It’s crazy how grief will hit in random places. The counselor asked this week how my illness has effected my emotional relationship with my husband. I didn’t think it had, because the one great thing that has come from this disease is a much deeper relationship with him. Then I thought back on all our memories together: how we met, our dating time, our engaged time, our wedding…I realized all our good memories are now grouped into “the sick years.” Lyme has stolen the very best things from me. There’s not one stone it hasn’t left unturned, and unaffected. The grief of it all hit me like a rock in the middle of the night as if I’d experienced it again for the first time.
It’s a different kind of grief cycle–not that any kind of grief cycle is normal. I don’t believe the stages of grief ever come in exactly the consecutive order they’re learned in psych classes. This particular grief presents itself repeatedly day in and day out; I didn’t lose my health merely one day almost 5 years ago–I lose it again each new day, over and over again. I wake up accepting and knowing what is my reality, but then am still hit with anger when I can’t show up to a party with friends or even load my dryer with the wet, heavy towels.
I hate that it’s stolen my best times from me. Taken them and twisted my memories. Like “Sadness” on Inside Out who goes through and touches each of the joyful memories turning them blue. I’m left wishing my best days were never touched by my sickness, and grieving that each one of them were. I loved the healthy environment I was in at school, I hate that my health pulled me out of it and placed me back at my parents’, which resulted in my watching everyone move on without me to graduation the following year. Then when it finally became my turn after I did my best to finish online for the next year and a half, I was ready to don my cap and gown on stage but was too sick to show up to that as well. I hate that it was another huge part of me, my first time on my own where I realized parts of who I was, the community that brought me the most joy where I met tons of friends, and the place I met my husband. You don’t realize how painful it is to lose your dreams until you lose them the second and the third year in a row, seeing the pictures and videos of others achieving what you weren’t able to. Maybe you don’t realize it, because with each passing year it takes you learning exactly what your dreams meant before you can fully comprehend what you lost.
It kills me that I have different memories than others from the same situation. It’s hard to come away from a night with friends when they and my husband speak of the fun they had when I remembered it differently because the effects of being sick. So many events, days, months, and years, I remember differently than anyone else. So many days they loved, and I never want to see again. How do you connect when the feelings, abilities, and worries are so different?
How do you bond over sweet events when your reality was more bitter?
My engagement day was full of incredible joy and fun, and yet everyone was waiting on standby to change to plan B if I went downhill, and that night I had another scary episode with my pain medication when I accidentally mixed it with alcohol.
I’ve been in several weddings that have brought so much anxiety of the unknown because I was sick: for the new places I spent the night, the distance Ethan was staying away from me if something happened, how long I could go without my ice headbands on my head during the pictures, how close Ethan was sitting next to the front if i collapsed during the ceremony….. All of my excitement for each weekend was always capped against my wishes–I’ve only been allowed to hope, experience and take in so much. Can you imagine not fully living with life going on all around you? I had no idea of just what a gift it was.
My wedding day was amazing, but I can’t help thinking how little stress, if any, would’ve been involved had I not been sick. I would’ve been able to fully experience the day, the friends, the faces, the dancing, instead of half experiencing it. My deepest sadness in my marriage is that I can’t fully experience my husband whether it be through the muscle pain in our kisses, the lack of focus in our conversations, the tons of things we can’t go out and do together…
I’ve had so many good days, don’t get it confused with me trying to spin each of them negatively. But my pain was always involved, as it always is each day, and that does change things. I can’t wait to be able to fully experience anything that comes my way, unlike i’ve been able to. To fully live. And you bet I will make that my goal once the pain is gone.
You’re never more aware of the budding life around you until you’re presented with the possibility of not being a part of it.
There’s just such a freedom in full life, and such a bondage in sickness and pain.
The pain of loss is only a bitter reminder of how much you once had. My sickness took away all of my health, consequently leaving me in a place of surviving instead of thriving. I never knew how much I valued life and the ability to fully live it until I was faced with house-bound pain and all the inabilities.
Life will be such a gift when I get it back. My only choice is to see as much as I can as a gift now. Waking up (purpose). A delivered meal from a family friend (support). A place with running water and AC (provision). A phone call from cousins (sustenance). Today’s tv show (enjoyment). How could I have ever treated life as anything but a gift? Maybe I never would’ve realized the divine present life is until it was taken away from me. Maybe that’s the only way we all will realize it.
Don’t wait until your ability to live is taken away from you to start living. Really living.
For now, the pain from the past, present, and the unknown future will most definitely hurt. Perhaps for forever. But it demands to be felt. And maybe it is like the characters discover in Inside Out: our life events aren’t simply touched by one emotion. My wedding day was incredible joy, but also fear of my pain building that night, sadness from broken relationships at an event that highlighted family…but all of those things only built up my joyful moments and the gift that God was giving me in my husband. So many of our events are filled with the gladness and the sadness, and I think that’s simply because it’s life. Life isn’t filled with one emotion or two, it’s every emotion packed together, begged to be felt, and then called beautiful.
So for now, I will concentrate on what my pain has brought me–the good things. The mindset, gratefulness, deepness I never would’ve had without it. The sadness mixed with the anger that produced greater joy in the little things. The comeback that I know is coming, that will be greater than the life I had even before the disease.
And I’ll try to call it beautiful.