It’s about the journey, not the destination…it’s about the journey, not the destination…this is what I constantly must tell myself and you should remind yourself of this too.
Hello beautiful people!
Let’s talk about my journey with what I like to consider stage two of my recovery from my brain injury. If this is your first time here…. WELCOME…I am so appreciative of you taking the time to read about my story. If you missed stage one and need to get caught up, you can read about it here.
This stage was TOUGH! Stage one, I really wasn’t aware of what was going on so I had to deal more with the aftermath of that and understanding the details of what happened to me. This stage I was aware of EVERYTHING…I mean EVERYTHING. I have to remind myself that this is my journey and my story to tell. These are my experiences and mine only. What I have learned through this process is that when you become sick, like really sick, you can easily lose the ability to narrate your own story. That sounds crazy right!?! But it’s true! People talk, people have opinions, people, people, people…. I have felt everything from overwhelmed with love to depleted and lonely. I got to a point where I didn’t want to share a thing about my progress. I am going to be honest, there’s an unconscious insensitivity that happens with people who are dealing with a condition. I feel I should be honest because someone out there may be reading this and going through these emotions or maybe you are a caregiver and you’re trying to figure out why the person you are taking care of is getting so frustrated. I was a caregiver to someone who was important in my life, at the time, in my early twenties and I could not understand why that person seemed so ungrateful at times, or angry, or anxious…now I get it. As a caregiver, friend, spouse, parent, sibling, etc. you will never understand the depth of what the person with the condition is going through because you are not living it.
Doctor days are tough for me. They are a reminder that I have a condition. I am poked and prodded, told so much information that my head is spinning, and that takes a mental toll. I remember the day I had to have 3 test done. I had a CT scan, an MRI, and I had to get my radiation mask made. I remember how dismissed I felt by some people because the tone of the conversation was, that’s not a big deal, people get CT scans or MRI’s done all the time. I almost had a panic attack getting my MRI done. You must remember; they’re scanning my brain. My head was planked between two, very tight boards so they could get a precise scan. I was in the machine for about 45 mins…in and out…in and out…in and out of this very loud machine. All different kind of things were running through my mind. How was I just a healthy, lively person in August and now I have a neurosurgeon and an oncologist? How I am now familiar with terms like brain surgery and arteriograms because I have had them both. Will I be able to think clearly and be myself?
I remember the day I met with oncologist and he was describing to my parents and me the radiation process. He said DO NOT get pregnant in the next year. Now…I, in no way, have or had ANY plans on getting pregnant ANY time soon but the moment he said that, my ovaries went into overdrive lol! It’s like when you tell a kid not to touch a hot stove and then they immediately want to touch a hot stove. I watched 15k YouTube videos that night on natural births, what’s in my diaper bag videos, pregnant mommy tips, you name it, I watched it for like a week! If you read my blog, expect me to be honest and real. This is what I did and I am not ashamed of it. It’s something about being told as a woman, that you can’t have kids. Although I understand that this is temporary, it struck me in a way that I would’ve never expected. He also told me I may lose some hair, yes, from radiation…again, it’s my brain. He talked about stroke potential and the increase in the chances of me getting cancer.
This. Is. A lot. Of. Ish. To. Take. In.
I remember looking at my parents and although they have been my rocks, that conversation hit them hard. I tell you this because I have been guilty of being insensitive in the past. When you know better, you do better. Be kind with your words. Don’t assume just because someone you know has gone through a similar situation doesn’t mean that the person you are speaking to will have that same experience…That’s all I’m saying. Simply show that you genuinely care. If someone trusts you enough with their fears, their appointments, their surgery dates, or whatever…handle that information with care.
So, in December I had an arteriogram. As I laid on the bed, I had the, “Ashley you are really messed up” moment. It was at least 8 people in the room. I had someone introduce themselves as my physicist. I had to have a physicist because the coordinates needed to very precise for my radiation because my tangle (what caused my brain bleed) is very deep in my brain and close to my spinal cord. There was the a prepping my right leg where they would enter my groin, the medicine guy on my right, the sista that stopped them from messing up my pressed-out hair when they put my radiation mask on. Shout out to you girl! I needed that to last at LEAST 2 weeks lol! Curly hair and a tight radiation mask don’t mesh well okay! From the many people in the room, to the people behind the screen (think Grey’s Anatomy style when they stand up there and look in awe at a rare surgery they all want to jump in on) and the 6-big screen TVs with my brain pics on them…this was the moment I realized how serious things were. Luckily, I didn’t have long to ponder…the nurse said, Dr. Spooner is ready Ashley (I seriously could have been in a Grey’s episode) and the meds kicked in…and ya girl was out for the count.
Fast forward to February 6th, I had radiation. As I am typing this, it’s about 2 days since I had it. I am tired. I told my best friend that I am like an 80-year-old woman. I do something for 20 mins and I must lay down. I know I’ve had radiation too. I wasn’t really expecting to feel it after. I know my brain is swollen. I can feel it. I’m grateful for the steroids although they make me hungry as hell. Last week, I went to pick up my meds in preparation for my radiation this week and had an impromptu appointment with my oncologist. I knew that the radiation treatment would scar over my tangled coils over a long period. I was told 5-8 years. Yes, YEARS. What I didn’t quite understand was that I am still at a high risk for a bleed for the next 2 years. Fewer than 200,000 people have an AVM in the brain so the fact that I EVEN have this is rare. Radiation as most of us know it, it used for cancer patients. My doctor only does the type of radiation I had about 2 times a year. 2 times a year. The best part of radiation is that I got to take my own CD (yep, CD) in with me to listen to so that I could remain calm. I chose Kirk Franklin’s Song for the Storm album. I fell asleep to He’ll Take the Pain Away. But knowing that album was playing in the background gave me a peace that’s indescribable.
This is a lot of information, trust me, I know.
Here are some key life lessons I’ve learned so far from this:
- Be aware of your perspective and be careful to not project your perspective onto others. We all see life through our own lens and experiences but be aware that everyone doesn’t see things your way. I have found that I get really, irritated, borderline mad when people tell me I look great…or you could never tell anything happened to you. Now, you are probably thinking, Ashley, you should take that as a compliment. Let me put this caveat in here, I KNOW people don’t mean any harm when they say this to me BUT we are talking about perspective right. Here’s my perspective, the day I had a bleed, I felt GREAT! I showed no symptoms of anything being wrong so hearing I look great is somewhat a trigger for me. I secretly freak out in the inside a little. I know it sounds crazy but I would have much rather had SOME symptoms. Again, my perspective. I am not going to go off on anyone if they say that but, I feel some type of way and that’s just my truth.
- Support is important…ASK for it if you need it. I am stubborn. 9/10 times I think I can do something better, more quickly, with more efficiency than anyone else. This isn’t about me putting myself on a pedestal, it’s about me HATING to ask people for help. Part of it is I don’t want to inconvenience people and the other part is I rather do it myself so I know it will get done. I have humbled myself. I am a particular person okay…geesh…I know you’re judging me. If I am burnt out, I used to expect the people around me to take note and pitch in to help. That rarely happen. People can’t read my mind. I am practicing asking for support. How do you get what you want? You ASK! I am no longer assuming people know what I need. I tell them.
- Use your words! Talk, learn to communicate…stop pouting, giving the silent treatment, ghosting folks, cutting them off…speak.
- It is okay to not be okay. I have always considered myself to be very strong. I feel like it is in my DNA as a black woman to be strong, to carry the weight of the world on my shoulders, to take the hit and keep it moving. There is something so beautiful about being a strong, black woman. We encourage our friends, comfort our babies, pray and intercede on the behalf of our men…we make sure our family is good. Period. But what about us? I have learned that as much as there is beauty in our strength, there is so much more beauty in our vulnerability. Tears are okay, anger is okay, sadness is okay, being overwhelmed is okay. It is OKAY. You can feel these things and recognize them for what they are…then move on. I’ve learned that by acknowledging what’s not okay in my life, I have become stronger. I give those things a name and deal with them. It’s like if you call a thing a thing, you take back your power. I don’t know if that make sense but I hope it does.
- Lastly, I have learned to truly have faith. There are so many unknowns in life. I have had to surrender to my need to control every aspect of my life. One day I was at home cleaning. Saturday mornings growing up, I KNEW we were going to have to clean if my mama turned on some gospel music and I heard my daddy mowing the grass. Ugh! I tried to pretend like I was sleep (my parents claim I have a special skill set called playing possum…said I came out the womb pretending like I was l sleep lol). Now, I find comfort in turning on my gospel music on a Saturday morning and cleaning my house. One day, I grab the vacuum cleaner, got ready to turn it on, and More than Anything comes on by Lamar Campbell and Sprit of Praise. I dropped to my knees. At this point, I hadn’t released my anger, sadness, sense of overwhelm, or my pure pissed offness (I know that’s not a word) that I had a brain bleed. See #4. I was trying to hold onto the notion that I was okay and that God never puts more on us than we can bear, blah, blah, blah. Yea. At that moment, ALL the emotion in me came out. I cried and rocked myself like a BABY. But if you know this song, it’s a song about surrendering yourself to God. I needed to let those things out of me but I realized that although I was going through something, I had to PRAISE him in the midst. I shouted in my living room because the next song that came on was Order My Steps. God was talking to me through these songs. It was an amazing feeling to know that if I keep the FAITH, everything will be okay. Faith is the substance of things hoped for, the evidence of things not seen.
To wrap it up, I have many more CT scans, arteriograms, and MRI’s to go in my life. I am on first name basis with nurses in both my neurosurgeon and oncologist offices. These people will be in my life for a long time and I am working every day to accept that fact. An AVM will not define me but it has given me a fresh look on life. My memories are coming back…some good…some I wish could’ve stayed where they were but that’s life. I will not be a victim but I will also not pretend like everything is okay when it’s not. I have to live my life. Do I freak out if I get a headache, yes. If it’s severe I know I must go to the ER immediately but I can’t allow myself to live in fear. I encourage you to choose to live. Your story is not my story but we ALL deal with something. One step and one day at a time. Understand that God always has purpose and plan. I cannot put into words how grateful I am for all the prayers and support I have received. I pray that my story gives you hope that regardless of your circumstances, you can push through. Subscribe, tell a friend to tell a friend. Live your best life.