This article was originally published by The Mennonite

Living with a degenerative disease without losing heart

Photo: Michael Meneses serves Communion. Photo provided by the author.

This article comes from the November issue of The Mennonite, which focuses on “Health care.” Read more reflections online or subscribe to receive more original features in your inbox each month.

How do you stay motivated when you have little energy and constantly feel tired and weak? What do you do when you feel less and less capable of putting out high-quality work? What does your life mean when there is a reduction of your usefulness or capacity for service? How do you keep from losing heart and avoid depression? Given my condition, What’s the meaning of life? is no longer theoretical. It is particular and specific: What’s the meaning of my life? Or what’s my purpose? Why should I live? That’s where a degenerative disease takes a person. What I have is not fatal, but it is all encompassing.

The actor Michael J. Fox was only 29 in early 1991 when he was diagnosed with Parkinson’s disease. Earlier this year, I learned that I have what he has—PD. To date, there is no cure. Furthermore, it is degenerative. Anyone living with a lifelong, degenerative disease must know that awful feeling, when the realization hits you: This is never going to end, and it’s only going to get worse.

I’m only just beginning to learn about Parkinson’s. For example, PD hits each individual differently; it’s not monolithic. There are well-known symptoms, but each individual’s experience of PD is unique, with varying symptoms. It both affects and is affected by other health issues, such as spinal stenosis or urological or cardiovascular problems or sleep disorders. So there are various ways PD might express itself in a person. No wonder it may actually take years before a person is finally diagnosed with it.

Thankfully, there are medications for PD, but many of these pills have uncomfortable or undesirable side effects, and none of them brings you back to normalcy, the way you felt before the onslaught of the disease. Also there are on-and-off periods during the day when their effects either finally kick in or suddenly wear off, and over time they may require higher dosages or complete replacement.

Practicing medicine is as much an art as a science. Apart from the doctor’s observation and battery of tests, he or she must rely on how well you can describe your experience—something not always easy to do, even for a professional communicator, which most of us are not, especially under the time pressure most doctor appointments are under. I must be precise and to the point. Where do I begin? How do I accurately and concisely describe this weird, unusual, even embarrassing bodily sensation when I am uncertain what exactly I’m experiencing? Do I make sense? Does the doctor get it? Are we on the same page?

So it’s complicated. The possibility for miscommunication and that the doctor might administer misdirected or insufficient or even wrongful medication seems endless. On any given day, if I am asked how I’m doing, I can easily say, “I’m great, can’t be better” or, “I’m miserable, can’t be worse” or, “I’m hanging in there, hoping for the best,” and hope all three answers are true. I’m doing great and feeling miserable but still hanging in there and hoping for the best. It’s relative. It’s not only about physical symptoms. Living with a degenerative disease strains not only one’s body but one’s mind, heart and spirit. It’s a holistic question that involves mental, psychological, emotional and spiritual as well as physical dynamics.

What’s worse is that we live in a society that idolizes independence and self-sufficiency, a pick-yourself-up-by-your-own-bootstraps, can-do, quick-fix, immediate-results, do-or-die culture. Our society has little patience with, and even less financial tolerance for, lifetime degenerative diseases. Simply consider the way our nation handles the public health-care and health-insurance question. We keep it individualized and privatized, which is to say, Everyone is on his or her own; each person is to look out for himself or herself—apparently because so-called socialized medicine is evil. Yet health care, especially for lifetime degenerative diseases, takes money—and lots of it. In terms of health care, our society is geared for the healthy and wealthy.

So when faced with deteriorating health, we are prone to ask, What does it mean? And who cares? In truth, the average healthy person on the street may hear of so-and-so having such-and-such health issues and think, Poor guy; I hope he gets better, but will also be thinking, I’m glad it’s not me.

From whom or in what do we extract our worth, especially when our health is on the decline? What is the source of our personal value when confronted with developing incapacitation, growing neediness and helplessness, and increasing feelings of uselessness?

Here is what helps me get along:

I need to stay engaged and avoid self-isolation. It helps to keep my relationships going, not only by remaining connected but by honoring, appreciating and nurturing these relationships. For example, by including loved ones, family, friends and especially my faith community in my journey.

I need to stay open and share. It is freeing to admit I’m ill. It is even more liberating to accept my neediness. There should be no shame in it. I realize that for most men this is not easy. Nevertheless, it’s good for one’s soul to readily and graciously welcome the help and support and prayers your friends and loved ones and faith community offer you. They will be the first to uphold you in faith when you feel your own faith is wavering and can barely stand. Indeed, it’s the same spirit one needs to come to Christ, when gratefully receiving the gospel message of salvation.

I need to stay tuned-in to God. God speaks. I find that when I listen to God’s Word (using modern technology’s audio versions), I feel uplifted and encouraged. My faith is strengthened, my hope grows and my peace expands, for I am reassured of my salvation in Christ, the hope of redemption and my final destiny of healing and glory. God’s truth and love are my greatest comfort.

Hence, I need to keep my eyes on the prize. I am on a journey. This is not my end. I will not always be weak, tired and needy. My destiny is in Christ. Glory awaits me. In short, it’s the trajectory that counts.

A final note: If you’ve not been supportive of the Affordable Care Act (Obamacare), contemplate your future health-care needs. Someday, you will need others. Health care is communal, a social, collective act. It takes a community, a whole nation, to carry the burden of personal health care. All of us are affected by ill health sooner or later, and when it happens to you, you most certainly will not want to cope with it alone and will quickly find that it is impossible to pick yourself up by your own bootstraps.

Michael A. Meneses is pastor at Wellspring Church of Skippack, Pa.

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