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Heartfelt Blues

Jan 30

Posted by: ACHA
1/30/2013 2:22 PM  RssIcon

By Gwendolyn Russell

I would love to jump up and down and say that I'm a survivor who survived a major life event, exclaim to the world how my struggle has made me stronger and given me insurmountable courage, and even offer a vivid explanation of my survivor techniques. But this is not the case. Rather I sit here, a little numb, and ponder what my next treatment will be and think about the loneliness I have experienced.

Prior to my heart event, I was known by my friends and family as woman of tremendous strength—a person who requires little support and can easily pick herself up and dust herself off in a blink of an eye. But I have changed, and as I wait for the outcome of tests, I have come to know my mortality. I realize that although I feel invincible at times, I am not—I am human.

I still have that indomitable strength, but what I have usually given others—I must now save some for myself. My friends and family respond in fear and they have distanced themselves from me as they anxiously await my outcome. In my efforts to support them, I don't reach for them in my time of need and I am lonely and afraid. The experience as a heart patient is new to me. I was completely unprepared on how I would travel this journey and never in my wildest dreams did I imagine that I would be alone.

The struggle remains difficult and uncannily without much pain. But each day I encounter a somewhat new obstacle—see, today I was feeling well, then tired, and now nauseous. Believe it or not, it is the good days that I seem to struggle with emotional turmoil.

I question, how long am I going to feel this good? Will my health/heart get better? Will I continue to survive or will I deteriorate? It's my goal to live day by day. Take the day's strength and move forward, but most times my “feel good episodes” don't last a day. Then I'm reduced to living moment by moment. And people don't understand how I can be capable of feeling a rush of tremendous strength and within hours I am tired and need to relax. It makes planning activities arduous, and friends and families inpatient.

I get tired of folks minimizing my struggle to a battle of old age. Few take the time to validate my struggle, which makes me wrought with loneliness even though I'm around many friends and family. I am sure my illness scares my family; it seems that as I trudge through this heart disease my family's fear increases.

Gwendolyn Russell works full-time as a social worker. She was diagnosed with atrial septal defect (ASD) as an adult in 2008, having lived her entire life struggling with undiagnosed ASD and atrial fibrillation/flutter. Gwen has had open heart surgery to repair her ASD. Most recently, Gwen has been diagnosed with sick sinus syndrome and now proudly wears an implanted pacemaker, which she coins "Pacie."

Copyright ©2013 ACHA

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5 comment(s) so far...


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Re: Heartfelt Blues

Ms. Russell,

I also lost friends who did not seem to comprehend that this journey took a lot out of me. I was also pushed by family members who thought I should be able to take on the world when they themselves were too afraid to support me when I needed help recuperating. It is a lonely road.

I suppose the consolation is that should we have not had that indomitable strength, we likely would not have been able to press forward as everyone withdrew. I found a lot of solace, knowing how common it was that friends and family pretty much high-tailed it in times of intense crisis, to volunteer at a children's hospital. People should not be without community in times of need. I started volunteering a few months after my second surgery and have now been there for almost 3 years. It has helped me feel immeasurably better to know I could provide someone the support and validation I lacked.

I hope you find the support you deserve.

Lin

By Lin on   1/30/2013 4:23 PM
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Re: Heartfelt Blues

Dear Ms. Russell,

Thank you for your blog, it is quite moving. And I understand about the loneliness at times and the emotional feelings you are having. When I first was diagnosed at 17 1/2 years old, I felt really isolated, I felt that everyone withdrew from me. I wish then that someone would have recommended to me to go into therapy at that time. I know each person is different, but I feel it would have been helpful to me at that time.

I did eventually find my way to therapy, and it helped me voice my concerns to someone neutral, someone on my side, but also with a balanced view of the issues, and then it helped me be able to voice my concerns and fears in other ways, like writing and poetry and also speaking up to my family and friends about things too.

I feel like what my doctor once said is true: that what affects the heart also affects the mind and what affects the mind also affects the heart.

So be kind and gentle to yourself and reach out to those who you feel comfortable with talking to and who will listen to you.

And remember we are here for you!

Stephie

By Stephie on   1/31/2013 11:20 AM
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Re: Heartfelt Blues

Wonderful job Gwen!! I have met several people recently who discovered they have CHD later in their lives. What a unique and profound experience that must be. I'm so sorry that it's changed so many relationships in your life. It's so unfair that those who can walk away sometimes do - I sometimes wish we had that option.

You are among friends. We're all here for you. I really encourage you to reach-out to your local CHD community. Check with Mended Little Hearts and see if there is something near you. Maybe theres a local chapter of ACHA? At the very least I encourage you to join the online community for support. It's changed my life and I hope it does for you as well.
It's a journey and the begining of the road (no matter when it occurs in our lives) is always the hardest. YOU are TOTALLY a survivor!! Really truly! As Stephie said - treat yourself well and with kindness.

By Christy on   2/1/2013 8:56 AM
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Re: Heartfelt Blues

Hi Gwen,

I really resonate a lot with what you say. I deeply respect that you tell your journey like it is, both honoring your strengths, and saying when it's difficult that others don't know what to do with the journey your life has taken. My friend pointed me to your article, and I'm glad she did as we have a lot in common!

I too was diagnosed with an ASD as an adult in my 20s, after years of symptoms I thought were "normal." I have the tachy. arrhythmias too, which I found more troublesome, but my team was a lot more concerned when it turned out I needed a pacemaker when I was 27. I've never met anyone else with an ASD who also has sick sinus!

And like you said the anniversary of my heart surgery is coming up next week, and I never know whether to celebrate it or not! I'm grateful for the care I've gotten. Grateful to be alive, but it is a mixed experience. It is a relief to hear you say you have your good days/bad days, good moments/bad moments too. I think I know what you mean. And I love my friends and family. My friends especially have come through for me and it is a blessing. But I don't like to burden them either. It's tough sometimes.

Oh, and by the way I'm a social worker too :).

Take care,
Melissa

By Melissa on   2/5/2013 9:13 AM
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Re: Heartfelt Blues

hey ms gwen its eliza ive missed you so much i been trying to get a hold of you but it seems impossible. :{

By Eliza diaz on   3/4/2013 9:25 AM

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