My first rebirthday passed on May 30th and as I always do on my birthdays, I took time to reflect on what the past year has meant to me, including how it started, how it's going, and how I got through it. I also thought about what I liked, what I didn't and how I can change what I didn't like;how I can make the next year of life better.
The beginning of stroke recovery was daunting because nobody would tell me or could tell me what my journey could/would look like. I genuinely thought that within the first year, I would be back to pre-stroke “normal”. I thought inpatient rehab would continue until I was “back to 100%” which scared me because my inpatient stay was literal hell. I thought I would be back at work, typing quickly with both hands, being fully independent and healed. Nobody told me the kind of uphill battle I would have. Maybe they think it's too daunting and discouraging to a patient. I know that there are people who would prefer to remain oblivious, but I am not one of those people. I like having as much detail as possible, even if it's sad or scary, so that I can conserve the necessary energy for the task at hand and to game plan my coping strategy. It's how I can best manage my anxieties and live in the moment. At the original time of writing this, I was one year and three days post stroke. By the time I post this, I will almost be one year and one month post stroke (neuro-fatigue, anyone?!?) My arm is still pretty much dead weight, my fingers are still on strike, my leg is functional but still weak. Two days before my rebirthday, I got some Botox injections to combat the tone I have so I can work on having a more functional left side. Except it takes about 6 weeks to see the full potential of the injections, and I was notified two days after my rebirthday that my outpatient rehab would stop at the end of the month. I felt gutted, blindsided and abandoned by the team that filled the delusion that I was cared about. I felt cheated, yet again, by the very system that is supposed to help and heal me, or at least give me the best odds of healing. I feel lost and uneasy because even a year later my care team won’t/can’t tell me what to expect, they just keep letting me fend for myself. At this point I've learned I can't rely on anyone but myself on my journey of recovery, and even then I will let myself down sometimes because I just can't get out of bed/off the couch for a few days. If I keep low expectations, it'll be hard to be let down; in theory. With that being said, I fought back on the team’s decision and was given one more month and will now be discharged at the end of July.
The lesson: This year I have learned to use my voice. Turns out I am good at shouting for my needs; how come I only now realized this?! I could have saved myself plenty of headaches had I known...whoopsie.
Needless to say, this year has been one long internal battle of worth, motivation, finding the point of even remaining alive and adjusting my expectations of myself, my care team, my friends and my family. The truth is a bitter pill to swallow. The truth of the matter is that after the initial shock, almost everyone falls back and forgets you exist, or they suddenly have a mirror for their own mortality and don't like it so they stop coming around you and talking to you; so the main part of the journey has been and still is very isolating and lonely. Even with supportive, well-meaning caretakers, family and friends, the loneliness eats you up because they don't truly know what you're going through or they are scared to face it with you. Other stroke survivors can identify common themes but even there you will find people who do not understand because strokes affect each person and each body SO differently. I have caught myself envying other stroke patients because they don't appear to have physical deficits but that doesn't mean they have remained untouched by their stroke. It just means their deficits aren't as visible, it can mean their stroke affected their cognitive health, their ability to speak or express themselves, makes them uncontrollably dizzy, fatigued, etc. I think that may possibly be a harder burden to carry because it's not as apparent as a limp or mobility aid or a wonky arm. Once I came to that realization I stopped envying that they can use both hands with ease (as it appeared) and started praying for a fully speedy recovery of body and mind for all survivors.
Another realization in recovery; your care team will make you feel like they are fighting for you, like they want to see you succeed; and then they'll throw you out like last week's take out gone bad. With that being said and my anger shining brightly, I still have to choose to believe there is a reason that I was kept alive by the universe. That this suffering is not all for nothing. That I will be able to return to the workforce, that I'll be able to regain my independence, travel the world, build my own family and most importantly, change the world in a positive light; to be the person I needed, to be the advocate within the healthcare system that I so desperately needed and still need. Although I've learned to keep my expectations low, I still choose to dream big and believe in the future, because if I don't there is literally no point in remaining alive. Not to get all dark and morbid but that's my truth; yet another bitter pill to swallow.
Another bitter pill to swallow is the disgusting internalized ableism I discovered with my newfound disability. I didn't quite understand or recognize my internalized ableism and the ableist culture of society until I found a beautiful community on social media of disabled content creators (I highly recommend following them. Reach out if you would like to follow them, I want to get their permission first before publicly posting). When I first discovered that my stroke left me disabled; I resented the wheelchair, which in hindsight is the very tool that guaranteed that I would have some sort of freedom. Even if I could not properly use it because half of me was paralyzed and instead of assisting me in learning what to do to guarantee my freedom, I was tied back using a bed sheet and told to deal with it “because that's what rehab is about.” I just kept wanting to be “normal”. And in case you forgot like I did, normal is relative and a construct of society, so you can change what “normal” is. These are things that I rediscovered through the beautiful community on social media.
I had an extremely traumatic year and I could use it to play victim, but I am trying to use it to play queen of the jungle because this is about survival. I am going to let it turn me into a lioness, to use and channel my anger into positive change. To disrupt and ultimately fix the broken system the world calls healthcare. I have no idea how I will do it, I am still trying to identify and understand what to change for the positive and how but I will, and that's what matters.
I've learned in my reflections that I still have a lot of anger within me about this situation, but I also have so much to be thankful for. I wake up every morning. I get to hug my loved ones. I get to see my nieces and nephews grow. I get to see beautiful butterflies and flowers. I get to eat yummy food. And most importantly I get to laugh, learn and love. I do not know at what point I will be when it's my second rebirthday but it will be grand. I hope for myself that by then I will have a job, a functioning hand (and fingers), I will be able to drive myself around and I will still be laughing my way through life and hugging my favorite people.
Dream big, but keep your expectations low. We can cry but we must wipe the tears and remember to get back to work. Keep fighting, there are people who need us alive and well; we are some of those people, love.
Xoxo,
Dana
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