“ Trust your heart and your gut when it comes to how much you can do and how soon!
Stacey Callaway is our latest mAss Kicker hailing from Texas. Stacey’s passion for learning and using her brain even after brain surgery resulted in her earning her Ph.D. This is one dedicated individual! Her gratitude and attitude have been instrumental in bringing her this far in her recovery. Thanks Stacey for taking the time to share your journey with us.
mK: How did you find out about your diagnosis?
SC: Originally, I didn’t think there was anything wrong. However, when I would look directly at someone, there was a grey spot over his or her left shoulder. I really didn’t think much about it…perhaps my Lasik needed “tweaking.” I ignored it for a couple of weeks…then a friend insisted I go to the ER. While at the ER, the doctors all said it sounded like a retina problem, rather than a brain issue….which I really hadn’t thought about. A brain issue? No way! I was able to get into a retina specialist who shared that my eye was beautiful, with nothing wrong! However, he wanted to look at my optic nerve. (This is when it started getting a little scary.) I have fibromyalgia and those symptoms and my eye symptoms; he was looking at Multiple Sclerosis…which scared me to death. I was convinced I had MS.
I had the MRI done on a Thursday morning, took the rest of the day off, and then ran some errands with a friend. That’s when I got the call. A direct call from the Retina Specialist. “Stacey….your optic nerve is fine…it’s beautiful..and that’s good. However, you have a Colloid Cyst on the 3rd ventricle of your brain and we need to get you to a neurosurgeon as soon as possible.” Me: “Wait…can you say that again?” He told me what he knew about it, I wrote all of this down on the back of my friends business card, and, well, I just continued shopping. I had a neurologist, so I figured I’d call him and he’d get me going in the right direction. The retina specialist assured me that he knew the best of the best and could get me in with them, SOON! I agreed to let him manage that. I trusted him. What did I know about brain surgery, really?? Met with the neurosurgeon 4 days later and my surgery was scheduled 10 days after diagnosis. They were very anxious to get “Ima” (that’s what we called her) out very quickly.
We finished shopping, and then went to my car. I called my best friend and asked her to “google” Colloid Cyst for me (this was 10 years ago). Her response was, “I’m going to let you read this when you get home….you know…so that you can get a better grip on it.” This is when it hit me. This is when I cried. If Kellie thought it was “too big” for me at that moment, there must be more to this story. Big sigh….little did I know what lie ahead!
mK: What were your symptoms?
SC: Other than the grey spot, I had some sensitivity to light (which I blamed on my fibromyalgia) and some headaches (which I blamed on seasonal allergies)…and that was it! Nothing…I was asymptomatic, for the most part. Never saw it coming.
mK: Are you involved with any organizations? If you are, what do you do?
If you aren’t at this stage, are there any that you would like to get involved with and why?
SC: There is a brain tumor walk, with the American Brain Tumor Association, that comes through DFW every year and I’ve participated in two of them. Each time rounding up Texas & Oklahoma survivors! It’s so amazing to stand eyeball to eyeball with someone who has been through it! It’s also humbling to see the families and friends who are walking for their family member who didn’t make it. I am blessed…..and will keep walking this walk every year!
mK: What motivates you?
SC: Post surgery, I needed to know that my brain still worked, so I went back to school! 7 long years later I finished my PhD in autism studies! So, I guess you can say that my deficiencies motivated me. The memory loss, the fact that I was so disorganized, and the fact that it might not work…that’s what motivated me.
mK: Who is your personal hero or are your heroes?
SC:.Oh goodness…as a special educator, and now someone with an acquired brain injury, folks like Temple Grandin, Stephen Hawking, and others with disabilities who live full lives both because of and in spite of their disabilities…they motivate me.
mK: What makes you laugh, cry, angry?
SC:. I think the hardest thing for me, related to the surgery and the cyst, has been trying to help new people who come into my life understand that I’m not just forgetting things because I’m irresponsible, or that I don’t care. This brought me to tears many times in new relationships….both personal and at work. It’s hard…very hard. It’s something we have all learned from. However, it also gives me reason to laugh! I am the queen of laughing at myself! I absolutely love to laugh. I named my cyst, “Ima”…as in “Ima not a tumor” “Ima Outtahere” etc. We made lots of jokes about that! Really, if it weren’t for my friends and the laughter we generated in those 10 days, I don’t know if I would have made it! Angry…not much. I never really was angry during the process. Everything seemed so far out of my control, I had to just say a little prayer and hope that God and the Doctor had an open line of communication! But anger, that’s just not in my nature and I felt like anger would create an energy that I didn’t need at the time! Now…sometimes I get angry when I forget things that I know I should remember….but I guess that’s really more frustration than anger.
mK: What would you say is the most interesting thing you’ve ever done?
SC: Oh wow….I think being a brain surgery survivor is pretty interesting! It’s always fun to go to a new doctor and he is reviewing all of your previous surgeries and medical history. They always stop, read brain surgery, then ask the questions. Always.
I work in the field of special education, and now feel like I have a little insider information when parents talk about their kid’s challenges. I also got my PhD in Autism Research, which I think is pretty interesting and certainly not something many of my friends have done! And I love to talk about autism! I’ve spoken at local, state and national conferences! Oh, and I was on the Rosie O’Donnell show! Ha!
mK: What is the toughest challenge a survivor faces?
SC: Getting to your car and remembering that you forgot something, then going back inside to get said item, then realizing you don’t remember what you went inside for, then going back to your car to “reset” the process and still not remembering! That’s so frustrating! It has brought me to tears a couple of times. For me, if this is my toughest challenge, I’m lucky. I’m blessed.
mK: What is your guilty pleasure?
SC: Oh, I love a good margarita! I remember asking my surgeon how long I had to wait before I could have one…and I’m certain I probably didn’t wait that long! Teehee! Don’t tell my Mom! ☺
mK: What is next on your agenda?
SC: Oh wow, I truly feel like I lived a lifetime in the past 10 years…since my surgery. I’ve hit the pinnacle of my educational career. I’ve gotten married and gained 2 amazing children out of the deal. I really don’t know. I have a children’s book about autism that I need to get published, so I guess that’s probably next on my agenda! Theoretically, I can retire in about 7 years, which I cannot imagine doing any time soon, but if I did, I look forward to teach teachers at the University level.
mK: Any advice for people or loved ones that get daunting diagnoses?
SC: Write down everything! Have a journal…electronic or hand written. I have a few notes here and there, and some emails, but write it all down. I wish I knew which visitors came on which day. Who sent what? And just general feelings and emotions as they hit me…literally! Lastly, pray and pray hard! That was my mantra and it was all I asked for from my friends. When new people come into our little Facebook CC family, that’s the first thing I say…pray and pray hard!
mK: Tell us something about yourself that people probably didn’t know… anything.
SC: Hmmm…I’m pretty much an open book! I love to fish! I love to fish anywhere! I’m just as happy fishing on the side of a small neighborhood pond, catching little tiny sun perch, as I am deep sea fishing and catching giant Mahi Mahi! There’s just something relaxing about fishing that I completely enjoy!
mK: What is your favorite song and why?
SC: I don’t know about favorite song…but my “brain surgery song” was “Bad Day” by Daniel Powter. My favorite….would have to be “Wide Open Spaces”…the Dixie Chicks sing the song, but my friend Susan Gibson wrote the song and there is so much hope in that song! The inspiration that is inherent in that song motivates me and gives me hope of what the future holds!
mK: Any parting words for all the mAss Kickers?
SC: You will make it through this! It’s going to be ok! Trust your heart and your gut when it comes to how much you can do and how soon! Don’t push it..the brain heals on it’s own timeline and everyone is different! God speed!
Stacey Callaway: PhD wizard, passionate autism advocate, waiting-in-the wings author, wife, mom, part-time fisher and brain tumor survivor with a gratitude attitude!
Thanks again for connecting with us and sharing your thoughts!