All Good News

“AND UNTO DUST YOU SHALL RETURN”

Ash Wednesday. It is not just some ritual that says you are Catholic. It is a reminder of our mortality and frailty.

18 days post the onset of burning, numbness and tingling in my legs. 15 days from the neurologist at Columbia Presbyterian saying the words “Guillain-Barre Syndrome(GBS)”. 11 days from my last treatment of IVIG infusions. 10 days of this process they call “recovery,” which feels more like a slow death as I wait to wake up and feel good.

A bad dream, starring yours truly, began on February 1st, Super Bowl Sunday. I haven’t woken up yet. My health and emotional well-being has been shocked. I am so thankful that people care and ask me how I feel. Yet, I want to scream. Some people ask me how I feel and I get the feeling they want me to hurry up and get better. This really makes me want to scream.

How the F#*k do you think I feel? Do you think I feel good that the loud expressions of joy and laughter coming from my precious children now sound like nails on a chalkboard and hurt my head? Do you think I feel good when I’m told “I can’t wait until you are back to normal.” Do you think I feel good to wake up everyday scared of what symptoms will return? Do you think I feel good that simply blow drying my hair causes shooting nerve pain in my forearm into my fingers? Do you think it feels good that I cannot take care of my own kids? Do you think it feels good to feel so depleted and inadequate?

Yes, I’m angry. However, I don’t feel sorry for myself. I will get through this. I will make a full recovery. I’m just so damn impatient! I was the girl who did’t have time to be sick. I ran around the entire month of January tending to everyone’s needs, but my own. I didn’t make time to rest or see a doctor until it was so late in the game the Grim Reaper had already threatened me with his scythe. My horoscope as stated in the February issue of Marie Claire magazine-“Warning: If you keep pouring all your energy into caring for others, your wellness will start to slip.” Unfortunately, I just read that two days ago.

I spent 5 Nights, 6 days in the hospital. That was after 3 days of suffering, two of which I spent begging and pleading with two different doctors to figure out what was wrong with me, but I was turned away being told it was some strain of the flu or a virus. I knew something was seriously wrong. By Tuesday night, February 3rd, my hands started going numb and I called a close family friend, now a very talented & brilliant doctor who would listen. He called it. He said there was only one illness the symptoms I was describing could be. With Nephrology (not even neurology) his specialty, he said Guillain-Barre Syndrome(GBS). I had never even heard of it before. And on Tuesday night, February 3rd at around 10:30pm, I called a new girlfriend who moved quickly and set me up with a neurologist at Columbia Presbyterian the very next morning. Thank God for her. I was getting worse. If it were not for the brilliant doctor and wonderful new friend, I might not be able to write this.

I am so grateful to be up & around, but I’m weak & fatigued. I still suffer from headaches with varied intensity that seem to come and go whenever they please. It is hard to say if they are from the IVIG treatments or apart of having had GBS. I have intermittent tingling and numbness, in my legs and hands. I have woken up the past 2 days with my hands still sleeping. I have no sense of taste in my mouth for a girl who has always found eating to be an event down to a Magnolia cupcake. I only want soup. Ive eaten more soup in the last two weeks than I’ve eaten in the last decade. Apparently, Messieurs Guillain & Barre stole my taste buds too.

I look at my car out the window and I know I'm not ready to drive yet. My TYPE A personality has no escape. I only find refuge in the words I spill onto this screen. I’m looking at maybe a couple of more weeks and even then I will have to be very careful of being exposed to anything that could get me sick. The physical therapist wanted me to wear a mask in the gym. I drew the line there.

I’ve gone to bed at night trying to “psyche” myself out of this. I’ll say, “okay, tomorrow let’s wake up and go about the day like you are not sick.” The next morning comes and I cannot get my head off the pillow. I squint my eye to the clock and see 7:45am, 8:30am and 9:30am go by. Before I know it, its after 10. In my “normal” life, half my day feels over by 11am. I wake up and look in the mirror and think, “Who the hell is that?” Looks sort of like me (sort of), but sure as heck doesn’t feel like me.

People say things like “it could be worse, so & so got through this illness or that tragedy and blah, blah, blah.” Okay, so now, I  have learned what not to say in the future! Meaning, my situation is relative to ME. It is bad for me. Bad for my family. This is not about YOU or what someone you know went through. I am processing my situation right now that is unique to me. Why is it that some people feel the need to downplay my situation for something worse they have endured? Another thing that makes me want to scream. A very close friend upon being told the news just simply said, “I don’t even know what to say Melissa, my heart breaks for you.” Her words wrapped me that day like a warm blanket.

I want to shout at the top of my lungs-“Newsflash people. It is okay for me to go through the five stages of grief.” Denial/Anger/Fear/Grief/Acceptance. In my case, it’s not really in that order. The worst part of this? My kids have had to watch. I said I had to go to the bathroom the other day and my five year old boy said with a drone and an eye roll,”She’s nauseas again.” My three little boys (7,5,3) keep hearing the words sick and recovery. Is that healthy for them? I can’t shake my seven year old saying, “mommy,I thought you were gonna die.” I fear he’ll remember this time forever.

Each of my closest friends, my sister and my Aunt have cared for me during this time in ways I can never re-pay. They have held my hair over the hospital toilet, helped me shower, driven me, fed me and comforted me into all hours of the night. I am humbled by their affections, love and loyalty. My parents have kept my home and family afloat. They are the life preservers on my Titanic providing round the clock support in every way imaginable. They have been going for 15 days straight. This illness has made me feel like a child again. I would not be able to survive this time without their strength. And my husband, he is the anchor holding everything together and remaining calm and steady even in the face of so much pressure. Although I am hurting, my heart is warmed. I know I am blessed.

I do feel guilty that so many people have been adversely affected by my illness, I’ve caused people worry, stress and heartache. I generally take pride in not bringing those emotions onto the people I love in my life. I take care of people. I’m the Little Red Hen. I don’t like this story.

RECOVERY. I can’t help but re-define this word in my mind over and over and over. I’ve decided my recovery is purgatory. As defined by Merriam-Webster, “a place or state of temporary suffering or misery.” I find it ironic, almost symbolic that my faith is now in the season of LENT. This is a 40 day time period when Christians prepare for Easter through repentance, self-sacrifice and spiritual discipline. When I laid in my hospital bed one night in so much pain, I said out loud, “My God, why have you forsaken me(Mark 15:34.” I just blurted it out. I am still shocked that I uttered those biblical words. They are the words Jesus cried as he was dying on the cross. I also spoke out loud to my father’s mother who is deceased. I asked her to make the pain go away. I cry when I think of myself so vulnerable and hopeless. I guess severe body pain can make you say strange things.

God has given me this cross to bear. I just don’t understand exactly why. I thought I was doing everything, close to right. Living as a God fearing woman and spreading His Love, doing unto others as I would like them to do unto me. This year I wore dirt on my forehead with pride for Jesus and my Church, but I also wore it with penitence and sorrow. I have to believe that He wants me to take my suffering, pour that into reflection and deepen my walk of faith.

I am confident this is to be my Lenten journey. Here goes…