Who am I? (other than a "caregiver")

Here is a “Welcome to the Caregivers” speech that I gave today at an Aphasia Day Retreat for Stroke Survivors and their Caregivers:

Good Morning—

My name is Julie Bacon, I am 34 years old, and I am married to Wayne Bacon who had a stroke 2 years ago. I usually describe myself and my role as a caregiver as defined by the events that surrounded Wayne’s stroke. Right now, I am going to try to talk about me and who I am and how I was affected by the stroke and not tell ‘his story’ (even though I feel like the description of his stroke and length of stay in the hospital, surgeries that were done to save his life, and condition in which he came home helps to define what type of caregiver I have to be and what is on my plate)… but, here is my story:

On April 1, 2008, I was a 31 year old new-mom. I had just given birth to our first child, Morgan, a girl 3 weeks prior. It was a quick and easy (so to speak) labor and delivery, and I felt empowered as a woman and a person to know what I could go through and survive. I felt more connected and interdependent with Wayne than ever before—his support during labor was amazing and I was so glad he was there by my side the whole way. Wayne and I had just bought our first home 10 months prior and were excited to have Morgan grow up a bit so we could start our renovations and landscaping plans that we envisioned when we bought the house. My family lives in Minnesota, and his in New Zealand.

My mom flew into Seattle on April 1^st to meet her new, 3-week old granddaughter. She and I had just arrived to our Shoreline home when Wayne pulled up—he just got off of work, was going to take a shower and then cook us some dinner. He never came out of the bathroom. Once the ambulance came and left, I tried to rush and get everything together to follow the ambulance but as a new mom, I didn’t know what to pack, I had only been out of the house once before with Morgan and the diaper bag and the stroller and jingling toys… I had to stop for every stoplight on Aurora and all I could think was, “Hold on Wayne… just don’t die before I get there.”

Everyone tried to convince me to sleep that night in the ICU waiting room, but I couldn’t… my best friend was lying in the ICU seemingly completely obliterated… he looked confused, not present, an empty slate—his personality seemed gone, there was no voice, no recognition, no eye contact, just wandering eyes, odd head movements, and an extremely fidgeting left side. It was so scary to me—I realized, even though I’m 31, I would never be willing to lose my best friend, spouse, partner. I envisioned myself as an 85 year old woman with Wayne in the ICU… I would be sad to say “good-bye” to him at some point. And unfortunately, I now know what that’s going to feel like.

That trauma has affected me—I don’t think I will ever be the same as I was before April 1^st 2008. I am determined to make myself better in some way, but I don’t yet know who that will be. This may sound strange, but I feel like an addict who doesn’t know themselves without their drug of choice—I don’t abuse any drugs, I’m not an addict, but I am just as lost as an addict going into rehab for the first time. I feel like I need to go to a month of inpatient counseling to just learn who I am, what I like, what type of person I want to be, and then be put back into this situation and my life.

I want to describe the pre-stroke Julie Bacon… but I feel like I can barely remember her. It is a struggle to remember me, or interactions that defined me before the stroke. The moment that helps me remember who I was before the stroke was an incident where someone was accusing me of being extremely selfish 2 months after Wayne’s stroke—it was someone that I didn’t know very well and I remember saying to them, “I’m sorry you didn’t know me before this, because I think I was a very giving, accepting, loving, patient, unconditional, energetic, full-of-laughter, and fun-loving person. If you had known me, I think you’d be able to be a bit more patient with me right now. Now is my time; now is the time, when all the love and patience and answering of 3 AM calls from crying girlfriends pays off for me… I get to have my friends hold me up for once.”

I was athletic and loved playing beach volleyball, I was vivacious, I was social yet enjoyed being alone and doing Sudoku with music playing in the background, I knew I always wanted to be a mom, I never thought I would get married but when I met Wayne I knew I couldn’t live without him being my best friend everyday forever, I took my dog to the dog park every Saturday morning at 7 AM so he could swim for an hour with not many dogs around because that’s how he preferred it, I walked around Green Lake with girlfriends, I went dancing once a month and had fun at happy hours with Wayne, I played pool and darts… I was thoughtful and methodical in my planning and decision making (that is, if I could make a decision at all… Caesar salad, soup… Caesar salad, soup? Ahhh!!!! I can’t decide!).

I also worked 50 to 60 hours a week… at the least, I always put my needs last, I worried way too much about what others thought of me or my actions and making sure that everyone else was always "okay" and felt safe, I focused too much on self-evolution and introspection and not enough on just being and accepting myself as “okay" right now at this very moment, I worried about my loved ones dying and leaving me alone, …

All of this had to go by the wayside—some of those attributes I was ready to be done with and the stroke was a definite point in time where some of those characteristics had to die. And I am grateful for that—I am glad that my work-life balance is more even, I have found peace in learning to ‘just be’ rather than push forward all the time, and I’ve realized “I’m a pretty okay person”. And I’ve somewhat lost the fear of one of my loved ones dying… I know what it feels like now, or almost. I know I will be able to deal with it and survive.

The other parts of me will come back—but only with time, and self-nurturing. One counselor told me: in order to survive and "make it" as a caregiver, I would have to delegate whatever I could to other people and return to just being a mom, a wife, and a friend again.

Why today is so important is so that we can come together, and know that we are understood and not alone in what we are going through, learn some tools and educate ourselves. The caregiver group that meets every Saturday is essential to my ‘recovery’; I have sometimes compared it to AA—I need to have somewhere to go, regularly, to find support and help.