Does a positive attitude help when your chronic illness becomes worse?
(published at Helium.com)
Yay Though, I Walk
Several weeks ago I returned to my neurologist’s office for an adjusted diagnosis following my most recent MRI. I had begun to notice a searing pain in my upper thigh/groin area sometime before Christmas and thought perhaps it was connected somehow to knee repair surgery I’d had in early December. The knee surgeon found this highly unlikely, so I turned to my OB/Gyn doctor for my annual exam. It was perfect. Their office urged me to see the MS folks. Finally, thinking it an absurd waste of more time and appointment waiting, I did. I endured ultra sounds (two) and the ever-fun electrocution type thing they do to stimulate one’s nerves. It sets mine on edge, the nerve conduction study. I passed all of these tests like I usually did my final exams in college, with flying colors. Then the MRI. I was so unconcerned about it (still wanting this to be somehow connected to the nerve block the knee surgeon had done once I was asleep and learned about only after it wore off) I forgot to order a Valium or two to fight the claustrophobia I always feel inside the coffin of the MRI clunker chamber.
I should have known when the PA would not look me in the eye, and when a trail of medical students followed her into the room (I said I didn’t mind) all toting notepads, that the news was not going to be good. I simply was not prepared after surviving and sometimes even thriving during seven full out years of relapsing/remitting MS to hear that I had graduated to a new kind. I’m used to lesions in my brain and neck. I was unprepared, however, to hear her say that they have now taken up residence in every sector of my spine, including my sacrum, accounting for the knife-stabbing pain in my most private places.
“Gail, what are you really saying?” I probed. “This too shall pass, right? Like the blindness? Like the time I couldn’t feel the bottoms of my feet? Like the time my left arm played dead for three months?”
Again, Gail stared at the floor. In the meekest voice I’ve ever heard the woman use, she said simply, “I’m so sorry Ms. Hillard, but your MS has progressed to rapidly progressive MS.” Not knowing the latest lingo, I asked, “Secondary or Primary?” She said I should really wait and ask the doctor about that.
“So it’s primary then,” I lobbed.
Her head jerked up, her eyes meeting mine, “Why do you say that?”
“Simple. You just delivered the bad news. If there was good news/bad news, you would want to tell me, especially in front of these students. Therefore, it has to be bad news/bad news so you’d rather not say.”
I limped to my car, my knee and groin still smarting, and calmly unlocked it, inserted the key, put the top down (I drive a French vanilla ice cream color new VW convertible because it makes me happy and seems to have the same affect on other drivers, a big smile crossing its hood and smiley headlights), backed out of the garage and called my mother. Then I burst into tears.
Now please understand, I am simply not a person who feels sorry for herself. An old friend once gave me her cane (she overcame MS after having it for 20 years) and I accepted it as a good luck token and because it had a round ball top that half unscrewed to reveal a compass and all the way unscrewed to reveal a tiny flask. I thought it might come in handy on a few counts if ever it came to that. It never has, including the knee surgery. I spent most of my life as a runner. Hence the rotten knees requiring arthroscopic tune-up. Now I am a walker. I walk through things. I walk past things. I walk onto and off of airplanes, even after I fell while visiting a sister in Spokane and actually fractured my left kneecap on Good Friday. Yes, the same one I’d just had fixed, darn it all. But even on crutches, I decline wheelchairs. I am, I submit once more, a walker. The other reason I accepted the cane, never believing I’d actually NEED it, was because I wanted Patty’s good fortune to rub off on me. I wanted the MS to leave me miraculously.
A few nights after the grim doctor appointment my daughter (age ten) and I were up late on a Friday night watching Dr. House on cable. He had a teenage patient whom they suspected had rapidly progressive MS. Dr. House lamented in his acerbic way that it was “not the fun kind of MS with the 10k’s and the bike rides and the balloons for the gimps in wheelchairs, but the serious, zero to sixty in a few months, then in a chair, then on a respirator, then in the ground.” I may be paraphrasing slightly, but I doubt House would mind.
I actually used that line about being grateful for the “fun kind” of MS these past seven years, as they have been a blessing in disguise in many ways to me who always ran through life. I was a single mom from about four minutes after Olivia’s conception. I taught high school English full-time. I also helped start a program for teachers to earn their Masters degrees in partnership with Arizona State University and the school systems in the Phoenix area. I taught three classes in that program for several years, often on six consecutive, long weekends. Sometimes I taught my research class on the main campus. Two nights a week I taught public speaking at a local community college. Usually I taught summer school. I wrote articles. I did school research and published it. Like I said, I ran. After the MS caused me complete and total double vision, I had to stop. If I continued running and working full-time, I would go blind I was told by the noted authority on MS at Georgetown Hospital.
I say it was a blessing because of the following reasons:
1. for the first time in her life of 3 years after I was diagnosed, when Olivia told me from her car seat that she needed to go potty, I did not distract her with the Barney song, or the ABC song, or Veggie Tales, or have her count how many numbers she could remember until we got to the child care provider. I turned around and said to my little girl, “Well, we better find the closest clean bathroom we can.” It hit me in that moment that I had a pre-schooler and not a baby and I needed to slow down and savor each moment I could with her. We pulled into the next McDonald’s and didn’t even have to count.
2. all my massive student loans from a PhD program at an Ivy League University were forgiven the moment social security deemed me truly disabled.
3. I get really good parking places.
4. I had a reason for feeling so tired when I shouldn’t be and for beginning to take better care of myself. Like taking a nap when Olivia did. Then I had energy stored up for an evening WALK and her bath and dinner and bedtime stories. I even danced in wacky ways to make her laugh. I’ve not claimed to be a dancer, please note. But my child, at least then, found me funny. Now in the fourth grade not so much so. I was wearing Tommy jeans one day with a really neat turquoise tie-dyed Harley shirt I got at the state fair and asked two girls at Olivia’s school if that was okay, or if Harley and Tommy canceled each other out in the fashion world. The girls laughed and so did I. Walking her to class, Olivia said, “Mama, PLEASE don’t talk to the teenagers. It’s so embarrassing.” So, I guess, MS aside, I’ve arrived at that parental pinnacle to which all parents eventually climb: perfecting the art of embarrassing our children (just another service we lovingly provide). I told her that the teenagers weren’t embarrassed. I wasn’t embarrassed. It seemed only she, Olivia, had a problem with social exchanges.
I digress, and I apologize. Back to the blessings MS has provided me through the back door of my life:
5. I have all my life wanted to be a writer. I once rented a hotel room and took my electric Smith Corona there with a ream of good cotton paper, a sweater I’d found in an ugly yellowish brown but it had leather patches on the elbows and so qualified in my opinion as Writer Wear. This was a few months after I’d graduated from college. I even bought a pack of Marlboro’s, though I am not and have never been a smoker; but writers like Ernest Hemingway often did, so I thought I’d try it if a slump hit me. I sat in that room balling up the worst opening lines and titles imaginable and tossing them about me to the floor.
At 21, I had no perspective on life experience and mine had been limited to a breezy, fun life. I got good grades. I had plenty of friends whose parents even liked me. I was Student Body President of a huge high school, voted most likely to succeed. I was even, if you’ll indulge me, the Homecoming Queen in 1981 at A.S.U. I was the girl every mom wanted her son to marry. I was in the right sorority (Delta Gamma) and we raised money to buy a guide dog for a blind ASU student every year. My parents were still married to each other and loved all of us, if me a bit more than my siblings. Smile. If I interviewed for a committee or honor society, I got in. If I asked for a letter of recommendation, every professor I had offered to write one, well, except for my anthropology professor whose car I once waxed and then wrote a poem for on the back of a monkey poster to bring my shameful C+ up to a B+. It worked. But that is not the stuff of life experience. I had to smoke the whole pack that weekend. I wrote not a single word but instead prayed for some rich life experience.
Sidebar: Be careful what you pray for. Mine was answered in triplicate for the next 25 years of my life. Stop already, God. Enough already. I have at least a dozen books in me now, maybe more.
6. MS afforded me the time to be not only a full-time mother to my child, but a better daughter, sister, friend, and member of the community. It also allowed me to write articles and poems and get them published. Life experience sadly took me down very, very close to the Valley of the Shadow of Death when mine wasn’t easy any longer and I just couldn’t be the perfect preacher’s kid anymore. I spent less than a year of my life addicted to cocaine at the tail end of my doctoral program. It was brutal. I was “mostly dead” though Billy Crystal in The Princess Bride has seen worse. I was 84 pounds and sported a hemoglobin count of two (AIDS patients die at four, I’m told), suffered 3 weeks on the burn unit as they ripped the dead tissue from my arms and my legs. I endured 31 operations and 13 weeks in the hospital and STILL found ways to sneak the one coke dealer I knew in Phoenix (after two good friends muscled me onto a plane home from Philadelphia to my parents in Phoenix) into the hospital and had saved enough carelessly tossed aside or unused syringes in a pillow case in the air conditioner vent of my bathroom to inject her product straight into the catheter running from my chest tubes directly into my heart. Life experience? In spades, though it was closer to death experience. It’s a place I dare not visit again and certainly don’t recommend it as the pivotal point in an aspiring writer’s career or life-gathering experiences. I finally got out of God’s way and told of the miracles He brought into my life. I wrote a book about it in two weeks last fall, a dozen years after my return to life, and published it two months later. It is called The Other Woman at the Well: a truthful accounting of addiction overcome. I have a website through the kindness of my chiropractor called www.judithannhillard.com or www.addictionovercome.com. I have begun to travel and speak about my book and my experience with addiction both professionally (some of the MS’s after my name are advanced degrees, one of which is in counseling wherein I wrote my thesis on recognizing addiction in adolescents). This is actually working. God is using the biggest mess I ever made of my life and turning it into the most profound message I’ve ever delivered. Kids and parents, grandparents and teachers sit up and listen to me when I tell my story of certain death and divine intervention. That built-in, factory-equipped baloney detector kids arrive on the planet with understands that this is no D.A.R.E. officer who may arrest them if they tell the truth, nor is it a president’s wife who just says no, neither of whom have ever tried drugs and are therefore relegated to the talk of all grown-ups in the Peanuts cartoons on television, “Wahhhh, wahhhh, waw, waaaaahhh” Me, they believe because I research what they’re doing and I’ve been there. I explain about the “pharm” parties that are killing their classmates and advise the adults not to store any prescriptions that say on the label “Do not drive or operate dangerous machinery” in their medicine cabinets, night stands, or beside the vitamins in the kitchen. Really sneaky addicts (and most of us are) will just empty your old prescriptions into our pockets very deftly and replenish your empty bottle with your ibuprofen or vitamin C. You don’t know what your pills look like. Your kids do. Yes, they listen to me because they recognize truth when they hear it and see it.
I never thought this would be my mission. I never saw myself ministering to hurting people. But MS has allowed me to do just that. I’m even partway through my second book, which will be for parents and caregivers and tell them how to recognize the signs of addiction in their charges and then what to realistically do about it. This is like a dream life; one I want to walk and run and dance to.
It is inconceivable to me that God can get me through that heinous year and allow me to live to tell about it only to hobble me with something as droll as MS. I am a woman on a crusade today. If I can save one life or bring hope to a family who has lost theirs, then all the pain and all the shame, all the ugliness and scars are worth it. I’m doing my part. I’m walking the walk and talking the talk.
So, I’m no longer relying on the ABC drugs to keep me safe. Obviously, I cannot live out my life on painkillers. I am doing radical things with my diet (look up the Hallelujah Diet) and you’ll see what I mean. First of all, they don’t work on me unless I take a handful, and then I break out in hives that itch so badly I would gladly exchange them for the pain I was trying to kill. Or, they have to give me like 8 mg tablets of Dilaudid to do a bit of good. And then I’m functionally comatose, if that is not an oxymoron. At any rate, on any such substance, I AM a moron. Today I choose not to live like that.
I refuse to go from zero to sixty in two years. I refuse to stop walking, even though I limp today and will again tomorrow. I lost Patty’s cane somewhere in a move and refuse to buy one of those orthopedic aluminum ones that screams out “old lady in the making.” Maybe at the next craft show I attend I’ll run across a really cool one with another hidden flask. Maybe I’ll decide to keep it in my umbrella basket in case someone ever needs it.
Yay! Though I walk through the valley, I shall fear NO MS. I shall take myself now to bed as it is one o’clock in the morning and I do best on 8 hours of sleep. I’ll take Olivia to school at 7:30 and then go on to physical therapy for my broken knee. It will help because I will let it help. Friday morning I am the keynote speaker for a 7 a.m. huge Rotary Club to which my father belongs. These days, no matter how my body feels, my mind has decided to show up. And you know what? When I show up, something miraculous and beautiful generally happens and if I don’t show up, it probably still does. I’m just not there to savor it.