I am VERY lucky.  My Dad taught me how to live with multiple myeloma.

Aloha, my name is Tom Shell, and I am a 51-year-old man from Hawaii who has been living with multiple myeloma for two years now.  While living in Hawaii doesn’t help with the medical aspects of myeloma, it certainly doesn’t hurt my mental outlook!

I am a new columnist at The Beacon and will tell you more about myself in future columns.  For now, given that it’s Father’s Day in a lot of coun­tries around the world, let me tell you what my Dad taught me.

He didn’t have the disease before me.  He didn’t give me step-by-step lessons on how to deal with a bone marrow biopsy or the joy that is dex­a­methasone ^[1] (Decadron).  He didn’t even tell me how to tell my children their Dad has a serious illness.

Instead, he constantly gives me an example of how to do the best I can with what I’ve got today.

You see, while my Dad doesn’t have multiple myeloma, he does have multiple sclerosis, or MS.  He was diagnosed with his life-altering disease about 1967 when he was only 27 years old.  He has lived with his terminal disease for a mind blowing 47 years now.  His story is very relevant to those of us who hope to live with multiple myeloma for many years.

Dad was a very active outdoorsman; he had a new family, a struggling family bus­i­ness, a new mortgage, and all the aspirations of a smart 27-year old man back in the 1960s.  He worked 70 hours a week, fished another 20 hours a week, hunted, and fixed the old house we lived in the rest of the time.  He was a star athlete in high school and strong enough to carry the world on his shoulders.

His MS hit hard and slow.  He didn’t immediately become disabled. Instead, he had to endure a constant deterioration in his physical condition and abilities (sound familiar?).  First his vision went double for a while.  Then his balance started to deteriorate along with his ability to run.  Eventually his ability to even walk became a struggle.  Each setback came suddenly and never went completely away.

For a man who owned a large fishing and hunting retail store and who would rather hike into a remote trout stream in Northern Michigan than almost anything else, his condition was getting real hard to take.  His inability to walk normally had a negative impact on his bus­i­ness.  The loss of bus­i­ness was really hurting us financially.  Every day it seemed he woke up with less capability than the day before.   Dad was hurting.

So what did he do?

He did the best he could with what he had that day.

It was and continues to be really that simple.  My Dad wakes up every day and does the best he can with what he has that day.  When hiking to those streams became impossible, he fished from his boat.  When getting into a small boat became too hard, he fished from the shore.  When walking through a field to go rabbit hunting got too difficult, he quit hunting and spent more time volunteering at his church.  When he could no longer work at all, Mom went to work and picked up the slack.

Eventually the ice and snow of Michigan became too difficult to manage, so he and Mom closed the bus­i­ness and moved to her native Arizona.  It was no small feat to move to the desert for a man whose whole life revolved around fishing the Great Lakes of Michigan.  He adapted to his new surroundings by fishing in the small puddles and lakes around Tucson for fish that were so small he previously wouldn’t have used them for bait.

This ability to adapt and make the best of life is essential for those of us who want to make the most of every day we live with multiple myeloma.  We have lost and will continue to lose some of our previous abilities – both physical and mental – until we die.  We can’t change this any more than my Dad can.  I have to con­tin­u­ous­ly motivate myself to push myself as far as I can (sometimes too far) so that I can get the most out of my day.  This often involves accepting some physical discomfort and pain.  Sometimes I can’t keep up with everybody the way I used to, but this too I have to accept as it’s better to me than quitting all together.  Some activities I have had to give up all together but I found new ones to occupy myself.

Today Dad is still doing the best he can.  His ability to even hold a fishing rod anymore is gone.  He strug­gles to get himself out of bed and into his wheelchair. Some days he can’t even manage this.

However, instead of focusing on his physical achievements, he focuses his energy now on helping others he considers in worse shape than himself.  Every day he calls many shut-in seniors and some juniors who just need a loving voice on the other end of the phone.  This is what he can do with what he’s got today.  This makes him just as happy as reeling in a 10-pound steelhead trout from the frozen shores of Lake Huron.  Being truly happy is really all we can ask of this life.

Those of us with any life-altering disease should emulate my Dad.  I’m super proud of you, Dad.

Thanks for showing me how to live with multiple myeloma.

Aloha and carpe diem!