Once upon a time, I was just me. I was just Anj. I was not a caregiver. I was a songwriter. I was a poet. I had an insatiable curiosity about the world. I loved exploring new things. I traveled to 11 countries with just a backpack and my camera. I played my music for strangers, with unknown faces that I loved to study from behind my piano. I had unique struggles. I had unique dreams. I had a love-hate affair with my own frustrated idealism. But I was me. And I knew… me.
Before Patrick’s TBI, my knowledge of medical terminology, procedures and treatments was abysmal. Now, I’m practically a textbook dictionary of TBI. I can hold my own with doctors, nurses and therapists in just about any conversation regarding my boyfriend. But the point is, that before this happened, the caregiver life of continual self-sacrifice was never on my radar. And as a result, I committed all the cardinal sins of a woman living on the outside, whenever I was talking to someone on the inside. I offered what I thought were consoling words to the caregivers that I met casually. I tried to build them up by telling them how strong they were.
That is why I say this not from a place of self-righteous anger, but rather from one of enlightenment which only comes with experience:
Please stop telling caregivers that they are strong.
We don’t want to be strong.
We want to be weak. And for that to be OK.
Please, for the love of God, help us. Please allow us... to be weak.
I’ve read so many blog posts over the years about what should never be said to a caregiver. These are phrases like, “I don’t know how you do it” or “at least your loved one is still with you.” They’re tidbits of misguided wisdom like “God doesn’t give you any more than you can handle” or “Make sure you take care of yourself.” All of these are terribly unhelpful, but this isn’t a post intended to delve into each one to explain why. This is about the four words, which every caregiver has heard time and time again, as they resonate empty and hollow against their tired, tin-can hearts. The phrase that trumps all others:
“You. Are. So. Strong.”
Telling someone that they are strong when they feel weak, often has the paradoxical effect of making them horrifically aware that they are indeed about to break. Remember, a caregiver’s strength is built in the fire of obscene tragedy. We enter the blaze under a mandate of necessity, as awkward, quivering coals. Then the fire quickly burns away whatever of our old selves we had clung to, and turns us into sharp, cold jewels. Yes…hell yes, we are strong. We know this. But we don’t want to be, nor do we know how to keep it up forever.
Still, I don’t blame those I see at church, or friends I see a few times a year, or family that live far away for saying these words. I’m sure that the phrase “you are so strong” is intended to provide comfort, respect, and admiration. I appreciate the emotional origin and intention of the words. So, I receive the compliment(?) as intended, and I hug them. I thank them for loving me.
But when they come from those who by blood, or by bond could help and don’t, the words become toxic. They become poison. They become a mockery.
Every caregiver has at some point found themselves standing out on a ledge, thinking of throwing it all away. They’ve learned why sleep deprivation is a form of governmental torture. Their own brains have turned on them, and they can’t form complete sentences anymore. They struggle with an engulfing depression, anxiety or loneliness. It’s as if they are drowning in an ocean, gulping for oxygen against the pounding waves, when suddenly a loved one appears in a little boat with a life-preserver ring. But instead of throwing the ring to the drowning caregiver, they hold their hands up to their mouths, and shout into the pelting rain…”HEY!!!! YOU ARE SO STRONG!” and then quickly paddle away.
Truly, that is how it felt for years, to be told that I was “strong”. I needed help. Not words.
However, I am here and alive today because there was a sacred, lion-hearted woman who threw me a rope, before I sunk underneath the waves. She came at the right time, about a year and a half ago…unexpectedly. She saved me temporarily, until I could get enough oxygen to stay on the surface by myself. I don’t mind when she, and others that came after her, tell me that I’m strong. That is because they are part of my strength, in that they allowed me to be weak.
Ironically, my guardian angel wasn’t someone with a blood/bond obligation to help me or Patrick. She was just a human being with a gigantic heart, who made my pain and struggle her own. She could see what was behind my eyes and read my pleas for help. She was my human life-preserver.
Now, some might say that if a caregiver doesn’t ask for help, it’s their own damn fault for doing it alone. It was extremely difficult, but I DID ask a few times for assistance in the beginning, when I became Patrick’s sole caregiver. In fact, I was down right desperate! However, it fell on mostly deaf ears, and in unanswered texts and emails. Let me tell you something else: asking for help, depending on the receiver, can feel a lot like groveling; like you’re putting someone out. Who has the strength to do that, when they are already so busy being super-duper-strong for their loved one? All that super-hero-ing doesn’t leave a lot of strength leftover with which to beg for help, now does it?
Sorry. That’s my Jersey-tude surfacing. *hastily stuffs it back down*
It’s just that every caregiver I have ever met, appears to the world like they’re smoothly, holding everything together. Yet every single one that I’ve talked to is almost ALWAYS falling apart. This is because when you love a TBI survivor, you HAVE to keep the appearance of strength for their sake. They need you to be steady and serene, like a child would require of you in a crisis. But that doesn’t mean we are even remotely OK. Most of the time, I assure you we are not.
Patrick is no longer wheelchair-bound or paralyzed on his left side. We have a lot of work left to do with his left leg, but the daily haul of his once limited mobility has passed. In fact, he’s grown so much in his recovery, that I now have the blessing and earned freedom of beginning to look after my own health again. However, I did the grunting, heavy-lifting and hard work of recovery alone, and I would not wish that on any person that I know, friend or foe.
Listen, I know that everyone has their own struggles. Life is crazy, complicated and jam-packed with pressures. No one can be expected to understand that which they don’t live. Yet I cannot stress this enough: caregivers need someone to care for them too. So, if you love someone (who loves someone with traumatic brain injury), please, help them. Don’t tell them when you happen to run into them, to call you if they need anything. Pick up the phone, and offer specific help. Tell them that you’ll bring over dinner on Tuesday and sit with their husband, wife, child or parent, so they can take an hour to read a book, take a bath, or get out of the house. Stop by and do a load of laundry. If you can’t help physically, call them instead. Let them cry or vent on the phone to you. Just be present. Listen. These simple tasks were the greatest gifts that I ever received these past few years. They meant everything to me.
If you can’t do any of those things, then please, (and I say this with love), don’t a waste a breath telling your loved one that they are “strong.” Because I can reassure you that they’ve already heard it a hundred times, they know, and this time it’s your words that will fall on deaf ears.
Lastly, to all those lion-hearted kindreds out there, the dear, sainted life-preservers, who are the support behind the supoort: thank you.
We love you. We appreciate you. We need you. Thank you for allowing us…to be weak.
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Thank you. All our love, Anj & Patrick)