Friday, December 26, 2008

December 26th on the Beach

My friends and family met at a beach in Alameda to mark the anniversary of my ALS diagnosis, My friend Linda ended up at the wrong beach but what she wrote of her time describes the scene better than I ever could. She wrote:

The afterglow of the sunset was astounding,…The pampas grass became my shield from the wind as it swayed gently in the breeze while I took in the quickly changing dance of color before my eyes. Tide pools left behind by the receding bay reflected iridescent swirls of pink and orange. Flaming red rimmed the edges of the mountains in the distance until monotones drowned out all color. In a more brutal reflection, the monotones strangle all color from existence, but we know life goes on under the surface, and life replaces death with limited exponential frequency...

The only addition I would make to Linda’s description was how magical all my loved ones looked skipping rocks in silhouette against the sunset, their figures like shadow puppets against a pink and gold scrim. I am usually the type to be right in there – part of the action – but tonight I got to watch. It was sweet.

My family members and I spoke but for me the most gratifying speech was Maclen’s which I’m somewhat reluctant to print since it’s so incredible I may seem like I’m bragging but is so well-written and amazing I must kvell. A mother’s prerogative.

I close with his words which is ultimately how this blog will end when I’m no longer able to write it in any fashion.

Here’s Mac:

The theory of relativity says that if you flew a spaceship around the earth fast enough for long enough, everybody on earth would have lived fifty years of their lives in the time it took you to live a few years. How can one possibly sum up the life of a person who crammed eighty years of joy and eighty years of pain into 46 years? Carla Ann Zilbersmith, who I am privileged to call my mom, yes, I said the word, was not a singer, nor was she an actor, nor a director, nor a writer, nor a comic, nor an improvisor, nor a professor, nor is she a lady on death's door. She is an entertainer. She is a Bard. She is a professional human being.

Can you explain Wedding Singer Blues in a sentence? How about War and Peacemeal, can you find a genre for that? The works are like the woman, Sui Generis, and compelling to the last. People wonder how she is able to be such a faunt of creativity, and the answer is that every day for her is a performance. Not in the sense that she hides anything from anybody, so much as that we all wear masks when we associate with people, and she feels that, as long as we're all giving a performance, it might as well be fun as hell. Her artistic works are so full of contrasting humor, poignance, and philosophy because that is what her life is full of. Conversations with her have made junkies clean up their acts and have made straight-laced suburbanites loosen their tie.

But the way she has made the biggest impact in the lives of so many is that she is a mentor and a friend to so, so many. This is because she is rapport incarnate, and knows what people want to hear. It is because she cares about others more than herself, often to the point of folly. It is because she allows people to act in a way that they don't feel comfortable acting around anybody else. For somebody who lives life like a play, she sure knows how to make a person break character and talk about what's really on their mind. When Carla Zilbersmith walks into a room, a bus, a party, or any other area in which there are numerous people, she will make friends, learn stories, and make people think. Growing up around her was like growing up around a celebrity, not only because she has more friends than anybody I have ever encountered, but because she had a way about her that made people who didn't know her feel like they did. Whether on stage or in her life, Carla's aim was to please. Not because of the adulation which she received for all of her endeavors, though there was a significant amount of that, and not for the massive amounts of love that she generated, though there was a lot of that too, but because she likes making people happy.

Why would a woman like this get a disease like this? Random fucking chance. But this is not a tragedy. Tragic, is what you call somebody who lives to 60...70...80...90 and never for a DAY lives the way that Carla lives nearly every day of her life. Tragic, is those of you who let this event stop YOU from living the way Carla lives every day of her life. Tragic, is the fact that, the less Carla Zilbersmiths there are in the world, the less people are going to be called on their shit, the less people are going to be changed, and the less people are going to learn to really live their life. The odds are that Carla isn't the only one here who isn't going to reach fifty. Sound depressing? Well, it shouldn't be. We need to start playing by our own rules, the way my mom has for 46 hilarious and tearful years, because we shouldn't need a crisis like this to trigger us to live our lives, nor should we need a human being such as Carla Zilbersmith to trigger us to live our lives. So let's keep living it, let's keep living it, really living it. The help that Carla has received from her legions of friends has done nothing short of restoring my faith in the human condition, but do you want to know what you can do that will help Carla the most? Use humor to take arms against the slings and arrows of outrageous fortune, use love to combat uncertainty, find happiness wherever you can, and, most importantly, live your life until you can live no more. My mom does.

Wednesday, December 24, 2008

Traveling at the Speed of Enlightenment

I couldn’t breathe on Monday night for about a minute. Mac was at his Dad’s and I was alone and I couldn’t breathe. Now I remember Nurse Dallas told me to relax when this happens but I tend to relax by….breathing! I was scared and calm at the same time. I spoke reasonably and amiably to myself like a pilot talking to his passengers. “Good evening, this is your Captain speaking. I’d like to welcome the central nervous system as well as those of you traveling in autonomic class. Estimated travel time today is 2-3 years. Now, if I can just direct your attention for a moment to your upper body, maybe I could juuuuust get you to drop your shoulders, open your palms and let your arms dangle. Relaxing, isn’t it? Let me remind you to stay on the bed in case you faint. On behalf of myself and the whole crew we wish you a very pleasant crisis and hope you’ll die with us again.”

Eventually I was gulping some air, then breathing. Big ups to yoga and meditation, my sherpas on this crazy trip.

We are approaching the one year anniversary of my diagnosis (Dec 26). On that day, Edith, my dad and I were dumbstruck by the news that I actually had the disease I said was the one thing I couldn’t handle. My Dad and I are Canadian by nature (and birth) and Edith has a very Japanese kind of composure so the three of us combined couldn’t manage to russle up much of a scene, however the room was thick with emotion. Mac actually pinched his cheeks to see if he was awake when I told him. The grief I felt – and the grief of my Dad and Mac – seemed to me at the time quite unbearable. I felt more scared and alone then than I did on Monday night when I couldn’t breathe.

Yet here we are. On Saturday my hand was so tired ( I was using it by working…for money!) that Sofia had to feed me in front of the tech crew of the Zellerbach theater.

And we laughed. Hard.

I have gotten used to the wheelchair and I have made friends with it.

I have the best selection of cripple jokes, ALS jokes and dying jokes the world has ever known.

I dreaded having aides yet I love Mayra and Natta, my lovely accomplices.

I am a happier person than I used to be because I consciously make the choice not to be bummed by stupid things.

I would happily accept a cure but I wouldn’t give up this year and what I’ve learned about you and myself for anything except if giving it up was best for my son.

ALS is the worst thing that’s ever happened to me and it’s also the best Christmakwanzakah gift I have ever received. I can’t find the words to make this make sense to you so you’ll have to believe me. I’m not as full of shit as I sound (thank Fiber-sure!)

So I’d like to say to Santa – Listen man, I apologize for calling you a douche bag last year and for saying the ALS gift was lame – I mean it is lame (get it? Lame?) but it’s also pretty cool. Oh and Santa - I want to thank you for sending Allison home to Annabel, Atticus and to my baby brother Jason.

Thanks to you Muselings for your overly generous blog comments, your generosity and your love throughout this tough and utterly awe-inspiring year. I will meet with a small number of folks at the beach on Dec. 26 to mark the date and usher in a new year of love, loss, stretching, growing and being a grateful witness to it all.

And naturally, I’ll blog about it.

Sunday, December 21, 2008

Allison is improving

Thanks to all of you who expressed concern for my sister-in-love, Allison. She had Typhlitis, a painful and dangerous inflammation of the colon. The case she had was aggressive and it was dicey for awhile there. My brother did yeoman's work, keeping it together for the kids and Allison. She has been moved from ICU into a regular hospital room, her white blood cell count is up and she impresses the doctors with her rebound. Turns out that thanks to Allison, we will be going to Australia after all. She apparently said (from her hospital bed) that it was unacceptable for us to miss the trip on her account. So off we go on Saturday and I will sing at the Sydney Opera House steps (her challenge to me) just for her.

Friday, December 19, 2008

Holiday Letter

Dear Muselings,

I sent this out as my seasonal letter:

Dear Friends;

Last year at this time I wrote to you to tell you about my ALS diagnosis which followed on the heels of the dissolution of my 20 year marriage. I told you that like Lou Gehrig I felt like the luckiest person on earth and like Louis Armstrong, “I think to myself, what a wonderful world.”

I write this the day after my sister-in-love ( as my accomplice Mayra calls her) came within minutes of death. I write this as she breathes through a tube and a snow storm threatens to keep her separated from my brother. She has Stage 3 breast cancer and was rushed to the hospital yesterday with an intestinal infection and no white blood cells to fight with.

I write this with a failing right hand ( left one is pretty much useless) from a wheelchair where I permanently reside.

I write this as a former singer, teacher and actor having taught my last class, done my last show and this Thanksgiving at Yoshi’s, sung my last gig.

I choke on food and water, my speech slurs when I’m tired and breathing is now more labored. I need someone to dress and shower me and prepare my food. Sometimes, I don’t know how one person is supposed to take all this.

But guess what? I stand by last year's letter to you. I defy any cocksucker gods to try to get me to stop loving this beautiful fucking world and all of you who have sent me, Maclen and my family emails, blog comments, tasty meals and your prayers. You have buoyed me, sustained me, made me laugh until my larynx spasmed, given great (and shitty) advice, driven me all over the Bay Area, taken me to the hospital in the middle of the night and to the butterfly sanctuary in the middle of the day. Your faces shone out from the audience at gigs, your music propped me up better than any walker.

How could I possibly NOT be grateful when I live in, as Shakespeare wrote, this “brave new world that has such people in it”

Here’s a bit of what I’ve learned this year:

The thing you think is the worst thing imaginable can be endured and occasionally even enjoyed.

Losing things makes you fiercely love what you still have.

Plans don’t always work out perfectly. Big fucking deal.

If you read all the titles of all the self-help books and treat them as a kind of list of rules, you don’t have to waste your time on reading the whole book – Don’t Sweat the Small Stuff – nuff said! Bad Things Happen to Good People – no shit, Sherlock.

Show up to your own life. Disable the auto-pilot and live this bitch.

It’s more fun to write about snogging British men than it is to actually do it.

Even if it hurts to laugh, even if it makes you stop breathing, it is the best thing to do. Laugh every day.

Have as much sex as you can. I am as serious as a heart attack.

When you are facing death you won’t give a shit about the shit you have. You will yearn to hear your kid laugh one more time, for an old lover to hold you and for your friends and family to be near. You’ll remember wet sand between your toes, the smell of fall leaves burning, the feeling of holding a warm cup between your hands and soft lips touching yours.

When you have a fatal, debilitating illness, people will listen to anything you say so you
can pontificate until their eyes all roll into the backs of their heads. It’s awesome.

People always ask me “is there anything I can do for you?” Well, I am very well taken care of but there are two things:

1) Set aside time to live like you are going to die and then love the fuck out of your life and the people in it.
2) When you see someone in a wheelchair, don’t treat us like we just won a medal in the Special Olympics. When you patronize us, we silently judge you.

So there it is. My second annual weird-as-hell form letter. Have a great spending season – remember – the economy is counting on your conspicuous consumption.

As always, I will update regularly on the blog and plan to start vlogging in the New Year as well. I think vlogs will be posted at

With love, gratitude and a little crippled attitude

Thursday, December 18, 2008

Prayer Time

This afternoon my sister-in-law, Allison, was rushed to the hospital with a high fever and chills. By late afternoon it looked serious and in a couple of hours she undergoes surgery for a rare condition that is caused by being neutropenic ( no white blood cells to fight infection). It's a very rare condition that her oncologist has only seen once before....and that case was Betsy - Allison's sister. It's serious and my brother is a wreck. If you like to pray, please send out some good ones for my sister-in-love (as Mayra pronounces it).

Sunday, December 14, 2008

The Sydney Challenge

It's that time again - I'm going to Australia and I'm accepting non-snogging challenges. i'll take 3. So far I have one from some former students which is whenever someone asks me why I'm in a wheelchair I have to tell them a dingo ate my baby. I leave December 27th so put your thinking caps on now.

Thursday, December 11, 2008

And P.S.

I was getting off the bus this afternoon. The driver had parked by a steep driveway. The ramp is also steep. My chair got trapped in the valley between the two slopes. I am sitting at an angle for 20-25 minutes, unable to move up or down, in the cold. People get off the bus, pissed that I'm holding them up but not inclined to help. Finally I call Kathy who lives nearby and just hearing her voice makes the tears spring to my eyes and I have to blink hard to stop from making a spectacle of myself, plus I have trouble talking after I cry - I seem to literally drown in my own tears. SO my acupuncturist shows up at the same time as Kathy and her giant son Eric and they unwedge me and off I go to get needles stuck in me.

Watched Cadillac Records that night with Gerry and that's when the tears hit. My first music movie as a former singer. God I love singing and I used to be able to do everything Beyonce was doing vocally in that film. Now i hang on to a tune for dear life. I cried through the credits. I cried until the place was all clean for the next show. Gerry was a rock solid friend and just held me and let me cry. I told him that sometimes I don't feel big enough to hold all of this.

And now I avoid going to bed as long as I can because tomorrow I have to get up and start again, like Sisyphus rolling that damned rock up the hill, I have to find my way back to the place I love to be - the place of gratitude and acceptance of this cocksucking disease.

Wednesday, December 10, 2008

Bitch, bitch, moan, moan

It was California cold last night – in other words low 40s. Mac and I waited the length of a presidential primary for our bus only to be told when it arrived that the lift was broken and we had to wait for the next one. We got home from our 5:30 movie at 10. On the way back a crazy man ranted about black on white racism on the transit system, while sitting next to me pretending to be talking on a cell phone. This included telling the “person” on the other end that he would lose them in the tunnel. Method acting meets crazy. Once through the tunnel he turned his sights on me. He told me I had beautiful hair and not to worry because he “doesn’t hit on people.” “Well that’s great,” I reply. Now when you’re in a wheelchair on the bus you can’t move away from the crazies as you are literally strapped in place with grappling hooks, which are impossible to remove on your own. Of course crazy man got off at our stop and said cheerily to the black bus driver “Bye! Sorry you hate me for the color of my skin!”

And that was the good ride.

The way there, the bus driver tried to not pick us up at all despite us both waving and being right in the bus stop. She was genuinely pissed at having to deal with me. When part of the lift wouldn’t drop she refused to help move it. “Are you really going to make me do this myself?” I asked. She shrugged. At every stop she slammed on the breaks so all of us – especially me – flew forward then whipped back. Unflappable Mac was so mad at how she treated me he took down her bus number.

Still, I greatly prefer the bus or BART to Paratransit which is bumpier and takes 4 times as long.

Not complaining – just sharing. Wheelchairs, my Muselings, are not for sissies.

Handicapped bathrooms don’t have handicapped doors. Opening the door anywhere is a chore.

The bathroom mirrors are too high for a wheelchair.

Most restaurant tables are too low for my legs to fit under them completely so I don’t get close enough to the table - which, since I spill a lot, is a drag.

One step makes a restaurant or store inaccessible.

The shelves and racks at many stores are too close together for a chair to easily pass. I often take out a rack as I pass.

The sales counters are at neck level.

I sometimes wheel a block only to find that there is no curb cut and I have to go back where I started or “jay roll” and risk that a motorist doesn’t see me.

SUVs often don’t see me either way so I have to be extra vigilant.
If the elevator in my building is out, I’m stranded. If there’s a fire, I have to scoot down 3 flights of concrete stairs on my bum and hope I can open the exit door.

I never thought about any of this. It never occurred to me that someone in a wheelchair couldn’t spontaneously pick a restaurant or go for a walk or that travel routes, accessibility and bathrooms had to be carefully considered. I never realized every time my car butted out past the driveway that I was inconveniencing and possibly endangering the scooter lady down the street.

And if it’s a hassle for me, how much worse must it be for people without my support network? I have more help than most folks in wheelchairs, I’ll bet so for me this stuff is only a minor inconvenience. Imagine if you lived alone without a super squad of friends to help you.

Saturday, December 06, 2008

Bravo Boundaries

I received a few blog comments lately that I feel need to be addressed.

I got one yesterday complaining that I didn’t publish their previous blog comments. The person asked if I pick and choose which comments to publish.

Of course I do.

It’s my blog, I can do whatever I want.

In regard to another unpublished blog comment, I need you to know that I am so sorry about your depressed friend but I am utterly unqualified to help anyone with their personal problems. It sounds like your friend needs professional help ASAP. I feel great compassion and sadness for anyone who is suffering, but I can’t take on any new people’s baggage right now since my own and that of my loved ones is fairly hefty. I’m not convinced that I wouldn’t add fuel to the fire anyway.

Finally, the few of you gentlemen who are seriously projecting romantic fantasies on me, please keep them to yourself. If you read this blog and watch my shows you don’t really know me and your courtship doesn’t flatter me, it makes me feel invisible.

Mostly, I want to say that this blog is for me and for my closest friends and family. If someone else gets something from it I’m really happy. I’ve been enriched by meeting Pat, Jay, the Irish sisters and so many of you I don’t have the finger strength to list, but I’m ultimately doing this out of enlightened self-interest. I make no apologies for what I write or don’t write, publish or don’t publish. I have my reasons but I don’t feel any obligation to share them here. I also make no claims to being anything other than an unlucky gal who writes good. I am moved and flattered by the kind words on this blog but I do what I do in order to have a great life, not to be good. I don’t want to be good.

In fact sometimes I want to be bad.

My mother recently told me a story about me as a 4 or 5 year old. I apparently said “Mom, I’m very special - there’s no one else that is like me in the whole world- but everyone else in the world is also very special in the same way, so I guess that makes me not so special after all.”

I haven’t learned much since then I guess cuz that makes perfect sense to me.

Tuesday, December 02, 2008

"Though wise men at their end know dark is right.”

I watched an old 60 Minutes segment about this communication device, which uses thought patterns to help people communicate. The man who was using the device had ALS and could only move his eyes. In order to use the device, the subject has a caregiver put a skullcap on his head and put cold conduction gel into the little holes next to the scalp. Electrodes go into the holes. The man ( I think his name was Scott) stares at a screen as letters go by and when he sees the letter he is looking for, a part of his brain lights up and the computer knows which letter to choose. The process takes 20 seconds per letter.

My reaction was amazement of course and also a realization that I am not going to “bank” my voice as I had originally planned. Voice banking is the process of recording your voice saying as many words as possible to be used later for communication devices. The whole thing is not a fit for me – I don’t want to live beyond a time when I can breathe my own oxygen, eat my own food and speak my own words. I don’t want to dig my fingernails into this life, clutching until I draw blood. I DO want to go gentle into that good night.

Does that make me a coward or brave? In my brief time as a disabled person I’ve come to realize that living life from a wheelchair can be tough at times. People who choose to hang on hoping for a cure that may not come in time, who endure the many tiny indignities that accompany each day with this crazy disease, and who stay positive amidst the slow leak that is ALS – well they are heroes in my book. I just don’t think that’s me and I don’t think it takes any less resolve to NOT do the ventilator, or NOT do the communication device or NOT take any other measures that would keep me alive but not necessarily living. I think it takes strength whichever road you choose.

A family friend of my former in-laws (I’m now an outlaw) was literally yelling at me on the phone tonight to go to some website that has a cure for anything, “even cancer” as though that would help me. My son wrestled me for the phone so he could hang it up, but I was able to out-yell the guy in time to save him from Mac’s wrath – Mac who told me tonight I was a 1984 Gremlin with hover capability and no engine. When I asked him what he meant by that, he said “You’re of no practical use, but you’re really cool.”

He learned how to do the Heimlich Method tonight (I’ve been choking) and he also made me laugh my ass off right at a moment I was resolved to feel sorry for myself. I couldn’t grab my wallet with my good hand so I said “I hate my fucking hand!” and he said “Really? I'm rather partial to my fucking hand so I guess that’s where we part company.”

No one who knows me and Mac at all would think for one nanosecond that he isn’t the first thing on my mind when I ponder these (hopefully distant) future decisions. He’s also the last thing on my mind. That said, I promise to shut up and let others die however the hell they want to and all that I ask is to be afforded the same courtesy.

My Mother, Myself

Like many women, my mother and I have always had a tricky relationship. I wonder sometimes why mother/daughter and father/son dyads are more often more fraught with challenges than their father/daughter and mother/son counterparts. Is it that a same sex parent has more trouble differentiating from their child? Is it that the child identifies strongly with the parent who shares their gender and looks to that parent for guidance in how to be a man or woman? Does gender even play into it?

Regardless of the reasons, I find myself wishing I could connect with my mother in a way that would bring her peace and happiness but always holding a bit of myself in reserve. As I’ve said before, life is full of sad things that can’t be fixed. My mother and I have both worked so hard to understand each other and she has made huge changes in how she interacts with me. Changes that involve a lot of determination. We get along better now than I can ever remember and yet there is this wariness that may never resolve given our current time constraints.

It got me thinking of what I would like to leave to my mother. What I came up with was a list. I’d like to leave her a list of all the ways I’m cool because of her and I’d like her to know about these things while I’m still alive so here it is:

1)Love of color
…or since my mom is Canadian, “colour”. My mom’s townhouse was a riot of purple and pink and her clothes insured that she would never be hit by a car. The dress she wore to both my wedding and Jason and Allison’s wedding was a symphony of greens,pinks and blues. When I put my apartment together I remembered her admonition: People who live in beige houses have a beige lives. Color makes me so happy and I get that from her.

2) Appreciation of flowers.
Whenever I worked in my garden I remembered how my mother loved every plant and leaf. I surprised myself by how many names I already knew and by how good I was at making flowers grow. (again I picked BRIGHT colors)I can’t garden anymore but my friends made me a beautiful deck garden and I love love love fresh cut flowers, especially gerber daisies.

3) Dancing and singing in the house.
I did this until I was in the wheelchair full time – dancing even in my walker. After my folks split, my mom said “please, God, send me a man who can dance.” She would boogie around the house and sometimes in public, which horrified me. Many years later, I was in Vancouver on New Year’s Eve and a bunch of Hari Krishnas were dancing in the street by Robson Square. I joined them much to the horror of my teenaged son. I get that from my mom.

4) Dirty humor and shameless flirting.
Mayra my accomplice said to me one day, “When you was walking you must have been very dangerooz.” Recently I pondered aloud to a friend “What if I had the sexual confidence I have now with the looks I had in my 20s?” “You would have died of AIDS instead of ALS” she said matter of factly. My mom has always delighted in a good filthy joke and is a champion flirt.

5) Cursing.
What the fuck else can I say?

6) Guessing the ends of movies.
I used to think she was a witch until I could do it too. This used to piss off my ex to no end. Happily, my son has inherited this gift so someone can continue to torture my ex long after I’m gone.

7) Excellent fashion sense.
My mom was always turned out well and looking like a million bucks. She’s married to an older man now so she doesn’t need to try so hard but man did she look great all the time. I used to be jealous of how snappy she dressed and how dumpy I looked. It takes awhile to learn how to dress for your body and she really knew how to do that.

8) Open door policy.
Every day when I came home from school there was someone at the table having tea. We could have used a revolving back door for friends and neighbors. My mom drove her friend Sylvia shopping since Sylvia didn’t know how (to drive – she knew how to shop, oh yes she did) and if I couldn’t find her, she’s be at Sylvia’s helping make drapes, homemade granola or working on some other project My mom loves company and so do I. This has made the transition from independent to dependent much smoother for me.

9) Love of public radio
It was always on and when it wasn’t, she would say “ I heard the most interesting thing on the CBC today….” For me it’s KPFA or NPR.

10) Irrepressible love of the every day things in life
To be truthful, many was the time I felt overcome with a homicidal rage when we would be walking to a specific destination and my mom would gasp loudly, scaring the crap out of me, exclaiming :”Oh, Carla! Look at the flowers!!” She would proceed to smell them, admire them, talk to strangers about them, etc. all while I silently shouted “let’s get a move on, people.” Now I am the one to hold up the expedition party to smell a rose, watch a hummingbird or enjoy a funny scene played out on the street. I don’t gasp audibly but inwardly my heart yells “Holy shit – look how amazing this is!”

11) Humor with an edge
Growing up with a handicapped and very troubled brother was no picnic. I have learned from both my parents that a little humor goes a long way to getting through adversity. My entire family is hilarious and I have memories of all of them cracking me up at one point but my mom is perhaps the most devilish in her humor. I remember (not entirely fondly) family car trips in which my dad took his goal of how many miles we’d drive on any given day so seriously that you’d think we were escaping Nazis rather than heading to Disneyland (coincidentally, Walt leaned in the Hitler direction so we were running to the Nazis). We would have our legs crossed begging to pull over to pee and my dad would say “As soon as we hit Eugene.” Or something equally horrifying. Finally one day my mom took off her seatbelt the buzzer to which did NOT automatically turn off like they do today. She crossed her arms and smiled a Cheshire cat grin for the longest time while the nasal buzz of the seatbelt warning taunted my Dad (okay, me and my non-deaf brother as well) until finally, my Dad couldn’t take it anymore and pulled over where we could gratefully relieve our bladders,

It’s not been an easy relationship for either of us - my Mom and I. I suspect that it will remain bumpy, however I am aware of how much my illness is tearing my mother apart and if I can leave her with the knowledge that a lot of what people love about me comes from her, that she helped make me the person I am today, that I can see her good traits – her charm, her delight in the every day things, her creativity, maybe we can make this bitter pill go down a little easier.

PS – if you see me in a pretty sweater, she probably bought it.