It was a long time coming and I’m not sure when it happened. I don’t miss me anymore. This is a strange thing to say but I know the frightening feeling that comes from loosing my sense of who I am. I know the sadness that comes from not believing there is enough left of me because of the changes in my life due to contracting a chronic condition. I really did miss me – but not any more.
Those of you who have been following my blog for a while know it was originally named “I Miss Me, Too” because that was what I wanted the title of my book – the one that I’m not writing any more – to be called. Here is what I wrote on my ‘About This Blog’ page when I started blogging. It explains how I came up with the title.
One day during that first year after being diagnosed, I was in the kitchen with my husband of 40 years. He stopped working, looked at me, and said that he knew I couldn’t help it but he missed me. He had tears in his eyes. My eyes welled up and I said, “I miss me, too.” We embraced and cried together.
I feel like I turned a corner, when I stopped missing me. How many times have I said that? Whenever I started a new computer file for my journals, the first entry begins “I feel like I have turned a corner.” There are 10 files of journals that cover 8 years – so ten times I had turned a corner. I guess you could say I’ve been around the block a few times. This seems to be my way of explaining that I made a leap of progress towards my emotional and physical healing each of those ten times – now eleven.
Those leaps of emotional healing didn’t happen suddenly. It was more like a long slow, continuous process and what happened was that suddenly I realized that I felt different. Change takes a lot of work. We have to have a vision of what we want, and maybe observe others and think about what we would like to be, and we need to practice actually being like our new vision. Sometimes we need to look at our pasts, confront old ghosts, heal old wounds, let go. Sometimes we need to acknowledge our sadness and anger. It takes conscious effort and courage and perseverance. I have been working on it for nine years so far – taking many small steps and spending lots of time on plateaus where I prepare for my next step.
I began to feel the shift to feeling more whole when I started my blog and became a part of the blogging community. Focusing on how to use a new camera and learning how to take interesting photographs allowed me to connect with a long neglected part of myself. Blogging gave me a platform for sharing the emotional turmoil of having fibromyalgia by posting rewrites of portions of my not-to-be-published book.
Writing for the blogging community was much more rewarding than writing for publishing and thus brought a dynamic, evolving meaning back into my life. My focus began to shift from sharing my illness to wanting to share the life I was living – through photography and story. I discovered that I could touch people’s lives and my life was enriched through the life stories of others. It feels like I am on a shared journey of life that is being recorded through our blogging.
The second event that seemed to give me a new sense of self was the long camping trip to Newfoundland. This trip shifted life for both me and my husband. A while after I was diagnosed, we were talking and he went into that funny mood that says he is thinking about something that needs to be said but he doesn’t want to say it. He finally confessed that he was feeling guilty because he believed I got sick because he “dragging me” on a three-week camping trip to the Canadian Rockies. It is true that I started having symptoms about 6 weeks later – but proximity doesn’t prove causation. He let go of the guilt but still had to live with the fact that our life was changed.
Lake Louise (Photo credit: Wikipedia)
Our trip to the Canadian Rockies was the last traveling camping trip that we had taken and the trip to Newfoundland was similar in length and work. I had some anxiety about doing the trip but I really wanted to go and knew how to prepare. He had a lot of anxiety because he feared I would get really sick a long way from home or wouldn’t be able to participate in our travel activities. After we returned, he told me that he was really surprised that I had done as well as I had. Our eyes connected and he said that it felt really good to have me back.
I guess I am back. I’m not the same because we both know that we had to do things to take care of me – but I was alive and vibrant and involved on the trip. I worked along side of him and carried my half of the work load – almost and most of the time. It was similar to our Canadian Rockies trip, but I was different. We have adjusted to the changes in me so I can be like I used to be; even though I’m not. Maybe we don’t remember what I used to be like, but he isn’t either. In any case, we have found a way to live life fully, together, that is rewarding for both of us.
This triggers silent tears because it was hard and it wasn’t always clear that it would happen. I spent a day or two feeling sorry for myself. Not in a bad way as I would if I felt like a victim. No, I felt sorry for myself as I would feel towards someone who had gone through a really rough time. I felt sympathy and compassion towards myself. I feel compassion and love for my husband who had to endure all that I have been through but didn’t always know how to handle it. But then neither did I. It was scary and hard.
I have read a lot about grief but I have never seen anything written about the grief we feel after going through a time of healing. When I was a therapist I frequently would sit and listen to people express their joy after making changes in how they thought and felt and the big difference it was making in their life. Then they would grow quiet and their eyes would get glassy. I knew at that moment they needed to lick their wounds – they were remembering how hard it had been, how hard they had worked, how much pain they had felt as they went through the healing process. I am feeling that way.
At the same time, in a strange way, a hard to define way, I am afraid of stepping into the future. I had learned how to live with my emotional pain and sadness. I had gotten used to not knowing who I was. I had adjusted to not being able to do a lot and my husband didn’t expect me to be able to do most things. What if he forgets that I have limitations? What if he expects more from me than I can deliver? What if this living life fully, together, doesn’t last?
Can I maintain whatever it is that I’ve found – forever? I need to remember that this is a new day – singular. All I have to do is live today. I planned for my tomorrows, but none of my futures were improved by feeling anxious about them. I can plan for tomorrow, but I need to live today.
On this new day I may experience pain and fatigue and not be able to do much of anything. On this new day I may have lots of energy and be excited about the work and play I have planned. I am still overdoing on good days, and still paying for it with a day or two of not feeling well. I know how to take care of myself and I’m usually satisfied with moderation but also willing to pay the price for pushing the boundaries.
I have found ways to exercise my brain and body. I have found multiple communities in which I can nurture and be nurtured. My husband and I have settled into a fun and comfortable relationship. I can face my God and see her smiling at me. I don’t miss me any more because I have found a way to live that has integrity.
If you have written a post that expresses similar themes, please leave us a link in a comment. I would love to have us connect in this way.
A New Day: Living Life Almost Gracefully 
i am in tears now….. for you, for myself, for many others out there that have experienced something similar… not an easy trip. but rewarding….. all the time. teaches us to appreciate all small steps….. you have touched a lot of others’s hearts and lives… and will be doing it even more in future. i sometimes think this is even more therapy work than doing the physical therapy itself….
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C, thank you so much for your kind words. I have learned so much because of life’s hard knock and made it my life work to help others – in what turned out to be a variety of ways. Blogging is the way I can do it now and it feels so very right. I have used physical therapy several times, and my relationship with my therapist helped as much as his knowledge, technique and skill. I appreciate your support.
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Hi Pat, I had chronic fatigue and fibromyalgia for over 2 years (2009-2011) but consider myself to be in recovery now. I put the improvement down to changing my diet and lifestyle, pacing, herbal supplements, meditation and most important of all – following my joy. All the best. I agree about the camera being a fabulous tool for positive life changes. 🙂
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Good for you! I do believe it is possible to tame it and lead a fulfilling life – unless there are other complicating factors. I am so happy that you found the combination that worked for you – it does take work and determination.
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Hi Pat,
You are so genuine, and you express it so well, Pat, that we are right alongside of you, every step of the way. This is the book you should be writing–taking your life back, the road back to inner peace, learning to rewrite your own theme song.
At a conference I picked up a book –Blog Your Book, or something to that effect. It was about pulling essays from your blog into a book for publication. My blog is all over the place–more stream of consciousness–but yours is a journey with a strong theme and you have the writing skills to be able to pull it off. I think you would have an audience.
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I’m keeping that in mind, Naomi. I am not writing with that as the goal but am very open to making it happen if I continue to want to write these kinds of posts and write enough of them. Anything I do has to hang together and have logical integrity so that will also be a factor. Thanks for sharing your impression – it is really helpful.
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🙂
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Pat, this is such an eloquent and inspiring piece. Thank you for sharing this leg of your journey with us. I am so glad that you have found a place of peace, but also a resolution to live your life to the fullest.
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Yes! you have summarized it very well, Naomi. We have found a place of peace – it was there yesterday and I feel it today. And thank you for the kind feedback. I work really hard on this type of post – writing well sure in hard work. And there is always some anxiety when posting a piece that is so much of me. Being that transparent makes me feel vulnerable but I have found it is the only way to reach out and connect with people in meaningful ways. In the end they are my most rewarding posts.
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Such a heartfelt and inspiring post Pat. So glad to hear that you have rounded a corner and are in a much better place. 🙂
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Thanks, LuAnn.
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You have come a long way, Pat, and you have my utmost admiration for this insightful and inspirational post. So much harder sometimes for someone in a helping profession position to have the courage to seek help, but then, we are all human, and it is the human spirit that gives use strength to adapt, regardless. Enjoy today!
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So true! Thanks for your kind words. I believe that one of the most important personality traits is resiliency or, as you put it, adaptability. I have a post on resiliency floating around in my brain.
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This should be interesting. I do psychological work too. Over the span of my career, I have seen very high functioning people who cannot pick themselves up after an accident. I think another personality trait, or attitude rather is at work, and it is whether or not the person is able to feel grateful for what he or she has and the progress made at every stage.
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Interesting. This makes sense to me because progress is slow and it requires rejoicing in each little step forward. Do you think it has to do those who always focus on the half empty part of the glass vs. those who focus on the half full? My glass has almost never been below half full and when I have perceived it to be below half full, I am one unhappy woman. How horrible to always be there.
Of course this means that I frequently come close to running out of gas because my car is always perceived to be half full, too. 🙂 A sure sign on not being in touch with reality.
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I agree with this half of the glass analogy, and it means that it is a choice the individual can make to see it as half full or half empty.
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Thanks for showing an interest in this discussion. 🙂
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So happy for you Pat! Thank you for such an inspiring post 🙂
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I hope that my daughter and I can come to a similar feeling – somewhere down the track..
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So do I. Having a chronic illness that changes who we are also changes how others relate to us. Most of my friends were sensitive but okay with the changes that happened to me. I struggled a lot with feeling like damaged goods that noone could possibly love. I also had a lot of conflicts over letting people help me. Lots of land mines. 🙂 I really hope you will both be able to find a way.
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Thank you Pat. The first hurdle is getting her through this acute phase..and we need to deal with acceptance x
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I AM NOT Anonymous. I am me and I posted the above. 🙂
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I am delighted you are back. I am into that journey now and hope I can work through the pain to the joy of being me. Blessings and thanks much for sharing your reflections, thoughts, and emotions. Luv ya!
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Aw thanks. What encouraging words you have written. I know how hard your journey is but you can make it. I am confident that you haven’t lost all of who you are but it is painful to lose what you have. I hope you will stay in contact with me and let me know as you find the pieces of who you are.
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I identified with a lot of what you had to say in this post. I haven’t blogged about it (so I can’t give you a link), but my path is similar to yours. I’m so happy for you!
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Thank you so much. And I think the road is easier to traverse when we have some hands to hold. Thanks for putting your’s out there for me to hold.
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Oh Pat, what a beautiful and encouraging post. As I was reading your post, I was thinking I know what she means, I understand. It’s hard not being able to do what you use to do. Feel the way you use to feel. Change and adjustment is hard, but possible. Your life and struggles are a positive influence to others who have to overcome or live with a chronic illness. Thank you for sharing and welcome to your new day!
BE ENCOURAGED! BE BLESSED!
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Thank you, Francine, for your very king words and especially for wanting to share my new day with me. I consider you an important part of my blogging community.
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Thank you for this beautiful and insightful post. I want to be YOU! I have been living with chronic pain for almost 3 years and I miss me, too! You are now my role model and I hope that I can find the happy in my life as you have found yours.
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I know where you are and my heart goes out to you. Find happy moments where you can and keep me posted on how you are doing.
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Thank you, Pat. I will try very hard to find those happy moments. It’s so much easier when you know that there is some one out there that understands.
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Good for you Pat!
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Thanks, Georgia. I am so very happy.
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