Help Raise Funds for a Needed Lift

Please help raise funds to get a wheelchair lift for a wonderful man, Christopher Spott.

When you’re told the words... "Chris... The tests seem to indicate... and my experience tells me... You

have ALS.” ... believe me, there is no reaction. No comprehension. No reference of magnitude of what

is being said to you. So you go numb. All I can think to ask is, "So what does that mean?"

This is an excerpt from something my uncle shared shortly after telling us his diagnosis. Part of what it has meant to have ALS is robbing of precious energy, resources, and time. It raises anxiety and strains finances. It has made me want to spend as much time as possible with him and help him and his family any way I can.

My Uncle Chris is one of the most lively and generous people I know. His whole life has been spent spreading this spirit. Anyone that's met him would agree that his energy, humor, and attitude are awesome. He's witty, creative, resourceful, kind, and passionate. A builder, doer, adventurer, artist, activist, and above all, a Dad and loving husband. He was diagnosed with ALS a little over a year ago.

The man that has built homes, worked fishing boats off the coast of Alaska, and sang & danced his way down the aisle to marry his love, finds it now challenging to put on his shoes. ALS may be slowly taking his mobility, but not his spirit.

We can help lift up this wonderful man (literally). As Chris, his wife Dana, and daughter Jaimie adapt their home to accommodate his changing physical conditions, they are in need of a platform lift. This will help allow mobility and accessibility for Chris as he transitions to a wheelchair. They're doing their best with what they have but need some help. Please donate what you can.

The renovations to their home are nearly complete and the wheelchair lift, a Savaria Multilift Residential vertical platform lift cost $20,000 with installation.

Below is the whole piece Chris wrote soon after sharing his diagnosis. It speaks not only of his experience but of his character.

Being Numb.

By Chris Spott

It was a subtle twitch. Barely noticeable. A slightly annoying tremble in my left arm. The upper triceps

to be exact. Right where it meets the shoulder. During the day I never noticed it. But at night when I

relaxed into bed, my body laying still for the first time since I got out of bed, my muscles softening up in

their preparation to finally take a rest and there it was... that subtle twitch. Like someone whispering so

softly in my ear. How can one compare it? Think of being in bed and you finally found that comfortable

position and you’re at the perfect temperature of cozy, all the combinations just right to slumber off but

then you got to pee! Ya, that’s how this twitch was.

And of course when it’s night time my brain is finally emptied of all the day to day stresses and worries.

So this is then I get to worry and stress about bigger things like global warming and the oceans filling

with plastic and how will my daughter survive all these things but I can’t because this damn twitch is

pulling focus! At first I am fascinated by this sporadic yet consistent twitch. It’s like I am feeling

someone tapping Morse code on my arm. But then the fascination turns to frustration as I want it to

stop so I can fall asleep. JUST STOP ALREADY!!

But it doesn’t. In fact another twitch begins to appear. This one in my right thigh. Then another in my

left calf. Very, very specific places. And it’s like they are communicating to each other because they

never twitch at the same time. There is a “listen and respond” kind of quality to them. First the left

triceps calls out. Then the right thigh responds. Then the left calf sends up a question. There is a

moment of pause while they think of a response. Right thigh may respond but then there is mass chaos

of heavy debate as each body part twitches a spark of opinion. Over time other body parts join the

nightly debate and it can feel like a lighting storm throughout my body and I just want to go numb!

This is an odd thing... The first of many odd things. Again, just subtle odd things. A little toe drag every

once in a while. A trip up the stairs. “What’s up with my balance in yoga today?”

“Jesus! Will you go see the doctor already!”, my wife says to me.

My doctor checks me over with a concerned look on his face and schedules me for an MRI and tells me

to go see a neurologist. Crazy thing is that the MRI shows that I had a mild stroke a while back that I

didn’t even know about. But I can thing “HA! Something to blame this on!” A stroke seems bad but it is

something you can prevent and recover from with certain changes in your habits. Diet, exercise, work

with a physical therapist and get back to normal.

But this doesn’t happen. In fact it gets worse. I’m playing freezbee with my daughter and I can’t seem

to run. Walking downstairs seems to become a treacherous experience. My muscles start to cramp

every time I do something a bit stressful like reaching over to scratch my back or gripping a hammer. At

night I start to experience strange spasms and painful cramps that I’m scared to go to sleep. And this

makes me grumpy and pissed and I WANT ANSWERS!! So it’s back to the neurologist.

When you’re told the words... “Chris... The tests seem to indicate... and my experience tells me... You

have ALS.” ... believe me, there is no reaction. No comprehension. No reference of magnitude of what

is being said to you. So you go numb. All I can think to ask is, “So what does that mean?”

“Well, you have a slow progressing form of ALS. So that’s a positive thing.”

“OK. So what does that mean?”

“Well... You will continue to have a decline in your ability to use your voluntary muscles.”

“Yes, so what does that mean?”

“Slowly you will lose your ability to walk and use your hands. Eventually it will affect the muscles that

allow you to speak, chew and swallow. You will also lose the ability to breathe on your own.”

“OK. So what does THAT mean?”

“It means a respirator and eventually your death.”

“Wow doc! Did you have to be so blunt? So what’s my timeline? You said slow progressing.”

“Hard to say... 10 years?”

Ten years... again, I’m numb. Ten years. This is a frame of reference I can identify. Ten years. Let’s put

this into perspective. Hmm...Let’s see... I’ve been married 21 years, and it really does feel like it was just

yesterday. My daughter is 18. WOW that went by fast. I freak out whenever I think the 80’s was 40

years ago! I moved to Seattle in 1990, 30 years ago! Time moving so fast that 10 years feels like nothing.

10 years... Huh. I’m 54 now. So I get to 64? Maybe? And this is a drag. My daughter will only be 28.

Will I get to see her fall in love and get married? Will I get to see my wife blow out the candles on her

60th birthday cake? All those things I fantasized about doing in my old age. Retiring and getting a part

time job at the corner hardware store. Doing some theater again. Traveling and growing old with my

wife and becoming the sweet old couple walking hand in hand. All those things will remain just a

fantasy.

So I received this information three times now. Back in Nov. 2019 when it was a low possibility. Again in

February 2020 when it was an 80% certainty and then in the end of March when it was an absolute. So I

am still numb. I heard the information but I cannot process the information. I don’t think about the

information but my head is ringing with the information 24/7. My wife is amazed at how calm I am

about it. But that’s because I am numb. I don’t know why. I just am. I don’t spend my time pinning

over my situation with sadness. I don’t know why. I really don’t. However, inside I am frantic. Feeling

an extreme urgency. Every day so much to do... then a sense of being overwhelmed into submission of

doing nothing. Being numb. Every now and again a bubble of overwhelming emotion will pop out of

me. Like a burp. It might be deep sadness triggered by a song lyric or intense anger when I try to go for

a walk. Intense fear when I see someone in a wheelchair. It’s there for a moment. Then I breathe and

contemplate and it’s gone. And I am numb again.

My death will not be sudden. I am already dying. So it will not be “lights out. Stage Dark exit stage

left.” And as sad as I sometimes get thinking of an early death, I don’t think I am afraid of death. I am

perhaps at peace with it because I know what is going to happen leading up to my death will not be

pleasant. That’s what I’m more scared of. Losing control of everything. I mean, when you’re diagnosed

with cancer, most cancers, you have a fighting chance. There is hope of remission to keep you fighting.

But with ALS, there is nothing you can do about it. Your body will fail and death will come. And that’s a

hard transition of though for me as I have always been a survivor. A hard worker who doesn’t crack

under pressure. I don’t accept defeat easily. If there is a problem I always look for a way to correct it.

Fix it. Make adjustments to make it better. But I can’t do that here. How do I accept help when I need

it? Let go when I can no longer do things on my own? Look at the sadness in my wife and daughters

eyes without going numb?

I had a therapist tell me “Chris. Remember to live with purpose.”

I have always lived with purpose. Every day I would open my eyes, jump out of bed to get going on the

purpose of the day. My tasks that needed accomplishing. But as I lose my physical ability to do those

tasks it is time for me to re-evaluate the word “purpose”. My number one purpose is my wife and

daughter and providing for them. Second is my family and supporting them. Third is my friends and

community and helping out when I can. My purpose still lies within these three, but now it is to

appreciate them and what they give me. To give into and adore their help. And above all... Love them.

Really, really feel that love. Feel all of it! And get over being numb!