Aftermarket add-ons for your wheelchair – Safety and Style

A while back, I wrote about the horn Bill and his brother rigged up for his motorized wheelchair. If you missed it, read "Aftermarket add-ons for your wheelchair - The Horn". Here is the story of a few OTHER additions made to the chair...

We got the wheelchair in early March 2005. To break in the new wheels, Bill decided to take himself to the barber for a haircut. It was a perfect spring day and his favorite Supercuts salon was only about 2 ½ miles from the house. We knew he had enough power, so I checked his wallet on a string, fastened his seatbelt, reminded him about looking both ways at the intersections, kissed his head and sent him off. Little did I know my admonition would come in handy! About two and a half hours later he returned with a buzzcut and a “mad-on”. Dear Lord…he wasn’t gone that long, what could possibly have happened? Through his wild eyes and keyboard banging, I learned that drivers could not see him, they often honked at him, and a couple of times he felt really terrified. For the record, it’s not easy to scare a guy who made his living by running into burning buildings!

Over the years, I’ve learned that there are times when it’s best to just listen and not try to do or say anything. This was one of those times. Once his blood pressure was back into the range of normal, he announced that we were headed to a bicycle shop and Home Depot, in that order. I grabbed my shoes, my handbag and the car keys, and loaded us up into the van.

We got to our favorite bike shop and he sped right to exactly what he wanted – a bright orange flag, the kind that parents generally add to a tricycle or the bike of a small child. Next stop…Home Depot. That part of the trip did not go as smoothly! He was having a hard time explaining to me what he had in mind. Never mind that he had to use “talky” to try and translate! We started to draw a small crowd! Frustrated for both of us, I told him to stay put and went to find a hardware guy! The universe was truly watching out for me that day, because the first guy I found turned out to be an angel in an orange apron! Within just a few minutes, he completely “got” what Bill was trying to accomplish. While he was looking at the chair, he noticed that Bill had strategically angled his walking stick between the chair seat and the handles. He asked if that was working and the answer was “only part of the time”. They had another quick round of discussions and our new friend set about making the necessary alterations. About 20 minutes or so later, not only was the flag attached to the chair, but so was a piece of PVC piping. Both the flag and the piping were mounted to the back of the chair with metal brackets. The walking stick fit neatly into the pipe and his baseball cap fit over the pipe, keeping both close at hand. The flag actually had a joint, allowing me to detach the top part of the flag so that he could get in and out of the van easily. When it was in place, the flag extended approximately 3 feet above his head. It was just enough to make him feel safer when he was out and about on his own. It was really quite ingenious!

A few weeks later, our good friend “Aunty Em” gave him a bouquet of bright yellow (his fave color!) silk daffodils. He loved them and immediately asked me to stick them into the PVC pipe to wedge the walking stick. Turns out, the rattling was making him a little crazy and this was a perfect, stylish solution! The daffodils were a small bit of sunshine wherever he went and never failed to draw a smile.

In addition to the normal wheelchair adjustments and equipment additions we made to accommodate ALS as it progressed there was one final bit of flair added. The chair we received came with 3 sets of removable fenders. So his best friend took the silver set and with the help of an artist friend who details fire engines, added some hand painted flames to the otherwise vanilla looking fenders. When all was said and done….it looked like he’d won a trip to the reality show “Pimp my Ride”!

The addition of the flag allowed Bill to feel more confident when he was out and about on his own – a true blessing which allowed him to keep his independence just a little bit longer. The flowers and the flames were the icebreakers that made the chair a little less threatening to strangers and children. For me….I just smiled and was thankful that ALS only got his body and not his spirit!

Hey papa....I'm doin' OK!

I no longer have men to honor on Father's Day. Big sigh! I am incredibly grateful to my mom who had to step up way too early to fill both roles when my dad was killed in 1986. She is awesome! I spent the weekend with friends and strangely, my dad and both of my grandfathers have been very close to me today. Note to self...it's probably because I finally slowed down a bit so that I could hear their wisdom! It's the end of the day and I've actually been feeling a little sorry for myself. Boo hoo...pity party's over!

A short history! I'm the oldest of three and my father's (and mom's) first daughter. I was the first grandchild for my mom's parents and the first girl for my dad's parents. In sales, this is called the "sweet spot!" My sister-in-law Flo reminded me tonight that I was truly blessed to have a dad who told me (as did hers!) that I could be and do anything I wanted. Both of my grandfathers spoiled and shaped me with equal parts of love and discipline. Over the years, I've spent countless hours crafting a card or saving money to purchase just the right card and gifts to honor the great men in my life. Tonight I realize that I honor each of them with the gift of the woman I have become, complete with a little tiny spark from each of them. Here are a few of the many lessons I have learned from three great men.

At two (ish), I was a driver...no surprise to those that know me, but in this case it's not a personality trait... I really thought I was a driver! I was left unattended for a split second, crawled up into the driver's seat of my grandfather's car, pulled the gear shift into reverse and gleefully rode backwards, down the driveway into the street of a very quiet suburban neighborhood in Van Nuys, CA. My Grandpa Bernie was a fair, but stern disciplinarian and as soon as I was pulled safely from the driver's seat, he administered a single, very firm swat to the seat of my too young to drive bottom. Tears ensued. I went to the judge of my favorite court...my dad...knowing that through my tears, justice would be served! "Grampy spanked me!" My father, an equally fair man heard both sides of the story, held me in his arms and decided in favor of the defendant "You probably earned it!" Case dismissed. I learned very early that there will always be consequences for my actions, but that I could always count on my dad to hear my side of any story. I love this photo of my sister "J" and me which was on my grandfather's dresser for as long as I can remember.

I moved away from home when I was about 23. My parents were equally supportive and helped with the move, but it was my dad who drove with me from Concord to Petaluma with the last load of my belongings. We talked about a lot of things that day, but I remember asking if he was going to miss me once I moved out. I had the cool parents growing up! After a long pause, he said no, that he was going to miss my friends. I was crushed and could not hold back the big aligator tears of my disappointment. He pulled me close and said that I would always be in his heart, so he would never actually miss me. It was a small consolation at the time, but over the years, I've come to understand this single moment in time from his perspective. As a parent, you pray that your children will make good choices when selecting their friends and associates. My parents believed that your character is measured by the company you keep. I am truly blessed and always have been, with some extraordinary friends. I have friends today, that never knew my dad, but I know in my heart that he would have loved them and would be proud of my choices!

From my grandpa Mac, I learned grace, quiet dignity and the fine art of entertaining seven young grandchildren at a formal dinner table. You can see from the photo there was a certain twinkle in his eyes that drew everyone in and made them feel special. My grandmother Gladys was certain that it was her sole responsibility to ensure that we were instilled with civility and table manners. She did a great job, but kids are kids and sometimes you just have to "bust out"...even if you're a big kid!! My grandfather would never defy or challenge my grandmother openly...that could only lead to the woodshed! However, he was a kid at heart and would slip us a piece of forbidden candy, whisper something funny to one of us and ask us to pass the "secret" to one of our parents, or some equally mild mischief. To which, my grandmother would often raise an eyebrow, give us all "the look" and order would once again be restored to her beautifully set table. At one holiday meal, with 15 or so of us seated around a very long table, my father (seated at one end) asked his father (seated at the opposite end) "hey pop, can you toss me a roll?" Without hesitation, my grandpa Mac selected a roll from the linen napkin lined basket and launched a perfect pitch to my dad, who was equally quick to raise his hands and form a two handed catcher's mitt. Thud! All eyes turned to my grandmother who had moved to the kitched for something. Not one single breath, peep, twitch, blink, or other movement came from 7 awestruck grandchildren and 2 nervous mothers, for a full 30 seconds. You could have heard a pin drop on the carpet!!! A (very, faintly) fleeting smile accompanied her trademark raised eyebrow and everyone let out a collective breath. I can only imagine the conversation my grandmother had with my grandpa that night after we were all safely in our respective beds!! The lesson I learned was that good table manners matter, sometimes you need to be serious, but when it gets too serious, it's a good practice to toss a roll!

My dad was and will always be a super-hero. This is one of my favorite photos from when I was in Job's Daughters. The final lesson learned from my dad that I will share tonight is this. It is not the job of parents to just hand things to children or to do all their thinking. My dad told me regularly that his official job was to teach me to think for myself. He and my mom believed that parents are responsible for raising children who can operate independently in the world. His job was to think for himself and just stay a little ahead of me so he would always seem to be wise!

If you think about it, it's really too much work to think for two people. My gift to my dad tonight is to acknowledge the following exchange between us... the coolest gift my dad ever gave me. "Dad...I'm doing/planning to do XYZ". "Are you sure you want to do that?" "yeah dad...I'm sure". "Are you SURE, you're sure?" "Absolutely!" "OK. I have band-aids and bactine ready on the sidelines. The next time we talk, I'm gonna patch you up, pat you on the behind and send you back into the game...cool?" "OK dad...what is it that I'm not seeing?" "I raised a very wise and beautiful daughter!"

To my dad and grandfathers...you rock! I miss you so much, but know that I am a living tribute to each of you. I am grateful for your love and strength. To all the dads out there....EVERY SINGLE DAY is Father's Day. Hug your daughters tight and tell them you love and respect them. Remind them daily they can do or be anything they choose. Tell them you are honored they carry your name and that you are their #1 cheering section. Tell them you will always be on the sidelines with bandaids and bactine. Love them as you patch them up and send them back into "the game" of life. Tell them you pray they will marry men who will respect and honor them. Teach them to hold out for those honorable men. It is the single best gift you can give us.

"It gets a whole lot more complicated when you have kids...The most terrifying day of your life is the day the first one is born...Your life as you know it is gone. Never to return. But they learn how to walk, and they learn how to talk...and you want to be with them. And they turn out to be the most delightful people you will ever meet in your life." Bob Harris, Lost in Translation

Learning to laugh

ALS has taught me to laugh. Really laugh...from your belly until you start crying...laugh! And...I'm so very grateful! There are so many scary, crappy, outrageous, ridiculous, sad, terrifying, (name that emotion) moments with ALS. With that said, there are also a lot of really funny (slapstick comedy) moments with the disease, and these are moments I treasure most. They get me through the "I'm so sad I'm sure I can't breathe anymore" moments I still go through almost 4 years later. I have learned..it's not what happens, it's how you handle what happens. Laughter was the life saving/relationship saving option for us. Here are a couple of my fonder moments....

Fun with Feeding tubes

The body is a closed system! When you introduce a hole (feeding tube), you "open" the system - but it can be managed. It requires that you pay attention and be completely present to the moments when the system is open! BIG NOTE HERE....If you don't keep control of a feeding tube, you allow pressure that is normally controlled by a stomach wall to run free, and you end up with stomach contents on the ceiling! This BAD but can be especially entertaining if there was red liquid tylenol going into the tube when you let go!!!! Once I regained control of the tube, capped it off and caught my breath, I laughed so hard I cried!

Speaking of feeding tubes....There was a communicaton glitch between the surgeon and his staff when we had the surgery to install Bill's feeding tube. As we were finishing up in the recovery room, I remember saying to the nurse.."Um...Great…we are the proud parents of a feeding tube. I have no idea how to feed it, change it, burp it or put it to sleep! Now what?" Panic and shock ensued! There was a scramble to get someone to give me the fundamentals before we left the hospital. We got a full training the following day! Lesson learned: Humor helps get you what you need.

Garage Door Opener
Bill's brother Howard and another attorney friend of ours agreed to install a garage door opener for me. This led to the installation of an additional electrical panel. I know…who would have thought that an attorney could/would tackle this kind of task?! Bill was a little frustrated that he was unable to help, so he set about creating some mischief for his brother. He found a laser level in his toolbox, waited very patiently, and chose his time to shine a light on the work.

As Tom and Howard were very intently putting the final touches on the work, a tiny laser dot appeared on the wiring. Both men were fully aware of what they should be seeing on the panel and a laser dot was not on the list. Quietly, because he could not speak, Bill was doubled over in hysterics at his brother’s panic. Once the hysteria died down, we reminded Bill that any judge worth his robes would have dismissed any murder charges levied on the guys as justifiable homicide! I think of this story every time I watch a Powerpoint presentation and laugh! Oh…and the garage door opener still works perfectly!

Truly Living, an essay by Julia Miller

Angels are delivered to us every day. Sometimes we know...and sometimes we don't. We were fortunate to receive help from EXTRA HANDS FOR ALS, founded by ALS patient Jack Orchard and his wife. Matt Nevitt and Julia Miller were the students who came every Monday for about 6 months to be with Bill and me, to help out and be our "extra hands". I will always be grateful to, and hold a special place in my heart, for both of these sefless young adults. Today, I share the essay that Julia wrote about her experience. Enjoy!

Truly Living

When I first signed up for Extra Hands for ALS, I thought it would be a nice way to spend free time, volunteering with real people and trying to make the world just a little better. I had no idea that the day I walked into 1847 Linwood Drive would forever change me. Extra Hands for ALS is a program through which patients with Amyotrophic Lateral Sclerosis (“ALS”) are connected with volunteers who help them accomplish things they no longer have the ability to do on their own. ALS (commonly known as “Lou Gehrig’s Disease”) is a heartbreaking and debilitating disease that slowly deteriorates a person’s motor functions yet leaves the brain untouched, in effect holding them prisoner in their degenerating body until they die. ALS is a terrible disease, both for those who have it and for those who must watch their loved one slowly die in front of them. Yet to die from ALS is relatively easy compared to living with it. It requires an amazing strength and bravery, and an acceptance that our time alive on Earth is not guaranteed. Although he knew that this disease was terrible in every way, my patient Bill Lichtig lived with it with an uncanny dignity and was able to indirectly use the disease to teach me amazing life lessons. And he has changed me forever.

The day I met him, Bill wore glasses, had a cane resting against his knee and two golden retrievers lying at his feet. He stood up to shake my hand in greeting although I could see it pained him to do so. This was my first glimpse of what I learned was his steadfast resolve to live despite his disease, an amazing bravery I hope to one day see in myself. Bill has left me, but he leaves me with resonating lessons about three things: love, life and laughter.

Bill was a lover, of people, of life, and of laughter. You cannot just teach someone about love, but you can show them. Bill showed me that you must let people love you, even when you do not want to. Bill’s wife, Kathie, was his primary caregiver. This meant that she was in charge of feeding him, among other things. Seeing Kathie fearlessly feed Bill through his feeding tube truly showed me love. She chatted with him about unimportant things while she did it, I guess in an attempt to show him it was not a big deal to her. Yet through that action I could feel the outpouring of true, deep love they felt for each other. Kathie could have had a nurse take care of Bill, but she did not; Bill could have told her he wanted a nurse so as to not inconvenience her, but he did not. Bill allowed Kathie to care for him because he loved her, and Kathie never stopped nursing Bill because she loves him. There is a song by a band I like, Death Cab for Cutie, who sings a song with the lyric: “Love is watching someone die.” When I first heard those words I instantly thought of Bill and Kathie, who have taught me more about love than I may ever learn the rest of my life.
Besides love, Bill also taught me about life. One day, before he could no longer comfortably chew them, Bill was enjoying his daily snack of Oreo cookies and he said to me: “Cookies fix anything.” While unfortunately cookies could not physically cure Bill, they symbolized a deeper meaning. Cookies were all the small things Bill did to enrich the last part of his life. Sitting outside in the sun, petting the dogs, even sniffing the air in the kitchen as I attempted yet another meal under his instruction. Bill showed me that focusing on small, positive things can help you ignore large negative ones—or at least keep them from ruining your day.

One day Bill, who liked to speed in his motorized chair, was enjoying wine through his feeding tube. He told me if a cop pulled him over he was fine because he could truthfully say: “Officer, no alcohol has touched my lips.” I know his mischievous humor kept him alive when he no longer had the physical strength. This alone proved to me the importance of laughter, and he made me laugh constantly. Once he could no longer speak himself, he used a computerized voice, although typing was tedious and frustrating for him. He maintained his dignity, even when others were not so understanding. For example, he was sometimes mistaken for a prank caller when using the telephone, but his strength to even recount these stories to me displayed an undaunted will to fight his disease. A coward would be embarrassed by such an event, but not Bill—by reliving the experience he was showing everyone he was still here, and still strong.

The most important lesson I learned from Bill came when he told me: “Yes, this isn’t an easy disease to live with. But there’s nothing I can do about it. I can either spend my days crying or laughing—and I choose to laugh.” This statement concisely sums up what I learned from Bill. I learned not to let small things, like forgetting an item on our grocery list or messing up our projects, ruin my day. I learned to see a small mistake as just that: a small bump in the road rather than the end of the world, as I used to do before I met Bill. He taught me that so much of life is mistakes. Who we are is based on how we deal with those mistakes and how we react in the life’s obstacles. We can cry or we can laugh, and it is always better to laugh.

Bill also taught me how to die. August 10, 2005.

Material things don't really matter

I know, we've all heard it! But it's really interesting when you finally "get" it. I'm not great with my ability to totally recall bible verses, but I know there is a passage somewhere that goes something like "ashes to ashes, dust to dust, we shall all return to our maker". Frankly, I'm a 70's girl and think that the band Kansas got it right with "Dust in the Wind", one of my all time favorite songs to belt out in the car....but I digress.

Because, we had a year to spend together and say our goodbyes, Bill and I had the chance to talk about what he wanted, what his life would stand for, and how he wanted to die. At first I was pretty "creeped out" - no one rationally chooses to talk about death, the meaning of life and how you want to be remembered! Do you?? But once he convinced me that he was serious, I swallowed hard and agreed to just listen. Turns out, it took the full year, but it was one of the smartest things I ever did! For the record, it's not easy to have these conversations, but for me, I received the ultimate peace. I didn't have to guess or wonder what he wanted....I already knew.

My husband was a firefighter for 20+ years. He loved his job and was really good at it! He left the department and went to work for Sprint PCS. Again...he was really good at what he did. Up until the day he went on disability, he was actively working with emergency service providers to fine tune the response program for 911 calls from your cell phone in Northern California. Over the years, he touched (and saved) a lot of lives. But he often wondered if it was "enough".

Bill was part of a UCSF memory and aging study, conducted by Dr. Bruce Miller and his extraordinary research team. The sessions were informative and fun - something to look forward to. During one visit, because of the family history of ALS and FTLD, we were asked to consider "gifting" his brain and spinal cord to the research program. It would be autopsied and contribute to the ongoing research. After talking it over, Bill decided that if he never did anything else with his life, at least he could consciously contribute to the process of trying to find the key to ALS and FTLD. Turns out, for him, that would be enough!

On our next visit, we agreed to the donation and signed the necessary paperwork. We were all finished and as we were about to leave, the program manager, after thanking us profusely, asked "what would you like to do with the rest of the body?" eeeeeeeeeeeerrrrrrrrrhhhhhhhhh What?! Turns out, they really wanted JUST his brain and spinal cord. In true style, he quickly typed the following response on his laptop..."Well, I'm not gonna need it!". They looked at me and I (equally as quickly!) assured them that I did not want it! Lucky for us, the University has a Willed Body Program. It's awesome! We signed the additional paperwork and never looked back.

As the ALS progressed, we talked about everything and he even helped with the arrangements for his memorial service. His only request was that when he died, he wanted to make sure that his "never give up" silicon bracelet and his golden retriever, beanie baby went with him. It's a long story about the beanie baby, but suffice it to say, it was important! We ultimately had to leash the beanie baby to his wheelchair to make sure they were always together!

On August 10, 2005, Bill passed peacefully in his sleep. Emmy, the angel aide from hospice, arrived in the early morning to give him his last bath. After a quick discussion, it was decided that he didn't need any clothes - that a clean sheet would suffice for his final ride to the University. That was it! He came into the world with nothing and would leave in exactly the same way, with 2 small exceptions. Truly, material things do not matter in the final hour.

The rest of the hospice team arrived to help me through all of the final details. And finally the team from the University arrived, carefully and respectfully loaded him onto the gurney, covered him with a bright blue, stretchy cover and escorted him back to the university lab. For all that it was sad, the process was actually pretty wonderful. I had little to think about and I was comforted to know that he was in good hands, doing exactly what he wanted to do.

Later that evening, as my head finally hit the pillow, I had a chance to think about the day. I felt really good about the decision to donate, but...I had this random thought! And...from time to time, I reminisce and wonder about the student who opened the drawer to begin the autopsy. I can't help but wonder if they thought "hmmmm, naked guy with a bracelet and a beanie baby. I'll bet there's a good story here!"

In the end, it's not the material things that matter. I believe it's how you lived your life, thought of others and made people smile.