The Surprising Reason I Need to See You Dump Ice Water on Your Head

For me, the Ice Bucket Challenge is not just a way to raise money for ALS research. It’s not just about hope. The effect on me goes much deeper when I watch the videos. I know I have a vast support system that includes you, my dear readers. However, I can’t see you read my blog and articles. I get statistics on how many people read my words, and occasionally there are kind comments, but there’s a certain distance between us.

When I watch your Ice Bucket Challenge videos and you say my name, I feel seen. I feel less alone. The gift you give me when you make and post those videos is long-lasting and powerful. You kindle my heart, and I hold that light in my chest until next year when it’s time to repeat the challenge.

This year, I have only seen one video, and that weighs heavily on me. I feel forgotten, like the challenge was just a short-lived trend, not the promise of support and camaraderie that I originally believed it to be. I am holding on to hope that the last few days of August will surprise me, though.

Won’t you let your heart kindle mine?

If you need a reminder of how the Ice Bucket Challenge, follow the instructions below. Don’t forget to challenge three people in your video and tag them when you share the video on Facebook. If you are able to make a donation, you can do it at alsa.org.

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Are you wondering what the donations have accomplished so far? Check it out!

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Feeding Tube Foodie; or How I’m Being Lured to the Dark Side

The sound of the microwave whirring to life sliced through my interest in the book I was reading in the living room. I made a beeline for the kitchen where my husband Evan was clearly up to something delicious. (it was a good day for me in terms of hand strength, so I was able to steer Ruby, my beloved power wheelchair, myself) Just as I suspected, Evan was warming up some leftover pizza.

“Hey, hun. Is that your dinner?” I asked. I knew I had to play it cool to keep Evan from becoming suspicious.

“That’s the plan,” he replied, settling in at the kitchen table.

“I think I’ll just hang out here while you eat,” I said, rolling up to the table. “Hey, as long as I’m here, can I watch you eat?” I grimaced. Real smooth, Rachel.

“Um, I guess.”

“Cool, cool, cool.” Yes, keeping it casual. This time, I would control myself. I would NOT make it weird.

Evan took a bite, then another. I was riveted.

“You’re really starting at me.” He shifted in his chair.

I made a conscious effort to blink before saying, “You know, I was just wondering if you can try chewing slowly.”

With obvious discomfort, Evan complied with my request. One bite later, he stopped. “You’re leering at me. It’s freaking me out. I am going to eat in the living room.”

I huffed in frustration when he walked away. I miss food desperately, and I am always looking for ways to hold onto at least the memory of the joy of eating.

At my most recent clinic, my speech therapist put me on a pureed foods diet after she discovered that I can no longer move my tongue from side to side. Losing that motion makes me unable to sculpt my food and move it between my teeth. As a result, I have little control over where the food in my mouth goes. I am at risk of choking if I deviate from the pureed foods diet because anything I eat can slide to the back of my throat and block my airway. Even crumbs are a danger. Then there is the possibility that tiny particles of food may slip into my lungs without me even knowing it. This puts me at risk for pneumonia, which can be fatal to someone with ALS.

To protect my lungs and prevent choking, I get most of my food all of my hydration through my feeding tube (I can’t drink water because it moves so quickly that aspiration is inevitable). I eat orally at dinner, usually a pureed soup my mother-in-law Brenda made for me that morning – she concocts everything from broccoli and feta soup to savory butternut squash puree – or a fruit smoothie. I get a decent variety of flavors, but the lack of texture is starting to get to me, I fantasize about chewing on a piece of cheese or sinking my teeth into crisp slices of tomato, bell pepper, zucchini, and apple. Lately, I am nursing an obsession with all things toasted, specifically paninis. The longing keeps me up at night, and I suspect it’s chipping away at my sanity, which led to this, ahem, eccentric text exchange with a friend. Read on to witness the burgeoning madness of a Foodie on a feeding tube…

Me – I would do unspeakable things for a panini.

Melissa – Has anyone ever invented something like a chew toy for humans?

Me – Someone really should. I want to bite something and feel it crunch.

Melissa – I feel like I could put a panini in some mouth safe baggy and hold it in your mouth to feel on.

Melissa – Or I could just put a panini in your mouth and then take it back out, over and over, with purée in between so you get full.

Melissa – These might be very foolish, even offensive ideas. I just would love to please your mouth. I feel so strongly for food and I can just imagine the panini longing.

Me – no, I love it! I would drool all over a panini bag.

Me – I am desperate and the more desperate I get, the more violent I am willing to be to get what I want.

Me – I am like bargaining with some powerful dark force. ” if you let me eat a panini, I will burn down Chicago.”  **

Melissa – I can’t say I know what you’re going through, but i know it can’t be easy! When I’ve had to not eat solid food for just some period of time, i went mad.

Me – I always saw myself as a force for good, but it has taken so little to push me over the edge. Am I truly a slytherin when all my life I thought I was a hufflepuff?

Melissa – Serious hunger can push any human to the brink.

Me – Exactly. My teeth are depressed. They have lost their purpose and they are not taking it well. I think I feel at least two spite cavities forming.

Me – Can I put this conversation on my blog? I think it is a wonderful representation of my life as a feeding tube foodie

Melissa – I’d be honored.

 

 

 

On the Delivery of my CDC National ALS Conference Speech

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This morning, my mom and dad attended the CDC National ALS Conference to deliver a speech I wrote. I had hoped to attend the conference myself and have my husband speak for me since my voice is almost completely lost. However, my ALS threw a few wrenches, a hammer, and a screwdriver in that plan. At first, the trip seemed so manageable. However, as I learn more about the process of transporting the breathing machines and my wheelchair, and the damage that could be done to them, I have become uncomfortable with the idea of travel. It just seems a bit too risky to me. If my wheelchair is disassembled, I would be up a creek without a paddle. And there would be piranhas in the creek. And a hole in the boat. Plus, my intense spasms could make for a rough and painful flight. This is the nature of my beast.

Watching my mom give the speech, I felt no bitterness or envy. Her practice with my dad showed in her fluency. She delivered my words perfectly all of the jokes landed, and she addressed the room with conversational warmth that engaged the audience and fit my message. I was thrilled, smiling like a lunatic as I watched her do what I couldn’t in exactly the way I hoped. My dad handed out my business cards at the break while my mom texted that everyone raved about my speech and promised to email me. I have already heard from the VP of Public Policy at the ALS Association! The gratitude I feel for my parents is bigger than words.

I hope to get a recording of the speech soon to share with you. Stay tuned!

The Power of the Bucket List

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The approval of Radicava, the first medicine for ALS in 22 years, had me reconsidering my post that labels my belief that I will survive this disease “wild.” Then, the vessel of  my most precious dream was wrecked on jagged rocks I never saw coming.

The federal budget for 2018 calls for the complete defunding of the National ALS Registry, and the shock of learning that my own government would so callously undercut one of the most important parts of the search for a cure left me – and I imagine many others – frightened and enraged. The budget also cut funding to Medicaid and SSDI (social security disability insurance), a fact that barely sunk in. I just didn’t know how to process the realization that the registry was in danger, and Medicaid was as well. Medicaid covers machines, medication, feeding tube supplies, caregiver fees, and so much more that we could never be able to afford on our own. On top of that, if we lost the $600 per month we receive through SSDI, how would we afford the expenses Medicaid doesn’t cover, like my daily injections of B12?

I chose to focus on saving the National ALS Registry155 a campaign I am continuing to expand. Narrowing my focus and taking action gave me a chance to salvage some of my former optimism.

Then came the second hit: a health care bill drafted in the dark that slashed Medicaid so deeply that 14 million of the most expensive beneficiaries – including the ALS community – would lose coverage and very likely their lives. My joy over Radicava seemed distant, even foolish. What good is this new treatment if we can’t afford it because our insurance has been gutted or taken away? Obstacles were coming from all sides. Rising tides of depression and fear threatened to drown me. They still do.

I had to find a path back to joy and hope in the midst of the battles I had been forced to join. Enter my inspiring friend Glynis, who made a bucket list with her husband Vince after he was diagnosed with ALS. The list helped them focus on enjoying the present, no matter how hard it got, and gave them things to look forward to. I decided to follow her example, and I came up with a list that includes both things I can accomplish despite my disease and other dreams I look forward to achieving after I am cured. Now, I have something new to think about as I try to fall asleep and worry creeps in. Have a peek at the list. What would you add to your own?

Save Medicaid from Being Slashed!

The health care bill draft currently being reviewed by the Senate slashes Medicaid to the bone. If the bill is passed, 14 million of the most expensive beneficiaries – particularly, the elderly and disabled, including those suffering from ALS – will be kicked off Medicaid! Use the following text to write to or call your representatives and let them know that you expect them to oppose this health care bill (contact information here138). We must act quickly since senator Mitch McConnell intends to have the Senate vote by JUNE 30th!

The Honorable [NAME]
United States House of Representatives (or: United States Senate)
United States Capitol
Washington, DC

Dear Representative (or: Senator) [NAME]:

I am writing to ask for your help to ensure that people with Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s Disease have the coverage and health care they need and deserve. If passed, the Better Care Reconciliation Act will seriously impact the lives of people suffering from ALS and their families. In fact, it may even be a death sentence since many will be kicked off Medicaid.

The cost of living with ALS is staggering. Depending on the level of care a person needs, expenses can reach $250,000 per year. If patients are left with the burden of paying all the costs that Medicaid currently covers, these people will go without the feeding tube surgery and supplies that prevent them from starving to death. They will lack the medicine that relieves their tremendous pain. They will not be able to afford the caregivers who help them with toileting, medication, tube feedings, bathing, and monitoring vital machines such as ventilators. Most cruel of all, thousands will face the decision to go on a ventilator, or forgo the life-saving procedure in order to avoid bankrupting their families. In short, thousands of Americans with ALS will lose their dignity and their lives an agonizing death if they are deprived of Medicaid. (Optional: insert personal story of the impact of ALS on your life).

This is a matter of life and death, not politics. This health care bill is inhumane. I know there are a number of initiatives and programs under review. However, I think, and I hope you do as well, that Medicaid, which saves the lives of countless citizens, must be preserved and well-funded.

As a resident of (STATE), I hope that I can count on your support and look forward to watching closely as the health care bill moves through the legislative process.

(Optional) If you need more information on the impact of ALS on the people in our state, please don’t hesitate to contact the ALS Association of (STATE ORGANIZATION) at: (insert chapter website).

Sincerely,

Your Name