Dealing with an Unwelcome Diagnosis

By Douglas K. Lemon

Yes, I had a progressive, irreversible disease. But that didn’t mean my life was already over.

My wife, Alice Mae, and I were serving as senior missionaries in Philadelphia, Pennsylvania, USA. We were in the next-to-last month of our mission when the degradation of my motor skills became too much to ignore. Following the advice of the mission doctor and nurse, I went to a local hospital.

I had an EKG and a CT scan. Then a neurologist met with me. She asked more questions and did more tests. Finally, to my surprise, she said, “Mr. Lemon, you have Parkinson’s disease.” It was not a diagnosis I expected, and it was certainly not a diagnosis that I wanted. But what could I do?

Four Phases

That was two years ago, and it started a process I have since grouped into four phases. I share them here hoping they may be helpful to others who are dealing with an unwelcome diagnosis. Here are some of the things I have learned.

1. Learn about the disease.

I searched online. I bought some books. I met with another neurologist. I wanted to know what impact Parkinson’s disease (PD) might have on my life span and ability to function. As I gathered information, I also prayed for guidance. I knew that Heavenly Father and Jesus Christ would help me to get the information and medical help I needed. I learned that PD doesn’t typically affect how long you live, but it does affect what you can do. It progresses differently from individual to individual. It gets worse over time. It is not curable.

2. Adapt and reset expectations.

Once the shock of the initial diagnosis passed, I gradually began to realize the disease was not going to go away. My wife and I talked about our future and what it would mean if I were to lose some of my mobility. What would happen if I couldn’t drive or walk? In one tender moment when I posed those questions to my dear wife, she answered simply and without hesitation, “Then I will take care of you.”

We were grateful we hadn’t waited to serve the Lord as full-time missionaries and that we had been able to serve while our health was still good. We were also grateful that we had moved into a smaller home with no stairs on the main floor, mostly hard floors rather than carpet, and grab bars near all the toilets and showers. We felt that the Lord had known we would need such a home someday and had prepared a way so that when we needed it, it was ready.

3. Deal with the sense of loss and grief.

During the next few months, I spent a lot of time at home and had plenty of time to think. I grieved for the loss of the person I thought I would be in my later years. I grieved for the future that my wife and I had previously envisioned. I endured days of discouragement. I prayed a lot as my symptoms grew worse. My need to find positive ways of coping increased.

Then the Lord provided an unexpected source of support. My wife and I were called to be our ward’s welfare and self-reliance specialists. As part of our calling, we facilitated a group meeting on emotional resilience. I had not thought about needing the class personally. However, by the end of the first meeting, I thought, “Wow! This is for me!” We talked about avoiding negative thought patterns, being positive, controlling our feelings. It gave me some practical tools that, over time, helped me—and my wife as well—to develop a healthy attitude toward my disease.

4. Learn from this trial.

I remember thinking one day, “If I was going to pick a disease for me, this would be the one.” Because at this point it doesn’t shorten my life, but it forces me to submit to the will of God. It’s given me no choice but to accept that, and that’s been a blessing. I am calmer, more at peace. I had always lived too much in the future, concerned about what the next chapter of my life would be. Parkinson’s disease has helped me to be content to live in the present, to do the good that I can do now. Gradually, I have learned to submit myself and my future to the Lord more completely and without reservation.

I studied scriptures that talk about growing from trials.¹ I re-read talks and articles by Elder Neal A. Maxwell (1926–2004) of the Quorum of the Twelve Apostles.² I remembered an address in which Elder Richard G. Scott (1928–2015) of the Quorum of the Twelve Apostles counseled us in times of trial not to ask, “Why do I have to suffer this?” but rather “What am I to learn from this experience?”³

Throughout this process, I have found a level of peace, joy, and contentment that had previously eluded me. I’ve come to see that death and passing through the veil is just another “transfer” on my journey along the covenant path. It is part of God’s plan of happiness.

I made a small sign on my computer and put it on the wall of my home office where I see it every day. It says, “Be Good. Do Good. Be Content. Relax and Trust the Lord.”

Trust in the Lord

Today, at this point in the progression of the disease, I carry on a fairly normal life. I can still drive a car. We were recently called as temple workers. There are things I can do and things that I can’t. I walk with a cane when I leave the house. I get emotional over small things but also have become more sensitive to the needs of others. I’m not sure how my future will unfold, but I have the reassurance that whatever happens, the Lord will help me to endure it well and to find joy. It’s been a good tutoring for me, and I don’t want to miss the lesson.⁴

The author lives in Utah, USA.

Your Diagnosis Affects Others

Spouses of those who experience an unwanted diagnosis may experience many of the same reactions and feelings as their husband or wife. Remember, the spouse’s life changes too. “It’s been a blessing for us to talk about the coming changes and how to be at peace with them,” says Doug’s wife, Alice Mae.
When a parent receives a life-changing medical diagnosis, it is hard on their children too. “We have five sons we are very close to,” Doug says. “They said it was hard for them when we told them about my diagnosis. One of them expressed what they were all feeling when he said, ‘We always thought you were Superman and would never change. Now we see that you are vulnerable and won’t always be able to do everything.’”
Most people simply don’t know what to say or how to express empathy, so be patient with them. Doug says, “I appreciate those who have said something simple like, ‘I’m so sorry. That must be hard for you.’”