Living Well With a Chronic Illness

By Allen Nohre, TERROS Behavioral Health

On a balmy April Arizona evening, my wife Kathie and I were enjoying ourselves with visiting Minnesota friends when the phone rang. This time it wasn’t a telemarketer. For five years my doctor had been monitoring my MGUS –“monoclonal gammopathy of undetermined significance” — the craziest medical term ever invented for a disease. I had been living in a state of limbo wondering when my MGUS would develop to multiple myeloma, a rare, incurable cancer of the blood. The message I heard on the phone said, in effect, “We have significance. We need to start treatment.”

As a writer at TERROS, I interview people recovering from drug and alcohol addictions, and see how it can be a difficult and painful process. These amazing people give me the privilege of writing their stories and it occurs to me they also struggle with life and death issues. I see we are different and the same. They don’t have a cancer, and I don’t have an addiction, but we fight for our lives, and I see what we have in common.

We  have  a health  condition  that is chronic.

Our condition is a matter of life and death.

Our condition can be treated and managed.

Better than the Alternative

A chronic health condition persists over a long period and affects every corner of our life: our bodies, emotions, the way we think, jobs, families, and our faith and spirituality. It is good news that a serious condition like addiction and some cancers can be treated and managed over a period of time. A chronic and treatable health condition is certainly better than one that is imminently fatal. However, untreated chronic conditions usually become fatal. Responding to addiction as a chronic condition gives the hope of recovery.

 I was given a long-lasting shot of optimism and good news about my future when my doctor said he’s confident, that with treatment, my multiple myeloma can be managed as a chronic illness. He said, “I am looking forward to treating you until you are your mother’s age.”

At the time, Mom was 101. I said, “I’d be happy with 20 years, that takes me to age 94, and that’s enough.”

 Managing a Chronic Condition

Cancer, hypertension and diabetes are chronic conditions as is addiction to drugs or alcohol. I use scientific medicine for treating my cancer and a person with addiction should get evidenced-based treatment. Brief addiction treatment may result in sobriety, but that’s not all it takes to develop psychological and spiritual health. It takes the work of long-term recovery. The same is true of cancer. I need to do more than get treatment that is aimed at my bad cells. I need to be as healthy as I can be by taking care of myself; I call this self management.

Self management is attending to the components of our lives and doing all we can to be healthy in every dimension — body, mind, spirit and soul. There are some things I can manage and there are other things out of my control. My will power does not have the ability to kill off the bad cells that live in my body. That is beyond my ability. I need outside help. I need the help of scientific physicians to keep those cells at a manageable level. My job is to do all of the basic things I learned over my life time to maintain good health.

 The Journey of Recovery

I repeatedly call addictions, as well as cancer, “chronic health conditions” because that is what they are. You may also have rightly surmised that I am avoiding the word “disease” because I don’t want to go down the controversial path of debating whether excessive use of alcohol and drugs is a disease. Others can have that debate. I know that addiction to drugs and alcohol, like cancer, is a serious health condition that needs treatment and on-going recovery.

The people in recovery whom I interview are doing what I am doing: getting outside help and taking responsibility for recovery. All have gone to treatment and most use recovery groups to help them sustain sobriety and improve their lives. They tell me they are learning that being clean and sober is not enough; that thing called addiction is still with them. Sobriety is the first step; personal growth is the next step - a fulfilling life-long journey of recovery.

It seems to me what people in recovery do is similar, but not identical, to my use of physician specialists to deal with what I can’t control. The people in my recovery stories are taking control of their lives, but the chronic condition is still there.

 Three Parts to Recovery Stories

When people describe their recovery journey, their story descriptions fall naturally into stages. The first part of the story is a description of their experience of the stranglehold of drugs or alcohol, the extent to which they have hurt themselves and those they love, and how close they have come to death. I sometimes shudder with fear hearing how destructive some had been with their lives and how deeply into despair they had fallen.

The second part usually describes a crisis that is the start of a turnaround. The crisis might be a DUI, the loss of a job, arrest and jail, or Child Protective Services rescuing a child. Sometimes it’s an accumulation of many disasters that causes them to say “enough” and seek help.

The third chapter of the story is about redemption, how they are assuming authority, taking charge and taking part in those recovery activities that bring about transformation. There might be three parts to the story, but no story has been typical; each journey has been unique. I always leave the interview with respect for the courage and determination shown to reclaim lives and purpose.

 Yvette

Yvette is one of those people who inspire me. She has a bright engaging smile, a quick laugh, bright eyes that beam intelligence, and I just can’t imagine her drunk.

As we spoke, I didn’t need to write Yvette’s story. She wrote it for me.

“I drank when I was happy or sad. I drank when there was a party and when there wasn’t. I drank in the morning and at night, not to mention in-between. “

“I drank and drank and then one day I could not stop. Frightened does not come close to describing how I felt. Would I drown in this bottle, would I lose me? I called the Crisis Hot Line and a team of wonderful people came together to help me. ME! I was recoverable. It took a team to help me climb out of the bottle into a real life.

“I now work, and in my work I find fulfillment. It’s good to be busy and to come home tired. I’m eager to add more days, months and years to my eleven months of sobriety.”

Yvette received outpatient treatment at CHOICES Network Midtown Clinic for several months and continues to strengthen her recovery with weekly participation in recovery groups.

 Attitudes and Actions

Recently I was asked by a colleague at TERROS, “How are you managing so well, given you have a serious cancer?” I had a difficult time coming up with a quick answer to the question. It prompted me to do some thinking, and then I came up with a list of things helping me manage my chronic health condition. Some of them may also translate to the management of addiction.

Embracing the goal of managing my cancer as a chronic condition rather than expecting a miraculous cure.

Monitoring my condition and getting treatment as needed, trusting the competence of my physicians.

Taking care of my body with exercise, sleep, and a healthy normal diet.

Stimulating my mind by continuing to learn and develop new skills.

Fostering my spirit with awareness of the sacred in my life every day.

Nourishing my soul with relationships that significantly connect me.

The Long Road with Companions

Millions of people with chronic illnesses are traveling a road that will hopefully be a long road. Our journey is the opportunity to use our time to make changes, live better, and be happier. The word chronic comes from the Greek language and means, “time marked by a long duration.” Every day I’m thankful that my health challenge is chronic and not acute. Our chronic conditions give us the gift of time — time to do positive things for ourselves and others.

The gift of time comes as a package to be unwrapped “a day at a time.” Our journey is not lonely; we travel with professional and peer companions. I don’t regard what I’m doing as heroic. I’m not at war with my cancer, I’m at peace, living as positively, fully, and pleasurably as I know how. My life has never been better. People in recovery with addiction tell me that their lives, although not easy, haven’t been this good for a long time, and they also continue to get better a day at a time.  

TERROS provides a wide variety of outpatient drug, alcohol and mental health services. For assistance call 602-685-6000 ext. 1950 or visit  www.terros.org