As Mother’s Day ap­proaches, I thought I would share with you the story of a very special woman in my life who con­tinues to show me how to live with myeloma – my mom.

My mom doesn’t have myeloma, but she has had a lifetime of dealing with crip­pling disease both personally and as a care­giver to my dad.

My mom has had a tough life. Born into a family of alcoholics, her child­hood was filled with neglect. She was con­stantly moving from one city to the next to escape last month’s rent, and many other terrors that no child should ever have to endure. While this dif­fi­cult up­bring­ing didn’t in­clude physical abuse, the lack of stability and poor behavior by her mother and multiple fathers left an indelible mark that con­tinues to influence her today.

She married my father at the tender age of 18 and had me a scant eight months later. By her own admission, the marriage was more of an escape from home than finding her true love. She was immature and un­pre­pared to be an adult, let alone raise a child. As was common in the early 1960’s, she was a stay-at-home wife with no education beyond high school. My parents were dirt poor and struggled to make ends meet. Dad was the sole breadwinner and the owner of a very small business.

Barely six years into their marriage, my father was diag­nosed with multiple sclerosis.

While his disease was not im­medi­ately life threatening or totally debilitating, the future for our family was a huge question mark. Multiple sclerosis (MS) at the time was not treatable; the cause was (and still is) un­known; and the outlook was eventually terminal.

Sound familiar?

My mother could have flipped out, become an alcoholic (she had the family history for a good excuse), or even abandoned my father. Instead, she chose to toughen up and become a pillar of strength for the family.

My father’s MS slowly progressed, and his ability to work became hampered. The stress of trying to keep a struggling small business afloat was killing him and putting a lot of strain on their marriage. So for the first time in her adult life, my mother went to work. First as a part-time, then full-time retail clerk, and finally as a prin­ci­pal in the family business.

All this time she was also raising me and my sister, volunteering at church and with the elderly, and going back to school to get a college degree.

As my dad became unable to con­tinue the business, it was time to make a change. They closed the busi­ness, sold their house, and moved all the way from Michigan to Arizona, where mom’s family had settled in Tucson.

Mom took over the role as breadwinner and care­giver to my now wheelchair-bound father. She took what­ever job she could get and worked her way up from receptionist to office man­ager of a large medical clinic – all starting at the “middle” age of almost 50 years. She eventually retired at age 71 when her debili­tat­ing rheumatoid arthritis finally made it impossible for her to work.

As dad’s health and abilities have slowly but inexorably waned, mom has had to pick up the slack. Not once or twice or even three times, but con­stantly for over 45 years! A full lifetime as a care­giver.

Throughout all of this, she has remained my father’s lover, friend, and soul mate. While their marriage started out on a tenuous footing, it has not weakened because of disease, but instead become con­stantly stronger.

One time while discussing my own marriage and the troubles of others, my mom told me some­thing that has always stuck with me. “Love is not a feeling, but a de­ci­sion.”

There have never been truer words spoken from the point of view of a care­giver.

Indeed, there is a lesson there for all of us, sick or healthy, old or young. We will all face chal­lenges in our rela­tion­ships. The initial bloom of lust and love will certainly go away. What we are left with is really not a feeling of love, but a de­ci­sion to love.

This de­ci­sion is what will carry us over the times when we aren’t sure it’s worth going on. The financial dif­fi­culties, the stress of disease, the very real chal­lenges of physical care of a loved one are all great reasons to throw in the towel. You have to make the conscious de­ci­sion to carry on.

I have found that this de­ci­sion not only kept my marriage going through the normal dif­fi­culties of life, but has rewarded me many times over after being diag­nosed with multiple myeloma. I am now the beneficiary of my wife’s de­ci­sion to love me even though I have this cursed disease.

As my mom so vividly con­tinues to show me through­out her life, we have to decide to love, we have to decide to overcome our physical chal­lenges. We have to choose to make the best of what we are given each day. Even on the days that are pretty crappy.

Today my mom con­tinues to care for my father in Arizona. While retired and no longer grappling with work issues outside their home, she is now struggling to overcome the chal­lenges of full-time care­giv­ing for my father and her own battle with severe arthritis.

As all of you care­givers already know, this is a huge job. She is continuing to adapt and be strong how­ever.

Her courage is inspiring. Her de­ci­sion to love is inspiring.

I am so much more prepared to deal with my own health issues because of her example. Thank you, mom, for teaching me how to live with myeloma!

Aloha and carpe diem.