Celebrating Sam and Will’s Birthday without Peter

Today, my sweet twin boys Sam and Will turn 13! A momentous occasion for sure and yet, all I want to do today is cry. All I can really focus on, is how gravely ill Peter is and it is getting to me on a 24 hour basis now. He is getting worse and worse and I don’t know what to do next. I feel that I am depressed more often than not. This latest news of his adrenals failing is probably more than we can handle right now. And, on the heels of that news and doctor visit, Peter and I had a hideous fight that was so awful I think I have blocked it for the last few days and yet, I am still quivering inside. When, we came out of that office, I felt a complete feeling of terror and urgency to clean out his system, to “save” his organs by completely detoxing him off of all the drugs he is on and has been, that have made him become completely toxic and have caused his hormonal systems to shut down so much, that he can no longer do much of anything. I felt complete panic and driving home we had the most awful, yelling, vicious fight ending with Peter jumping out of my car in traffic. I went nuts and turned around as soon as I could, driving back to the gas station on the corner. Suddenly, unbelievably, my cell phone would NOT work. More panic. I ran into the gas station and begged these Jamaican guys to let me use their phone. They were kind and very concerned. I called Nick and begged him to come asap. Sam and Will were waiting for me to pick them up in the library and I called Shep and asked him to go there. Then, I began walking the entire shopping center searching and then screaming for Peter who I could not find. Went into the movie theater and then asked them to use their phone so I could try and call Peter. I was shaking too much to dial, so these nice guys did it for me. No answer. I went in and out of every store yelling for him, crying, shaking, hyperventilating and feeling like I would simply collapse any moment. Where is he? Where is he? When I thought I was nearly at my end, he called and said he was down the road, several blocks away and he could walk no longer. When I got him, I could no longer catch a breath and began to feel that I would vomit. He kept saying he would drive but I could not allow that. Eventually I drove us home, where Nick and Shep awaited us to try and have a conversation to calm things down. But mostly, Shep cried and I cried and spoke of how we could not watch Peter like this much longer. Jesus, please, show us the way.

So, now more days of Peter just lying in bed, with no strength, no energy, no hope, no nothing. I went to church this morning but I couldn’t stop crying. The thought of me begging, begging, screaming for God to help us, reduced me to tears. The hymns, made me gasp. I held Shep’s hand so tight and kept whispering to him, “I don’t think I can do this.”

So, now I must snap to it. I must celebrate thirteen years passing of one of the most glorious days of my life. But instead, I cannot stop weeping. God help us all. Help me stay focused on Sam and Will for these next few hours. Amen.

Overreactions

Tears are welling up in my eyes as I place my groceries on the conveyor belt in Kroger. The elderly woman with chopped gray hair, is ahead of me and buying all the marked down bakery items and 3 quarts of marked down buttermilk. The man, sort of with her (sharing a cart after all) but sort of not, because he separates his groceries from hers with the divider, has gleaned all the rest of the marked down cakes and cookies. I wonder. He too, has some discounted buttermilk. He is big and he is obese. What will they do with all these chemical laden sweets? He looks at the cantaloupes I am buying and says, “Ahh, I was so tempted, but figured, not this time.” I’m not sure what that means. Should I give him mine and pay for them? Then, he squabbles over the prices being rung up and frets that he cannot find his $10 bill. His total is $30.36, which oddly includes a copy of Consumers Reports at $6.99. He tells the cashier that he filled his gas tank yesterday and had to go to the bank to get what was left in his account to pay for the gas. I am getting choked up now. He tries to make jokes that aren’t funny and no one laughs, not even politely.

My turn now, includes mangoes, peaches, the cantaloupes, cottage cheese, organic cereal and Greek yogurt. Purist? Dieter? Effete food snob? I have my reusable bags for which Kroger gives me extra points. Where are those points and how do I use them? The bagger struggles with my nylon flat bags because he has some type of palsy and completely mangled and tangled hands that can barely move, let along pick up each peach to put into my flat bags. I try to help him, but he pulls away and drops each peach separately in agonizing movements. Now, I am overwhelmed and fighting to hold back my tears. It is all so hard for everyone. It is such a damned struggle for us all to hold it together, to get the things done, to pay for them, to move them, to complete them each and every day…. do we really have to emulate Jesus carrying his cross ALL the time?

I am tender. I am vulnerable. I am in a complete state of terror and panic. My ill son, so very, very ill for the last few years with Chronic Lyme Disease, curled up in a fetal position on most days up in his third floor, isolated bedroom, has a new symptom. He has been bleeding on and off for some time and has hidden this, spending inordinate times in the bathroom day after day. He says it gets better, and it gets worse. I am shocked. I do the thing no one should do, when I go online and look up the symptoms for Colon Cancer. They all match to a T. We rushed to the general practitioner yesterday in the hopes she would find hemorrhoids. She did not. Yes, the blood was dark in color. We need to see a proctologist. I go directly from 0 to 100 in seconds and find myself in the “wanting to rip my skin off” place I am familiar with. I range from overwhelming terror to panic to hysteria feeling that in his ill state he could never survive another onslaught and that I simply could not survive that lack of survival. Confusing? When panic and fear take over all Zen and rational behavior, this is what happens. We cannot see the doctor for 5 days. I feel I will never survive 5 days. I may not. But what does that mean?

My kind and quirky therapist has me come to see her last night. On the way there, I find myself driving behind a screaming ambulance. On the best of days, I cannot, absolutely cannot drive behind an ambulance because I return immediately to the trauma of that moment on 5/3/95. I especially cannot do this tonight, so I am beginning to crumble before I ever arrive. I am jealous of all the people I know who look like they are having happy normal lives. I am jealous of my old acquaintance in the Hamptons whose one daughter just married this weekend, while attended to by her very pregnant sister. They went to nursery school with my kids. They are normal. I am envious. I am jealous of my friend who I met in Europe in the 70’s and whose very wealthy, healthy and successful son just got engaged and is planning a fabulous NY wedding. I do not wish these friends ill harm in any way and I really am happy for their joy, but along side that is envy. Can those two emotions coexist? Perhaps. So, when a smiling couple emerges from my therapists office, indeed, I am jealous of them too.

Basically, the therapist tells me that I need to get my act together and I can see the fear on her face when I begin sobbing and shaking. I can feel my whole body heaving when I try to describe the fear that I am accusing her of not understanding. Who really can understand the depth of dread and angst that I live with? No one can. But perhaps, that doesn’t matter. Peter is not my only child, she reminds me. It is true. I must remain standing through the tornados to care for the others, especially the little ones. I need to imagine that things may not be the worst, and might be less than that. I need to divert myself from the ruminating. Is that possible? Don’t know. Will see. My mother, my crazy, crazy mother used to say, “To stand from fear, set free and wait.” Did she leave me some wisdom?

I Forgot to Pray!

A couple of weeks ago, my chronically ill son, Peter hit the skids with a sodium level that was so alarmingly low, he was expected to have seizures. We hear this can be typical for chronic Lyme patients on long term IV antibiotics, but that made it no less alarming. We raced him to a nearby, (albeit substandard, ER), where he was given IV fluids and loaded with sodium. He then needed to be admitted and transported to a real hospital by ambulance. Understand that for his dad and for me, being in an ER is no easy feat. I mean, of course it’s not, for anyone. But, for us, it brings with it a whole slew of trauma triggers and it is an exhausting fight to maintain presence and not slip away to that dreadful night in 1995 when our then youngest son, Gregory, died. To this day, I still fight nausea when I see a racing ambulance and forever, the sight of vitals bleeping away from an IV sends me into a panic. But, with hard work, we can now differentiate and know that we are here with Peter, 16 years later and things are fairly stable.

So, Peter was admitted to Duke Raleigh hospital (a wise and self preserving choice made by dear husband, Shep as it is so much closer for us to get to) and I actually went to work for a few hours while this transfer took place. When I was done with work, I came and sat in a chair in Peter’s room where I stayed for most of the next day and a half. Peter convinced me to go home and sleep which I did, but other than that, I stayed. I spent a lot of time just staring at his ashen face, his emaciated body, his long stringy unkempt hair, his exhaustion that he describes as being “deep in his bones.” I stared wondering what had happened to the last few years of this brilliant, charismatic life that I had watched unfold with such pleasure and pride. Did I curse him in some superstitious way by always saying, “Ah, Peter has the Midas touch. Everything he does, everywhere he goes, everything he tries, turns to gold.” It was true though. He was so successful every step of the way, straight A’s all through school including the two years when he succumbed to deep, grief related depression. He was captain of every sports team in high school, won all the awards he could, including a totally free ride to NCSU Parks Scholarship program. He landed a summer internship with the NFL where he became so beloved that they pleaded with him to stay when summer ended. So, he stayed for a whole year before deciding he wanted to go to Harvard instead of back to NC State University and sure enough — he got in and soared through Harvard, graduating with honors. When he wanted to experience the NBA, he did, landing another summer internship! And then, after graduation, he became a very successful business consultant in Boston. His future held only the best of everything and he was star bound, although unlike many stars, Peter really had a deep heart and social justice commitment as well. The perfect combination!

So, when I sat watching him, I thought of all those things and more. I tried hard to get work done on my computer. I read Real Simple from cover to cover, vowing to be more organized. I went to eat lunch in the cafeteria and being horrified at the unhealthy offerings, left and hit Trader Joe’s. Then I , brought back with me as many salty snacks as I could fit in my canvas bag to pump Peter full of more salt. Peter and I laughed with horror at the food on his meal trays which ranged from yellow jello to a dark grayish “raspberry” sorbet to mystery meat to artificial sweetener included with all. How could the healthiest of us ever recover given a diet like this? Where was Jamie Oliver at a time like this? As usual, Peter and I vowed to work on making healthy hospitals sometime, someday. But, I wondered, “When? When will my boy get back to changing the world?” We were then told that he could not be discharged until he ate meals and walked up the hallway. Until then, all Peter was doing, all he had the energy to do, was sleep. But, one more look at the yellow Jello and we said, “Okay, we have to get out of here.” And so, he ate what he could and we made three painfully slow walks up and back to the nurses station. His stats were better enough so that by the second night, we got our ticket out of jail. Whew.

When I was in church the next morning, I had this sudden, shocking thought. Through the whole 48 hour incident, I believe I had forgotten to pray!! I wondered how this could have possibly have happened. I beat myself up for awhile. I questioned my faith and then my commitment to it, to my family, to myself. WHAT was I thinking? How did I forget to at least chant the Anne Lammott prayer of “Help me, help me, help me!” No “Lord’s Prayer? Nothing? I don’t know… I really don’t know how I lost my way and forgot to at least chat with the God I know is always with me. But perhaps, that is just it. I don’t need to call upon him, he is there. And maybe, I really was praying all along. Bearing witness, showing up, being there, not leaving, asking the doctor questions, encouraging my patient. Maybe, staring at my son feeling the deepest, most intense love and compassion that is available to us as humans, is in fact, prayer. My love running so deep from my heart to his, is this prayer at its heart? I am there. I am present. I show up. I have prayed.

Mother Mary Can You Help Me? Help my Son?

My son, Peter, the Chronic Lyme sufferer, is now in what he says is “the worse pain he has ever felt in his entire life.” He cannot sleep, he can barely eat, and writhes in bed all day and night. He cannot stand it much longer despite the 42 meds per day that he swallows. Those are in addition to his PICC line administered IV mega-antibiotics and intramuscular shots of morphine with still, no relief. I cannot stand this much longer either. I am sick with the yearning, the begging, the pleading with Jesus Christ at the very least, for relief for my son. Mary, Mary, you know. I know you know. Can you help, short of death, or is that the only distance you know for pain and suffering? I have already given up one son. I cannot lose another.

What is it I need to do? What do I need to not do? What do I need to know? What am I missing? I pray so hard that my teeth clench. I went to the Lenten series last night at my new high falutin’ church with soul. I sat, I kneeled, I buried my face in my hands. I listened to the heartfelt music, some hymns, some more modern sweetness and one rendition of that angelic girl in the heart wrenching movie, In America, singing, “Desperado.” It made me cry once again. If everyone wasn’t so perfectly dressed and coifed in that church, I might have considered (for more than a moment), throwing myself on the marble floor and wailing, sobbing, and begging out loud for God’s mercy on my son. I try different words in my prayers. I try bartering. I try being firm and I try allowing my weakest self to beg shamelessly. My son gets worse instead of better. God, can you not hear me? I am screaming? So many are praying. Still, still, still. Help me, help me, help me…. as Anne Lamott would pray.

Yesterday — I stared at my son sitting in the medical office for his exam to qualify for disability. I cringed with sadness at his unwashed hair, his messy clothes, his emaciated body that was once that of a star athlete – captain of every high school sports team. I stare at him, mostly in disbelief, wondering how on earth he could have gotten to this limp, devastated state at 26 years old. How, how, how?

Today –changing meds, changing pain killers at the direction of a seemingly very smart pain specialist, invites some withdrawal into the picture. That makes the pain worse while getting off the high doses of opiates switching to lower doses of methadone which one can only increase at a slow and safe rate. She says, “I can’t increase the methadone faster because I could kill you.” I wince. Adding more sleep meds now, the doc suggests we “listen at night to be sure he isn’t having sleep apneas. Check for deep snoring, or irregular breathing. Get a baby monitor and take shifts with your husband to be sure your son is breathing.” Great. I am already barely sleeping. I am in that constant, itchy, someone-please-rip-my-skin-off state. I now need to listen for breathing patterns. My son mentions that this will drive his mother crazy. “She is your mother. That is what mother’s do.” Doesn’t every mother have a breaking point or are we made of something other than normal blood and guts?

Which is worse? Being in searing relentless physical pain yourself or watching your child, the one you love with all your heart and soul, in that pain? Has anyone ever answered that question? Mother Mary come to me, bringing words of wisdom, let it be.

Lyme Disease and its dominant role in our family

My son, Peter has been suffering with Chronic Lyme disease for months now. He is 25 years old and was a healthy, succesful business consultant, in Boston. He now lives at home with us in Raleigh, NC and spends most of his days on the red sectional in our living room, in pain. Mostly, it is intense leg pain and some headaches and other ghastly pains. We have been to see the Lyme gurus, aka Lyme Literate doctors and have gotten various protocols, but the current one he is following, is high doses of Tetracycline with not much else in the way of supplements, so as not to feed the Lyme spirochetes.

I have begun to wonder, how this will ever end, how he will gain the lost 35 pounds back, get another job, find a girlfriend and rebuild his life. Then, I wonder how one poppy seed size critter could have wrecked this much havoc on his life and ours as we bear witness with broken hearts. What life lesson is there to be learned here? He is the brightest, funniest guy you could ever want to meet and one wonders, what this is really all about?