Did I really say that? Really?
I suppose some readers might not appreciate my gallows humor. But how am I supposed to know unless I blurt out something like, “This red velvet cake is to die for. Gimme two big pieces so I can speed up my ALS progression and get this dying stuff over and done with already.”
And I really do understand that someone who recently lost a loved one to ALS would think it’s inappropriate for me talk about the 2013 ALS “Walk-a-thong.” I mean no disrespect, but being funny has been one of my healthier coping skills — way better than my previous drinking or starving myself to death methods.
I have ALS, so I get to make jokes about myself, so there. Of course, the official name of the event does not refer to panties or footwear; it is The Walk to Defeat ALS and it’s on Saturday, Oct. 5, at Raley Field in West Sacramento. The Walk is free for anyone, so please join our team, The Specktaculars. We’ve been fundraising for months leading up to this big day, because all of the brilliant ALS researchers in the world can’t do a thing to find a cure without enough funding.
It’s not too late to donate, so you can make a donation at the Walk. The event begins at 9 a.m. for registration and entertainment, until 11 a.m. when the Walk begins. Walkers can choose one of two routes: the one mile loop is three times inside the River Cats ball field, and the fives mile walk loops around to the State Capitol and back. Walkers who can’t actually walk are welcome to use wheelchairs, walkers, adaptive trikes, but no skateboards or 1985 roller blades.
Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, is a fatal progressive neurological disease that affects the motor neurons in a person’s brain and spinal cord. When the motor neurons die, the muscles waste away. Gradually, a person is robbed of the ability to walk, speak, eat and eventually breathe. For most patients, the mind remains sharp and aware of the total paralysis that is quickly setting in. In some cases cognitive impairment can complicate quality of life for the care-giving loved ones too. Upon diagnosis, doctors give ALS patients only two to five years to live. There is no known cause. There is no cure.
I walk on.
It was 1971, in Davis, when my mom and dad asked us kids to sit down at the dinner table for a serious discussion. My parents had nine children, with four of us still living at home. We were a happy, active, warm family, and my mom had always been robust and lively, and immune to even a cold or flu. Or so it seemed.
For about a year she kept going to the doctor with mysterious symptoms. Nothing seemed too horrible, doctors said. Probably bursitis, or “tennis elbow” or “hitch hiker’s thumb.”
But that evening, when we all sat down and passed around a light blue brochure, we learned that Mom had Lou Gehrig’s disease (amyotrophic lateral sclerosis). We were told that she had a terminal disease and that she might live two to five years. She was only 50.
We walked on.
We also found out that my mom’s aunt, Mary, died of ALS at the age of 54, and that the disease wasn’t hereditary but could run in families. I refused to believe that anything could kill my mom.
I walked on.
She died Dec. 19, 1972. I was 13. My family and the community were devastated. And our lives were changed forever.
We walked on.
On May 6, 2008, my second-oldest brother, Larry, was diagnosed with ALS. He died on June 22 the same year. He, too, had been misdiagnosed for quite awhile. Larry was willing to help researchers with familial ALS studies. Other siblings and cousins also sent in their blood.
We walked on.
I felt like I’d been “studying” ALS since I was a teenager, and I wanted more than anything to help find a cause and cure. I sent my blood to Northwestern University in Chicago. I told them I would do anything to help. I also contacted the Sacramento ALS chapter to see if I could help in any way.
I walked on.
Meanwhile, I was symptomatic, and went to my doctor and three neurologists for this test, that test, everywhere a test test… Then the news came from the researchers at Northwestern University that my brother had a very rare ALS SOD1 mutation, and that I have the same one.
I walked on.
Larry, my sister, Susan, and I had this “gut feeling” for decades that each of us would get ALS. Susan died in her sleep at age 40 in 1997 but had not been diagnosed with ALS yet.
I walked on.
I’m not positive what my oldest brother Paul had been thinking before he was diagnosed in September 2009. That year was the Speck family’s first ALS Walk (see photo) and it was the last Walk Paul did in California. He and his family live in Bend, Oregon and they participated in an Oregon Walk to Defeat ALS with the team name of “The Specktators.” The team captain up there is Katie Speck, who is married to my nephew Joe. They had twin boys not long before Paul died. They know that Joe has a 50 per cent chance of having the genetic mutation. And if he does, the two boys will face the same fate.
They walk on.
This kind of pain and fear is nearly unbearable for parents. And there is still no cure. I don’t know how my 91-year-old dad, Gene Speck, keeps going.
We both use walkers and we do walk on — slowly.
After my brother Paul’s funeral in May 2011, my great niece, 6-year-old Libby, looked up at me, directly in my eyes, and said in her high soft voice, “Aunt Cathy, why do you wear those things up there in your nose?” referring to the nasal cannula which supply oxygen for me when I’m feeling weak and short of breath. I explained that it helped me breathe and it made me feel better.
She then looped her little kid fingers into my weakening right hand and bravely asked (I could tell she was trying not to look scared) “Oh, so you won’t die like Uncle Paul, right? You won’t die, right?”
She looked into my eyes as if she wished she hadn’t asked that question. I couldn’t lie, and I couldn’t break her heart. I put my arm around her and softly answered, “No, not yet.” Her head drooped down like a tired sunflower, and her shoulders slumped. “Libby, I love you very,very much. And I’m trying very hard so I can be with you. I’m doing everything I can.” Our hug goodbye felt as if it lasted all of her six years.
She walked on.
So here I am two years later, with my neck brace and walker decorated with wacky flair, fun toys and a clown horn, laughing loudly and smiling as broadly as ever. The progression in my family runs a bit differently, so the experts told me to look at what my relatives experienced to get some sort of idea of what to expect. What I learned was to make different choices than they did. I choose to use oxygen and breathing assistance at night, and I sleep in a hospital bed at a 45 degree angle. They all died of respiratory failure, which almost happened to me in 2011 when I ended up in the Sutter Davis ER with pneumonia. I have lived twice as long as I expected I would.
Whew! I walk on.
Perhaps some of you reading this story have or had loved ones suffering with ALS. Sometimes getting involved can help a grieving soul. Go to an ALS benefit or awareness event or read about it online at www.als.net and www.alsa.org If you truly want to feel the positive energy of people with ALS and their caregivers, come on over to Raley Field for the Walk to Defeat ALS this Saturday, Oct. 5. We chant, we cheer, we face ALS without fear. Well, maybe that sentence was just for the rhyme — we do have fear, but we live with it anyway. Well, we live until we’re not living anymore.
Oops, my gallows humor slipped in again. Good thing because I got way too serious and now I need to laugh. Maybe I’ll watch “Portlandia” or “Strangers with Candy” a comedy TV series starring Amy Sedaris and Stephen Colbert. Amy is the sister of funny man writer David Sedaris, and they both crack me up.
Did I play the cards well enough to convince you to join us? Awesome! I’ll see you at the ALS Walk-a-Thong — look for whole bunch of bright yellow smiley helium balloons. The Specktaculars’ spirit is sky high. Love powers the journey, and smiles light the way. Humor makes it fun.
We will walk on.
More details about the ALS Thong Hop are available online. The link to my personal page is : http://web.alsa.org/goto/speckles
The team page is: http://web.alsa.org/goto/gospeck
Or send me an inappropriate email firstname.lastname@example.org
To donate by check or money order, please make checks payable to “ALSSAC” and write “Specktaculars” in the memo line. Mail donations to: ALS Association, Greater Sacramento Chapter, Attn: Walk to Defeat ALS, 2717 Cottage Way, Suite 17, Sacramento, CA, 95825