Living in Chronic Pain from Neurofibromatosis: Unreliable Scoreboards

Fear sometimes clutches it’s hands around my throat and squeezes until I can barely breathe. And that’s what has been happening lately. My legs and feet are so numb I can barely feel them. What I can feel is cold. But other than that, even after a full night’s sleep, I can hardly walk and I’m without feeling, except for the pain. It’s scary beyond words.

Sometimes it’s so hard to know what to do. Part of me wants someone to come in and take care of me; get me to my appointments, help with the shopping, the cooking and the cleaning. And Oliver’s care. On one hand, I could use that help. On the other, forcing myself to keep moving forward like the shark (who never stops moving or dies) keeps me mobile, though unsteady. Its impossible to judge anything anymore.

I wrote the following to my mother a few years after her passing in 1998, and I’m thinking of that now. We saw her as weak; but she was stronger and braver then most of us can ever hope to be. Why I couldn’t see that then, I’ll never know.

Dear Mom,

I’m sitting here, trying to pinpoint the moment in time our relationship fossilized. When its’ rehashed comments and responses became so etched in each of our psyches that they may never be erased. I write “may never” because no matter what, there is always possibility. Even time and space can’t trample on possibility, so long as we are open to changing that which we think is unchangeable. At least that is what I believe.

Blame is something the entire family embraced and practiced well. Unfortunately, you were the target of much of that blame. We all perceived your dependency on others as weakness of character; your lack of what the world sees as “accomplishments” as failure to achieve, seldom recognizing your goodness as achievement of the highest order. We confused dependency with need, making it a hateful four-letter word. Now, as I near fifty, I see myself as having what I thought were your “weaker” qualities, especially the “lack of” type that are only measured here on Earth. And being ill, I now need many of the things you did, like help with finances and occasional assistance with my mobility. The fact that I drive and worked most of my life didn’t release me from what I perceive as failure.

Some say we are put here to accomplish things, making ourselves into people that others can point to and say, “Oh, she’s a doctor, lawyer, astronaut, teacher, musician.” What we have trouble coping with is how little those things really mean. Still, being none of those things, I sometimes think of myself as having all zeros on the scoreboard of life. I’ve been looking at the wrong scoreboard, Mom.

I’ve been forgetting who you really were. Your sweetness, your loving kindness and your astounding soul. You overflowed with those qualities. Do I possess any of them? If so, then why is it so important for me to be seen in a way that I know deep inside means nothing in the long run? Certainly, not everyone has that need. There are entire societies that know how to acknowledge and cherish the values I sometimes toss aside.

You know, Mom, I left my birthplace in 1986 in part because of my relationship with you. Your dependency on the family drove me nuts. And as much as I loved you, I was beginning to hate what I believed to be your weaknesses. You didn’t drive. You didn’t work outside the home. You didn’t seem to have any hobbies. You volunteered, but not much. You were artistically talented, but didn’t pursue it. I was so angry about so many things.

And yet, when I wanted to move away and started crying at the thought of how much work it would take to make that happen, you turned to me and said, “I’ll miss you like crazy, but you have to go. Don’t be a big scardy cat like I have been all my life. You can do it.” And you cried. And I cried. Those words are forever etched in my psyche. It was the bravest thing I ever heard you say, and in that moment I was so proud and thankful that you were my mother. I still am.

But in a way, your response also scared me because now I had no more excuses. It had been 11 years since I promised myself I would move, but you had been my stagnant pretext. I got to blame you and your dependency and be mad, instead of just taking the risk. And now the jig was up, so to speak. You threw the ball squarely in my court and I had no one to blame, only a risk to take.

Our relationship got better after I left. But soon, you really started to get sick. Little by little, you disappeared on us. Sometimes I am terrified I will get Alzheimer’s and have no control over myself, my life choices. I’m halfway there with my current illness.

When I went home to help Dad get you settled in the assisted living facility, you had a cogent few moments, and said, “I like this place but I don’t want to live here alone.” You cried. I cried. Dad cried. I thought I would never forgive myself. Dad thought I was blaming him, but I wasn’t. In fact, I wished he had done it sooner, because you were so sad all the time and he was irrational and truculent about taking care of you. Only he couldn’t be there 24 hours a day, of course. He would take off occasionally, and whether he was gone a few minutes or a few hours, you would be all alone, not knowing what to do, not knowing who or where you were half the time, and frightened. The hole in your heart was abysmal and dark, and your endless tears drowned nothing. And I was 1600 miles west.. Dad finally got someone to come to the house half time, but it wasn’t enough. After you went in the home, you seemed happier for a short time. Then you just got smaller and smaller until you flickered out.

We were all there on that day; I felt your presence until the moment you let go. As my head rested on your chest, I felt your life-force move through me in a halting intake, then out my mouth in one big gasp that came with your last breath. My head reeled up and I wailed, “She’s gone” to the rest of the family, who were gathered around you. The essence of you vanished in an instant, leaving behind a vapor trail and the casing that was once your body. I felt G-d’s presence twice in my life; once when I witnessed the birth of your first grandson, my nephew, Benjamin, and in the moment of your death

I know all those things I think of as success aren’t what really matters, even though the world tries very hard, every single day, to tell me otherwise. Our “success” in the world is far different then what starts as gold stars delved out to us as preschoolers. And those gold stars are all too often the chrysalises of what becomes the canonization of over-achievers. Our society rarely recognizes that hard work doesn’t always pay dividends. And yet we frequently forget, if ever we are taught, the Golden Rule. But you taught it to me in spades. I only wish I could appreciate all that you were, without beating myself up so much. I know you are never very far from me. I sometimes feel you a foot or two above me, to the left, smiling down. I turn to you during those times of despondency, and once, while meditating, I “heard” these words:

“Sherika, my sweet girl” (Your eyes are glistening with tears. I feel one hand on each of my cheeks.) “You are so brave. I know you don’t think you are, but it’s true. That cynical side of you is racing to catch up, telling you it’s not hard to be braver than me, who wasn’t brave at all. But that’s not what I mean, and your soul knows it.

You feel you don’t belong, but if you are there, you must belong, right? It’s taking me time to adjust to being on the other side. I miss you so much. I miss your Dad. I’m happy he is with someone. But it’s not as easy to let go of jealousy as the movies make it out to be. There are bits and pieces of what we once called our humanity that want to cling to the life we just left. But the worst is over. The disease. And I know that’s what you want for yourself, too. I wish I could help you in that department. I wish I could say something that doesn’t sound like it belongs on the bumper of a car. I wish I could see you, touch you, and talk to you the way we use to when I was well. I know we can in some ways; and we must be grateful for that, and leave the rest behind. I know you want the things that seem easy to have; romantic love, health, success. All I can tell you is to open yourself up to it. And yes, I know that hasn’t worked for you in the past. Maybe it won’t work now, I don’t know. But doing nothing, that we know reaps nothing.”