June 10, 2017, by Kristin Neva
Driving home after dropping the kids off for their last day of school, I was struck by the natural beauty around me. Lilacs blooming. The sun shining on trees full of apple blossoms. So much beauty, I can barely absorb it. We’re in the glory days of UP living.
At the same time, there’s much pain woven into this season of the year for me.
My second Father’s Day without my dad will be here soon. I think of him often with reminders of him everywhere. The shelf he built for Isaac to keep his Legos on. The dollhouse he built for me and then renovated for Sara. The clothesline poles he made for my birthday, and the fruit trees we planted together. There will always be an ache in my heart, and yet I’m grateful to have had a dad who loved so well.
This is also the season when we pass the anniversary of Todd’s diagnosis — seven years on June 11. There’s that same mixture of joy and pain living with ALS.
Seven years with a progressive terminal illness has taken a toll.
I’m currently trying to get Medicare to approve an alternating air cushion because Todd has pressure sores from sitting in his wheelchair. He gets uncomfortable, not being able to shift his weight. He loses muscle month by month. His feet — his whole body even — swell with edema. He has itches he can’t scratch.
It’s maddening not being able to scratch an itch. Try it. Think about itching right now, and you’ll probably get one. As I type this my face has an itch, and I’m trying to see how long I can hold out before scratching it.
That’s it. I scratched. Itch gone. Relief.
Imagine not being able to do that. Todd has an amazing attitude, but this disease is a monster.
And it’s not just hard on Todd. It has taken a toll on me as well.
After not getting uninterrupted sleep for a year and a half because I was up and down all night turning Todd, last summer I was at my breaking point. With the chronic Lyme disease I picked up from a tick bite, as well as the stress I’m under, my anxiety went through the roof when I was on duty without a break. We needed night-time help. We were thankful for the support we received so we could build the caregiver’s addition off of Todd’s bedroom, and now we are hiring help so we can both sleep at night.
Medicare pays for zero respite care, and Todd did not have a long-term care insurance policy. So the cost of nighttime care is a huge burden, and I can’t leave him to work as then we’d also have to pay someone to take care of him during the day. The yearly cost is over $35,000 for us to get six hours of sleep each night.
Thankfully, we have one volunteer who gives a night of her time every week, and we have a couple ongoing respite care grants from ALS organizations. We pay for a great deal of the expense out of pocket, but we’re left with about $15,000 per year that we couldn’t possibly cover. I’m hoping my writing takes off so we can close the financial gap, but until then we depend on our friends to generously gift us money.
Sleep is so necessary for Todd’s and my health. When caregivers cancel, as we asked them to when they’re sick, it’s as if I have a PTSD attack. I simply need sleep after I went without it far too long.
And yet, we celebrate. Todd has outlived his prognosis by two years, and the decline in his breathing continues to be gradual. I’m thankful I get to still do life with my best friend. The kids have their dad to help them with homework and encourage them. Todd finds purposeful activities to fill his time—counseling friends, creating graphics for our church, preaching a few times a year, and — my favorite—helping me edit my Copper Island novels.
There’s creative energy flowing in our house, and it’s good. Many times, I stop what I’m doing to write down something funny Todd says — inspiration for scenes in a novel. Or we’ll have a minor disagreement and I’ll say, “Let’s keep arguing and see where this goes. It’s good dialogue.”
My second novel, Copper Country, will be out at the end of the month, possibly by the end of this week if the proof copy looks good. There are some funny scenes in it. I have learned how therapeutic laughing is — especially in the midst of difficult circumstances. I’m reminded of what Todd wrote in our memoir Heavy, “There is pain and suffering in this world, but there is also joy, and not just suffering here and joy there, but suffering and joy in the very same place.”
**In celebration of this seven year anniversary of Todd’s diagnosis, the Kindle version of Heavy will be 99 cents for the month of June. Share with folks you know facing ALS or other tough stuff. It resonates with people who are dealing with various kinds of suffering.**