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Guest Blog – Seeing Through the Woulds by Dan Digmann

Seeing through the woulds
By Dan Digmann
Birds are chirping. Breeze is blowing. Mourning doves are, uh, mourning.
And I’m that man sitting on the deck typing.
I’m writing what seemingly are assorted random thoughts, but that’s not fair to say. They’ve been brewing in my mind for months, I’ve just never had the time to spew them in silence. I suppose I now have this once-elusive silence, sans chirping birds, blowing breeze and doves mourning.
I really don’t have the time. I’m instead making the time while turning my blind eye on the two graduate courses I HAVE to complete this summer so I can graduate this December. But it’s barely the middle of June and they’re both independent study courses. So I’m sitting here on the deck typing as I claim my independence a few weeks before the Fourth of July.
This is what I had hoped for more than 15 years ago when I first was diagnosed with having Multiple Sclerosis (link to: http://www.healthline.com/health/multiple-sclerosis/facts-statistics-infographic). Fearing the unpredictable nature of the disease, I initially anticipated the worst when I went for a walk in the woulds: Would it rapidly progress? Would I still be married? Would I still have a job? Would I still be able-bodied? Would I be able to handle all the curve balls it threw at me?
Over a decade and a half later, here I am. I’m that man, typing on the deck.
Oh yeah. I’m also drinking a beer after a long day of work at the same place I was employed when I was diagnosed with MS in 2000. A workplace that has promoted me twice since then, despite my having MS.
I’m on the deck of the house I share with the love of my life, Jennifer. She truly is my rock in fighting this disease. It’s not only because she is my spouse who vowed to love and support me in health and in sickness.
She’s been there, done that with this whole MS thing. Jennifer has a more progressive form of MS (link to http://www.healthline.com/health-slideshow/types-of-multiple-sclerosis) and has lived with it for more than two years longer than the 15 years I’ve put into it.
But Jennifer’s nowhere near at this very moment.
She’s up at the local pizzeria with her girlfriends for her monthly book club meeting. They’re discussing their reading reviews there because The Cabin serves up some of the best pizza and cheese-filled breadsticks in our close-knit Central Michigan University community. The book club also chose to meet there because it’s handicapped accessible to accommodate Jennifer’s power wheelchair.
That’s the last thing they see when they see Jennifer. They see her, not her disease. And much of this has to do with how Jennifer carries herself. MS is part of her. She is not part of MS.
Looking at the two of us together, people often mistakenly think I’m the caregiver in our relationship. That’s only half true. For as much as I care for her, she cares equally as much for me.
Together we continue to help each other wander through the ever-changing woulds of MS. It’s like we serve as each other’s trail guide and companion as we venture into our dense MS forest.
In addition to braving the “what-if” woulds, we are in the thick of the “in-our-face” woulds; such as would you give me my shot? Would you help me put on my shoes? Would you skip this event because I don’t have the energy to go out tonight? Would you rub my feet? Would you get the Hoyer lift to help me off the floor?
Would we be able to manage our life together if we got any worse with our respective disease?
This is our daily question and our every day reality. But the true reality that we’ve discovered is you never know the true answer to these questions until you’re in the thick of the woulds and are required to respond.
That’s the beauty and the key to caregiving, whether it’s as a spouse. A sibling. A parent. A child. A friend.
We always are serving as the helping hand when the other falls, both literally and figuratively, into unforeseen dips and valleys. Blazing ahead and warning of the potential pitfalls we experienced when facing similar situations in our own journeys.
So I’m that man sitting on the deck typing as my wife is at the pizza joint with her book club. And I’ll go pick her up in about 20 minutes not just because her MS makes it so she no longer can drive.
It’s because I’m her caregiver, and I said I would.
 

The Caregiver's Prayer by Kelly Combs

The following Caregiver‘s Prayer appeared in a local church’s newsletter recently.  Lynn’s aunt shared it with me and I contacted Kelly, the author, to see if I could share it with you.  She graciously agreed. I have included her bio below as well as the introduction to the prayer and the prayer, itself. I hope it blesses you as it did me.
Kelly Combs wrote this poem for her father, who has been a dedicated caregiver to many, and is currently caring for his wife who has Alzheimer’s. Kelly writes a devotional blog at www.chattykelly.com.

The Caregiver’s Prayer

By: Kelly Combs

Being a caregiver is hard. Whether it is your aging parents, a sick spouse, or another chronically ill person, the weight can be overwhelming, even as it is done in love.  We can’t do it alone, but when we partner with God, His strength can sustain us. I hope this prayer blesses those of you at Fairmount who may be caregiving, or know someone who is a caregiver. Please feel free to share it.
Dear God,
I’m feeling overwhelmed. I don’t know what to do. I’m tired Lord, the work is hard, and so I come to You.
My role here isn’t easy, but it’s one I wouldn’t trade. I know I’m following Your will, but my strength’s begun to fade.
You said Your yoke is easy, and that Your burden’s light.
I need to rest my soul in You, and lean on You tonight.
I pray for peaceful, restful sleep; to wake fully restored.
I hope that’s not too much to ask of You, my precious Lord.
I pray that You renew my strength because in You I hope; Then I will soar, and not be faint, and You will help me cope.
You modeled loving-kindness, teaching us to be like You.
That gives me the strength to care. I know it’s what You’d do.
So I will keep care giving, on the bad days, and the good.
I’ll love the way You love me, treating others as I should.
Please bless the one for whom I care and hold us in Your hands. Together, with You, we will make a strong cord of 3 strands.
And when I get to heaven, and stand before Your Son,
He’ll call me faithful servant and say to me, “Well done.”
– Amen

Guest Blog

The following story is shared by one of my readers.  Though his wife did not have MS, his struggles as a caregiver are much like ours. 
My Struggle and Experience as My Wife’s Caregiver
by Cameron Von St. James
After my wife Heather was diagnosed with mesothelioma, I became her caregiver, and experienced all the struggles that go with it. Many times, my wife has tried to bring up the experience, stating she cannot imagine what I had to face, but I’ve only spoken to her about it once. Now I hope to share a bit more on my experience to help others who are facing similar difficult battles with disease.
Our only child Lily was born just three months before my wife’s diagnosis. She was a blessing, and we were so happy to welcome her into our lives. That happiness was cut short when the doctors diagnosed my wife with cancer. I was lost, unsure of how we could ever cope. I felt ready to breakdown and give up, just as the doctors began discussing medical options. That was the first day I remember feeling engulfed by the grief and stress of the situation, but it wouldn’t be the last.
Rage and fear were all I knew after the diagnosis, and I had no idea how to direct it, so I ended up taking it out on others, cursing and shouting. Perhaps it was the knowledge that I needed to remain strong for my family and the desire to not let Heather see my weakness, but I learned to control my anger so I could hide my fears from my wife and let her know she could rely on me.
Every day seemed like an impossible climb. I had to work my regular job, care for my wife, our daughter, our pets and our house. In the beginning, I was sure I would fail. I didn’t know how I would ever succeed, but eventually I learned to prioritize and accept the help that others offered us. Many of our family and friends helped us during this time. Without them, I am sure I would have drowned under the long list of tasks. Even with their help, each day was a battle.
One might think that a bit of time away from Heather and Lily would have been a nice break, but that was the worst time I can remember. Heather had to go to Boston to undergo a risky mesothelioma surgery. We sent Lily to South Dakota to stay with Heather’s parents and then Heather joined her after her surgery to recover and prepare for chemotherapy and radiation. Two months they were gone, and I was alone, as I had to remain behind to work and take care of the house. I managed to visit them only once.
After work one Friday, I drove through the night to reach them. Maybe it was my luck or maybe it was just life, but there was a snowstorm that night as well. I managed to get a few hours of sleep in the car while the plows did their best the clear the roads, but it didn’t help much. I was still exhausted when I arrived Saturday morning. I spent all of Saturday and some of Sunday with Heather and Lily before driving back home to return to work. I hated not being with them for those two months, but it was the right choice at the time. I couldn’t have given Heather and Lily the care that they both needed while working full time.
Everything that happened during this time was a challenge and a struggle but it all had to be done. The struggle taught me to accept help and take comfort in being able to make choices and decisions, even though they were difficult. Through everything, we persevered, and my Heather is still healthy after more than six years. I truly hope that my story can let those who read it and are struggling with cancer find hope.
 
Addendum: 
Heather and I participated in a short video about her cancer experience, and I thought it would make a great follow up to the article of mine that you posted a while back. We’re hoping to use this video to continue to spread hope and awareness to those who need it. If you wouldn’t mind sharing it with your readers, Heather and I would be so grateful. Here is the link to the video: Heather shares about mesothelioma (www.mesothelioma.com/heather)