Saturday, November 5, 2011

The Death Of Dreams

Although Jim and I were happily married, there was one year in particular when I thought we might split up. We argued all the time. The year was 1986 and it was becoming more and more obvious to me that there was something drastically wrong with my husband. His typical "sailor on a ship" walk had changed to one of short, straight steps. Along with that, his arms would no longer swing as he walked, but hang motionless at his side. What's more, his left leg trembled uncontrollably during parts of each day. The symptoms grew worse if he became stressed.

He was a regular jogger, every day coming home from work, changing clothes and hitting the streets for at least an hour. One day he informed me his left leg had been cramping up, so he was going to switch from jogging to riding his bike. I tried to get him to see our long-time family doctor but he stubbornly insisted nothing was wrong and I started to wonder if my mind was inventing problems that didn't actually exist.

About six months after the left leg began seizing, his left shoulder started hurting and since Jim never complained about pain, I took him seriously. "Go to the doctor," I told him. He finally did, though for no other reason than to get me off his back. He came home with a good report. Nothing wrong. The leg was cramping during jogging because of a pulled muscle; the shoulder was hurting because Jim had strained it helping our son-in-law moved a large couch into a second story apartment. Jim and our family doctor had come up with a reason for everything. Case closed.

But I had this growing suspicion in the pit of my stomach that said the diagnosis was wrong. Jim's left leg began trembling more often and so did his left hand. I suspected a neurological disease but didn't want to speak the words out loud. Months passed. We continued disagreeing on whether Jim was alright. By the time 1986 was almost over, Jim's leg spasms had become nearly uncontrollable, as had the trembling in his left hand. He got to the point where he could no longer ride his bike around town, and a couple of times, ended up having to walk it home. Because Jim used exercise as a stress relief from his job, he wanted a stationary bike. We began looking around and finally bought one. When I suggested he should see the doctor again, he fought me, insisting I was hunting for problems where none existed.

We went on like that until early in 1987. Never in our married life had we had so many disagreements and it took a toll on me and I'm sure it did the same to Jim. Our easiness with one another suffered. Our hours-long chatting nearly ceased. A few months into that year, I called our doctor and questioned him about the diagnosis he'd given Jim. He explained exactly what Jim had told me. I listened politely, then told him he was wrong. "I've been married to this man for over thirty years," I said, "and I know something is wrong with him. If you can't diagnose it, then send Jim to someone who can."

Late that afternoon, I received a call from a well-known neurosurgeon's office. The doctor wanted to see Jim the next day. I instantly felt sick to my stomach. I went ahead and made the appointment without consulting Jim, then called our family doctor for added information. He told me he'd conferred with the neurosurgeon and the specialist's consensus was that Jim could be suffering from either a fast-growing brain tumor or Parkinson's disease.

I was too stunned to cry. I was too stunned to pray. I sat down at the kitchen table and told the Lord I didn't know what to say. I didn't know how to pray. I didn't know what to think. I didn't want Jim to have a brain tumor. I didn't want him to have Parkinson's disease. Why were there only two choices?  And both of them bad? Jim had just turned fifty-two. Too young to be stricken with any disease, let alone what many, including myself, had long considered to be an old person's complaint. Parkinson's. The worst was, it was what I had secretly suspected for a long time, all along hoping I was wrong.

The neurosurgeon put Jim through a battery of tests. No brain tumor. No other neurological disease. That left Parkinson's, diagnosed only by ruling out everything else. The surgeon recommended Jim see a neurologist. We went together, asked every question we could think of and the doctor started Jim on Parkinson's medicine, stating that if the diagnosis was incorrect, the meds wouldn't make any difference in Jim's symptoms. The meds dramatically changed Jim back to near normal. We now knew what we were dealing with. It was the beginning of a more than twenty-year uphill battle fighting a progressive and incurable disease that Jim determined would not take charge of his life.

The first thing that dawned on me is that when one of the mates has a debilitating disease, both have it. I wasn't the one dealing with the off-times leg shaking and hand twitching, but the disease affected me in ways I'd never thought of. I read everything I could find on Parkinson's disease. It was slow moving. It was medically treatable, especially in the early years; less so in the latter years. It was a disease that would eventually lead to impotence, slurred speech, loss of body function control, possible Lewy Body dementia, a wheelchair, and in the last stages, bedridden. The stages would come slowly. And not in perfect order. But they would come.

I kept a stiff upper lip for a long time, encouraging Jim that there was nothing we couldn't handle together. I continually reminded him that the Lord was in control and wanted only the best for Jim as His child and us as a couple. I saw him cry only once and that was shortly after the diagnosis. He was sitting on the couch; I was in the chair opposite him. We were casually chatting when he suddenly put his head in his hands and began weeping. "All of our plans to travel when I retire are gone," he said. "I'm so sorry, Sandy. I wouldn't blame you if you wanted to leave."  I went to sit beside him and put my arms around him. "I will never leave you. I promise," is what I said. Tears silently rolled down my face. It was so like him to always think of me first. How could I abandon the one I loved most in all the world? "No matter what, you're stuck with me,"  is what I said. It would be my mantra for the rest of our lives together.

I held myself in check for a long time. Jim was still able to work and as he traveled for the company on occasion, there was a trip to Portland, Maine on the schedule. We decided to make it a vacation and Jim's secretary booked my flight along with making the arrangements for Jim's hotel and transportation for the three days the conference would be held. After that, Jim and I were on our own. I was excited to be headed to the east coast. I'd not been there since childhood. I had great plans for everything we would see and do. I never knew whether it was the travel writer in me or the wife who wanted to show Jim around someplace he'd never been.

Jim and I flew out of San Diego, changed planes in Philadelphia and just as we were coming into Portland, the oddest thing happened to me and to this day I still can't explain the why of it. As our plane began leveling out to land, the full force of how much Jim's disease would eventually affect us landed on me. It rose up inside me like a volcanic explosion, nearly uncontrollable. I felt great, gulping sobs forming inside me. Mental anguish overtook my feelings and spread into my whole being. "Why, God?" I prayed silently. "Why now in a plane filled with strangers? Why does this come upon me here and now?"

I didn't receive an answer. I still don't know why the full knowledge of how Parkinson's would alter our lives dawned on me at that particular moment. What I do know is that the Lord helped me keep things together all through de-planing, car pick-up, and hotel registration. I held myself together till we were in our room. Then I told Jim that I felt so travel weary that I thought I'd take a long, relaxing bath before supper. He turned on the television to catch the news. I went into the bathroom, turned the faucet on full blast, and sobbed until there were no tears left.

That was the day I fully understood what this disease would cost us as a couple. That was the day I began mourning the death of our dreams.

Author's comments:

Dreams don't necessarily die all at once. When a disease is slow moving, dreams fashioned together as a healthy young couple, begin expiring along the twists and bends of the path one is forced to walk. For as long as I could remember, we'd planned on travelling six months out of every year, stopping where we wished and for as long as we wished. From our first days together, Jim had been a saver, relegating every penny possible into stock in the company he worked for. When he retired, he would receive his own contributions, plus the company would add fifty cents to every dollar saved and upon retirement, the whole package would be Jim's  to do with as he pleased.

We were pleased to see the world. But that isn't what happened. In the end, much of the money went to pay for caregivers, for the time came when I was too exhausted to carry on alone and in addition, I'd become ill myself and had ended up in emergency surgery--not once, but twice. All in the period of one year.

I distinctly remember when our first dream died. It was the day I realized that if we wanted to travel, it would have to be before Jim could no longer drive or get around easily. I knew the time would come sooner rather than later and I sat on the couch late one night and cried myself nearly to sleep. With Jim still able to work, I knew vacations would be spent in week or two increments and while we did take a cruise to Alaska, our intents to travel the globe were gone. I'd planned on that almost my whole married life. We both had. If it hurt me, I knew it hurt Jim. I showed it; he didn't. My conservative husband, always staunch. Was he strong for me or is that just how he was? I never knew for sure.

The day intimacy died is still emblazoned on my heart. How we loved one another and with the disease progressing, more medications and stronger doses were the game plan to keep Jim moving. By now, he'd had to go off on sick leave from work, turning his job over to his next-in-charge, whom he'd worked diligently to train. Jim and I sought out a specialist in all things pertaining to intimacy and after a long examination, the doctor's suggestion was to cut back on Jim's meds. That would resolve the problem. It wasn't an option. Jim could either get around, walk, feed himself, dress himself, or sit in a chair completely Parkinsonian, unable to move or do. I left the choice to him. He chose to live an active life. I agreed. We took a cruise to Mexico. We took our three oldest grandkids with us.

If not for the Lord's faithfulness, I would never have learned how deep and abiding love can be. I thought I knew. I didn't. What I learned is that laying next to one another, touching, kissing, speaking love to each other's ears, gave a comfort to each of us that I would never have learned had it not been for the impotency. I believe God worked in both of us, showing us that although intimacy was given of the Lord, when it was no longer possible, God would make a way where there seemed to be no way. For the last six years of our life together, we remained close and loving. Only the Lord could have effected that in both Jim and I.

Little by little, we gave up our dreams and goals, letting them die by the wayside. One day I questioned Jim if he ever felt anger concerning the direction his life had taken. He looked at me like I'd lost my mind. "Why would you ask that?" he said. I mentioned the disease and the things we could no longer do. He shook his head, turned those blue eyes on me and said, "I don't wallow in it. I can't change it. I can't do anything to fix it. I use all my energy to get on with the life I've been dealt and live the best way possible." I wondered if I would have come to that had it been me. Probably not. I'm a complainer. Jim never was.

As I look back at those Parkinson's years of our life together, I see God's wisdom taking hold of our days and years. He knows my way and He knew it while I was yet in my mother's womb, so He says in scripture. He knows I am a wimp, falling to pieces when stress overcomes me. He knows I can't handle more than two things going wrong at the same time. He knows that others see me as being strong but the truth is that only as I hold onto Christ can I face any kind of trauma. He knows I constantly flunk the life testings sent my way and only get a passing grade when I give up going my own direction and purposely set my face toward the Lord.

As Jim and I faced the death of our dreams, he got A's. I didn't. In my heart, I believe Jim was ready for heaven. I wasn't. I think that is why I'm still here, writing what I've learned on the journey I've been assigned. Perhaps when I stop dragging my heels, I'll get passing grades. Perhaps when I have taken hold of the stubbornness inside me, I'll graduate to heaven with Jim. In the meantime, I plug away, day by day, trying to share that which I know with anyone who wants to learn without having to deal with it the hard way. It's what I always told my own children: "If you'd do as I say, you wouldn't have to learn things the hard way." They never listened. What on earth ever made me think I was different?

"But we have this treasure in earthen vessels, that the excellence of the power may be of God and not of us. We are hard-pressed on every side, yet not crushed; we are perplexed, but not in despair; persecuted, but not forsaken; struck down, but not destroyed." 
 2 Corinthians 4: 7, 8

He alone knew I could not face the death of my dreams all at once. One at a time was hard enough. I will always be thankful that the Lord never laid on me more than I could bear at any one moment.


  1. Once again, you've had me in tears. I've been remembering when my dad was diagnosed with Parkinsons and I can't help but wonder what dreams he saw slip away slowly. Sadly, I cannot ask him now.

    The nice thing about me having a chronic illness is that I can more easily identify with my father. When I was young I dreamt of helping children by becoming a teacher or a child psychologist. I did well in school and went to study at a university. While I studied, I also did volunteer work at a local high school and enjoyed it tremendously. I was on my way but life had other things in store for me... I graduated with a degree in History and French and I started applying for graduate courses to do teacher-training. It was then that I met my first husband and I was whisked away to England. Initially I got a job in an office because we needed the money but I never gave up my dreams of becoming a teacher.

    Then in 2005 I was diagnosed with endometriosis and it meant that I would have to re-adjust my life. I've had to be realistic with my dreams: I will never have children. I won't be able to become a teacher - it's just not financially or physically achievable.

    Despite the loss of my dreams, I am happy. I've been very lucky that, as some dreams have died, others have taken their place. Now I dream of a cure and I regularly work to make people aware of my illnesses. Not only am I not a teacher, but I cannot have children of my own but am delighted that I have two great step-kids that I spoil as often as I can. God has taught me to be grateful for what His plan is for me. It was a lesson I resisted and the longer I resisted, the longer I had to wait for peace.

    Wishing you peace
    Your friend

  2. Grief, something none of us wants to experience in life, but inevitable. Thanks for sharing such a difficult time. One that proves to be healing and necessary to move ahead. I'm a care giver so I can empathize with your loss. It's so hard. Blessings to you my friend, be encouraged that the Lord is indeed with you, is your strength and still has plans and purposes for you.