Some days a single tear trickles down my cheek. Some days I can feel the streaming flood of tears individually rolling down, as if they are leaving a permanent scar on my face. And on other days, there are uncontrollable sobs of which I cannot keep track of the tears. Somedays, I feel more hopeful & just thankful to have had the life I have. On other days, I am full of extreme bitterness and anger, coupled with sadness – always.
I decided a few weeks ago that this pattern I’ve been going through is grief. I haven’t lost “anyone”, but I have lost myself. I do not know who I can or will be anymore. I cannot do the things I used to do without the penance of pain. I am unable to dream and hope for the same things I once did as my past self. No more thoughts of what we will do and where we will travel as retired people, my body simply will not allow it in its present condition.
I hope I am braver than I think because I fear the worst is yet to come. I’ve read tons of articles and tried to stay hopeful that someone will research arachnoiditis enough and come up with a “fix”. The thought of this pain every day for however many years I have left is almost to much to bear. And the effects it is going to continue to have in my life and those I love with all my heart is just about unbearable.
I am only 43, but this all began just before I turned 41. I was driving down the road with my 13 year old yesterday thinking how will I handle sitting at your high school graduation? How will I travel to see you if you move away? I will not be able to pick up and play with my grandchildren. I will probably, depending on progression, be able to hold them as small infants before they to be too much too handle. Will I ever be able to go to an event that lasts a couple of hours with my family again? What kind of seating will they have? If it’s too uncomfortable, I will pay the price of the next several days or weeks – just for sitting in the wrong kind of chair.
Most days, I try to drown these thoughts out by focusing on the things I can do. I am still here to talk with my daughters and help them with school work, to give them advice they probably will not take! I can still walk and use the bathroom by myself without accidents. I am not my paralyzed! These are 2 of my worst fears! I do not want my husband or anyone to have to take care of me in those ways.
But the pain is here, every morning, every minute of every day. Make sure I sit in a comfortable chair, move around enough, but not too much. Bend as little as possible and no lifting to reduce the chances of a big flare up and the punishment I will be dealt.
Dry away the tears, try not to let them see. Most days I can do this! On some I am simply too overwhelmed to try and cover it up. Some days the anger spills out of me like an angry volcano and there is nothing I have yet learned to stop it’s wrath.
The tears will not cease to come. I’ve no idea how long it will last or if it will ever end – this grief of me.