It’s been over a month since I last blogged. I needed a break. I needed to process, to reflect on, what I was typing about.
March is Brain Injury Awareness Month so I thought it’s as good a time as any to resume writing again. I’m not gonna lie, having a brain injury sucks but it’s eye-opening too, whether your ready for the swift kick in the ass or not.
I’m reminded of a quote from a film where the main character describes the afterlife, or purgatory: “Everything’s the same [as life] here, just a little worse.” (Zia/Patrick Fugit, Wristcutters: A Love Story, 2006.)
Life went on (business as usual) for most people, after I survived a major stroke, whereas my life, I felt, at the time, all-of-a-sudden . . . stopped. Having a traumatic brain injury, sometimes, feels like my purgatory. When things are good, I’m on cloud nine. When they seem bleak, I feel like I’ve never felt so low.
“. . . When [things are] good,
[They are] very, very good.
But when [they are] bad, [they are] horrid.”
(The Little Girl With A Curl, “The Real Mother Goose,” 1916.)
These extremes are like a roller-coaster of emotions every day. A year and a half later, I still have trouble not feeling like a burden to those who even WANT to help me. Yeah, I can’t get around as well as I used to, but, then, I think of those who are less fortunate than me. I feel like I have no right complain. I don’t have migraines or suffer from chronic pain. I get frustrated at only having the used of one hand/arm and get embarrassed because of my limp and speech impediment but I still have my wits about me. My memory loss could be a lot worse. When I get tired or lack energy, in general, I, sometimes, can’t help but feel betrayed by my body. I have a lot of resources and people who look out for me and, sometimes, I feel remorse for those in similar situations who have less that me. I’m told all that’s called, “survivor’s guilt.” (http://virginiatech.healthandperformancesolutions.net/Anniversary%20Articles/Survivor%20Guilt%20What%20Long-term%20Survivors%20Don’t%20Talk%20About.pdf, The Brain Tumor Society, 2001-2008.)
“It’s a cycle.
And then miserable again.
I think I’m looking less than a year for recovery at this point.
I think it’ll go by fast.
I hope so.
I hope to look back on this year as just a hiccup in my life; to look at it as something that made me stronger and move on.”
(Facebook: Mariah Rose, January 1st, 2014)
When I realized I was coming up to the one-year anniversary of my stroke, it dawned on me that things were more serious than I thought. I was nowhere near back to my “old self.” I had tried to convince myself and others, that “I” was in this body somewhere, I just needed a chance to recover and I’d be good as new.
The truth is I have changed. However, you know what they say, “The more things change, the more they stay the same.” (Jean-Baptiste Alphonse Karr, 1808-1890.) The more I beat myself up and the more I chose to be stubborn, the more I felt guilty and like I wasn’t doing enough. I’ve always been my own worst enemy.
I tried to ease my guilt and depression by having a, sort of, party for my “Brainniversary” that turned into a fundraiser.
“I, Mariah Rose, had a stroke, almost, a year ago. Without the love and support from my friends, family, and people I’ve met along the way (even people I don’t know), I don’t know where I’d be.
“To celebrate my ‘Brainniversary,’ which is on October 5th, I’m hosting an event at Monty’s Krown to raise funding for the Happiness House Foundation in honor of the support I’ve received.
“When choosing an organization to donate to, I looked at places that are local, not-for-profit, and that I’m not affiliated with or will work with directly in the future.
“Happiness House Foundation ‘raise[s] and generate[s] funds that will promote, support and augment the continuation of long-term services . . . for people with disabilities’ of all ages, including adults who have sustained Traumatic Brain Injuries (TBIs) like I have. The adult programs are located in Canandaigua, NY. They, also, have children’s programs there and in Geneva.”
It was an all-around success. WE raised $2700. Not bad for small-time. The high from giving and being surrounded by so much love was incomparable but, unfortunately, didn’t last long.
I’ve found that most emotions are fleeting. If you dwell on negative ones, it’s easy to spiral downward . . . so easy.
I don’t remember when, exactly, I decided to take charge of what I could and start asking questions that I was afraid to know the real answers to: the ROOT of who I really am. It hurts but I’d rather live life the hard way than to live it oblivious or naive. More importantly, I’m learning how to be content living in the now, while still working on attainable goals. That means defining what happiness is for me (because it’s all relative) and adapting my life to suit that definition. It’s all about learning about my “new self” and sticking to my guns.
It can be confusing because the line is a bit burry between my “true nature” and my new brain-injured self. I’ve been analyzing my multiple selves (past, present, brain-injured, etc.) and asking, “Would I have reacted this way before?” I keep finding (I think) that my instincts are similar, just exaggerated.
Some things I can blame on being “strokey.” Some things, I know for a fact, are just the way I am. I choose to take ownership of my blessings and curses and manage them in the way I can, doing my best. I’ve been dealt some shit hands in my life but the trick is to play those cards. NEVER FOLD. Sometimes, you lose big but you have to play to WIN.
I’ve been given a second chance. Yeah, I still grieve over the shoulda, coulda, wouldas, (I’m human after all) but through past-life experiences I can regroup and manage with support.
Now, I see my Brainniversary as my “new birthday” because it was the “death” of my past-self. When I realized what had happened to me on October 5th, 2013, it was surreal. I, even, went through the grieving process; totally textbook-like.
- Denial, numbness, and shock: I think, at first, people around me, where more upset that I had a stroke, than I was. I didn’t grasp (as mentioned previously) how serious it was.
- Bargaining: I still catch myself wondering what I could have done differently to prevent it from ever happening but my logical side squashes that sort of thinking because it’s of no use thinking about what could have been. It’s over. The worst part is over.
- Depression: “I want you to think about something. I was going places. I was traveling. I was networking. I spent years honing a craft. I spent seven years working up to something only to have it taken away from me in one fell swoop. I’m okay, considering, and I promise you I’ll get back to it but I hope that you never have to know what that feels like.” (Facebook: Mariah Rose, February 5th, 2014.)
“I think I only share about 50% of the emotional roller-coaster I go through on a day-to-day basis and I’m going to keep it that way. Sometimes, I’m sick of appearing to keep it together.” (Facebook: Mariah Rose, March 16, 2014.)
- Anger: “I hate, hate, hate when people don’t know that I had a stroke, like, 8 months ago? I catches me off guard as much as it catches them off guard, ya know? So, feel free to throw out as much gossip as you see fit and I’ll cross bridges when I come to them because I have the balls to say something to your face if I feel so inclined.” (Facebook: Mariah Rose, May 8th, 2014.)
“Sometimes, I want to chop my right arm off with a machete.” (Facebook: Mariah Rose, May 23rd, 2014.)
“Don’t waste your energy on pity for me. I don’t want it.
“I’m not sharing my experience with you because I want you to feel sorry for me. I’ve said it before and I’m saying it again, I’m doing this because if I’m forthright with everything I’m going through, I won’t have to repeat myself as much and venting is, I think, better for my recovery than shutting down.
“And another thing, I had brain surgery, less than, a year ago. I’m not okay but I’m trying the best I can to get there. I’m not at the top of my game but I’m climbing steadily upwards.
“If you can’t handle the heat, stay out of the kitchen and get the fuck out of my way.”
(Facebook: Mariah Rose, June 13th, 2014.)
Although I feel like I’m coming out the other side and the roller-coaster rides are less severe, I still go through that cycle. Just three or four days ago, I journaled, simply, “I have abandonment issues. Now, leave me alone.” But, like I was saying, “most emotions are fleeting,” especially the negative ones. Just getting how I’m feeling out, instead of bottling it up or ignoring it like I used to, is cathartic. Acknowledging feelings is the way to go. It’s like ripping off a bandaid.
Looking at what makes me content moment-to-moment, again, I realize that I’m almost there.
- Decompression time: My mental state, I’ve realized, lately, depends on this so it’s become a priority.
- My own space: I started staying in my own apartment about a week and a half ago. It is so liberating. It was available February 1st but I was so nervous about it! It felt like when I left home for the first time for college and that didn’t go so well. That was 12 years ago. After a month of procrastination and pep-talks from my mom, head-shrinker, friends, etc. I was like, “Why didn’t I do this sooner!” . . . because baby steps.
- Working out: My gym is only a mile away from my apartment and I treated myself to a new yoga mat for floor exercises and stretching.
- Feeling healthy (staying active, getting enough sleep, eating healthily, etc.)
- Doing research
- Being creative
- Travel: I’ll plan a trip soon, methinks, now that my apartment is more like home.
- Being around people I love, who love me back (First addressed in mariahrosesramblings.wordpress.com, BREAK the Cypher, January 5th, 2015.)
I’ve, also, been busy sharing through social media. I want to share my recovery, people who I find inspirational, and quotes that provide hope.
Some people who have brain injuries or are chronically ill or are their own worst enemy, stuff like that, feel alone in their struggles.
YOU are not alone. I am not alone. WE ARE NOT ALONE.
By putting words and adding hindsight to photos I’ve posted through my recovery, and sharing what’s helped me throughout it, I’m further coping with my guilt, grief, and depression. I know if just person is positively affected by what I post, the world will be that much more of a better place.
Facebook: You ARE NOT Alone: Recovery
Mariah Rose’s Ramblings: firstname.lastname@example.org
E-mail me if you want to comment on my “ramblings” but aren’t comfortable doing it publicly. I’d ask you not to abuse this gesture. I WILL NOT respond to inappropriate inquiries and I WILL NOT give out my phone number.
All these resources meant to help people, survivors and caregivers, alike.
I’m not a medical provider. I’m not a therapist of any kind. I’m just a survivor whose willing to share.