Behind The Curtain.

They're moving in a little over two weeks. I just said goodbye to the house that has been home for the last 10 years. I didn't expect to be as sad. It's house number 4 after all. I didn't cry about house 1, 2 or 3, but I did for 4. I loved the first 3. House 4 is special. I got older in the first 3, but I grew up in 4.  Four has been a participant in all of this and leaving it is just as painful as it is refreshing. So goodbye number 4, thank you, but now it's time to get out of the cold and enjoy the sunshine state. The packers will pack up and move everything and my parents will take their first road trip in their new minivan.

Before they move to Florida mom will finish being a participant in the research study. She goes downtown a few times a week to RIC - the third place she stayed, although she has no memory of it. She spends an hour working with her PT, Matt (or "Festive Matt" as we call him on account of his less than present sense of humor). While he encourages her and she bitches they focus on walking, balancing and strengthening exercises. I'm not sure which bit she hates the most, but I am sure that when given a chance my mom will figure out a way to cheat. Regardless of the slightly contentious patient-doctor relationship and the periodic cheating, the study has certainly been helpful. She's stronger than before, can walk further distances and can stand on her own for longer periods of time. 

I can't pretend it's all great. There are certain realities that have to be faced. Things like her left arm, which will never work again. And the rather massive truth that she'll never be who she was before - something she herself reminds us of in times of frustration. And when she says that it feels like the curtain has been drawn, exposing the inner workings of a play we're all in. Like she's called us all out for pretending...to be ok. I'd like to be able to tell her that's not true. I wish I could say, "We're not pretending it's ok, because it is ok." And I would love to be able to cry with her and say how unfair this all is. Tell her I'm just as angry as she is and that I hate having to watch her like this. And I really want to tell her that I get jealous watching other kids with their moms or other husbands with their wives. But I can't. And I won't. She'd never let me get away with that bullshit anyway. All I can do is apologize for pushing so hard, remind her of how far she's come and pull the curtain closed again.

To Living Like a Pro

It's her second post-stroke birthday, but first post-stroke birthday she'll remember. 

A year ago she was in RIC downtown. She celebrated her birthday next to her roommate - a small Asian woman who spoke no English, vocalized her unhappiness with loud moans, giggled like a little girl and was either a nun or just happened to be part of nun squad. She wasn't the worst roommate on the floor. It could have been Frances (http://whatsgoingonwithpam.blogspot.com/2014/09/oh-frances.html)...the crafty escape artist next door to whom mom offered her assistance in hopes their success could bring us all some peace. 

I just went back and read my post from her last birthday. I still stand by what I wrote. Birthdays shouldn't be sad. They should be recognized as accomplishments and days of thanksgiving. Sure, you're hangovers have made you  begin to accept the ware and tear life has had on your liver. And yes, the elasticity of your skin is beginning to resemble well worn spandex. But for the sake of all that's holy, do any of you remember how painful it was to be a teenager? The drama. The agony. The acne. Or how horrible it was to live off of .99 cent Taco Bell tacos and Lipton instant iced tea while trying desperately not to gain the inevitable freshman 15? Think about it folks. Be glad you no longer have to worry about what you're going to do with your life because now you know it's easier to just accept the mediocrity. (I still believe in you though).

This day last year was a good reminder that birthdays are a moment to celebrate being alive. But honestly, I remember it being hard to celebrate that day. 

RIC was an amazing place. It was a place we didn't have to feel different. Our reality was everyone's reality. Life was less intimidating. Inability was the norm and ability was success. Fear was dethroned and hope promoted. "Will we be ok?" was "how do we make it ok?" And so it was much easier to be there than not, because outside inability was failure and the stark contrast of the two worlds hurt like a bitch. 

That day I recognized that she was alive, but not living. None of us were. And that was the punch in the face. My mom was a pro at living...she made it an art form. But there we were - eating, sleeping, breathing, but not living. 

A year later the space between life and living has gotten smaller. Failures are fewer and further between. And the contrast is weakening. Things continue to sag and wrinkle. The grey hairs seem to be multiplying and getting carded is a compliment these days. But if I get to the end of my life and realize that's the shit I wasted my time worrying about then she has taught me nothing. 

Happy birthday, mom. It's an honor to apprentice under one of life's greatest artists. 

A Year Later

Today marks a year. I'm looking out the same window I was looking out of when my dad called me. He tried not to cry. I think all he could say was "Barrie, it's your mother..." The only difference is that it's raining. It feels appropriate, so thank you universe. Thank you for understanding that a sunny day would be too much of a contrast to my sadness. 

I've thought a lot about what is the appropriate thing to say on this day. And then I realized that focusing on what's appropriate is the opposite of what's appropriate. I can't give you the "everything happens for a reason, because if this never happened I wouldn't know _____." That would be insincere. Of course I've learned a lot, I've found strength I never knew I had, I've felt love I never knew was there, I've made life a daily focus...you know, the things people learn and then say and you read but don't actually feel until this kind of shit happens. But that's a good thing. And I DO sincerely mean that. People wouldn't live life and take the risks they do if they felt those lessons too early.  The person you are before those lessons will always be different from the person you are after those lessons, but you need to experience both to appreciate the other.

Today, all I can really think about is how much I love my mom. How much I love being her daughter. How much I love that she did foreign country-themed weeks growing up and how much I love that she let me put hieroglyphics on the wall during "Egypt week," how much I love that she let me throw rotten fruit out the car window when I didn't get into the ballet, how much I love she got arrested for painting flowers on the neighborhood fire hydrant during a sleepover, how much I love that she dressed up in feathers and fake eyelashes with me for the Cher concert, how much I love that she drove me back and forth from Chicago to Cincinnati every weekend for a year, how much I love that she planted flowers in her friends yards in the middle of the night as a birthday surprise.... how much I love that I still have her. 

Old me loved my mom, but new me loves her more. 

A Healthy Dose of Dwelling

I don't want to spend a lot of time on this subject, because first of all, it's my dad's business and not mine, but secondly, I don't think dwelling on it is good for anyone. But who cares! Let's dwell just a little because to not dwell is to not acknowledge how gross some people are in this world and miss the opportunity for the rest of us to reassuringly think to ourselves, "at least I'm not that big of an ass. Jeez, how did you become so horrible? If I were you I'd hate myself."

As my last post alluded to, my father was treated with very little respect by his company and he chose to handle it with the same level of integrity and self respect with which he handles everything. He graciously said goodbye and walked away. I, on the other hand, totally lost my shit and wrote that thank you letter. 

He's been retired for two weeks and he's OK. He promises. I've sworn to stop nagging him about it, so I'm just going to have to take him at his word. To be honest, he actually does seem pretty OK. I think being able to focus on my mom and himself, rather than feeling as though his soul is slowly being squeezed in a vise by a bunch of spineless lemmings who probably have the combined brain cells of a half-dead starfish* that's been surviving off of biohazardous waste left behind by cruise ships is good for him. (Dwelling.) And honestly, there's something to be said for waking up every morning and NOT having to walk into a steamy cage of mutinous vultures** who wreak of rotting integrity and ruthless desperation that only rivals a medieval prisoner captured, caged and left to die in his own filth. I mean, really. It's gotta feel good to not be there. (More dwelling. It feels so good, doesn't it?)

So now you're probably thinking to yourself, "what now?" Well folks, that's an excellent question. What I/we know right now is that my mom is continuing to improve. She continues to get better at cheating during speech and occupational therapy. "This maze doesn't make any sense. This bird is too big to fit through there. He should just go this way." (Draws line around the maze to the end point.) Smooth. And she's also been getting a lot stronger. She's even started walking a little bit without assistance....I haven't seen it myself and mom refuses to tell me about it, but both dad and Dee have seen it with their own two eyes. Because of the continued progress, rehab has been extended until mid-July. We don't know if they'll keep extending, but if they do then obviously staying in Chicago is a priority. Now, let's say that they don't continue to extend the rehab which doesn't result in me throwing an enormous fit and causing a scene because not extending the rehab would be an absolute injustice....if that happens then we pack things up, give the decomposing starfish and shameless birds of prey a good wave goodbye and head for the sunshine state. 

* I have nothing against starfish and in fact I feel badly equating any creatures intelligence to that of my fathers ex-coworkers. 

** I would like to call particular attention to the vulture reference here as this animal is known to purposely defecate on it's own feet as well as projectile vomit up to 10 feet when defending themselves against predators. I know, right?

Dear CBOE, Thank you.

Because I was taught to always send a thank you note...

To whom it may concern at the Chicago Board Options Exchange,

My name is Barrie. I'm the daughter of Stan. Apologies for the intrusive and unexpected note. You see, I just simply couldn't miss the opportunity to share my gratitude with you for setting my father free last week. 

As you know my mom almost died 11 months ago. One day she was great, the next day BOOM, she was knocking on death's door. I'll never forget what she looked like when I saw her that night - tubes everywhere, shaved head, a face so swollen she wouldn't be able to open her eyes even if she tried. I'm sure you also know that over the time of her recovery she has stayed at 4 different facilities in total, each one reflective of her needs and abilities as her health improved. She's home now and doing outpatient rehab. They think she may even be able to walk again! We never even thought she would be alive, so I'm sure you can appreciate how exciting this news is. Sadly, because of the circumstances, she most likely won't be able to continue with the rehabilitation. Such a shame. 

Anyhow, I digress, back to my gratitude. My dad has been spread so thin. Trying to make sure he gets up 3 hours early to get my mom ready and then make it to work is exhausting. And then making sure he gets home in time to have dinner with her and put her to bed while leaving some time to work at night. But that's no longer a concern. So thank you.

Also, as an only child you can imagine how hard it's been to have to share him over the last 20 years....during dinner, over weekends, during vacation....even if he wasn't emailing or calling, he was still distracted because he knew any minute he would have to be doing one or the other, or both. But not anymore. I don't have to share him with you. Thank you again. 

Lastly, you've reminded me of a very important life lesson, one that I've been reticent to accept as I'm unfortunately slapped across the face with the realities of adulthood - loyalty is a childish ideal. Loyalty is a personal choice and something you should only pursue for the sake of your own integrity. Alas, life is not a fairytale and loyalty is not a two way street. If it weren't for you, I would've forgotten. Thanks again!

I hope that you have wonderful lives and God forbid anything ever happens to yourself or anyone in your family, I truly hope that someone does you the same favor of setting you free. 

One final note. Given the lack of compassion with which you have treated my father, and therefore my mother and I, I feel compelled to make one thing clear - this note is completely satirical. I have racked my brain trying to imagine how you could possibly treat another human, especially one of such quality as my father, the way you have. There has never been a more appropriate time to use the words "despicable" and disgusting" than as this moment. 

Sincerely yours,

Barrie Wilhelmi

Missing The Intangibles

Hi guys. It's me. Been a while, right?

No good excuse really. Just pure avoidance and procrastination. I've been battling the persona I seemed to have built for you all. The 'strong' and 'courageous' daughter. And lord knows I want to be that person. Badly. But I've decided that there's something to be said for finding strength and courage in honesty. I can't pretend that things are ok or that we're just working our way back to the old normal. I think the acceptance of the new normal is our goal. Accepting the harsh reality that she isn't Pam who just happens to be in a wheelchair with a shitty left arm and a wobbly left leg. She's witty in a wheelchair. She's driven in a wheelchair. She's whip-smart in a wheelchair. And although she's kept a lot, she's lost a lot too. Some of the missing pieces are tangible - things like attention span and impulse control (two things she already struggled with anyhow, so that's fairly manageable). But there is also the intangible, which is something that I don't know I can define. And that's the thing that I miss the most. It's the piece I cry about. The piece I can pretend is still there if I don't call for a few days ...The woman who gave me life 34 years ago and has given me unwavering amounts of love. The person who taught me how to be a woman, how to be a friend, how to be a wife, how to be a human. The giver of endless amounts of lessons. The person I strive to replicate. 

But I pay for that blissful ignorance because there are those moments, things like Mothers Day (a hard slap in the face). Or when she calls to ask me to use my two hands to find a phone number because she can't find it with her one. Or when she calls and then quickly and unceremoniously hangs up on me because her hand is too greasy from popcorn to hold the phone. Sometimes my dad and I laugh, because what else can you do? But it sure as shit isn't funny. It's infuriating. 

I/we should be happy, right? I mean, she wasn't supposed to live? And she surely wasn't supposed to have made it this far in recovery. And I AM happy. I'm thrilled that I still have my mom. And absolutely elated that my dad still has his wife. And over the moon that Dee has her sister and Rick has his cousin. At least I'm happier than I would be if she...you know. But here's the thing, being "happier than" isn't as good as being happy. Especially because as her daughter my happy was awesome. Something that I suppose I should be happy about. Damn.

Where Are The Flowers, Stanley?

I've started this entry multiple times. Not having news feels good and bad. No news is better than bad news. Clearly. But no news feels like stasis. I won't lie, it's still not easy. Sometimes I just cry....and not in private. It sneaks up on me. Like on the subway ride home. "Don't mind me, I'm just going to sit here and have a very personal moment in a public space that is enclosed so sorry strangers, you can't get away from me." Thank you New Yorkers for pretending you don't notice what's right in front of you. 

Anyhow. I think we're all getting used to life more every day. Mom goes to out patient rehab for half-days three days a week. Mom and dad go to dinner together. They get manicures at their favorite neighborhood salon. They call me on speaker phone and banter back and forth while I listen. Just like old times. Mom lovingly giving my dad shit, dad pretending to be hurt by it etc. 

She called me the other day to ask me to call my dad for her...

"Barrie. Can you call your dad and ask him what time dinner is and if he is picking up flowers on the way home?"

"Dad. Mom asked me to call you and ask you about dinner and flowers."

"What, are you her assistant now?"

"Just call her back."

She called a few hours later to see which one of us had failed to follow instructions. Turns out dad came home without flowers. But why didn't she just call herself? Well because the caretaker made it clear that she "shouldn't bother Mister Stanley at work." You know who she didn't say that to? Me. Classic Pam. 

No One Ever Feels Ready, Right?

Many of you have asked how she's doing at home and I've been struggling with an answer. The simple answer is that she's fine. I think she's happy to be home. Happy to have her bed. Happy to have her closet. Happy to go to sleep and wake up in a familiar place. Nothing surprising there.

I don't think it's easy. It will take a while for my dad to get into a routine that feels natural for both of them. She has two different caretakers - Elma and Solome - who my dad says are lovely and mom likes them both. Patty has been with my dad since Wednesday and in his words, she has been a "real blessing." Nothing surprising there either. 

All of this feels like great news. Predictable and promising. So why don't I feel excited? 

Fear.

Mom likened it to the moment you bring your baby from the hospital for the first time. "Shit. What do we do now?" You're on your own. It's time to figure it out. But on top of that terrifying scenario there's the other piece that is nagging me. Essentially the last 7 months has been a bit of an alternate reality. To me, she hasn't been my mom, she has been my mom in the hospital. The collision of the old world and the new world is at a head and the two may take a bit to blend into a distinguishable vision and the vision is ours to create. No pressure or anything.

Home, Sweet Home

Only Pam would have one large suitcase and two extra large shopping bags worth of stuff in her hospital room. It almost didn't fit it in the car. But we both agreed it was poor form to say goodbye and then come back several times to pick things up. There was so much stuff that there were many "oh-right-I-forgot-I-had-this-cute-top" moments.

When dad and I got there this morning the ICU angels were visiting. They finally got to meet the legend they helped us save. The perfect amount of magic to begin our grand send off. I rolled mom through the halls so she could say her goodbyes. There were tears. Lots of laughter. She thanked Claudette and Nadine for all of their help and told them how much she would miss them. We stopped to talk to Deborah - her first friend at the stroke unit. "Bye Deborah. I'm leaving today. If you want out of here, you need to be more of a nuisance. I had two alarms. If they don't put alarms on you, you're not doing it right." And after imparting that wisdom, we wished her luck and went on our merry way.

So what now?

Well, there's no rest for the weary. Out-patient rehab at RIC starts tomorrow. Six hours, 3 days a week. Each Tuesday, Wednesday and Friday she will be picked up at 7:15 with a packed lunch, ready to do 2 hours of PT, 2 hours of OT and 2 hours of speech. She's been clear that she has no intention of participating in speech, but I'm pretty sure that's not going to fly. Her caregiver starts tomorrow and will spend every day with her. She's already told me that she's going to miss the ruckus of the hospital. There was always someone to talk to there, so visitor's welcome. Nap time is usually 1ish-3ish. Sense of humor required.

I leave in a few hours to go back to New York. It's definitely going to be hard, it will be the first time in 7 months that both my mom and dad will see me off which will make it easier.

It's Been 175 Days

July 15th was 175 days ago. I'm sitting exactly where I was sitting that day. That day I had missed a call from my mom and tried to call her back. She didn't answer. So I texted "just called you back" to prove her wrong that although I may never answer my phone, I DO call her back. Didn't hear back. Not surprised. She probably answered her own question or called DM to ask him the technology question. But that's when my dad called. And when dad calls in the middle of the day, it can't be good.

"Hi, what's going on?"
"Your mother..." and then tears.

Then just panic. I remember the car home. I remember sitting in my living room talking outloud to my grandmother and Aunt Virgie. I remember pleading with them to tell my mom to turn the hell around and go back to earth. (Thanks by the way ladies.) I remember being at the airport. I remember crying across from Auntie Anne's. I remember people staring at me. I remember not caring. I remember all the voices on the other end of the phone. Every. Single. One. I remember the announcement that my flight might not leave. I remember crying to the man at the desk. "I have to get to Chicago, my mom is in the ICU. I can't miss her." I remember apologizing for sounding angry with him. I remember the stars in the sky on the way to the ICU. I remember hoping I'd make it to say goodbye. I remember walking into her room. I remember her bruises, her swelling, her bandages, her machines. I remember her breathing.

Fast forward 175 days. In the last week she has stood up on her own...TWICE. In the last week she has walked the hallway four times with just a cane and her therapist's oversight. And in this last week she moved her left leg on her own. So all of those memories which could have been painful. They're worth it.

Settling In

My mom called me last night. She wanted to tell me that my dad had abandoned her. He'd just turned his back and walked away, she said. She cried. She pleaded for my help. I tried to explain. I promised her she wasn't abandoned. I swore that this was all so that she COULD come home. She hung up on me.  So I cried and I called my dad. For a few minutes I got to be a kid again and call a parent. Thank you for that dad, it's a privilege to be your daughter. You allowed for a bit of refuge in a painful moment. Of course we all know she wasn't abandoned. And we all know that she's in a very safe and highly esteemed medical center, because we'd have it no other way, but sometimes the facts just don't matter. So dad went and spent the night.

She's now a resident at the Evanston Northshore Hospital stroke center. The social worker at Presbyterian Homes has worked there in the past and assures us that it's a fantastic program, not to mention a tight knit family. It's also in the same building as the ICU, which means that our favorite Angels are upstairs adding extra comfort to a yet another fragile transition. Now that's she's strong enough, she will have several hours of rehabilitation therapy every day with the goal of accelerating her recovery and getting her home and back to her life. We're all hopeful that this will be another successful step in her recovery. And since she hasn't called me to complain yet, I'm thinking the odds are getting stronger.

Dear Mr. Scott P. Serota, President and CEO of Bluecross Blueshield...

Dear Mr. Scott P. Serota,

From what I can gather from your headshot on your company's website, you look like a nice enough person. I hope that you will read this letter with an open mind and an open heart. 

My name is Barrie Wilhelmi, my parents are insured by your company. On July 15, 2014 my mom suffered a nearly fatal and completely devastating stroke on the right side of her brain. At the time of her stroke she was a spritely 63 years old and perfectly healthy - it seems she is merely a victim of an anatomical flaw/a weak blood vessel. Fortunately she was found by a neighbor on the floor of her condominium building's shared gym and the neurosurgeon was able to save her life. She has since fought tooth and nail to recover and fight her way back to some semblance of her former self. It's been a harrowing journey to say the least. Although I am not technically an only child, for all intents and purposes I am. Therefore my parents are truly everything to me. You can imagine the fear that I live with every day.

The reason I am writing to you is because your company has been nothing but supportive during this journey. Approving her stay along every step, so in a way being yet another voice cheering her on and believing in her potential. Until now that is. My father received a letter explaining that she has "plateaued," which makes it sound as though she is merely a business investment rather than a human fighting for her independence. It is also grossly inaccurate of her current "status" according to a plethora of documentation and observation by her doctors, therapists, case worker and social worker. Every person who works with her is stupefied by this decision - a decision that has been made by one doctor at your company who has never actually worked with or even met my hero of a mother. In fact, having never seen or heard from this doctor, I am unable to give you his or her name. 

It seems to me that you are in the business of supporting and encourage human life, so I am pleading with you to help me figure this out. I have to believe that there are good and decent people in this world who can see beyond money. 

Best, 

Barrie (Leimer) Wilhelmi

Dr. Evil

Dr. Stein. That's the name of the doctor at Bluecross Blueshield who won't approve a longer stay for my mom at Presbyterian Homes. We're completely shocked along with the Pres Homes doctors, the social worker and the Bluecross Blueshield case manager. Go figure. It's hard to imagine Dr. Stein as anything else than a shriveling soulless ball of evil who feeds on kittens and puppies and is incapable of love. Seriously Dr. Stein, how do you sleep at night? Perhaps, Dr. Evil, you've had some trauma in your life that has skewed your sense of humanity, but write a book or sell a lifetime movie script, just please don't take it out on my mom. The truth is though, I don't care what happened to you as a child. The truth is that somewhere deep inside there is still hope that I hadn't known was there and you, Dr. Evil, have threatened it. We all know what happens when a Houston woman feels threatened...RAGE. Lucky for you, I've promised to keep the perverbial guns in the holsters for Stanley's sake for the time being because there are still options. 

Last week before this villain barged into our lives we had been discussing her going to acute care. This was (and still could be) great news. It means that she's strong enough to do a lot more intensive rehab. The insurance hasn't rejected that yet and luckily Dr. I-have-no-heart-and-I-eat-puppies-and-kittens isn't involved.  There is also one more Hail Mary play for insurance approval for her to continue her stay at Presbyterian Homes, which we'll find out about tomorrow end of day. The ETA of the acute care is unknown so if she gets booted out of Presbyterian homes she'll have to move home which isn't equipped for her. 

I know I'm not the first one to feel the complete injustice of insurance. I'm not the first to be blinded by the huge contradiction of their purpose and their behavior. But here's the part that really kills me. This life that she's living is a result of a choice she made to live. She decided not to die. She took the challenge to stay and fight her ass off. Pardon my french folks, but that takes serious balls and in my book deserves monstrous amounts of respect and support. Two things Dr. Stein (and insurance) are denying her. Appalling. 

Not All Problems Are Bad

"When I was in the ICU I had to choose. I heard someone ask me to stay."
"That was me."
"Well, I'm your problem now."

My Visit In Review

Now that the holidays are over, some of you might be thinking "I wonder how the holidays went for Pam?" Some of you may not have wondered that, but now that I've said it I'm sure I've sparked your curiosity.

In summary, I would say that it went really well. She came home for Christmas Day and for New Years Day. We took her to Into The Woods on New Years Eve Day. Rick willingly sat through a musical - that's love folks. As I mentioned in a previous post, they've decided to ween her off of the anti-seizure meds and because of that she seems to be gaining more awareness. Of course this is a double-edged sword. Yes, it's nice that she's starting to feel more "there," but with that comes frustration with her reality. Presbyterian Homes is certainly not a prison, and mom has made friends with nearly everyone who works there, but at the end of the day it's still not her home. We all try to explain why she's still there...because she's continuing to improve so much that it's clear her staying is benefiting her progress in recovery.

I don't know what the next step is because everything is based on the hypothetical. She has defied odds, so this is uncharted territory and we're all creating as we go. Educated guesses? Sure. Pre-emptive moves? Of course. But concrete answers - no. We're all just coach and pit crew "running" along side her with cranberry juice and chocolate, clean gear, motivational posters and her phone. She's taken the lead.