What Did You Do?
Living with Trigeminal Neuralgia is an unpredictable journey. We will constantly find ourselves having to make choices that we would never have imagined. Things that are meant to bring us joy can now often bring us pain. Everyday tasks now have to be thought out, and we often have to weigh the consequences verses the moments of joy.
"What did you do?" - The dreaded question
It's not your fault when you're doing your best to manage TN and an attack comes or a flare-up of attacks sets in. I don't understand why, when my loved ones see me spiraling or hear that I'm in a bad flare-up, they often ask me, "WHAT did you DO?" What did I do? I mean, I looked up at the directional sign in the grocery store! I leaned over to retrieve things from the dryer or dishwasher. Maybe I just turned my head to look at a stop sign. Maybe I just took a shower, or maybe I just made the mistake of laughing! Those are things that every person does every single day without a single thought before doing so.
When we have done these involuntary movements all our life on normal human impulse, it is pretty difficult to do so now without thinking anymore. If I am already IN pain, then I will be thinking about every move I make. Most days those simple acts will not trigger a lightning bolt to shoot through me. But on the days, they do, and someone asks that dreaded question, I am always thrown back.
A compassionate response
Why should we ever be made to feel responsible for doing this to ourselves? Why is that the first thing out of their mouth? It seems a more compassionate response would be warranted. Why not respond with, "I'm so sorry. What can I do to help?" That's what we wish were the norm.
I certainly never want a pity party but only understanding and support. Sometimes that support may mean to Help me out of the situation I'm in that is triggering the attack. Don't shame us because we are out of the house attempting to enjoy a dinner out or time with grandchildren. When you see us gripping our neck, sweat coming down or face, or hear us breathing heavily and starting to sigh, simply ask what you can do. Or even better, have the conversations with us ahead of time to ask us what the best thing is you can do to help us when those situations arise. We don't need you to have magical answers, just an empathetic, gentle, assistance to get us safely to a comfortable place where we can attempt to de-escalate the pain. We certainly did not ask for such an inhumane disease, and we would never knowingly bring this on ourselves. Keep doing the best you can do and let your loved ones know how to support you on this journey.
It's about acknowledging the struggle, not assigning blame to an already suffering individual.
Choosing life, embracing joy
There are times in my life when I WILL choose to take the risk of pain by keeping my grandchildren for a few hours, cooking a meal for a family, going on an outing, shopping and trying on clothes, or driving in stressful traffic to get to loved ones. These don't always cause an attack either, but they often do. However, we cannot always lock ourselves away and stay lying down, in the hopes of preventing all attacks. That is no way to live. I do have days and weeks that I am forced to stay at home and stay down in order to get a flare-up to end. But eventually, I will need a little life. I will need to be around the things that bring me joy!
So, for me it will be worth the risk of an attack and paying for it for several days after. My family will still ask, "Why did you do that? Why didn't you tell me you were hurting? You didn't HAVE to come help with the kids." etc... I don't ever regret spending time with those I love. I do however regret that they often feel the need to cast blame to my triggered pain. Of course, they mean well and they hate seeing or hearing that I am in so much pain.
If this happens to you when you let your loved ones know that you are suffering a severe attack, don't receive this blame. Nerves firing off signals of debilitating pain are never your fault. It is not like you knew you had an abscessed tooth but decided to munch on ice chips anyway. It's not like you know your face is broken but you decided to ride a roller coaster anyway. With TN, we don't have any guarantee that doing nothing will keep us free from pain.
I know when someone hears that we are suffering great pain, they truly don't know what to say. Before you or your loved one was associated with TN, we typically associate pain with something that happened. If we had broken a limb or some sort of dental surgery, we would be expected to lie low and nurse the wound. If you’ve had a kidney stone or gone through childbirth you follow your doctor's orders to rest and heal. I was surprised to realize that most people don't understand a condition that cannot be cured and is not fatal.
I have had 3 major cranial surgeries to attempt to cure my TN or at least make it more tolerable. When this didn't happen, we were ALL very disappointed. When I would have to deny attending an event because I was in too much pain, I often heard, "Didn't you have surgery for that?" Having to explain this time after time began to make me feel like a failure. I wondered if I tried a surgery again with a different neurosurgeon, would I have a better chance at healing. If you have found yourself fielding these types of questions and responses, please hear me. IT IS NOT YOUR FAULT! If you have had success with one of these surgeries, count your blessings. Keep striving to do the best you can and to let your loved ones know how to support you on this journey. Remember, having trigeminal neuralgia is not your fault. Stiving to find joy in your journey may bring on painful attacks but that is Not your fault. We have to do the best we can to keep living and to find joy in our days.
Striving to find purpose in the pain,
Kim
Create Your Own Website With Webador