I’ve recently spoken to a few people with ALS who all said “I’m dying” at some point during our conversation. I understood. They are recently diagnosed, trying to make sense of a sudden, terrible loss of control over their lives, their futures. To say “I’m dying” can be a way to acknowledge what is happening, while still taking back some of the power. “Now I know what’s going to kill me,” one man said.
Or it could just be a way to begin to cope with what we’ve all been told is the inevitable conclusion of having this disease.
But I’ve found it doesn’t work for me. I once tried looking in the mirror and saying “I’m dying” out loud to my reflection. It just made me want to laugh. I don’t feel like I’m dying. Even though any one of us could look into a mirror and say those words, and they would technically be true, when I said them, they sounded false.
If I die of ALS in 2 years, or 6 years, or 10 years, does that mean I’m dying now? Do you, healthy people of the world, get up and announce that you are dying? Probably not, even though you might wake up tomorrow and get hit by a car, or be bitten by a poisonous spider, or maybe you’ll contract a deadly case of dysentery. (I sincerely hope that none of this happens. Also, that last one would probably only be an issue if you were playing The Oregon Trail, but it’s still best to wash your hands regularly.)
These words we use, they matter. Is my disease terminal? What if it’s the dysentery that gets me? More optimistically, what if all of the current attention on ALS results in treatments that take me off death row? Will I then be told, “Well, you were terminally ill, but the good news is, now you’re not. The bad news? You’re still gonna die.”
It’s certainly accurate to say that I’m disabled, a word that I have a rather fuzzy relationship with. Sometimes I don’t mind it, or its close cousin “handicapped.” Sometimes I don’t care enough to mind. Other times, the words are like waking up and discovering you speak another language fluently. They sound wrong, as though they are clearly meant for someone else.
I remember being asked in a college class how I identified myself. There were a host of words I could have used: Woman, White, Italian, Brunette, Daughter, Sister, Student. And later: Wife, Mother, Runner, Writer. At the time, I thought Woman first. Then for a while after college, I used my job as a primary identifier. Now I think it’s Mom that comes first, if something must.
But ALS defines me, too. In fact, it differentiates me in a way that most of those other words don’t. I can’t run from it, which isn’t saying much, since I can’t actually run from anything. Stupid jokes aside, it is a part of me.
I can’t run, can’t walk. I’m disabled. There’s no getting around that word, either. But none of these: ALS patient, Disabled, Dying are very far up on the list of words I use to describe myself. There’s more to me than my disease, just like there’s more to my disease than just the dying part.
When we talk about life, I think we are talking about something that (we hope) is long and lasting. When we talk about death, we are usually referring to a moment or series of moments leading to the actual end of life.
So if I don’t say that I’m dying, it’s not because I’m in denial. It’s because, today, I’m not planning to die.
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Yes, and . . . (I learned that from my daughter’s improv class). I understand completely what you are saying. I do think that the likely nearness of our deaths and the relative clarity of the manner give us a perspective that we are trying to capture when we say “I am dying”. I am dying in a way that most people are not dying. My body is making a bit of a spectacle of dying; just a little bit more every day. My limp in not caused by a sprain that will heal. Every setback is permanent.
I am happy. But I am dying on a timeline that is out of synch with the world around me. It changes my behavior and my reactions to things. I used to see Fiat 500s on the road and know that I would have one someday (if my stupid 14 year-old car would just give up already!). Now I see them and my heart sinks a little because my 14 year-old car will probably outlast me.
Perhaps we need another word. I am alive. I am living. I am also dying. I am in a space in between. It’s not a terrible space, once the shock wears off. Everything is shinier. Relationships are more precious. Traffic doesn’t matter. But it’s a different space and it feels like it deserves a different word.
Well, said Sarah, as usual! So if I am giving you a title this very moment it is “Writer” ! I am always captivated and pulled in by your writing!
The reality is as you said none of us knows exactly when we will die, so we should live for today with what knowledge we have. I may have added some of my own thoughts in there.
Anyway, keep on keeping on Sweet Sarah! xoxoxoxoxoxoxoxoxoxoxoxoxo
I have some more words for you Sarah, “beautiful, brilliant, friend.” Each time I read your writing you enlighten me and remind me to live each day to it’s fullest. Every day can’t be a wild adventure but we can make our mark each day even in the little ways that count to ourselves and the people we love.
i was diagnosed unofficially in 2012, officially in March 2013. My first thought was “I’m going to die”. After 2 weeks of emotional hell, I decided that’s enough. I literally made myself physically ill. I’m still here a little over 2 years later with loving friends and supportive family. It’s weird , but I’m happy and grateful because I enjoy every little thing about life and I get up each morning with hope. My faith is my strength and I know God is with me because I feel joy and peace. Don’t get me wrong I get frustrated and cry, then I move on. I went from braces to cane to rollator and now a wheelchair. Just my legs are involved. I get through each day with the love of my husband, prayer and humor. Each day is a gift. It is what it is. I’m blessed because I know to enjoy life. Some people have everything and are miserable. Rejoice in your spirit
I was diagnosed with ALS in Aug. 2012. I am 58 years old. We all die, but really you never know when, or from what. My wife and I lost our son at age 21 July 5, 2010. He was hit head on by a 53 ft. distracted tractor trailer driver, on a highway. He was going 68 mph and lost control. Since being diagnosed with ALS, I had to quit work, and go on disability. I was still bowling, running, played volleyball, and golf. I can still walk, but I need a walker, and rarely use a cane. ALS is suppose to be a death sentence, but staying as positive as you can, inspires many people. I think because of the loss of my son. It helps me deal mentally better with my ALS, because losing a child is the worse thing that could happen to a parent. I am fighting, with a hope for a cure. I do struggle at times, feeling useless, but I still golf carefully, and hope I still can in 2015. Try to stay positive. I really helps to get out and socialize. Keep your mind as busy as you can. Don’t feel guilty if you sleep or nap more than normal, your body needs the rest. Try going to an ALS walk or support group. Talking with other ALS patients really helps. Keep your hopes up, the cure is hopefully coming soon. Remember try to stay positive, and don’t be afraid to die. Someone you know will always be with you. Good luck to all!!! Paul
loved it!! Awesome
While what you said was all basically correct, simply a positive attitude and a good motivation speech does not make the legs move or breaths any easier to draw. You see, I watched what stole every breath from my mother after it took her legs, her speech, her ability to swallow and then her last breath. It wasn’t like we had not been faced with a “terminal illness” before, for you see she was diagnosed with liver cancer 11 years earlier and after being cut in half to remove this tumor that threatened her existence it was by the grace of God we had her 11 more years. So, while I get what you are saying, it doesn’t apply to everyone’s case. My mother fought this disease til she took her last breath, does that mean she gave up, no it doesn’t. Does it mean because her and millions of others that have been claimed by this horrible disease just weren’t “positive enough”, no, it doesn’t. I’ll tell you why…because being negative did not give her this disease just like being positive could have saved her or countless others from it.
I needed this today….thank you! <3
Anita, I’m so sorry about your mom. My message is not that being positive can save us, nor is it that negativity is the reason for our illnesses. I’m simply saying that words matter, and that it’s good to think about how we want to define ourselves and our situations. My best to you.
Paul, big hugs to you. I am terribly sorry about your son. And I think it’s wonderful that you still golf!
Love this, Donna. Thank you!
xoxoxo
Thank you, dear friend!
Good points, Vesta, thank you.
Hi Sara,
I used to work for your husband as an editor during his publishing days at Cahners/Reed Business Information in Chicago and ever since a colleague/friend informed me about speed4sarah, I started following your blog, at first occasionally, and now, more frequently.
So instead of continuing to “lurk,” I thought I’d say Hello and commend you for sharing your brave and courageous journey. Your blogs are a magical mix of honesty, wit, realism and optimism, and a source of inspiration.
May G-d bless you with continued emotional strength and physical energy as you continue foraging your own unique path.
Best Wishes,
Barbara
P.S. Please send my best regards to Rob.
Words do matter and can determine your attitude toward yourself, others and this hateful disease. When my Mom was diagnosed she would say that she had ALS, but ALS did not have her. Her attitude toward the disease was one of the many things I loved about her. She was determined to live her life to the best of her ability as long as she was able. I have a particular memory of her struggling to walk across the living room. She should have been in a wheelchair at that point, or at least using a walker, but was still using a cane. I wan’t to go to her aid, but she said she could make it on her own. She fought to maintain her independence and dignity. She did not want to be defined by ALS.
Yeah, I didn’t really read this as a chapter of “The Secret” at all.
Rather, this seemed all about the hierarchy of terms we use to define ourselves and that “dying” plays low on your list and why that’s so.
I get it. “Dying,” is on everyone’s list – even before our gender is ascribed by nature, dying is the ONE word already on our “list” and we quickly bump it down in favor of more priority terms.
When your parachute doesn’t open at 5,000 feet, it probably makes its way to the top, quickly.
Well said, thanks Jane!
Sarah: You know dying is the last thing on my “Bucket List” but we all have to recognize the fact that eventually we all succumb. Sarah you inspire me and I assume many other people who are reading your BlOG whether they have ALS or not. I used to read your words occasionally but now its the first thing I look for upon opening my FB page. Keep up your beautiful thoughts. Love you my beautiful cousin.
Thank you, Jim! So much love to you and Marie.
“When my Mom was diagnosed she would say that she had ALS, but ALS did not have her.”
Love this.
Thank you so much, Barbara! Hugs from me and Rob.
Sarah,
I have had that kind of day today where I have a pit in my stomach and the feeling of a burden that has crushed my spirit and made me feel ill. In the scheme of things in life though, I have nothing to complain about other than a simple rough patch in life that needs a solution. Reading your blog always fills me with happiness and I think about you so often after reading that piece you did for a magazine shortly after your diagnosis. (I forgot which one). I admire you in so many ways and I wish you continued peace as you go through this journey. Hugs
I rode my Look 585 to Forbes Norris, adorned in matching racing garb….carried my bike in. I was late! Almost 4:00 pm….a beautiful typical October afternoon in the city…..Dr. miller, who I instantly bonded with ( his carbon fiber bike parked behind his desk) welcomed me…..directed me to the EMG exam room on the right…after inserting the probes into my upper and lower extremities….an hour passed….he returned!
” do you want it strait and simple? “He asked… I smiled ” shoot”
“You have ALS”
A single tear fell
My wife was working at Google in Mt.View that day….I had to ride down to Cal Train and meet her….dinner in the city!
We get to the restaurant, she asks how it went….I told her
She pushes me ” shut up” ” give me the paperwork”
I’ll never forget how she looked….she never even considered this could happen the me….superman! US Marine….ride 25 miles a day
We wrapped our arms around each other like never before
” the Cry”
I learned so much since then
As will you
My heart has grown
My ego shrunk
You have a gift …to make people understand
Write
Love
drink wine ( Rutherford Valley)
Enjoy every moment
There are only a few of us
Make it count
Dear Sarah and Fellow ALSers,
How right you all are. I don’t think of myself as having a terminal disease, I just think of myself as SLOW.
My DX started out as PLS, then after 2 years I was DX’d as ALS. I have ~ upper motor neuron dominant ALS. In short ~ my disease is a slower progressing ALS. As of today my legs are weak, I walk full time with a walker, my hands and arms are weak and my speech is very very slurred.
All I can add is to keep praying for God’s graces. He never disappoints. It’s the ONLY way to truly accept this terrible disease, be inspired to work hard at keeping our muscles active, to be grateful for what we do have & can still do & to live as an example of a Christ follower.
I am humbler and more focused on what this “gift of life” is all about. The good faaaar outweighs the bad & my transformation has not been easy. This is a daily, sometimes hourly or even moment to moment struggle. And I still have a loooong way to go.
Last but not least The Ice Bucket Challenge has elevated ALS awareness and funding beyond compare!
Blessings to all who share this disease.