you decide to stay completely
out of France.
But then danger seems too close
even to those boundaries,
and you feel
the timid part of you
covering the whole globe again.
You need the kind of friend
who learns your secret and says,
"See Paris first."
I'm not sure what answers I got from this poem, and from these chapters and from this book. But I certainly understand that after the experience I have had, so different and unique to my life thus far, fear and anxiety is the norm. I have the choice each day, at this point in my recovery to face depression or face anxiety. Nice choice huh? But that is exactly how I feel. When I sit back and feel helpless I get depressed. When I move forward and onwards, I get anxious as I have to face the unknown. But there seems to be progress. One last quote to bore you guys, that I really liked, and made me think: "Anxiety is the price of a ticket on the journey of life; no ticket - no journey; no journey - no life" Somehow this explains it all to me. Suddenly. What it says to me, it's all worth it.
Enough of the psycho babble, I think I've bored you all by now. Today has been a great day. Everything looks good for going home tomorrow (Thursday 21st). This I am thrilled about. The other amazing news, that has me and my family thrilled, is that my lung function this morning was 63%, 2.3 L. Only a week or so ago it was 48%. This change is incredible for me to see. It is encouraging, and has me really motivated to see how much more it will rise and how quickly. It is certainly the kind of news that you want to hear.
My mom and dad, proud grandparents, with Scarlett (now 6 months) and Sophie (now 2 months) on Christmas day in the Atrium of TGH.
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13 comments:
So good to hear from you Natalia! Such profound thoughts. It's wonderful that you met Derek! He sounds like a wonderful person and a terrific "resource." You came so close to the brink that it had to have changed you. "Psychobabble" or not, there were things that happened when you were fully aware and also when you weren't conscious. Spirit, soul, mind, will, body, and emotions are impacted by such experiences.
I know God will keep strengthening your body, enlightening your spirit, touching your soul, healing your mind, easing your emotions and fortifying your incredible will. We can't measure all these parts of ourselves like we can calculate lung function, heart rate, etc.
You continue to be an incredible inspiration as you INSPIRE..you breathe life into all around you!
If you want another source of inspiration, please check the blog of Sara ("Gitz"). She's homebound with serious medical concerns but full of life and powerful, joyful insights.
http://gitzengirl.blogspot.com/
Weds. Jan. 20 she answers a reader's question about her prayer life. It's wonderful and her readers have some pretty cool comments as well.
"I pray that God, who gives peace, will make you completely holy. And may your spirit, soul, and body be kept healthy and faultless until our Lord Jesus Christ returns."
I Thessalonians 5:23
Contemporary English Version (CEV)
p.s. The girls look adorable and your parents look so happy to have their arms full of baby joy!
Natalia,
This is amazing. What you are going through is all normal. Anxiety and fear are normal when you don't remember things and when memories come back to you from what you have been through. It's been a lot and a lot to take in. Take your time and what you have said in your post is very true and honest. Let yourself feel this and don't try to put on a brave face if you don't feel like it. Nobody would be surprised. your body, mind and spirit have been through so much.
I loved that post. You're so honest and you express yourself so well.
I haven't faced a transplant, but I have been at death's door with my old ticker, and I understand the emotions you're talking about.
I think the fear is related to loving life, not being scared of it. It's like, you feel so lucky and blessed to be given a second chance, what if it doesn't last? That's how I felt anyway.
Now, like you, I try to focus on reaching my physical potential. Facing my limitations and trying to push them outwards. I swim. I swim and I think and I meditate. I'll never be a fast swimmer, but I am a devoted one.
:)
The visualisation of fear as Paris is breathtaking. I love it. So powerful. Sounds like a great book. Keep reading and sharing the best bits!!
xxx
Dear Natalia,
You are so courageous. Your honesty is so beautiful. Take each day, each moment, as it is...know that you are loved so deeply and that you are never, ever alone.
I am so pumped up about your lung function Nat. You are doing awesome! Keep on pushin' girl - let's see that number rise!
Glad to hear you're doing so well and slated to go home tomorrow! Congrats on finding Derek.
Easily my favorite post sis. I had the pleasure of speaking with Derek as well when you were in the ICU waiting for those lungs. Things were not good, yet Derek really helped me that day.
I love your posts! It is ok to feel negative in the early stages, but I am glad you are able to start letting go and enjoying your new lungs! The early days are hard (and my experience was not nearly as hard as yours, but I had a hard first month, month and a half). I am excited to see YOU excited! Can't wait to hear that you are home! Keep on that bike girl!
Natalia
thanks for the name of the book and I am going to try to find it for my son who has CF and has been having a tough time lately. The Truman Copote quote and the other one are just what he needs to hear and I will be sending them on. I tried to say something similar to him tonight, but what I read in your blog is more profound and gets the point across much better than anything I can say. Did the anti's work? Sounds like they must have if you can do that much work on the bike. Great FEV 1. Keep it climbing.
Linda in Louisiana
I am so glad that you found someone to speak too. I went through a major trauma a couple years ago and the resulting anxiety (even though I should have been thrilled to just be a live) was overwhelming and all consuming. It took time. It's still there and I guess I'm learning that it always will be...I can't turn back time to before the event. But that's okay. I too think of it as a small price to pay (although some days it seems large not small) to be here. I'm so proud of you. What a journey..an incredible one. Be patient and kind to yourself...time will heal. It's all normal. Hugs Lisa L.
Derek helped me immensely during my recovery as well. Trevor.
Natalia,
Its so good to hear about your lung function and I am glad that you have Derek who can listen well to you about your fears and anxiety. Your process of dealing with the journey makes me really think hard as I try to understand what you are saying. Your journey was SO difficult and the truth of how difficult it really was may be very heavy and overwhelm with fear/anxiety, and you have every reason to have lost some faith in the human experience.........yet you are so grateful and that is AMAZING! Wow Natalia. Thank you for sharing, it is so profound.
Bless you,
Kerry
I'm super happy you found someone who can listen and guide you through this whirlwind of emotions. Derek sounds like a good man, and that book sounds like a good book.
There are no easy anwsers or quick fixes to emotions. Just time, reflection and building a new history, a history of having healthy lungs will help, one day at a time. Don't deny your emotions, usually when you try to bury them they just keep coming back, but seek to work through them and allow yourself to feel.
It's great to hear about your lung function, set your thoughts on the big picture, the picture of being healthy.
You cannot change the past, not look into the future, you can only be in the moment. And through that moment, that present, you will create a new history which will help to give you a better sense of security.
Hugs Nat, life is becomming more and more normal as each day passes. You started out going into to the hospital occasionally, then more frequently to staying, now you've heading in the other direction, back to the occasional hospital trip, until eventually it will be few and far between.
Your doing so great, I'm so very very proud of you!
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