100 things

There are 100 things (at minimum) I want to share with you from today.

Sixteen months you've been gone. I don't miss you any less, just more used to it now.

I love you, babe.

Room with a View

We spent several years living within boundaries set by ALS. Years that were filled with amazing experiences, but ones limited to what Tony could do. For instance, walking on the soft sand of a beach was impossible by about 18 months after his diagnosis.

During that time, I saw everyone else's vacation pictures and I'll admit I was jealous. I was jealous that they could have those seemingly carefree days, days that I felt I would never have again. Mainly though, I wanted to shake them all. I wanted to make sure they were really appreciating what they had... family time, functioning bodies, fun. Because I knew we'd never again have that as a family of four... and I didn't want anyone else to take it for granted.

We are on vacation now, and I've been posting a lot of pictures. I can't help but think back to those days.

Tony would have loved wave jumping with Cora, and watching Louise's wild style of putt-putt. Now I get to make those memories with them. And I don't take it for granted. I try my best to make the best of every day. I'm so thankful to have the chance.

The Late Great

I like to talk about you. I talk about you a lot. But I always wrestle with what seems like the inevitable outcome when I am talking to someone who doesn't know the story... when I have to say that you're gone. That's a conversation killer.

After that awkward silence, people often try to express their sympathy (and that is kind and thoughtful of them). But I'll admit that I can't bear to stand there and receive that kindness. I just hate it.

Last week, I think I discovered the solution, and it seems like another one of those subtle shifts that are part of this process. When I talk about you, I need to replace "my husband" with "my late husband." Maybe I should have realized it before, but maybe it was just too hard to say.

I said it for the first time today, and it seemed to work. It was out there, right up front, but the conversation continued. There was no room for the sympathy. No awkward silence. 

I'll try it again, and see what happens. In some ways it feels like a step away from you, but it makes it so much easier to talk about you. A step away perhaps, but a way to keep you in my life every day too.

I Need A Senator Stackhouse (or maybe just Murkowski)

In early May, ALS patients and families met with their Congressional representatives on Capital Hill as part of ALS Advocacy Day. One of the key events this year was the introduction of the ALS Disability Insurance Access Act; if it becomes law, it would eliminate the 5 month waiting period for Social Security Disability Insurance for ALS patients. 

In case you are fortunate enough to never have dealt with Social Security Disability (SSD), the government has created a check on Disability benefits by making people wait a certain amount of time after they apply before benefits kick in. For the average person, the wait is about two years. ALS patients are already fast tracked since they usually wait only five or six months. That’s a sign of the nature of ALS… it is so awful that even the US government gives you a short cut. And since the average life span of a patient after diagnosis is 1000 days, the difference between two years and five months huge. 

So… this bill would eliminate even that five month waiting period, and since there are only about 5,000 ALS patients diagnosed every year in the US, it will not apply to many people. Finally… I come to my point. When I saw that this legislation had been introduced, I immediately wrote to my Senators and Congressman urging them to support it. I detailed my own experience with the application process, and how it affected our family. Tony was one year into his diagnosis when he stopped work, and he was 34. At that point, I was still working. Our kids were one and four, and we were swamped with the bills of a young family, mortgage, day care payments, and were scraping the bottom of our account each month. We applied for SSD the day after he stopped working, and then the wait began. He had short term disability benefits through his work, so we were incredibly lucky to retain his income through that period. Many other ALS patients aren't that lucky, and it would be great if the waiting period could be eliminated.

Having done my civic duty, I went on about my business. Within a few days, I received a reply from Senator Mark Warner. It was brief, but reflected that he (or someone at least) had read my email.

Dear Mrs. Conway,

       Thank you for contacting me about the ALS Disability Insurance Access Act (S.2904). I appreciate the benefit of your views on this important issue. 

       As you know, on May 9, 2016, this legislation was introduced by Senator Sheldon Whitehouse and referred to the Senate Committee on Finance. I will certainly keep your thoughts in mind as we consider this legislation in committee, and if the full Senate considers this bill or similar proposals in the future. 

       Again, thank you for contacting me. For further information or to sign up for my newsletter please visit my website at http://www.warner.senate.gov.

Sincerely,
MARK R. WARNER
United States Senator

As far as I am concerned, this was great. I had been heard... happy constituent. 

Yesterday, I received a reply from my other Senator, Senator Tim Kaine. I always assume a staffer writes these things, and I understand that. But I do expect a certain standard out of the office of a US Senator, and Senator Kaine's office missed that standard by quite a bit. It doesn't even seem like they read it, because they responded about a totally different topic. AND they thought it would be helpful to explain ALS to me... like I really needed summary information about the disease that just killed my husband. 

Dear Mrs. Conway:

Thank you for contacting me about research programs for amyotrophic lateral sclerosis. I appreciate hearing from you.

Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease, is a progressively fatal neurological disorder that leads to gradual degeneration and death of motor neurons and ultimately, loss of muscle control. ALS is one of the most common neuromuscular diseases worldwide, and the National Institutes of Health (NIH) estimates that 5,000 people are diagnosed each year in the United States.

Although the causes of ALS are still unknown, there have been a number of advances from research programs in recent years. Adequate funding for research efforts is critical to ensure progress and further understanding of this disease. The National Institute of Neurological Disorders and Stroke, part of the NIH, provides the majority of federal support to biomedical research on ALS.

I am encouraged that the Senate Appropriations bill for the Departments of Health and Human Services includes an additional $307 million in funding for the NIH budget for research. I also joined my colleagues earlier this year in writing to the Senate Appropriations Committee, requesting a strong commitment to funding for NIH in fiscal year 2017. As Congress considers FY 2017 funding levels for NIH and ALS research, I will be sure to keep your views in mind.

Thank you again for contacting me.

Sincerely,

Tim Kaine

I'd like to drive up to D.C. track down Senator Kaine (and his staff), sit them in a chair and yell at them for several hours. With a reply like that, I strongly doubt my message got to him. He did not hear me... no wonder people complain about Congress. And no wonder the ALS community feels that no one is paying attention.